Tuesday, September 27, 2016

Home again!

I'm free! I was discharged yesterday and Teresa and I got home in time to watch the Clinton-Trump debate yesterday evening. 

The cellulitis is slowly dissipating, and on Sunday (two days ago) they transitioned me from intravenous antibiotics to two oral antibiotics. I'll be taking those for a full course, to next Wednesday, meanwhile seeing the oncologist tomorrow and the surgeon both tomorrow and next Wednesday, so that they can monitor my progress.

The best news is that the oncologist has me scheduled to have chemotherapy loaded into the pump tomorrow. Since the whole point of the surgery and of the treatment of the cellulitis was to enable me to continue to get the pump chemotherapy, I'm looking forward to it.

Meanwhile I'm tremendously grateful to the caring staff at the Memorial Sloan Kettering hospital, who not only looked after me for 10 days but also helped me get a birthday cake for Teresa along the way!

Friday, September 23, 2016

Hospital daze

I’ve been back on the 16th floor of Memorial Sloan Kettering’s hospital since Saturday, dealing with complications – a skin infection, cellulitis – from my surgery 6 weeks ago. The latest word from my surgeon is that I’m likely to go home on Tuesday – so I’ll have been here for 10 days, more than twice my stay as I was recovering from the surgery itself. I’m grateful for the dedicated care I’ve received; this skin infection has to be beaten, and everyone is working hard to do just that.

Meanwhile, though, I’m in residence on the 16th floor. The main difference for me between this stay and my first one is that I’m in much better health. Last time I was preoccupied with recovering from painful and exhausting surgery; now I basically feel okay, even though I have a post-surgical complication that must be attended to.

The result is that I’ve been able to pay more attention to hospital life. Many people have written about hospital stays, but at the moment it feels to me like one of those topics that never grow old. So here’s some of what I’ve seen:

·          While I’ve been recovering from the surgery, I’ve read a couple of memoirs of detention without trial, incommunicado, in the early 1960s in South Africa: Ruth First’s 117 Days (very good) and Albie Sachs’ The Jail Diary of Albie Sachs (even better). Just to be clear, I don’t feel like I’m in detention without trial. For starters, I’m not detained against my will, though it is true that if I announced I wanted to leave the hospital would try hard to dissuade me, and presumably would require me to sign something saying I was leaving against medical advice. (Which I have no intention of doing!) In this and many other respects, these books are a reminder that life could be a lot worse. That said, there are some similarities in the way life works in a hospital and in a prison. The prisoner in solitary lives his or her entire life by the prison schedule: breakfast is at one time, exercise is at another, the only chance to see other prisoners at yet another. Something of the same is true in a hospital: the nurses arrive periodically to take your vital signs, even if you’re sound asleep; the doctors’ arrival, much less frequent, is a matter of great moment; taking a shower is a significant accomplishment. And I’m tired out by 10, while the morning routine begins by 6 – truly, early to bed and early to rise.

·          Getting exercise: as part of recovering from surgery, I need to walk. So do the patients on the floor who have just had their surgeries. The difference is that I’m in good enough shape that I can basically walk along at a normal walking pace, while they’re moving very slowly and carefully. I remember how they felt, and I know they will feel better surprisingly quickly – but meanwhile I’m ludicrously faster than they are. I try to explain, so as not to discourage them, but that involves telling my whole story, and that’s perhaps more story than any of us are really interested in. So I keep walking, usually hand-in-hand with Teresa, but I feel bad for the other patients around me!

·          Meanwhile, we’ve been told that 14 laps of the 16th floor equals a mile. Actually, we were first told that 12 laps made a mile, but now we’ve upgraded, a bit grudgingly, to the 14-lap miles. Teresa and I try to do 3 miles a day. Last night we had two miles still undone, and so we walked 28 laps more or less nonstop – or 29, since I think we lost count at the end. The problem with this is that the hallway is just not that scenic. It’s a perfectly nice hospital hallway, but when you’ve seen it five times or so, you’ve really seen about as much as you’re likely to. I used to run on running machines, though not on a daily basis – as I’m now walking the halls – and I thought the little dots moving across the running machine screen were more interesting to look at than the hallways here!

·          But one thing is very interesting: the people. Perhaps especially with the old and infirm patients, who don’t get out to the halls very much, their families gather. They’re not having a great time; we can see the strain they’re under. Not surprisingly, most of them are too preoccupied to be interested in a lot of cross-cultural communication, but it’s easy to see that they come from a lot of places and backgrounds, here in the New York area and around the world. We share a mutual consideration for each other’s difficult situations, though it’s manifested just in smiles or in our accommodating each other as Teresa and I pass by the groups of family along the way. Many of these visitors don’t look rich at all; my impression is that the patients who are being treated on the 16th floor are more diverse, at least economically and maybe ethnically, than the ones treated in the chemotherapy suite that I hope to resume visiting soon.

·          Some of everything seems to happen on this floor. My first roommate on this stay was an older man who grew very angry with the staff and didn’t hesitate to let them know it; I got transferred to another room just so I wouldn’t have to listen to his rage through the curtain that divided our room. The last couple of nights there’s been someone on the floor who appears to be under guard: nothing so indiscrete as a gun has appeared, but someone from hospital security has sat in a chair outside this person’s room all the time. And a couple of days ago there was a traffic jam in the hallway, caused by a patient who was struggling along with the help of a large walker, accompanied by one person with a wheelchair and another walking alongside him; as far as I could tell, he actually wasn’t meant to be walking at all at that point, and eventually nurses, with a security person in the background, guided him to his room.

·          The food: It’s not bad. But in the days immediately after surgery, when I couldn’t eat much at all, I liked what I could eat better. Now, fortunately, most days Teresa goes out to get us a meal. Oddly enough, down on ground level, here on the Upper East Side, there’s quite a lot of good food to be found – and not that expensive either. So my hospital stay has included Thai, Indian, and Greek meals as well as pizza. Tough life!

·          Roommates: with the one exception I mentioned earlier, all of my roommates have been fine. But having a roommate is still a bit startling. All that divides my space (which I share with Teresa, who’s been sleeping on a bedchair that she says is much less uncomfortable than she feared) from my roommate’s space is a curtain. Anything any of us say in a normal tone of voice is audible through the curtain. If I watch a TV show (there are flat screen TVs, with a decent set of channels), they hear what I hear. I also know a lot about their medical conditions, and a good deal about their lives – as they no doubt know about mine. But there’s no alternative short of paying for a private room, and I don’t aspire to that. I’ve come to believe that it’s worth the money to get an upgraded airline seat, because that actually makes your overall experience much better, but I’m afraid that even in a private room – no doubt very expensive – the basic reality of hospital life would remain about the same. Since there’s no good alternative there’s nothing to be done but to accept this mutual loss of privacy.

·          Nurses, and other staff: A friend of mine said the other day, when I complained about a chemotherapy session starting 3 ½ hours late, that a really large number of people’s actions have to take place, and in the right order, to achieve a result like the arrival of medication ready to be administered. That’s even truer of a hospital floor. There are a lot of staff here. There’s an IV team responsible for putting in intravenous lines. There are people responsible for taking vital signs (blood pressure, heart rate, temperature) several times a day. Someone pushes a scale around the floor, weighing each of the patients. There are people who set up the showers (rather small and awkward in design) for patients to use them, and who make your bed while you’re showering. There are people who collect the trash. Other people – dressed as waiters – deliver the food and pick it up when you’re done. One man comes by every morning to see if you want a newspaper. A couple of chaplains make the rounds. The staff of the recreation center on the 15th floor stop by to encourage you to come to their programs; the people who run the therapy dog program ask if you want to see that day’s doggie.

·          And there are the nurses themselves, who are really in charge of your daily experience. They are medical professionals; they hear your symptoms and examine your body. They also work hard; the basic shift appears to be 12 hours (3 days x 12 hours), but we’ve seen at least one or two of the nurses still at work well after the shift change time. Beyond all of these people are nurse practitioners, who seem to stay on the floor but who may play more general supervisory roles than the nurses. Then there are the doctors – unlike most of the people I’ve just mentioned, many or most of the doctors are men, and they exercise a lot of authority, but they’re not actually around very much at all. (I don’t mean the doctors are inattentive; as a surgery patient with an infection, I’ve been visited regularly by both infectious disease physicians and the surgical team, and they’ve been warm and careful. But most of them don’t stay on the floor for very long.) The bulk of the work of keeping this floor running and its patients in good condition is being done by the rest of the staff, and most of them are women. By and large they are not only skillful but also friendly and cheerful – which can’t be easy.

·          The recreation center: discovering this center has been the biggest lifestyle improvement of my stay. I admit I was hesitant to journey all the way from the 16th floor down to the 15th floor to check the recreation center out, but Teresa suggested it and with relatively little resistance (in my opinion, at least) I made the journey. It’s paradise! That is, it has tables and chairs and space, including a small patio that’s outdoors – the only place where I can experience the outside world, unless Teresa and I sneak out for a meal. We haven’t done that yet, and we’re not supposed to, though it is tempting! Again, I’m not in anything like a prison, but I remember the jail memoirs’ emphasis on the precious moments of outdoor exercise. Anyway, as I was saying, the recreation room also has cookies (though it took me several days to figure out exactly when the relatively limited number of cookies appear – today Teresa and I got it right!); books (I borrowed a 4-volume set of Nero Wolfe detective novels and very much liked the borrowing policy: if you want a book, borrow it and then bring it back, or don’t – so generous that I think I must find a few books at home that might please future patients); a pool table; games and crossword puzzles; and programs. The programs include blackjack and poker, but those I’ve been to featured songs and music, sometimes with another layer: I enjoyed a session on “music and mindfulness,” which was offered by a person from MSK’s integrative medicine department. (This department seems to cover basically every healthful thing except Western medicine, including herbal remedies, yoga, meditation, acupuncture, aromatherapy and music.) I suppose part of what makes this room so pleasant is simply that it is unlike most of the hospital experience – but it is certainly a great break from the 16th floor routine. I’m writing this post at a table in the center, with the sun shining in and a nice view of nearby Manhattan.

·          My journey to the second floor: This eye-opening journey took place on the last day of my first hospitalization. By then I’d adapted to life on the 16th floor; I didn’t feel very well – since I’d just had surgery – but I knew what I needed to do each day, and I knew that the staff on the 16th floor would provide caring support for me throughout the day. Then I went to the second floor, for a test of the pump that the surgery had installed. The purpose of the test was to make sure that when material flowed from the pump, it arrived at, and only at, my liver. Testing this is a high-tech proposition, involving the use of substances (I think they were radioactive, but I’m not sure) that would show up on a scan. I never quite caught the names of the scanning machines, but they seemed to be even higher-tech than, say, CT scans or MRIs, and one of the staff members said that the machine she supervised had cost a million and a half dollars (or was it two and a half? Anyway, real money.) So I’m transported down from the 16th floor to the 2nd floor, home of these machines (in the nuclear medicine department), on a stretcher. And then I waited, on that stretcher, in the hallway for about half an hour past the appointment time, until someone from the nuclear medicine staff noticed me. No one was rude, and from then on things proceeded pretty smoothly, but I felt that this was the first time since I’d reached the 16th floor that I was in the care of people for whom taking care of patients was not the primary concern.

·          Along the way, a staff member of (I guess) Germanic origin said something to me on the lines of “Now vill you open your stomach.” She really did pronounce “will” as “vill.” I could have objected, or questioned what she meant, or (as I worked out afterwards) said something like “I’ve just had my stomach opened up by professionals.” But, fortunately, I just raised my shirt so she could see my incisions, and we continued with the test – and she was in fact supportive as this went along, though it was clear that she felt quite proprietary about her gigantic scanner.

·          Being alone: This isn’t a place where it would be easy to be alone. Luckily for me, I’m not. Teresa is here most days, and most nights. (She’s able to do some work, and is doing it right now here in the recreation center with me – but this is still a huge disruption in her life. Thank you, dear Teresa!) Phone calls and texts from my sisters and my children make a big difference too, and emails from friends also matter. I can imagine being here basically alone, because I’ve seen people who are doing exactly that. But it must be hard.

Tuesday, September 20, 2016

A complication

This past Saturday morning, September 17, Teresa put a new bandage on my central incision. She'd been carefully packing a small wound that had opened up here, and we were both pleased that the wound had in fact sealed itself - just as the doctors had told us it would.

But then she noticed a new development in the other incision - the one on the left side of my abdomen, through which the pump was inserted. Now the area around that incision was red, seemed warm, and maybe was swollen too. That was enough to make us decide we had to "call it in" to the surgeon's office. We did, and they told us to come in to urgent care at the Memorial Sloan Kettering hospital in NYC.

The upshot: They hospitalized me, and this afternoon (Tuesday, September 20) the surgeon told me I might need to remain here for another week! I'm on the same floor where I stayed after the surgery 5 weeks ago, and it looks like I will wind up being here longer this time than for the surgery itself.

Why? They've concluded I have cellulitis, an infection of the cells in the area of the incision. What concerns them is that I have, as someone said, "hardware" - the pump - just underneath this skin. Bacteria evidently like hardware - like piers for barnacles, I guess - but I definitely don't want to give them an internal haven. So I'm in the hospital to receive intravenous antibiotics, which they expect will successfully knock out this infection.

Exactly why this has happened is hard to say. Infections like this evidently occur in 5 % of these surgeries - but mine is especially unusual because it didn't start till 5 weeks after the surgery. Last Wednesday, three days before we noticed this problem, I'd been at MSK for chemotherapy. I received an infusion of a drug called gemcitabine intravenously; could it have weakened my resistance to infection? Wednesday also concluded my first two weeks of chemotherapy through the pump, and that meant that nurses drained the remaining chemo from the pump and then loaded it with saline solution and heparin (an anti-coagulant). But this didn't go perfectly; the rather long needle went in to my skin and into the pump beneath, but initially it didn't bring anything out, and two nurses worked to get the needle to exactly the right place. Did something in this process cause my infection? We don't know.

Meanwhile of course I had a bunch of tests, including a CT scan. The CT scan showed I didn't have accumulation of fluid - and that's good. In fact, I don’t really have any signs of infection, except for the skin redness that Teresa first noticed, and I feel just about the same as I’d been feeling during the week before she noticed it – in other words, not bad. The CT scan also showed some contraction of the tumors, presumably the effect of the first dose of the pump chemotherapy - and that's good too. Meanwhile the healthy parts of my liver seem to be handling the impact of the chemotherapy reasonably well - also good. If I weren’t in the hospital, I’d say everything was going all right!

What's oddest about being back is that in day to day terms I may be the healthiest patient on the floor. Many or most of my companions are recovering from surgery - but I already did that. So when Teresa and I go for walks (12 laps is a mile, or so we were told by one nurse 5 weeks ago), we zoom by all the other patients, because they’re still recovering from one invasive procedure or another. I on the other hand am fine (except not quite).

One other thing is very odd: while Teresa and I waited on Saturday evening in urgent care, another quite different situation was playing out on the streets of New York a few miles away - a bomb blast on a popular street on a Saturday night. For a lot of people, that was their emergency, and a very frightening one; ours was in the hospital uptown, and our first responders were the nurses and doctors who are now taking care of me.