How a woman managed Breast cancer Head-On
3000 days of pain and worry
More than 15 years ago a lady called me up and wanted to know addresses of colleagues of mine, teachers of the AlexanderTechnique and Feldenkrais practitioners in the area of St. Gallen, where, at the time, I was running my practice. Actually, because of life circumstances I lived 3 hours away. So I gladly provided the information, named all my colleagues in the area and hoped to never hear from her again.
For a very simple reason: I didn’t want to leave home as it would have taken me 3 hs of travel to meet her.
Sure enough, a week later I got a call from that lady again and she requested to have a lesson with me. In the past I have learnt my lesson that I better say: “Oh yes, I’d love to” when someone wants to work with me.
So I said “Oh yes, I’d love to, how can we make this work?” and we made an appointment to meet in the days that followed. Actually she was in Switzerland because of the treatment of a health condition that she did not explain to me any further. But she stated that she wanted to have some different kind of support for herself besides the clinical treatment she was undergoing in the Paracelsus Clinic near St. Gallen.
So we met, we worked together, and obviously she was pleased with what we achieved, because she made further appointments during her time in St. Gallen.
via London to San Francisco
Weeks later she left. On her way back from Switzerland she visited a friend, Eugene Cash, a meditation teacher from San Francisco who is in the same meditation tradition as Jon Kabat Zinn.
At the time he was living in London. And as he knew about her health condition, he asked: How is your health? He was concerned that her condition was deteriorating and maintained: You cannot continue the same way, you have to make changes. And with her consent he contacted the University of California San Francisco UCSF CAM-department of complementary and alternative medicine. So she went there, got into the hands of good and good-hearted MDs, namely Dr. Ellen Hughes, MD, Phd, at the Osher Center for Integrative Medicine at UCSF who brought her to one of the leading oncologists of UCSF. The diagnosis was Paget disease of the breast (also known as Paget disease of the nipple and mammary Paget disease), which is a rare type of cancer involving the skin of the nipple and, usually, the darker circle of skin around it, which is called the areola.
The kind but firm recommendation was that the removal of her breast was the necessary next step, as they really wanted to save her life.
She was even offered a place in a cancer research program, where they would make the necessary operation and medical care free of charge for her, as she did not have a health insurance at the time. But she decided to postpone the surgery.
Sorting ideas long distance
She contacted me again and inquired about the possibility of continuing lessons with me even if it were “only” via Skype.
Even though I have never done teaching long distance previously, as she nicely insisted, I decided to explore the possibility. For the next years we continued studying together the Work of F.M. Alexander. I could help her with movement difficulties of her wrist and could help her sort other ideas about movement performance which in turn helped her with issues of overwhelm and confusion in her day-to-day.. She also got more resilient managing contradictory pressures of treatment demands from conventional and alternative medicine. In time we got to know and trust each other a little more. It became clear over time that since 1999, for the past 6 years, she was struggling with mammary cancer, having to decide on the recommended mastectomy i.e. removal of her right breast or finding alternative treatment pathways to save her from removal of her right breast and recover her health. She used our work together for her health, and thus my task became clearer:
to cultivate health coaching and learn much more.
Convinced but not convincing…
Clara confided to me that she had met good doctors and good people, but also others. The reason why she postponed surgery time and again was always the same, and not stubbornness - though I would like to add, I'd have given in some time along the way already when knowledgeable people, experts, talk to me in a convinced way.
Clara Sept. 1999 1st time diagnosed as mammary Paget disease
But that exactly was the point: they were convinced, but not convincing. Clara had always held the position that she would accept surgery as a means, when the doctors could give her a reasonable explanation for removing her breast. And apparently she had a high respect for her body that those doctors did not share in the same way.
Though the pressure for Clara was mounting, as the situation of her health had turned more and more precarious. By now she had developed an advanced stage 3 breast cancer, and she already had lived most of the years since her first diagnosis in 1999 under immense pressure:
In 1999 two of her close friends had also been diagnosed with breast cancer; one chose conventional treatment and died within 12 months in 2000, the other chose an alternative treatment plan and died two years later.
Two additional painful years
Eventually she went back home to where she lived and continued with her daily salt baths (i.e. the daily swims in the ocean) to keep the oozing wound disinfected and support healing as much as she understood while paying tons of money to alternative treatments – to no avail.
She postponed surgery for two additional painful years. On the brink of desperation and close to giving in, a friend mentioned a local doctor, L. M. Graffin MD who had helped her navigate and eventually heal her chronic condition through objectively and systematically analysing her history and symptoms.
For Clara this was a window of opportunity of last resort before she may have given in to surgery.
Clara, Sept. 2005 still diagnosed as mammary Paget disease
Clara contacted me to help her to review her breast history objectively and set up a simple, logical and useful sequence of questions for Dr. Graffin MD to come up with his recommendations.
I was baffled. I stated that I am in no way an expert in these health related matters - I mean cancer for heaven's sake. Both of my parents had died of cancer (and I had fears about it myself) and I frankly did not know whether I would be of great help.
But I was willing to support her and sift through her ideas in this respect and assist her in getting them sorted. As in our lessons, I would be appealing to her reasoning faculties and do what I knew about mindset and shift of focus to waken her latent powers of originality within.
It had been my personal impression, that through studying the Alexander Technique with Dr. Don Weed D.C. I had gotten somewhat more intelligent, a very fuzzy impression but undeniably an impression of mine, and it occurred to me that results in my life reflected that. In other words, I had experienced a transfer of knowledge and understanding from my studies of Mr. Alexander's Work into other areas of my life.
The understanding of sequential thinking (or thinking step-by-step) while keeping an eye out for the hierarchy of importance of the various, dynamic factors contributing to the conditions present, had been a key revelation for me and have played an important role in my understanding of movement ever since. This could also be called the art of asking the best next question – or the best smallest possible next step.
decisions on life and death
So if she was willing to accept the general rules as laid down in my medical disclaimer, willing to slow down the speed of her thinking, so that we can take the time to talk matters over under the light of logic and reasoning, and she'd claim ultimate responsibility for her decisions, then we might have a deal and work together on these lines.
Clara accepted my conditions in full, so we got down to work on her ideas, connected fears and her history (of the breast). The next thing she wanted to do was to go and meet Dr. Graffin to talk matters over with him. But Clara knew that when she was in front of authorities or has to make important and hard decisions she gets highly stressed and acts confused. Thus clarifying and simplifying was most important to make effective next step decisions. In this case, for Clara, it were decisions on life and death.
dealing with “authorities”
So we went over all of the ideas about it, all of her fears connected to the breast and sorted the ideas in a logical sequence. My plan with this was to involve the sincere interest and expertise of Dr. Graffin in Clara’s well being so that the two could come up with a good next step, that made sense to the medically trained expert - and to Clara.
She made the appointment and went to see Dr. Graffin. She was much less of “a deer in the headlight” than she had experienced herself formerly when seeing “authorities”.
Clara May 2007 – the lesion was about 6x10 cm surface area
Subsequently Dr. Graffin recommended Clara to see Dr. Martin Nock MD, M.P.H. a research dermatologist from the University of Houston which is known for its world class research center. So she made an appointment with Dr. Nock to talk matters over him.
In the mean time Clara and me had a couple of more contacts, basically to manage those many ideas going on in her head and assist her to stay as much grounded as possible under these circumstances. That helped Clara to stay grounded shortly before and throughout the coming up meeting with Dr. Nock.
Dr. Nock discussed her history one more time and pointed out that only once in 8 years a biopsy had been made and the results to him were not really clear. He suggested to make a biopsy of the rim of the wound and analyze the cells of that epithelia. She accepted and the excisional biopsy was made and sent to a specialized laboratory for analysis.
Her intuition said yes
The diagnosis that came out of this procedure actually said that the former diagnosis she had lived with for the past 8 years was no longer correct: At least by now it was Bowen’s Disease i.e. squamous cell carcinoma in situ. Dr. Nock's treatment suggestion was then very clear: squamous cell carcinoma is a certain kind of skin cancer and he suggested her to apply an immune modulator cream (Aldara Cream) to the affected area, even though this was an unusual place for its application. Clara’s intuition for the first time said yes.
I was happy to hear that Clara was inclined to follow Dr. Nock’s suggestion, which also made a lot of sense to me. Clara went ahead and applied the topical cream. She were to use Aldara Cream 4 days a week for 6 weeks and started the treatment around 27 June 2007 until 10 August 2007. And it hurt. She had burning sensations every time she applied the cream. But, under the supervision of Dr. Nock, within 6 weeks the condition was arrested. The skin became clear. A
“Miracle”
had happened. In the follow-up meeting of 8 November 2007 the case was closed.
Final notes in Doctor Nock’s report as of 2010
The patient is doing very well.
Excellent scar without evidence of recurrence…
The above story ended 13 years ago. Till today Clara is free from cancer with two healthy breasts. At age 75 she started climbing mountains and continues her downhill skiing. She is more committed to her vitality and health than ever. And she is still going strong.
Clara thinks I have been instumental in getting her through to the other side of these 8 years and encourages me to publish this blog post as she feels others might benefit from her experience as well.
The pictures in this blogpost are private, i.e. under her personal copyright, all rights reserved. You may use them, but only respectfully and in context. Also, while the story is true, names may have been changed to protect privacy.
Thank you for understanding.
