Freeing myself of my pain patch

Almost since I was first diagnosed with cholangiocarcinoma, I’ve been on a pain patch. Or rather, to put the point more accurately in a physical sense, a pain patch has been on me – a new one every three days, alternating from one upper arm to the other. Teresa puts them on and takes them off, and in addition to other precautions washes her hands after disposing of them, because they are designed to infuse a painkiller through the skin.

Which painkiller? Fentanyl, whose danger is evident from any number of news stories about people dying from overdoses of it. My own dose levels were never high; for most of my treatment I was on what I was told was an “infant’s dose,” delivering up to 12.5 micrograms per hour. Earlier this year, when I had a series of rounds of painful digestive trouble, I went up as far as 50 mcg (it’s possible to go much higher than that); then quickly down to 37.5.

Then, as those painful episodes receded, I wondered whether I really did have any pain left at all. When you’re on a painkiller, you can know that you feel all right, but you can’t know whether, if you weren’t on the painkiller, you’d feel any different. The only way to find out is to reduce, or go off, the painkiller. Meanwhile I didn’t like having the patches; though my thinking still felt clear, I occasionally felt that I jumbled words in conversation, and I knew that if I were to drive while on the patch – although medically this is viewed as appropriate as long as you’ve adjusted to your dosage level – there might be awkward moments if I were in an accident.

So, with Sloan Kettering’s approval, I set out to see if I could return to life without a pain patch.  About a month ago, I got the dose down from 37.5 to my original 12.5, and then three days later we dropped the patch altogether, so that I was at 0. At that point I didn’t feel very well and so went back on the infant’s dose. However, the people at Sloan Kettering – my oncologist and the pain management nurse practitioner who works with my oncologist – were also interested in seeing me get off the patch altogether if possible. So they advised me to take off the patch three days before my next chemo session, because by that time in my two-week chemo cycle I’d be feeling about as good as possible in other ways, so whatever effects removing the patch might have wouldn’t get confused with the impact of the chemotherapy itself.

So shortly before that next chemo session, which took place on May 5, I stopped using the pain patch. And I haven’t needed one since. I think my body has sorted out enough so that I can tell that the cancer is probably causing me a little discomfort – 0.5 to 1 on the 10-point scale that Sloan Kettering regularly uses (it’s obviously subjective but then so, as to a large extent, is pain). For that I don’t need a patch, as the Sloan Kettering folks agreed.

But there has been one catch to this story: to get off the pain patch I had to go through withdrawal. Not the horrifying discomfort involved in something like breaking a heroin addiction, as we sometimes see on TV, but … not nothing either. I had never felt any craving for the pain patches at all, but nevertheless ending their use wasn’t easy. It was hard for me to get to sleep, because my muscles felt twitchy and my skin felt sensitive and sometimes parts of me felt hot. Why just at night? Apparently because you’re tired, and also because there’s less to distract you from whatever’s going on in your body.

I’ve now been off the pain patch for about two and a half weeks, and these symptoms have abated, but I’m not sure they’ve totally gone away even now. It seems that the most common solution is to take other drugs such as lorazepam, an anti-anxiety drug, or others. Our oncologist told us yesterday that many of her patients who stop using the patch still regularly take some replacement medication in the evenings. I’d rather not go down this road, but if necessary I will. After all, the whole point is to have your body functioning as well as possible: that’s why I started on the pain patches, to avoid chronic lowgrade pain, and if I turn out to need something else now, to avoid loss of sleep, so be it.

Cancer can cause a lot of pain. Fortunately that hasn’t happened to me so far, except for short bouts of digestive trouble which don’t seem to have been directly cancer symptoms at all. And if you need something for pain, it’s worth getting habituated to that something. But it’s all a prospect I’d rather avoid.

In the back of my mind is the possibility of medical marijuana. This is legal in my state, except of course for the fact that it’s still illegal as a matter of federal law. It’s also underresearched, as I’ve mentioned on this blog before. And in my state it’s surrounded by annoying restrictions: you have to establish a “3-month bona fide doctor-patient relationship” before the doctor can provide you with the necessary medical marijuana certification; getting this (at least at one clinic whose procedures I’m looking at) costs $350, and the chance that any of this money, including the price for subsequent purchase of the marijuana at a specially licensed vendor, will be reimbursable by health insurance is probably zero. (Could you even claim it as part of a medical expense tax deduction on the federal 1040 return? Well, not without potentially exposing yourself to self-incrimination under those still-applicable federal prohibitions.) All of which is particularly frustrating since my understanding is that marijuana, though it can be habituating, does not make you subject to physical withdrawal symptoms. So all things considered I may stick to opioids if I have to use anything – but I’d rather stick to nothing at all for pain, which is my current, happy state.

Customer service phone calls in the chemotherapy suite

Friday Teresa and I were at Sloan Kettering for my biweekly chemotherapy. All went pretty quickly in the morning (things slowed down later, but that’s okay), and so quite soon we found ourselves in our chemotherapy area. As I think I’ve written in past posts, each patient has his or her own space. They’re not very big, but big enough for the patient’s reclining chair, two chairs for guests, a computer terminal for the chemo nurse, and the stand on which the chemo drugs are hung. These spaces are separated from each other just by curtains, so you can basically hear everything that goes on next to you. The most awkward part of that is that you hear your fellow patients discussing their chemo side effects, often digestive – but the awkwardness is eased because they hear you too, so everyone seems to just get on with it.

But this time, from next door (that is, across the curtain, to my left) we heard very little from the patient, whoever he was. Instead we heard a lot from someone – I never laid eyes on her – who Teresa says was the patient’s daughter. This woman was combining her being with her father (something I admire) with her work as a customer service agent. At first we heard not only her side of the conversation but also her customers’ side, because she had them on speaker. When I said loudly, across the curtain, that I didn’t think we should be hearing these calls here, she didn’t apologize or even say a word in response, but she did pretty much stop using the speaker. I didn’t pay close attention, but it certainly sounded like she was fielding calls from a series of unhappy customers, some of whose grievances sounded pretty acute.

Teresa and I like to spend the chemotherapy time very quietly: yesterday Teresa was doing emailing and I was reading a research book for my biography of Arthur Chaskalson (which I’ve been working away at all this time that I’ve been in treatment). Not everyone has the same approach, and if the people in the treatment area next to us want to have a loud family conversation, we sigh and say nothing. But customer service calling inside the chemotherapy suite? That seems to violate the basic ground rule that we’re all supposed to be focused here on health, our loved ones’ first but also that of the people getting treated in the next treatment area over.

A note on my mouse model

Just an update on this aspect of my treatment: our oncologist told us two days ago that she would be checking to see whether the mouse model is still progressing – which I think means whether my cancer cells, having grown successfully in two mice (one after the other), have now been injected into and successfully grown in a third.  

Whether my mouse model will actually tell us something about what to do with my disease remains uncertain, our oncologist pointed out. But she added one more, interesting thing: if this model does “take,” so that my cancer cells can dependably be moved to one mouse after another, then apparently I will be the source of an immortal line of cells, like those of Henrietta Lacks.

By now there are probably a lot of immortal cell lines, so mine will hardly be unique. Moreover, I don’t consider my cancer cells to be part of “me” (they’re more like my evil twin, sharing the same genetic base but turned all wrong) – so their life in mice or test-tubes won’t feel like some form of immortality for me. But this is still kind of cool.