Posts Tagged ‘transplant’

Very tired, and sad

April 27th, 2010

Neuropathy, abdominal pain, diarrhea, nausea, vomiting, narcotics, dehydration, extreme fatigue, and crushing sadness—these are the experiences I’ve been enjoying for the last week.

This has been a hard week—the last few days especially so.  With the ongoing C. difficile infection (which is perhaps fully suppressed now . . . maybe), I’ve been eating nothing but yogurt for more than a week.  Well, I did have a banana two days ago, but the point is I’ve been wiped out.  My protein levels have been low which caused my cells to start to lose their integrity, leaking fluid that was filling my feet like balloons.

I knew that the stem cell transplant would be hard, of course.  But I was naive; I did not anticipate the immense fatigue and my becoming nutritionally deprived.  I’ve never though twice about skipping a meal, or two, or even fasting for an entire day—I’ve done all of these many times.  But this transplant is fundamentally different.  My protein is low; many macro- and micronutrients are very low, such as magnesium and potassium, so I have to take supplements.  I should have anticipated how much energy my body would require to build all of the cells in my blood, a mass that I suspect may amount to two pounds of tissue or more.  I guess people told me I would be tired, but I thought they meant chemo-like tiredness, the kind that comes and then passes a few days after the infusions.  I didn’t get it that I would be completely wiped out for weeks, or months.

I’ve been exhausted most of the time, and unable eat because of the diarrhea, so I get more exhausted, etc.  The neuropathy in my feet and hands means that walking requires the mustering of will and enduring the sensation of walking on hot coals. Showering means filling the tub with cold water so the warm water from the shower doesn’t burn my feet.  I rarely get out of the house, so no sun, no cherry blossoms (which I love).  I’m such a social creature, always needing to chat with colleagues and meet with friends.  Without that, sadness sets in, and sleeping all day because of the exhaustion makes it worse.  I’ve been in a very deep hole for too long.  The last two days, I cried almost continuously.

My lovely partner gently encouraged me to reach out to others on the phone, and that really helped.

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“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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Posted in advocacy, biology, illness journaling, social contract | Comments (0)

Fast forward

April 20th, 2010

So, that last post didn’t actually go up until 31 days post-transplant—that is, today.  The first week post infusion seemed to go fairly well, but matters descended shortly after that, and my heart just hasn’t been in the blog.  I think I’ve mustered my gumption again.  Hopefully posts will be steady at this point.

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April 20th, 2010

Frankenstein is by far my favorite novel.

When I’m not in the bathroom applying ointments containing sodium hydroxide to various parts of my groin to kill the fungus that won’t stop growing, or taking pills to satiate the nausea that pops up from time to time, or trying to get some work done, or sleeping (=what I mostly do these days), I watch TV.  Frankenstein was on earlier—the good one from 1994 that tells the story as Shelley wrote it—a story of a world on the brink of medical miracles, and of the hubris of such thoughts. Every time I read it, I find it more relevant.  As I’ve matured as a biologist, I see more and more genius in it.

Now with cancer, and having just seven days ago undergone a stem cell transplant to completely replace my native immune system—the one that’s been rebelling against me for at least four years—I see another layer to Frankenstein. On its face, it is a book as much about transplantation as reanimation.  Getting living parts from different people to happily co-exist must have been at least as perplexing to Shelley as getting long-dead tissue to come alive again. The latter is taken up by the book, and I am keenly focused on the former.

Stem cell transplants are nothing short of the vision—if small-scale—of Victor Frankenstein.  And, there has been some success with this procedure in the intervening 200 years.  Not so much that you’d run out and get a new, better immune system if yours wasn’t up to snuff, mind you.  These monstrous transplants are saved only for those who have no other options—like me.

So, after years of willingly taking into my body chemicals banned by various war crimes tribunals (that is, chemotherapies of many flavors), I’m left with two options:  Replace a very large, important part of me (all the cells in my blood, including my entire immune system) and hope for alternate ending to Shelley’s great work, or do nothing and have that rogue part of me kill the rest.

With great reluctance, I’ve chosen to take my chances with fire theft.

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