EMAIL BULLETINS Muktanand V3 Word
MUKTANAND MEANNJIN
EMAIL BULLETINS 2001 – 2004
{This document (or extracts therefrom) is not to be copied or reproduced
in any form of media without the express permission of John E Ransley}
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Email #1 Thursday 27 December, 2001
Dear Judy & Robyn (John’s sisters)
Just to let you know that a mammogram screen on 21 November picked up a small lump in Muktanand’s left breast which was confirmed to be malignant Wednesday 28 November. She had a lumpectomy 13 December and using the silhouette system the surgeon only needed to sample one lymph node which was free of any changes. The surgeon described the cancer as small (12-15 mm) and early stage. However a 2 mm annulus sample around the lump showed pre-cancerous changes so Muktanand is due to start radiotherapy about the second week of January. The prognosis is very good.
Of course it has been a shock but an early dream of Muktanand’s indicated she would be all right provided she took the opportunity to get better. So she has given up work completely and handed the yoga/meditation centre over to her two senior teachers. She has told only a few of the yoga students and a couple of close friends about “the lump” – myself likewise (only Chris Powell and Tony Harper in Sydney). Muktanand is telling most people that she’s stopping work because of sickness in the family – her mother has been having frequent angina attacks so that’s also true!
Fortunately I’m not working so I can be supportive when needed. However, so far Muktanand has sailed through the operation and general anaesthetic without any problem – we are hopeful the six-week course of radiotherapy won’t be so bad either. After that they are recommending Tamoxifen for five years.
We are approaching this as lightly as possible while still doing everything that can be done. People make a lot more fuss about cancer than about other illnesses and a lot of it is not justified. In Muktanand’s case the prognosis is much better than if she had suffered a heart attack or a stroke or had a melanoma removed (each of which has happened to one of my friends). We don’t need the aggravation. Plus we don’t need all that New Age stuff about creating your own reality or ignorance about “karma”.
That’s it for now. I must say the doctors involved this time have all been excellent, in marked contrast to the treatment a different set of doctors (mostly specialists) meted out to Zalehah, the “girl” (28 yrs) I take to hydrotherapy, whom they nearly killed.
Muktanand asks that you be very discreet.
lots of love, John
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Email #2 Thursday 17 January, 2002
Dear Everyone
Just to let you know Muktanand had a whole body bone scan yesterday which revealed a number of secondary cancers in her hip, spine, sternum and skull. This is despite the good result from the operation, the small size of the breast tumour, the Stage II – Grade II classification, and the lack of any lymph node involvement. The tumour has already got into her skeleton.
Obviously a big shock and Muktanand is not really capable of talking about it to friends at the moment.
She is currently at the hospital being measured for radiotherapy to the sternum which has been the source of intractable sometimes excruciating pain (the reason she was referred for the bone scan). They are confident a week’s radiotherapy to the sternum will significantly reduce both the tumour spotting and the pain. She has also been prescribed morphine, both liquid and slow release MS Contin 10 mg tablets.
She will then be started on Tamoxifen which is an oestrogen blocking drug. As her particular cancer is very oestrogen-sensitive, there are good prospects of at least preventing further spread and some sort of control. Once she is confident about her bones, she intends to get back into some gentle yoga, with particular emphasis on pranayama.
She had a dream in December which indicated there would be a terrific struggle but she would arrive safely. Also an astrologer told her some years ago she would come close to dying before recovering. She is hanging onto these two things.
love for now, John
PS Please be discreet, she prefers that only a few people know (at least for the present).
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Email #3 Saturday 26 January, 2002
Dear Everyone
Muktanand started the pain relief radiotherapy last Thursday 17 January and is due to finish next Tuesday, a total of 8 treatments (totalling 2,800 rads). On Monday her morphine dose was doubled to 20 mg twice a day because of increased sternal pain over the weekend – that then caused very debilitating nausea for several days, not relieved by the standard anti-nausea medication Maxolon (but cannabis helped quite a bit).
Yesterday when she was reviewed at QRI (Qld Radium Institute – an excellent facility with wonderful staff), the doctor in charge prescribed Zofran, which is a new and expensive anti-nausea drug normally reserved for chemotherapy patients and radiotherapy patients receiving high doses of radiation. It seems to be working well. The doctor (David Thomas, radiation oncologist) also said the radiotherapy to Muktanand’s chest was partly responsible for the nausea, because some would have impacted her digestive tract.
M finds the nausea completely debilitating so if that can be resolved she will be manage much better.
On Wednesday we also saw oncologist Dr Choo (actually a locum for M’s usual oncologist, John Mackintosh). She confirmed Muktanand’s cancer is now reclassified to Stage Four, that there is no cure, and also she would be recommending chemotherapy if a CAT scan showed spread to soft tissue (liver, lungs). Muktanand’s surgeon had predicted the oncologists would want to go straight to chemotherapy. The CAT scan is scheduled for next Wednesday and Dr Mackintosh for February 4.
So medically at least, the news is dire. The only positive factors are the new u-beaut anti-nausea drug Zofran (presumably a financial bonanza for GlaxoWelcome), and also a new bone-strengthening drug (Aredia) which is given intravenously once a month – apparently very effective in preventing fractures.
Spiritually, the news is much more positive – tell you about that later.
love from both of us. John
PS Re pharmaceutical companies, the new John Le Carre book “The Constant Gardener” is an interesting fictional treatment.
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Email #4 Thursday 31 January, 2002
To Everyone
Just to let you know Muktanand sustained a fracture to her right Lesser Trochanter bone on Tuesday morning, in an area near the top of her femur that had been undermined by secondary cancer. She did it as she was trying to open the lid of the toilet with her right toe (the ambulance driver said: “as you do”) which required raising her right leg. She was about to empty a saucepan full of food scraps into the toilet bowl (our kitchen sink is not very robust) and was trying to protect her back by not bending forward. For this feat she has achieved a certain amount of fame in the hospital.
She can crawl but not walk. The Lesser Trochanter is an attachment site for the ileo psoas muscle but the orthopaedic surgeon says she can get by without it (other hip flexor muscles will take over its function). She is scheduled for an operation this afternoon, Thursday, to put a pin in her right femur, so that she can walk. The surgeon says she will be able to walk the next day, but the physiotherapist says that’s just surgeon-talk and day 2 is a better target.
Muktanand’s situation is obviously enormously distressing but she is not suffering any significant physical pain. Yesterday she was extremely ill with nausea but that was eventually successfully managed and she had a good night’s sleep. A soft tissue CAT scan was performed yesterday morning but we don’t know the result (whether the cancer has spread to soft tissues).
Muktanand has always used dreams and to a lesser extent meditation as a way of tapping her intuition or getting spiritual guidance. On this level the indications are that a period of catastrophic life-threatening news will be followed by a peaceful and joyful resolution.
Regards, John
PS A very good book on the subject of breast cancer and spirituality is called:
Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam Wilber
by Ken Wilber, Shambala 1993.
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Email #5 Saturday 2 February, 2002
To Everyone
Unless anyone objects it will be easier for me to email you as a group. But please feel free to email me personally and I will attempt to reply as I am able.
Apart from keeping you informed because Muktanand wants you to be informed, these emails should remove the need for Muktanand to repeat the history of these events when she eventually talks to you in person or on the phone.
In this email I am happy to report the orthopaedic surgeon’s opinion that Muktanand’s Thursday operation (31 January) went very well. A pin was inserted into the right femur (thigh bone) with two cross screws at the top end where the neck/head inserts into the hip socket. He said the femur is intact without any signs of fracture. He sampled some cancer cells to test whether they were caused by the breast cancer.
The surgeon said the pin was the shortest one they had in stock – he said they don’t make them for children.
Yesterday (Friday) the physiotherapist got her to walk from the bed to the door of unit and then back into the recliner chair. They left her in the recliner and she was able to do a short sitting meditation. It must have been very effective because by the end of about 20 minutes her blood pressure had dropped through the floor and the nurses started freaking out.
I don’t think I’ve mentioned the private room. It is quite spacious and when you shut the door to the corridor very quiet. It has its own bathroom and has space for two chairs, a full size recliner chair and a desk, as well as the space-age hospital bed. Muktanand has her own TV (not used) and two hand-held devices for raising, lowering and tilting the bed and turning on and off all the lights, as well as calling for a nurse. The nursing service was pretty erratic pre-op but has been much better post-op. If you ever have need for a private hospital room it is a very good idea to ensure you have a personal assistant.
Muktanand is very happy to have a private room and has been directing her personal assistants to arrange it in precisely the way that pleases her. Being mildly zonked on morphine and confined to bed with a couple of deep wounds is obviously not an obstacle to being properly organised.
Today (Saturday) the physio walked Muktanand along the corridor for about 60 metres and had her sitting in the recliner chair again. A nurse called Paulette gave Muktanand a “fabulous” bath in bed with lots of soap and water (don’t ask how). Her access to her personal morphine pump (press a button and get an injection of 1.5 mg morphine) is to end on Sunday, with morphine patches to be substituted instead. Apparently the standing patient record for overnight presses to the morphine pump is 120 – Muktanand only used hers 11 times.
More news later. Love from both of us.
John
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Email #6 Tuesday 5 February, 2002
To Everyone
With the yoga term for Authentic Yoga starting this week this is just a note to let you know how Muktanand wants to handle enquiries about her health.
There are many friends Muktanand would have liked to break her news to face-to-face, but the January sequence of events has been so fast and so catastrophic that there hasn’t been any time. Basically only the people in this email list have been told about the developments in January. A small additional group of long-standing yoga students were told initially about the breast cancer diagnosis, but as far as they know the December operation was a success.
In the wider yoga and Buddhist community Muktanand wants to avoid speculation and gossip, especially gossip that gets back to her mother. A few people have been told she has broken a small bone in her hip. A few others have been told she has injured her (right) hip. Both groups may have been told she is receiving physiotherapy treatment and will be on crutches for a while. Some may have heard she is receiving physiotherapy in hospital.
If possible, Muktanand would like the following protocol to be observed:
Please don’t introduce Muktanand’s health as a topic of conversation voluntarily, but if it comes up it is OK to say she has injured her hip, she is receiving physiotherapy and she will be on crutches for a while. If people have heard tales of broken bones it is best to say she might have broken a small bone in her hip and leave it at that. In any case you can say that Muktanand has gone into semi-retreat in order to focus on her practices and her health (both of which are true).
Last but not least in relation to the same issue, if you are participating in a conversation or you overhear a conversation that feels more like gossip and speculation rather than loving concern, perhaps you could take that person aside and ask them to respect Muktanand’s privacy.
More news later. Love from both of us.
Muktanand and John (Kundan)
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Email #7 Thursday 7 February 2002
Dear Everyone
The Doctors
Muktanand seems to have been lucky with her doctors. The surgeon who removed her breast lump, Chris Pyke, came across as a lovely person with a high level of professionalism. The two oncologists have been John Mackintosh and Dr Choo (female locum while Mackintosh was away over Xmas). While initially at least the oncologists lived up to their reputation for coldness, once Mackintosh came to grips with the situation he actually started to crack a smile or two, and lately he has almost beamed. David Thomas, the QRI radiation oncologist, and Peter Steadman, the Mater orthopaedic surgeon, have from the start exhibited excellent communication skills and a confidence-inspiring presence. Dr Thomas, in particular, demonstrated considerable empathy on the two occasions Muktanand presented at QRI in extremity (the first with her bone scan result, the second with her trochanter fracture).
Despite being seen by a number of specialists it was Muktanand’s GP (a specialist in his own way) who diagnosed the bone cancer. Chris Pyke thought this was a very good diagnosis. On her GP’s advice Muktanand has also been taking massive amounts of Co-enzyme Q10 to accelerate the healing of her surgical wounds. Pyke was impressed with the healing of her breast incision and hopefully she will have the same result with her hip wounds.
CAT Scan Result
As previously described, Muktanand had her femur pinned in an emergency operation on Thursday 31 January. On the same night John Mackintosh told us the CAT scan of her abdomen had revealed secondary cancers in her lungs and liver. Mackintosh explained the spots in the lungs were definite secondary deposits, even though they were too small to show on a chest x-ray performed a few days previously. There were several spots in the liver, including one of about 3 cm, but her liver function tests indicated the spotting had not significantly affected liver function. Mackintosh said liver function was an important consideration in the choice of therapy.
Despite being “pretty cruisy” from the operation anaesthetic, Muktanand responded very coherently and calmly to this news, and asked all the right questions. Of course the news was more or less expected by us, but it was still another life-threatening blow.
Treatment
The treatment regime recommended by Mackintosh is a combination of hormonal therapy (Femara, an oestrogen production blocker) and monthly biphosphonate therapy (Aredia, which acts as a bone-strengthening treatment). David Thomas has recommended this regime be supplemented by localised radiation therapy to reduce bone hot spots.
The Femara treatment had been suspended for the operation but was re-commenced Tuesday 5 February, and the first Aredia treatment was given via I/V drip Wednesday 6 February. Side effects so far have been minor.
John Mackintosh told us that if the treatment works, there would be significant shrinkage of the bone tumours and strengthening of the bones. However, he cautioned that the bone cancer cells were less sensitive to oestrogen than the primary breast cancer, and might therefore respond less well to the oestrogen-blocking Femara therapy. The responsiveness of the liver deposits to the Femara therapy would be monitored by blood tests, and a review CAT scan would be performed after 6-8 weeks. If the treatment showed signs of failing, it could be co-joined with chemotherapy at any time.
So far as Muktanand is concerned, this treatment regime will address the illness whilst allowing her space to focus on the yogic side of things.
Cancer History
Given that Muktanand first noticed chest pains in September, it seems clear the cancer has been around since at least the middle of 2001. One specialist thought it may have been developing over 1-2 years (which would mean it was growing at relatively normal speed). Muktanand noticed a sudden change in her energy around Easter last year, but attributed this to her long-standing Chronic Fatigue Syndrome.
The ferocity and speed of the attack on Muktanand’s physical integrity and life energy over the last few weeks has been simply stunning. Ten days ago Muktanand was very, very ill. Since then the fracture to her lesser trochanter has made things significantly worse, with a whole new set of problems around mobility, pain control and the need for a lot more physical support. She is bearing all this with great courage but she needs all your loving thoughts, chanting, prayers or whatever to get her through the next few difficult weeks, during which she has to cope with crutches as well as the uncertainty of the new treatment regime.
Love from both of us.
John & Muktanand
PS: On a more positive note Muktanand has been able to resume consumption of her afternoon cup of chai (spiced Indian milky tea) without any side effects except the desired ones. Her appetite has also returned and she has been eating very well.
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Email #8 Friday 8 February 2002
Dear Everyone
Just to let you know Muktanand was discharged from the Mater hospital today.
She has not returned to Rosary Crescent but has gone into a retreat situation for a while near the sea.
She is getting around on crutches and has been told to expect she will need the crutches about 4 weeks before she can become independent. Rosary Crescent will be modified with stairway railings to make it safer for a person on crutches (as well as safer for yoga students feeling spaced after an end-of-class meditation).
Despite the reputation of hospital food she has not lost any weight and despite the reputation of opiates her digestion is working normally (admittedly with the help of various medications).
We are hopeful that the discharge signals the end of the period of catastrophic news, and that Muktanand can now look forward to a quiet period of yoga practice and recovery of her health.
love from both of us.
Muktanand & John
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Email #9 Saturday 16 February 2002
To Everyone
Hi. This email is to bring you up to date again after a busy week.
Following her discharge from hospital on Friday 8 February, Muktanand enjoyed a lovely long weekend at her seaside retreat. The retreat is actually a small house on a flat suburban block with a spacious sheltered garden, the odd seagull or three, and sea breezes. The street is very quiet and the house very easy to negotiate, lacking all the Escher-like flights of stairs at Rosary Crescent. The location is ideal for a retreat and the house has a beautiful yoga room.
On Tuesday morning Muktanand was re-admitted to the Mater Private hospital after a night of severe left sciatic pain and progressively worsening pain in her left hip (ie not the one that was operated on). Because of advice from orthopod Peter Steadman that her left hip socket was compromised by disease, she had been protecting her hip both sitting and walking. When she phoned the hospital on Tuesday morning, her radiation oncologist, Jonathan Ramsey (now returned from overseas), arranged for her to be brought by ambulance into Emergency for investigation of a possible fracture to her left hip socket.
The x-rays of her hip did not reveal any fractures. On the advice of Peter Steadman, an MRI (Magnetic Resonance Imaging) procedure was also performed on her lumbar spine to identify the source of her sciatica. Although the MRI confirmed previously reported disease in the L1 and L4 vertebrae, it did not reveal any evidence of vertebral fractures or of structures pressuring major nerve roots.
This is the first occasion in this series of events where Muktanand has not sustained the worst possible outcome.
Muktanand was scheduled to commence a series of 5 radiotherapy treatments to the left hip on Tuesday 12 February. This series had been hastily arranged on Monday after Muktanand expressed concern that radiation to her left hip would not commence for another 2 weeks (due to a confused handover between the two radiation oncologists, Thomas and Ramsey). Following Tuesday’s admission both Ramsey and Steadman recommended this series be expanded to include the two lumbar spine “hot spots”, and on Wednesday Muktanand was dosed with the first “fraction” to both areas.
Prior to Wednesday’s treatment, Ramsay told us the radiation to the lumbar area would basically drill right through her abdomen, although most of it would go into the spine. In his experience this caused queasiness in some patients, but he didn’t anticipate any real problems.
Muktanand is very susceptible to nausea and the lumbar treatment produced a very bad reaction. On Wednesday afternoon she threw up her breakfast and lunch and then continued to be nauseous all day Thursday and Friday until Friday night. It took all this time for the nausea to subside, assisted by intravenous Zofran administered via a drip. Because of the nausea she basically went without food for three and half days, except for the hospital’s ‘clear fluids’ diet. She was also too sick to manage any additional radiation treatments.
We already knew it was important to question the doctors and insist on proper answers. Last week a night-shift nurse called Kate reinforced this by warning Muktanand that nurses and doctors had a strong tendency to relax into a problem-avoiding routine. Kate said in her experience small symptoms often developed into big problems and all symptoms deserved to be pursued, even in the face of irritability and dismissal by staff.
This week produced another illustration of this principle. Muktanand had gone without solid food for three days but all the hospital was offering was jelly and broth. Despite being debilitated by nausea Muktanand felt it was important to get some proper nourishment so she organised the hospital dietician to prescribe some high protein liquid food (‘Enlive’). She also organised fresh beetroot/ginger/carrot/apple juice from her recently purchased monster juicer (the ‘tardis’) at home. Without her initiative nothing would have happened. She hopes to return to a solid food diet on Sunday.
The revised treatment plan is for Muktanand to stay in hospital for the delivery of the remaining radiation fractions to her left hip. If the hip treatments go to plan she will be discharged next Friday. Radiation to her spine has been deferred for the time being, and in any case pain from both spine and hip ceased once she was confined to bed in hospital. Today she re-commenced walking with the roller-aid (frame on wheels). Her right thigh wound is healing nicely.
Peter Steadman is emphatic there should be no weight-bearing on the left hip. He is now recommending an elective left hip replacement as the only sure way of avoiding a hip socket fracture. David Thomas has a high regard for Steadman’s opinion and inclines to this view. However, Thomas also acknowledges the combination of radiotherapy (bone cancer reversing), Aredia (bone-strengthening) and Femara (oestrogen-blocking) therapies should, over time (6-8 weeks), reverse the bone disease and restore bone strength.
Muktanand is looking forward to another retreat and recuperation break after discharge from the hospital.
Love from both of us.
John & Muktanand
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Email #10 Saturday 23 February 2002
To Everyone
Muktanand was discharged from the Mater hospital yesterday, Friday 22 February. The discharge went more smoothly than the previous discharge and the team re-installed her with minimum fuss in her retreat near the sea.
The series of five radiotherapy treatments to her left hip were completed on Thursday. The first treatment in this series was administered on Wednesday 13 February but was interrupted by extreme nausea related to concurrent radiation to her back. Following the first two (hip-only) treatments this week, Muktanand on Wednesday suffered a repeat of the overwhelming nausea. The oncologist John Mackintosh acknowledged the connection, but the staff at the Queensland Radium Institute refused to admit there was any connection between the radiation and the nausea. Fortunately the nausea was brought under control with Zofran in time for Muktanand to be discharged on Friday as planned.
Because of the nausea Muktanand was once again restricted to a very light diet for 2-3 days and not surprisingly she has lost weight. She feels ‘purged’ by hospital admission, and to my mind she looks a bit like she did in 1985 when she returned to Australia from India – a sort of ‘pranic’ look.
She started eating normal food as soon as she got out of hospital, and today she had a terrific day after 10 hours of uninterrupted sleep last night. She is remembering some of her dreams again.
She is mobilising with a walker frame and crutches with a wheelchair as standby. She has to take great care with weight-bearing on both hips. The surgical wounds on the right thigh are healing very well.
A second Aredia (bone-strengthening) treatment is scheduled for next Thursday, 28 February. After that a ‘planning session’ on 4 March is intended to be the start of a series of 5 outpatient radiotherapy treatments to her right hip (the one that was operated on).
Muktanand is still very weak and will not be seeing visitors for some weeks. She sends her love to everyone.
love and warmest regards
John
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Email #11 Saturday 2 March 2002
To Everyone
This has been a week of rest and recuperation for Muktanand at her Victoria Point retreat.
It has also been a week of ‘Firsts’ since she sustained her lesser trochanter fracture on 29 January:
(a) The First week she visited the Mater hospital as an outpatient (for the Aredia treatment on Thursday).
(b) The First week without hip pain (she remains on the lowest level morphine skin patch).
(c) The First week she took a spin down the road at Victoria Point with her walker frame.
(d) The First week she was able to do a proper sit-down meditation.
(e) The First week she ate a Chinese takeaway.
And the First week she visited Rosary Crescent – using her crutches to get in and out of the house instead of the expensive handrails that have just been installed. [The large throw-down Indian carpet in the library had also been moved in her absence and required straightening.]
At Muktanand’s request the series of radiotherapy treatments scheduled for her right femur have been deferred so she can spend another week recuperating at Victoria Point. This series will now commence on Wednesday 13 March and finish Tuesday 19 March with Muktanand attending as an outpatient. The third Aredia treatment is set down for Thursday 28 March.
Love and warmest regards from both of us.
John & Muktanand
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Email #12 Sunday 10 March 2002
To Everyone
Muktanand has had a very mixed week. For those who are interested, here is a blow-by-blow account.
On Sunday 3 March Muktanand experienced morning queasiness which gradually worsened through the day but with a combination of raw ginger tea and lots of bed rest she was still able to eat some solid food. On Monday her post-breakfast queasiness rapidly worsened into full blown nausea and at 10 am she recommenced taking 6-hourly oral Zofran wafers, her major antidote to nausea. The three of us (Muktanand, Sakshi and myself) identified the Durogesic skin patch (low dose Fentanyl, 25 mg/hour synthetic opiate) as the major suspect, and with the agreement of specialist Jonathan Ramsay this was removed on Monday morning. Ramsay warned the Fentanyl could take 2-3 days to clear her system, and also prescribed Stemetil suppositories to help with the nausea. However the Stemetil made no obvious difference.
On Tuesday night Muktanand was still suffering nausea and had been on a liquid diet for 2 days. She then self-prescribed cannabis and this proved to be very helpful. It also seemed to stabilise extreme temperature fluctuations caused by the Femara-induced menopause. [May the cannabis dealer enjoy a long and healthy life surrounded by kind and loving friends!].
By Thursday she was able to eat three meals and only required one Zofran in the morning, with the cannabis as an ongoing medication. On Friday she felt well enough to phone an old friend but the nausea started to return, increasing on Saturday and present again on Sunday (today). Nevertheless on Saturday and Sunday she able to eat dahl and rice meals.
Severe nausea has always been Muktanand’s particular demon so she has been pretty low. She has also been very weak from another bout of enforced dieting.
The major positive development for the week was the complete absence of any bone pain after the removal of the Durogesic patch, indicating the radiotherapy treatments to her sternum and left hip had at last been successful. She did not even need to take Panadol.
Another positive development was the return of the wheelchair and walker frame to the hiring agent (chemist), Muktanand feeling sufficiently confident to get around on her crutches.
And a third positive development was that she started to complain of being bored – that means she must be getting better!
Muktanand was delighted this week to receive a copy of the Chandi Path from two dear friends in India. The Chandi Path is a new (at least new to Muktanand) translation of the full version of the Durga Path, which will be known to some of the people receiving this email. When she was in the ashram in India Muktanand came to love a shortened form of the Durga Path (32 names of the goddess Durga) provided by her teacher Swami Satyananda Saraswati. This new translation is by a North American swami with the same name.
Muktanand has also been reading a book provided by another dear friend. It is titled “Sometimes Hearts Have to Break” and subtitled “25 inspirational journeys to healing and peace”, written by Petrea King. Most of the stories are about people who have lived with/died from cancer, but the inspirational part is about how they work through their particular issues. One of the issues Muktanand is working with is letting go of feeling responsible. For example Muktanand was thinking (as you do when you have a life-threatening illness) that if she was going to die she would like to die at home surrounded by her friends. But then she started to worry about how all her friends were going to be fed!! Sakshi and I thought this was hilarious but Muktanand didn’t think it was funny. You can be the judge. [Of course Muktanand insists she wasn’t worrying, just “considering”.]
Tomorrow (Monday 11 March) Muktanand will be consulting her GP for the first time in several weeks, and will attend QRI for a planning session for her next series of radiation treatments (to her right femur). She will also be returning home to Rosary Crescent for the duration of these treatments.
Muktanand will let you know when she is well enough to receive visitors or talk on the phone.
Love from both of us.
John & Muktanand
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Email #13 Monday 18 March 2002
To Everyone
For Muktanand this has been a week of generally positive developments, commencing with a Monday 11 March appointment with her “specialist” GP (he specialises in complex conditions such as Chronic Fatigue Syndrome, and has a lot of experience with cancer patients). It was the first appointment for 3 months, following his diagnosis of bone cancer.
On Sunday 10 March Muktanand and I had identified stomach ulcers as a possible cause of Muktanand’s nausea, speculating an opportunistic helicobacter infection was the culprit. It seemed clear the problem was at the stomach end rather than the bowel end, because the nausea commenced just after eating. We also discussed hydrotherapy as a form of physiotherapy that would allow Muktanand to exercise her legs without putting any weight on her hip joints.
Muktanand’s GP confirmed both of these assessments, although in his opinion she had developed stress ulcers rather than infection ulcers, and her stomach lining had been stripped by the medical treatments, nausea and diarrhoea she had suffered. Later he told me stress ulcers were quite common with cancer patients receiving radiotherapy, and the condition should have been diagnosed much earlier. When I asked why the cancer specialists hadn’t picked it up, his polite response was that specialists “specialise”. For Muktanand he prescribed an anti-ulcer drug called Zoton (Iansoprazole) which worked like magic as soon as she started taking it. He also prescribed Slippery Elm to reduce stomach acidity. By Thursday Muktanand was able to give up all anti-nausea medications, including cannabis. Of course as soon as she felt better some major issues started to surface, of which more later.
On Tuesday 12 March Muktanand commenced weekly acupuncture treatments with Jiang.
Muktanand will start hydrotherapy on Wednesday 20 March. Because the operation and nausea confined her to bed for many weeks she has lost a lot of muscle tone and strength, mitigated partially by what she and Sakshi call the “wiggly-wobbly” machine, a Zenoxy Massager that gently rocks the legs from side to side (whilst lying on your back).
On Friday 15 March Muktanand visited a specialist chemist at Lutwyche to purchase the “Tallberg” suite of vitamins, minerals and amino acids recommended for breast cancer. Tallberg is a Norwegian research immunologist who developed protocols for the amino acid/vitamin/mineral suites that are most helpful for each of the different types of cancer. His protocol also has a procedure for making a specific antidote for each person’s cancer, but Muktanand’s breast cancer was too small to provide sufficient material for this process (it can be done in Australia). [When Muktanand’s surgeon was told about this protocol he exhibited polite interest. When Muktanand asked her specialist oncologists what diet they would recommend, they said diet was not important.]
Today (Monday) Muktanand completed the fourth of five radiotherapy treatments to her right femur (thigh bone). This time the radiation therapists went to some trouble to shield her bowel (ascending colon) from direct or scattered radiation, and the treatment was accepted without any adverse side-effects. This series of treatments was prescribed because of concerns her right femur had been seriously damaged by disease, although there is no risk of fracture with the pin in place.
Last but not least Muktanand returned home to Rosary Crescent. This time she is using the new handrails at least some of the time for her trips up and down the stairs!
Some of you may be wondering how Muktanand has been feeling. She says to tell you that when the last bout of nausea showed no signs of abating after the removal of the opiate patch, she had a period of real blackness and depression. Physically the nausea makes her feel very weak and helpless but this effect is greatly magnified by a psychic dimension, which Muktanand believes is a memory of a “toxic womb” **. [Because of septicaemia from a prior miscarriage Muktanand’s mother was treated with penicillin pessaries for the first six or seven months of pregnancy.]
As soon as Muktanand started feeling better a couple of major issues surfaced. Firstly, she says to tell you that over the course of this week she has for the first time been really been facing the fact she might actually die from this illness. Secondly, it became imperative to tell her mother she had breast cancer, despite concerns it would adversely impact her mother’s health. [Her mother lives in Toukley, NSW, which is a long trip by plane and train.]
After putting in place a couple of support people [that ‘taking responsibility’ thing again], Muktanand phoned her mother on Friday, and was pleasantly surprised at how well she took the news. In fact her mother was a bit pissed off Muktanand hadn’t told her earlier, because for 3 months or so she had been subjected to a whole battery of unnecessary medical tests for angina, nausea and other aches and pains which she now identified as the “psychic backwash” from Muktanand’s disease! The next day she told Muktanand she felt much better and had driven herself to Mass after not being able to drive for 3 weeks.
Now that she has told her mother, Muktanand is much more relaxed about people knowing about her illness [her major concern was the news would seep back to her mother through the yoga and Buddhist networks]. Generally she would prefer this information is not volunteered, but it is OK to share it with people who you think will be genuinely concerned about her health and wellbeing. If possible, she wants to avoid people who immediately after they are told make 20 phone calls of the type “did you hear that Muktanand ….”
Muktanand requests that people do not phone or call in at Rosary Crescent. She will initiate phone calls as she starts to feel better. Cards or letters are good for personal messages to Muktanand, especially because I only clear her personal email once a week. Flowers can be good occasionally, but perhaps check with me first (for example someone has just brought a bunch). Please do not release our email addresses without checking first. And IN RELATION TO THESE EMAILS, please do not forward them to anyone else.
love from both of us, John (Kundan)
** see for example the books by Stan Grof: LSD Psychotherapy 1980; & Beyond the Brain 1985.
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Email #14 Thursday 28 March 2002
To Everyone
Last Tuesday 19 March Muktanand completed the fifth treatment of her third series of QRI radiotherapy courses, and attended for a review consultation with her radiation oncologist, Jonathan Ramsay. Ramsay said the complete absence of pain in the treated areas indicated the radiotherapy had been successful. In response to a question about Muktanand’s spinal secondaries he said pain was the major indicator and since she was not reporting any pain no further treatment was indicated. Ramsay said radiotherapy was more like spot-welding for specific bones and it was not his style to go around the body treating one bone after another. He said the Aredia and hormone therapies should be kicking in about now and the disappearance of pain in spots that hadn’t been radiated – eg the left shoulder blade and right rib – tended to confirm this. He hoped we had turned a corner. He graciously acknowledged Muktanand’s GP had correctly diagnosed stomach ulcers as the cause of her diarrhoea.
Today (Thursday), she attended for another specialist appointment with both Ramsay and medical oncologist John Mackintosh, coinciding with her third Aredia intravenous infusion. I will report on that in the next email.
Muktanand’s carer team has been expanded to manage a weekly routine of regular hydrotherapy and acupuncture sessions. She has now completed 3 hydrotherapy sessions without incident although she finds the exercises boring. Hydrotherapy is said to be very effective in promoting muscle strength without weight-bearing: the hydrotherapists say when you’re immersed up to your neck, 90% of your weight is sustained by the water (the other 10% is why you sink to the bottom).
One friend has been providing Reiki sessions and another friend has been providing over-the-phone sessions in the rebirther style. Other friends have provided tapes of their own yoga nidras to supplement Muktanand’s Petrea King tape. Yesterday Muktanand did her first solo yoga nidra since the January bone scan. She also continues to benefit from customised Bach flower essences and first class reflexology massages from friends far and near. She has found all of these to be very helpful.
Last Saturday Muktanand commenced counselling with John Barnaby, an initiative that has caused us some difficulties because she wants me to be involved. Petrea King says one of the spontaneous tasks shared by people with life-threatening illnesses is “bringing relationships up-to-date”: I suspect this is about to happen to me.
Whereas the first phase of her illness process after the January bone scan was one of contraction, Muktanand is now well into a phase of expansion. She is reaching out for connection to friends and loved ones. If she hasn’t caught up with you yet, she will.
Muktanand says to tell you she feels very weak and vulnerable and helpless. She has let go of being strong and independent, which she thought she needed to be in order to survive. A friend and healer said he “saw” her now as “a baby without an umbilical cord”. The same friend “saw” me as “mother”: I said to Muktanand unfortunately I haven’t got breasts but she was adamant she preferred me without breasts, much to my relief. Muktanand also said that unlike real babies she can appreciate all the care she is getting.
Muktanand has been very moved to receive some beautiful cards and letters (she has such eloquent friends!). Those of you who have attended her yoga classes might also consider writing a few words of appreciation of her as a teacher. Although the cancer may have been developing for as long as 5 years, one of her concerns is that her return to yoga teaching in the 2000 calendar year may have made it significantly worse.
Muktanand sends her love and likewise from me.
John
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Email #15 Saturday 6 April 2002
To Everyone
Muktanand has had a reasonably quiet time since the last email bulletin of 28 March. She has established a daily routine of wiggly wobblys, physiotherapy land exercises and yoga nidras, together with weekly acupuncture, weekly counselling and hydrotherapy sessions three times a week. The counselling is going well (including my participation). The carer team is working well. A number of friends have sent tapes or CDs of their yoga nidras and Muktanand is enjoying her rediscovery of this practice (she went off yoga nidra for many years). Muktanand has also been surprised and delighted with the many beautiful cards and letters of support she has received from all over Australia. These have been very helpful in keeping her spirits up. She has also been talking to more people on the phone and accepting a few visitors.
There are few things more enticing to our cute little yogini than a comfortable piece of floor to practice on. However, getting on and off the floor is difficult when you have crutches and must protect your left hip. Yesterday (Friday 5 April) Muktanand was very pleased to accomplish this for the first time since she fractured her right leg. Yesterday she commenced doing her wiggly wobblies and land exercises on the floor and today she added some yoga postures – the child’s pose and the baby head stand.
On Thursday 28 March Muktanand saw her two oncology specialists, John Mackintosh and Jonathan Ramsay, coinciding with her third Aredia I/V infusion. Prior to the consultation a medical person had told Muktanand her prognosis was absolutely dire because the average statistics for her stage of the disease were very bad. The person talked about palliative care as if it were the only option and ended the phone call after becoming too upset to continue. Consequently Muktanand attended the consultation determined to find out “the truth”.
It turned out the truth was more hopeful. While not disputing the cited statistics, Jonathan Ramsay said it was meaningless to try and apply averages for metastatic breast cancer to an individual case because there was a huge range of variation in outcomes. He said he and his colleagues all had patients who had lived with bone cancer for more than 10 years. He personally had one patient with documented bone tumours since 1985.
Muktanand asked Dr Ramsay whether “remission” meant the scans would be clear. Ramsay explained the medical definition of remission was that the tumours were asymptomatic. He said the chances of long term remission were quite good, even with bone secondaries.
Muktanand asked Dr Mackintosh to specify the aim of her treatment. Mackintosh replied the aim was to shrink the tumours and keep them shrunk for as long as possible – but the treatment would not remove them. He said chemotherapy would not remove the tumours either, but it would shrink them faster. Ramsay added that although chemotherapy might shrink them faster they often returned faster when the chemotherapy ceased, whereas hormone remission lasted longer.
Muktanand asked Mackintosh how long the Aredia treatment would take. He said if it was working they continued it indefinitely. She also asked whether they could surgically remove secondary tumours from the liver, given the liver was one of the few organs that could regenerate. He said they only operate on the liver when it is the primary site of a cancer.
Ramsay said the disappearance of pain from Muktanand’s previous sites and the non-appearance of new areas of pain was a very good indication clinically. Both specialists said the best Muktanand could hope for was that the tumours would shrink and become asymptomatic, and not grow again for a very long time.
Muktanand was considerably cheered by this consultation and commented things didn’t seem so grim. While on the one hand she was comfortable acknowledging the “alternative” view that orthodox medicine was limited, it was nice to be told by orthodox specialists nothing was certain and hope was realistic.
A review soft tissue scan (CT scan chest/abdomen) has been set down for Wednesday 24 April, the same day as Muktanand’s next Aredia treatment. The specialists have previously explained that bone scans can be misleading in the early months of treatment, so soft tissue scans are the preferred means of monitoring progress. [Liver Function Tests are also an indicator and are mildly abnormal in Muktanand’s case.]
A review x-ray of Muktanand’s left hip has also been set for Monday 22 April, followed by an appointment with orthopod Peter Steadman on Tuesday 23 April. This x-ray will indicate whether the triple therapies (radiation, hormone, Aredia) have been effective enough to avoid a left hip replacement.
Muktanand’s secondary bone tumours were revealed by a bone scan on 16 January. Her liver and lung secondaries were revealed by a soft tissue scan on 30 January. Muktanand says for a long time the idea she could die from this disease was just an intellectual consideration. It was easy to “be positive” because she hadn’t fully grasped the seriousness of her situation. After the opiate patch was removed on 4 March she says she became emotionally convinced her death was inevitable and would happen soon. Now she is feeling more hopeful.
Muktanand sends her love and likewise from me.
John
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Email #16 Sunday 21 April 2002
To Everyone
The two weeks since the last email bulletin have been a period of quiet activity and steady improvement in Muktanand’s health. She has continued with her weekly routine of hydrotherapy and acupuncture, supplemented by traditional Chinese herbal tonics and raw vegetable juice (organic beetroot, ginger, apple, carrot, cabbage). She has also maintained her daily routine of wiggly-wobblies (electric massage machine), gentle yoga stretches and yoga-based relaxations.
She wound up her series of counselling sessions on Friday 12 April. She and the counsellor agreed she had achieved the transformation she had been seeking. Muktanand says that something shifted on Sunday 7 April, as if an internal “hollowness and black hole had filled up”. No ultimate cause or traumatic childhood event was ever identified, but she has since then felt “more solid and more optimistic”. She says the counselling sessions were very helpful, but also notes she was very highly motivated by her illness. I was an interested and privileged participant in the counselling and her process. Since her “shift” occurred she has commenced a serious daily meditation practice.
Last Friday (19 April) Muktanand and I went and saw Lord of the Rings, a little adventure she wouldn’t have been able to manage even a week ago. It was our first big-screen movie since Harry Potter & the Philosopher’s Stone in early January, and despite a bladder-defying 3 hours and 20 minutes we both enjoyed it. The movie had an extra dimension for Muktanand because she saw the battle between the forces of light and darkness as a metaphor for her illness. She was particularly struck by a conversation between the wizard Gandalf and the hobbit Froddo: Froddo says he wished the bloody Ring had never come to him and he wished all this had never happened. Gandalf in effect tells him to stop complaining and that what he has to do is decide what he is going to do with the time that’s been given to him.
Despite being tired a lot of the time and artificially propelled into full menopause by her oestrogen-blocking medication, Muktanand has been pleased to discover she still has some libido (I’m pleased too). However, because she is tired she hasn’t been able to answer all the cards and letters she has received and begs indulgence until she is better. Please know that every card and every message of goodwill and support have helped to lift her spirits. Please keep them coming if you feel inspired!
Muktanand is also deeply grateful for the flowers, the special meals and the gift of time and gentle assistance given by her carers.
In the last fortnight Muktanand has started reading more. She even started reading fiction, although the first book she chose – Running Backwards Over Water by Stephanie Dowrick – commences with an account of a woman dying of cancer! Her non fiction choices were The Journey by Brandon Bays, and Near Death by Craig Mitchell. She also dipped into The Tibetan Book of Living & Dying by Sogyal Rinpoche, Songs of Strength (Sixteen West Australian Women Talk About Cancer), Healing & the Mind edited by Bill Moyers and An Introduction to Parapsychology by her old University of New England lecturer, Harvey Irwin. [The yogic equivalent to the Tibetan Book of the Dead is the Garuda Purana, but Muktanand has never seen an English translation of it.]
Muktanand had been intending to buy The Journey and was delighted when a friend left it as a gift. It is the story of a woman who claims she completely disappeared a “football-sized tumour” in six and a half weeks by uncovering and processing emotional issues stored at the cellular level. Muktanand read it all the way through but found it irritating, largely because it presented the process as being so easy and so quick. She also commented that in Petrea King’s collection of cancer stories people resolve their issues, heal themselves emotionally and grow tremendously, and yet they still die!
The Craig Mitchell book is a collection of Australian stories about near-death experiences, which Muktanand cross-referenced to Harvey Irwin’s review of the research and the Sogyal Rinpoche book. With these books she was looking for some clues about the process and experience of dying. Near death experiences only happen to about 20% of people who nearly die, so they can’t be accessed intentionally (notwithstanding the movie Flatline). Muktanand was very interested in the detailed Tibetan prescription of practices for dying but felt that in reality they would be too complicated and too much like hard work. On the other hand she was pleased to find Sogyal Rinpoche endorsing what she herself had found: that when you are too sick to meditate, the best thing to do is to try and relax as deeply as possible. Muktanand thought deep relaxation might also be the way to go when dying (whenever that might be, she doesn’t expect it to be soon).
Muktanand thought the Songs of Strength book would be a good book for someone just diagnosed with cancer but for her it was a bit late. In the Bill Moyers book she was pleased to find that research described in an article by Margaret Kemeny indicated the intense expression of BOTH sad and happy feelings increased the positive activity of the immune system. She has always thought that it is okay to feel sadness and grief about her illness rather than trying to be artificially positive.
Last Wednesday 17 April another shift seemed to take place. Instead of waking at 4 AM and thinking anxious thoughts until rising at 7 AM, Muktanand started sleeping in until late and enjoying it. At the same time although she still felt tired she no longer felt depressed (the two have normally gone together for the last couple of months). As well as feeling better she looks better, almost normal. She still has no pain and no new sites of pain. She has also had a number of dreams in which she is walking without crutches, and is hoping she can start doing that this week.
Love from both of us.
John
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Email #17 Sunday 28 April 2002
Dear Friends
Some good news at last. Muktanand will not require a hip replacement operation and she will not require chemotherapy. The treatments and everything else she is doing are moving things in the right direction. She has been told to discard one of her crutches but otherwise needs to maintain her program. She sends her heartfelt thanks for your prayers, kind thoughts and mantras, as well as letters, cards, flowers and other sustenance. She celebrated with her first cup of chai for a couple of weeks (she has given up chai in favour of vegetable juice).
The above paragraph may be all you want to know. What follows is largely an attempt to make sense of the medical detail.
Liver
The first inkling of good news came on Monday 22 April when Acupuncturist Jiang Man told Muktanand her pulses were stronger than they had been for some weeks. Only the previous week (17 April) Jiang had said Muktanand showed signs of “liver stagnation”. Although Chinese Medicine “liver” is by no means the same as Western Medicine “liver”, this assessment had been consistent with a slowly worsening trend in Muktanand’s LFTs (liver function tests measured in blood samples).
Left Hip
Also on Monday Muktanand had a plain x-ray of her left hip and pelvis. On Tuesday 23 April we had a consultation with orthopaedic specialist Dr Peter Steadman. Somewhat to our disappointment he said in his opinion the x-ray picture was unchanged from the previous x-ray on 12 February. In fact according to the radiologist’s report there had been a slight worsening: “there is a permeative pattern of bony lysis within the left acetabulam measuring 4.5 cm in size which has increased slightly in diameter compared with the previous study.”
The dictionary says a lysis is an area of decomposition or destruction. Steadman first described this area as a “cyst”, but when we asked what he meant he said a “destructive cancerous deposit” with a “honeycomb” structure. He said our disappointment was misplaced because he hadn’t expected any change in the x-ray. He said although bone tumours secondary to breast cancer usually “fill in” this sometimes didn’t happen. There was also no point in having another x-ray in 6 weeks because he still wouldn’t expect any change. However, the radiation treatment to the area would have killed 99.9% of the cancer cells. A repeat bone scan in about 4 months would be an appropriate form of review. He said several times his role was not to treat x-rays but to treat pain, and since Muktanand was not complaining of any left hip pain there was nothing to treat. He said a hip replacement would only be necessary if the head of the femur started to bore through the hip socket. As on other occasions he couldn’t resist telling us one of his “gruesome stories”, this time about a Rockhampton man he’d just “patched up”, whose femur had bored right through the hip socket (acetabulam) and pelvis almost to the top of his iliac crest (around about waist level)!
Steadman said Muktanand should move onto one crutch for six weeks and then try going without crutches completely. Although we tried to pin him down as to how strong the hip was he would only say Muktanand shouldn’t carry heavy luggage.
The key to our misapprehension was the understanding that all bone cells are replaced every 3 months. In fact there is a lot of variation. The standard physiology text by Tortora & Anagnostakos states that while the knee end of the femur (thigh bone) is normally replaced every 4 months, certain parts of the femur shaft are not completely replaced in an individual’s lifetime. On Friday 26 April Muktanand’s hydrotherapy physiotherapist explained that because of the poor blood supply to the area it would probably take about 5 months for the acetabular part of the pelvis to heal. He was keen for Muktanand to continue hydrotherapy for another month and to walk as much as possible, including walking up and down stairs. He said however she should definitely avoid jumping up and down on her left leg!
Right Femur
On Tuesday Peter Steadman was also at pains to say the right Lesser Trochanter – the small bone that got ripped away from her femur on 29 January – was now stabilised in a position near the femur, as he had predicted. Previously he also predicted the hip muscle attached to the Lesser Trochanter – the Major Psoas – would be permanently contracted and dysfunctional and that other hip flexor muscles would have to take up the load. However, the hydrotherapy physiotherapist said on Friday that “clinically” (from personal examination) Muktanand’s right Major Psoas was working quite well. This seems to be another piece of good news, although the contradictory views are a bit puzzling.
CT Scan of Chest, Abdomen & Pelvis
On Wednesday 24 April Muktanand had her second soft tissue CAT scan followed by her fourth Aredia bone-strengthening treatment. Side-effects from the latter include tiredness and headaches and usually last for about a week.
Some relevant extracts from the CT scan report are: “The nodules in the lungs appear smaller or have in some instances disappeared. The largest lesion is approximately 7 mm in size … There are multiple lesions in the liver but some of these appear smaller than on the previous occasion. The largest lesion measures 3 cm … There is a lytic lesion in the left acetabular roof measuring 3 cm in extent.”
In plain English this meant some of the lung secondaries had disappeared and others had shrunk, and the liver secondaries had also shrunk. Oncologist John Mackintosh said both organs looked quite a bit better in his opinion, particularly the lungs. He explained the liver could take a while to show improvement. Lesions in both organs were predominantly small (so small in the lungs that they don’t show up on a chest x-ray). He said even though the response to treatment was not unusual for hormone-sensitive cancers, the improvement in Muktanand was better than average. The improvement would also be mirrored in her bones, as there would not be progression in one area and regression in another. Hormone treatments took a while to work and Muktanand was probably just starting to see the results. The improvements were the reason she was feeling better.
The same-day blood test result was an additional cause for celebration. For the first time in 6 months the liver function enzymes were normal! The only anomaly was a low urea reading, almost certainly reflecting Muktanand’s low protein diet. Mackintosh commented her haemoglobin was also looking a bit better.
Mackintosh said the CT scan meant there was no need for chemotherapy. He would only have recommended chemotherapy if the secondary deposits had been getting larger. He said Muktanand needed to continue with her Femara and Aredia treatments and a repeat scan was appropriate in about 4 months. In a remarkable display of feeling he actually jumped up out of his chair and shook Muktanand’s hand.
Petrea King
Muktanand has been given another Petrea King book, this one called Spirited Women: Journeys with Breast Cancer. It is a book she would have liked to have read earlier. Three points of particular interest to her were: (a) radiotherapy is commonly accompanied by depression; (b) the tiredness caused by radiotherapy usually persists for about the same period of time as the course of radiotherapy; and (c) because of its strong detoxifying effect, fruit juice is not good for nausea. King says vegetable juice is better than fruit juice, both because of its nutritional factors and its gentler detoxifying action (PK is a trained naturopath).
Women’s Stuff [men can skip this bit]
It’s a sign of how much better she feels that Muktanand is now complaining a lot about her hair style. During the period covering her two hospital admissions she was intensely frustrated by her inability to get to her hairdresser. At the first opportunity she dropped her previous spiky look in favour of a softer wavy style, but now she judges this to be a “non-style”. She wants a hair cut “that looks good and is easy and practical to look after”. She also wants to let her hair revert to its natural colour – whatever that may be – with or without the occasional grey hair.
She looks pale – she has always looked pale – but her skin is clearer and she is less drawn than before the cancer diagnosis. She looks a lot better than you would expect of someone who has been through what she has just been through. Because of nausea-induced starvation and muscle wasting she has noticeably lost weight around her hips and thighs (supposedly every middle-aged woman’s dream) – but she does not recommend her experience as a weight-loss program! Her major health symptoms are constant tiredness and 24-hour hot flushes (plus aches and pains in the thigh that was operated on), but she is laughing and smiling a lot more, and sometimes I see flashes of the 22-year old Muktanand before she went to India.
Om Chanting
Muktanand has said previously that if she were dying from this illness she wished she could have relay teams of Om chanters by her bedside. Hopefully it now looks as if volunteers won’t be needed for a long time.
Muktanand sends her love and likewise from me.
John
PS: Jackie Freeman has written that two English translations of the Garuda Purana are advertised on the Net, one by Ernest Wood & Naunidhirama, the other by J L Shastri. Details are available if desired.
PSS: If you want to write to Muktanand via email just send it to this email address with “Dear Muktanand” in the Subject line.
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Email #18 Wednesday22 May 2002
Dear Friends
Muktanand continues to be well without any dramatic changes. Although she complains about how boring it is (compared to yoga), she has found the hydrotherapy very helpful in regaining the proper use of her legs – it was not sufficient to practise walking on level surfaces and up and down stairs. She has been getting around the house without crutches and on Thursday 16 May she went crutchless to hydrotherapy for the first time. She is doing a lot more things for herself, eg showering and washing-up. The only source of pain is her right thigh (the one with the pin in it), and the pain is interfering with her sleep.
She continues to be tired most of the time and she is sleeping 10-12 hours a night. Although her hair has been irritating her for some weeks she has been too tired to do anything about it. Last Saturday she passed the point where she no longer cared how she looked and got another haircut, this time in a more gamin style with a fringe. Making the effort is another good sign although almost immediately she found the fringe irritating! The beautiful Brisbane autumn weather has encouraged lazy days. Her spirits are good although she knows she is still in great danger.
Obviously she will continue with her current combination of therapies because they are working, but this does not exclude adding more therapies. It is impossible to determine which therapy is making the biggest contribution but Muktanand feels they are all important, including the specialist therapies, traditional Chinese medicine, diet, special supplements and, last but not least, emotional support.
Naturally the oncology specialists believe their therapies – Femara (hormone therapy), Radiotherapy and Aredia (bone cancer therapy) – are the only effective therapies. Soon after she was diagnosed Muktanand asked the specialists about diet but they said there was no research showing diet made any difference [the orthodox Western medical view]. Around the same time Muktanand’s GP was telling her about the Tallberg research, which sets out specific dietary protocols for the treatment of each of the major types of cancer. Because this is of interest to at least some of the readers of these emails, some details follow.
Tallberg Protocol
Thomas Tallberg is a medical scientist at the Helsinki University Central Hospital who has been developing his cancer treatment for over 25 years. Because of the dangers involved in trying to reduce his theory to plain English, I thought it best to quote from his article (Journal of the Australian College of Nutritional & Environmental Medicine, 1996 V15/1). I have tried to pick out the bits that make most sense but some of the language is very technical. Skip it if you like but be assured some readers of these emails will be interested. Tallberg’s starting point is that the existence of rare spontaneous remissions means there must be a physiological way to correct the conditions leading to cancer.
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“The proven spontaneous regression of established tumours in animals as well as in human patients, or following administration of certain natural remedies such as amino-acids and trace elements, together with the positive trend in chemo-prevention of cancer effected by certain vitamins alone, indicate there is a real physiological possibility of treating clinical cancer using certain combinations of biomodulating natural remedies …”
“The working hypothesis is thus, that cancer, when finally detected and diagnosed as malignant uncontrolled cell proliferation, is the ultimate expression of a long-standing metabolic deficiency leading to faulty gene-transcription, causing the regression of specialised tissue cells into a primitive embryonal state. These cancer cells will then, in the patient, use simple natural growth factors to proliferate. These ‘elementary’ cells, in an otherwise healthy organism, should consequently be deprived of their dietary growth factors until the aetiologic metabolic deficiency has been corrected by supportive dietary measures, preventing regression of additional cells to a state of uncontrolled growth.”
“There seems also to be a necessity for physiological correction of certain hormonal imbalances affecting the cell receptor mechanism as displayed in patients suffering from breast cancer or prostate cancer. Furthermore, one should, in the cancer patient, try to correct a concomitant, possibly depressed defence mechanism by means of active specific immunotherapy employing autologous tumour material polymerised by natural peptide bonds.”
“Immunity is obviously not the primary aetiologic factor in cancer. As certain tumour cells definitely carry tumour marker antigens, it is, of course, always wise to try to save an ample amount of the tumour tissue … [to prepare an autovaccine]. Autologous material is the optimal source, irrespective of whether the tumour is induced by carcinogens or viruses. ”
“In cancer patients the lymphocyte function is often depressed. One reason for this may come from the finding that neurogenic lipid components in certain patients have leaked out through the blood-brain barrier into the serum. … [this can be compensated] by feeding the patient with the missing neurogenic lipid factors in the form of cooked brain, or ether-alcohol extracts …”
“Physiological doses of vitamins are prescribed only to improve the general condition of the patient and because the resorption of trace elements is furthered. Vitamin C may to a certain degree shield the patient from particular viral infections …”
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For breast cancer Tallberg’s research generates the following bio-immunotherapy protocol (Table 13):
1. Immunization using autologous tumour material.
2. Essential trace elements administered as biologically active salts Cr, V, Sn, W & Mg.
3. Protein-free diet (until dangerous amino acids have been delineated). Test amounts now used: Asp, Lys.
4. Physiological dose of vitamins A, B, C, D, E & K.
5. Vaccinations against influenza virus strain A and B.
6. Diet containing neurogenic lipids.
7. Oestrogen inhibitors (Tamoxifen) as compulsory hormone treatment.
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For Muktanand, the above protocol worked out as follows:
1. There was insufficient tissue from Muktanand’s breast cancer to generate an autovaccine (there is a laboratory in Melbourne that prepares these).
2. The trace elements – chromium, vanadium, tin, tungsten, magnesium – are prescribed in the form of a prepared solution. In Brisbane the only source of Tallberg prescriptions is the Wilmar House pharmacy in Lutwyche.
3. Protein-free diet with prescribed amino acid supplement powder consisting of 500 mg each of aspartate and lysine, taken twice a day. Protein-free means animal protein-free.
4. Vitamin A 8000 IU/day; Vitamin D 800 IU/day; Vitamin B – 50 mg each of B1, B2, B5, B6, B12 per day; Vitamin C 2 gm/day sodium ascorbate powder; Vitamin E 500 mg/day; Vitamin K 20 mg/day.
5. No flu vaccinations – opposed by her GP.
6. Neurogenic lipids from either flax seed oil or cooked organic sheep’s brain (100 gm 3 x week). According to Wilmar House pharmacist Ramona, Tallberg’s research found the sheep’s brain source to be twice as effective as flax seed oil.
7. Femara (superior to Tamoxifen where there are secondary cancers).
Muktanand started the Tallberg diet on 16 March but in a modified form as recommended by her alternative GP. The modifications are:
(a) Co-enzymeQ10 at 300 mg/day;
(b) Ginkgo Biloba 2700 mg/day;
(c) Formula 33SE – mainly for Selenium 100 mcg/day;
(d) Betamax formula of Shitake mushroom powder (Lentinula Edodes) 1000 gm/day; (d) Melatonin 3 mg/day (soon to be boosted to 10 mg/day); and
(e) boosting of Vitamin A from 8000 IU to 20,000 IU in three steps commencing 25 April with concomitant boosting of (protective) Vitamins D and E to 2000 IU and 750 IU respectively (plus monitoring of mouth and eye dryness for symptoms of Vitamin A toxicity).
The most notable features of the modification are the megadoses of ENQ10 and Vitamin A. Ramona said there was no problem in varying the vitamin doses, but Tallberg’s research indicated selenium made no difference. She was a bit concerned about the zinc and other trace elements in Formula SE33 because there was a risk of counteracting the Tallberg formulation “based on 25 years of sound research”. The zinc and selenium supplements have been strongly recommended by Muktanand’s GP.
New Therapy
The newest addition to Muktanand’s therapies is a moxibustion method that pumps both heat and “Biwa Kyu” vapour (loquat leaf solution) into the body. The high-tech Japanese kit that delivers this has been imported into Brisbane as a special act of loving kindness by former housemate Jacki Freeman. Jacki also brought a fascinating demo video by Edward Obaidy, a leading exponent of the Japanese school of acupuncture who occasionally visits Australia.
Ram Dass
Muktanand has continued her investigation of death and dying (from her new perspective) with Ram Dass’s most recent book, Still Here. Many years ago Ram Dass started spendng a lot of time “hanging out with people who were dying”, and then in February 1997 he nearly died from a stroke himself. So he has some interesting things to say from the perspective of both the carer and the patient.
For example RD argues that although the dying process inevitably involves a number of unpleasant physical sensations, the best way to avoid getting caught up in these is to develop our witnessing capacity long before we die! In relation to the universal fear of death (including his own) RD quotes the description by Emmanuel (a disembodied channeled spirit) who said “Tell them that death is absolutely safe. Its like taking off a tight shoe.” For RD also, death is more like a departure than an ending. His book offers many useful insights into ageing and conscious dying.
How We Die
To Muktanand’s delight RD’s book led her to another book that gives a detailed account of the different ways and processes of dying. This is the information she had really been seeking. The book is How We Die by Sherwin Nuland (1994), WHICH I just happened to have in my home library (there is some merit in being a bibliophile!).
People have different ideas of what constitutes a “good death”, varying from the fully conscious to Woody Allen’s “I don’t mind dying – I just don’t want to be there when it happens.” Muktanand has previously been told her diagnosis is a blessing because it allows her to consciously prepare for her death. To Muktanand’s surprise Nuland’s book revealed that a “good death” is only experienced by a small percentage of people. This is how Nuland puts it:
“By and large, dying is a messy business. Though many people do become ‘unconscious and unconcerned’ by lapsing or being put into a state of coma or semi-awareness; though some lucky others are indeed blessed with a remarkably peaceful and even conscious passage at the end of a difficult illness; though many thousands each year quite literally drop dead without more than a moment’s discomfort; though victims of sudden trauma and death are sometimes granted the gift of release from terror-filled pain – conceding all these eventualities – far, far fewer than one in five of those who die each day are the beneficiaries of such easy circumstances.”
In what might be described as the motive for writing his book, Nuland goes on to say: “Accurate knowledge of how a disease kills serves to free us from unnecessary terrors of what we might be fated to endure when we die.”
Cancer is a leading cause of death so Nuland has a couple of chapters on dying from cancer It is fair to say he takes a fairly dark view, for example devoting a whole chapter to warning cancer sufferers against false hopes. In the other chapter he argues it is more accurate to describe cancer cells as malevolent rather than malignant, because of their killer tendencies. The following extract illustrates his viewpoint:
“Cancer, far from being a clandestine foe, is in fact beserk with the malicious exuberance of killing. The disease pursues a continuous, uninhibited, circumferential, barn-burning expedition of destructiveness, in which it heeds no rules, follows no commands, and explodes all resistance in a homicidal riot of devastation. Its cells behave like the members of a barbarian horde run amok – leaderless and undirected, but with a single-minded purpose: to plunder everything within reach. …Its first cells are the bastard offspring of unsuspecting parents who ultimately reject them because they are ugly, deformed and unruly. In the community of living tissues, the uncontrolled mob of misfits that is cancer behaves like a gang of perpetually wilding adolescents. They are the juvenile delinquents of cellular society.”
After reading a few chapters of Nuland, Muktanand has given this type of reading a rest. She is due to have her fifth Aredia treatment tomorrow. If it follows the usual course she will suffer headaches and more tiredness for the next few days. She thanks everyone for your various gifts, whether it be cards, letters, books, food, thoughts, prayers or caring.
Muktanand sends her love as do I.
John
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Email #19 12 June 2002
Dear Friends
Muktanand had her fifth Aredia treatment on Thursday 23 May. On this occasion she had no side-effects, apart from one night’s insomnia caused by the “pre-med” hydrocortisone injection. Her sixth Aredia infusion is due on Thursday 20 June. For those of you who are interested, I have collected some information about Aredia at the end of this email.
Muktanand’s monthly blood test was normal. Her haemoglobin was down marginally but still within normal range. Her lymphocytes were low but this was not surprising as they are adversely impacted by the Aredia and radiotherapy, as well as by the cancer. Most importantly, her liver function tests were normal.
In response to Muktanand’s complaint of disturbed sleep, specialist Mackintosh thought this might be caused by Femara, her oestrogen-blocking medication. He ordered a blood test of her oestrogen levels, and on 30 May phoned to say her oestrogen was less than the detectable threshold. He said he was very pleased with this result as it indicated the Femara was working very effectively [and Muktanand will just have to put up with hot flushes waking her at 4 am in the morning].
In the last email I wrote the Mater Hospital specialists said diet didn’t matter. Muktanand has reminded me they did recommend a low-fat diet, although I must confess I thought this is what doctors said to everyone, regardless of their disease. However, Muktanand says there is actually quite a lot of research indicating that diets high in animal fat are a risk factor for breast cancer.
On the Saturday after her Aredia treatment Muktanand commenced an evening pranayama practice (bastrika and nadi shodhan), mainly because she finds it enjoyable. She says a therapeutic pranayama practice would require 3-6 hours daily and she is simply too tired to attempt anything like that. Conservation of her limited energy is still a major issue for her.
On Tuesday 28 May Muktanand attended a hydrotherapy appointment with her Wesley Hospital physiotherapist, Martin. After reviewing her x-rays and testing her leg/hip muscles, Martin reported she was greatly improved, rating her 5 out of 5 for all movements except one movement on her (weaker) left side, which he rated at 4 and 3/4. He said she could cut her hydrotherapy to one session per week but she should start walking at least 3 times per week. Muktanand was very pleased to reduce her hydrotherapy as she was finding the heat and heavily chlorinated water were giving her headaches and making her feel enervated. Because of rainy weather her first walk was delayed till 2 June
On Friday 30 May Muktanand’s mother announced she would be coming to Brisbane for a visit on the 13 June (tomorrow). This was after I inadvertently leaked that Muktanand was getting around without crutches, not knowing this was the agreed precondition for a visit. Eleanor will be here for the best part of a week and will probably be surprised at how well Muktanand looks [a 1995 survey of 200 women with metastatic breast cancer revealed the public generally perceived them as “near death – with little or no time to live”].
For most of the past month Muktanand has been feeling good and on some days “even happy”. Since getting off crutches she has started some of the little projects she had long been itching to do, like weeding the garden and cleaning out the fridge [admittedly the latter hadn’t been cleaned for 3 months]. The big projects – like a complete redecoration of the house?! – have been put aside for the moment. She has found these activities thoroughly enjoyable although she has been surprised at how quickly she tired (but this is improving).
For some time the Sydney Morning Herald newspaper has been running a series of weekly interviews with the theme “If I Had a Year to Live”. Muktanand has only read a few, but she says all the ones she has read assume they will be healthy up until the day they die, a very unrealistic assumption for anyone with a terminal illness.
When her January bone scan showed widespread metastatic disease Muktanand’s first reaction was she was not ready to die. She is now confident she will be ready to die whenever that happens.
Muktanand says it would be fabulous if all the cancers disappeared by the time of her next scan at the end of August. She says deep inside she believes she is getting better and she will recover, but she would love to have more certainty. She accepts she will just have to get accustomed to living with the uncertainty.
On 2 June Muktanand dreamt about having a hair cut and then the following night she took a phone call offering a special introductory deal at a new hair salon – Precision Haircuts – in Highgate Hill. This was obviously a cosmic message and she enthusiastically embraced the offer.
On Thursday 6 June Muktanand drove herself to the dentist, the first time she has driven the car by herself since early January. It looks like my chauffeuring duties (and those of the caring team) will soon be over.
Reading
West End acupuncturist Phil Vanderzeil loaned Muktanand a copy of a new book by Henry Osiecki: “Cancer. A Nutritional/Biochemical Approach” (2002 Bioconcepts Publishing). Apart from oxygen therapy and a pineapple bromaline preparation, Muktanand said she was already doing everything Osiecki recommended.
Osiecki recommends 3 cycles of oxygen therapy at 2 hours/day for 18 days during radiotherapy and chemotherapy. Muktanand’s alternative GP commented the benefits were unpredictable. In any case home oxygen (from a cylinder) is incredibly expensive. Muktanand had previously investigated hyperbaric therapy (delivering oxygen in a pressure chamber) but the unit at the Royal Brisbane Hospital said they didn’t take patients with metastatic disease. A private Brisbane firm offering hyperbaric therapy was too overtly commercially and cosmetically oriented to generate any reasonable level of confidence. There is more information about hyperbaric therapy at http://www.baromedical.com/about/about.html. Muktanand’s GP said the bromaline preparation was a useful treatment for inflammation but not appropriate at present.
Kathy Turner loaned Muktanand a copy of “Remarkable Recovery. What extraordinary healings tell us about getting well and staying well” by Caryle Hirshberg & Marc Ian Barasch (1995 Headline Book Publishing). Muktanand found this book “incredibly entertaining” and thought it would be a good book to give people hope.
Muktanand has also taken a break from non-fiction with “Ash” by Mary Gentle and “The Poisonwood Bible” by Barbara Kingsolver. She thought the latter was extremely well written, as well as being a story about a family dynamic that reminded her of her own childhood.
Aredia
Not long after her diagnosis oncologist David Thomas told Muktanand Aredia had revolutionized the treatment of breast cancer since it became available in Australia in about 1998. The following quotes give some idea of how it works. The first quote is from the Imaginis Corporation, on a web page devoted to Stage IV breast cancer:
“Approximately 25% of breast cancers spread first to the bone. The bones of the spine, ribs, pelvis, skull, and long bones of the arms and legs are most often affected. There are two types of bone metastases: osteolytic and osteoblastic. With osteolytic metastases, the cancer eats away at the bone, forming holes. This most often occurs in the legs, hip, or pelvis. Osteoblastic metastases actually increase bone mineral density but also cause bones to fracture easily. Both types of bone metastases cause pain.”
Muktanand’s bone cancers are osteolytic, not osteblastic. The next quote is from CenterWatch, a ‘Clinical Trials Listing Service’:
“Aredia was approved by the US Food & Drug Administration (FDA) in August 1996. Aredia is the first drug that has been proven to reduce the incidence of skeletal complications of metastatic breast cancer, thereby reducing the need for radiation therapy or surgery to the bone. It has also been shown to provide relief of bone pain caused by metastatic breast cancer, thereby reducing the need for narcotic analgesics … The most frequent side effects were fatigue, fever, nausea, vomiting, anaemia, and skeletal pain.”
Currently, Aredia is the only FDA-approved bisphosphonate to treat breast cancer patients with bone metastases. At least 6 other bisphosphonate drugs that have also shown promise in alleviating symptoms of bone metastases are under investigation.
The third and final quote is taken from an information leaflet published by the manufacturer of Aredia, Novartis Pharmaceuticals:
“Bone is a living tissue and, just like other parts of the body, it is constantly being renewed. This process is called bone remodelling. Remodelling involves two types of bone cells – osteoclasts, which break down old bone and osteoblasts, which make new bone. In patients with particular diseases, this process can be become unbalanced, and the osteoclasts in some bones are overactive and break down more bone than is being deposited. This results in a weakening of the bone which can cause pain and sometimes makes the bone more susceptible to breaking.
In certain diseases, the osteoblasts may also try to work faster to replace the lost bone. The new bone that is formed may be thicker but weaker than normal, which can also cause pain and may lead to fractures.
Aredia belongs to a class of medicines called biophosphonates. The active ingredient in Aredia is called disodium pamidronate or APD. Aredia is used to protect your bones by slowing the breakdown of bone by the overactive osteoclasts. It works by preventing the osteoclasts from attaching themselves to your bones. In this way it helps the bone remodelling to return to normal and protects the bones from being weakened.”
For more information see: http://www.centerwatch.com/patient/drugs/dru154.html
Muktanand sends her love as do I.
John
PS: Several English language research papers by Thomas Tallberg can be found at http://www.acnem.org/journal/contents/articles_1996-2000.htm. His therapy has only been tested in a few relatively small-scale randomized controlled clinical trials for advanced renal cell carcinoma and malignant melanoma. His recommendations for breast and other cancers has been extrapolated from these studies plus anecdotal evidence.
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Email #20 20 June 2002
Dear Friends
Muktanand had her sixth Aredia treatment today. It all went pretty smoothly except it required 3 attempts to get the canula into her vein (she has small veins). Her blood test was basically normal except for some slightly low results for lymphocytes and urea – as in the previous test – and a slightly low red blood cell count. Once again, her Liver Function Test was normal, with two parameters continuing to show improvement.
As flagged in the last email Muktanand’s mother, Eleanor Matthews, has been to Brisbane for a visit, her first since the diagnosis of the breast cancer. Eleanor is a very sweet lady with distinguished looking pure white hair. Despite being a frail 76 years she travelled to Brisbane by train, sitting up all night in a first class apartment. Before leaving she confided to me it was better for her not to be here, because Muktanand just fussed over her instead of resting and getting better. She said, however, that if she is needed we need only call and she will be up here the next day.
Eleanor’s husband for 25 years, Roy Matthews (Muktanand’s stepfather), is also sweet, but a very frail 89 years. He is an old-style Christian Scientist who believes avidly in the power of prayer over disease, and he avoids doctors as much as possible. Like Muktanand, he is a great fan of the historical romances by Georgette Heyer.
Muktanand continues to have weekly acupuncture treatments with Jiang Man.
Over the last weekend Muktanand had a couple of dreams about doing Bhujangasana, the cobra pose. She is convinced a strong practice would ease the muscle pain she is still getting in her right leg, but has avoided doing it because of the risk of a fracture in her (cancerous) lumbar vertebrae. Although the dream may mean it is safe to perform the practice, she has decided to wait until the review bone scan in mid-August.
Breast Cancer Statistics
Every now and again Muktanand comes across breast cancer statistics. The following example comes from the Stage IV breast cancer website at http://www.imaginis.com/breasthealth/metastatic.asp:
“According to the National Cancer Institute, approximately 10% to 20% of women with metastatic breast cancer survive the disease (achieve permanent remission).”
Another example comes from a breast cancer article in Time magazine (18/2/02), which stated that for Stage IV tumours:
“Most treatments are aimed at relieving symptoms or prolonging life a few months or years. Studies indicate an average survival time of 18 months to 24 months. From 15% to 20% live at least five years after diagnosis.”
Muktanand can’t help being affected by these statistics, even though her Mater Hospital specialists have regaled her with stories about metastatic patients living for ten years or more. And although she has appreciated the many stories of breast cancer survival provided by friends, she has noted that none of these friends (or friends of friends) had Stage IV cancer (there is no Stage V). How then, to interpret the statistics sensibly? The obituaries published after the death of Stephen J Gould prompted me to follow up his article on cancer statistics, published on the Web at http://www.cancerguide.org/median_not_msg.html.
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Stephen Jay Gould
Gould was a famous populariser of biology and evolution. The following extracts are taken from his article “The Median Isn’t the Message”.
“Statistics recognizes different measures of an ‘average’, or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers. The median, a different measure of central tendency, is the half-way point …A politician in power might say with pride, ‘The mean income of our citizens is $15,000 per year.’ The leader of the opposition might retort, ‘But half our citizens make less than $10,000 per year.’ Both are right, but the first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).
“In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos … The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery.
“The problem may be briefly stated: What does ‘median mortality of eight months’ signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as ‘I will probably be dead in eight months’ – the very conclusion that must be avoided, since it isn’t so …
“We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries …This Platonic heritage … leads us to view statistical measures of central tendency … as the hard ‘realities’, and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the ‘I will probably be dead in eight months’ may pass as a reasonable interpretation.
“But variation … is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
“When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
“Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call ‘right skewed’ …. After all, the left of the distribution contains an irrevocable lower boundary of zero … Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives.
“The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief.
“One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter.”
Postscript: Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.
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Neither Muktanand nor I have been able to find a graphical representation of breast cancer statistics, but we suspect the breast cancer distribution curve is also skewed to the right, as in Gould’s case. In the book Remarkable Recovery it says cancer statistical means are normally counted by excluding the “outliers”, that is the cancer patients who live for many decades after diagnosis and treatment. This suggests a very long (small) tail on the right of the graph. Even if the graph is not skewed, it is worth trying to identify the factors that will determine which part of the graph Muktanand is likely to fall into.
In Muktanand’s case her negative factors are: a very late diagnosis; widespread bone metastases necessitating large doses of (sickening) radiation; a cancer-driven pathological bone fracture with the associated trauma of a major operation; and long-standing Chronic Fatigue Syndrome, which both reduced her immunity and masked the development of the cancer.
Muktanand’s positive factors are: diagnosis at a relatively young age; access to high quality Western medical care; access to high quality complementary medical care; a cancer that is highly sensitive to oestrogen; access to Aredia, a new drug with proven effectiveness in preventing and reversing the growth of bone metastases; a wide circle of supportive and caring friends; a diet and dietary supplement protocol based on the Tallberg research; a love of yoga coupled with more than 25 years of regular practice; and evidence of secondary cancer shrinkage only 3 months after diagnosis, thus avoiding the need for (very sickening) chemotherapy.
Overall there seems to be a realistic case for placing Muktanand in the population to the right of the average survival time (that is, better than 18-24 months), but how far to the right is unknown. Naturally, Muktanand would hope to be in the 15-20% who survive for more than 5 years. [It is important to remember the 18-24 month average requires that a large number of Stage IV patients die before 18-24 months.]
The other point about such averages is they measure the central tendency of a very varied population, including a wide range of ages. Thus, for example, you would expect the survival distribution for a Stage IV population selected for women with the same age as Muktanand to have a better outcome. [Although this is just another way of saying Muktanand’s age would tend to put her to the right of the average survival time.]
None of the Mater Hospital specialists has ever so much as hinted at a likely life expectancy for Muktanand. The Mater Community Nurse (responsible for arranging home aids such as commodes, and liaising with the Blue Nurses) was the only medical professional we encountered who stated quite openly she thought Muktanand was going home to die.
The Sydney Morning Herald magazine of June 8 2002 has a story about a Canadian novelist with Stage IV breast cancer, progressing from a Stage III diagnosis in 1998. The story is called “Before Night Falls” and in it the novelist – Carol Shields – is quoted as saying she “has given up hoping”. Elsewhere in the story it says “ the mood in her house is resigned but not downhearted, as if everyone is determined to enjoy every last moment and to stick to some sense of normalcy.” Muktanand has certainly not given up hoping and her mood is anything but resigned: during the last 6 weeks or so her company has been delightful. Nor is there any sense of forced normalcy: on the contrary, Muktanand worries occasionally she is not taking her cancers seriously enough and that she should be doing more.
Muktanand and I watched the The English Patient on video twice between 8-12 June. Muktanand found it intense and absorbing and was very affected by the sad ending – it is a brilliant movie as well as being a great romance.
Yesterday Muktanand was very touched to receive a phone call from an Australian woman who had just been released from 11 days solitary confinement in a Swedish gaol. Liz had been arrested for her role in a Greenpeace action. Some years ago Liz had attended one of Muktanand’s silent meditation retreats and she remembered Muktanand’s story about her long retreat in the ashram “cave” at Monghyr. Liz was phoning to say this story had inspired her to transform her solitary confinement into a yoga retreat (and her cell into a cave), thus enabling her to get through the experience.
Muktanand also visited her new hairdresser, Precision Cuts, yesterday. Although the cut is better shaped it “looks nothing like the picture she showed me”. However, Muktanand has decided to live with a fringe, as she agrees it suits her better (it does).
love from both of us,
John
PS: Muktanand has reduced her Vitamin A intake from 20,000 IU to 16,000 IU, and will reduce it further. This is in line with a plan suggested by her alternative GP, to take the Vitamin A to super-saturation levels for about a month, and then reduce it to more normal recommended levels.
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Email #21, 5 August 2002
Dear Friends
This email is late because Muktanand’s health has continued to improve – slowly but surely. As she has taken on more tasks for herself – eg last Monday she drove herself to acupuncture – I’ve been taking time out to catch up on a number of projects. An additional cause for delay is the difficulty resisting the temptation to bask lizard-like in the beautiful Brisbane winter sun on the back veranda. If there are any major changes to her condition you will be informed very quickly.
Muktanand had her seventh Aredia treatment on Thursday 18 July 2002, accompanied by her regular monthly blood tests. Once again her Liver Function Tests (LFTs) were normal and were still showing signs of small improvements. For the doctors on this mailing list, her S-Alkaline Phosphatase is now a third of its value on 5 March, and her S-Gamma Glutamyl Transferase less than a half. Her LFTs were never grossly abnormal, but the signs of small but genuine improvement are her only objective measure of progress in between scans.
Her blood count shows continuing abnormalities in Lymphocytes (0.97, versus normal range of 1.00 – 4.00) and Red Cell count (3470.0 versus normal range of 3900 – 5600). Haemoglobin and Haematocrit were also both slightly abnormal (112 vs 115 – 165; and 0.33 versus 0. 35 – 0.4). Oncologist Mackintosh says these results are all pretty well par for the course.
Muktanand’s next Aredia infusion is due on Thursday 22 August. She did not experience significant side effects after the July treatment, in contrast to the June treatment which seemed to cause debilitating tiredness for most of the month. It’s possible some of the tiredness was due to the drop in her Haemoglobin.
Dr Mackintosh is keen to have review scans of bones and soft tissues this month. Appointments have been made to have these on Monday – Tuesday August 12-13, just before Muktanand’s birthday on 14 August. Mackintosh acknowledges the bone scan is a bit earlier than otherwise desirable: bone scans are notoriously difficult to interpret if taken too soon after radiotherapy, because the activity associated with “remodelling” (ie regrowth) of the bones can light up the skeleton in the same way that secondary cancers do. However he wants to make sure there are no new bone secondaries. The soft tissue scan will check on changes to the secondaries in the liver and the lungs: this will be a more reliable indicator of Muktanand’s response to treatment than the bone scan. Naturally Muktanand has become quite focussed on the results of these scans.
Muktanand’s only source of continuing pain is her right leg, the one with a pin inserted into the femur. Her extensive yoga experience indicates she could relieve this pain with a strong (backward-bending) cobra pose, but she has decided to wait until after the bone scan. On 22 June she commenced leg massages with Margaret Hunt and has found this very helpful.
On 26 June Muktanand borrowed a book from Margie Barram called “Strong Women Stay Young” by Miriam E Nelson (1997 Lothian, Aurums Press). Muktanand likes to have variety in her exercise regime and this book provides a graduated series of weights-based exercises. Muktanand has found these quite helpful and alternates them with Pilates, yoga and walking. She gave up hydrotherapy at the end of June. She has regained all the weight she lost earlier in the year.
One of the side effects of her general tiredness is that Muktanand has been sleeping long and late, usually not rising much before 9 am. This is partly a winter effect but she has also been dreaming a lot and she has been very pleased to revive her old dream practice (writing out dreams when she wakes up). Her dreams are often populated with swamis as well as with groups of women, and the occasional ancestor.
On Friday 28 June she formally signed over the yoga centre to Darshan. That morning she had a long dream involving a fire ceremony in which all the work she had put into the yoga centre was offered into the flames. A palm reader in South India once told her she would be the founder of several yoga centres which she would then leave behind. Authentic Yoga & Meditation (previously the Brisbane Yoga Therapy Centre) was her third yoga centre. Although when she was first diagnosed Muktanand experienced a surge of relief at the thought of giving up the yoga centre, this dream was accompanied by a certain amount of grieving and sadness – but at the same time a positive sense of moving on.
In one of his weekly email circulars, Victor von der Heyde sent a copy of an article by Marc Barasch about his encounter with thyroid cancer. Muktanand was so impressed with this article she purchased a copy of his book “Healing Dreams” (Riverhead Books, Putnam 2000). She thought the dream book was very well written although the content was not particularly new to her. Barasch is the co-author of Remarkable Recovery, which has previously been honourably mentioned in these emails. [A copy of Barasch’s thyroid cancer article is available by email if you’re interested.]
In email #19 I described Muktanand’s criticism of the Sydney Morning Herald series “If I Had One Year to Live”. For the first time – that we are aware of – the series on 27 July featured a person with a genuine life-threatening illness: as it happens, a woman with metastatic breast cancer. Muktanand found the following extracts from this article resonated with her own experience:
“Sue Roebuck doesn’t look like a woman with cancer. She has rosy cheeks, a firm figure, and her hair is thick and curly. She doesn’t feel like a sick woman either. The only symptom of the cancer that is eating her bones in seven places is the occasional slight ache in her shoulder. … It is this very invisibility that Roebuck says makes the cancer so insidious.
The hardest thing to deal with now is the uncertainty of it all, the sense of not knowing how long she has left. … ‘It is a bit like a Catch-22 situation whereby, on one hand, one is trying to be optimistic and positive about the success of the treatment at keeping the cancer at bay, yet, on the other hand, there is also an element of anxiety and anguish about what the tumour markers will show.’ ”
Email #19 also described our initial investigations into oxygen therapy. Following this email we were referred to Liquide Air, a Brisbane company that supplies therapeutic oxygen. Their initial advice was that a “D” cylinder of oxygen would last for one month at the rate of 15 litres/min for three 20 minute sessions per day (as prescribed by Muktanand’s doctor). At $20 for the kit plus $23 for the cylinder, this was much more affordable than we previously understood, as well as being more affordable than their oxygen converter (concentrating oxygen from air) at $135 per month. Unfortunately when Muktanand commenced using oxygen on 4 July she rapidly discovered the cylinder would only last about one week at the rate of 5 litres/min and one session a day! Nevertheless she has decided to continue with it at this level up until her August scans.
On Wednesday 24 July 2002 Muktanand celebrated Guru Poornima and the 27nd anniversay of her initiation into sannyas by Swami Satyananda in Monghyr in 1975.
Muktanand’s diet has settled on Indian-style rice, dahl and curried vegetables in the evenings. Atmapuja and Chandrabindhu have been shopping for organic vegetables and fruit so she can enjoy raw beetroot, apple, carrot and ginger juice in the afternoons. Lunch and breakfast have proven more problematic because of the difficulty in finding good gluten-free bread, but for the past month or so Muktanand has reverted to Indian style kitcheree (rice & dahl) for breakfast, to boost her grain-protein intake. Plus she takes a multitude of powders and pills, centred on the Tallberg protocol.
Muktanand attended for her second hair cut with Precision Cuts on Thursday 25 July. Part of the special offer included some free streaks and the cut this time was much better styled as well as shorter. However, Friday was a classic bad hair day and she was quite irritated with it. She said she wished she had shaved her head earlier in the year when it looked like she might have to have chemotherapy (your hair normally falls out anyway).
Muktanand says she has a deep psychic connection with her hair. Even before she left Australia for India in 1974 she had determined to have her head shaved. Later when Swamiji ordered her to stop shaving her head she had recurrent dreams of tearing her hair out. In 1985 a traditional astrologer in Coimbatore told her she would always be “bald” and she would always look younger than her age. This astrologer also told her she would come very close to dying but she wouldn’t die. The astrologer’s credibility was enhanced by his correct prediction of the day on which “her time in India would end” – it was the same day on which she was later instructed by the New Delhi government to quit India (after the Sikh assassination of PM Indira Gandhi in November 1984 all non-Indian commonwealth residents were evicted).
Muktanand’s says the ashram (“Monghyr”, “Munger”, “BSY”) was very good at turning out obsessive-compulsive cleaners and people who loved to have short hair (long before short hair became fashionable in the West).
Muktanand sends her love as do I. We’ve managed to get out and see a couple more movies – Beneath Clouds (Australian) and Together (Swedish) – both strongly recommended.
John
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BOOK REFERENCES (not emailed):
Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam Wilber, by Ken Wilber, Shambala 1993.
“Sometimes Hearts Have to Break: 25 inspirational journeys to healing and peace”, by Petrea King.
LSD Psychotherapy 1980 by Stan Grof.
Beyond the Brain 1985 by Stan Grof.
The Journey by Brandon Bays.
Near Death by Craig Mitchell.
The Tibetan Book of Living & Dying by Sogyal Rinpoche.
Garuda Purana by Ernest Wood & Naunidhirama.
Songs of Strength (Sixteen West Australian Women Talk About Cancer, Healing & the Mind edited by Bill Moyers.
An Introduction to Parapsychology by Harvey Irwin.
Spirited Women: Journeys with Breast Cancer by Petrea King.
Still Here by Ram Dass.
How We Die by Sherwin Nuland (1994).
Cancer. A Nutritional/Biochemical Approach” by Henry Osiecki (2002 Bioconcepts Publishing).
Remarkable Recovery. What extraordinary healings tell us about getting well and staying well” by Caryle Hirshberg & Marc Ian Barasch (1995 Headline Book Publishing).
Healing Dreams” by Marc Barasch (Riverhead Books, Putnam 2000).
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Email #22, 14 August 2002
Dear Friends
Good news from the two scans conducted 12-13 August. As predicted from previous advice, the CT soft tissue scan provided the clearest information, whereas the radio-isotope bone scan was ambiguous. For the doctors on this email list, the full versions of these reports are at the end of this email.
Muktanand will not be able to see her oncologist until next week so we don’t have the benefit of his opinion. However, a plain English paraphrase of the CT report might go like this:
“The largest secondary cancer deposit in the liver has decreased by 17-29% [35mm in January report; 30 mm in April report]. The other multiple smaller liver deposits have also decreased in size. The largest lung secondary deposit has also decreased in size but more dramatically, by 40-57% [5mm in January report; 7mm in April report]. Most of the other multiple lung nodules have disappeared. There is no evidence of lung or heart disease. There is no evidence of spread of the cancer through the lymph system [which is the way most breast cancers spread]. The largish cancerous area in the roof of the left hip socket is starting to heal.”
Estimates of the size of lesions in CT scans is apparently something of an art. Given that CT scan films look more or less totally incomprehensible, this is not surprising.
A paraphrase of the bone scan might read:
“The radio-isotope signal in the breast bone, ribs, pelvis and top end of the right thigh bone is less dense than previously. There is no evidence of new cancer deposits. The disease has not progressed and the less intense signal indicates partial healing.”
It is worth noting the bone scan report was written with the benefit of having the CT scan report to hand. It is possible Dr Osborne might have been even less forthcoming (if that is possible) if he hadn’t been able to crib from the CT scan. When Muktanand looked at the bone scan film she couldn’t see any differences from the 16 January film.
Muktanand also got a verbal report from another bone scan radiologist (not Dr Osborne). He confirmed there was a real problem differentiating the effects of bone remodelling (bone regrowth) from cancer activity on bone scans after radiotherapy, because both generate isotope “signal change”. He said it normally took about 12 months for the signal change to settle down after radiotherapy. That is, after the cancer has been killed by radiation and assuming it has not recurred, bone regrowth would be expected to continue for about 12 months before settling down to normal. Normal bones don’t generate signal change.
Muktanand says for a while there she was hoping the tests would show it was all over. Now she says she will have to cultivate patience and just continue with what she has been doing.
All up it is very good news. It is also good to know that the liver function tests have been a reliable indicator of progress. Muktanand has ceased her oxygen therapy for the time being but will continue with everything else, including weekly acupuncture. She sends her most heartfelt thanks to everyone for material support, prayers, mantras, om chanting and kind thoughts. Her hair looks great.
Muktanand sends her love as do I.
John
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CT Scan of Chest, Abdomen & Pelvis, Monday 12 August 2002
(report by Dr John Fenwick, Qld X-Ray)
“The dominant liver lesion in segment 8 has decreased in size from 30 to 25mm in diameter. Multiple smaller liver nodules have also diminished in size. Significant further response of lung lesions to chemotherapy with the largest visible residual nodule just under 3mm in diameter. The majority of the upper zone lesions are not visualised on the current examination. There is no evidence of pleural or pericardial disease. No mediastinal, hilar or axillary lymphadenopathy detected. No para-aortic lymphadenopathy within the abdomen. There is no evidence of an adrenal mass.
Previous fixation of femoral shaft on the right. There has been partial healing of the lytic lesion within the roof of the left acetabulam with posterior cortical coverage of this lesion now demonstrated.”
CONCLUSION
“Significant further response of disease to therapy. CT resolution of a number of pulmonary nodules. Significant healing of left acetabular lesion.”
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Radio-Isotope Bone Scan, 13 August 2002
(report by Dr Dennis Osborne, Qld X-Ray)
“A multi-projection examination of the skeleton was obtained after the intravenous administration of Tc-labelled HDP and compared to a study on 16/1/02. The degree of uptake in the sternum, rib cage, bony pelvis and proximal shaft of the right femur is less prominent than on the previous examination. The findings suggest non-progressive metastatic disease with possible partial healing.”
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Email #23, 4 January 2003
Dear Friends
Muktanand had her fourth soft tissue CT scan on Thursday 19 December 2002. In the morning she had a very strange dream but woke up feeling ‘really happy for the first time in ages’. She had been waking with a ‘heavy heart’ for some weeks, starting about the date of the anniversary of her cancer diagnosis. However, the CT scan was a disappointment, showing that there’d been no improvement since August and containing a suggestion that the cancer could be returning.
The summary by the radiologist reads as follows – they always do these in capitals (the ‘right middle lobe’ refers to the lungs):
“PREVIOUSLY DEMONSTRATED SMALL NODULAR DENSITIES WITHIN THE RIGHT MIDDLE LOBE APPEAR UNCHANGED IN SIZE AND APPEARANCE COMPARED WITH THE PREVIOUS STUDY. THERE HOWEVER HAS BEEN AN INCREASE IN THE SIZE AND NUMBER OF HEPATIC METASTASES. SEVERAL LESIONS DOUBLING IN DIAMETER.”
13 AUGUST SCAN
I will come back to this but first I want to revisit the previous scan of 13 August. In the last email I described the radiologist’s findings but not the opinion of the oncologist Dr Mackintosh. Muktanand saw him on Thursday 22 August, when she was having her monthly Aredia infusion. Mackintosh thought the scan was a very good result, better than average. The healing had been quite quick in terms of the time frame. From his point of view the lungs were virtually clear. The liver was also a lot better but would probably take a while to show the same result as the lungs.
Dr Mackintosh said he wouldn’t change the treatment. The cancer was obviously very hormone sensitive and Muktanand should keep on ploughing on. He also thought the bone scan looked better but he agreed to wait for 6 months before performing the next scan. He didn’t think interference (caused by bone regrowth) was a problem. He was almost – but not quite – effusive.
Muktanand’s next Aredia appointment was on Thursday 19 September. On this occasion Dr Mackintosh took her through the scan on the light screens in his office. He repeated that the lungs were virtually clear and he said the single remaining spot was probably just a residue. He showed Muktanand how the spots in the liver were all surrounded by haloes of healing (lighter-coloured coronas with ragged edges). He was positively cheery. He said her tiredness was probably due to the Femara (hormone medication).
The day before her Aredia treatment on October 17, Muktanand discovered a very faint sign indicating her menstrual cycle might have returned. She thought this probably explained the tiredness that had dogged her for the previous 5-6 weeks. When she asked Mackintosh he confirmed this could happen with Femara, but was more common with Tamoxifen (the alternative hormone medication). He said if the signs continued it could indicate Endometrial Cancer and he would recommend a gynaecologist. He then quickly changed the subject to ask what Muktanand was doing for Christmas! [Like many Australians, Mackintosh takes a month-long Christmas break; unfortunately his locum is not as good as he is – she belongs to the ‘no-half-measures-lets-do-chemo’ school that oncologists are famous for.)
Muktanand’s November Aredia treatment was non-eventful except it was spread over 2.5 hrs instead of 1.5 hrs. During this session she overhead the patient next to her saying the longer the infusion time, the better the result therapeutically. For her first few Aredia treatments Muktanand had experienced a lot of side effects – headaches, fluid retention and muscle pain – especially in the first week after the treatment. But with the longer November infusion the effects were reduced. The nurses understand that longer infusions are desirable but are forced by patient numbers and facilities to minimise the time.
Muktanand’s 19 December Aredia infusion was extended to 3 hours and was done on the same day as her CT scan.
Liver function tests continued to be normal throughout this period. Haemoglobin was normal from August to October, when it became borderline-subnormal. The red blood cell count has fluctuated but has been generally subnormal. All the other indices have been normal.
Muktanand continues to have weekly acupuncture treatments with herbal mixtures alternating between tonics to address energy deficiencies and tonics to disperse the stagnation associated with the cancer (Jiang’s explanation is you’ve got to have enough energy for the dispersing herbs to work).
Since her breast lumpectomy in December 2001, some of Muktanand’s major ‘chronic fatigue’ symptoms have improved or disappeared. She no longer has to sleep in the afternoons, whereas before she had no choice. She no longer suffers from the wild blood sugar fluctuations that confounded her for many years. She is also able to sleep 10-12 hours a night, whereas before she would wake up at the least sound. She wakes up feeling rested.
Muktanand also feels the tiredness caused by her radiotherapy has largely gone although Petrea King says it can last for up to 2 years.
19 DECEMBER SCAN
Now we can return to the 19 December scan. Obviously Muktanand was very disappointed when she read the report (we peeked before seeing the doctor). But when Mackintosh reviewed the scan pictures he disagreed quite strongly with the radiologist’s opinion.
Mackintosh again confirmed the lungs looked clear. On this issue at least, the radiologist appeared to agree with him, stating the lung lesions “may represent post-infective scarring” (see report at the end of this email). Both Mackintosh and the radiologist also agreed there was no sign of any new secondaries outside the liver.
In relation to the liver, the radiologist found that “multiple hepatic metastases involving both lobes … have increased in size”. In his opinion the largest lesion in the right lobe had increased in diameter from 2cm to 4cm, and he saw a new 2cm lesion in the left lobe.
Mackintosh took us through the liver scans on the light screens. None of us could see a doubling in size of the largest lesion. The outer half of this lesion is a healing corona and it looked as if the radiologist had simply measured the diameter of the whole lesion. All of the other liver lesions still showed the healing coronas they had previously exhibited.
The one apparent anomaly was the new lesion in the left lobe. Because the December scan had taken more “slices” than the August scan, it was difficult to make a comparison. Mackintosh agreed the “new” lesion could simply be an artefact of the extra slices; that is, it was there in August but was not captured by the August scan. Alternatively, it was simply more obvious now. He said it was only one lesion and it would be unusual to get changes in the liver without change in the lungs – and the lung lesions looked like residuals.
A few days before the scan I had a dream in which I failed to prevent a snake from biting Muktanand on her right leg. Aside from preparing me for a less-than-positive result, the dream conveyed the idea of ‘striking back’. After a few days it seemed to transform into the idea “everything is perfect … as it is”.
Muktanand asked Mackintosh if he thought the cancer was striking back. Mackintosh conceded this was a possibility but said there wasn’t enough evidence to change the treatment. He didn’t think the liver was too bad – it was not so dramatic that you would get alarmed by it. None of the liver secondaries was large enough to cause any symptoms. You couldn’t say there was further improvement in the liver, but the result did indicate the next scan should be scheduled earlier, in 2 months instead of 3.
Mackintosh said the problem was that the cancer changes and develops resistance to the treatment. If it didn’t have this characteristic, cancer treatment would be simple! If the next scan showed cancer progression he would change the hormone treatment, but he wouldn’t be instituting chemotherapy. To institute chemotherapy now would risk making her sick without sufficient evidence.
Mackintosh said the cancer could just remain stable and stable lesions could be just as good as further shrinkage. He repeated that Muktanand shouldn’t get alarmed by the scan result, it was not enough to spoil her Christmas again, or anything like that. He was impressed that everything else about her clinical picture looked good (no pain; regular exercise program building muscles; stable weight; good appetite and good energy).
Despite Mackintosh’s reassurances Muktanand was very upset by the CT scan result and it took her several days to find some kind of balance and emotional perspective. She has been very, very tired – partly but not entirely due to the effects of the Aredia. She has been feeling either sick or unwell, and has spent most of the time since Boxing Day in bed or lying down. She has found her moods fluctuating sharply, so she has had to spend some hours every day dealing with really black feelings. She says her dreams have intensified and have in fact been very positive, but she has been going through a difficult time, probably some old emotional pattern that’s been triggered by the cancer.
OTHER STUFF – MDA
Over the last 3 months we have been watching a TV drama called MDA (Medical Defence Australia), about an organisation that defends negligence claims against doctors. In one episode a character says about a woman with breast cancer “its spread to her lymph nodes so she’s only got a few months to live”. A couple of other episodes dealt with a woman whose cancer had spread to her bones with “only got a few weeks to live”. These comments probably reflect community attitudes but they are not medically correct. Although some breast cancers can spread very rapidly, Muktanand’s medical history and breast cancer type suggest her cancer started spreading to her bones 4 or more years ago.
We managed to see the Buddhist movie “Samsara” – visually stunning with a very thoughtful storyline commenting on the original Buddha’s life
SPRING CLEAN
When she was laid up in the early part of the year Muktanand spent hours thinking about things to do around the garden and the house. In August she started doing a lot of gardening – she finds it less strenuous than cleaning so not quite as satisfying (Monghyr trained swamis are excellent cleaners). Together with “weights” exercises the gardening is a way of breaking up her “liver stagnation” (as it is described in Chinese traditional medicine), as well as being good for bone regrowth.
When she finished the gardening in mid-November, she moved on to the house. With the garden I pursue a policy of non-interference, but with the house I do occasionally insist on some input.
The spring cleaning started with a bang: one morning I went into the kitchen to find that instead of being stored in an attractive, albeit battered, plastic bag, my special bread had been relegated to a rice biscuit tin imported from Japan (thanks Jackie). My orange juicer had been shifted from the place it had been in for 10 years to the other side of the kitchen. The phone had been moved from the lounge room to the kitchen and upgraded to a high-tech portable job, and the expensive corner phone table in the lounge room had been converted into a platform for statuary. And this was just the start!
For Muktanand the spring cleaning of the house is about creating a nurturing and nourishing environment to provide a foundation for her to move on to other things (unknown at this stage). There is also the obvious symbology of cleaning up her internal environment. She has found it both satisfying and fun.
On August 14 Muktanand held a party for all her “yoga women” – long-term students and friends. This was a wonderful occasion for Muktanand as well as being an opportunity for her to thank people for their support. The positive feedback since her condition became public has been extremely helpful.
CANCER HAS ITS USES
Muktanand continues to suffer from Femara-driven hot flushes which are very uncomfortable in the summer weather. Consequently on 21 October we had air conditioning units installed in the house, one each in the lounge room and bedroom. After some disputation with Energex – the electricity utility – the bedroom unit was exchanged free of charge on 12 December: I had written them a long email but probably what clinched it was the reference to Muktanand’s illness: cancer has some uses after all! [Similarly, when the spindle on our vegetable juicer snapped and the shop assistant was equivocating about an immediate replacement, all resistance crumbled when Sakshi said: “this woman has cancer and she needs a juicer right away!”]
On 6 November I was attending a civil liberties meeting when Muktanand nearly choked on half of a large Formula-SE33 tablet. The broken edge was caught in her throat for about 15 minutes. Fortunately there was a yoga class downstairs but she got it out without their help. After this incident, she commenced crushing all her large tablets with a mortar and pestle!
Muktanand was convinced she was dying at the beginning of the year, partly because she had incorrectly applied the average survival statistics to her own personal situation. Now she ‘quite genuinely’ doesn’t feel she is going to die soon. She says if that means she is in denial then that is OK because research shows that people in denial live longer! She hopes the cancer doesn’t come back or creep up on her. She wants to live for years and years.
Muktanand sends her love as do I. We are going away for a few days.
John
PS: For those of you who don’t know, I retired from full time work in July 2000. Since then I have kept myself occupied as secretary and web site administrator for the Queensland Council of Civil Liberties (www.qccl.org.au), as well as getting the occasional letter on Iraq and other issues published in The Australian newspaper.
CT OF THE CHEST, ABDOMEN & PELVIS
CLINICAL HISTORY: Metastatic Breast Cancer. Progress.
REPORT: There are multiple hepatic metastases involving both lobes of the liver. These were previously demonstrated and have increased in size compared with the patient’s previous study. The largest lesion in the right lobe of the liver measures 4cm in diameter, previously measuring approximately 2cm. There are multiple smaller lesions in the right lobe and there is a new 2cm lesion in the left lobe anterior to the left branch of the portal vein.
The bile ducts, gall bladder, spleen, pancreas, both adrenal glands and both kidneys are normal. The appearances of the small and large bowel throughout the abdomen are normal and there is no adenopathy within the abdomen or pelvis.
There are scattered small pulmonary nodules, predominantly involving the right middle lobe, present on the patient’s previous study and unchanged. There are no new pulmonary lesions and there is no increase in size of the previously documented lesions and these may represent post infective scarring. There is no mediastinal or hilar adenopathy and there is no axillary or supraclavicular adenopathy.
SUMMARY: PREVIOUSLY DEMONSTRATED SMALL NODULAR DENSITIES WITHIN THE RIGHT MIDDLE LOBE APPEAR UNCHANGED IN SIZE AND APPEARANCE COMPARED WITH THE PREVIOUS STUDY. THERE HOWEVER HAS BEEN AN INCREASE IN THE SIZE AND NUMBER OF HEPATIC METASTASES. SEVERAL LESIONS DOUBLING IN DIAMETER.”
[Dr Robert Clarke, Queensland X-Ray]
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Email #24, 7 April 2003
Dear Friends
I would like to say this email was delayed because I was waiting for more results, but the truth is — as some of you know– I have become very involved in the Iraq war issue (writing letters to the editor, and circulating email articles). However, I have also used the delay to research and write a couple of reports. One is a summary of hormone therapies for breast cancer taken from the Net (appended); the other is a 3-page detailed analysis of all the liver CT scans. In relation to the latter I would like to mention that during my twenties I was a university researcher and lecturer in petrology — the study of rocks. Studying the tiny structures in the scans reminded me of studying the structures of rocks under the microscope (at least both are natural).
Unfortunately because of the delay this email is quite long. I promise faithfully that the next one will be shorter.
13 FEBRUARY SCAN
Muktanand had review bone and soft tissue scans performed on 13 February 2003. The bone scan looked much the same to us, but both the radiologist and the oncologist saw improvement. The most important feature for the oncologist was that there were no new bone tumours. The text of the radiologist’s bone scan report is reproduced at the end of this email, together with the CT scan/soft tissue report.
As you can see the radiologist’s CT scan report is mixed. The radiologist saw significant improvement in the lungs but a worsening situation in the liver, with the two largest secondaries increasing to 5×4 cm and 4cm in diameter respectively. On the positive side however, there were no signs of any new lesions in the other critical soft tissues.
If it were as simple as this Muktanand would probably have commenced chemotherapy by now. But fortunately that is not the case. Once again, in a repeat of the December results, the oncologist disagreed with the radiologist. There is definitely a “don’t know” factor here.
Just to complicate things further the oncologist also remarked that most if not all of the original very small liver lesions had disappeared in the February scan, leaving only the larger lesions.
The key word in the radiologist’s description of the February liver nodules is “hypodense”. These “nodules” are quite odd-looking compared to their mostly regular, rounded appearance in the January 2002 scan (pre-treatment). In cross section they have irregular lobate shapes, with a few tiny, apparently unattached fragments of the core material around the fringes. One is surrounded by a whitish corona; the other by a grey, grainy corona that becomes markedly asymmetrical at in the last picture. In three dimensions they must be quite complex.
The oncologist said later (during the 13 March appointment for the monthly bone treatment), he had only seen this type of pattern in “non-active” tumours, not in “enhancing” tumours (ie tumours that are growing). The same pattern was evidenced in the 19 December CT scan. The oncologist also thought the dark patches in the current nodules were darker than the pre-treatment nodules, which he said could indicate necrosis (dying cancer tissue). Muktanand’s General Practitioner (GP) has separately suggested that the dark patches could be pooling blood (associated with necrosis) and the oncologist agreed that could be a possibility.
Faced with the conflicting opinions, Muktanand decided to take an optimistic view. She has been supported in this by feedback from her dreams and feedback from reiki sessions.
AROMASIN
The oncologist said on 13 February that despite the radiologist’s report there was not enough evidence to start chemotherapy. However, as a precautionary measure he opted to change the anti-oestrogen medication from Femara to Aromasin: although both work by blocking the oestrogen-manufacturing enzyme aromatase, Aromasin has a different biochemical action (see note on hormone therapies at the end of this email).
Unfortunately the Aromasin turned out to be a bad choice, causing quite severe side-effects including gastro-intestinal disturbances, fluid retention and increased daytime tiredness. With the oncologist’s agreement, Muktanand ceased taking it on Tuesday 18 March, and the symptoms disappeared within 36 hours. When we saw Mackintosh again on Monday 24 March, Muktanand agreed to resume the Aromasin in order to check it was causing the symptoms: the symptoms returned as expected and on Thursday 27 March she re-commenced Femara.
SCAN REVIEW
I will spare you the three page analysis of the liver scans and try to summarise. There were two rounded large lesions in the first scan of January 2002, and these can be traced through the remaining scans. From January to August 2002 they show a marked decrease in size and develop a whitish corona, which the oncologist said indicated healing. In December 2002 they increase somewhat in size and become quite irregular; the larger one is still surrounded by a whitish corona, the smaller by a grey, grainy corona. In February 2003 they increase significantly both in size and irregularity.
Paralleling these changes in the two large lesions (there are only two), a large number of lesions in the January 2002 scan appear to completely disappear by the February 2003 scan. These also developed whitish coronas before they shrank below the scan horizon.
There is possibly a new structure in the February 2003 scan. However, interpretation is complicated by two factors. First, when the radiology department acquired a new CT machine late in 2002 they unilaterally increased the number of abdominal non-lung scan sections (or slices) from 84 in August to 99 in December. Second, the number of sections was again increased in February, to 118, at the request of the oncologist. Obviously these increases make interpretation difficult, because you can’t precisely compare the same sections.
The number of lung scan sections has remained relatively constant at 36-38. It is easy to see lots of tiny lesions in the January 2002 scan, but these disappear fairly quickly over the following scans. Texta-pen marks by the radiologist on the February scan indicates there are still a few suspicious lesions, but they are really very tiny. The oncologist has been saying for some months that the spotting on the lung scans may represent scarring.
In terms of interpretation, the radiologists, the oncologist (and me!) agree that the cancer lesions have effectively cleared from the lungs. There also seems to be complete agreement that there are no new lesions in the whole CT series, either in the liver, or elsewhere in the abdomen. And, according to the experts, there are no new bone lesions and the bone scans are consistent with a pattern of healing.
Interpretation differs on the liver. The radiologists and oncologist agree that the cancer lesions shrank between January and August 2002. After that the radiologists see growing “multiple” cancers and the oncologist sees ambiguity. The oncologist says it would be unusual though not impossible for the lungs to clear while the liver cancers grow. He also finds it significant that most if not all of the original smaller liver lesions have disappeared.
The oncologist will not criticise the radiologists but says his opinion has the advantage of the whole clinical picture. He means he is able to take into account Muktanand’s presentation and her reporting on her symptoms, whereas the radiologist is not. Given that Muktanand has not been experiencing any symptoms that can be attributed to cancer, the oncologist has concluded there is insufficient evidence to change her hormone treatment to chemotherapy.
If the next scan shows unequivocal evidence of liver cancer growth, the oncologist will almost certainly recommend chemotherapy. Muktanand is mentally prepared for that, but if the interpretation is still ambiguous, she may investigate one of the alternative therapy options.
The oncologist has agreed to ask the most experienced radiologist in the Qld X-Ray practice to review the whole series of scans when Muktanand has her next scan (April 10). He has said he will speak personally to the radiologist and also give him my 3-page analysis. Hopefully all this will result in a more thoughtful report than the ones that have been dashed off so far.
HEALTH MATTERS
Muktanand continues to have weekly acupuncture treatments supplemented by traditional Chinese herbal tonics. The tonic mixtures are variously blood building, liver cleansing and energy boosting. Recently a couple of friends who hadn’t seen Muktanand for a long time said her eyes are the brightest they’ve ever seen.
Muktanand had been taking Ginkgo Biloba for almost a year. When she stopped taking it for 3 weeks she started getting a lot of headaches. Resumption stopped the headaches very quickly.
The February radiologist reported that Muktanand’s lung secondaries had significantly decreased since December. Apart from the experiment with ceasing Ginkgo, the only changes in the therapeutic regime compared to the August-December period were a doubling of the Tallberg formula, and a cycling up and down of the Vitamin A, Vitamin D combination. Because there was no change in the lungs between August and December (as reported by the December radiologist), Muktanand wondered whether the Vitamin A might have been instrumental in the December-February lung improvement. As already noted, the assessment is clouded by the ambiguity of the liver pictures. However, Muktanand has been cycling her Vitamin A again in the interval between February and April, just in case.
Muktanand’s liver function tests (LFTs) have been normal since April 2002. The doctors have always indicated that normal LFTs are a positive sign, so when one of the numbers was abnormal on March 13, Muktanand became quite concerned. The index, the Gamma GT enzyme, is a non-specific indicator (a million things can set it off) and a repeat blood test four days later showed it had normalised. Of course to complicate things, another enzyme — AST — was abnormal in the repeat test! However, the key indicator of cancer liver destruction is the ALT enzyme and this continues to be normal.
Looking back, Muktanand says that after the August scans her energy became very externalised and she spent a lot of time being active in the garden and the house. The December scan came as a shock, despite the ambiguities, and her energy then became more internalised. She says that since December her orientation has been more about being ready to die than about simply getting physically better. She also says there is a sense in which the cancer has become her guru.
Day to day her energy now is better. Before Christmas one good energy day would be followed by 2-3 days when she should’ve been resting, but rather carried on with the help of willpower and chai: she is not doing that now. She is waking up earlier, even when she goes to bed late, and her energy through the day holds up better, although it still drops in the early afternoon. Having more energy improves her mood and she reports feeling better than she has for a long time. This pattern (of improved energy and mood) stopped developing while she was taking the Aromasin, but has reasserted itself now.
She is concerned about the next CT scan but is not so much worried as curious. The uncertainty is the main issue. Intuitively and emotionally she doesn’t feel the liver is getting out of control, but if the doctors tell her that is definitely what is happening, she’ll accept that. She thinks part of her improved energy might be recovery from the radiotherapy that she had about a year ago — this is also suggested by the normalisation of her haemoglobin levels in the last two months. The other part is that she is no longer working (and has no plans to return to work).
Muktanand says that overall she has been feeling a lot lighter: not necessarily more optimistic about recovery but no longer oppressed by a sense of dread. A kind of deepening acceptance of her situation. She feels more able to be in the present and there is an emotional sense that everything is basically OK, despite the difficulties. There are days when she has felt more intensely alive than she has for a long time.
OTHER STUFF
For recreation Muktanand reads a lot. I’ve probably mentioned this before but we have both thoroughly enjoyed the trilogy by Eliot Pattison, in which a Chinese detective is saved by Tibetan lamas after being thrown into the Chinese prison camp system (laogai) for political reasons. There are now three books, The Skull Mantra, Water Touching Stone and Bone Mountain. They are a wonderful combination of crime mystery, political expose and Buddhist teaching.
Recently Muktanand started reading the Dune series of novels. She had read the first before going to India but she says they haven’t aged. She says they are intensely philosophical and well written, as well as being page turners. She has often heard the quotation: “Life is not a problem to be solved, but a reality to be experienced”, but hadn’t realised it came from this series (Children of Dune, p.282).
Almost a year after seeing the first Lord of the Rings movie, we went to see the second, The Two Towers. Muktanand said it was a lot more enjoyable not being on crutches (and not being convinced she was going to die soon).
For those of you who have been following the saga of Muktanand’s hairdressers, I forgot to mention that in early October she changed from “Precision Cuts” to “Chop”. The package deal she got from Precision Cuts entitled me to a “free” men’s haircut, usually charged at $18. I gave it a try and it wasn’t bad for a 15-minute job, but since my Vietnamese hairdresser charges only $11 and trims my eyebrows as well, I have stuck with her. Especially when the last time she trimmed my eyebrows she said “you don’t want to look like (Prime Minister) John Howard, do you?” I said, “Absolutely not!”
Muktanand avoids the media coverage of the Iraq war as much as possible because she finds it very upsetting. However, we both managed to attend the huge Brisbane peace rally on February 15 – about 100,000 people, biggest ever in Brisbane. Didn’t stop the war of course, but then nothing ever was going to stop the crazy one in the White House.
Muktanand says thanks to everyone for your friendship and continuing support. She sends her love as do I.
John
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BONE & CT SCANS 13 FEBRUARY 2003
Clinical History: Progress metastatic Ca breast.
BONE SCAN
Tc-HDP whole body scan was carried out. The tracer uptake in the left temporal bone, sternum, rib cage, spine and pelvis are unchanged. There is an intramedullary nail in the right femur.
The intensity of the tracer uptake in the skeletal metastases appears to have decreased since the previous scan of 13/8/02 and this is probably in response to the therapy. No new foci of skeletal metastases have been demonstrated.
CT SCAN OF THORAX, ABDOMEN & PELVIS
THORAX: There are tiny nodules scattered in the lung fields. These have significantly decreased in size since the last examination of 10/12/02. There is no evidence of enlargement of the hila or mediastanal lymph nodes.
ABDOMEN & PELVIS: There are multiple hypodense nodules in the liver. These have increased in size since the last examination. The mass in the right lobe of liver now measures 5 x 4.0 cm and the left lobe mass measures 4cm in diameter. The spleen and pancreas appeared normal. The kidneys and adrenal glands showed no abnormality. There is no evidence of enlargement of the para-aortic or pelvic lymph nodes.
CONCLUSION: THE PULMONARY METASTASES APPEAR TO HAVE DECREASED IN SIZE SINCE THE LAST EXAMINATION OF 19/12/02. THERE ARE MULTIPLE LIVER METASTASES. THE RIGHT LOBE MASS NOW MEASURES 5 X 4CM AND THE LEFT LOBE MASS MEASURES 4CM IN DIAMETER. THESE HAVE INCREASED IN SIZE SINCE THE LAST EXAMINATION.
Dr Lakshman Jayasinghe
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MORE THAN YOU EVER WANTED TO KNOW ABOUT HORMONE TREATMENTS FOR METASTATIC BREAST CANCER
Many breast cancer tumours rely on the hormone oestrogen to grow. Such tumours are called oestrogen receptor positive. Receptors are very small parts of a tumour cell. If oestrogen is present, it will attach to an oestrogen receptor and may make the tumour grow larger.
Blocking the effect of oestrogen or lowering the amount of oestrogen in the body are two ways to treat breast cancer. This kind of treatment is called hormonal therapy. Hormonal therapy can block the body’s natural hormones from reaching cancer cells. Hormonal therapy is not chemotherapy: it is not cytoxic (cell-killing), which kills both cancer cells and other cells in the body.
Oestrogen can be blocked by anti-oestrogen drugs or lowered by aromatase inhibitor drugs. Anti-oestrogen drugs slow breast cancer growth by attaching to oestrogen receptors in breast cancer cells. This means oestrogen itself cannot attach. So even though oestrogen is present, its activity is blocked. Tamoxifen is an anti-oestrogen drug.
TAMOXIFEN
Tamoxifen is usually the first choice of hormone treatment for breast cancer. It is also used as adjuvant, or additional, therapy following surgical treatment for early stage breast cancer. As adjuvant therapy, Tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast.
While Tamoxifen acts against the effects of oestrogen in breast tissue, it acts like oestrogen in other tissue. This means that women who take Tamoxifen may derive many of the beneficial effects of menopausal oestrogen replacement therapy, such as lower blood cholesterol and slower bone loss (osteoporosis).
Many pre-menopausal breast cancer patients have their ovaries removed to eliminate oestrogen from their system. But treating these same patients who have tumours classified as oestrogen-receptor positive with Tamoxifen is an accepted alternative to ovarian removal. In most pre-menopausal women taking Tamoxifen, the ovaries continue to act normally and produce oestrogen in the same or slightly increased amounts.
In general, the side effects of Tamoxifen are similar to some of the symptoms of menopause. The most common side effects are hot flushes and vaginal discharge. Some women experience irregular menstrual periods, headaches, fatigue, nausea and/or vomiting, vaginal dryness, and skin rash. Tamoxifen can cause foetal harm and pregnancy should be avoided.
Tamoxifen increases the risk of two types of cancer that can develop in the uterus: Endometrial Cancer, which arises in the lining of the uterus, and Uterine Sarcoma, which arises in the muscular wall of the uterus. Like all cancers, Endometrial Cancer and Uterine Sarcoma are potentially life-threatening. Women who have had a hysterectomy (surgery to remove the uterus) and are taking Tamoxifen are not at increased risk for these cancers. Most of the endometrial cancers that have occurred in women taking Tamoxifen have been found in the early stages, and treatment has usually been effective.
Although Tamoxifen can cause liver cancer in particular strains of rats, it is not known to cause liver cancer in humans. It is clear, however, that Tamoxifen can sometimes cause other liver toxicities in patients, which can be severe or life threatening. Blood tests can check liver function.
AROMATASE INHIBITORS
In women who have passed the menopause the main source of oestrogen is through the conversion of androgens (sex hormones produced by the adrenal glands) into oestrogens. This is carried out by an enzyme called aromatase. This conversion process is known as aromatisation, and happens mainly in the fatty tissues of the body.
Aromatase inhibitors work by blocking this process and preventing this chemical change. This results in a reduction in the amount of oestrogen in the body. The three best known aromatase inhibitors are Femara (letrozole), Arimidex (anastrozole) and Aromasin (exemestane). Femara and Arimidex are non-steroidal inhibitors and have a very similar action. Aromasin is a steroidal inhibitor and has a different action from the other two, thus providing an alternative therapy if the others are not working.
The aromatase inhibitors are challenging Tamoxifen’s status as the treatment of choice for post-menopausal women with advanced breast cancer. They can also be effective in women who have stopped responding to Tamoxifen. They show promise as adjuvant therapy for early breast cancer, although it is still too early to say whether they are better than Tamoxifen.
Results of three large, international clinical trials published in 2001 showed that aromatase inhibitors delayed progression of breast cancer longer than Tamoxifen in women with advanced disease whose tumours were sensitive to hormones.
The common side effects seen with aromatase inhibitors are usually mild to moderate and are similar to the side effects produced by Tamoxifen. They can include hot flushes, nausea, decreased energy and weakness, headache, pain, back pain, bone pain, increased cough, shortness of breath and joint pain/stiffness. Depression, insomnia and anxiety have also been reported. Aromatase inhibitors have an adverse effect on fertility and are not to be taken by women who are pregnant or breast-feeding.
Patients taking aromatase inhibitors have experienced significantly fewer cases of endometrial cancer, vaginal bleeding, and blood clotting than those on Tamoxifen.
LIVER METASTASES – CT SCANS
MUKTANAND MEANNJIN
Analysis by John E Ransley
General Observations
1. There are two large lesions in the first CT scan of January 2002 and these can be traced through the remaining scans.
2. The two large lesions have a rounded appearance in the January scan changing to a more angular appearance in the April 2002 scan, one surrounded by a white corona and the other not.
• In the August 2002 scan the two lesions have a rounded appearance and are both surrounded by a whitish corona. They show a marked decrease in size compared to the April scan.
• In the December 2002 scan both lesions increase in size and irregularity. The larger one is still surrounded by a whitish irregular corona. The smaller one is surrounded by an irregular gray, grainy corona and in another section has outliers of thin symmetrically distributed annuli, similar in structure to annuli in the January 2002 picture of the other lesion (ie pre-treatment), but with a faded grainy appearance.
• In the February 2003 scan both lesions increase significantly in size but also in irregularity. The larger lesion has a much more irregular, lobate shape, still retaining a whitish corona. The smaller lesion loses most of its annuli, which reduce to small fragments. The smaller lesion is also surrounded by a roughly symmetrical grey, grainy area, which at one end becomes very asymmetrical as it merges or overlaps with another grainy area, possibly from another lesion.
3. There are multiple smaller lesions in the January scan which decrease in size in the April scan and are surrounded by white coronas. Most of these seem to have disappeared by the August scan but some are still evident in the December scan with white coronas. Most of the liver sections seem to look clear by the December-February scans,.
4. There appears to be a new lesion in the December scan also present (and more clearly defined) in the February scan.
Detailed Observations
The sections are taken at intervals of 7.5mm except where stated.
CT Scan 30 January 2002
The largest lesion is best shown in section 29. It is generally rounded with some angular edges, and is almost completely surrounded in this view by a thin dark broken annulus. Faded and reduced ends of the centre portion appear in adjacent sections 28 and 30. There is another much smaller irregular lesion in 26-27, and another small additional lesion in sn 28 with a very fine annulus. There are numerous very small scattered lesions particularly in sn 28.
The other large lesion appears in section 41. It has a rounded core surrounded by a grey annulus, with the outer circumference marked by a darker line. A much-faded replica of this structure appears in sn 42 and the other end can be seen as a small irregular lesion (without an annulus) in sn 40. There appear to be about another dozen very small lesions or spots in sn 41 which clear away by sn 47.
Section 40 also has a small lesion half surrounded by a detached crescent shaped annulus with a smaller concentric annulus in between. It sits in the “ > ” between two blood vessels. There are half a dozen spots nearby. Section 46 has a dot lesion.
CT Scan 24 April 2002
The large lesion is shown in sections 32 and 33 (only). It is roughly the same size as it was in the January scan, but the core is much more irregular particularly in sn 33. It is now surrounded by a white corona. Sections 30 and 31 have 3 small lesions surrounded by white coronas and in sn 32 there are about 7 very small lesions with white coronas. Sections 34-36 also show 3-6 spots with white coronas. [Radiologist note: “30”; sn 32]
The other large lesion appears in sections 41-42, largest in 42. It is about the same size as in January but much more irregular. There is no annulus or corona effect. There are 2 other spots (lesions) in sn 42 and about 10 spots in sn 41. Sections 43-48 are virtually clear with about one spot each. White coronas around these spots are only evident in sn 45, 47.
Section 40 has as a small bullseye structure apparently equivalent of the January sn 40 lesion. Sections 46-47 have a dot structure with a white corona.
CT Scan 12 August 2002
The large lesion appears in sn 31 and is markedly decreased in size. It is also much more regular with a rounded core surrounded by a white corona. Small portions (the ends) can be seen in the adjacent sections 30 and 32. There is another small lesion in 29 with a white corona. Practically all of the small lesions appear to have disappeared. [Radiologist note: “25”; sn 30]
The other large lesion is only seen in section 42. It has markedly decreased in size compared to April and has a rounded core surrounded by a regular whitish corona. There is another very small lesion in sn 42. Sections 40-41 have a very small lesion with a white corona and also sn 46. The rest in this area of the liver are clear.
CT Scan 19 December 2002
The large lesion is shown in sections 34-35-36, largest in 36. It has increased in both size and irregularity as compared to the August scan but still retains the whitish corona. There is another structure in sn 33 composed of two small crescent shaped lines (annuli) adjacent a small rounded lesion: this structure may b e new or may represent an evolving remnant.
The other large lesion is seen in sections 59-60-61. In section 61 it has increased in size compared to August but is much more irregular and is surrounded by a faded, grainy corona. In sn 59 it is only represented as a grey, grainy area. In sn 60 it appears as a very irregular lobate structure, smaller than in August, partially and asymmetrically surrounded by a thin, broken, grainy annulus. Sections 58-59 have another small, angular lesion, and the small bullseye lesion in sn 57 may be equivalent to the nodule in 40-41 of August.
Section 64 has a small bullseye structure with a crescent shaped edge in sn 63. This may be new. It could be an artefact of differently positioned CT sections but its presence in two adjacent sections does not support this.
CT Scan 13 February 2003
The large lesion is shown in sections 33-34-35-36, largest in 35. It has increased again in both size and irregularity with a more lobate structure and outlying fragments (as shown in cross-section), or lobes. The whitish corona persists in sections 33-35. In sn 33 the separate adjacent structure noted in the December sn 33 now has two thin crescent-shaped annuli centred on a small irregular core and is possibly larger, with a grainy, gray area around the core.
The other large lesion is seen in sections 64-65-66-67-68, with shading in 63 and 69 (these sections are 5mm apart instead of 7.5mm). It is larger and more irregular than in December, with a tendril-like extension from the core in sn 67 and another in sn 68: in three dimensions these probably have a planar structure. The core is surrounded by a roughly symmetrical grainy corona, which appears to become very asymmetrical in sn 65, although possibly this represents the grainy area centred on another lesion that is apparent in 64-63-62. There appears to be a third medium sized lesion in sn 64 (only), and sn 61 has a small lesion with a white corona. Apart from these structures, the rest of the liver sections on this sheet look clear, except as described below.
Section 71 has a small structure comprised of two central dots with symmetric half crescents (again, 5mm sections). Part of it is shown in sn 70 and it is also barely present in sn 69 and sn 72. It looks like a larger version of the ?new structure in December sections 63-64.
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Email #25, 13 April 2003
Dear Friends
This is the “short” email as promised. The review CT scan was performed on Thursday 10 April, the same day Muktanand had her monthly Aredia IV infusion (bone cancer treatment).
As a result of a combination of a face to face meeting between the oncologist and the rostered radiologist, and the stimulus prompted by my attempt at detailed analysis of previous scans, the radiologist’s new report is a much more carefully drafted and comprehensive document than previous reports. For the doctors on this list, the full report is reproduced at the end of this email.
The radiologist is certain there is progressive liver tumour disease, and this time the oncologist agrees the evidence is unequivocal. They also both agree that the lungs are clear of disease, and apparently have been clear since August 2002. As well, the CT scans showed a lot of regrowth activity (sclerosis) in the skeleton, without any sign of new tumours. Neither is there any sign of new tumours in the other abdominal organs.
What to do next. Oncologist Mackintosh had no hesitation in recommending single agent chemotherapy with Taxotere, commencing in about a month. He said this was the strongest, most effective chemotherapy drug currently available and it was specific for liver cancer. He also said that although it usually caused complete hair loss it caused less nausea than other chemotherapy drugs. [One of the reasons Dr Mackintosh has apparently been reluctant to prescribe chemotherapy is Muktanand’s extreme nausea during last year’s radiotherapy and morphine analgesia treatments.]
Dr Mackintosh had considerable difficulty accepting that Muktanand was genuinely unconcerned about losing her hair. Although Muktanand tried to explain that for many years in India she had shaved her head, he seemed unconvinced. Probably it has been banged into his head by his breast cancer patients that losing all your hair is an important issue for women!
Some notes I have compiled on Taxotere are appended at the end of this email. They include some general information and a more technical extract from a press release, taken off the Web. Infection is probably the biggest risk with chemotherapy, because the drug drastically reduces white blood cell counts. Jiang, Muktanand’s acupuncturist, has said she has herbs that will reduce the chemotherapy effects and help boost liver enzymes.
Confirming the CT picture of her liver, Muktanand’s regular blood test revealed that three of her liver enzymes were now abnormal, although only slightly so. For the doctors on this list, the results were AST 48 (normal range 5-40), Gamma GT 94 (5-65), and LD 273 (100-225).
Muktanand asked Dr Mackintosh whether a new treatment involving injection of radioactive isotopes to kill the liver cancer was an option, but he replied that it was usually reserved for patients who had liver cancer alone, and in any case carried its own toxic side-effects. He clearly thinks Taxotere is the best option. Obviously the isotope injection is also problematic where there are multiple lesions, including very small lesions.
When asked for an opinion, Dr Mackintosh thought about 20% of the liver was currently degraded by cancer, but this estimate was probably plus or minus 5-10% (the radiologist’s opinion would have been more authoritative). He assured us there was no threat to the bile ducts at this stage. He advised that if chemotherapy was delayed for too long, the liver would progressively become less able to cope.
All this was more or less as expected by Muktanand, although you couldn’t say it made her very happy. However, she got a real shock the next day during a consultation with her Alternative GP. The GP first asked whether Dr Mackintosh had nominated a percentage outcome. Muktanand replied he had said the goal was to shrink the tumours as much as possible and keep them shrunk as long as possible. The GP then said the specialist should have provided a treatment flow chart showing the percentage rates for success and failure – he was “legally” obliged to do that. The shock then came when the GP brought up some treatment rate diagrams for Taxotere on his desktop PC, which showed 48% median improvement in Phase II trials, with only 4% showing a complete response. He also found another study showing 54% improvement, and concluded in Muktanand’s case there was probably a 50-60% chance her tumours would respond.
The GP said Muktanand should ask the oncologist for more details about the anticipated response and how long it could be expected to last for. He noted one study which said that untreated subjects survived for 8.7 months versus patients treated with Taxotere who survived 11.5 months, ie the latter group gained only 3 months at the cost of the considerable ill-health caused by the treatment. He said he had had patients who complained that they wouldn’t have chosen the treatment if they’d known this. Muktanand commented she thought that was the worst-case scenario, whereas he was saying it was the average.
The GP said chemotherapy (he is not a great fan) basically provided a window, but she should ask her specialist how long. He said the Taxotere could be repeated if the cancers recurred, but it became less effective each time. And she could also be treated with other chemotherapy drugs (which are said to be less effective than Taxotere).
When I raised the statistics issue (as per Stephen Jay Gould) he acknowledged it was unlikely that the average would apply to Muktanand. The important thing was to assess where you were placed on the treatment response graph, and he thought Muktanand could be in the longer surviving part of the tail. He agreed her response to the hormone therapy had been better than average.
He wasn’t very positive, and Muktanand only controlled herself with difficulty. Although he is an excellent practitioner, this is not the first time he has managed to upset her. In December 2002 his comments about Muktanand’s high profile as a yoga teacher seemed to be an attempt to burden her with the responsibility of being an inspiration to her students. And in January 2002, at the very first appointment after her bone scan had revealed extensive metastatic disease, he told her she had been given the privilege of facing her death consciously – that is, he wrote her off!
Today we are going away for a holiday to the aptly named Sunshine Coast. We will be back after Easter. Muktanand already has a number of visitors coming but otherwise plans to effectively go into retreat, so as to reduce her exposure to sources of infection.
Muktanand sends her love as do I.
John
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Queensland X-Ray
Muktanand Meannjin. 10 April 2003.
CT CHEST, ABDOMEN & PELVIS
HISTORY: Metastatic breast cancer. Progress.
FINDINGS: Spiral 5mm scans were obtained through the chest, abdomen and pelvis following IV and oral contrast. The liver was examined with 5mm colimated in the arterial and portal venous phases. Comparison with the previous examinations, comprising 13/2/03, 19/12/02, 12/8/02, 24/4/02 and 30/1/02.
The multiple pulmonary nodules identified on the scans of January and April 2002 remain in remission. Some of these lesions have been replaced by small parenchymal scars which are unchanged. No pulmonary nodules are visible to suggest recurrent pulmonary metastases. There are no areas of consolidation or collapse and no pleural fluid is present.
There are no enlarged lymph nodes in the thorax, abdomen or pelvis.
Multiple liver lesions are present with characteristics consistent with metastases. The largest lesion is present in segment 8, extending into segment 7 and measures 45mm in diameter. When measured at the same level, this is increased slightly in size since the previous study when it measured 40mm. It contacts with another lesion in segment 8 and previous measurements may have included both lesions.
The second largest lesion lies in the left lobe, in segment 3 and measures 44mm. At the same level, it measured 28mm on the previous study.
The smaller lesions have also increased in size since the previous study and one or two new lesions are visible including a 9mm lesion adjacent to the gall bladder in segment 5. No liver lesions have decreased in size or vanished since the previous study. There is a small focal calcification superiorly in the left lobe.
There is no asciites. Multiple lytic and sclerotic bony lesions are visible. The spleen, pancreas, kidneys, adrenals and bowel appear unremarkable.
In comparison with the older studies in the series, there was initial positive response of the hepatic metastases, with a decrease in size and number. However, on the more recent studies, this improvement has not been sustained and there has been an increase in size and number of the liver lesions.
IMPRESSION: THE PULMONARY LESIONS REMAIN IN REMISSION. HOWEVER, THERE IS PROGRESSIVE HEPATIC DISEASE. MULTIPLE BONY LESIONS ARE AGAIN NOTED.
Dr Gregory Slater
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Taxotere (Docetaxel): General Information
Taxotere is prepared from the needles of European Yew trees. It is from the same family of Taxol.
Taxotere has been approved as a treatment for subjects who have locally advanced or metastatic (spreading) breast cancer, which has progressed during anthracycline-based therapy or has relapsed during anthracycline-based adjuvant therapy. Approximately two out of three breast cancer subjects treated with chemotherapy in the United States receive anthracyclines at some point in the treatment of their disease.
Anthracycline-based chemotherapy is commonly used by oncologists as initial therapy for metastatic disease and as adjuvant chemotherapy administered in conjunction with surgery to prevent disease recurrence. In subjects with advanced disease, their cancer will eventually become resistant and stop responding to the treatment.
Taxotere has shown positive results when compared with other anticancer drugs used in advanced cancer, such as doxorubicin or mitomycin C + vinblastine.
Compared with doxorubicin, Taxotere was more likely to cause tumour shrinkage (45% of people in a clinical study who were treated with Taxotere responded positively vs. 30% of people in the same study who took doxorubicin).
In a clinical comparison with mitomycin C + vinblastine, Taxotere demonstrated significantly higher overall positive responses and prolonged survival for those undergoing cancer treatment.
Like all anticancer agents, there are common side effects associated with Taxotere that may be bothersome or difficult. These may include low white blood cell count, hair loss, fatigue, fluid retention, numbness, mouth irritation, cutaneous changes, nausea and diarrhoea.
Taxotere was approved by the Food and Drug Administration (FDA) in 1996 to treat locally advanced breast cancer in patients who have not responded well to chemotherapy. In 1998, Taxotere was also approved by the FDA to treat breast cancer that has spread into other areas of the breast, or to other parts of the body, after treatment with standard chemotherapy.
June 1998 Press Release
FDA Approves Taxotere for Broadened use in Breast Cancer Treatment
“Taxotere is the first agent in the class of chemotherapeutics known as taxoids to be approved for the treatment of patients with locally advanced or metastatic breast cancer after failure of any prior chemotherapy. Taxotere was previously limited to the treatment of patients resistant to anthracycline-based therapy.
Taxotere is the first anticancer agent to show a superior response rate to doxorubicin, a widely-used chemotherapy in the first-line treatment of metastatic breast cancer. It is also the first single agent to demonstrate increased survival among patients with advanced breast cancer when compared to combination chemotherapy.
The FDA decision was based on the clinical results of two large pivotal multicentre Phase III studies involving patients with advanced breast cancer whose disease either relapsed or progressed after treatment with an anthracycline or with an alkylating agent containing regimen.
One randomised Phase III multicentre trial compared Taxotere as a single agent to mitomycin C in combination with vinblastine in patients with metastatic breast cancer that failed an anthracycline containing regimen. The one-year survival rate among breast cancer patients treated with Taxotere was 49 percent, compared to 33 percent for those treated with mitomycin C and vinblastine. Therefore, 50 percent more patients treated with Taxotere were alive one year after therapy, compared to those treated with the combination. The overall response rate among patients treated with Taxotere was 28 percent compared to 9.5 percent among the mitomycin C plus vinblastine patients.
The second randomised Phase III study presented was a multicentre trial comparing Taxotere to doxorubicin in patients with metastatic breast cancer whose disease failed an alkylating agent containing regimen. Patients treated with Taxotere showed a 50 percent higher overall response rate compared to patients treated with doxorubicin (45 percent for Taxotere vs. 30 percent for doxorubicin). Among patients with liver metastases, the Taxotere response rate was significantly higher than doxorubicin (54 percent vs. 27 percent). Median survival was 14.7 months for the Taxotere treatment group compared to 14.3 months for the doxorubicin treatment group.
In patients with normal liver function, Taxotere side effects include neutropenia, thrombocytopenia, anaemia, fluid retention, hypersensitivity, nausea and diarrhoea. A three-day premedication regimen with corticosteroids is recommended in order to prevent or reduce hypersensitivity and fluid retention.
Taxotere’s mechanism of action inhibits cancer cell growth, which depends on the formation of an internal cellular skeleton made up of elements called microtubules. During the cell development cycle, microtubules first assemble and then disassemble, permitting cancer cells to divide and thus allow tumour growth. Taxotere essentially freezes the cancer cell’s internal skeleton by promoting the assembly and blocking the disassembly of microtubules. This action prohibits cancer cell division, which causes cell death.”
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Email #26, 28 August 2003
Dear Friends
Muktanand commenced chemotherapy with Taxotere on Thursday 5 June and had her fourth treatment on Thursday 7 August. Her monthly Aredia treatment (for her bones) has been juggled so that it is always a week apart from the 3-weekly chemotherapy treatment. Both treatments involve the intravenous infusion of considerable amounts of fluid and Muktanand has sought to minimise fluid retention by keeping them apart. So sometimes the Aredia treatments are spaced 5 weeks apart instead of 4: according to the oncologist, this is not a problem.
Both treatments are accompanied by corticosteroid medication to minimise fluid retention and reduce hypersensitivity. This is generally working well, except that a peculiar side-effect of dexamethasone is fluid retention in the lower part of the face, resulting in a so-called “moon-faced” effect. It goes away when the treatment stops but for the duration Muktanand has a slightly moonish face and an almost bald head. When her cheeks get red from hot flushes – an effect exaggerated by the Taxotere – she looks like a rosy-cheeked yogic nun – quite cute.
Muktanand has responded very well to the chemotherapy, as you can see from the two accompanying radiology reports below. In brief, the multiple liver secondaries that were present at the beginning of the chemotherapy have been reduced by approximately half. Muktanand’s Alternative GP has agreed this is an excellent result and commented that his nutritional program would have undoubtedly contributed.
She has also been fortunate with the side-effects. Although her experiences last year had led her to expect the worst, the effects have been much less than they could have been, initially at least “like a very bad flu”. Some of the likely reasons for this are Muktanand’s thorough preparation, her strict adherence to the chapter on managing chemotherapy in Petrea King’s book Spirited Women, her weekly acupuncture treatments supplemented with Chinese herbal tonics, and her between-chemotherapy injections supplied by her Alternative GP (Vitamin C 7.5 gm, Mg, Ca, Zn, Vitamin B & Selenium).
The main side effect for the first three treatments was severe general weakness, especially for the first week after treatment. Nausea was minimal although there were transitory episodes. A major hassle was the requirement for thorough mouth washes every few hours. Following the first treatment Muktanand overdid the slippery elm but she soon adjusted this to the right level.
On the basis of the rise and fall of the white blood cell count, oncologist Dr Mackintosh professed himself satisfied the Taxotere dose was set at the maximum safe level. Thankfully Muktanand has not caught any infections, which is the biggest risk when her white blood cell count is depressed. Although some doctors argue that combining Taxotere with another chemotherapy drug at shorter intervals is a more effective protocol, the oncologist dismissed this as a high-risk approach. [When I referred to the report of a combination Taxotere trial that I had taken off the Net, he commented that it was unusual if at least one of the patients in these trials didn’t die!]
A new side effect manifested after the fourth treatment, heralded for the oncologist by a dip in Muktanand’s haemoglobin level below the 100-unit level (normal range is 115-165). Mackintosh was obviously expecting the symptoms that Muktanand now reported: severe general weakness, dizziness, headaches and shortness of breath. He explained this was due to the cumulative effects of the Taxotere on her bone marrow, which in turn had reduced the production of red blood cells and therefore the blood’s capacity to transport oxygen. He said that this was usually managed with a blood transfusion and that in any case Muktanand was going to need a blood transfusion sooner or later. But first her blood type had to be “cross-matched”, a critical process which needs to be performed very carefully: in the UK last year 20 people died and dozens more required intensive care as a result of blood transfusion errors. Muktanand had her first “top-up” blood transfusion (2 bags of about 350ml) on Thursday 21 August, after the new symptoms had persisted for 2 weeks. There were no transfusion allergies and by the following Saturday night she had started to feel more “normal”.
ADVENTURES
There were a few little adventures leading up to the start of chemotherapy.
After the 10 April CAT scan showed “an increase in size and number” of secondary liver cancers, Mackintosh said it was “reasonable” to postpone chemotherapy for a month or two, but no longer. He said the risk could be assessed by monitoring the Liver Function Test (LFT), ie the critical liver enzyme levels in her blood (“serum”). Basically, as the cancer progressed these enzymes became elevated. It was important not to let the liver deteriorate too far, ie beyond the point where it could cope with the chemo.
We had understood from our GP that the cancer marker enzyme was ALT, but Mackintosh said ALT was “less” affected, GGT “often”, and ALP “sometimes”. In the event ALT (Alinine Aminotransferase, aka SGPT) was the only normal enzyme just prior to the commencement of Muktanand’s chemotherapy on 4 June. ALP (Alkaline Phosphatase) had just started to become abnormal, whilst the three enzymes that were really freaking out were AST (Aspartate Aminotransferase, aka SGOT), Gamma GT (Gamma Glutamyltranspeptidase) and LDH (Lactic Dehydrogenase). These abnormalities only kick in at a certain level: for most of last year Muktanand’s liver enzymes were normal, despite the presence of significant liver tumours.
According to Mackintosh, LDH was an indicator of “cell activity” or cell turnover, and thus an indicator of liver cancer cell activity (cancer cells divide faster than most normal cells). But he said it also reflected the increased production of white blood cells in the recovery period following each chemotherapy treatment. He did not therefore expect the LDH to normalise until the chemotherapy was finished. For the doctors who receive this email Muktanand’s 4 June liver enzymes were ALP 116 (normal range 30-115), AST 59 (5-40), ALT 34 (5-40), GGT 170 (5-65), and LDH 370 (100-225). On 20 August all were normal except AST at 42 (ie virtually normal), GGT at 88 and LDH at 244.
On 10 April Mackintosh said the aim of the chemo was to shrink the liver tumours and keep them shrunk. He said that Taxotere usually produced a maximum response over 6 treatments, and he confirmed that if the cancer recurred Muktanand could be treated with different drugs. He also reiterated his opinion that despite the gross asymmetry in the pattern of her cancer spread – major bone secondaries, moderate liver secondaries and minor lung secondaries – it had probably all happened simultaneously (instead of one organ after another). And he said that although the chemotherapy was a systemic or total body treatment, he wanted her to continue with her oestrogen-blocker and Aredia drugs, which had proven their effectiveness in treating her lung and bone cancers. On a later occasion he added that Taxotere response rates were about 70 percent, with complete responses (ie cancer all gone) about 10-20 percent. The median recurrence-free period was about 18 months but the statistics showed a wide scatter. The reason the liver cancers had made a comeback was most likely because the original cancers had included some cells that were not oestrogen-dependant.
On 11 April her Alternative GP advised her to continue taking all her anti-cancer nutritional supplements, after checking that none of these would produce adverse reactions with her chemotherapy.
On April 19 Muktanand decided in principle to go with the chemo, despite her expectation that the side-effects would be as bad as her nightmarish experiences in the first half of last year. It seemed like the only alternative was to let the little beggars keep gobbling up her liver until she died (or discovered some as yet unknown treatment): i.e. it looked like a no-brainer. However, she did want to postpone it as long as possible in order to ensure she’d done everything possible to make herself comfortable during the experience. For example getting her head shaved and visiting the dentist and buying supplies of mouthwash and so on. And, at Sakshi’s insistence, buying a gorgeous new beannie with matching scarf.
On 24 April we attended a hospital video presentation on chemotherapy, which starred an looking incredibly youthful-looking Dr Mackintosh. The theme of the video – conveyed mainly by a handful of ex-patients – was that chemotherapy worked and it wouldn’t be as bad as you expected.
ALTERNATIVE THERAPY
The Sunshine Coast holiday, however, had reminded us that a friend’s mother had successfully treated secondary liver cancers with an alternative therapy using a camphor laurel tea, so Muktanand decided she might as well give this a try. Muktanand also had a dream encouraging her to do shankaprakshalana – yogic washing of the digestive system – and she decided to substitute this for the enemas in the camphor laurel therapy protocol.
The camphor laurel therapy apparently originated in Japan but there is a practitioner who lives on the Sunshine Coast. It is based on the theory that cancer is caused by a parasite, a theory that is not so bizarre given recent research on the role of the EBV and HHMMTV viruses in breast cancers. Anyway, the logic seems to be that because camphor laurel trees are so poisonous for insects (which is why birds avoid them), a tea made from their leaves should also be poisonous for the cancer parasite. The Sunshine Coast practitioner has reportedly had some success with his treatment.
Muktanand commenced the camphor laurel (C/L) therapy on 22 April and added Lagu Shankaprakshalana (LSP) on 24 April. These were performed first thing in the morning and involved drinking a lot of fluid – 1.5 litres of saline water and then 2 litres of C/L tea. Basically it was a full time practice, and Muktanand gave up her weights-based muscle and bone building program around this time.
The therapy seemed to work, although whether it was the LSP, the C/L or both that was responsible is impossible to tell. Given that it’s advocates say the C/L program usually takes a few months, it seems likely that the LSP was responsible for the effect. Anyway, a blood test on 8 May showed her liver enzymes had remained at the same level as 10 April, after trending steadily upwards since December. On seeing this result, Mackintosh said it was OK to delay chemo for another 2 weeks. Muktanand says the LSP was initially very energising and brought about a positive shift in her attitude to her illness.
Unfortunately the effect didn’t last. In yoga therapy there is an LSP protocol for diabetes that says you cease the practice after 3 weeks. Muktanand felt very good during the first two weeks, not so good in the third, and debilitated by the fourth, when she gave it up. However, she says that despite feeling weak and horrible at the end of the fourth week, a lot of stiffness had gone out of her body and she felt really relaxed.
A blood test on 23 May showed her liver enzymes had once again resumed their upward trend. Mackintosh said the increase in the LDH enzyme in particular indicated more cell turnover which in turn meant it was likely the tumours were expanding. He recommended she start chemo in 2 weeks, subject to the results of a new CT scan and blood test. Muktanand now decided to commence the chemo in early June. On 26 May Jiang – Muktanand’s acupuncturist – reported she could feel the liver cancers as hard lumps.
KRISHNASWAMI
Earlier this year we had invited Krishnaswami – an Indian yoga friend from Coimbatore – to stay with us during the International Rotary Convention in Brisbane at the beginning of June. For a while it looked as if he would be here during her chemotherapy but as it turned out he came and went just before it started. Krish spent most of his time at the convention – he is a old Rotary wallah – but fortunately he was able to spend some time socialising with us.
The story of how Krish met Muktanand is interesting. He said he had gone to Madras to watch a cricket test match but when the match finished a day early he decided to visit his sister in Bangalore. While he was at his sister’s house he discovered there was a Rotary meeting close by so he went along to socialise as he was President of the “Coimbatore West Rotary Club No. 3200”. Krish said he remembers the occasion very well: the meeting took place on the 18th of January 1979, Muktanand was the guest speaker and she spoke on the topic “The Unfoldment of Genius”. Krish said he was very impressed with her talk and made sure he met her afterwards and from there he invited her to give talks and yoga classes in his home town (at that time she was teaching at an ashram she had founded in Bangalore). Eventually he persuaded Muktanand to set up a yoga ashram in Coimbatore, but this was closed down after she was forced to return to Australia in 1985.
ILLNESS FOCUS
Living with Muktanand’s illness has tended to narrow my focus such that I forget that other people have life-trauma-death issues too. This was dramatically brought home to me by the death in May of a former work colleague, Matthew Reynolds, who was only 38 when he died suddenly of a massive brain aneurysm. He had just been re-elected as national president of the CPSU and left behind a wife and two young children. I didn’t know Matthew that well, but I know he would have been seriously annoyed at having his life cut off so abruptly. It reminded me of an occasion last year when I was waiting for the pedestrian lights to change in West End. There was a preacher behind me who was absolutely crowing how he had no worries about dying because he was “resting in the arms of Jesus”. All of the rest of us, he told us at the top of his voice, foolishly thought that we would live until we were 70 or 80, when in fact “we could be dead tomorrow”.
There is a Monty Python sketch where John Cleese plays the Grim Reaper. As best as I can recall it starts with him coming out of the dark and knocking on the door of a brightly lit cottage with his scythe. When he is admitted there is this raging dinner party happening and everyone is obviously having a great time. Cleese stands at the door in his apparently faceless GR costume and says in a spooky voice “it’s time, everybody out”, and they all start protesting and saying there must be a mistake and who do you think you are and we can’t leave the kids and what about the unfinished PhD and so on. Then the Cleese character gets really angry and says “I am the grim reaper, you must come with me ” and he swishes the scythe around a few times and points to the dinner table and says “the salmon mousse”. They all stop talking and stare in horror at the remains of the salmon mousse dish. The piece ends with their bodies folding across the table and their ghostly images following JC out the door and – Ingmar Bergman style – in profile along the horizon into the night.
PUJA
In early June a Tasmanian yoga friend offered to arrange a traditional Indian puja for Muktanand’s healing. Kusum, an Indian woman pujari, had been staying in Hobart with her daughter and had already conducted a couple of pujas for this friend (who has recently had cancer). As it turned out the puja was conducted on Saturday the 21st of June, at the time of the Winter Solstice – 5.15pm. The ceremony involved Kusum doing a special puja for Muktanand (using a photo for focus) followed by group chanting of the Mahamrityunjya mantra 108 times. My eldest sister Judy attended with her husband Roger. Here is Hari’s description of the ceremony:
“The puja last night was beautiful and felt very powerful. It took 2 hours to complete. Even Kusum Devi commented on the energy and power she felt. As preparation for the puja she had done other practices and mantras over the previous couple of days, which included making yantras in coloured powder on a metal plate. The puja was actually a compilation of rituals dedicated to all the Gods, to Ganesha and of course to Shiva as Lord Mahamrityunjaya.
15 of your past students and some of our current teachers whom you have never met, participated, which involved worshipping a Shiva Lingam, making offerings of rice, sesame, white flowers and a yoghurt, ghee and mild mixture. Judy and Roger came and though it was quite different to anything they’d experienced before, were very appreciative and enjoyed talking with Kusum Devi afterwards. After the puja we distributed prasad (carrot halwa) and shared a light supper. Many commented on how well and clear you looked in the photo. A number of others who were not able to make it due to other commitments, said they would participate by chanting Mahamrityunjaya at 5.00 pm.
Atmadhyanam will be collecting and sieving the ash and we’ll send that up to you when its ready. Kusum Devi asked me to pass on to you her heartfelt thanks for the offering and wished you the healing blessings of the Gods.
We hope you were able to feel the effects of all the prayers at some level, whether consciously or not, and I know all your many friends continue to support your journey of healing however that unfolds itself. Hang in there, keeping trusting the process and know that God’s grace is with you. Much love and Oms, Hari & Atmadhyanam”.
In Brisbane a small group of yoga friends conducted a fire ceremony and chanted the Mahamrityunjya mantra at Sakshi’s place at the same time as the Tasmanian puja. Muktanand’s first chemo session was on 5 June but her liver enzymes showed their biggest improvement between 16 June and 26 June.
WIND UP
I know this email is a bit too long and detailed for most of you but the exercise is very helpful for me in clarifying the issues. Of course Muktanand doesn’t need to write it out because she carries the information all in her head – in logical file order!
Muktanand has her fifth chemotherapy treatment today. She is not looking forward to the side effects. Mackintosh has already indicated that if the liver cancers keep responding he would like her to have an extra 3 treatments, that is a total of 9 treatments. A review CT scan is planned 3 weeks after the sixth treatment.
Muktanand sends her love, as do I. Did I say that she is generally feeling well in herself and her spirits are good? She thanks everyone for their support, both material and ethereal.
John
PS: Books Muktanand has found interesting or helpful are Beyond Prediction: The Tarot and Your Spirituality by John Drane, Ross Clifford & Philip Johnson; and The Power of Now by Ekhart Tolle. She has also greatly enjoyed the novel The Life of Pi by Yann Martel, which she got for her birthday, and the latest Harry Potter.
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Queensland X-Ray
Muktanand Meannjin. 4 June 2003.
CT THORAX, ABDOMEN & PELVIS
HISTORY: Progressive evaluation for metastatic carcinoma of the breast.
TECHNIQUE: Axial sections through the thorax, abdomen and pelvis with oral and intravenous contrast. Comparison is made with the previous study of 10.4.03.
FINDINGS: There is no mediastinal or hilar lymphadenopathy. The lungs and pleural spaces remain clear with no evidence of recurrence of the pulmonary metastatic disease. Multiple metastases are once again noted throughout the liver and there has been enlargement of these deposits indicating progressive disease. The spleen, pancreas and both kidneys are normal. There is no retroperitoneal or mesenteric lymphadenopathy. The uterus is large with a bulbous extension superiorly, unchanged since previously and likely to represent a uterine fibroid. There is no pelvic lymphadenopathy. The inguinal regions are clear.
COMMENT: Progressive hepatic metastases. No evidence of recurrence of the pulmonary metastases and no new soft tissue metastases elsewhere.
ADDENDUM – MEASUREMENT OF HEPATIC METASTASES
The two large metastases in the right lobe of the liver (segments 7 and 8) each now measure approximately 5cm in maximum diameter for a combined total maximum diameter of 10cm as compared to previously 8.5.
In segments 3 and 4, the lesion which previously measured 4.4cm now measures 5cm. There is a 1.5cm new deposit in segment 4B which was not evident previously. There are three further deposits in segment 4B measuring up to 2cm in diameter, only one of which was evident previously measuring 5mm.
Dr Denis Gribbin
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Queensland X-Ray
Muktanand Meannjin. 7 August 2003.
CT OF THE CHEST & LIVER
CLINICAL HISTORY: Metastatic breast carcinoma with liver metastases.
TECHNIQUE: Axial 7.5mm slices were acquired through the chest and upper abdomen and compared with the patient’s previous CT of 4/06/2003.
FINDINGS: There has been an impressive response to chemotherapy with a significant reduction in the size of all previously documented liver metastases. The largest metastasis which formed a confluent mass within the liver measuring 9.5cm in maximum transverse diameter now measures approximately 5.5cm in size. All liver metastases have shown a similar reduction in size. There are no new hepatic lesions.
There is no adenopathy in the upper abdomen. The bile ducts, gallbladder, spleen pancreas and both kidneys are normal.
There are no pulmonary metastases. There is no mediastinal or hilar adenopathy.
SUMMARY: THERE HAS BEEN A SIGNIFICANT RESPONSE TO CHEMOTHERAPY WITH A MARKED REDUCTION IN THE SIZE OF PREVIOUSLY DOCUMENTED HEPATIC METASTASES. NO NEW LESIONS ARE IDENTIFIED.
Dr Robert Clarke
_________________________________________________________
POSTSCRIPT (not emailed)
Sometime after sending the above email I found the script of the Life of Brian on the Net. Here is an edited version of the relevant extract.
START: Picture of Grim Reaper
SCARY MUSIC: [dong] [clunk clunk] [clunk clunk]. Grim Reaper knocks on door of cottage. Dinner party inside.
GEOFFREY: Yes? Is it about the hedge? Look. I am awfully sorry, but —
GRIM REAPER: I am the Grim Reaper.
GEOFFREY: Who?
GRIM REAPER: The Grim Reaper.
GEOFFREY: Yes, I see.
GRIM REAPER: I am death.
GEOFFREY: Yes, well, the thing is, we’ve got some people from America for dinner tonight, and —
ANGELA: Who is it, darling?
GEOFFREY: It’s a ‘Mr Death’ or something. He’s come about the reaping? I don’t think we need any at the moment.
ANGELA: Hello. Well, don’t leave him hanging around outside, darling. Ask him in.
GEOFFREY: Darling, I don’t think it’s quite the moment.
ANGELA: Do come in. Come along in. Come and have a drink. Do. Come on.
GUESTS: [mumble, mumble]
ANGELA: It’s one of the little men from the village. Uh, do come in. Please. This is Howard Katzenberg from Philadelphia … and his wife, Debbie, …
HOWARD KATZENBERG & DEBBIE: Hi; Hello there.
ANGELA: …and these are the Portland-Smythes, Jeremy and Fiona.
FIONA PORTLAND-SMYTHE: Good evening.
ANGELA: This is Mr. Death. [spooky music] Well, do get Mr. Death a drink, darling.
GEOFFREY: Uh, yes.
ANGELA: Mr Death is a reaper.
GRIM REAPER: The Grim Reaper.
ANGELA: Hardly surprising, in this weather. Ha ha ha.
EVERYONE: [laughing]
HOWARD: So, you still, uh, reap around here, do you, Mr Death?
GRIM REAPER: I am the Grim Reaper.
GEOFFREY: That’s about all he says. There’s your drink, Mr Death. Do sit down.
DEBBIE: We were just talking about some of the awful problems facing the third world — [gasp] [crash][GR smashes glass on floor]
ANGELA: Ohh. Would you prefer white? I — I’m afraid we don’t have any beer.
JEREMY PORTLAND-SMYTHE: The Stilton’s awfully good.
GRIM REAPER: I am not of this world. [spooky music]. I am death.
DEBBIE: Well, isn’t that extraordinary? We were just talking about death only five minutes ago.
ANGELA: Yes, we were. You know, whether death is really the end.
DEBBIE: As my husband, uh, Howard, here, feels, or whether there is — and one so hates to use words like ‘soul’ or ‘spirit’, but —
JEREMY: But what other words can one use?
GEOFFREY: E– exactly.
GRIM REAPER: You do not understand.
DEBBIE: Ah, no. Obviously not.
HOWARD: Let me just tell you something, Mr Death.
GRIM REAPER: You do not —
HOWARD: Just one moment. I’d like to express, on behalf of everybody here, what a … really unique experience this is.
JEREMY: Hear, hear.
ANGELA: Yes, we’re so delighted, uh, that you dropped in, Mr. Death.
HOWARD: Can I just finish, please?
DEBBIE: Mr Death, is there an after-life?
HOWARD: Dear, if you could just wait, please, a moment, —
ANGELA: Are you sure you wouldn’t like some sherry?
HOWARD: Angela. Angela, I’d like to just say this at this time, if I could, please. Really.
GRIM REAPER: Be quiet!
HOWARD: Can I just say this at this time, please?
GRIM REAPER: Silence! I have come for you.
ANGELA: You mean … to —
GRIM REAPER: Take you away. That is my purpose. I am death.
GEOFFREY: Well, that’s cast rather a gloom over the evening, hasn’t it?
HOWARD: I don’t see it that way, Geoff. [sniff] Let me tell you what I think we’re dealing with here: a potentially positive learning experience to get an —
GRIM REAPER: Shut up! Shut up, you American. You always talk, you Americans. You talk and you talk and say ‘let me tell you something’ and ‘I just wanna say this’. Well, you’re dead now, so shut up!
HOWARD: Dead?
GRIM REAPER: Dead.
ANGELA: All of us?
GRIM REAPER: All of you.
GEOFFREY: Now, look here. You barge in here, quite uninvited, break glasses, and then announce, quite casually, that we’re all dead. Well, I would remind you that you are a guest in this house, and — [whock] [GR swishes scythe around] Ah! Oh.
GRIM REAPER: Be quiet! Englishmen, you’re all so bloody pompous, and none of you have got any balls.
DEBBIE: Can I ask you a question?
GRIM REAPER: What?
DEBBIE: How can we all have died at the same time? [silence]
GRIM REAPER: The salmon mousse.
GEOFFREY: Darling, you didn’t use canned salmon, did you?
ANGELA: I’m most dreadfully embarrassed.
GRIM REAPER: Now the time has come. Follow. Follow me. [clunk] [bang bang bang bang bang]
GEOFFREY: Just… testing. Sorry.
GRIM REAPER: Follow me. Now. [deathly music] Come. [eerie music]
ANGELA: Well, the fishmonger promised me he’d have some fresh salmon, and he’s normally so reliable.
GUESTS: [mumbling]
DEBBIE: Hey, I didn’t even eat the mousse.
GUESTS: [mumbling]
ANGELA: Honestly, darling, I’m so embarrassed. It really is embarrassing. I mean,…
HOWARD: I suppose… [mumbling]
ANGELA: …to serve salmon with botulism at a dinner party is social death for me.
GEOFFREY: Well, all right.
GUESTS: [mumbling] [spooky music]
_________________________________________________________
Kali Story (not emailed)
Hindu Goddessess by David Kinsley. Motilal Banarsidass 1987 (p118)
Kali’s most famous appearances in battle contexts are found in the Devi-Mahatmya. In the third episode, which features Durga’s defeat of Sumbha and Nisumbha and their allies, Kali appears twice. Early in the battle the demons Canda and Munda approach Durga with readied weapons. Seeing them prepared to attack her, Durga becomes angry, her face becoming dark as ink. Suddenly the goddess Kali springs from her forehead. She is black, wears a garland of human heads and a tiger skin, and wields a skull-topped staff. She is gaunt, with sunken eyes, gaping mouth, and lolling tongue. She roars loudly and leaps into the battle, where she tears demons apart with her hands and crushes them in her jaws. She grasps the two demon generals and in one furious blow decapitates them both with her sword (7.3-22).
Later in the battle Kali is summoned by Durga to help defeat the demon Raktabija. This demon has the ability to reproduce himself instantly whenever a drop of his blood falls to the ground. Having wounded Raktabija with a variety of weapons, Durga and her assistants, a fierce band of goddesses called the Matrkas, find they have worsened their situation. As Raktabija bleeds more and more profusely from his wounds, the battlefield increasingly becomes filled with Raktabija duplicates. Kali defeats the demon by sucking the blood from his body and throwing the countless duplicate Raktabijas into her gaping mouth (8.49-61).
In these two episodes Kali appears to represent Durga’s personified wrath, her embodied fury. Kali plays a similar role in her association with Parvati. In general, Parvati is a benign goddess, but from time to time she exhibits fierce aspects. When this occurs, Kali is sometimes described as being brought into being. In the Lingana-purana Siva asks Parvati to destroy the demon Daruka, who has been given the boon that he can only be killed by a female. Parvati then enters Siva’s body and transforms herself from the poison that is stored in Siva’s throat. She reappears as Kali, ferocious in appearance, and with the help of flesh-eating pisacas (spirits) attacks and defeats Daruka and his hosts. Kali, however, becomes so intoxicated by the blood lust of battle that she threatens to destroy the entire world in her fury. The world is saved when Siva intervenes and calms her (1.106).
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Email #27, 10 October 2003
Dear Friends
This time the news is dire. The first line chemotherapy with Taxotere has stopped working and the liver cancers are making a comeback. The radiologist’s report is appended below and this time, after a little bit of ticking and tacking, oncologist Mackintosh was in agreement. [The radiologists have always been right before, even though their reports have often left a lot to be desired.] Mackintosh took us through the CT scan images in his office.
Mackintosh said the chemotherapy drug had to be changed. When Muktanand commented it looked like a last resort, he reluctantly conceded it was “a difficult situation”. He said the cancer was “behaving somewhat aggressively and resiliently, at least in the liver”. He was a bit defensive about Taxotere, pointing out it had worked very well initially.
The Taxotere treatment scheduled for Thursday (9 October) was cancelled. Mac suggested Muktanand use this appointment for her monthly bone treatment – Aredia – but she postponed this in order to have a week free of treatment.
Dr Mackintosh has made a 16 October appointment for her to commence treatment with a second line anthracycline drug called Epirubicin. He said the mean response rate – the likelihood of the liver tumours responding – was about 50% (Taxotere was 70%). The protocol would be weekly treatments and the effectiveness should be apparent within 2-3 weeks, via liver function tests (LFTs). He considered changing her anti-oestrogen treatment from Femara to Tamoxifen, but decided in the end there would be no advantage.
Mackintosh said the best that might be achievable was to stabilise or even shrink the cancers, as long as the treatment kept working. It was obviously unlikely that they would go away completely. The lungs were still clear and this was a bit unusual, but it was “not amazing”. It was possible the Femara had prevented recurrence in the lungs. The bones still looked good, and Muktanand has not experienced any bone pain.
Muktanand has been sick for the whole of this last chemotherapy cycle. She has been missing meals and starting to lose weight. Her critical liver enzymes have been trending upwards since August. Mackintosh said the symptoms could be due to the cumulative effects of the chemotherapy, or the cancer, or both. He said the cancer was not threatening the bile ducts.
Muktanand has arranged to see a counsellor specialising in death and dying issues.
She sends her love, as do I.
John
__________________________________
Queensland X-Ray
8th October 2003
Muktanand Meannjin
CT OF THE CHEST, ABDOMEN & PELVIS
Clinical History: Metastatic breast cancer. Progress on chemotherapy.
Report: 5mm axial slices were acquired through the thorax and upper abdomen in arterial phase with 7.5mm slices through the abdomen and pelvis in the portal venous phase.
Comparison is made with the patient’s previous CT of 7/8/2003.
There are multiple hepatic metastases all of which have increased in size compared to previous studies. There are several new metastatic deposits, projected in the right lobe of the liver.
There are no pulmonary metastases. There is no pleural disease.
The bile ducts, gall bladder, spleen, stomach, pancreas, both adrenal glands, both kidneys, ureters, urinary bladder and appearance of the small and large bowel in the upper abdomen are normal.
There is no significant axillary, mediastinal or hilar adenopathy.
SUMMARY: MULTIPLE HEPATIC METASTASES, MANY OF WHICH HAVE SHOWN A SLIGHT INCREASE IN SIZE COMPARED TO THE PREVIOUS STUDY AND THERE ARE SEVERAL NEW LESIONS WITHIN THE RIGHT LOBE.
Dr Robert Clarke
ADDENDUM TO REPORT
The images were re-reviewed as requested by Dr Mackintosh.
There are numerous new hepatic lesions in the right lobe. These are largely clustered at the dome of the right lobe of the liver producing small ill-defined punctated areas of enhancement throughout the parenchyma.
Pre existing lesions have also increased in size. As a simple example of the increase, there are two lesions abutting the middle hepatic vein in axial image 85. These measure 13mm in diameter in today’s examination having previously measured 7mm in size. The larger tumour deposits which show central necrosis* appear more infiltrative with a wider area of enhancement extending diffusely into the surrounding parenchyma.
SUMMARY:
As previously described, there has been an increase in the size and number of hepatic lesions and these largely involve the right lobe of the liver. Specific targeted lesions have shown approximately a 80-100% increase in lesion size from 7mm to 13mm while the largest lesions with central necrosis show a more infiltrative pattern of parenchymal involvement.
Dr Robert Clarke
* necrotic tissue is dead tissue
_________________________________________________________
Email #28, 30 October 2003
Dear Friends
THURSDAY 16 OCTOBER
After the CT scan result of 8 October, Muktanand took a week off treatment to take stock of her situation. During this week she started to notice gradually increasing stomach pain and distension, accompanied by mild nausea. When the oncologist examined this, he said it was probably caused by the liver pushing into the stomach and said “this means we really must do something”. Muktanand had already decided to take on another course of chemotherapy, so she had no argument.
Muktanand commenced treatment with her second chemotherapy drug, Epirubicin, on Thursday 16 October. Epirubicin is one of the “red” anthracycline antibiotic groups of chemotherapy drugs. The oncologist, Dr John Mackintosh, says the anthracyclines and the taxans are the two most effective groups of chemotherapy drugs.
Muktanand’s previous drug, Taxotere, is one of the Taxan group, derived from the bark and needles of the European yew tree, Taxus brevifolia. Taxotere inhibits cancer cell growth by damaging the microtubules – vital structures involved in cell division – essentially freezing the cancer cell’s internal skeleton. Although the precise mechanism is unknown, Epirubicin and the other anthracyclines stop cancer cells from dividing by deforming the cell’s DNA structure and scrambling the subsequent synthesis of DNA and RNA. Although the two drugs preferentially target cancer cells because they are the fastest growing – and therefore fastest dividing – cells in the body, the action of the two drugs is thus very different. Mackintosh started Muktanand on Taxotere because research showed it was usually more effective with liver cancers.
THURSDAY 23 OCTOBER
Muktanand had her second Epirubicin treatment on 23 October, together with an Aredia infusion (for bone remodelling). The combination of some prior cannabis with the pre-med dexamethasone (to reduce fluid retention) got her really ripped and for a couple of hours she giggled and smiled a lot as she chatted to the nurses.
She related her symptoms to Dr Mackintosh. Most of the time she suffered from constant nausea and stomach pain, although they eased at night and she normally slept well. During the day she could do little except lie around on her bed. She managed the pain with panadol and the nausea with cannabis and Zofran – a prescribed anti-nausea drug. Her stomach had swollen some more and felt quite hard; it almost looked as if she was pregnant! Her appetite was poor but she still managed to eat daytime snacks and a reasonable meal at night. Getting all her pills down – even in powdered form – was a chore. She had stopped taking SAME after realizing it was contributing to her nausea. On 21 October she commenced taking some Cansema Tonic III but the Australian supplier has since run out of stock.
She had not suffered any drastic loss in weight and looked surprisingly well. She complained about her lack of clarity, and her tiredness and weakness, which are all apparently symptoms caused by Epirubicin. Epirubicin is also damaging to the veins so she tried to maintain her fluid intake in order to keep the veins open and ready to receive weekly injections.
Mackintosh said her nausea was consistent with her upset liver function, as illustrated by her anomalous liver function enzymes (see below). The Epirubicin was also contributing significantly to the nausea, or could even be the main cause. He advised her to stop taking her anti-oestrogen drug, Femara, and to cut back on Vitamins A and C because they put a load on the liver. He said he had a “hunch” the Femara was not making any difference.
Muktanand asked if she could change over from weekly treatments to 3-weekly treatments, which was an option Mackintosh had offered at the beginning. Muktanand’s thinking was that at least 3-weekly treatments would give her some good days at the end of each cycle, in the same way that the Taxotere did. Mackintosh replied her liver function was now so disturbed that the higher 3-weekly dose would make her very sick, as well as threatening the recovery of her white blood cell count, which depended on liver function. He added that weekly treatments were also a bit more effective than 3-weekly treatments.
We asked about radiotherapy to the liver, and if it was possible to do one lobe and then the other, so one lobe would always be working. Dr Mackintosh said it could be done and it was possible to restrict it to certain sites. However it did damage normal liver cells. He said it was an option to keep in the background, but it couldn’t be done while Muktanand was taking the Epirubicin. He said we just had to push on with the Epirubicin.
At the end of this consultation I asked Mackintosh whether he would be willing to approve the importation of Laetrile, if the Epirubicin failed. I said Muktanand’s GP had recommended it but said it required specialist approval.
Dr Mackintosh got really angry. He said to me “Look at me! Look at me! John! That Laetrile stuff is just quackery and, as the PM would say, flummery!” At least he would have said this if he’d been a fan of Kath & Kim, a wildly popular Australian TV comedy that Muktanand likes to watch. Anyway he made it very clear there was no way he would give his approval. He also took the opportunity to cast aspersions on the GP to the effect that said GP was trying to flick responsibility to him for prescribing a suspect substance. He said there were several other agents he would prescribe before Laetrile, and they were backed by scientific research. When I responded that Muktanand’s GP always had research to back up his recommendations Mac gave a hollow laugh. My additional comment that the GP was perhaps too cutting edge only provoked him further. We got the message and Muktanand endeavoured to calm him down so that the personal relationship she’s been trying to cultivate with him – to get better doctoring – wasn’t damaged. .
SUNDAY 26 OCTOBER
We phoned Dr Macintosh’s after hours number after becoming a bit alarmed about the increasing swelling and pain in Muktanand’s abdomen. He examined her at the hospital and repeated his diagnosis that it was most likely due to swelling in her liver. However, he said another CT scan was warranted to exclude the presence of fluid. The scan confirmed his diagnosis and found no fluid – if fluid had been present it would’ve had to be drained. The radiologist’s report on the scan is reproduced below. Dr Mackintosh expressed surprise at the rapidity of the spread of the liver tumours, but was again pleased to note the lungs were clear. He offered Muktanand a stronger painkiller but she said she was managing OK with panadol.
We raised the issue of radiotherapy again – last year’s radiotherapy to Muktanand’s extensive bone cancers had apparently been pretty successful. Mackintosh said it could be done for pain relief – by shrinking the tumours – but she would have to stop the chemotherapy for a few weeks. He said chemotherapy was sometimes done in conjunction with radiotherapy, but not for the liver. He reiterated we just had to push on with Epirubicin.
MONDAY 27 OCTOBER
Dr Mackintosh took us through the CT films and showed us how the swollen liver was pressing up against the other organs in the abdomen. The left lobe, which lies next to the stomach, was particularly swollen.
I ran a theory past Dr Mackintosh. The theory had been prompted by a conversation between Muktanand and a nurse on the day of her first Epirubicin. Muktanand had said to the nurse “if this doesn’t work it’ll be curtains”. The nurse replied “we don’t talk like that in here: if a drug doesn’t work we just try another one, and then another and so on”. A fellow patient told Muktanand she’d had so many chemotherapy treatments over the last 13 years that she couldn’t remember the number.
I asked Mackintosh if it was true that the chemotherapy drugs worked by targeting the fastest growing cells in the body. He said yes, essentially. I said it seemed to me then that the chemotherapy process was basically exerting a Darwinian survival-of-the-fittest pressure on the cancer cells (or organism), forcing them to divide faster and faster to escape the effects of the chemo drug. The end result was a faster reproducing or more “aggressive” cancer.
Mackintosh said this might be partly true, but I think he was just being polite. He said rather that the cancer “develops resistance”, which is what he has said a number of times. When I pressed him for more explanation he said it was all to do with the DNA. I asked him if there were any chemotherapy drugs that worked by targeting biochemical mechanisms instead of cell division – he said they all worked by targeting cell division.
He concluded this part of the conversation by saying we would just have to press on. We would only know if the Epirubicin was working after 4-6 treatments. He was happy to arrange an appointment with the radiation oncologist to discuss radiotherapy.
THURSDAY 30 OCTOBER
Muktanand had her third Epirubicin treatment on 30 October. Mackintosh said her left sided pains were due the swollen liver pressing against her left side. He had hoped that her liver enzymes would be starting to respond but the blood test showed no sign of this (see below). He considered prescribing another hormone drug (eg Tamoxifen) but decided against it as it appeared certain the liver cancers were not hormone dependent.
We had a consultation with Dr John Ramsay, radiation oncologist. He said that the liver could be irradiated but it was a procedure that was only applied occasionally, usually to treat local pain. He said when the whole liver was irradiated the dosage had to be kept low to avoid permanent damage to normal liver cells, but this meant the dosage was usually too low to have a strong effect on the cancers. However, some people showed a good response. He confirmed that it was possible to irradiate one lobe of the liver at a time, leaving the other lobe to carry on normal functions. When this was done it was OK to use a high dose of radiation because the normal liver cells would eventually regenerate. However, the procedure would potentially generate a lot of nausea and there was no guarantee it would work. It was up to Muktanand and he certainly wouldn’t be pressing her to do it. Ramsay said her normal bilirubin result meant there was no liver failure and her liver was still delivering normal functions, despite the anomalous enzymes. The liver had a lot of spare capacity.
Early last year Muktanand found it very hard to cope with radiotherapy because of the associated nausea. Later she discovered there was a strong psychic component to the nausea, dating from pre-natal experiences. This psychic component has been largely if not wholly resolved, and she is now able to contemplate radiation nausea with a lot more equanimity.
FINALLY
Muktanand says the illness is a wonderful training for keeping your attention focussed in the present. She admits that her liver condition is pretty scary. The “objective” information – from CT scans, blood tests and clinical examination by the doctors – reveal a pretty grim picture.
Despite all this Muktanand remains in good spirits generally. Partly this is due to her natural tendency (and mine) to believe in survival – while there’s life there’s hope! Partly because there are no signs of cancer anywhere else in the body, so if the liver can be managed things will turn out alright. And partly because the “metaphorical” information – from dreams, readings, feelings and so on – has always been positive.
In fact one of the most remarkable features of Muktanand’s illness has been the recurrence of strong positive dreams just before or after news that the cancer is gaining the upper hand. The consistent message of these dreams has been that after considerable pain and suffering Muktanand will graduate into joy, light and love. There is a very strong hint that she will live but if she doesn’t, she will settle for the rest.
About 10 years ago Carol, our next-door neighbour, had reached the 40th week of a 52 week schedule of chemotherapy for a Non-Hodgkins sarcoma. She looked like she was on death’s door, just skin and bone. She collapsed at the hospital while she was waiting for her chemotherapy to start. When she came to, she discovered her specialist weeping at the foot of the hospital bed saying “I’m sorry I can’t cure you.” Carol says she remembers quite clearly her thought: “What’re you talking about? I’m not going anywhere!” Carol is still kicking along although she sustained some radiation damage to her throat and saliva glands.
Muktanand wants you to know how much she appreciates all your messages of concern and support. She sends her love as do I.
John
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Blood Tests 23 October & 30 October, 2003
Routine Chemistry including electrolytes: Normal.
Haematology: Normal except for slightly low readings for Haemoglobin, Haemocrit, RCC and Lymphocytes.
Liver Function Enzymes 23 October: ALP 211 (normal range 30-115); AST 143 (5-40); ALT 79 (5-40); Gamma GT 369 (5-65); LDH 669 (100-225).
Liver Function Enzymes 30 October: ALP 352; AST 211; ALT 98; Gamma GT 705; LDH 922.
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Queensland X-Ray
Sunday, 26 October 2003
CT CHEST, ABDOMEN & PELVIS
HISTORY:
Metastatic breast carcinoma. Increasing abdominal distension.
FINDINGS:
There are innumerable metastases within the liver. On those where direct comparison is possible, there is evidence of doubling of lesion diameter and there is accompanying increase in liver volume particularly involving the left liver with changes in abdominal wall contour. No ascites is demonstrated. An enhancing lesion within the pelvis anteriorly almost certainly reflects a uterine fibroid. No metastatic disease is detected within the lungs or pleura. The kidneys, pancreas and spleen are normal in appearance.
IMPRESSION:
MULTIPLE LIVER METASTASES WITH DOUBLING OF DIAMETER SINCE THE PREVIOUS EXAMINATION THREE WEEKS AGO. SIGNIFICANT INCREASE IN LIVER BULK ACCOUNTING FOR ABDOMINAL SWELLING.
Dr John Fenwick
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Email #29, 10 November 2003
Dear Friends
This is a crucial week for Muktanand because it is the week in which the doctor decides whether the chemotherapy is working.
Muktanand asks if you will “just hold the possibility that she will get better”.
You can do this in any way that you can or that you feel comfortable with. Prayers, mantras, chanting, wishing, positive thinking, sending light, sending energy or holding a vision of Muktanand in love are some of the ways in which you might do this.
Muktanand sends her love as I do.
John
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MUKTANAND’S CONDITION
Her abdomen is very distended because of her swollen liver, in turn due to the spread of “innumerable” little tumours. Last Thursday 6 November all her liver enzymes except for ALT were substantially higher, with Gamma GT and LDH now exceeding 1000 units. Her bilirubin was still normal but had started to rise. Her white blood cell count was also abnormal at 2.9: however if it continues to drop at the rate it has been dropping, it will be too low this Thursday for her to continue chemotherapy. She is controlling her nausea with cannabis and Zofran but is unable to eat during the day, only managing small snacks at night. When she is “not feeling too terrible” she is still hopeful that she will survive. The specialist has said that the Epirubicin chemotherapy needs to be tried for at least 4 weeks to determine whether it’s working.
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Email #30, 18 November 2003
Dear Friends
On Thursday 13 November Muktanand attended the Mater haematology/oncology clinic hoping for some good news. Unfortunately, the blood tests showed her liver enzymes had continued to climb, with GGT and LDH enzymes now at 2020 and 1484 units respectively. Her coagulated bilirubin was borderline anomalous for the first time ever, indicating incipient liver failure. However, her red blood values were all normal and at 2.8 units her white blood cell count was almost the same as the week before, reflecting the two bags of blood she was transfused on that occasion.
Specialist Mackintosh said she had three options: (1) she could continue with the Epirubicin; (2) she could take a week’s break and then continue with the Epirubicin; or (3) she could take a week’s break and start another chemotherapy drug, Navelbine. He explained that Navelbine was a member of the third class of chemotherapy drugs, the other two being the taxans and the anthracylines, which she had already tried. We understood that he was going down a list of diminishing effectiveness.
Mackintosh said Muktanand’s blood counts indicated she could stand another dose of chemotherapy, but she was obviously very sick and he understood she may not want to. Initially he inclined towards option (1), even though he conceded that the cancer was progressing. He said he would have hoped by now for some sign that it was working. He said another dose would prove conclusively one way or the other whether it was working.
To us it was quite conclusive that the Epirubicin wasn’t working. The chemotherapy was also making Muktanand so sick that she could hardly eat and dehydration was becoming an issue.
Mackintosh agreed she should take a week’s break to think about what to do next. He arranged for Muktanand to be given two bags of saline solution intravenously to ensure she was hydrated. For the first time ever he raised quality of life as an issue, and offered Muktanand a consultation with a palliative care specialist, an offer which she declined. He agreed to ask the radiation oncologist, John Ramsay, to talk to her about radiotherapy to the liver. In the meantime he suggested Muktanand start on a low dose of daily dexamethasone (2mg).
We talked to Ramsay on Thursday and Friday. He confirmed that he could certainly arrange to irradiate the liver. The radiation would target the whole of the liver because Muktanand’s tiny tumours were spread throughout. The usual protocol involved an initial burst of low dose radiation accompanied by a high dose of dexamethasone (8-12mg) to reduce the oedema around the little tumours. If the response was positive – that is, if the tumours shrunk – then this could be followed up with a consolidating dose of radiation about two weeks later. He said that because the radiation dose would be very carefully calibrated to avoid damaging her normal liver cells, the chances of it working were not very good – he thought about 30%. He also said that just because the radiotherapy had been successful with her bone cancers didn’t mean it would also be successful with her liver cancers: that word “adapt” came up again.
Muktanand asked Ramsay if he would do it were he in her position and he said he would. On Friday Muktanand decided to proceed with this option and cease all further chemotherapy. In the meantime she would try and build up her strength. Ramsay thought he could schedule the radiotherapy in the week beginning 24 November. Muktanand will see Mackintosh this Thursday again. Both specialists emphasised they were not pushing Muktanand towards any particular treatment option.
In the days since Friday Muktanand has significantly improved. She has been able to eat soups and vegemite broth (an old Australian favourite) and quaff bland drinks without too much trouble. A special treat has been some Japanese rice crackers sent from a dear friend in Japan. However, she still gets severe cramps if she tries to eat too much, and her abdominal swelling has not reduced.
Muktanand is very, very touched to know that she is the focus of so many people’s love and concern. Her mother and sister are visiting for a couple of days this week, and on Sunday she is looking forward to a short visit from an old Indian friend. However, her capacity to see visitors is very limited.
She sends her love as I do.
John
NOTE ABOUT PAIN MANAGEMENT
This note is included because it might be helpful to someone you know. Muktanand’s distended abdomen causes her discomfort and she has to manoeuvre around it as if she was pregnant, eg by putting a pillow between her knees when she’s lying on her side. However the associated pain is managed quite adequately with household panadeine (equivalent to Aspro).
Most of her pain is episodic and arises from severe lower abdominal cramps with associated nausea, apparently the delayed result of her attempts to eat more substantial food. Her specialist has prescribed Zofran/Zydis 8mg, a new and very expensive anti-nausea drug that is the best that Allopathic medicine has to offer. But it is not enough in Muktanand’s case, and so she has been complementing it with cannabis. Neither is sufficient by itself, but the effect of the cannabis is quite remarkable: one minute cramps and nausea; five minutes later all gone, after one joint.
Allopathic medicine has tried to extract the active anti-nausea ingredient from cannabis but so far their pills are not anything like as effective as the smoked cannabis. Of course the older naturopathic medical traditions would say this is not at all surprising, consistent with their argument that the complexity of a herbal preparation is always more effective than the simplicity of a simple “active” ingredient .
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Email #31, 30 November 2003
Dear Friends
Muktanand has largely recovered from her last bout of chemotherapy. She is able to maintain her fluid intake without any discomfort, thus avoiding hospital trips to be rehydrated intravenously. She is now eating several small meals a day, including delightful soups and pancakes provided by a yoga friend who is a wonderful cook. This weekend she even managed delicious minestrone soup made by another wonderful yoga cook (yoga must be a good training for cooks!). Pills – especially vitamin pills – have been too difficult to ingest but she has started taking these again in soluble form.
Her red and white blood cell counts have recovered to normal levels, dispensing with the need for blood transfusions. However, her liver enzymes have continued to climb and her abdomen is even more distended, if that is possible. She has to lie down most of the time because her abdomen makes standing and sitting very uncomfortable. She takes oxygen a couple of times a day because her swollen liver presses on her diaphragm, restricting her breathing.
She continues to experience daily nausea, cramps and “uneasiness”, but these are well managed with her anti-nausea agents, Zofran and cannabis. In taking her cannabis she has graduated from baby boomer joints to a generation X bong, which allows more precise calibration of doses. Her acupuncturist also makes up a herbal tonic that eases the cramps and nausea.
Wednesday’s blood test revealed her total bilirubin has sailed into liver failure territory, but she is not showing any frank evidence of liver failure, such as jaundice. However her skin has been getting very dry, which is a good excuse for a luxurious body massage! Additional treats are finger and foot massages. Massages also help to keep her lymph system flowing.
On Friday 28 November she attended the Queensland Radium Institute for a “palliative” dose of radiation – one “fraction” – accompanied by a big 8mg dose of dexamethasone. Although the dex disturbed her sleep on Friday night, it took about 36 hours before she experienced negative effects from the radiation, with persistent pain in the irradiated area waking her at 2am on Sunday morning. Panadol, her usual painkiller, was not enough, so she took some Tramal, which is roughly equivalent in strength to codeine without the constipating effects. Today she is feeling very tired and “fragile”, but she is still maintaining her usual food intake (which has been increasing).
We will have to wait until December 12 to determine if the tumours respond to the radiation. If they do respond, then she will be given one or two more treatments.
Muktanand’s mother and sister visited from 18-22 November and on 23-24 November we also had a visit from Dr Sundar, an old yoga friend from Bangalore in South India. However, Muktanand has only a very limited capacity for visitors.
A couple of friends have asked if Muktanand would qualify for a liver transplant, but we confirmed with the oncologist that liver transplants are not offered to cancer patients because the cancer tends to re-establish itself in the transplanted organ. In any case Muktanand ruled it out: she says there has to be a point beyond which you let go, and she cited a liver transplant as one example.
Despite what Muktanand calls her “grim” situation, she remains calm and positive.
It is a privilege to walk this path with her.
She sends her love as do I.
John E
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Tibetan Medicine
On Sunday 21 December 2003 Muktanand commenced taking one “Precious Pill” daily. This batch of 25 had been obtained through Chandrabindhu’s husband Bob (living in Sydney) from Italy, where there is a Tibetan medical centre. Muktanand’s Indian friend Krishnaswami later obtained more pills directly from the Tibetan Medical & Astro. Institute (Gangchen Kyishong, Dharamsala – 176215, Kangra District (H.P.) India). She kept taking this medication until Wednesday 11 February 2004, when she vomited up the tea.
The pills are very hard and dense and come wrapped in turquoise coloured silk. They are taken first thing in the morning after soaking in boiling water overnight. In the Tibetan and Chinese traditional medicine systems they are very “cold”, and hard to digest. For Muktanand they were her last hope of an effective treatment.
The pills had been prescribed for Muktanand by a Tibetan doctor, Dr Nida, visiting the Gold Coast. Muktanand spoke to him by phone on Thursday evening 20 November 2003. He told her this “rare Tibetan liver mineral treatment” would be best for her. He said concurrent Traditional Chinese Medicine was okay, but no other chemotherapy or mineral treatment (Muktanand had been taking a mineral mixture based on the Tallberg protocol). The pills are normally taken once a month but he prescribed one daily. Later that night Muktanand dreamt that Dr Nida came to her (looking like Bob) and apologised for not diagnosing her liver cancer, but she told him she didn’t blame him.
Muktanand had seen Dr Nida for a brief consultation on his previous visit to Brisbane in 2001. On that occasion he had diagnosed an “inflammatory process” in her left shoulder blade, where a later CT scan showed a secondary bone cancer. At the time she had tried to fill his prescription via his organisation’s bulk order but couldn’t make it happen.
The precious pills are also known as “Old Turquoise”. On 22 November Muktanand told Sundar one of the reasons she was attracted to them was because she had dreamt “lots of dreams with turquoise blue in them”. Another reason was that Dr Nida acknowledged Namkhai Norbu as his spiritual master, and Muktanand also had a connection with Namkhai Norbu (she once flew to Singapore to attend a conference with him).
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Draft Words for Bulletin That Wasn’t Emailed
24 December 2003
Sakshi came to clean the house for Christmas. Of course when two Satyananda trained yogis get together one of the first things on their mind is cleaning. All those cleaning jobs that fall well below my horizon of vitally important things to do, get done – for example, cleaning the fridge and the oven! Of course I’m not complaining!
*********************
When we saw Muktanand’s GP on Wednesday 17 December we told him about the oncologist’s angry reaction to his suggestion that Muktanand try Laetrile. The GP in turn poured scorn on Muktanand’s second chemotherapy treatment – the Epirubicin – saying there was much less research support for a Taxotere/Epirubicin protocol than there was for post-chemotherapy Laetrile. He also added for good measure that one of Mackintosh’s colleagues had referred cancer patients to him for Laetrile treatment. However, the GP’s gut feeling was that Laetrile wasn’t appropriate for Muktanand and she has decided not to try it. It is also very expensive but that wasn’t a factor in her decision.
Practically every time we’ve seen Muktanand’s GP over the last two years he has said that he senses Muktanand is very angry about something. Muktanand has denied this and in fact has been quite puzzled by the question. She has of course complained from time to time about the failure of doctors to diagnose her cancer earlier, so I took the opportunity to suggest that this was maybe what the GP was getting at. She denied any feeling of anger again – very convincingly – but the GP responded by pointing out there was a huge debate about the merits of early mammography, with the statistics shifting in favour of the camp that said it made no difference to the survival rate.
This response suggested to me that perhaps he been feeling a bit uncomfortable about Muktanand’s late diagnosis. After all, the only doctor who has apologised to Muktanand for her late diagnosis is the Tibetan doctor, and that was in a dream!
We understood however that he did not feel he had anything to apologise for in relation to his medical care of Muktanand. To give him his due, he was the first doctor to diagnose her bone cancer, despite her consultations with several specialists. However, Muktanand was a bit shocked when he told her at the beginning of her illness that CFS sufferers have twice the rate of breast cancer, given that he had never suggested a mammogram.
With Sakshi’s help we later decided that the GP was speaking from the notion that liver disease is a sign of unresolved anger – although he is a qualified GP he is also very alternative in his philosophy.
The GP also expressed concern over Muktanand’s white clothes, saying that white was a funeral colour in Eastern societies. We think this response came from his Asiatic heritage, not from his alternative medical orientation. The white shawl that Muktanand was wearing is one of her favourite shawls.
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Email to Phil Vanderzeil, Acupuncturist
19 January 2004
Hi Phil. The summary history is that Muktanand was diagnosed with primary breast cancer in November 2001 and had a small lump removed in December 2001. Then Gary Deed diagnosed metastatic stage IV cancer in January 2002, with secondaries in her lungs and liver, and extensive secondaries in her bones. Later in January, she sustained a fracture to her right lesser trochanter, necessitating insertion of a pin into her right thigh bone. Plus several weeks in hospital, trying to manage her negative reaction to opioids. Then crutches for nearly 3 months with hydrotherapy to avoid a further fracture to her left hip.
She commenced hormone therapy in February 2002 and by August 2002 the smaller liver cancers had disappeared and the larger liver cancers had shrunk by half. She also commenced monthly Aredia treatments for her bones, after several successful radiotherapy treatments. In December 2002 the radiologists started signalling the liver cancers were returning in her liver but it took until April 2003 to convince the oncologist. She then had a course of Taxotere chemotherapy which was initially successful but at the end of the course the liver cancers had greatly multiplied. The oncologist then put on her a second course of chemotherapy – Epirubicin – but this was completely useless in reducing the liver cancers and as well made her very sick and unable to eat. In October 2003 her liver started to swell noticeably and in November she developed full-blown asciites. In late November and early December she had two radiotherapy treatments direct to her liver, and these have had a positive effect in reducing the liver cancers.
Her asciites has been stable for several weeks now and likewise her liver enzymes, but she is suffering from advanced liver failure with frank jaundice around her eyes. She is also suffering from advanced malnutrition. Her lungs and bones continue to be free of cancer. She ceased all chemotherapy and bone treatments in December.
Her spirits are good, and she is happy much of the time. She obviously needs full time care.
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Email to Leah (Robyn Martin)
20 January 2004
Hi Leah. Muktanand asks me to thank you for your message and particularly to thank you for your Christmas card. She hopes to write to you soon.
She has advanced liver failure with frank jaundice and a condition called ascites, wherein the liver responds to the cancer by dumping a whole lot of fluid into the abdominal cavity, making her look as if she is 9 months pregnant. This would be more tolerable but for the fact she is also suffering from malnutrition and is very weak.
Nevertheless her condition has been stable for a number of weeks, both in physical symptoms and in blood tests. She says she is happy most of the time, and at times, blissful. She sends her love. warmest regards, John
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Email to Phil Finnimore
27 January 2004
Hi Phil. The reason for no update is I haven’t done one! Haven’t had time. Basically Muktanand had two doses of radiation to the liver and they seem to have pulled back the cancer significantly. However, the radiation also damages the normal liver cells and it seems she is still recovering from this.
She has severe malnutrition, she is very weak and she has a fairly severe form of Asciites, which gives her a very swollen abdomen. All due to liver failure. She has obvious jaundice in her face. However her blood profile has remained stable over the past 4 weeks, after revealing a considerable improvement in the LDH enzyme, an indicator of cancer activity.
Her spirits remain good and although she has some bad days, she is happy a lot of the time. She loves getting massages twice a day (for lymphatic drainage). I am so far well. We both find her illness an all-consuming process. Regards, John
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Email #32, 13 February 2004
Dear Friends
Muktanand is desperately ill.
Her major physical symptoms are severe malnutrition, severe muscle wasting, profound physical weakness, gross asciites and whole-body lymphodoema. She suffers from constant shortness of breath and recurrent nausea, although these have been generally well controlled with an oxygen mask and her two anti-nausea medications, Cannabis and Zofran.
All these symptoms are driven by advanced liver failure.
In appearance she has obvious jaundice, her limbs and trunk are swollen with lymph fluid and her abdomen is extremely distended with asciites. She is groggy and tired and has difficulty talking because of breathlessness.
For some information about asciites see the attachment. As best as we can guess she is carrying perhaps 10-15 kg of asciites fluid on her beautiful small body. On Wednesday 4 February Queensland X-Ray drained three litres of asciites using ultrasound technology to locate the pools of fluid, but this procedure was quite weakening and the fluid had built up again by last Monday. She decided not to repeat the drainage. Because of advice of a similar temporary effect, she declined treatment of the asciites with diuretics.
She is not suffering from any “cancer pain”. As far as we can tell she still has no bone or lung cancer, only liver cancer. Apart from nausea and breathlessness accompanied by a racing heart, her only source of pain is the discomfort associated with manoeuvring around her abdomen and getting into a comfortable position. A couple of panadol tablets is all she has needed to go to sleep. She has been repeatedly offered morphine and other opiates but has refused them because they cause her more nausea, as well as drowsiness.
She is at home and is staying at home through this phase of her illness. We have a small team of carers, including some strong women who can lift her, and we are getting excellent assistance from the local Blue Nurses and the Mount Olivet Hospice home care service.
Muktanand is generally comfortable but is too ill to receive visitors.
NOVEMBER BULLETIN
In the November email bulletin I indicated Muktanand would have a second dose of radiotherapy to the liver if her liver enzymes demonstrated the 28 November dose had suppressed the liver cancers. The results were mixed but, according to the radiation oncologist, sufficiently encouraging to proceed with a second treatment on 12 December. The medical oncologist has always said that the LDH liver enzyme is the critical indicator of cancer activity, and this dived from a high of 2006 on 3 December to 500-odd on 2 January and stayed at this level until 2 February, after which it started to rise again. On this measure the direct radiation to the liver reduced cancer activity by three quarters. Her other liver enzymes also plateaued through all of January and her asciites remained stable.
Muktanand received some lovely presents for Christmas including particularly a silver torque with a turquoise pendant, a beautiful turquoise hand-made silk dress, two gorgeous off-the-rack “pregnancy” dresses, and a bedspread and pillowslip set covered with charging baby elephants.
Despite the difficulties with the asciites, Muktanand had a good January. With the help of her yogic chef she experimented with different foods and discovered new tastes she thought were wonderful, probably for the first time in her life (although she has always had a soft spot for Indian style chai). She loved being at home with her Durga paintings and Tara statues and the little breezes we enjoy because of our position. She maintained a daily meditation practice. She reported being happy much of the time and sometimes “blissed out”.
During this time my eldest sister Judy was able to stay and provide support for Muktanand and myself. I know my sister is lovely but after the third person confided in me how nice she is, I began to wonder why they would think this remarkable.
Unfortunately Muktanand’s asciites started to increase in the last week of January, which led to the drainage on 4 February. Her total bilirubin – the main blood indicator of liver failure – had also plateaued through January but rose quite markedly in the last week.
It seems that although the direct radiation to the liver was successful in suppressing the liver cancers, her liver was unable to recover its function, probably as a result of the accumulated insults from the cancer, chemotherapy and possibly radiotherapy treatments. One of the Mount Olivet nurses said the blood tests show only part of the picture and the disease process and treatments must have put major stress on all of Muktanand’s systems, not just her liver but her digestive system, lungs, heart, kidneys and so on as well.
Muktanand’s mother Eleanor, her sister Trish and her brother Graham are joining her at her bedside.
As always, Muktanand sends her love.
John
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APPENDIX: ASCIITES
DEFINITION 1
Asciites is the medical term for the accumulation of fluid in the abdomen. If there is a lot of fluid, the abdomen will become swollen and distended. There are many causes, including tuberculosis, heart failure, cirrhosis of the liver, and various cancers, especially of the ovary and the liver. Malnutrition can cause asciites and is the reason for the typical distended stomach of children in countries suffering from severe famine or otherwise lacking enough food to feed the population.
[The Macquarie Home Guide to Health & Medicine (1991)]
DEFINITION 2
Asciites is the presence of excess fluid in the peritoneal cavity. It is a common clinical finding with a wide range of causes, but develops most frequently as a part of the decompensation of previously asymptomatic chronic liver disease.
[Hepatitis-Central: the Net]
DEFINITION 3 & COMMENTARY
Inside the abdomen there is a membrane called the peritoneum which has two layers. One layer lines the abdominal wall and the other layer covers the organs inside the abdominal cavity. The peritoneum produces a fluid that acts a lubricant and allows the abdominal organs to glide smoothly over one another. Sometimes an excess of this fluid can build up between the two layers and this is called asciites.
Asciites can be a symptom of many types of cancer. The types of cancer that are more likely to cause asciites are: breast, bronchus (main airway), large bowel (colon), stomach, pancreas, ovary, lining of the womb (endometrium).
There may be several reasons for the build-up of asciites:
a) If cancer cells have spread to the lining of the abdomen, they can irritate it and cause fluid to build up.
b) If the liver is affected by cancer cells, this may block the circulation of blood through the liver. This can lead to a build-up of fluid in the abdomen.
c) If the liver is damaged, it may produce less blood protein. This may upset the body’s fluid balance which causes fluid to build up in the body tissues, including the abdomen.\
d) Cancer cells can block the lymphatic system. The lymphatic system is a network of fine channels, which runs throughout the body. One of its functions is to drain off excess fluid, which is eventually got rid of in the urine. If some of these channels are blocked, the system cannot drain efficiently and fluid can build up. The excess fluid can be drained off.
The symptoms of asciites can be very distressing. The abdomen becomes very swollen and distended, and this can be uncomfortable or painful. It can cause difficulty in getting comfortable, sitting up or walking. It can make you feel very tired (lethargic) and breathless. It may also cause feelings of sickness or being sick, indigestion, and a reduced appetite.
The treatment of asciites involves slowing the build-up of the fluid and draining it (which is called paracentesis) to relieve symptoms.
The asciitic drain is usually inserted by a doctor and the procedure can take place at the bedside in the ward or in the out patients clinic. Sometimes the drain may be inserted in the ultrasound department whilst scanning the abdomen. This helps the doctor locate exactly where to put the drain, especially if the fluid appears to be in small pockets and cannot all be drained at once.
When the drain has been removed, there may be a leakage of fluid from the drain site until the hole heals. The site will need to be covered with a dressing or drainage bag until the leakage has stopped. Usually the stitches are removed after about a week. It is possible for the asciites to build up again and drainage may need to be performed more than once.
The doctors may prescribe a diuretic (water tablet) called spironolatone as an alternative method of managing asciites. This can result in you wanting to pass more urine than normal but will slow the build-up of the asciitic fluid.
[Cancerbacup (UK): the Net]
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Email #33, 14 February 2004
Dear Friends
Muktanand stopped breathing at five minutes past midnight this morning, at the start of St Valentine’s day. With her were her mother Eleanor, sister Trish, Sakshi, Kathy and myself.
Muktanand had been deteriorating since Monday and this accelerated on Friday. She had been struggling for breath for several hours, and after suffering two extreme episodes of air hunger she had been sedated with a combination of morphine and midazolam, a serepax-like sedative. Palliative care nurses from the Mount Olivet Hospice attended twice, and instructed us in how to administer needles.
When she stopped breathing it surprised all of us, including apparently Muktanand. I was holding her from behind but Sakshi, Kathy and Trish, who were facing her, said just before Muktanand stopped breathing she displayed an expression of complete surprise, like “Oh my god, this is it!” As if she suddenly realised she’d died.
When we laid her down she looked wonderfully peaceful and extraordinarily youthful – Trish said she looked like she was 16 again.
Muktanand fought for her life almost right until the end. On her last day she managed to get down a couple of soups and most of her tablets. On Thursday night she told me that she still thought she could get through the disease process. Jerome Groopman in his book The Anatomy of Hope: How People Prevail in the Face of Illness, says:
“to hope under the most extreme circumstances is an act of defiance that … permits a person to live his life on his own terms”.
We washed her and laid her out in one of her Xmas dresses on the gambolling elephant bedspread. When her GP came and certified death at 1.30 am, he said she looked very peaceful. In the morning after a bit of sleep we added candles and big bunches of flowers and closed the curtains so that her room, with its puja area in the corner, looked absolutely gorgeous. Muktanand would have been proud of us.
Friends and yoga students came during the day to sit with Muktanand and bring gifts. White Lady Funerals collected her at 7.45pm. We will have a service later in the week and plan to bury her in the South Brisbane cemetery.
Of course, as always, she sends her love.
John
_________________________________________________________
Farewell Service for Muktanand Meannjin
20 February 2004
Uniting Church West End
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Because of its intimate content, this document is not to be reproduced in part or whole without the express permission of Sakshi (Sue Winning) and John Ransley.
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Introduction – Sakshi
I would like to welcome you all, and to thank the Reverend Bob Griffith not only for his wonderful and generous decision to allow us to hold our service in his church, but also for his warm welcome.
We received many, many emails from Australia and beyond and they are deeply appreciated. We had hoped to incorporate them into today’s celebrations, but they are simply too numerous. We will put them together and provide an opportunity for people to read them, in print or online.
There will be people today speaking of their experiences and thoughts and relationships with Muktanand. I would first like to provide a brief history of Muktanand’s life from the time she move to India.
Thank you to John for his careful re-construction of events.
Muktanand History
Muktanand travelled from Toowoomba to North India in August 1974. When she left she only intended to stay for a few weeks but ended up staying in India for 12 years.
In October 1978 her guru Swami Satyananda sent her to Bangalore, a beautiful city in South India, after a group of devotees had asked him to send the author of Muktanand’s book Nawa Yogini Tantra. Once again she thought she was only going for a few weeks but ended up staying several years.
During these years in India Muktanand worked incredibly hard and gained great respect as a yoga teacher and swami, despite battling life threatening high fevers, cholera and typhoid.
In late 1985 she was thrown out of India with about 10,000 other ‘foreigners’, after Mrs Ghandhi’s assassination. She returned to Australia and immediately re-commenced her psychology degree, despite still being under-nourished and weak. During this time she also trained with Lifeline, and then worked for a year as a voluntary Lifeline phone counsellor.
She completed her Batchelor of Arts degree in mid-1988, and started teaching yoga classes in October of that year. She took a year off from university studies in 1989, “so that she could spend more time with her partner John”, but after a promotion in March John was so taken up with work that Muktanand says she had no alternative but to throw herself into developing the Brisbane Yoga Therapy Centre.
So you can thank John for all those wonderful yoga classes!
She enrolled for her Master of Letters degree in Psychology at the University of New England in 1990. In December 1990 she submitted her theoretical thesis ‘The Self: East & West. In simple terms the thesis canvassed similarities and differences between Patanjali – representing “yoga psychology” – and William James and George Herbert Mead – representing Western psychology.
Over the 1990-91 Christmas break she visited yoga friends in Bangalore. In August/September 1991 she conducted a 3-week yoga teaching training course in Sweden and afterwards visited Germany.
In November 1991 Muktanand submitted her practical thesis entitled “Death Anxiety & AIDs: The Impact of Yoga Therapy” to Associate Professor Harvey Irwin. With a bit of judicious lobbying she persuaded her supervisors to give her the two extra marks she needed to secure a High Distinction. The award of her Master of Letters in 1992 marked the end of her academic career ….
… Which was apparently a great relief for Harvey Irwin. When Muktanand sent him an Australian Christmas card which showed timber cutters felling “giants of the forest” his reaction suggested he identified with the giants, casting Muktanand as a giant killer!
During 1995 Muktanand ran a teacher training course in Tasmania in the summer and winter holidays.
In 1996 Muktanand accepted an invitation to be Master of Ceremonies at the Satyananda International Yoga Convention in Sydney. She had been led to accept the role by a major dream, and saw her contribution as an offering to her teacher Swami Satyananda. There was 6 months of considerable work involved on top of continuing to run the Brisbane Yoga Therapy Centre.
Premshakti, from Satyananda Yoga Melbourne, says in an email: “Who could ever forget the amazing job she did being the MC for the World Yoga Convention in Sydney. It was like she was on a transcendental plane, she knew what to say and how to deal with each situation and how she interpreted what Motoyama from Japan was saying was beyond my comprehension, she really saved the day.”
The convention was a great success but afterwards Muktanand was very ill for a couple of months.
When she recovered she told John she felt much more relaxed and less driven. She said she’d accepted at last that she would never be famous, never get enlightened and never make a major contribution in her life. She said enjoyment of life was now her priority.
In late November 1997 Muktanand attended the Vajradhara Gompa at Kyogle to provide yoga classes in a co-teacher role at a Vipassana retreat conducted by Subhana Barghazi. In the first week of December she fell off the veranda of the sleeping quarters at Vajradhara, severely injuring her right knee and putting her on crutches for couple of weeks. It took her the best part of a year with intensive yoga and exercise to regain the use of her knee, although it never fully recovered. This injury forced her to cancel a long-standing commitment to conduct a 2-week residential teacher-training course in Sweden.
Muktanand started the 1998 year feeling tired, and as the year went on this became worse. Over the Easter weekend in April 1998 she conducted a silent meditation retreat at Mangrove Mountain (her second). In March 1998 she commenced another yoga teacher training course (her last), and by the time the course finished in October she was totally exhausted. Mid-year she suffered a very bad attack of shingles. Because of her exhaustion she cut short her teaching term.
At the end of September 1998 Muktanand conducted a silent meditation retreat in Canberra.
Muktanand took a year off from teaching and administration in 1999.
At the beginning of 2000 Muktanand re-commenced teaching one night a week at home, with a special group of old students and friends. She reluctantly returned to yoga teaching that year not convinced that she was fully recovered, although she certainly felt better. She also took on some part-time administration of the yoga centre, and gave a series of chakra workshops, which she really enjoyed.
In July 2000 Muktanand took over the centre administration on a full time basis to re-organise it for the introduction of the GST. At the end of 2000 her senior teacher Ambhikanand had to return to Tasmania because of family illness. Muktanand distributed her classes between herself and Brisbane Yoga Therapy Centre teachers Darshan and Gaynor.
In 2001 Muktanand increased her teaching load to 4 classes per week, including two large classes at the senior citizens hall in West End.
Over Easter 2001 she co-hosted with Alakh Analda a yoga and rebirthing workshop called A Woman’s Journey Through the Chakras, at Ruth Bruggman’s Mudgeeraba centre. Afterwards Muktanand said she and Alakh had had a great time. The workshop had been “absolutely fabulous”, very supportive for Muktanand, and genuinely helpful to the women who attended.
During the first half of 2001 Muktanand was heavily involved in Australia-wide attempts to gain government accreditation for yoga teacher training courses. Earlier on, she had played a big part in developing a set of ethical guidelines for Australian Satyananda teachers.
Towards the end of 2001 Muktanand started preparing for another teacher training course in 2002. There were enough committed people to make it worthwhile, but, as usual, the dilemma was whether she was well enough.
In November 2001 Muktanand told John she had been suffering severe pain in her sternum area on and off for months. On Tuesday 27 November Muktanand discovered a lump in her breast and this was confirmed to be malignant the next day. She immediately decided to cancel the teacher-training course and cut her connection to the yoga centre.
What followed was a two-year struggle with Muktanand’s great courage and determination overcoming seemingly impossible odds. In the end the cancer defeated her body, but not her spirit.
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Before I pass you over to John, a few words relating to Muktanand’s teachings, with acknowledgement of Thich Nhat Hanh:
For transformation to take place we have to practice awareness all day long, not just on our meditation cushion.
Just as vegetation is sensitive to sunlight, mental formations are sensitive to awareness. Awareness is the energy that can embrace and transform all mental formation.
Awareness helps us to leave behind “upside-down” perceptions and wakes us up to what is happening. When we practice awareness we are in contact with life and we can offer our love and compassion to bring about joy and happiness.
Do not lose yourself in the past.
Do not lose yourself in the future.
Do not get caught up in your anger, worries or fear.
Come back to the present moment and touch life deeply.
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Eulogy for Muktanand – John E Ransley
Muktanand had a rich and varied life and it is not possible to canvass more than a few aspects of that life as I knew it. Because of the pressure of time what follows is a kind of riff on her life; please excuse me if it seems disjointed.
It might help to explain that I knew her before she went to India. We met in Sydney in 1969, through our mutual friend Chris Powell, and became close about a year later. In 1971 I moved to Toowoomba to take up a lecturing job in geology, and in 1972 I managed to entice her to join me there.
We were interested in many of the same things, but for my part the key elements of her attraction were her bright intelligence, her strong personality and her sharp tongue – she could be bitingly funny. Plus all the usual attributes of a beautiful young woman.
One of the particular interests that drew us together at that time was the anti-psychiatry movement, best represented in our minds by R D Laing. But there were also many shared interests unconventional, including the counter culture, the alternative substance culture, the hippy movement and fierce opposition to the Vietnam War.
Muktanand had commenced studies for a Batchelor of Arts degree at Sydney University when I met her, but although she had done brilliantly wherever she had tried, she was too young and too much in the turmoil of youth to make a go of it then.
I am not quite sure when she first developed her interest in yoga, but I think it was during her Sydney university days. I know that she sampled the Indonesian mystical group Subud, then, as well as Bob Gould’s meetings above his bookshop, where he tried to interest innocent young first years in anarchism and socialism.
When I met Muktanand she was going with John Kearins, a very fine person who was her first serious boyfriend. So I think it is true to say that I was Muktanand’s second boyfriend. We had many adventures at that time, together with our friends Chris Powell and Tony Harper, who are here today.
After she came to Toowoomba Muktanand developed her yoga practice much more intensively, helped and encouraged by June Henry and her then husband, Karl Jackson. Muktanand always said she loved the physical practices of yoga, despite being an anti-sport student when she was going to school.
Although she lived with me when she first came to Toowoomba , she moved out later so that she could have a flat of her own. Almost certainly my place wasn’t clean enough, and she didn’t want to be stuck cleaning up after me. But also it made it much easier for her to do her daily yoga practice.
We had drifted apart by the time she went to India in August 1974, but I kept in touch and tracked her down to the Monghyr ashram in early 1976 – what is now known as the “old” BSY. I stayed there for about three months, working first in the press under Hariprem, and then in the editing department under Nischalanand. While I was there I edited the first version of Swami Satyananda’s Yoga Nidra book.
During that time I stayed at the Skye ashram some distance away, while Muktanand was accommodated in the main ashram. Relationships were actively discouraged so I didn’t see too much of her, but I remember that on the second day that I was there Muktanand “stole” some things I’d left lying around and later returned them, just to disabuse me of any pre-conceptions I may have had about the nature of the ashram.
I had always intended to travel to England so when I finished the Yoga Nidra book I started to think about moving on again. What prompted me to leave was when Swami Satyadharma pointed out that I had started to speak to newcomers like I was an old ashram hand.
During the twelve or so years Muktanand was in India she didn’t write very often because ashram policy discouraged correspondence. Nevertheless we maintained sufficient contact to enable me to follow her ashram career with interest.
When she returned to Australia in late 1985 I was desperate and dateless and rushed to Sydney to meet her during the Christmas holidays. Once again I managed to entice her to Queensland. By this time she was a mature woman, still young, with a hoard of fascinating stories about India and an intellectual and credential hunger to finish her university studies. The photo on the order of service dates from this period. It was immediately apparent to my untrained eye that she had developed extraordinary skills as a yoga teacher, and that she had acquired a great depth of knowledge of the yoga tradition, at every point through the filter of intensive personal practice.
Initially I invited her into a shared house in Miller Street, Hill End, but it was not long before she started agitating for cleaner premises. In August 1986 I purchased the house at 18 Rosary Crescent and we have lived there ever since.
* * * * *
Many people have said to me ‘what can you say’ about Muktanand’s premature death. One thing I can say is that in Muktanand’s Master of Letters thesis on yoga psychology, she writes the following about “abhinivesha”, a Sanskrit term for one of the “kleshas” or obstructions that prevent the ultimate recognition of the self as pure awareness:
“Abhinivesha is clinging to life, or conversely, fear of death (Yogasutra 2:9). However it is extended to all forms of clinging and attachment, of which clinging to life is the strongest. Like the other klesha it has its origin in ignorance of the transcendent nature of the self, which prevents us from recognising death – not as an end – but as yet another transformation of consciousness. Even the wise – the seers of the self – are subject to clinging and fear of death, albeit in attenuated form, indicating just how strong this tendency is in human nature.” [p.61]
Muktanand would certainly scoff at the suggestion that she was one of “the wise”. She had the same measure of the fear of dying that most – but not all – of us have. This was certainly a major factor in her fierce struggle to live, although there were other strong factors as well – such as her desire to write the definitive book on yoga psychology, her two thirds completed translation of the Durga Path, her plans to retire to her country cottage, and her desire to simply have more fun and spend more time relaxing with friends.
In her fight against her illness, she drew strength and inspiration from whatever seemed to work, but she drew inspiration particularly from dreams and strength from the story of Durga’s battle with the demons. I should explain that Durga is an Indian deity, a goddess, possibly the last thing you would think that Muktanand would be interested in: but you have to remember she was brought up a Catholic, and they have a very strong tradition of devotion to a powerful mother of god figure!
Two major dreams seemed to show how Muktanand’s illness would end. In the one given to her by a friend, she emerges into sunshine, surrounded by light and love. In the other there is similarly joy and light and an enthusiastic kiss for someone called Kundan.
Both major dreams were murky as to whether or not she actually would live through her illness, but she chose what she thought was the most optimistic ending. These and other dreams sustained her throughout the two years of her illness, and the story of Durga’s successful battle with the demons inspired her to face the worst parts with great courage. Like Durga she was literally involved in a fight to the death.
This was not the first time in her life where the interpretation of her dreams was a life and death issue – in early 2002 she thought she had only a few weeks to live – but it was obviously the first time where the stakes were so high. Several times she said to me that if her interpretation turned out to be wrong, at least she would have avoided a lot of mental suffering.
Muktanand’s dilemma was encapsulated in the quote I have already read from her thesis. Muktanand never claimed to “know” that death was “yet another transformation of consciousness” although she had friends who did. Her integrity and intellectual honesty prevented her from clutching at this notion for reassurance, even though it is a core teaching of the yoga tradition.
As best as we can determine, avoiding hindsight and embellishment as much as humanly possible, the five of us privileged to be present when Muktanand died believe that at the moment of her death she received the transformation of consciousness that had eluded her all her life.
* * * * *
Muktanand was a senior teacher in the Sivananda – Satyananda lineage, formally recognised by her title of Yoga Acharya. In an opinion shared by many people she brought to her teachings an absolutely unique combination of heart, mind and physical skill. If she had had sufficient health and energy to run week-long silent retreats modelled on the retreats she did at the Mangrove Mountain ashram, serious students from all over Australia would have been breaking down the doors to get in.
In her last years Muktanand often expressed the wish that she could just go somewhere in Australia and do a silent retreat run by someone else in the yoga style that she loved.
She also would have loved to access for herself a more senior practitioner in the yoga tradition, but this wasn’t available in Australia and she felt that she couldn’t afford to stop work and go looking in India.
If Muktanand had any one regret, it would have been that she didn’t stop work much sooner. In her collection of “inspiring quotations” in her Retreat manual, she has several quotes about work. One comes from Brother David Steindl-Rast who points out that the Chinese word for ‘busy’ is composed of two characters: ‘heart’ and ‘killing’. The other quote comes from Bertrand Russell who says: “One of the signs of an approaching nervous breakdown is the belief that one’s work is terribly important.”
* * * * *
Although she only left a few scraps of writing – a tiny part of what she was capable of – we have at least plenty of photos!
I have a sense she will always be with us in spirit in whatever way we remember her: as lover; yoga friend; strict asana teacher; heart meditation teacher; skilful counsellor; bossy boots sister or loving daughter.
One of her favourite mantras was OM, which can also be used as a form of salutation: [turning towards the coffin, hands together Indian style] OM to you Muktanand!
I would like to finish with a simple poem I discovered in Muktanand’s things written on the 18 January just past.
* * * * *
BEING HERE
my reward
for getting up early –
the first sunlight
gilding the gums
blue sky and fragrant air
washed clean by days of rain;
the quiet, the birds –
that spurt of joy!
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“A Little Prayer” by Evelyn Glennie, played on the recorder by Carmel McNeill
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Sisters – Trish Stephens
Muktanand was born into a fairly conventional family. She was the eldest of three children, with myself and our brother Graham.
From an early age, she displayed a desire to lead people. We shared a bedroom for 16 years and she was quite happy to tell me what I should and shouldn’t be doing and would go absolutely bananas if the room was in a mess. At one stage, things got so bad that we decided to divide the room up so she could have her half spotless. She ended up with more floor space than me, but luckily for me, the bedroom door was in my half, so she had to learn to negotiate fairly quickly.
She also displayed her desire to achieve and her disciplined personality whilst at school. She would go to bed at 7.00 p.m., sleep until midnight, study until 4 or 5 in the morning, then go back to bed for a few hours before going to school.
Muktanand and sport didn’t mix. When she wasn’t studying, you could usually find her on her bed, sucking her thumb and reading a book.
All the studying paid off. She came first in the class, Dux of the school and received a scholarship to go to Sydney University. At 17 she left home and entered the bohemian world of university students. From this point on, our lives were vastly different.
At 23 she went to India for 12 months to train to be a swami, but ended up staying for 12 years. Here her determination to succeed and her sheer stubbornness were valuable assets in dealing with the often harsh and difficult life she was living. Sometimes you received letters and sometimes you didn’t. On as least two occasions, Mum had to contact Foreign Affairs to see if she was still alive. Mum gave up waiting to hear and went to India to see how she was going.
In India, her will to live was demonstrated when she managed to overcome a number of life threatening illnesses. But it wasn’t all bad news. After a while she moved to Bangalore and to Coimbatoire where she set up ashrams. Her clients were the rich and famous of India. She used to tell us that if people wanted to see her, they would send their drivers to pick her up. Life was good.
Fortunately for us, the Indian Government decided not to renew expatriate visas and she returned home.
When she first came home, things were difficult for her and it took a while to adjust back into the Australian way of life. She had never heard of an ATM and couldn’t understand why we didn’t need to go to the bank to withdraw money. Her Indian accent was so strong that many people found it difficult to believe that she was born in Australia. Three months after coming home, she went to Queensland to stay with John.
While she was away I married Vic. Two years after she returned we had Gareth and then we had Evan. When they were babies, she wasn’t quite sure what to do with them. However, very soon she was more than happy to take on the role of Aunty. The boys thought it was cool that she was reading the same books as them and they could discuss the pros and cons of the latest Harry Potter book.
Most of you know the rest of the story from when she moved back to Queensland and opened her own Yoga School showing her determination to be the very best teacher she could.
I remember the day she phoned to tell me she had cancer and how scared she was. It was scary for us too, as you never knew when you saw her if it was going to be the last time.
From then on things turned full circle. In October, Mum and I came to visit Muktanand and John for three days. We had a great time doing sisterly things. I tinted her eyelashes, we looked at family photos of when we were young and chattered about the boys.
When I found out that Muktanand had cancer I was so angry. Why should this happen to someone so young? What were the doctors doing? But I don’t feel that any more. I understand that her work on earth is done. I can see that she has achieved so much in her short life and that she had such a positive impact on people. To love and be loved by so many people is surely a magnificent achievement.
The family would like to thank all the people who helped look after Muktanand during her illness. I would especially like to thank Chandrabindu for preparing Muktanand’s meals and to Sakshi and Kathy for their help, not only with Muktanand, but also for their support in this last week. Our hearts go out to John who gave Muktanand his love and constant support and for taking such good care of her.
Although she is no longer with us physically, I know each one of us will be touched by her spirit and remember her bright eyes and beautiful smile.
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Muktanand’s Way – Eoin Leibchin Meades
Firstly I would like to acknowledge the level of care given to Muktanand over the last few years. Sakshi, Kathy and many others had major & minor parts in that. Life called them and they answered Life is happy. Mostly however, I wanted to acknowledge the meticulous care John gave to Muktanand, so her needs were well taken care of and she could totally give herself to the process.
When I said to John -”You have made a standard for the rest of us.”
He answered -“ Muktanand has really set the standard.”
And though that may be true, it also shows the level of selflessness John had in the process.
“Behind every Great Woman is a good man”.
Muktanand will be remembered for many things – her purity, exactness, pioneering spirit, and her need for cleanliness. But I think what will come through again and again was – she was a friend and a Spiritual Friend at that.
I remember well when my wife Kerstin first came to Australia: Muktanand took her under her wing. After the first time I drove her to Rosary Crescent she had to make it on her own and it was forever the standard for all her journeys around Brisbane. I would say – “You go Muktanand’s way, then when you get there, turn left or right or whatever”.
It was a standard – Muktanand’s Way.
I think in so many ways she set a standard, her Yoga, her lifestyle, her way of life, were all something that we can measure up with ‘Muktanand’s Way’. It’s a good way, a good standard for us all.
When Kerstin asked John if there were any requests for the funeral or arrangements made by Muktanand, John answered – “ She didn’t want to die. She wanted to live”. So in a way she never went up that street and yet here is her shell of a body that could no longer contact her Spirit. She has gone through a doorway that few of us can pierce. Although my wife Kerstin, in her dream, spent a busy night at the Wake with Muktanand talking to everyone.
But, has she died? For me, “Muktanand Lives”.
Those beautiful qualities, which she sent out into the world, live in us. As we treasure her and those qualities, they grow in these qualities, she and herself, us live in us. And when we leave our bodies (all of us someday will) it is those parts of us that have touched others that will carry us throughout time. This is our real inheritance to the world and others. It is this Love of how another has touched us that helps us grow and it is this Love that will, time and time again, draw us back together if we ever need to meet.
For me, “Muktanand Lives”.
I want to do a small reading. Its a Buddhist one as I have a Buddhist background. It’s called: – Hakuin Zenji’s Song of Zazen.
Now Zazen can be interpreted many ways but for me it’s those moments when Mind, Body, Spirit, all fuse in Union of Being. It is moments of Enlightenment and whether you are with others or alone it is these moments that bless the earth, bless life. Muktanand’s life was full of such moments of Enlightenment.
HAKUIN ZENJI’S “SONG of ZAZEN”
All beings by nature are Buddha,
as ice by nature is water.
Apart from water there is no ice;
apart from beings, no Buddha.
How sad that people ignore the near
and search for truth afar:
like someone in the midst of water
crying out in thirst;
like a child of a wealthy home
wandering among the poor.
Lost on dark paths of ignorance,
we wander through the Six Worlds;
from dark path to dark path-
when shall we be freed from birth and death?
Oh, the zazen of the Mahayana!
To this the highest praise!
Devotion, repentance,training,
the many paramitas-
all have their source in zazen.
Those who try zazen even once
wipe away beginningless crimes.
Where are all the dark paths then?
The Pure Land itself is near.
Those who hear this truth even once
and listen with a grateful heart,
treasuring it, revering it,
gain blessings without end.
Much more, those who turn about
and bear witness to self-nature,
self-nature that is no-nature,
go far beyond mere doctrine.
Here effect and cause are the same;
the Way is neither two nor three.
With form that is no-form,
going and coming, we are never astray;
with thought that is no-thought,
even singing and dancing are the voice of the Law.
How boundless and free is the sky of Samadhi!
How bright the full moon of wisdom!
Truly, is anything missing now?
Nirvana is right here, before our eyes;
this very place is the Lotus Land;
this very body, the Buddha.
Lastly, I just recalled that when Ramana Maharishi, a great Indian Sage, was dying of cancer, one of his disciples said – “Please Ramana don’t leave us”. Ramana looked up and smiled his radiant smile and said with total purity – “Where could I go?”
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Gayatri Mantra, sung and accompanied on guitar by Alissa Dobros
Om bhu bhuvaah svaha
Tat savitur varenyam
Bhargo devasya ddheemahi
Dhiyo yo naha prachodayat
Om … on the physical, subtle and causal planes
we meditate on the divine light of that
adorable sun of spiritual consciousness.
May it stimulate our power of spiritual perception.
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Poem from Michele Burford, read by Kerstin Leibchin Meades
Muktanand
Released from the burdens of the flesh
Your spirit unshackled by earthly needs
Seen in the first rays of sunrise
Dancing in the light across the water
Listening in the stillness of calm evenings
Brushing gently on the hearts of those that grieve
Evoking memories of your teachings,
your knowledge, insights and wisdom,
And the boundless love you gave as teacher, friend and guide
Michele Burford, 18 February 2004
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The Garden – Belinda Cox
In my view a great teacher is someone who:
(a) Walks their talk
(b) Is passionate about their topic and implants that in their student’s heart and …
(c) Someone who has internalised their understanding of a subject to a level where they not only embody it, but can present the information in varied and meaningful ways that assist understanding.
To say Muktanand was a great teacher does not seem enough. She was all of this and more. Muktanand didn’t just teach “yoga”, she taught how to live with a yogic attitude and how to ground spiritual practice in daily life.
When Muktanand first became aware of her diagnosis, it seemed like eternity before we could talk about it or communicate with Muktanand. Initially Muktanand had told us that she felt her life had been a waste and she didn’t feel that she had achieved very much. We were incredulous, but still unable to express our feelings.
When the news of her illness became more public, I wrote Muktanand a letter outlining just how much she meant to me and had contributed to us all. What I felt was Muktanand had been like a spiritual foster mother and the wise feminine role model that we seemed to have lost in society. I told Muktanand that I saw her as an intuitive gardener:
(a) Preparing our souls as the soil
(b) Tending to each student’s individual needs
(c) Appreciating and supporting our different qualities
(d) Nurturing and encouraging our growth
I hoped, after ceasing teaching, that Muktanand now saw what she had created – A BEAUTIFUL GARDEN. After receiving the letter, Muktanand rang to say how much this meant to her, but I didn’t fully appreciate it’s true significance at the time.
After Muktanand’s passing, John sent through a dream that she had when leaving Monghyr for Bangalore, which supports this vision. The following is an excerpt of Muktanand’s recollection of the dream:
“Just before I went to Bangalore, I had this dream. I don’t think I even knew I was going to be sent. I thought I was only going for three weeks.
I dreamt I met Swami Satyananda. He took me outside and showed me a wide expanse of desert. It was all brown and quite barren, except for spinifex-like bushes. It was very hot and dusty and dry, no trees. He said to me that I had to make this wasteland into a garden. He said, ‘You know how to do that don’t you?’ I said no, I didn’t. He said ‘How could you not know when you’ve been here all this time?’
Anyway he whisked me into his laboratory inside. There were long benches with all kinds of laboratory equipment on them, such as Bunsen burners and titration pipettes. He started working very quickly with some flasks. He didn’t explain what he was doing, but I was able to watch as he ran around the laboratory and made up what seemed like magic potions. I was amazed at all the things swamiji knew. I don’t remember more than that. When I woke up I had the feeling I had been taught something important.
The full import of that dream didn’t really come to me until much later … that’s when it hit me that this was a form of initiation in dream. Swamiji was trying to teach me something. He was implanting things in me that would come out. In fact, the knowledge was within and this was a way of transmitting the knowledge.”
What is also special is that on the last retreat with Muktanand – Easter of the year she received her diagnosis – I had a series of meditations involving a sacred garden being created in my yard. Each time I sat down to meditate over the 4 days, another layer of my garden appeared along with other visions.
Almost 3 years later, my sacred garden was finally able to take shape and was scheduled for completion before Xmas last year. After considerable delay for various reasons, the plants only went in last Friday and Saturday. On Saturday morning the 14th of February, I awoke and suddenly needed to place my sculpture – a trio of peaceful Buddha’s – under the feature tree in the garden’s sacred centre … they had been in storage for over a year … I heard of Muktanand’s passing soon after this.
Muktanand, I hope you can now view the extensive spiritual landscape that you have created. We are left living within and breathing your life’s contribution. We appreciate the beauty of this garden and thank you for your vision, the knowledge you have implanted in all of us, your wizardry and your beautiful creation.
….… HARI OM TAT SAT …….
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Darshan’s Thanks
I had hoped that by listening to others today I might gain a better understanding of Muktanand’s role in my own life. It was through friends and colleagues of Muktanand that I learnt of her experiences and how she had touched others with her knowledge and assistance.
When I observed her teaching what amazed me was how simply and practically she could explain the different ideas, systems and imagery of yoga. Whether we were physical, emotional, devotional, or spiritual in nature, all of us could have a very real experience of the divine while in her presence.
My fondest memories of Muktanand are of when she was her most direct, blunt and maybe a little rude. I treasured knowing that she could again pierce my ego and bring me back to Mother Earth.
Teaching and working with her over the years never really brought me any closer to her. Many times I’d think of phoning or wanting to speak to her about different issues or questions that I had. These issues became trivial when in her presence and eventually the answers came from within.
I’d like to share some of my questions and Muktanand’s replies:
(a) Once before going to Mangrove, I visited her hoping to gain an insight of what may lay ahead for me. She handed me the airbus timetable so that I could get from Sydney to Gosford without too much drama.
(b) Before beginning teaching at the Kurilpa Hall to larger numbers of people, I thought she might be able to offer some advice. When I approached her she proceeded to explain using words and diagrams how the room was to be set out and most importantly how the storage cupboard was to be packed.
(c) I asked her for her advice on teaching Tratak, candle meditation. She said to use a saucer so there wasn’t any wax spilt on the floor or mats. If wax was spilt, she provided me with detailed notes on the materials and procedures that were to be followed to have it removed.
The teachings of yoga strongly influence my life and Muktanand enabled me to experience the teachings. She helped awaken many of us; she will remain within me.
I’d like to finish with a verse from ” High on Waves” (changed just a little):
My gracious sage has gifted me with her secrets
And now I know
There is no answer,
Only further questing towards
That which is wholly beyond
Both the anguish and joy of living.
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Muktanand’s Essence of Breath Meditation
Gaynor Long
Muktanand would not run a yoga workshop, lecture or talk without incorporating at least some aspect of yoga practice. It seems fitting to do the same today.
Muktanand was known for her wonderful approach to so many traditional practices. One of these is her Essence of Breath meditation. Gaynor Long, Muktanand’s friend, student and Muktanand-trained Yoga teacher, will guide us through a short version of this meditation.
Before we begin, I would like to share some writing I discovered from Muktanand’s notes, regarding her attitude towards breath as a meditative tool:
“With our breath we incorporate something that exists outside our being and we give it back to the external realm after a short while. Thus, in the experience of breath, we become fully aware of life as never-ending change expressed in a continuous process of taking and giving.”
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Shanti Path
Asato maa sud gumuya
Tumuso maa jyotir gumuya
Mrityor maa umritum gumuya
Saarveshum swustir bhuvutoo
Sarveshum shantir bhuvutoo
Sarveshum poornum bhuvatoo
Sarveshum mungulum bhuvutoo
Loka sumustaa sukhino bhuvuntoo
Om tryumbukum yujaama hai
Sughundhim pushti vaardhunum
Uwaar ukamiva bundhunaat
Mrityor mukshee umumritaat
Muktanand’s Translation
From untruth lead me to truth
From darkness lead me to light
Lead me from death to immortal essence
To all beings, goodwill
To all beings, peace
To all beings, fulfillment
To all beings, favourable conditions
Happiness to all beings in all realms
[Mahamrityunjaya Mantra:]
Salutations to the one whose third eye is open
Whose very being is like a sweet fragrance
Preserve me from death until I attain spiritual maturity
So that I pass into eternal consciousness
As easily as the ripe fruit falling from the vine
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Graveside Ceremony
South Brisbane Cemetery, next to Dutton Park
Durga Mantra:
“Aum shri Durgayai namaha”
[All Glory to Durga]
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Footnote
Muktanand’s story will feature in a collection of interviews with Yoga Teachers, published by Allen & Unwin, edited by Alix Johnson, and due for release in June 2004. The provisional title of the book is “Yoga: the Essence of Life”.
The publishers of the journal, Australian YOGA Life, have very kindly allowed John Ransley to write a memorial piece for the March 2004 issue in place of their usual editorial.
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Because of its intimate content, this document is not to be reproduced in part or whole without the express permission of Sakshi and John Ransley.
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Inaugural Muktanand Meannjin Award
Speech by John E Ransley
Saturday 15 May 2004
June Henry’s Yoga Studio, 8b Herries Street, Toowoomba 4350
Muktanand Meannjin, Yoga Acharya and Director of the Brisbane Yoga Therapy Centre, died in February this year after being diagnosed with last-stage breast cancer two years previously. She had ties to June’s yoga school in 1973-74, and it is entirely appropriate that this award is given in her honour.
Muktanand’s adventure with yoga began in Sydney in 1969 when she enrolled at Sydney University for her Batchelor of Arts degree. At high school she had avoided all types of team sports but nevertheless she believed in exercising and being healthy. She commenced yoga classes as a way of keeping fit with a minimum amount of effort – she said that is how she understood yoga at the time.
Without knowing anything about yoga she did a course of hatha yoga classes at Michael Volin’s Sydney yoga school, taught by his brother. She never met Michael Volin nor did she know at the time that he was a well known Australian yoga teacher who had been initiated by Swami Satyananda. So there is a nice connection there between Muktanand and that older generation of Australian yoga teachers, as well as with Swami Satyananda.
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When Muktanand came to Toowoomba in 1972 she was initially at a loose end looking for a job and took the opportunity to start yoga classes with the Gita School of yoga. She became very involved, attending three classes a week as well as keeping up a daily home practice of one and half hours or more. She found herself enjoying it a lot more than before, as well as experiencing great improvements in her health, flexibility and relaxation. Even after she commenced work she would rise at 5.30am or so in the morning to do some practice, and for a while she also added daily morning readings of the Bhagavada Gita.
It was through Gita that Muktanand met June Henry. She liked June’s style of teaching and over time became quite deeply involved in June’s school of yoga.
It was from June and her then-husband Karl Jackson that Muktanand first heard tall tales and true of the Bihar School of Yoga in Monghyr and Swami Satyananda. I also remember these. These tales were an intriguing mixture of concentration camp and “Exotic India” (the excellent website) or Sarah McDonald’s book Holy Cow. In 1973 June and Karl and a few of their yoga teacher friends attended Swami Satyananda’s Golden Jubilee in India. When they returned they regaled Muktanand and their other yoga students with lots of stories – how wonderful it had been, and how terrible the food, the heat and the conditions had been. They showed slides of the festivities and told how they had been allowed to do a kriya yoga course, which was then considered a fairly advanced thing to do. All in all they created an attractive albeit challenging picture of ashram life, the promise of the authentic tradition as it were, and in the end they managed to motivate not just Muktanand but several other students into going there.
When Muktanand came to Toowoomba she was still searching for a direction in life. She decided that her next step would be to go overseas.
June had suggested to Muktanand that she could stop over in India on her way to Europe, pick up some yoga teaching training at the Bihar School of Yoga (BSY), and then teach yoga when she returned to Australia. Muktanand had never had any interest in going to India, but was prepared to go there to further her yoga studies.
In mid 1974 Swami Amritananda came to Australia and Muktanand went to Sydney to meet her and to take Mantra Diksha. Karl Jackson was about to leave for BSY for treatment of his heart condition and he asked Muktanand for the hundredth time to accompany him. Muktanand agreed to go on condition he arranged everything. What precipitated her decision was when an old school friend told her over the phone that she sounded “really depressed”. She purchased a ticket to London with a six week stopover in India. She thought she might never come back. She travelled straight to the ashram with Karl and Hridayanand, the current director of Mangrove Mountain Satyananda Ashram, Gosford
When Muktanand left Australia she thought she had been a failure at everything – university, relationships, finding work that she could love.
When she returned to Australia twelve years later she was totally transformed.
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Muktanand arrived at the Bihar School of Yoga in Monghyr on her twenty third birthday. It was a huge struggle for her, but she ended up staying there for a bit over four years. Then she was transferred to Bangalore in South India where she founded an ashram that continues to function to this day.
Why was it a huge struggle? For starters, it was very strange. The ashram was surrounded by 3-metre high brick walls with wrought iron spikes on top. The entrance was a big green metal gate that was permanently locked. Outside was a swampy area with a dirt road, along which there were regular funeral processions.
Nevertheless Muktanand was glad to arrive and her first impressions were of quietness and peace.
First impressions were soon overtaken by other aspects of ashram life. One of the biggest problems was the climate. Muktanand had arrived during the monsoon season and she found the heat and humidity a terrific burden. The Indians kept telling her how cool it was, but she felt she could hardly breathe. It took her the best part of two years to accommodate to the climate, but for ever after she had an aversion to tropical or sub-tropical summer weather, such as you get in Brisbane. A Swedish swami, Nirvikalpa, barely survived one summer before she had to return home.
Sleeping arrangements consisted of wooden beds arranged in sex-segregated concrete box dormitories with ceiling fans (and fluorescent lights). Mattresses were made of packed cotton, like an extremely thin futon. Each bed had four sticks, like garden stakes, to hold up the mosquito net. These beds took a bit of getting used to for a Westerner used to inner spring mattresses! In the monsoon season the whole ashram would sometimes be flooded by the nearby Ganges River, so that everyone had to retreat to the roof to sleep.
There were flushing toilets and showers but Muktanand was a bit shocked to find there were also open drains. The kitchen was an outside area under a tree, with a couple of coal-fuelled fires. All the food was prepared by the cook and his helpers sitting or squatting on the ground.
The kitchen was probably a sensible adaptation to the climate but the food was something else. It was usually a very basic Indian mixture of dahl, rice and chapatti, with sometimes a little seasonal vegetable thrown in. You just stood in a queue with your enamel cup and tin plate and accepted whatever was doled out to you. It took Muktanand about a year before she really adapted to it, a whole year in which her hunger was never psychologically satisfied. Everyone suffered from food cravings and fantasised about what they would like to have for the next meal. The Australians fantasised about grilled cheese and tomato sandwiches – not meat pies as you might have expected (this was the 1970s). Like most newcomers Muktanand periodically escaped to the local markets for sweets and chai.
Some time later, after she had vehemently refused an offer to be put in charge of the kitchen because it offended her feminist sentiments, Swami Satyananda explained to her that the food was deliberately plain and simple to provide the swamis with something to take their anger out on. He claimed he could have provided a very nutritious and varied diet but he chose not to, because it would have defeated this purpose. As a result, the most common source of complaint was the food, and food was also the most common topic of conversation. Muktanand said the food was lousy and it was a wonder they didn’t all die of malnutrition. None of the women menstruated, for example.
There was also illness. Muktanand suffered from diarrhoea for the first 18 months. She lost a lot of weight and was tired all the time.
She also suffered two very severe bouts of illness while she was in Monghyr. In July 1977 she developed a week-long high fever and the ashram authorities became quite worried she would die. This was entirely possible, as a Brisbane man called Graham Cathcart had died after staying at the ashram in the early 1970s. And then in June 1978 she contracted a severe dose of cholera and again it looked as if she might die.
But her biggest bugbears were climate, food and thirdly, discipline, including Indian attitudes and cultural assumptions. Visitors were indulged for a while but if you stayed you were expected to work. Muktanand only lasted a few days before she started getting bored and asked for work.
Swami Satyananda put Muktanand to work in the press. Her first task was to compile a glossary for a book on meditation, something she quite enjoyed doing. Then Bhaktanand, the American swami who was running the press came and asked if she could type. She told him very forcefully that actually not every woman is put on the earth to type, and no, she couldn’t type. Typing had been one of those skills Muktanand had vowed never to learn, because she didn’t ever want to end up as a secretary. Nevertheless, Bhaktanand proceeded to set her up with a typewriter and there was nothing for it but to type. I should mention that Bhaktanand kept a vow of silence and communicated solely by writing notes.
Muktanand worked in the press for some time and then she drifted into other things, for example offering to help Shantanand address and stuff envelopes with Kriya Yoga magazine. She was unaware that she was not supposed to do this, and every now and then Swami Satyananda would call her back to the press, usually causing a mini crisis. Every few months she would decide it was time to leave, and he would persuade her to stay by one means or another. On one occasion he offered her a place in a kriya yoga course. On another occasion he extracted a promise from her that she would not leave until she finished her current task, a glossary for one of his books. It affronted her to know that he would think she would leave without finishing, but then she discovered that the glossary became an ever expanding task, first a Sanskrit dictionary of terms used in Tantra, and then a Sanskrit dictionary on terms used in Vedanta. She knew she had been had, but she stayed on and by the end of twelve months she was ready to take sannyas.
She was very angry a lot of the time. She had great difficulty adapting to monastery conditions and an authoritarian system where instant obedience was expected, especially obedience to Swami Satyananda. In the first three months she was permitted to go walking outside the ashram on her own, as a way of dealing with her feelings. Sometimes she used to walk for a whole day to walk off her feelings. She didn’t realise what a tremendous concession this was. White woman roaming around the countryside in the poorest and most violent state in India.
Later, she says, when she started to misuse this privilege just because she was restless, Swami Satyananda refused to let her go. She started a campaign to be let out by going to the gate every afternoon and asking to be let out. Eventually, Yogamudra, one of Swami Satyananda’s messengers, told her that Swamiji had said he was not going to let her go and if she couldn’t discipline herself, he would do it for her. She was furious for a while and then she accepted the rationale for this.
All of these difficulties were compounded by other things that were happening. One swami fell in love with her. She had to put up with sexual harassment from at least one swami and attempted bullying from others. When people tried to put one over her she was perfectly ready to give them a piece of her mind, and she could be very cutting. She had a sharp tongue.
Finally, there were the yoga classes, or more precisely, the lack of them. She hadn’t been there long when she discovered there were no regular yoga classes. The whole daily life of the ashram was devoted to work, which was called karma yoga. Karma yoga was said to provide the dual benefits of productive work, eg writing and publishing books of Swami Satyananda’s teachings, and spiritual training. One way of describing the karma yoga philosophy is that working in a spiritual community produces the same benefits as training for meditation. The three biggest work tasks in Monghyr at that time were the printing press, administration and cleaning the ashram.
Visiting yoga students could have lessons but there was limited capacity for this. Either Swami Satyananda assigned someone to give private classes, or you persuaded one of the permanent swamis to give you lessons on the side. In the beginning Muktanand took some classes from Swami Shantananda, a Latvian war refugee who had lived in Australia before joining the ashram.
It was not unusual for aspiring yoga students to turn up at the ashram with plans to stay for several months, and then to leave after a few days when they discovered there was no regular hatha yoga program. But Muktanand stayed.
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Lousy food, terrible climate, acute and chronic illnesses, strict discipline, culture shock, and no yoga classes. Why did Muktanand stay when it was so hard? From the very first day she arrived Muktanand thought there was something special about the place. Her two week visit was extended to 6 weeks, then she deferred her plane flight and stayed for 3 months, then another 3 months, and eventually, after a couple of years she took sannyas and became a swami.
Muktanand always made a distinction between what she called her “social self” and her other self, the self that knew what was truly good for her. So for her most of the difficulties she experienced in those first few years were experienced by her social self. Although she was totally buried in the ashram process and lacked the perspective she gained later, she instinctively felt the challenges that were laid upon her were ultimately for her own good, both for her own true self – her spiritual process if you like – and for her social self.
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In 1978 Muktanand was sent to South India to establish an ashram in Bangalore. In 1980 she contracted her third near-fatal illness, typhoid fever, and when she returned to Australia in 1985 she was still suffering from poor health. Despite this, she threw herself into university studies and then, after she had completed her BA, established the Brisbane Yoga Therapy Centre.
She was a very determined woman and a great fighter. Once she had decided a course of action, she always carried it through, despite any personal costs. When she was eventually confronted with a disease that all the doctors were saying would be terminal, she fought it to her very last breath.
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June suggested this award should go to the student showing exceptional courage and persistence in her yogic studies. I think it is a very appropriate way of celebrating Muktanand’s life. The award goes to Meagan Walker.
Second Muktanand Meannjin Memorial Award
Speech by John E Ransley
Saturday 11 June 2005 2pm
8b Herries Street, Toowoomba 4350
I would like at the beginning to thank June very much for inviting me here and also for the idea of a Muktanand Meannjin award. This is the second occasion the award is being granted. Last year I spoke about some of the difficulties Muktanand encountered when she first went to India. Some of that story is told in the book Yoga, The Essence of Life, by Alix Johnson. This year I want to speak very briefly about an aspect of Muktanand’s yoga practice that is not generally known.
The Monghyr ashram that Muktanand joined was a Tantric yoga ashram. I doubt that she understood that at the beginning, but nowadays you need only consult Swami Satyananda’s books to see this. This is not to say that his teachings don’t place heavy emphasis on classical or Raja Yoga: the main focus of the ashram’s teachings are on the cleansing practices, bodily postures, breathing, and meditation exercises that constitute Raja yoga and are common to other forms of yoga. The APMB (Asana, Pranayama, Mudra and Bandha) is probably Satyananda’s best-known text.
But Satyananda yoga is tantric in all the following ways:
• the active use of work as spiritual practice, ie Karma Yoga. The main day-to-day activity of the ashram was as a publishing house;
• emphasis on practice rather than theory;
• recognition that there are multiple paths in yoga dependent on the spiritual character of the student;
• emphasis on guru;
• no discrimination on the basis of religion, caste, race, sex, or country of origin. Foreigners and women were welcome, which is not the case in orthodox Vedantic yoga;
• the teaching that all things in the cosmos are pure and holy. This means, for example, no strict adherence to dietary or other rules;
• Kriya, Laya (Kundalini) and Swara yoga all taught alongside Raja Yoga;
• emphasis on meditation practices;
• acceptance that the cosmos is made up of dualities, eg body/soul, matter/spirit, shiva/shakti, female/male, and a willingness to work with these;
• the teaching that every person contains the whole cosmos;
• Bhakti yoga including kirtan, ie singing devotional songs;
• mantra and yantra yoga;
• deity practices, chiefly involving goddesses;
• yoga ideal is rajasic (active, passionate) rather than sattvic (passive, saintly), Swami Satyananda being the prime exemplar;
• yoga therapy, that is, yoga for common illnesses and disabilities;
• use of ritual, for example fire ceremonies;
• shared tradition with Tantric Buddhism (Tibetan Vajrayana Buddhism);
• ashram sited in Bihar State, one of the original centres of Tantra.
The Durga Path is a tantric deity practice that was one of Muktanand’s favourite practices. It involves reciting in Sanskrit the “Rosary of the 32 Names” of the goddess Durga. It is found near the end of the Durga Saptasati, subtitled “The Seven Hundred Verses In Praise of She Who Removes All Difficulties”, a text that first appeared in writing in the fourth century AD, about the same time that modern Tantrism developed.
The Durga Saptasati is also known as the Chandi Path, which translates as “She Who Tears Apart Thought”. A large part of the Chandi Path is devoted to a description of the great mythic battle between Durga, the “Empress or Mother of the Universe”, and “the army of thoughts”, which are typically represented in Indian iconography as demons, an excellent example of which I have here in this painting. Muktanand ordered this painting from the Exotic India website just before she died.
Images of Durga slaying a buffalo began to become common in the fourth century AD. The Aryans invaded India between 2000 and 1000 BC. Their religion was Brahmanism, their literature the Vedas, and their social organisation was based on caste, with priests at the top. Their religious practices emphasised ritual, law and animal sacrifice. Their theology was very male-oriented; the few goddesses that appear are basically appendages of their husbands. In short, they were patriarchal.
It appears to have taken Hinduism 2000 or more years to evolve to a situation where goddesses became equal to or more important than gods.
The Catholic Church seems to be working on a similar time scale in relation to the ordination of women.
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Muktanand’s first encounter with the Durga Path was in the Monghyr Ashram. The ashram has a cave where Swami Satyananda often meditated in the early years. Under his direction Muktanand spent about 8 months in silent retreat in the cave, working on a Sanskrit dictionary. Swami Satyananda gave the Durga Path to Muktanand as her personal practice. I believe she started practicing it in the cave.
What would have attracted Muktanand to a goddess, and in particular Durga?
Muktanand was brought up as a Roman Catholic and up until her teens she was very devout. She sometimes joked she became a yogic nun. The Catholic Church is famously patriarchal, but unlike the Protestant denominations they do have a couple of goddess-like figures, in the form of Mary, Jesus’ mother, and Mary Magdalene, his disciple. So Muktanand was at least comfortable with the idea of a woman as a major religious figure and object of devotion.
The mythical story of Durga’s creation gives more clues. The following account comes from the book Hindu Goddesses, by David Kinsley (1987):
“After performing heroic austerities, the buffalo demon Mahisa was granted the boon that he would be invincible to all opponents except a woman. He subsequently defeated the gods in battle and usurped their positions. The gods then assembled and, angry at the thought of Mahisa’s triumph and their apparent inability to do anything about it, emitted their fiery energies. This great mass of light and strength congealed into the body of a beautiful woman, whose splendour spread through the universe. The parts of her body were formed from the male gods. Her face was formed from Siva, her hair from Yama, her arms from Visnu, and so on. Similarly, each of the male deities from whom she had been created gave her a weapon. Siva gave her his trident; Visnu gave her his cakra (a discus-like weapon), Vayu his bow and arrows, and so on. Equipped by the gods and supplied by the god Himalaya with a lion as her vehicle, Durga, the embodied strength of the gods, then roared mightily, causing the earth to shake.”
Some women might say that this is a familiar story: the men make a mess of things and a woman has to be called in to clean it up. Its also interesting to see the parallel with the Christian Adam and Eve story where a woman is created out of the body of a man. But Durga is nothing like Eve. (Nor is she like the Catholic Mary: as far as I know no Indian goddesses are described as virgins!) The story continues:
“Durga then confronts Mahisa, the buffalo demon. Because Durga is unprotected by a male deity, Mahisa assumes that she is helpless, which is the way that women are portrayed in traditional Hindu law books. A long dialogue takes place between Durga and the demon in which Mahisa insists that as a woman the goddess is too delicate to fight, too beautiful for anything but love, and must come under the protection and guidance of a man in order to fulfil her proper proclivities.”
If this sounds a bit familiar, it is worth noting that for many Indians their deities are role models, and the stories that are told about the deities act out relationships between men and women. Kinsley goes on:
“Durga fights Mahisa and defeats him. Typically in Indian art she is shown bringing a blizzard of weapons to bear on the hapless demon, who is half-emerging in his human form from the carcass of his former buffalo form. Durga’s many arms are all in motion, and she is a perfect vision of power in action. Her face, however, is calm and shows no sign of strain. For her this is mere sport and requires no undue exertion. It is a game for her, it is lila,” play.
“The creation of the goddess Durga thus takes place in the context of a cosmic upheaval precipitated by a demon whom the male gods are unable to subdue. She is created because the situation calls for a woman and a superior warrior. In battle after battle she fights against male demons and invariably wins.”
Who are these “demons”? In the Westernised translation of the Chandi Path that I have, the demons are translated as “thoughts”. Some of the thoughts are what you would expect: ‘Hypocrisy’; ‘Fickleness’; ‘Self Conceit’; and the ‘Great Ego’. But others are quite delightful: ‘Want of Resolution’; ‘Wandering To and Fro’, and ‘Devoid of Clear Understanding’.
Durga defeats these thoughts or demons, and in doing so she acts to maintain or restore cosmic harmony and balance. Thus she is a great yogi. This cosmic battle works on a personal level, because in Tantra each person is said to carry the cosmos within themselves. Each person must battle with their internal demons that stand in the way of samadhi, nirvana, enlightenment or just day-to-day calm and tranquillity. Kinsley continues:
“On the battlefield Durga often creates female helpers from herself. The most famous of these are the goddess Kali and a group of ferocious deities known as the Matrkas (mothers), who usually number seven. These goddesses are wild, bloodthirsty, and particularly fierce. Durga does not create male helpers, and she does not fight with male allies.
“In many respects Durga violates the model of a traditional Hindu woman. In that model women are said to be incapable of handling their own affairs and to be socially inconsequential without relationships with men. They are significant primarily as sisters, daughters, the mother of sons and as wives.”
“But Durga is not submissive, she is not subordinated to a male deity, she does not fulfil household duties, and she excels at what is traditionally a male function, fighting in battle. She reverses the normal role for females, and therefore stands outside normal society.”
Durga is different. Most of the other popular Hindu goddesses are closely associated with a male god: Sri Laksmi with Visnu; Parvati with Siva; Sita with Rama; and Radha with Krisna. In her later history Durga is also associated with Siva and in her big annual festival she comes complete with children, also deities. But in her warrior role Kinsley writes: “Durga exists independent from male protection or guidance, and yet is irresistibly powerful.”
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Muktanand was a very capable and academically gifted person who underwent a tough yoga training in the Monghyr ashram for 4 years. After writing a yoga book for women she then established an ashram in Bangalore, South India, the Indian “Silicon Valley”, that continues today. In India she survived encounters with cholera, typhoid fever and a mysterious gut infection that nearly killed her. When she was thrown out of India in 1985 along with every other Commonwealth passport holder, she returned to Australia and completed her Batchelor and Master’s degrees in psychology. She then set up her own yoga school and conducted several yoga teacher-training courses, in Queensland, interstate and overseas. She was an expert communicator and teacher who loved all aspects of yoga and taught from the heart.
She was a great yogi and like many yogis something of an outsider. Her outsider status was made clear to her when she undertook a Certificate 4 Course in Workplace Assessment & Training: a few years ago. The other people on the course were a mixture of Human Resources public service and corporate types, and small business people. Despite the fact that Muktanand was well-dressed and perfectly groomed and made incisive and sensible contributions to workshops, they all thought she was very weird!
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Swami Satyananda once told Muktanand that the Durga Path was a very good practice for a person experiencing great difficulties. During her final illness she incorporated it as part of her daily practice, along with the Medicine Buddha practice.
Muktanand was particularly inspired by Durga’s battle with the demon Raktabija as a metaphor for her battle with cancer. Kinsley describes it as follows:
“In this story Kali is summoned by Durga to help defeat the demon Raktabija. This demon has the ability to reproduce himself instantly whenever a drop of his blood falls to the ground. Having wounded Raktabija with a variety of weapons, Durga and her Matrkas find they have worsened their situation. As Raktabija bleeds more and more profusely from his wounds, the battlefield increasingly becomes filled with Raktabija duplicates. Kali succeeds in defeating the demon by sucking the blood from his body and throwing the countless duplicate Raktabijas into her gaping mouth.”
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The Muktanand Meannjin Memorial Prize is a prize for the graduating yoga teacher who exemplifies some of Muktanand’s qualities – persistence through difficulties, dedication to yoga, and a high standard of yoga teaching.
Before Muktanand went to India she was known as a women’s liberationist. The Sanskrit “Mukta” means liberation and when Muktanand first heard she was going to be given this name, she thought her ashram friends were having fun at her expense. Her favourite translation of her name was “free spirit”. So another one of Muktanand’s qualities is sympathy for feminism.
In choosing the recipient of this prize I have relied very much on information from June. On this occasion there were a couple of very good candidates. The prize goes to Samananda.
Third Muktanand Meannjin Memorial Award
Speech by John E Ransley
Sunday 26 March 2006
Advanced Diploma of Yoga Teaching – Inaugural Graduation Ceremony
Yoga Queensland Pty Ltd
8b Herries Street, Toowoomba, Queensland 4350
Once again, I would like at the outset to thank June very much for inviting me here and also for the idea o a Muktanand award. This is the third occasion the award is being granted. Before presenting the award I would like a give a potted history of Muktanand’s life.
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Muktanand was born into an Irish Australian family in Sydney and brought up as a Catholic. She often joked how this was a good preparation to be a yogic nun. She was academically brilliant from an early age, graduating Dux of her High School and receiving a scholarship to attend Sydney University for a Batchelor of Arts degree.
While at Sydney University she started classes at Michael Volin’s Yoga School, in yoga classes taught by his brother. Michael Volin had been initiated by Swami Satyananda so this was her first indirect contact with her future guru.
She dropped out of university after a couple of years and moved to Toowoomba in 1972. Here she took up the study of yoga in a serious way, commencing classes with June Henry’s Toowoomba School of Yoga. June was another initiate of Swami Satyananda.
In the first half of 1974 she experienced a crisis about the direction of her life. In August 1974 she accompanied June’s ex-husband Karl Jackson to Swami Satyananda’s head ashram in Monghyr, India. She was planning to stay for 6 weeks and proceed thereafter on to England. She stayed in India for 12 years.
Muktanand was initiated as a sannyasin at Guru Poornima in July 1975. She cashed in her plane ticket to England and gave all her possessions to the ashram. During her 4 years in Monghyr, she worked in various capacities in the ashram’s printing department and wrote numerous articles for the ashram’s ‘Yoga’ magazine.
Following publication of her book Nawa Yogini Tantra (Yoga for Women) a group of devotees asked Swami Satyananda to send her to South India. She subsequently moved to Bangalore in late 1978 where she established an ashram that still thrives to this day.
During her 12 years in India she intensively studied the classical yoga and Buddhist texts and devoted herself to teaching and personal practice. She gave yoga programs all over India and took her students on a traditional pilgrimage to the source of the Ganges River.
In accordance with Indian ashram custom she provided counselling on psychological and social problems and yoga therapy for physical diseases. She was sought after as a brilliant speaker on yoga, and was regarded by Swami Satyananda as his ‘best lecturer’ (after him of course).
Following the assassination of Mrs Gandhi in October 1984, the Indian government expelled all Commonwealth passport holders, forcing Muktanand to return to Australia in November 1985.
Muktanand settled in Brisbane in February 1986 and resumed her university studies in psychology, completing bachelor’s and master’s degrees to qualify as a registered psychologist. This enabled her to offer counselling as an adjunct to her yoga teaching.
In 1988 she established the Brisbane Yoga Therapy Centre and commenced teaching yoga classes. Later she gave a number of yoga teacher training courses, including courses in Tasmania and Sweden. She also lectured on yoga philosophy and psychology for Louisa Sear’s teacher training course at Yoga Arts in Byron Bay.
Muktanand was determined to get Australian government recognition of yoga teacher training and worked quite actively towards this goal until she became too ill. She played a major role in the development of a code of ethics for Satyananda yoga teachers and was very pleased when this was finally accepted.
In 1989 Muktanand sat a 10 day Buddhist silent retreat at the Blue Mountains Vipassana Centre. Although she was grateful to find such courses were supported in Australia, she was very disappointed with the Goenka prohibition on yoga practice. She was also disappointed by the suspicious attitude the Centre staff exhibited towards her yoga name. Years later she attended a Vipassana retreat led by Christopher Titmuss and was delighted to find it was much more relaxed.
At Mangrove Mountain in Easter 1995, Muktanand introduced Australia to the extended silent yoga meditation retreat, alternating sitting meditation with dynamic asana and pranayama. Yoga students loved these retreats.
In 1997 she co-taught a Buddhist meditation retreat with Vipassana teacher and Australian Zen Master Subhana Barghazi at Kyogle. Subhana remembers the retreat as a very powerful fusion of the two ancient traditions, Yoga and Buddhism. Subhana still offers Muktanand’s ‘Yogic First Aid for Meditators’ on all her retreats.
Many people remember Muktanand from the 1996 World Yoga Convention in Sydney, where she deployed all abilities to great effect as Master of Ceremonies. Around this time she was officially recognised as a Yoga Acharya, or senior teacher, in the Satyananda tradition.
Muktanand brought a woman’s perspective to yoga, something missing from the classic texts. The great teachers in the tradition never paid much attention to pregnancy, childbirth, menstruation and menopause, which is not surprising as they have until recently all been men! Muktanand believed the particular life experiences of women made them more receptive to yoga than men. Muktanand was utterly convinced these aspects of human experience needed to be incorporated into yoga psychology and yoga teaching: her ‘From Stress to Strength’ tape from the World Yoga Convention is a fine example of the latter. She may even have believed that women made better yogis than men: this might explain why Australian yoga teachers are overwhelmingly women!
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The Muktanand Meannjin Memorial Award was initiated two years ago for the student who exemplifies some of Muktanand’s qualities, including particularly persistence with and dedication to yoga studies despite many difficulties. June assures me that more than one of this year’s graduates has exhibited this wonderful quality, so some other considerations have been taken into account.
This year’s award goes to Ms Lois Wilkinson, who I understand shares Muktanand’s interest in the fusion of yoga and Buddhism, and Muktanand’s focus on meditation.