Thursday, December 9, 2010

Roll call for stage IVers

More than 50 people with stage IV melanoma responded to a “roll call” issued recently on a bulletin board hosted by the Melanoma Research Foundation that I frequent. I’ve posted both questions and answers there myself, and have learned a lot about the disease, its myriad manifestations and how people respond to it both medically and psychologically. It’s a useful resource, although the personal dramas that play out there are often sobering and sometime heart-rending.

 It was a 14-year survivor of stage IV melanoma who put out the call a couple of weeks ago. I watched as some of the regulars checked in quickly, followed over the course of several days by others who left messages both rambling and brief, poignant and matter-of-fact, defiant and only rarely defeatist. I posted a short comment myself that included a link to this blog. Interestingly, web traffic to The Ogler during November was more than 1600 pageviews—the busiest month ever. The bulletin board was the main source of this traffic.

An estimated 8000 Americans will die from melanoma this year; all of them will have been stage IV for at least a short time. Others, like “Charlie S,” have been through repeated recurrences and remain very much alive. The 50+ people who responded to the roll call are unrepresentative of stage IVers to the extent that they seem to be “fighters”—feisty and sometimes pugnacious about their cancer survivorship—and social networkers, as evidence by their willingness to post on a public bulletin board. They’re also well enough to think clearly and write in the first place. I’ve observed that people who live a long time with advanced disease are careful not to flaunt their good fortune, but most are not ashamed to tell others about it. The stated purpose for the stage IV roll call was to rally the troops and provide encouragement to those for whom hope has faded.

“One of our many jobs is to show others that in spite of the odds and statistics, people DO live and survive melanoma,” wrote Charlie S.

Amen to that. In parsing the varied responses to his roll call, I detected a few interesting patterns:

  1.  Many mentioned having participated in clinical trials, including several who are currently taking ipilimumab (a promising new immunotherapy drug). Some of them are responders and pretty damn glad for it.
  2. There was very little mention of subcutaneous metastases, which are what qualified me for stage IV early this year. I’d like to find some people with a disease course similar to mine, but they didn’t show up among this group.
  3. Most stage IVers on the roll call have been either newly staged or have been there a long time—at least three years, Of those who have exceeded the survival odds (less than 10 months), none have done it without repeated surgeries and/or drug therapies. A couple people listed a breathtaking assortment of treatments; one woman has had 10 rounds of the chemo drug Temodar. No one expressed regret for having to endure sometimes brutal regimens.
  4.  I detected almost no self-pity in what I read. The arbitrariness of melanoma and its progression was acknowledged in several different ways, however, as was sadness over those who previously participated on the bulletin board but have died from the disease.
  5.  There were several touching comments, including this one from “NancyGM”: “This disease can cause a lot of misery but cannot steal those sparkling moments when I am busy living to the point of tears.” What a beautiful expression. Many people expressed gratitude for their continued life, while others simply praised the name of God.
There are certainly other clubs to which I’d rather belong, but we don’t always get to choose the company we keep. In light of what the people on this bulletin board have in common, the responses to the roll call were more genuine and illuminating than most things to be read online. I don’t feel any better about where I stand vis-a-vis melanoma, given my relatively privileged health status and the dire histories of others with stage IV disease, but I do believe that to be forewarned is to be forearmed. I appreciate what others have shared, and I pray collectively for their health and well-being.

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