The complicated news from MSK as of the end of January 2019

The prologue:   

MSK gave me a prognosis for the first time, when we met with our oncologist on Thursday, January 24, 2019. The prognosis is six months.

The reasons:

I had been having difficulties. A scan back on December 11, 2018 had determined that my cancer was again in action. Shaping a response to that took time, both because of the holiday season and because I’m sure the doctors wanted to be as careful as possible. The conclusion they seemed to be coming to, even before we met on January 24, was that there were no good affirmative treatments likely to be available. We had no doubt this was a reasonable assessment of the situation, but felt that it might still be true that even a treatment unlikely to succeed was better than no treatment at all. Our oncologist’s view was, we thought, evolving to the opposite perspective: that if no treatment was likely to be successful then there was no point in trying them at all.

What decided the issue was a series of scans in late January, which included a January 15 X-ray of my abdomen as well as a CT scan, that same day, of my abdomen and pelvis done during my digestive blockage visit to MSK’s Urgent Care ward (a visit I blogged about as well). They also included an MRI of my pelvis on January 22. I had yet another scan on January 25, but that was to diagnose whether I had suffered a broken foot or not, and didn’t otherwise contribute to the study of my condition.

In truth, the information in theses scans is hard to keep clear and distinct. One scan is referred to as comparing its findings with data from a scan done a couple of days later, but I had no such additional scan that day. Another scan attributes the wrong disease to me – saying I have colon cancer when I actually have a different illness, cholangiocarcinoma. These mistakes are a bit unsettling, but the general import of the scan results nevertheless emerges clearly.

If the scans proved determinative, what led MSK to determine that they should do the scans in the first place? Their concerns were triggered in good part by the MSK physicians’ growing suspicion about a lesion, a damaged area, in my right iliac bone, which is part of the pelvis. MSK had been aware of this spot since approximately April 2018, but had not been particularly suspicious about it. Now, however, yet another scan in December 2018 had shown growth in this spot, and growth is important. For our part, we too had hoped not to need to pay attention to this spot. After all, I didn’t think I had any symptoms of it at all – but over the weekend before the scan I began to realize that maybe I did have symptoms, perhaps from walking further than was comfortable, perhaps from such minor motions as bending over to do the dishes. Mostly not a lot of pain – but cholangiocarcinoma is full of minor, yet ultimately meaningful, symptoms. Meanwhile, growth is cancer’s specialty, so the fact that this spot had recently started to grow was a bad sign.

The scan series in January 2019 appears to have confirmed two thoughts for our oncologist. The first is that the cancer has escaped from the liver and reached the bones as well. One report, on still another CT scan done on January 15, 2019, indicated this but not elaborately; a second, on an MRI scan done a week later, January 22, 2019, left no room for doubt. There has been a lot of damage to the bones of the pelvic area, presumably the result of its infiltration by the cancer, and all of it appears to have taken place in the last 12 months. Parts of the bone have probably died. All of this makes me vulnerable to things like bone fractures, including hip fractures, which would put me right away in a wheelchair.  

When the skeleton weakens, you are at greater risk both for “spontaneous” fractures, which can apparently take place while you’re doing nothing more strenuous than sleeping, and for fractures caused by impact and accident. There are things that can be done to reduce the chances of incident, such as installing assistive equipment, like guide bars, machinery to help me get around the house; as we do more with this I may blog about our progress, but in any case this effort is now underway.

As to the impact and accident fractures, for me those are more likely than they otherwise might be because of all the water I’m still retaining, especially in my feet. The water retention is another impact of my damaged liver (and of its interaction with the diuretic medication, and in turn with my kidneys). The water retention in itself isn’t a big problem, and doesn’t contribute to my underlying cancer in any direct way. However, in the Department of Irony, currently running strong, a couple of hours after we got home from our Thursday meeting last week with the oncologist, at which we’d received a lot of precautionary guidance, I fell at the bottom of our stairs. Fortunately the fall was only two steps down. I landed hard, but even more fortunately the fall didn’t fracture anything; it caused “just” a sprain. My left foot did take on some remarkable colors right away. Depending on how many separate sprains I gave myself, recovery could take as long as six or seven weeks. So far, however, things seem to be moving quite quickly and positively.

The second conclusion our oncologist and her colleagues have reached is that my liver has already been seriously damaged. One measure of such damage is the growth of the cancer itself, and the January 15 CT scan of my abdomen and pelvis lists a number of growing, and probably new, changes in my liver and bile duct of this sort. Other evidence comes from blood testing of liver function. My general sense is that my liver and kidney blood numbers were good until the conclusion of the high-intensity radiation treatment this past summer, and that at that point they began to deteriorate. It’s easy to see what caused the damage: not the water retention, but rather the combination of three years of different powerful treatments, including chemotherapy and, most recently, high-intensity radiation. These all did their job, staving off or pushing back the cancer for years – the oncologist has been happy to have me as an “outlier” to the normal course of the disease – but the price was liver damage. I’ve recently read that actually the liver handled over 500 different functions in the body, not just the 400 I’d seen referred to earlier. Any of those may now be malfunctioning.

What’s bad about liver damage is that there is no cure for it. It is possible for the liver to regenerate, but that is a slow process and one under nature’s guidance; there seems to be little if anything a doctor can do to bring about regeneration by direct medical intervention. There is no “liver-all” pill to take 3 times a day! The only method available to doctors of which I’m aware is resection – the complete surgical removal of part of the liver, but MSK has never seen me as a good candidate for this approach. That means that any heavy-duty treatment that gets applied at this point runs the risk of deepening my current liver problems, and if the liver stops functioning, that is really the end.

What is to be done next?

That in turn suggests that what’s ideal for me is to stick with exactly what I now have. The status quo has its inconveniences, such as water retention, but they can all be managed. Evidently, however, our oncologist anticipates a continued deterioration of the liver, presumably as a result of a continued growth of my cancer.

To stave that off as long as possible therefore becomes our next goal. Happily, there is something that can be done about this: the application of low-intensity radiation. High-intensity beams are too powerful and too dangerous, but low-intensity beams have been in use for a number of years and their capacity to slow, though not end, expansion of the cancer in the bones (and perhaps even in the liver itself – a point I want to ask more about) is evidently well-established.

One other point: I exaggerated a bit when I said that MSK took the view that there was nothing truly affirmative to be done. There is one treatment available which, though not very promising for patients with my kind of cancer (it wasn’t designed with this illness in mind), still could conceivably help and even help a lot: Keytruda. This is the drug that helped Jimmy Carter fight off brain cancer. MSK is comfortable with trying it because they feel they know very well what its potential downsides in the body are, and they’re mild. So they are quite confident that Keytruda won’t undermine what’s left of my liver functioning, and though it likely won’t improve matters either, it will succeed or fail without further weakening me.

The only problem with Keytruda is that it is very expensive – I think over $10,000 for each treatment, with the treatments every three weeks. Merck, which makes Keytruda, enables many potential patients to get around this problem by giving them access to the drug as a “compassionate use” under federal law; no doubt this is only partly an act of charity, while also serving as a way for Merck to continue gathering data on its drug, with a view to the widest possible use and sale of the medication. In any case, we and MSK have applied to receive the drug as a compassionate use. Decisionmaking at Merck this month has apparently been slow, for reasons no one outside the company is sure of, but we will continue to press the point.

There may be other possibilities, though with the difficulties my liver and kidneys now face I may not easily be able to qualify for most experimental trials. Even if I can qualify, we’ll have to determine whether these experiments make sense for me. For example, we’ve certainly considered the “CAR-T” experiment at the National Institutes of Health, a trial in which the patient’s immune system is more or less entirely removed, re-trained to focus on cholangiocarcinoma, and then returned to the patient’s body. The general sense Teresa and I have is that steps like these are a last resort, or no resort at all, because they do pose serious risks of danger to the patient – especially, we assume, one with a damaged liver already.

And meanwhile:

I plan to live the life I’ve lived, valuing and spending time with my family and friends. I also plan to continue the final steps in the work that I’ve had underway, the biography of my late South African friend Arthur Chaskalson, roughly since I received my diagnosis in 2015. I’ve often felt since I became ill that each day in itself is a wonderful thing. In recent months my sense of this has wobbled at times, so now I mean to remind myself, and to take joy in each remaining day. And if there turn out to be a lot of those remaining days, so much the better!

                                                                                                                 

One last report of our mid-January 2019 stay at MSK Urgent Care

One thing that’s not supposed to happen at the hospital is that the patient gets lost. Here I don't mean "lost" in what may count grammatically as a passive sense of that word: I always knew where I was during our latest stay. Instead I'm thinking of "lost" as an active verb: they forgot me and where I was! 

To be sure, it's really not so simple to prevent this. MSK is a big institution with a lot of people flowing through its hallways. No doubt because of this reality, they recently started an electronic tracking system, a wristband with some sort of electronic link, which I’ve used on each of my last two visits there, including the most recent on January 15, 2019.

We arrived around 3 AM that morning and I was connected at once to the tracking system. (My last post gave our arrival time as 2 AM, but that was wrong; Teresa tells me that 2 AM was when we left our house to go to MSK. If you caught this discrepancy, my hat is off to you!) But some hours later – I really don’t know the timing clearly, in part because I was being medicated – Teresa stopped by the Urgent Care front desk and asked when someone would be coming to check on me again. The person at the desk answered that they thought I’d already gone home.

This was not a good answer for us to hear. We’re not Urgent Care novices, so we’re familiar with the idea that its services can be slow. There is a lot going on. But it’s not good to just get lost. Aside from the fact that I was tired and ill, I was also definitely not at home, 15 miles away. Just as important, if I had left the hospital on my own, what was anyone doing about it? Shouldn’t someone have come to look for me? Wasn’t it a matter of concern that I had just up and left? Wasn’t that the very concern that the electronic tracking system was meant to counteract?

We didn’t leave the matter there. Teresa talked with other staff, one of whom, while also offering other reasons for what had happened, confirmed that the hospital had lost track of me. Another staff person told us that she was not questioning Teresa’s veracity, but of course this is the kind of language people use precisely when they are questioning someone else’s veracity. And we were at that moment in the very situation she was contending could not happen!

The hospital as a whole took the matter seriously and respectfully, however: we received a visit from an empathetic patient advocate, and the next day I spoke by phone with someone who I think was in charge of the nursing staff overall. A doctor we spoke with seemed dismayed too, but emphasized that issues like this are the domain of the nursing staff and not the medical staff – an interesting glimpse of how MSK is organized internally.

None of this makes MSK anything but an institution trying to serve its patients well. It doesn’t even directly alter how we as patients and caregivers should behave; it always seems wise to be vigilant, politely vigilant, when dealing with an institution like MSK, and that includes when trying to make sure the treatment I need comes when it should. But still it didn’t leave a good taste in our mouths.

The latest from MSK

Here's the latest -- a bit too action-packed, though also interesting from a sufficiently abstract perspective. Hopefully it's clarifying for you (and Teresa and me). 

So: as you may recall, I was admitted to MSK’s hospital on Thursday, December 27, and remained there until Monday, December 31. This hospitalization was fundamentally about the water retention in my feet, and to some extent throughout my body. The core question seemed to be how to balance the available treatment's impact on my liver with the impact on my kidneys; they sent me home when they felt they had a plan for doing just that.                                                                                                                

Unfortunately the next big event, which took place two weeks later, was another MSK hospitalization, or rather a prolonged stay at MSK’s Urgent Care: almost a hospitalization but not quite. The reason for this one was that I was suffering another of the partial – but very unpleasant – digestive blockages of which I’ve had 5 or more at various points in my treatment. This round began on Tuesday, January 15  2019; or to be more precise, it had begun late the previous night, around 11 PM on Monday, January 14. We hoped I would just feel better, as has happened in at least one of these rounds before, but I didn’t. So around 2 AM on the morning of Tuesday, January 15 we arrived at the Urgent Care Center, which is located in the same building as MSK’s hospital on NY’s East Side. We stayed there till around 5 PM on Tuesday, January 15, so I was in urgent care for well over 12 hours but never actually admitted as an inpatient. Why not? Well, one reason – the fact that the hospital staff lost track of where I was – needs an account all its own, which I hope to write later today. But I think the main reason I wasn’t admitted – aside from MSK’s complex logistics – was mainly that the treatment they gave me for the pain of the digestive blockage (intravenous morphine, available only in a hospital and definitely not at home) was effective.

There was another reason that I felt better: a reason Teresa has put together. This is that since what is happening is some sort of blockage, where tubes of my digestive system rub up against some other part of my digestion and get kinked up together, I will feel better if the kinked up strands can be made to loosen up and un-kink. The first evidence we had had of this theory’s validity came the night I was taken by ambulance to the Barnabas Hospital in New Jersey to be treated for an earlier blockage (perhaps the second one I’d had). By the time we reached the hospital, after a drive in which an EMT and I discussed my forthcoming biography of Arthur Chaskalson, I felt distinctly better. Teresa hoped – it was really her call, because I was in so much pain that I didn’t have much strength for making a choice in the early morning of January 15, 2019 -- that on January 15, the drive from home in the New Jersey suburbs to MSK would help. As far as I can remember (which is not too far!), it did.

We hoped that this theory came with a corollary: namely, that if the pain came from a blockage resulting from a temporary kinking, then it did not come from something permanent or semi-permanent, such as the renewed growth of my tumors. While we were at MSK on January 15, they did another X-ray and also an abdomen pelvis CT scan (back on December 11, 2018 they had done a “CT chest abdomen pelvis” scan). The January 15, 2019 scan showed continued cancer growth, but it is difficult to know how much weight to put in this reading, since different doctors with different amounts of time may reach different conclusions about what a scan says. But the urgent care doctor’s view is that the cancer could in fact be the cause of the latest digestive round.

Since I was discharged I’ve done my best – with Teresa’s careful support – to eat foods that won’t put any more stress on my digestive system than necessary. That’s not by any means easy, but since then the pain I’ve had has been manageable, and I’ve had no need for intervention against what doctors call “breakthrough pain.” I hope this continues!

And there is more to do as well. We’ll also be discussing treatment options again; these promise to be a major topic of conversation for an indefinite period. I will get an MRI of one suspicious area to see if it’s cancerous, early in the week; I may also get a "blood biopsy," meant to look for any "targetable" mutations in my tumors' genetic make-up that could be pursued with treatment. I also should receive, whether in a document or otherwise, my medical exemption from jury duty, which will remove that concern for two years. Later in the week we see the oncologist. She in turn has already agreed that it is appropriate for us to discuss matters with the radiation oncologist, whose high-dose approach over the summer was apparently both fatal for my liver tumors and quite a challenge for my liver’s condition overall, so we’ll be setting that up. And over the weekend we go to see … Hamilton! (I'll bet you didn't expect this paragraph to end with "Hamilton"; once again Teresa is the mastermind, having won a lottery giving her the opportunity to purchase tickets.)

And that’s the news.

Health dramas, some bigger than others

Well, I’ve had – Teresa and I have had – our share of health drama since Christmas. Some of what follows you may have already read about in my last post, but this one at least brings quite a bit of information together in one spot.

First we realized that my feet were retaining a lot of water. In fact, it gradually turned out that much of my body was retaining water. The hepatologist (liver specialist), into whose domain this fell, conclude that the pills I was taking at home to get rid of this water just weren’t enough; I needed to be inpatient. That meant it was time to return to MSK’s Hospital, to which I was admitted as an inpatient late on Thursday December 27. It also meant, or at least underlined, that we wouldn’t be able to see my son Brian or his sons in the remainder of their short stay in New Jersey – not least because their other in-laws, in central Jersey, were nursing the (infectious!) ailments of their various small children.

So in we go to MSK. When we get up it is now Friday, December 28, and it gets increasingly clear that MSK is in no position to do a lot of aggressive care -- unless it's required urgently, in which case they are unstinting as ever -- over the weekend leading up to New Year’s Day on Tuesday, January 1. So we see a number of talented young doctors, who have more than one theory of what might be wrong (the most alarming, quickly disspelled, being congestive heart failure – don’t worry, I don’t have it!). Meanwhile everyone watched my water levels and I took intravenous diuretic (anti-water) medication. And Teresa slept each night in a singularly uncomfortable looking extend-out chair. Eventually the doctors decide that they think I’m getting better, though the blood test work attesting to this doesn't strike me as really that clearcut. By New Year's Day the action heats up; the senior doctors were back on the ward and more decisions could be made. One was to send me home, which they did. Fortunately we  had time to receive, before we left for home, a couple of very nice visits from friends who made the trip from Montclair or elsewhere in New York to say hello.

Of the personal saga of this hospitalization I won’t say much, though I mentioned discussing this side of things back in my previous post. So I won’t discuss the friendly Italian-American family across the bedroom curtain from us one night, except to say we liked them. And I won’t discuss the patient who was moved into the empty half of my room (on the other side of that curtain), and immediately turned out to have a very infectious disease producing rapid bouts of incontinence, except to say we wish him well and are grateful to MSK for very quickly getting Teresa and me to a safer room. And I also won’t take up the moment one afternoon when I woke from a nap – my most frequent activity, it seemed -- and heard two men in conversation, and gradually realized that one was the patient now on the other side of my curtain and the other was a priest taking his confession. Of what he confessed to, and for that matter of what the deacon asked, I’ll say no more, and hope that in doing so I am honoring religious and patient confidentiality.

Back at home two major developments take place. The first (which may have actually gotten started even before I returned to the hospital) is my entry, with Teresa's guidance, into the fashionista world: you know, the one in which young people, starting in 2002, wore Crock’s rubber shoes with holes in them. Putting the crocks on over socks, you wind up with polka dot feet. I mean, how cool is that?

You can get a view of them in one of the three images attached.  This is, actually, a big deal, because it marked the first time in some while that I’d been able to put shoes all the way on my feet and so wear shoes, any shoes, without causing more damage to my feet. Thank you, Teresa!

The second major development is that my feet, and the whole water issue, get better. It’s not quite fully resolved, but Teresa also gave me during-the-swelling and after-the-swelling photos which show pretty clearly how big a change took place. I appear to have shed about 20 pounds of water, with more still departing. It’s unnerving to see such a transformation take place, and all the more so because I don’t think the MSK physicians understand even now exactly which one of the liver's 400 functions had gone wrong or what has now gone right – but they seem to have found the missing link, and that is really good.

So we’ve been home for a week, since Tuesday, January 1. I still have very little energy – though Teresa has also gotten me a pair of bike pedals (which can be used  to push with your feet or your arms)  and I’m hoping that will help me get more exercise even on cold days. (If you ask me, there’ve been a lot of cold days lately, but my thinking that's so may be yet another liver symptom!). All this is enough for me to start focusing on my book a little more, and I have, though there are many MSK appointments in our future too, including three in the next two days.

Many thanks to everyone who’s been in touch; all your warm messages are very much appreciated.

And here, for the sake of science, are two more pictures. I can't figure out how to provide a spoiler alert here, so I'll just say: my feet in the first of these two photos are not very pretty!

During swelling: 

After swelling: