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: 

Medical update as of the end of 2018

So as you may already know I’m back in the hospital at Sloan Kettering again; Teresa and I have been here since late in the evening on Thursday, December 27. It wasn’t a perfect time to be admitted to the hospital: we’d missed an important consultation with our oncologist because she was ill, and now a lot of people seemed to be on their way to vacation. But it was the time we needed to come in. We have two big issues to deal with, plus the complication that it’s unclear whether these two issues are actually related, and, if so, how. None of these add up to a crisis, but they do require attention. Some of what we’ve learned may be confusing to you, and it certainly still confuses me, so in an effort to be as clear as possible here’s an end-of-the-year medical update.

The first issues deal with the recurrence of the cancer, which I discussed at length in my previous post. These are mainly in the liver; there is a possible spot on my iliac (pelvic) bone too, but a senior physician from the National Institutes of Health (long-time friend of the organizer of my “dads’ dinner” group in Montclair!) said that if I didn’t feel any symptoms from this – and I don’t – I shouldn’t worry about it.

The question, in any event, is what to do about these spots of cancer. One possibility is more radiation, since many or all of these spots were not irradiated in the summer (because there was no activity there to be attacked). Another possibility is more chemotherapy, on the basis that even though my entire liver, and in fact my entire body, has received chemotherapy over the past three years, in many spots no tumors ever did appear, so in those spots – which may include the current instances of new growth – chemotherapy may actually have been successful up till now. The fact that the tumors have started growing does not disprove this idea, because I haven’t had any chemo treatment since the spring, and at that point these spots didn’t appear to be cancerous; the new growth may simply be the result of non-use of treatment over the past half a year.

Or there are two further alternatives. One is to do nothing, as the NIH physician suggested for my iliac bone spot. If the likely symptoms are slow-moving and low-intensity, this may actually make more sense than more dramatic interventions. It’s always possible that the side-effects will be more severe than the cancer effects themselves, and this is another reason for caution. I think my oncologist may lean in this direction.

But the other is roughly the opposite: to try to become part of an experimental clinical trial. The fact is that in my case this would not be a tremendously radical step, at least in the eyes of the NIH physician we talked to talked to today; he felt that my radiation treatment this summer was a pretty radical step itself. To be sure, as a surgeon, he may start from a certain skepticism towards radiation as an alternative approach. But he concurred with our MSK doctor in being interested in a broadly-targeted immunotherapy drug called Keytruda, and he also described a dramatic treatment NIH has had some success with, in which the patient’s immune system is completely broken down and then completely re-constructed, with a view to creating a set of immune cells that would take on and take down my particular, individual cancer.

All of that deals with the “first issues.” The second issue has to do with the various ways my liver functioning has been impaired. It turns out that virtually anything the body does, the liver may be involved with, not necessarily as a whole cause but as a contributing factor. So, for example, my ability to do multi-figure subtraction, which seems to have lessened, could be an effect of liver malfunction leading to ammonia in the brain; for that there is a medication I am taking vigorously every day. I’ve felt myself growing more impatient than I (hope I) usually am: liver again. And the retention of water in my feet – really quite a lot of water, and probably affecting my balance and if unchecked then generating bruising of the feet, which was the symptom that probably tipped the balance in favor of our coming in to the hospital: liver too.

But since my hospitalization at MSK began a few days ago, we’ve encountered other theories about the water retention. One theory was that I had congestive heart failure, in which the heart and/or the lungs are unable to do the work involved in pushing water through the circulatory system and out. But they’ve done fresh testing of both my heart and lungs and I don’t have congestive heart failure. Another theory is that there is some sort of a block to the flow of liquid, conceivably a tumor that they haven’t yet been able to find on a scan, conceivably a clot. They did a scan looking for clots in my abdomen early in my stay here; it didn’t show anything but that they thought might be attributable to difficulties in the ultrasound process making these hypothetical clots hard to see. But then this afternoon one of the doctors said that a blockage of the flow of liquid would require a really big clot, that they hadn’t found such a clot in my previous CT scan with contrast, done on December 11 2018 or just under three weeks ago, and that the chance that a clot of the necessary size had developed since then that would account for my worsening water reduction was small – and so, in short, that the cause of the water retention probably is not a clot (logic that I think applies to the possibility of a new tumor too).

So it seems possible that the water retention – though in some unspecified sense due to the liver’s damage in the course of the radiation and other treatment it has had – is not related to any physical structure created in the process. I evidently have renewed cancerous activity (see “the first issues” above), but that doesn’t seem to be the direct cause of my fluid retention. Meanwhile they’re contemplating at least two further scans to try to get to the bottom of my various symptoms, and still trying to treat the fluid retention as a symptom of its own, which can be alleviated better at the hospital than at home because the hospital can give me intravenous Lasix, (a diuretic, or in other words an anti-fluid-retention drug). And of course the hospital can play close attention – good-willed but sometimes maddeningly close attention – to my overall condition.

The personal tale of my hospital saga may deserve a separate post. Fortunately, Teresa knows better than I do what’s going on for me medically, and keeps a careful monitoring eye on my day-to-day experience here. So besides a lot of medical thought and effort, there’s a lot of monitoring of the monitors under way. Speaking as the patient (and I know Teresa feels the same way as the caregiver), I do find it rather exhausting! With luck, though, we’ll be home, with a plan, soon.

Holiday wishes to all of you!

Latest news -- back to the fight

Teresa and I spent yesterday at Memorial Sloan Kettering. Unfortunately we didn't come home with news as good as we had gotten from other recent sessions there.

The short version is this: they found from a CT scan on Tuesday, December 11, 2018 that a few tumors in my liver which had been quiet have now woken up and grown a little (roughly a centimeter in each case). Meanwhile a very small lesion in my iliac bone (a “lesion” is a damaged area, and the iliac is the largest bone of the pelvis), which they’ve been aware of but have never seen any clear indication of malignancy from, has also grown a little, which raises a substantial possibility that this is a metastasis (a spread) outside the liver.

What to do? Well, we intend to fight the disease, which is the strategy that has served us pretty well up to now. But it’s harder, because we’ve already used most or all of the proven strategies. (Though perhaps not all; we may talk with the doctor who administered the radiation this summer, for instance, in case he sees something our oncologist – who was out during our appointment yesterday with a respiratory illness, so we only really dealt with her nurses – did not.) Assuming we’ve tried everything proven that Sloan Kettering offers, we might actually sit tight, not getting treatment. This would not be because we’re giving up, but rather because if the tumors in question are growing relatively slowly, then for my case (somewhat as in many cases of men with prostate cancer) it can actually make sense to be equally patient – while we wait for researchers and clinicians to invent the next treatment that really works.

Or we may try experimental treatment ourselves. Experiments, in the form of clinical trials, are the process by which those treatments that really work are found and developed. Getting a treatment that is currently unproven won't accomplish much if it turns out the treatment really doesn't work. But joining the trial means that you potentially get access to the latest possible approaches earlier than other people do, and if they work you get your treatment before most of the world. 

One especially attractive example of this would be the drug Keytruda, which you might remember successfully pushed back Jimmy Carter’s brain cancer. Keytruda is an immunotherapy drug, and it helps to have the right mutations for Keytruda and other similar immunotherapy drugs to target. So far it doesn’t seem that I have any particularly “targetable” or “actionable” mutations. But some people benefit from these drugs even without having the mutations at which they were originally aimed. The biggest problem with Keytruda, aside from the fact that it certainly doesn’t always work, is that it is expensive, unless they (Merck is the manufacturer) give it to you as a compassionate gesture. That they often do, and we applied for it yesterday.

A second place for experimental treatment is in other treatments being tried inside Sloan Kettering itself. MSK evidently has two sets of first-round (i.e. very tentative) clinical trials going on. One set involves immunotherapy (that is, treatment aimed -- like Keytruda -- at the targetable mutations that I seem to be short of, but that perhaps aren’t essential to the success of treatment). The second set involves, I guess, other  experiments. It looks like we’ll be finding out more about these in the next two or three weeks.

The third place for experimental treatment is, as you’d guess, in other treatments besides Keytruda that are being developed outside Sloan Kettering. Different institutions are running their own trials. There’s a possibly promising one at M.D. Anderson in Houston; another at the National Institutes of Health in DC; and Teresa is applying her formidable web research skills to locating others that show some promise.  

So that’s the situation. I intend to work hard on finishing the 400,000 word version of my book (and if I can also produce a shorter version, more suitable for trade publication, so much the better); look forward to spending time with family and friends; and, as I said, Teresa and I plan to keep on fighting.  

Three years in and still going strong

Today, November 25, is the third anniversary of my receiving the diagnosis of cholangiocarcinoma. The actual diagnosis was not the first sign that I had cancer; in fact, tests had already made that clear. But the last round of testing convinced the doctors that the particular kind of cancer I had was bile duct cancer, a/k/a cholangiocarcinoma, and that’s what I’ve been treated for ever since.

And here I am, three years in and still going strong. The doctors believe that the radiation treatment I had this summer either killed or knocked out of action all my remaining tumors. Based on that, my oncologist told us this month that she was completely comfortable with my not having another scan until January – and that in turn points to her feeling that there would be nothing for a scan to find. Hopefully the scan in January will confirm this, and that would be really good news. But if what it shows is that something has returned, and if that something can in turn be hit by another round of radiation, that will be good too. 

The only downside, which I’ve written about already, is the side effects. I’ve got several, none terrible but all a bit of a bother. I’m tired a lot, and my energy for things like a regular daily walk has declined, as has my walking speed. I’m retaining water, though fortunately not too much; to deal with this, however, requires medicine that in turn can affect other parts of me (basically, the balance seems to be between my liver and my kidneys), so the doctors are doing their best to give me just the right amounts. And the side-effect that may puzzle the doctors the most is that I have cramping in my hands and legs. This one doesn’t seem to have a single cause; it’s evidence, I think, that the body is a complex apparatus and multiple factors can coincide in a particular effect, happily again not that severe. But the odd result of all this is that although fundamentally I’m clearly healthier – no active cancer! There’s a result I didn’t count on three years ago – in these various more superficial ways I don’t feel that great. 

All that said, however, here I am. Last night I woke up at 4 AM feeling nauseous, but a single pill did the job on that symptom. And today Teresa has spent making meat pies (with the inspiration of the British Bake Off show, which we both have been watching), and we will try these home made meat pies tonight. (We had one and it was great!) It is good to be here to get to sample this pleasure. 

While not eating pie or taking a nap to catch up on my sleep I’ve also been making revisions to my book; there is always more to do, and I’m still involved in complex dealings with potential publishers, but today I completed one set of reader’s comments, and so this day marked a writing milestone too. I hope the book will actually be published around mid-2019. If and when that’s done then I will face the interesting question of what to do next. One particularly intriguing possibility is that I write manuals for cholangiocarcinoma patients on the law governing their health insurance, a topic that turns out to have many pitfalls which can confuse a lawyer, e.g. me, and no doubt frustrate a non-lawyer even more completely. Or, of course, there’s the possibility of a European river cruise. Or other places to travel and books to read. I’m looking forward to the chance to choose. The world has so much going on in it! 

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!