Saturday, April 11, 2009

Multiple Myeloma Treatment -- Saying Emphatic 'NO' to a Double Bone Marrow Transplant

One thing I do know is that doctors don't know everything. A good doctor will admit this. Some doctors like to think they do know everything, including what will happen to you if you do this or that, or don't do this or that. And yet, they cannot predict the outcome of a particular treatment for a disease, or specify a prognosis for an individual other than statistically.

So when the doctors in Arkansas at the Myeloma Institute for Research and Therapy recommended last May that I undergo a double bone marrow transplant, I asked why. They told me the only way I would be cured was if I got a double bone marrow transplant. And yet, on further questioning, it turned out that not all patients who underwent the double bone marrow transplant that they specialize in was actually cured. I did ask what the mortality rate for the transplant was, and I was told by the doctor that is was 1%. But when I went home to read the literature they provided, I learned that I hadn't been told the whole story.

Yes, the mortality rate for the bone marrow transplant is 1%, if one is talking only about that piece of the procedure. But the overall procedure includes first killing all of the bone marrow with heavy duty chemo, and the mortality rate for that was given as 4%. Then 1% for the transplant. And then they did the procedure again, with chemo, for which there was a 3% mortality on the second try (for the people who got that far). So given all of these percentages (based on 2005 data), the overall mortality rate for the double bone marrow transplant procedure is 8%.

So then I asked the doctor, "Why would I elect a procedure that would have a 1 in 12 chance of killing me, especially when there is no guarantee of a cure?" The doctor answered by telling me that the statistics are much better now, 3 years later, with an overall mortality from the procedure of 3% rather than the 8% quoted in the literature. And I still say -- "OK, with a procedure that has a 1 in 33 chance of killing me, why would I elect to do it?"

There are no guarantees in life, except that life will end. We like to think that we are immortal, and doctors like to think that they have the power to give life, but they are not in charge. They are certainly not in charge of me.

Part of learning whether a double bone marrow transplant is truly helpful to patients should involve following a sample of people who elect the procedure, and comparing them with a sample of people who do not. But when my mother asked the question, "What about the people who did not have the double bone marrow transplant -- how long did they live?", the doctor answered that there was no current data on these people. While the doctors could show that people who survived the double bone marrow transplant would live longer than myeloma patients used to live without the transplant, the doctors couldn't tell me how patients fare these days with newer treatments other than the bone marrow transplant.

In my own oncologist's words, a double bone marrow transplant is overkill. "If you survive the procedure, you will live longer." And I say, "Longer than what?" Certainly longer than if I were to die from the procedure. It's not like I can clone myself and find out what would happen if I do this, or what would happen if I do that. I must choose a course that I am comfortable with. Not the course that a particular doctor wants, because a doctor does not have to live with the consequences of my choice. I do. And I was told that it would take about 6 months for the overall double bone marrow transplant procedure, and then about 1 year for the body to recover. For the people who live through it.

And right now, at this time in my life, I choose quality of life in the present moment. I am face to face with my mortality. I know I will not live forever. None of us know what will claim our life, or when our last breath will be. Just that it will be.

And I will forgo the chemicals and creating a battle ground inside my body. For I choose to live in peace. Loving all of myself. Accepting that which I face. Not being afraid of it, or of what life has to offer. And I have never been so happy, so clear, so at peace and at ease with my life and my choices as I am now. For I know that I am always at choice to make a new choice, for I am the one who is creating my life.

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