An MSK fragment

At various points in my treatment at Memorial Sloan Kettering, things have happened that shouldn’t just get forgotten. That doesn’t mean that I think all the important medical developments are over; I don’t think that at all, and we’re still vigorously looking for possible next steps that could alter my situation, and about which I look forward to blogging. But still, along the way, there’ve been some moments that deserve to be recalled for other reasons. I’m going to try to find some of these moments and make sure that they too have their place in the little history that the blog is meant to be. Let’s call them “fragments” from MSK.

So: I’ve just finished a 5-day course of radiation, meant to attack the tumor activity I’ve recently experienced. Needless to say, this is a high-tech business. With the help of almost 10 different staff members, plus the eery, powerful-looking radiation machines themselves, MSK carefully immobilized me as much as possible, aimed the radiation beams at particular spots marked out on my abdomen with tattoos, and monitored the success or failure of each image-taking venture.

My role in this was to be more or less naked. This was, sadly, not that exciting – but still members of that team of staff members (did I mention they were all attractive young women?) were always on the job, aiming the beams and, when necessary, moving parts of me out of the way so that each radiation burst could reach its destination. It was all pretty clinical. As to privacy, what privacy? For clothing, I was mostly reduced to a hospital gown that opened behind me, and lifted up for easy access as needed; even as an enlightened adult (I hope) I found this embarrassing, but a hospital gown opening in front of me would have presented essentially the same problems and called for the same responses.

None of that, however, is actually my point. My point is to ask this question: where were my clothes during all this? Weren’t they in some well-designed patient locker, suitable to accompany treatment designed and administered with such technological sophistication? Well, no. Why not? Because this particular part of MSK does not have well-designed patient lockers. The secret of good locker design has been found, but not applied here; in the midst of various buttons is a lock mechanism that does not, well, lock. Instead, the patient carries his or her belongings with a somewhat older technological tool, a large brown paper bag. I mean, really!

An update -- on side-effects and the subway

Back in the summer, as readers of this blog will recall, I had radiation treatment, fifteen days of treatment which concluded in mid-July. It was high-tech and highly effective; the doctors who reviewed the post-treatment scans found no clear evidence of active cancer, and were very pleased. There’s no sign that this has changed; my cancer may come back but it has been quite decisively defeated for now.

What hasn’t gone away is (or are? - should this verb be singular or plural?) the side-effects of the treatment. There seem to be two sources for these side-effects. The first is the radiation treatment itself, which didn’t feel in any way unpleasant at the time but evidently is a deep burden on the body. The second, Teresa and I think, is all the prior treatment that I’ve had. My liver, in particular, withstood all this treatment for years – but it seems as if the radiation treatment was a tipping point, and now the side-effects are getting more play.

Not that much more play, I should emphasize. I’m still reading and writing for my biography of Arthur Chaskalson, South Africa’s distinguished jurist. I’m also negotiating with the publisher with whom I have a contract to see if we can find a way to agree on the right length for the book (what I gave them was much longer than what they turned out to want); this process is arduous enough to count as a side-effect all by itself!

But there are medical features, the main one of which is sheer fatigue. An example: the day before yesterday, October 26, I was in New York to attend an excellent workshop presentation by a former colleague, but before that got started I made a trip to my dentist. This required coming up out of the subway at 54^th Street and Madison Avenue. Fine – except that at least in the subway hallways that I walked through (and I don’t know any other routes because I don’t know this station) – I confronted three ways out: an escalator running down; a staircase; and another escalator, which wasn’t going up or down. The result was that I had to climb 80 stairs, with only the stairway rest platforms to stop at (there were more stairs afterward, but I’ll stick to these 80). It’s clear, unfortunately, that I don’t have 80 steps of ready climbing ability available for the asking. I went slowly up; along the way a woman asked me if I needed her to get me some water. I did, actually, but declined – I couldn’t really imagine how she would have carried out this generous offer, there in the middle of the subway exit route. I felt that I went through much of the afternoon barely able to move any further at all.

A side note on the subways: Subway performance is most often measured in terms of on-time trains. At the same time, having a down escalator running but no up escalator is also a sign of a system that isn’t working right – another symptom of New York’s infrastructure breaking down, and another reason why I’m fortunate to be able to stay home these days.

This will pass.  (My recovery will probably be quicker than the subway's!) I’m now doing physical therapy, and though I haven’t been at it long I feel like it has already been helpful. It will be sometime before I’m anything like “strong,” but I can certainly become stronger than I’ve been. Still, the set of side effects is startling to experience. I can and do fall asleep in a moment – and then I wake up in the middle of the night eager to read a South Africa book. Then there’s been the swelling from water retention, treated with diuretics: too little treatment doesn’t do the job, too much seems to have other internal effects. And a new antibiotic. Cramping in my legs and hands. And so on … The radiation treatment information Memorial Sloan Kettering gave me warned of possible prolonged fatigue, and other symptoms, yet it’s all a bit wearing.  Still it will all pass, as I said, some of it literally as well as figuratively. 

So that’s my news – nothing to get alarmed about, but a set of effects that I’d like to shed as soon as possible. Sorry for this prolonged complaint!

An update

Some of you may be wondering what’s up with me, and I don’t want to leave you in suspense – though the answer is that not much is actually going on.

It’s now three weeks since my radiation treatment ended. In about a month I’ll have a CT scan and a PET scan, and then they’ll know what the treatment has accomplished. Why the delay? I believe I’m in the process of waiting for my liver to settle down enough from the impact of the treatment so that the doctors can tell what’s really going on. In the meantime, again, nothing very dramatic is happening.

One thing that is interesting is that I’m still having side-effects. “Still” isn’t quite the right word; I think my side effects – though pretty modest – have increased over the weeks since the end of the treatment. This doesn’t seem to be unexpected. Radiation is a blow to the body, and its effects, and the body’s reaction to them, apparently quite often only emerge over time. Probably my side effects were also somewhat increased by the chemotherapy I had every day along with the radiation; if so, that too should tail off since the chemotherapy ended the same day as the radiation did.

So I’m more tired than I used to be, and more prone to getting out of breath; all of this is fatigue, evidently, and according to the patient education brochure MSK gave us when this began, fatigue “can last for several months.” I also have a patch of irritated and itchy skin on my back. I never did quite figure out whether the radiation was all going into me from my stomach side, or whether as the machine’s components whirled around me it was giving me doses of radiation from underneath, through my back, as well. Either way, something about this process has disagreed with my back. Skin issues, MSK told us, “often take… 3 to 4 weeks” to resolve. And my bloodwork is off in various ways, most clearly with respect to my platelets, which promote blood clotting. Mine are well below normal. That means I bruise easily, and as a result I have various purple spots here and there; my body is more colorful than usual! Meanwhile, of course, one should never forget one’s bowel regimen; mine continues.

All that said, I’m basically fine. I’m receiving no treatment right now (except a steroid via my pump, since my liver seems to appreciate a steroid infusion), It’s a little surprising not to be getting treatment, but it will be great if it turns out that I don’t need any treatment for some time to come.