Balancing Act

I had, for a short while, an oncologist with whom I got along famously. Sadly and too soon, I had to say goodbye to him as he elected to go do good works in the Middle East. So I was celebratory when I learned that he had returned.

What makes him such a great oncologist, in my opinion anyway, is his willingness to listen carefully to his patients, and fully discuss and explain his thinking and ideas for strategy. As a VA patient, I’ve run into doctors who didn’t even bother to read my file, and wrote treatment recommendations even before meeting me. To them I was just a name suffering Multiple Myeloma, and they had just what I needed in their one-tool toolbox.

As time has gone by, it has had its healing effect and now permits me to look objectively at my history and identify many of the things which caused things to go so terribly wrong for me. Some of it was pure chance, like my sensitivity to some of the medicament used in therapy. Additionally, I seem to develop side effects more severely and more widely than the vast majority of people. Add to this that I’m in the 1% of Multiple Myeloma victims who are non-secretors, and you have the perfect example of someone who cannot be wedged into a treatment category.

But another problem has been the partisan-like approaches to treatment that many professionals take. Much like I experienced, there are those oncologists who say immediately that I need to take high dose chemotherapy and then a stem cell transplant, followed by maintenance doses of combination therapy. It’s frustrating to be the recipient of their anger when it’s pointed out that I can’t take steroids; this eliminates not only their pre and post transplant therapies but the transplant as well. For a time I wrote this reaction off to ego, believing them embarrassed by their oversight and the blow to their ego it caused. But I have come to realize that it’s a similar frustration to what a Jehovah’s Witness feels when they fail to convert a Catholic. Or perhaps a liberal trying to get a conservative to believe government has a social imperative. Whether religion, politics or medicine, there are partisan camps dedicated to certain ideas and to challenge them shakes these people to the core.

But atop it all was my own part in damaging the process of finding an appropriate regimen for me. Initially I had whole hearted faith that whatever doctor I was presented to would be a savior. When things didn’t go as intended, I became disillusioned and mistrustful of the medical system at large, and the VA health care system in particular. Both of those far poles were wrong for a number of reasons; on one hand I offered no help to my doctors in my belief of their omnipotence. On the other, I failed to help my doctors in my disbelief in their competence.

Be it either the professionals of myself, there was little to no balance applied to a process of determining an appropriate treatment program for me. A Valentine’s Day article in the Myeloma Beacon by Dr. Arnie Goodman spoke rather eloquently to the concept of balance. You can read it here. I wrote a comment on the article in which I introduced a term I’d coined for myself and have been using in conversations: “Bandwagon Therapy.”

My meaning is to reduce the ideas of partisan thinking about patients needs and therapies into an easy handle. Probably a mistake, because unless someone has heard my full definition of the expression, they could easily mistake it as just another of the clique-like camps of thinking, rather than the stop-look-listen caution it’s meant to be. The position I advocate is no position at all, believing that each patient should be treated as an individual rather than a part of a category.

It disturbs me to see articles written by noteworthy Illuminati of the Multiple Myeloma field which advocates any treatment regiment. I think all writing should be cautiously penned so that they explain new treatments and perhaps provide some criteria as to what sorts of cases might benefit from them. There are way too many writings which talk about how this or that therapy shows great potential for all or some larger group classification of patients. My wonderful wife is always talking of how she seeks balance in her life, looking to moderate all aspects of it from what she eats to what she thinks. I have come to see her perspective –insofar as treatment for Multiple Myeloma.

It is this very way of thinking, or quality of character, that makes me appreciate the return of my Caesar, my errant oncologist who went to ply his trade in a combat theater. Yet I have learned not to sit back and bask in my wondrous belief in his competence, but instead to work with it. So far we both remain perplexed about what to do. So the plan is still to do the best possible to keep me comfortable while continuing the search more ideas that fit my situation. In a strange turn, I have heard a few people opine that I have made a choice to die because I’m not actively trying literally anything to halt the cancer. That’s not true. I happen to want as much life as I can get, so long as I can actually appreciate the gift.

Which leads me to a position in which I am inflexible; it is not life itself that’s important; life doesn’t mean much without there being a quality to it. An unlivable life is no life at all in my book, and there are those with conviction that this is sacrilege. I do note though, that those who’ve suggested fallacy in my own convictions have never experienced pain that caused them to scream as relentlessly as the pain agonized them. I also note the same of the doctors who were so certain of their methodologies. Perhaps that’s why I have the respect for Dr. Goodman that I do; he too is a Multiple Myeloma victim, which I believe gives him a more credible position from which to speak. My current oncologist is not a victim as well, but quite attractively he thinks like one, revealing that the cancer has hit close to home in family.

Regardless of how it might be achieved, a balanced approach to custom individual therapy is, I think, the best approach of all.