(4) 2 Aug 2012 – The Fog of Medicine

I was due to start radiation July 4. The mold to cradle my shoulder in position (aiming for millimetre precision) had been made. Three alignment points were marked with an ‘X’ on tape that was supposed to remain attached to my skin for the duration of the 20 treatments. In case they didn’t, the most important mark was backed up by a permanent tattoo.  On June 26, I found a new lump in my left armpit, on the chest side, just below the site of surgery where 18 lymph nodes had been removed. The lump was small, like a dried lentil that moved under my skin when I felt it.

I remembered that the last lump I’d found, on my arm, also near a surgery site, had turned out to be nothing—a seroma, a pocket of lymphatic fluid isolated by scar tissue. To me, that lump felt like the lump that preceded it, which was malignant—but the surgeon didn’t agree. He referred me for an ultrasound and needle biopsy, and his benign verdict was confirmed. So this time I knew my self-diagnostics were fallible, and I was at risk of being labelled a hypochondriac. Nevertheless, I reported my discovery to the radiation oncologist—actually, to her telephone receptionist, who returned my call after half an hour relaying the doctor’s message: “It’s probably just scar tissue or another seroma. Don’t worry about it.”

Still. The new lump felt like the earlier lump in my armpit began to feel as it grew, in the days before surgery. This was no time to save face. With the thought that some professional should at least have a look at it, I visited my GP, who, despite running an extremely busy clinic, somehow manages to be available on short notice. I went with misgivings, as he tends to over-react, seeing the direst possibilities in any symptom; so I wasn’t surprised when he said it felt like a tumor. This time, after I called the radiation oncologist’s receptionist, I got called back by the doctor herself. She still wouldn’t see me; but on the unlikely chance it was a tumor, she put my radiation therapy on hold and sent me back to the surgeon. The surgeon (who had earlier shepherded me, very graciously, through the seroma episode) again agreed to check out this new lump. To speed things up, he offered to attempt a needle biopsy there in the office; but the effort was unsuccessful; the lump was hard to hit with the needle, because it was too mobile, because of its awkward location in my armpit, and because he had to do it ‘blind,’ working without imaging technology. So he ordered an hospital ultrasound with needle biopsy. The hospital would call me with a booking, for the following week at the earliest. If it was another seroma, I would know right away, but if the lump turned out to be solid, I’d have to wait for the pathology report—another week. Then if it was malignant, have surgery, and then recover before finally embarking on radiation. I worried that the delays would give the melanoma a chance to spread further.

The radiation itself was already a source of doubt. I met the radiation oncologist back on June 13 to discuss my prospects. She told me that radiation therapy was effective in reducing the chances of local recurrence—from 25% to 6%–but that it had no positive effect on longevity. There would be side-effects that sounded like severe sunburn, with skin coming off in patches if I were so careless as to rub it with a towel after showering. Fatigue. A 30% chance of lymphedema—an accumulation of lymph causing swelling of the arm, as a result of radiation damage to my lymphatic system. (On top of the surgery, which, in removing 18 lymph nodes and leaving scar tissue, had damaged it already.) The lymphedema being an affliction which would only get worse with time. Oh yes, and damage to 20% of my left lung!

Why, I wondered, should I cause so much destruction to my body if nothing is to be gained in longevity? I was on the verge of deciding against radiation therapy. But when she hears something she doesn’t like, my wife Claudia turns to the internet. Yes, she found studies showing no statistically significant life extension from radiation therapy for melanoma following lymph node dissection. But she found other studies, at least as credible, that did show benefits in long-term survival. One showed an improvement in disease-specific survival from about 30% to 55% at the 5-year mark. So, in the end, I chose to have the radiation.

I was learning to second-guess my doctors. The first dermatologist I saw thought I had a squamous cell cancer; a benign type. When it turned out to be melanoma, the surgeon under-rated its risks (8.0 mm depth, ulcerated, with lymph-vascular invasion is high-risk). I was told, after the second malignant lump was removed, that no oncologist would see me to discuss treatment to prevent recurrence. That turned out to be one institution’s policy, not a general rule; my GP referred me to an oncologist who immediately ordered aggressive preventative interventions.

Now I had another lump, and was being told to put treatment on hold and wait two weeks for a diagnosis.

Again, Claudia was the most proactive one. She found a for-pay PET/CT scan service in Seattle. (There was one in Vancouver too, but it was shut down for maintenance for the first two weeks of July.) All I needed was a referral from my GP and $3000. I booked it on a Friday, was scanned on Monday, and got the report Tuesday. It was another tumor.

There’s more fog. My oncologist recommends ipilimumab, a newly-approved drug that fights melanoma by stimulating the immune system. Unlike traditional chemotherapy, ‘ipi’ actually has been proven to have significant survival benefits. I found a study that showed a 5-year relapse-free survival rate of about 65% for Stage III melanoma patients treated with ‘ipi.’ Stage IV patients—where the disease has spread to distant organs—had a 45% survival rate. Getting the ipi before I progressed to Stage IV seemed like a good idea. There was a clinical trial in Edmonton designed to compare the effectiveness of two different doses of ipilimumab: the dosage approved  by Health Canada and the FDA, and a higher dosage. When I first inquired about this trial, I learned that it required participants to have at least one tumor that could be monitored. At that point, my third tumor had  been surgically removed, so I didn’t qualify.

Consequently, I had mixed feelings when I got the Seattle report showing the new tumor. On the one hand, it was bad news—another tumor. On  the other hand, I now met the criteria for the Edmonton ipi trial. I called them immediately—and was told the trial was fully enrolled. It could not accept another patient. This was part of a large international study, which was expected to be open for a year or more, but which reached its enrollment limit in four weeks!

Back to Plan A. I booked surgery and had the new lump out seven days after receiving the fax from Seattle (yes, in the medical world documents are still sent by fax). I started radiation July 16, two weeks after the originally scheduled date. I have another path to ipi, but it’s not ideal. Under Health Canada rules, I can receive ipi if I fail treatment by conventional chemo first! (This, we assume, is a cost-saving measure.) So I’m slated for a cycle of ‘d-tick’ (dacarbazine) starting a week after radiation finishes. It is expected to fail—at a cost, which I’m assured is minor, of some toxicity, and a four-week delay in starting ipi.

That concludes my report from the trenches. What does it have to do with the Phantom Self? Maybe not much. I’m engaged in a life-or-death struggle, like millions of other life-or-death struggles people have engaged in. And yes, I want to stay alive, and as healthy as possible, for years to come. I’ve talked a lot in these pages about the special emotional concern we have for ourselves which is not rationally required, and how I have the same kind of connections to my future self as to other people. When facing a life-threatening disease, does it really make any difference? Am I not reacting to it in the same way as anyone would react?

Maybe, maybe not. I don’t have an objective yardstick to make the comparison. I can only report that—compared to other times in my life when a lot has been at stake—I feel less anxious. That is worth something. I am less obsessed with my own future than I used to be, and more engaged with other people. This is what Derek Parfit reported in Reasons and Persons, after he realized that “my death will break the more direct relationships between my present experiences and future experiences, but it will not break various other relationships. That is all there is to the fact that there will be no one living who will be me.”

There is still a difference between my life and the lives of other people. But the difference is less. Other people are closer. I am less concerned about the rest of my own life, and more concerned about the lives of others.

All animals—all vertebrates, at least—are jolted into action by the “fight-or-flight” emotions when an obvious threat to survival appears on the present scene. The human animal has a uniquely well-developed ability to project those emotions onto threats which are merely imagined. We are easily panicked by dangers that are not clear and present—that are far off, sometimes predictable, often very uncertain. The fight-or-flight emotions are well adapted for fighting and fleeing, not for long-term planning. They provide motivation, but do not channel it effectively into the intricately coordinated actions required to accomplish long-term plans.

I think, overall, with Claudia’s help, I am coping with my melanoma about as effectively as anyone could. Finding the least-hazardous path through the smoke and hubbub requires sensitive discernment and good judgement—abilities easily overwhelmed by primal emotion. As I search, I am, I admit, looking out for Gordon. But I am moved more by sympathy, and by shared goals, than by self-concern, and I think that makes me more effective. It certainly makes the journey pleasanter.


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One Response to “(4) 2 Aug 2012 – The Fog of Medicine”

  1. Claudia says:

    Hi Gordon,
    I found this last post kind of depressing. Smack up against the stats. They look so grim, so stark. It’s weird, when I look at you, you seem all right, much as before except for having a beat-up arm. I dare to hope. And then the stats just throw me down. I wish for what is naught. I wish to undo the past, and know I can’t, and know that all this wishing is useless. It can’t change anything. It’s some kind of outlet for emotion, but unproductive.
    I am sure that the nascent ideas you are struggling to nurture do have an effect. You are so much more calm than me. You don’t get into these feverish states of anxiety—as I do. I live with fight or flight emotions all the time. Stomach churning, heart pounding. I can detach myself a little from them because I recognize them, label them as the fight or flight emotions. I don’t necessarily endorse them, they arise like choppy water on a kayak trip. But most days they are there.
    I keep wondering whether we are frittering away valuable time. I feel I am frittering on this book. It’s not a bad book, but I feel I should be helping you more, because we don’t know how much time you have. Of course, none of us know how much time we have. Proverbial buses lurk. But I think it’s safe to say, that in your case, it could be a little more pressing. We should definitely be making videos—documenting your ideas. You have said, that you have put forward arguments, advanced the understanding, other people can take it up, and take it further. But I don’t see a whole lot of people thinking on your lines. It seems a pretty eccentric point of view that we have evolved not to have. Thinking the way you do is definitely going against the grain! I sometimes catch a glimmer of understanding—through a glass darkly. You see it and then you don’t. I sometimes get it intellectually, but it hasn’t seeped into my emotional core. That is pretty much unreconstructed cavewoman, alert to every trembling in the grass. Could be a lion!
    I love you a lot!

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