Sunday, June 29, 2014

Ten Things Never To Say To Me

There are a lot of lists on the internet. According to my Facebook feed, there are somewhere between seven and ten things I am doing to screw up my child (if I had a daughter the list would be longer). Seven and ten seem to be magic list numbers, because that is also the range of bullet points outlining things happy people do (that I don't), ways I am undermining my fitness program, things I am saying that offend people who have children with disabilities, have suffered a loss, are dealing with a difficult illness, or some other problem that I don't have and might be scared of and therefore might react inappropriately to.

And there it is, in the last clause of that sentence. When we are going through something that scares other people, other people might not know how to react in a way that will feel empathetic and compassionate. Maybe they don't quite want to empathize, because they never want to be there themselves. Maybe they hold a different worldview and find comfort from a different direction than I do. Maybe everyone is different and what magically lifts the weight for one person is a burden beyond measure for another.

My experience with cancer, and treatment, has been an incredible gift. It has made my life simple emotionally, if complex logistically. It has enriched my understanding of relationships, helped me see where and what home is, brought the present into focus. I am not at all sorry to be going through this. It is who I am; it is my path. If I fight that, or resent it, I might as well just stop living right now. Certainly, I don't want to die, and I'll be damn irritated if I do because of all of this, but I'm not planning on it and don't expect it and I'd be really annoyed if I checked out now just because of a fear of checking out later.

That's my process. It isn't everyone's process, though, and that's just fine. So how can I know what to say to someone else who is going through something that might be hard, might be beautiful, might be both, might be neither? I don't. I can say something completely safe, and that's fine, but maybe I'm not big on small talk or safety. Maybe the safe option doesn't feel like the engaged option, and if I am reaching out to someone who might be hurting I want to act like I mean to be there.

Human interaction is important to me. That I need compassion and empathy doesn't negate my responsibility for offering compassion and empathy, and the first person who needs that from me is the first person who is trying to reach me and goes about it the "wrong" way. Mindful speech is important, and it is worth taking mental notes when people make clear what they don't want from an exchange, but what matters to me is intent. I do not want people to say nothing to me for fear of saying the wrong thing. I can take responsibility for my side of the communication.

So I don't have Ten Things Never To Say To Me. I don't even have one. If you mean well, if you want to connect, if the idea of getting leukemia twice and needing a bone marrow transplant scares you and that is part of what you need to communicate when you talk to me about it, by all means, please do. I can't imagine not finding that scary, if I weren't going through it. I don't want people to be correct around me, I want them to be authentic. (I'm not saying there aren't things that drive me nuts; we all have stuff that triggers a reaction. And I do get frustrated when I feel like I've made my reaction to certain things very clear. But I also recognize that some people don't pick up on those signals, and that's part of the process of compassion that I'm always learning).

Now go figure out the seven to ten things you are already doing right with your health, your relationships, and your life. And say whatever you want to me. I'm pretty tough.

Monday, June 23, 2014

Hey! Stop it! Hey! Ow!

I was in the clinic getting a blood transfusion the other day, and there was a woman in the next chair. I could tell by looking at her that she was miserable. I probably would have known without looking at her, and I certainly knew based on everything in her tone and her words. Some people give off that energy, that the world has dealt them a crappy hand and it isn’t fair and there must be someone to blame. And it seems like the easy thing to do when you are dealing with serious illness, to wallow in self-pity.

It’s not. There is nothing heavier than anger and resentment, and there is enough to carry on this journey as it is.

Prior to getting the transplant, I have to have an echocardiogram (ECG) and a pulmonary function test (PFT). Due to the sporting proclivities of my first donor, I have been through this process twice. During the PFT, both pulmonologists told me that all my levels are normal, except my oxygen diffusion. Guess what causes reduced impaired oxygen diffusion? Chemotherapy! So I get to sit with a specialist who tells me I’m broken in some new, special way that I wasn’t broken before, thanks to the treatment.

I am scheduled to admit to Brigham & Women’s Hospital in less than two weeks. On Tuesday, the doctor called. My ECG showed an abnormality; my heart’s ejection fraction (EF) might be too low to safely go through the conditioning chemotherapy. My ECGs were all normal up to this point. Here’s another quiz: what causes reduced EF besides a heart attack? You guessed it, chemotherapy! So, the cardio-toxic drugs they have already given me have damaged my heart, and there was some question of whether I could keep it together to get the pleasure of receiving more cardio-toxic drugs. Fortunately, further tests have indicated that we are in the clear, if on the low side. With some effort, I should be able to improve the EF over time.

Everyone is really nice about it. But there’s no getting around it; they’re hurting me and they’re doing it on purpose.

A couple weeks ago I went for a routine blood draw, and the nurse did a really clumsy job of it. It finally occurred to her to apologize, but it struck me that all these sticks, the ivs and the piccs and blood draws, are the minor routine procedures which bear no special attention; they’re so far down the list that they qualify as nothing. Another time the tech was bouncing off the floor in a caffeinated frenzy, and although that stick wasn’t quite as painful, it was still not perfect. After the fact she told me she hasn’t been drawing blood lately and, as I can tell, some days she’s better than others. Ha ha. The biopsy is supposed to hurt like hell, so that one gets acknowledged, but it doesn’t have any bearing on how many get ordered.

Now, I’m not saying that anyone wants to hurt me, but that doesn’t change the fact that they do, over and over again, intentionally. We are supposed to avoid people and situations that hurt us. What happens to our relationship with the world, and with ourselves, when we a regularly seeking these people out and giving them permission to do it? What happens when everyone tells us, when we tell ourselves, that it’s for our benefit?

I try not to do things the hard way. That’s not to say that I don’t embrace a worthwhile challenge, but I find that when something feels uncomfortable, and that I have to force myself to do it, it ends up not being the right thing for me to do. I’ve watched too many people (including myself at times) choose to be in interactions or situations that make them miserable because they think it is what they are supposed to do. My general rule is that emotional pain is information like any physical pain; it usually means I’m doing something wrong. Identifying that, admitting it, and fixing it are sometimes huge challenges (especially when it comes to relationships, both personal and professional), but ignoring it or pretending it is possible to ignore it are usually worse ideas.

And yet, here I am, doing all sorts of inconvenient and uncomfortable things. There are two options at this point. One is to recognize that I am choosing to be a part of this process; choosing to endure the injuries and indignities of it in the knowledge that the corporeal alone is subject to the suffering. The other is to resent it, to believe myself to be a victim of indifferent or malevolent forces.

I don’t want to carry all that extra weight.

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.