What I've been up to lately

There’s good news and not-so-good news.

The good news: My latest scans, now a week and a half ago, were good. I hadn’t expected the scans to take place quite so soon – they were scheduled for a date while my latest two-week round of chemotherapy via the pump was ongoing, rather than for somewhere during the two weeks off from chemotherapy that would follow, as had seemed to be the custom. The good thing about moving the scan date up, I thought, was that if the results were bad then we’d have the two weeks off from chemotherapy to use on looking for a new treatment, and perhaps wouldn’t miss any treatment time. The bad thing was that I wondered if the oncologist thought we might in fact need those two weeks off for exactly this purpose.

As it turned out, however, we don’t need to go searching for a new treatment, such as a clinical trial, because the scans showed that the current treatment is continuing to make progress. More specifically, it appears that the various small tumors I have are getting smaller. There is (and perhaps has been all along) one decidedly larger tumor, and this one we were told is more or less stable. But the good news about that one is that it may actually be dying. As the oncologist said, it’s hard to see via the scans, but this was the first time I’d heard this possibility spelled out and treated so seriously. So that was the good news.

The not-so-good news: Teresa and I came home from the very encouraging meeting with the oncologist, and the draining of the remaining chemotherapy from the pump, on Friday, October 20, and for the next five days I experienced quite a lot of discomfort, or – to be more explicit – pain in my abdomen. I had experienced similar difficulties in previous rounds after the draining of the pump, but those had gone away. These didn’t. I wasn’t in a lot of pain but I was in pain (Sloan Kettering uses a 0 to 10 pain scale in which, as a nurse said to us, childbirth is a 10, and the breaking of a major bone is an 8; I was more like a 3), and it was persistent. The oncologist’s nurse felt that this was a form of acid reflux, which apparently the use of the pump – any use, including draining it and injecting inert substances instead, as they’d done with me on October 20 – can cause. But on Wednesday night the pain made it difficult to sleep, and so I reluctantly took a pain pill. (I would have preferred not to, since I went to some effort to wean myself off of pain pills months ago.) The pain pill helped a lot with the pain, but jangled my sleep, and so the next day I called the oncologist’s office to ask if I should change to another pain remedy that might provide similar pain relief with fewer side effects.

In the course of that phone call I described my various symptoms to the oncologist’s nurse. These included one that had no obvious connection to the pain and discomfort I’d been feeling: an instance of – sorry, there’s no more elegant way to put this – black stool. Black stool, as someone at Sloan Kettering said to us, is a red flag, because black is the color that blood takes on after it reacts with stomach acid. In other words, this was a possible symptom of a bleeding ulcer or, it turned out, a variety of other unpleasant things, including pancreatitis. So the nurse consulted the covering physician, and the two of them sent me to the Sloan Kettering emergency room (“Urgent Care”).

At Urgent Care they determined quite quickly that it was very unlikely I had a bleeding ulcer or pancreatitis. Among other reasons for their conclusion was this: it turns out that a common remedy for acid reflux, one that the oncologist’s nurse had recommended, namely Pepto-Bismol, can produce black stools – and I had been using Pepto-Bismol to try to deal with what was supposed to be acid reflux. I also don’t think the Urgent Care folks were all that impressed by the pain I’d had, but they were attentive to the results of the blood tests they ran. I get blood tests every time I go to MSK, and the previous Friday, when the pump was drained, my liver numbers had been fine and nothing else seemed dramatically wrong. But now my liver numbers were not fine, and my impression is that various other numbers were off too.

All of which seems to mean that my liver – that is, the healthy parts of my liver -- finally experienced side effects from the new chemotherapy. I had inflammation of the liver, though by no means terrible inflammation. Looking back, I suspect my liver had been reacting to previous rounds of chemotherapy too, just not as much; I think that’s the true explanation for the post-chemo difficulties I’d been having. The difference is that this time the difficulties were worse – and this time I got blood tests during the time those difficulties were in play, so now there was evidence to show what was going on. (Why did the chemo seem to affect me more after it stopped than while it was actually being infused into my liver? I don’t know. Perhaps it’s just a matter of the passage of time: the chemo doesn’t immediately disappear from the liver when the infusion ends, and the longer it’s there the more impact it probably has. But I wonder whether another factor might be that during the infusions my whole body, and specifically my liver cells, are braced somehow against the chemo’s impact, and that once the infusion stops, everything relaxes and then the impact gets felt.)

Anyway, once the doctors had an idea of what was happening, fortunately they also had a response. They drained my pump again, and this time inserted a mixture of inert substances and a steroid. So over the next week or two my liver will get a slow infusion – about a milliliter a day – of steroids, and this treatment should operate as an anti-inflammatory, as steroids generally do against inflammation. The result may be that my next round of treatment is postponed a bit, until my liver calms down, but hopefully that will be all.

So, in short, with a pause for the anti-inflammatories to work, I should soon be able to continue on the treatment which the scans a week and a half ago showed was working.

Of course, sorting all this out required a stay in Urgent Care from about 7:30 PM Thursday to 3 AM Friday, when I was admitted to the MSK hospital, and then I was a hospital patient for about 39 frustrating hours, from 3 AM Friday till about 6 PM Saturday. More on those 39 hours, perhaps, in another post.  

Good scan news

So last Wednesday I had another MRI and CT scan. On Friday, now a week ago, we went in to Sloan Kettering for an appointment with the oncologist and for treatment – knowing that if the scan results were bad then there might not be any treatment that day, and instead we might have to launch an intense search for a clinical trial to try to join.

But the results were good! All my tumors are either probably stable or they are a little smaller than they were. That means the current chemotherapy regime is working, and since it’s working it can continue unchanged. When our oncologist told us the news, our day was instantly transformed, from deeply stressful to quite routine. Off we went for that day’s chemotherapy (part of which is still making its way to my liver, one milliliter or so per day, via the internal pump I have).

By the time we got to Sloan Kettering, we’d already begun looking for available treatments, either standard ones that haven’t yet been used on me or clinical trials of experimental approaches. Teresa put together a spreadsheet of about 80 different possibilities. We’re not throwing that away, or stopping the research. But now we know we’re not in a crisis, so we can look more deliberately. And we also know that with every month that passes, new treatment possibilities emerge. So even if my next scan – about two months from now – is less positive than last week’s, we’ll have more knowledge and likely more options to work with in our search.

Meanwhile, the main current task is continued attention to my “bowel regime.” Sigh.  

Mind over matter

I used to do a form of physical therapy that focused on mind-body connections. Quite often, the therapist would ask me to do something I had no idea how to do – say, to bend some part of my body in a direction I wasn’t aware it could bend at all. But I would try and she seemed to feel that my trying produced some results. So it appeared that it was possible to send a mental command out even without being sure that any part of my body could actually receive the command. One reason this made sense to me was that I had the impression that great athletes, and dancers, and yoga adepts really can do things with their bodies that seem simply inconceivable for others: there are circuits within us that lie dormant, or scarcely perceived, but that can be activated. And trying, mentally, to activate them is itself a part of the process of bringing them into action.

If all that is so, then perhaps the same principle can be applied to cancer. I have no idea how to issue mental commands to my immune system. As far as I can tell, this system operates on its own without any conscious input from me. And yet – what if there is a way to guide my immune system (or other parts of the body’s potential defenses against cancer)? I certainly wouldn’t give up on scientific medicine, but if I can give the drugs a boost, well, so much the better.

It seems, for example, that part of what is going on in cancer is that tumors have ingenious ways of avoiding notice by the body’s immune defenses. If immune cells can’t recognize tumors as hostile intruders, they won’t attack. Some current immunotherapy drugs, the “checkpoint inhibitors,” address this difficulty; as I understand it, the specific problem they address is that tumors fool immune cells’ “checkpoints,” and the way they address this problem is to inhibit – turn off – those checkpoints. So presumably the same result could be achieved if I could somehow order my immune system to turn off those checkpoints.

Could I possibly do this? I really don’t know. I do know that cancer affects people in very mysterious ways. Some people go into remission without using any of the apparatus of modern scientific medicine. What have these people done to achieve this? Again, I don’t know. But I think it stands to reason that if people have any power to control how their immune systems function, they need to try to exercise that power in order to activate it. I haven’t done by any means as much of this as I’ve meant to, but lately I’ve been thinking more about how to go about it.

How one should exercise this power, even if it exists, is mysterious. Maybe the right approach is to seek a zen tranquility, in which the body moves of its own accord towards a natural harmony. A visualization CD that I have encourages you to visualize friendly magical beings around a powerful, healing light (though it has some tougher images of immune cells at work as well). Or perhaps, particularly with respect to checkpoint inhibitors, one should visualize the immune cells achieving a form of grace, in which each one “was blind but now I see,” and I’ve tried to visualize exactly this.

But I also incline to another strategy. Good health may feel like natural harmony or salvation, but the microscopic world of the immune system doesn’t seem very zen. It might be more accurate to describe the immune system as a regime of constant slaughter, in which your body’s cells set out to destroy the agents of illness that they encounter. Here’s a description of the functioning of “killer T cells,” from a google search: “When the perfectly shaped virus antigen on an infected cell fits into the Killer T-cell receptor, the T-cell releases perforin and cytotoxins. Perforin first makes a pore, or hole, in [the] membrane of the infected cell. Cytotoxins go directly inside the cell through this pore, destroying it and any viruses inside.” This is the world of violence, and that violence against the tumors is exactly what I want to incite. So perhaps the right image to visualize is of immune cells like soldiers, equipped with night goggles to make sure the cancer cells cannot hide under cover of darkness, and ready to attack with all their might – and I’ve tried this too.

Perhaps, however, images that try to echo real elements of the immune system are too literalistic. Maybe a better possibility is more metaphorical: if I want the tumors gone, what I want is for them to be erased from my body. Teresa imagines, and I’ve tried to as well, an eraser vigorously attacking each of the tumors. This image of erasure strikes me as vivid and physical and also a bit funny, and all of that may be ideal.

Or maybe one should simply send out a direction to the immune system, telling it to attack the tumors. This may be a call which there are no circuits to carry and no recipients to answer. Or it may be the kind of call that begins the difficult process of learning to do something you never had to do before. In any event, the only way to find out is to try.  

My current chemo -- an update

I’ve now had two rounds of the new regime – an infusion of mitomycin over a 45-minute period, and a two-week infusion of FUDR, both injected through my pump. Now I’m in the two-week off period that follows each round of treatment, and soon I will have a scan that will say whether the new treatment is working.

Meanwhile, I’ve learned more about the treatment itself. First, I’m pretty sure now that I was wrong to write after the first set of infusions that a single needle seemed to have been used for two separate insertions, one for each of the two drugs being injected into the pump. In hindsight, that doesn’t really seem conceivable, and my impression from the second set of infusions was that in fact a new needle was used for each of the two drugs. I guess the sheer size of those needles distracts me. (They need to be long, by the way, because they’re not primarily going into me – instead they’re going through a little bit of me on the way to their target in the pump. But even the nurse for one of the rounds agreed that they are big needles.)

Second, yesterday for the first time I grasped how much of the FUDR is actually going to my liver in the two-week infusion process. The answer for the past two weeks was: 18 cubic centimeters. I know this because the nurse drained 12 cc’s  of the drug from the pump, and she explained that they expect to drain between 10 and 15 cc’s – out of a total of 30 cc’s that they put in at the start of the process. (Once the medicine is drained at the end of the two-week treatment period, by the way, the pump is then loaded for the two-week off period with an inert substance, a mixture of saline solution and heparin, an anti-clotting agent.) So that means that over the two weeks of the infusion, just a shade over 1 cc of FUDR was making its way to my liver each day. That must say something about how powerful a drug FUDR is. I hope that power is making itself felt against the tumors. It’s also probably having some impact on my healthy liver cells, but fortunately the blood test results show that my liver is doing well despite these medical affronts.  

Third, after the latest infusion I had two or three days of abdominal discomfort. It appears that this may have been, essentially, acid reflux, and fortunately the treatment Memorial Sloan Kettering prescribed – increasing my anti-acid reflux medications, including the old standby, Pepto-Bismol – seemed to address my symptoms. But what was most surprising about this was the comment of the MSK nurse, who told me that any use of the pump, even with inert substances, can cause difficulties like this. This I suppose is further proof that you can’t fool Mother Nature – if you put a foreign object inside your abdomen and inject things through it to your liver, your body may acquiesce but it won’t necessarily be pleased.

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Still, if the scan results are good, I’ll be happy to continue treating acid reflux!