Lean on me

I really haven't sought out any cancer support groups or networks over the past several months. Perhaps it's just that I prefer to identify as a well person than a sick one. I was happy to raise money for cancer groups pre-diagnosis, but now I just want to fly under the radar and be done with it all.

A very nice, if over-eager, Leukemia & Lymphoma Society lady approached me in the hospital one day, and not to discount the terrific work this group does, but I really had no need for it and tried valiantly to slink away. In particular, she kept pushing me to take the group's money, and I couldn't convey strongly enough to her that I had no need for the cash. My medical costs were fully funded, I was still drawing a full salary and housing allowance, and I couldn't bear the thought that somebody's well-meaning donations were going to a place of little need. I give to groups like this; I shouldn't take.

Out of curiosity the other night, though, I stumbled across a social-networking site for Hodgkins and non-Hodgkins lymphoma survivors. I'd scanned a few cancer blogs early on, before treatment began, because I was uncomfortably unaware of what lay ahead and wanted to steel myself. That was months ago, though. This group had a few interesting sub-section topics: Long-Term Survivors, Lingering Side Effects, and Remission or Relapse? grabbed my attention. I read how several people had lived with (or without) the disease for 5, 10, 20 years, usually after being diagnosed and treated as a teenager.

The Side Effects section was more sobering - survivors described infertility, memory loss, hypothyroidism, weight issues, heart and lung problems, secondary cancers, fibromyalgia - the litany seemed endless. Several posted that they dealt bravely with this horrible quality of life from all the side effects because they were just grateful they weren't dead from the cancer. I felt more than a little guilty, because my lasting side effects (as yet) are so limited and unobtrusive. In fact, in many ways, I feel much, much healthier than I have for a couple of years. I suppose a good chemo prophylaxis does that.

Even reading the Side Effects section, I began to wonder if the sort of people who joined these groups - and, even more so, the sort who would post their personal experiences to an anonymous "support group" of "survivors" - were self-selecting for the worse. I certainly hoped this was the case, once I dove into the ominously named Remission or Relapse?

A precious few proudly stood behind a decade or two of remission; some even declared confidently that their cancer was "completely gone" and they were "cured". But they were in the quiet minority. Many wrote of deflating experiences of finding new lumps, positive PET/CT scans, and repeat chemo, usually accompanied by stem-cell transfers and other more aggressive treatments. There was the unsubstantiated claim that over 80% of relapses occur within 12 months after the first round of treatment, which now I'm intrigued to research.

And then, most uncomforting of all, there was post after post describing the overwhelming anxiety building in advance of PET/CT scans. Scans are a fact of life, a frequent fact, for lymphoma survivors. Every few months (eventually, annually and then maybe once every couple years) for the rest of your life, you take the radioactive glucose and the vein-burning dye so the doctors can scour for any sign of relapse. So be it.

Not for these folks. Most of their posts ran something like this: "About a week before my scan, I start feeling lumps and bumps everywhere. My blood pressure skyrockets and I can't eat anything, I'm so nervous. After the scan is over and I get the results, everything goes back to normal...until the next time.

I just can't get worked up like that. My job, the assignment tug-of-war, now that I'm stressed about. But a scan? Either I'm sick or I'm not - there's nothing I can do about it. And which of you by being anxious can add a single hour to his span of life? If then you are not able to do as small a thing as that, why are you anxious about the rest?