Friday, April 24, 2015

Are You Listening?

Yesterday, I met with my general practitioner about Hashimoto's Disease. I talk to a lot of medical and health professionals. I have an oncologist, a nurse, and a homeopath in Portland, an acupuncturist, a chiropractor, and an osteopath in Bath, a transplant medical doctor and a nurse in Boston. Those are the regulars. There are others on occasion, but those are the ones I talk to routinely.
I feel like they really get it right with the doctor's office aesthetic, you know?
So anyway, yesterday. My blood pressure tends to run low, as does my body temperature. This is not a good thing, although the opposite symptoms get the most press. What you want is normal. When I had my blood pressure measured at the office yesterday, it was completely normal. This is unusual for me.

When Dr. Fredericks asked me how I was doing, I told her that my blood pressure was surprisingly normal, and that I was feeling really good. I am aware of the dietary triggers for auto-immune disorders, the key ones being dairy products and wheat, and told her that I find that by steering clear of those I avoid most symptoms. I also said that I wondered if the iodine was contributing to normalized blood pressure, as many say it does (or rather that a deficiency, which causes a malfunctioning thyroid among other things, can lead to low blood pressure).

She just listened, respectfully. She didn't act like she already knew all about it, or get that glazed look in her eye that says, "Uh oh, an informed patient, *snort*," or warn me to be careful with supplements, or dismiss my dietary changes as faddish. She said, "It sounds like that is working for you. Maybe that is what you need." Which is what you say to someone, after you listen to them. Why is this so hard for so many doctors to understand?

The situation with my thyroid is that a routine test indicated Hashimoto's Disease, which is a type of auto-immune hypothyroidism. There's no way to know how long I have had this, but we did a thyroid panel in the fall of 2013 and it came back normal. Hormone testing is an inexact science, because hormones fluctuate all the time and normal ranges differ from doctor to doctor. For me, the important part is that I don't have any symptoms of hypothyroidism, such as excessive fatigue or unexplained weight gain; in general I feel quite good. But you don't really care about my thyroid, and that's not main point of this post.

When I got this diagnosis, I did what I always do with new medical information: I started to do research. I searched around the web for primary and secondary sources on the relationship between bone marrow transplant and thyroid, and about thyroid dysfunction in general. I found online communities of people who have had these diagnoses, and read about different experiences with treatment. I pondered the nature of my experiences for keys to why I might have this condition. In this case, it is all pretty straightforward: my body is integrating a donor immune system which is bound to trigger occasional auto-immune response, and I've been brutally poisoned by medication. Because I reject the PANIC AND MEDICATE zeitgest of most conventional allopathic channels, I gently pushed aside the cannon of their initial recommendations to find gentler options as a first resort. Much that I read pointed to diet and a supplement program called Dr. Brownstein's iodine protocol. There are also some intriguing results with Low-Dose Naltrexone therapy.

When I go to Boston, I know how good I look. I know how good I feel. And I know why, in part. There is luck involved; do not mistake my confidence for smugness. A person can do everything right and still be sick. But if a person does everything right and gets better, it is probably worth taking into consideration what they have done. When I go to Boston I try to tell them, sometimes, what I am doing. My skin is clear, my sleep is good. I tell them about what I am eating, what foods make it better and what make it worse, what supplements seem to make a difference. Sometimes I share with them what I am learning about some of the critical mineral deficiencies that many Americans have that contribute to disease, like magnesium and iodine, and why the serum tests we typically use to analyze those levels might not be as meaningful as other tests that people have developed who have made whole careers of understanding the importance of just these few discrete factors. If I get a rash and they give me a drug and the rash disappears, they credit the drug. What about when I get abnormal markers that get better without medication, but with active effort on my part? Should that merit attention?

When I am sleeping beautifully while so many transplant patients are still struggling, when my hair is thick and soft, when I have the energy and the immune system strength despite being on immuno-suppressive drugs to participate fully in my kids' lives and even get a minor cold and be less sick, for a shorter duration, than the immuno-intact people around me, I might suffer the delusion that the doctors would want to know what I am doing that might help other patients. When I read the bulky meta-analysis of the administration of vaccines to post-transplant patients and conclude that there is not sufficient support for the practice in all situations, I could be forgiven for thinking they would be interested.

Alas, Dr. Alyea is not, and I think he is one of the better ones (I think the nurse is more sympathetic, but she has to walk a fine line). He gets that glazed over, slightly defensive, here-we-go-again posture, offers some bromides and some cautions and a little undocumented fear-mongering (I've asked for these documents, but I never see them, so perhaps they are just anecdotes, and OMG WE CAN'T HAVE ANECDOTES!!! Unless they support the doctor's case...).

In short, he doesn't listen. As a result, I don't trust him as much. I am more cautious with his recommendations. I don't feel that we are really a team; I'm pretty confident that he sees himself as my boss, whereas I see him as a paid consultant.

Many times on this blog I have sung my praises of Roger Inhorn, who is the head of oncology at Mercy Hospital. Roger really listens. He listens as if I have something to say that is true about me and my body. He might not think it is true for everyone else, but he will say (as does my GP, and all my nurses), "No one knows your body better than you do." Ted doesn't say this. I am pretty confident he thinks he knows better.

Because of the way Roger listens, and responds ("This has to be something you feel good about doing. If you don't want to do this, I'd like to be your partner in doing something else."), I listen to him. His recommendations carry more weight. When he tells me an anecdote, he tells me it is an anecdote: his clinical observation from years of practice. He doesn't pretend to know anything he doesn't know, and he doesn't dismiss the idea that there are things he does not know that could make him a better doctor.

Having my ideas challenged is a GIFT to me. My ego will always be there to tell me I'm already right, that I already know, that no one can tell me anything. My ego will always be in my way. Maturity of intellect is in being able to separate an idea from my sense of self-worth, in being able to assess new information and arguments and refine my thoughts without being defensive or broken. A tree can sway in the wind and come back stronger, with the same roots in the same spot but a more complex and flexible fiber of being.

Are you listening? Am I?

Thursday, April 16, 2015

What Emerges

I am not going to write a post about spring. No metaphors of emergence and renewal couched in the language of bursting blossoms shall issue from my keyboard. (Julian Jaynes argues that all language is metaphor, which makes this whole thing very difficult, but work with me).

Last week I went to an arcade. I went to an arcade, mini-golf, go-kart fun park, to be exact. It was the middle of a weekday that threatened rain, and was not particularly crowded. At noon, I drove over to a strip mall to eat a bowl of soup. I even had half a glass of wine with dinner (don't tell Dr. Alyea!). I was in South Carolina, where there is much in full flower and...d'oh! Anyway.

I was not wearing gloves. 

I was not wearing a mask.

I was not reading the labels and harassing the staff about every ingredient in the soup.

I was not tired, or wired, or sore, or hungry.

I was...fine. Normal. Totally normal. Normal like other people think of normal.

Last year in mid-April I was planning to begin my transplant conditioning in May. My friend Dave had just died from complications related to leukemia post-transplant. My donor had not yet suffered the injury that would put me through another round of consolidation chemo that would damage my heart and lungs and potentially render me unfit for treatment. The weather was, as now, just starting to get warm, and I was ferociously recovering from my first two rounds of treatment; attempting to gain weight and muscle mass, bolster my liver and kidneys and immune system, find my center, clear my mind.

I was not going to arcades.

Everyone tells you, everyone knows, that life is just a series of moments. It is so very easy to forget that, though. Perhaps some of my decisions seem strange from some perspectives; they are certainly not staid and conservative choices. I plan to live a very, very long time, but every chance I get to do better right now, to be more connected to the people in my life and less concerned with whether it matters that Lysander is eating nothing but hotdogs or Wallace is staying up all night reading Calvin and Hobbes, is a chance I have to take.

My thyroid is acting up, I guess I have Hashimoto's Thyroiditis now; an auto-immune disorder in which the thyroid under-performs and my immune system attacks the gland. When the doctors told me that initially I was very frustrated. I wanted to be on a linear path to complete health. What is complete health, though? Was I completely healthy in my youth, in my twenties, when I didn't have what I have now? I may have been through cancer and ancillary entertainment since then, but my life is so rich, and the terrain of my body is made of wisdom and endurance borne of blood and sweat and tears. I have never been so healthy, so strong, so at home.

Look backwards. Go be in those places in your memory, and enjoy them, and relive them. But don't ever regret the loss of them, for they are still there, and what is happening now is worth living. Find a Go-Kart track.

 (Check out my renewed daily documentation project over at My Time Lapse Life)