Archive for the ‘advocacy’ Category

“Oh, congratulations on your stem cell transplant!”

April 24th, 2010

I have had cancer for many years (officially diagnosed two months shy of four years ago, but I had it for years before it was finally diagnosed).  So, I know that many people—most people—have no idea what to say to you when they find out or when they see you after you’ve been ill, or whenever. I get it:  No one knows how to react to cancer.  I certainly understand.  But for all the good intentions, it is hard not be be slack-jawed at the things some people say. A couple of days ago it was, “Congrats on your stem cell transplant.” I’ve heard this one a few times before. Congratulations?  Really?

Since the first day after diagnosis, this was the one procedure that I was hoping to avoid.  It is not at all guaranteed to work, and the risks are extreme.  The fact that it ever works at all is quite impressive.  Coaxing someone else’s immune system to play nice inside a completely different body?  I mean, talk about cellular altruism!  These new cells should rip my body to shreds, and they surely would were it not for years of careful research that has revealed which drugs keep the new immune system from doing just that.  Of course, this procedure often fails despite the research, and despite the drugs, and the new immune system does exactly what it normally should do: Identify my body’s cells as foreign and attack.  This is a serious risk, not to mention the very high risk of infections that lingers for at least a year, often longer.  For me, I just flat ran out of other options, and so the choice was undergo this very risky procedure or surely die of cancer.  So, the transplant, despite the data on survival, became the logical choice.  I’m fortunate that my hospital can boast a first-year survival rate of about 90%, but the national average is nowhere near that. People die all the time of stem cell transplants.

Maybe people don’t know this, but they surely know that this procedure is not an award.   I try be tolerant of these comments; I really do.  I know most of the time, people say these things to try to be comforting to me, and usually to try to comfort themselves as well—to give themselves a sense that this horrible disease isn’t so bad after all, so that they can shield themselves from their own fear of getting cancer.  These are all human responses and perfectly understandable, but this disease is horrible, and the treatment is a last resort, and something that I very much had hoped to avoid . . . and it very well may kill me.  That’s the truth, so I don’t think congratulations are in order.

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Some history, and another tough day

April 20th, 2010

As I mention in the About page, this blog is not going to be a diary of pain and suffering. Nor will it be a record of hopeful triumph, courage, bravery, and . . . vomit (well, it probably will be about vomit from time to time. I certainly have been doing enough of that). Yes, sometimes I’ll write as though I’m making a diary entry: what happened to me today, or recounting a past event. I do want the blog to relate those experiences. But I’m also just putting down my thoughts about cancer—those shaped by my training as a biologist and as a person who has cancer. But now, a first of the diary-type entries.

Today was a rough day in a string of rough days.  Immediately after my transplant, I had a typical litany of fairly minor problems: bacteria in my skin causing folliculitis, fungus in my crotch causing me to want to scratch myself to death, no platelets, no red blood cells, and of course no white blood cells.  This is what happens when your bone marrow is destroyed so that another’s can take up root.  So, I wasn’t surprised, and it wasn’t that bad.  The first week I was pretty pleased with how easy it was.

Then came the fatigue.  And I mean fatigue.  As is usual, everyone at the hospital told me, “Oh, yeah, that’s very common” after I was blindsided by it.  But I shouldn’t have been so blindsided; remaking your entire supply of blood cells is pretty heavy lifting.  If I missed a single meal, I thought I would die.  I had no spare energy. Not a bit.  But once I got used to that, all was well.  My new stem cells engrafted very quickly and started making for me a shiny new population of blood cells.  My white blood cells came first, as they do, and my platelets shot up to within normal levels shortly thereafter.  I was feeling great.

Then about a two weeks ago came the change:  Excruciating bowel pain, leg pain, diarrhea, among others.  After a spike in fever, I was admitted to the hospital, and after a blizzard of tests, it was discovered that I had Clostridium difficile.  I had actually been tested for this bacterium the week before, but the results were negative then.

This germ normally lives in our guts, but with all the antibiotics I’d been eating, the bacteriological ecology of my intestines had been altered,  and a new force was on the rise.  I’ve been dealing with the trauma of that force since, and the drugs I’m on are working, but slowly. Those drugs also suppress my new blood cells, so many of my cell lines have fallen dangerously low again.   I’m still having problems with my blood chemistry, because of the diarrhea; I’m still in a lot of pain (though less); and I still can’t eat much, which means I’m tired most of the time.

My nurse told me today, “Endure, endure!”  She sounded like Whitman, and it gave me some strength.

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Why do I have cancer?

April 20th, 2010

I hear people puzzle over this question often.  Oh, not so much about why I have cancer, but why cancer exists.  In a world filled with bizarre, pre-enlightenment notions of “knowledge” that competes for our attention, it’s easy to see why so many would be confused.  Luckily, we know exactly why cancer exists.  It’s no mystery, and it certainly doesn’t require mystical explanation (though I’ve been astonished at how many attribute it to non-material forces).

Cancer happens because change is the fundamental property of living things.  That change can happen in populations, or it can happen in individuals.  Somewhere along the way, probably in the early 2000′s, one of my b-cells—that important component of the immune system that generates those amazing chemicals called antibodies . . . well . . . got changed.  The change was random.  I do not use this word—random—in the unfortunate way so many are today, to mean improbable, which is the precise opposite of its actual meaning.  The change certainly was improbable in that single cell, in my body; such changes, however, are highly probably across populations where cells are changing all the time.  But when I say random, I mean that it was just as likely to occur in the cell that it occurred in as it was to occur in any b-cell, and the change’s occurrence was without direction, without intention.

The details of the change in my b-cell are well known, and in my case they were demonstrated genetically in Manhattan at the time of my formal diagnosis with follicular lymphoma.  Most say something went wrong; I don’t see it that way.  Oh, I’m not one of those infuriating bright-siders who say absurd things like they’re glad they got cancer, or whatever other garbage they have to tell themselves so they can grapple with their mortality.  I just know biology, and life is change. Populations of cells change just as populations of wasps change.  One of my cells changed.  That’s it.  Maybe, it could’ve been an advantageous change, but it wasn’t, at least not for the whole of me (but from the reproductive perspective of the b-cell, it certainly was. . . more on that later).

The relevant behavioral change in that singe b-cell allowed it to reproduce without bound, and so it and its daughters have been busy clogging my body with their bodies—with too much of me.

Some might find this view cold.  Perhaps.  But it is the truth.  I happen to be comforted by the knowledge of the true nature of the natural history of cancer.  As a famous biologist once wrote, “there is grandeur in this view of life.”

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