Posts Tagged ‘emotions’

She’s with Ehrenreich

June 10th, 2010

My good friend, Johanna Wilson, recently posted a comment to my last blog.  I find it so compelling that I’ve deleted the comment and reproduced it here in its entirety.  It is honest, humble (perhaps a bit too self-deprecating, though), and I think quite representative of the way people with cancer feel—and a strong denunciation of the popular view of how we feel.  This deserves front-and-center attention:

I’m with Ms. Ehrenreich in many of her objections to our society’s popular perspective of cancer.  Most of the “cancer people” I’ve spoken with don’t like the term “survivor.”  In my childish frame of reference, I survived chemo, not necessarily cancer. (It was the cancer that failed to survive the chemo!)  It seems to me that survivors are people who withstand a terrific onslaught because of something they did to promote their survival.  If you live through a catastrophic event as a passive observer, you just got lucky.

I also jump on the bandwagon of folks who object to the militarization of commentary on cancer: “battle,” “struggle,” “war.”  I don’t remember any battles or war.  I just remember treatment.  Likewise, terms like “brave” and “determined” didn’t apply to me.  All I did was have treatment.  My medical team and my caregiver put forth all the effort.  I just “took it.”  I certainly never wondered why more hadn’t been done in cancer research (speaking of Ms. Ehrenreich on that last point there).  I felt lucky to live in a society that could provide treatment, and I was lucky to be able to access it. (I know you share that appreciation.)

I may lack an important personality trait that promotes the survival of the species, but I just never felt any anger or sadness about having cancer. (A feeling of loss of control right there at the first, but that passed.)  Fortunately, I never wondered, “Why me?” (I’m always tempted to ask, “Who would you nominate as your replacement, then?”)  The cancer didn’t pick me. I may have actually contributed to its development with some lifestyle choices:  Poor diet, lack of exercise, stressful response to work, etc.  No one to blame except possibly myself.

What I did experience in my own cancer journey was an outpouring of friendship and caring, including the way out of the way side trip you and Greg took to visit me!  I am confirmed in the absolute knowledge that hair and boobs and fingernails are so overrated. (Well, fingernails and toenails are nice, but they’re not part of my identity.) For a brief time, my concerns were bigger than the petty irritations of daily life. (I’ve forgotten most of that lesson. Marty says I’ll have to repeat the exercise.)  Mind you, I’m quite aware that my journey and treatment pale in comparison with yours, but for me, it was a difficult time, but not a negative time. It just was . . . only bigger.  I’m not sure it’s any more appropriate to react emotionally to cancer than it is to an “angry sea” or a “merciless desert sun.”

That’s my story and I’m stickin’ to it! Let the games begin!

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Faith in a seed

May 15th, 2010

Today, Greg and I (masked and gloved) went to Walden Pond for a second visit, this time with our dear friends Alison and John.  We hiked the trails for a few hours.  There was life all around us—trees, insects, birds, and mammals were obvious everywhere we walked.  Walking with my loved ones, I thought of Thoreau.  Thoreau saw majesty in the smallest creatures.  As he famously wrote in Walking:  ”In wilderness is the preservation of the world.”  So much of my existence lately has been about killing bacteria, and killing viruses, and killing cells, and killing . . . and fear of death. Today was only about life, and living.  I needed today.

After Walden, we went into Concord and walked around, saw the beautiful Concord Library, Sleepy Hollow graveyard, and other historical landmarks.  It felt great to get out, especially at Walden and in Concord, where so much important American history took place—and where the words that would change my life and influence me to want to become a biologist and activist were written.

Were it not for Thoreau, and Emerson, and Alcott, and (to a lesser extent) Hawthorne—but especially Throreau—I might not have become a biologist, and so might well not be in a position to understand what is happening to me right now—my stem cell transplant.  I might not have become an activist, and so might not have the spirit to confront and challenge my physicians when needed. I can say honestly and with no hyperbole:  These qualities—a love and knowledge of Nature, and a rebellious bent—have been utterly essential to my survival since diagnosis.

So, today reminded me of my past, but also gave me hope . . . faith . . . for the future.  I remembered how important Nature is to me, and how important being with Nature is to me.  And I saw the power and majesty of Nature, if only briefly.  And today reminded me of rebellion, and of being young . . . and strong.  Today I walked, and hiked, and talked, and laughed for five hours. Five hours!  It was the most exertion I’ve had since the transplant, by far.

Today I felt strong.  Very strong.

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Some not-so great news

May 12th, 2010

My last post was an honest and authentic expression of my thoughts and feelings about my current state of being.  I wasn’t hiding anything.  But there is something else going on.

This morning I awoke with a runny nose and some congestion.  This could be a minor bacterial infection, which would not likely be a problem to snuff out.  But, given that my mucus is clear, bacterial infection seems unlikely.  Viral infection is more consistent with that sign.  It could be one of a number of common viruses that cause runny nose.  For some of these, anti-viral treatments are available.  For many, the viruses don’t even have names, but they don’t cause dangerous infections either.  I’m hoping for one of these, of course.  It could be the flu, and (despite rapidly increasing resistance) that is treatable with osteltamivir.  But it could be something much more dangerous:  the seemingly innocuous, simple, common cold.

While the common cold causes the mildest of infection in immunocompetent people, in me, it could be a disaster.  Permanent scarring of the lungs is one outcome; death is another.  As no treatment for the common cold exists (though a number of experimental therapies are soon to help out), recovery relies on one’s immune system entirely.  Chicken soup may soothe, but it doesn’t cure.

Viral infections are defeated by lymphocytes.  The two main groupings of lymphocytes are T-cells and B-cells.  T-cells circulate in our blood, looking for proteins that are not self.  When one is found, the T-cell starts dividing, and some of those T-cells seek out B-cells.  The T-cells notify B-cells of the presumptive invader, and through one of the most amazing biological processes ever elucidated, germ-specific antibodies are produced.  Those antibodies ultimately cause cells infected with viruses to die (among other things).

So T-cells initiate (and later suppress) immune response.  B-cells primarily give rise to antibodies. The problem for me is that I don’t have very many of either of these cells.  Unlike neutrophils (white blood cells that primarily fight bacterial infection) and platelets, many developmental intermediates come between stem cell and mature lymphocyte, and it can take up to nine months for mature lymphocytes to appear after transplantation.  I do have a few lymphocytes from before the transplant, but it’s not clear that they will be of much use.

At this point, I just have to wait.  If matters get worse, I’ll get a nose swab tomorrow.  That might reveal a treatable virus or an untreatable virus.  Maybe I don’t have a virus.  I just don’t know right now, but in addition to being energetic and happy, I’m starting to get pretty scared.

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Ol’ Cancer

May 6th, 2010

I’ve received a somewhat strong response to my last post, which is great. Keep the comments and email coming. Regarding that post, many have questioned my final comment about sympathy for my cancer. To be sure, I chose that word to be provocative, but I do have sympathy for all life that is marked for extermination (in this case, by my hand). I have sympathy for the forest that is clear-cut, and I have sympathy for the cattle that we grow to kill and eat. Of course these organisms are not trying to kill me, so naturally my sympathy is greater for them. But I don’t think my cancer is trying to kill me either.

Natural selection dictates that those that are more adept at doing whatever allows them to leave more offspring will be more common in future generations. If their reproductive advantage is heritable, then the traits that allowed them to be more numerous will also be more and more common in the population over time. Imagining, again, that our bodies are a colony of cells, or a nest of wasps, or a school of fish, or whatever, then it’s easy to see why slowly reproducing individuals or individuals that don’t reproduce at all will become less and less numerous over time relative to a rapidly reproducing member of the same group. I thought I’d made clear the restricted sense in which I invoked that term, sympathy.

Looking back, perhaps I could’ve been clearer, but that’s the nature of blogging. The arguments are made mostly extemporaneously, a kind of stream of consciousness. The entire work is presented piecemeal, across days, and new entries sometimes only make sense in light of previous posts. Plus my chief editor is on permanent leave. (Actually, Greg helps a lot with editing.) So I will clarify (or retort) a bit. I don’t mean to criticize any who have responded. (We normally live in Vermont, where I think criticism of what others have said is illegal). I’m just reasserting clarifying my view for the enjoyable dialogue.

When I first read some of the objections, the situation reminded me of a conversation I once had with a Physician’s Assistant who was at the time coring a hole in my ileum for bone marrow. During that delightful visit, we had a chat. At one point, I made some comment along the lines of what I’ve been saying here: The cancer cells are just doing their thing, trying to stay alive, like any creature. Stunned, he looked at me at asserted, “But cancer is bad.” I thought about his short sentence for a long time, and given the context of our conversation, he could only have meant one thing: Cancer is morally bad. Now, don’t get me wrong. He wasn’t suggesting that I had cancer because of my moral failings or past-life no-nos (although I’m amazed at how many do believe such things, and will actually tell me about it to my face). He meant that the cancer itself was evil. You know, just like how wolves are evil for eating cute bunnies.

I now get it that some of you thought that I had written the wrong word, intending instead to say empathy. The substance of the post shows my empathy for my cancer, certainly. I just wanted to express something else for the life that I am desperately trying to kill. That life is not evil; I just find myself in conflict with it.

Obviously, I hate (and I mean that word, too) that I have cancer. I often say (usually to poke fun at the bright-siders) that the only thing I’ve learned from cancer is that I don’t want to have it. I want each and every cell destroyed. Why else would I have endured four years of off-and-on therapy, with the last two years’ mostly futile treatments being virtually continuous. Just because I know the cancer cells are not trying to kill me does not mean I will relent in trying, by any means necessary, to kill them. Self-preservation trumps sympathy.

I invite dissent and alternate perspectives. I’m not doing this just to get my ideas out there; I hope to learn something from this blogging experience too. But I did say what I meant. Just because I have some sympathy for my cancer doesn’t mean I want to help it or keep it as a pet. Who didn’t have sympathy and cry for Ol’ Yeller? But that diseased, frothing mongrel still had to die.

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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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