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.

High excitement

Two Sundays ago, March 25, I was at home working on my biography when my stomach began to hurt in a familiar way. I tried to stave it off by taking a pain pill and sleeping through much of the afternoon. But around 6:00 PM it grew worse and became a full-scale episode of what I’d been calling digestive cramping. What that meant was acute pain; then a lot of vomiting; and trips to the bathroom as I tried to empty myself out. But my stomach remained huge, or so it seemed to me, and increasingly painful even as there was less and less inside of me. It seemed as if this time the waves of pain were crashing on each other with no let-up, and the whole episode was going on longer than any previous round. Meanwhile my body got cold and Teresa tells me my skin lost its color. It seemed to get harder for me to focus on simple questions.

Eventually we decided to drive to a nearby hospital, Barnabas (not St. Barnabas anymore, as a result of some permutation of the health care industry). Another option would have been to drive to Memorial Sloan Kettering in New York, but I couldn’t see how I could handle that long a drive. Even the 20-minute drive to Barnabas at 2 AM (by now it was Monday, March 26) seemed very hard, and was. But we got there, went in, and they immediately started taking care of me well. Intravenous morphine brought the pain under control, which was crucial. IV fluids helped get me hydrated again.

The last time we’d been at Barnabas – for another of these incidents – we resisted having X-rays on the theory that I was getting plenty of diagnosis, not to mention radiation, from Memorial Sloan Kettering. This time we were in no mood to be standoffish, and so we agreed to Barnabas’ doing a CT scan, which showed that I appeared to have an intestinal blockage. At this point Teresa and I felt I should get transferred to New York to MSK, but meanwhile the Barnabas people proposed inserting a nasogastric tube to drain my stomach. Again it seemed best to get things started, and so we did.

Inserting a nasogastric tube means that a nurse slides a tube up a nostril and down the back of your throat into your stomach. Meanwhile you drink water through a straw as fast as you can, perhaps partly to ease the tube’s passage down your throat and partly to distract you. The tube got in, but I wasn’t completely distracted and vomited again. From then on this tube was in my throat, feeling very awkward and uncomfortable and sometimes making me want to be sick again, and also abrading my throat. But it stayed in, and stuff kept coming up, pulled by suction through the tube.

At about this point – by now we’re around 11 AM on Monday morning – the ambulance took me to MSK. One great advantage of coming by pre-arranged transfer from another hospital was that I was put in a room in MSK Urgent Care almost at once, which gave Teresa and me a chance to sleep. Another was that my admission to MSK’s hospital also seemed to be a settled matter, and later that day I found myself back on floor 16, where I’d been hospitalized three times before.

Four days later, on Friday, March 30, I was discharged in the late afternoon. What happened at MSK was that I was once again under the care of the surgeon who originally put the intrahepatic pump into me back in August 2016, probably because the likeliest reason for this digestive blockage is scar tissue resulting from that surgery. The surgeon freed me from the nasogastric tube quite early on; that in itself made me feel better. Then what followed was a process of slowly restarting my digestive system: a day of no food, a day or two of clear liquids, a day of non-clear liquids and finally, on Friday, a meal and a half of regular food. What was odd about all this was that basically as soon as the nasogastric tube was removed, I felt more or less okay; as had happened before, I became the healthiest person on the floor, even though I had a real reason to be there. One day I walked four miles (56 laps) around and around the floor; meanwhile other patients who were struggling to walk a couple of laps after surgery the previous day were looking at me enviously. I felt bad for them, because I didn’t have a problem walking; I just had a digestive system that was slowly restarting. Anyway, it did restart, and though I didn’t feel perfect when I left the hospital on Friday, I did feel I was back somewhere near my pre-blockage baseline – and I’ve been doing all right at home since then.

As to actually being in the hospital: I didn’t have much privacy (most of MSK’s rooms are doubles, with the patients separated only by a curtain), didn’t feel perfect, and was certainly bored, but it could have been much worse. Teresa came to see me for much of every day, despite having plenty of other stuff she had to handle at the same time. She didn’t stay the night, as she had on past stays, because my roommate was having a pretty hard time and we didn’t want to add to his burdens. But we had fun together; we figured out how to share a pair of headphones and watch the Spanish TV series we’re currently enjoying on Netflix without bothering anyone. Teresa also brought me lots of research materials for my book so that I could continue reading. I imagine that there have never been as many decisions of South Africa’s Constitutional Court in an MSK patient room as there were in my room last week, and I did read a number of them – and talked with a couple of the nurses about the biography I’m writing. I was impressed by the skill, and also the good cheer, of everyone I dealt with from MSK. And on Friday my daughter-in-law and my two grandsons came to see me, an unexpected treat; we played poker and shot pool in the patient recreation room, and they got their first sight of me in full patient mode. (Fortunately, not including the nasogastric tube.)

Now I need to be as careful as I can to avoid further rounds of this. Last Sunday’s experience was, I think, my fifth round, and in hindsight it seems to me that the previous four must also have been digestive blockages. Fortunately, all of them resolved without steps as substantial as a nasogastric tube. But now I understand the idea of digestive blockage a lot better: like the various other systems in the body, the digestion just has to work. If it gets blocked, you’re in trouble, potentially enough trouble to require surgery. So my diet may have to change: it may be time to say goodbye to spicy foods, which I will miss; it’s definitely time to say goodbye to large meals, and hello to smaller and more frequent ones; and I have to get advice about whether there are supplements or foods that I should add. The latest word -- for now I should follow a "low-residue diet," which aims to omit anything prone to becoming a blockage-causing residue on its way through. All will be worth it to block these blockages!