Thursday, June 12, 2014

That Elusive Path

"Some day, they'll be sorry for what they did to us. But right now, it's all we have," said a friend who lives with an illness that is often debilitating and only partly treatable.

Sometimes we choose to do things that are hard. We choose because it seems like the only real option, or because it feels like the best means to the end, but that doesn't make it any easier.

It seems trendy to discuss cognitive dissonance these days, as a problem that other people have since they can't seem to see the obvious wisdom of the viewpoint I have embraced. Certainly, we get emotionally attached to ideas, especially ones we have worked hard on hashing out, and we don't like to give them up lightly. To my mind, though, all this talk of cognitive dissonance assumes that there is tons of incontrovertible truth out there and it is just a question of lining it all up and drawing the clear conclusions. My experience in life hasn't been that way. It seems to me that sometimes the gods that are sparring are equally powerful.

Cancer is a bit of a battleground in the warring worlds of different medical modalities. There is the allopathic model, which treats the body as a sum of discrete parts where sick bits can be sprayed with gunfire, and everyone can hope there isn't too much collateral damage. Types of ammunition can be compared through random control tests (RCT), where all the potential confounding factors can be accounted for and eliminated. It is a world where one can assemble a cohort of physiologically identical-enough individuals to produce meaningful outcomes. And there must be something to it, because survival rates have improved since the advent of modern allopathic treatments. Survival statistics for acute myeloid leukemia in the 15-34 age bracket has seen an increase of over 30 percentage points in the past 30 years, for example. Still, the treatments are dangerous and difficult. When I think of the people I know who have died after a cancer diagnosis, they have all died from the treatment more than from the disease. Chemo causes cancer, and it kills.

At least we have some statistics, though, for chemotherapy, radiation and surgery. When one attempts to determine the success of other types of cancer treatment, there are no numbers. You can find testimonials, and even clinical reports, of cancers cured by non-allopathic methods, and I believe these stories, but there are no numbers. There is no way to compare the mainstream treatment options with the alternatives.
But allopathic medicine takes no account of the factors it can't measure (and it shouldn't; that would compromise the quality of the type of data medical research produces). Yet we know that emotional experiences, in your own or your ancestors' pasts, can influence gene expression. There's the intriguing if controversial work of Dr. Emoto on whether water molecules respond to emotional energy. Dr. Prasanta Banerji in India is documenting the success of treating life-threatening cancers with homeopathy. Homeopathy, Reiki, aspects of chiropractic, acupuncture, qi-gong, yoga, and other modalities focus on the role that energy flow within the body can affect healing. Then there are the powerful medicinal effects of plant medicines, much of which is derived from ancient indigenous healing traditions: essiac, chaga (betulinic acid is the active component in chaga), cannabis, cucurmin, to name a few. There are individuals for whom religious belief is sufficiently profound that prayer can heal.

Modern medical science is excellent at describing the processes and the biochemical landscape of the body during disease, but it still has no real answers for why diseases like cancer strike some people and not others, or why they recur. I have NO known risk factors for leukemia, and during the time between initial remission and relapse my lifestyle was even healthier, if possible, than before. So why am I sick? Doctors don't know.

On the other hand, while the oncologists can guarantee me unpleasantness and they can't guarantee the success of my treatment, they seem to have the most concrete positive-outcome data available. I am not a slave to the RCT; I recognize that it has major limitations in assessing the validity of energetic modalities, but I do know people whose cancers have been cured by conventional treatment, whereas I don't know anyone who has successfully treated cancer without it. On the other hand, I also know people who have died as a result of chemotherapy and radiation.

When the doctors told me I didn't have a donor anymore, and that they were looking at partial match donors, I decided to assume that this was the right situation for me. If there was no perfect match, I would not do a transplant, and I would pursue another form of therapy instead. Then, when I had started to develop a plan of action for that approach, they called and told me I did have a donor. So was that now the best path for me to follow? I can't afford to be completely passive in this process; I have to be ready for what I'm about to do; fully committed to embracing any suffering that comes with it as part of the best means to the the best outcome.

The truth is, I do believe there is more to medicine than drugs. I do believe that cancer is a symptom of something going wrong with the body, and that there must be better ways to reprogram that error code than the scorched earth of conventional cancer treatment. But I was raised in a western tradition that accepts the statistical outcomes of scientific experimentation as meaningful, that considers germ theory valid (although I also believe that terrain is tremendously important and a still-undervalued component of healing), and that finds no certainty in faith.

The treatment that is most culturally resonant for me, the one that is going to be easiest for me to fall into and turn off the analytical processes in my head (which I don't think are helpful for healing), is going to be one that spans a number of modalities. I need to have a stem cell transplant. I also need to manage my recovery and relapse risk with the powerful agents of homeopathic, herbal and nutritional traditions. Not as a complement, or as a head-patting nod to my psychological process, but as an integral part of why this is going to work for me. Until the doctors know why one person gets sick and another doesn't, they need to open their minds a little more.

I think that oncology would be much more successful if doctors learned more about the needs of the human body; if treatment weren't a finger-crossing reliance on the miracle of the agent to endure but rather a carefully considered understanding of what nutrition is and why it can't be boiled down to a bunch of electrolytes coming through a tube. Doctors need to understand why medications that destroy eating and sex are taking away life, and why that needs some special attention besides an assurance that it's worth it. Of all the people who hurt me, who stick needles in me and prescribe horrible drugs, not one of them has experienced what I am going through, and that's hard; it's a pretty powerless feeling. A doctor that can't recognize that a patient is going to know she needs things during the process that he doesn't understand is not a doctor who is treating a person, it is a doctor who is a treating an entry in his research log.

My problem is that I think too hard; I plan too much. Healthy, for me, is letting go of that control, but I have to do the work and struggle of figuring out what and whom I can trust enough to take over. I know I can do this because I know what MY path is, but it hasn't been an easy path to find.

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