Getting it wrong before getting it right - case study #1

(NB: The personal details of the people in all case studies have been changed to protect their identity.)

Mileni came to us with acute myelogenous leukemia. She had no family here, no husband, no children, only a solicitous group of concerned friends who were quite prepared to help her get through chemo. But Mileni didn't want chemo. She looked at her odds, and having been told by her oncologist that she would need the absolutely most aggressive kind of chemo possible and would likely end up intubated in intensive care for weeks on end, she decided that the odds were not worth it (the 5-year survival rate for her cancer with chemo was 10%, but without chemo, 0%). She was fatalistic: she was willing to try what we did and if it didn't work, she would settle for death with dignity.

Full of confidence after our first seminar with Bill, we decided to treat Mileni. Bill had told us that aggressive cancers remitted quickly, and as acute myelogenous leukemia is one of the most aggressive kinds, we were secretly hopeful for Mileni's speedy recovery. We told her that the treatment was experimental and that because we could not guarantee results we could not accept payment. At first there were three of us treating her, but then it became just me. She received treatment first once a week, then twice a week, then three times a week. In spite of this her blood count continued to worsen, although the treatments seemed to slow her deterioration. About three months after her treatment began, however, her doctor announced that her white blood cell count was now "gravely concerning". This meant that she could at any moment develop a fatal brain haemorrhage. When she left his consulting room to use the bathroom, he made baleful eyes at me and told me that "leukemia patients die in horrible ways". He wanted me to convince her to agree to have chemo.

By this time Mileni had stopped talking to her friends because of their solicitous insistence that they would help her through chemo. She would not hear of it. The very mention of the word "chemo" made her angry and anger made her condition noticeably worse. I did the only thing I could think of: I took her to see Bill, who graciously agreed to see us. After a few days of treatments from Bill she seemed to perk up, and could even be seen doing the occasional pirouette on the lawn. But upon her return home she crashed, and her white blood cell count sky-rocketed. The numbers went from "gravely concerning" to astronomical ("astronomical" was almost five times "gravely concerning"). The numbers would now only rise, we were told, and the white blood cells would spill over into her lymph nodes and her brain. She had bruises because her platelet count was low and a constant fever. I was treating her daily but with little hope.

Then suddenly something happened. One day during treatment I felt something different accompanied by a sudden sense that I had just "got it". And sure enough, the next time Mileni went for her blood test, the white blood cell count was down. Her doctor said it was a lab error. There was another blip up the time after, but then the count decidedly reversed. She was having two bloodtests a week, and with each one the number would go down 15 to 20 per cent. People at the hospital who did not know her history would ask her what kind of chemotherapy she was on, because her body was behaving as if she had been receiving chemo. But unfortunately along with the white blood cells her red blood cells and platelets were also falling. She began receiving transfusions, which only worked for a while, as her body began to react to the blood as if it were a foreign substance. It became a race against time. I had the idea that if all the bad white blood cells were to go, her body would start manufacturing healthy blood cells -- just as with chemo. Mileni by this point had settled for death with dignity but allowed me to have my delusions, and to keep treating her, so long as I kept her company.

When the final crash came I went with her to emergency, where a young doctor shouted at her, as if she were hard of hearing, that she needed to contact her family because she was dying. He helpfully assured her that she would not survive the weekend. But survive she did, with hours of treatment, and then my next act as her healer was to negotiate with the social worker to have her transferred into palliative care. I continued to treat her and I continued to remain hopeful. Surely a miracle would happen and Mileni would walk out of the hospital on her own two feet. On her last day I sat with her until 11 p.m. She died peacefully in her sleep at 2 a.m. Her last blood test the day before showed her white blood cell count as "normal".

Discussion

I was devastated by Mileni's death. I had clearly become too involved with her in the course of her treatment, but I do not know at what point it would have been possible for me to walk away and still be at peace with my conscience. Some people comforted me by saying that I had done something beautiful by sticking with Mileni to the end, and that even though I hadn't cured her, important healing had taken place. There was a big debate in our group about the value of "healing" versus "curing" with the conclusion that without healing no curing could take place. A number of the group who think beyond matters of the body in this life felt that in cosmic terms healing the whole being was far more important than curing the physical body.

From the perspective of practicing Bill's technique my over-involvement with Mileni was not a good thing. It is an important part of the technique for the practitioner to be detached from the outcome. If you care too much, you get in the way. Also, it is not a good idea to treat someone who desires death with dignity. The best candidates for Bill's technique are people who passionately want to live. I think Mileni wanted someone with her who would not pressure her into treatment. I was chiefly there to hold her hand and to ease the process of her dying. It's not what I wanted to happen. The lesson Mileni taught was "it's not about what you want." I am still not sure how well I learned it.