The Ritual of Treatment

A friend shared this article on Facebook today, and I had some comments I wanted to make about it but didn't want to get into on Facebook. The article is here, but I'm going to cut and paste it into this entry since links don't last forever.

June 30, 2009 Losing a Comforting Ritual: Treatment By DANA JENNINGS

For those who have never been seriously ill, treatment often seems cut and dried. You get sick, you get treated and, in theory, you get better. One day you’re a patient, the next you’re not. Simple, right?

Well, sometimes it’s more complicated than that. As I was being treated for an aggressive prostate cancer this past year — surgery, hormone therapy, radiation — I experienced an unexpected side effect: post-treatment letdown. It tended to arrive right as a cycle of treatment was ending. It snuggled up against its old friend uncertainty and whimpered, “So, what’s next?”

None of us want to be sick, be obliged to take our medicine. But we are also creatures who love habit and ritual, and medical treatment is a very structured exercise that plays to that craving. When I had radiation for about two months last winter, it began to feel as familiar as a job. I knew the names of the hospital parking attendants and the receptionists. The nurses, doctors and therapists all smiled and said hello, and I did the same.

Each day I arrived at radiation oncology, checked in, got my hospital bracelet, changed into a drafty gown, then waited with my fellow patients — my colleagues in cancer — to be treated. Once a week, my weight, blood pressure and temperature were taken and I met with my radiation oncologist. I had become a regular at the radiation spa, had even learned to artfully jiggle the key in the stubborn locker doors. Then it was over.

Which is a good thing. But even though it was a relief to be done with the radiation, it still felt like getting fired or laid off. For two months I was the subject of intense attention by the medical staff. And there was the professional yet intimate laying on of hands each day as I was positioned just so in the TomoTherapy machine.

For 33 sessions, it seemed then, radiation oncology and I were infatuated with each other. But as I got dressed after that last session and then made my final goodbyes, suddenly we were “just friends.” And there was no shortage of patients to take my place.

We patients know that not having treatment is a sign of progress. But sometimes having treatment, doing something, is easier than the uncertainty, than the waiting. It’s like being stuck in a traffic jam and taking the first exit that comes up just to keep moving. When treatment ends, it’s just you and your mutinous body warily thrown back on each other.

I noticed a similar letdown when I returned to work late last summer after my radical open prostatectomy in July. For seven weeks, my only goal was to recover from surgery. My days were measured in naps and in languid laps around the block, in Percocets and the draining of my catheter. The world’s worries were not my worries. If I couldn’t see it out my bedroom window, it didn’t concern me.

And because I was recovering from cancer surgery, and because I already knew that I would need additional treatment once I healed from the operation, I reveled in the most minute of details: the black pads of my dog’s feet as smooth as a baseball glove, the wet-cellar smell of a vintage science fiction paperback, fireflies winking and waning at dusk.

Pierced by a keen sense of my own mortality, I was much more interested in discerning the small miracles embedded in each moment than I was in catching the 9:03 Midtown Direct to Penn Station. And there was a part of me that was disappointed when the time came to once again catch that city-bound train.

Don’t get me wrong. I was glad I felt well enough to return to work, glad that I felt strong enough to navigate the hurly-burly of New York City. But in returning to work, I was also trading in a certain depth of perception. Cancer and surgery had slowed me down, made me look and listen, smell and touch with the eagerness of an explorer entering uncharted territory. Midtown Manhattan doesn’t quite encourage that kind of dawdling. These days — four months out from my last hormone treatment and five months from my last radiation session — I don’t feel so much let down anymore as a bit confused about how to refer to the status of my health.

I am still a cancer patient, still being monitored. I might even still have cancer, but then again I might not. One day I’m a patient, and maybe the next I’m not. And on that day, I guarantee you, I won’t feel let down at all.

Dana Jennings is a reporter and editor at The New York Times. His postings on coping with prostate cancer appear each week at nytimes.com/well.

This article really spoke to me because of something that happened very recently. Well, a few things. I'm not a cancer patient, but I've had a number of chronic illnesses that keep flaring up. Or new variations. Like my continual need for physical therapy of some sort. I've developed quite the relationship with my physical therapist. It's amazing how you can pay someone to torture you like that, and yet still smile when you see them. I know everyone there, and they're familiar faces. I'm going right now for my plantar fasciitis (first time I've been there in about 18 months), and we're doing essentially the same thing we did last time for the other foot/leg. So I know the drill. I know he will hurt me, but he always makes me laugh - he has gotten to know me well enough to know just what to say to get me laughing so I won't notice the pain as much. He's the best physical therapist I've ever had. I love that he gets results. But when it's over, I feel this sense of grief. Gratitude that I'm better, yes, but I miss him. I miss the staff. I miss the familiarity of the routine of going there. Sometimes I'll run into him at the coffee shop in the lobby (we're in the same building) and we'll chat, but it's not the same. I miss him. So when I had to start going there last week, it was with an odd combination of dread (that my pain had gotten to the point where I had to do this) and yet excitement at seeing him again. I never really thought about this until reading this article, and now it makes perfect sense! The other thought is how last month I was taking a course in Health Kinesiology (HK) which is an alternative modality where we balance the energy system when things stress it, keeping our bodies from healing naturally. One of the corrections we learned is called "Being/Not Being." To explain it simply, it's essentially when something stresses us from being X and also not being X. For instance, if you were working on Being Angry and Not Being Angry, both of those states are stressing you out energetically - because you really need to be one or the other, and if both stress you out, you don't have many options. So I was the guinea pig on the table with the teacher for teaching this correction to the class. We use muscle testing to get the appropriate word that the body needs, and word that came up for me was "hypochondria" which means we were working with Being Hypochondria and Not Being Hypochondria. ("HK English" isn't always very grammatically correct, FYI). The class looked very confused by this phrase, but we did the correction for it. Then the teacher asked if the phrase meant anything to me, because it didn't mean anything to her either. I smiled because it made perfect sense, and for much the same reason as why this article touched me. For a very long time I've had this unintended identity as a handicapped/disabled/sick/injured person. I've got a handicapped permit. I've spent many months out of work over the years on disability. There always seems to be "something" going on with me. It becomes comfortable. And there are certain benefits to it. I get close parking spots. I can make people get up on the bus if I chose to so I can have a seat. I've had weeks at a time off work. People dote on me. While you don't want to be sick, who really doesn't want to be cared for? Have breakfast brought to them in bed? Have someone say "you poor thing" and do stuff for you? I'm independent and on some level I don't want that, but there are other parts of me that really does like it. I'll admit it. But at the same time, I hate it. I hate having things wrong with me, and I sometimes wonder if these things keep coming up because I expect them to. It's almost like I've lost faith in my own abilities to do certain things or stay healthy. Some people have inferred that I'm being a hypochondriac about my illnesses. Sometimes I feel like it as well. So is it any wonder that this "Being Hypochondria" and "Not Being Hypochondria" resonated with me and is stressing me out energetically? I guess I need to remind myself that while yes, there can be some odd benefits to being ill, there are far more benefits to being well. I want to be that well person, and I want that to be my identity. It's a much nicer way to live, I think. And I'd rather people dote on me because they care about me, not because they feel sorry for me. :)