A new treatment

Over the past couple of days, Brad has been feeling about the same, with a few small improvements—his skin continues to do a bit better and his eyes are less painful, but his GI symptoms continue—but today we got some news about new treatment options. Last night he had his new lenses inserted in his eyes. These are the prokera rings, which consist of a ring holding a small circle of amniotic membrane, which will apparently bond with and heal the damaged surface of his eyes. For right now he can hardly see anything, as the lens makes things very blurry, but we are told that will improve. He also says that they were quite uncomfortable at first, as they are bulkier than standard contact lenses. Truth be told, they also make his eyes look really odd (the irises look much bigger), but we will all get used to them, him especially, and it’s great that this option for a noninvasive treatment was available and was implemented so quickly.

The really stubborn ailment continues to be his GI tract GVHD (graft vs host disease), which is continuing to be painful and miserable. He’s now nearly two weeks in with that and despite being on very powerful immune suppressants and antidiarrheals, this form of GVHD is proving stubborn. Up until today, the only other line of defense we had heard about was giving him a tincture of opium, a measure that certainly sounded interesting, if a little olden-timey. But I was concerned about it making him even sleepier and more muddled than he already is, thanks to his painkillers.

Today, however, we learned that the medical team has a different trick up its sleeve: something called photopheresis. In this, some of his blood (about a liter an a half per treatment) will be removed from his body, with the white blood cells separated out, treated with a photosensitizing agent, and then irradiated. This slowly kills the T-cells of the new graft, providing a further immunosuppressive effect in addition to the immune suppression Brad is already receiving via drugs. The theory is that the slower-moving, impaired T-cells will thus be less likely to attack Brad’s gut, thus ameliorating the graft vs. host disease. Interestingly, this treatment was initially approved by the FDA for treating precisely the sort of rare cancer (cutaneous T-cell lymphoma) that Brad had. But the procedure is now used frequently for graft vs host disease. He will remain on the two immune suppressant medications, so they are throwing a lot of big guns at the problem.

The treatment itself shouldn’t cause a lot of side effects, and if it works well it can be done on an outpatient basis after Brad comes home—though that day seems like a very long time from now. He will have four weeks of twice weekly treatments. Brad was unhappy to learn that he will need a new (and bigger) kind of catheter, because the Hickman line he got for his transplant is not big enough for the procedure to be done efficiently. Venous catheters and their placement have been his least favorite part of all of his cancer treatment—but his anticipation has in each case been worse than the actual placement, so I hope this one will be the same.

We have been cautioned that progress with photopheresis is usually slow, so we can’t expect a quick turnaround on the GVHD. But at this point any real turnaround at all would be great.

Dreaming of reading

I missed posting yesterday; I took Lucy on a snow day up to go sledding in the deep snow up Highway 50, and by the time I got back not only was it too late to go see Brad for the day but I was also beat. We had fun sliding, though, and it was an absolutely beautiful day up in the mountains—despite the deep snow, it was actually too warm for a jacket. Anyway, it was nice to get out in some nature for a little while.

Now that I’m back as regularly scheduled, I thought I’d give a little state of the nation overview for anyone who might not have checked in for a while or for those who are getting lost in the small ups and downs of daily reports on Brad’s condition. It’s currently Day +28, four weeks to the day after his transplant and just over five weeks since he was admitted to the hospital. The new stem cells have engrafted, meaning that he is now a chimera (in keeping with the title of the blog)—that is, he now has two kinds of DNA. We don’t know for sure whether he is fully chimerized, whether any of his former immune system remains, but his white blood counts are so high the nurses have stopped bothering to track them on his in-room chart—which, in any case, only goes up to Day +26. So Brad is now, I guess, officially off the charts. (And I’ve decided to drop the numbered-by-day post titles, because honestly it’s bumming me out to see the daily numbers go so high with no hint he may be able to get home soon.)

His counts are in fact above normal, as an expected side effect of the steroid medications he is on to treat his GVHD (graft vs. host disease). This is, for those just checking in, a complication caused by the new immune system (the graft) attacking its new home (the host, meaning Brad). Brad has had skin rashes (the first signs of GVHD he got), mild liver GVHD (indicated by high liver enzymes, which are now coming back down), severe gastrointestinal GVHD (continuing but slightly less severe than it was), and ocular GVHD (also continuing and being treated, on which more below).

As a result of all this, plus the fact that he’s on a very powerful cocktail of medications (among them: two immune suppressants, high doses of steroids, a powerful antibiotic, prophylactic antifungal and antiviral meds, and painkillers), he is very fatigued and he’s been dozing and spending a lot of time in bed. Yesterday Brad’s new attending physician, Dr. A, gave Brad a pep talk about being up and walking more. He needs to be more active to build his strength back up and maintain what he hasn’t lost. So, he took a couple of walks across the room and today while I was at the hospital he managed a short walk in the hallway. This is now permitted because his counts are so high, but it was a big challenge for him to walk a short distance. Still, he did it, and it’s great to see his customary determination returning.

We’re hopeful that some of these small gains. Since his skin rashes are looking distinctly better, his nurse says that holds out hope that other GVHD symptoms will also fall into line, improving and helping him feel better. His gut symptoms remain but are slightly lessened. He’s not eating at all, and the medical team says it’s for the best that he have complete “bowel rest,” as they call it; the IV nutrition is covering him just fine and his weight has stabilized. Brad’s eyes seem to be somewhat less painful and while his vision is still not great, the proposed treatment of amniotic-membrane contact lenses, Prokera, is a go. He’s been measured and fitted for those and they should arrive tomorrow; apparently putting them in is a short, easy bedside procedure. He may still need a more permanent intervention down the road but that’s a decision for another day, and we are all relieved at the assurances that his vision will not be permanently compromised.

In other news, today he was also switched back from IV pain meds administered by the nurses to a PCA, the patient-controlled pain med delivery system. I had asked about this possibility (especially given his eye pain) a couple of days ago but was told they didn’t want to go back to it. But his primary nurse today told me she is concerned about how sleepy Brad is most of the time and that having patient-administered pain meds will give him a more constant pain control with less of a big dosage hit up front. The hope is that it will lessen his dozing—and perhaps also help with some hallucinations and confusion he’s been having. The other day he woke up saying that he was filming a PSA advertisement in Hollywood. This morning, his nurse told me, he woke up convinced he was reading, something he’s not been able to do at all given his eyes and his profound fatigue.

Anyone who knows Brad knows that reading is at the very core of his life, and I couldn’t help crying a little when I heard that he’d been dreaming of doing so. A few days ago, he actually asked me to take home most of the (many) books in his room, though he still has his Kindle. The last two days he hasn’t even really been up for reading aloud, though as he starts to feel better and more alert I hope we’ll return to that.  Truth be told, though my reasons are different I haven’t been reading much at all lately either; I can’t concentrate on anything much more challenging than a magazine article. I did pick up a battered paperback of a British murder mystery from among the motley assortment of donated books in the cancer ward family visiting room, so I’m attempting that in the quiet hours in the hospital room. (It was a tough call between that, an outdated oncology textbook, a Family Circle diet book from the 1970s, the meditations of Marcus Aurelius, and several Nora Roberts volumes, but I feel confident I made the right choice.) It might be a long time before either of us get back to our usual more avid reading habits, but surely eventually we will.

Day +26

Sneaking this quick update in under the wire, as it is still February 6 here on the west coast. Brad seemed very fatigued today and, honestly, a little down. He is still having a lot of trouble with his eyes and his gastro symptoms continue. He’s not eating at all and has a lot of nausea at the mere mention of food. He is, however, spending a little more time up and out of bed, sitting in a chair, so that’s a bit of improvement.

We had been promised that the big fancy corneal specialist team would be around today, so Joe, Susan, and I tag-teamed to make sure someone was there all day long, from 9am until after 5pm. Wouldn’t you know it, the specialists showed up after 6pm, so we missed them, but Brad updated me and seemed more engaged by the discussion regarding his vision than he has been for some time. (He’s understandably seemed pretty worried about it all.) The corneal team, apparently, pushed to do the eye procedure the other eye specialists were touting earlier in the week; however, this was strongly nixed by the transplant attending physician, Dr A, who feels that Brad’s immune system and overall state is not robust enough to withstand an operation. (Dr. R, previously mentioned on this blog, has ended her two-week rotation and now Dr. A is in charge.)

Brad told me, via text, that the doctors conversed and agreed upon a different procedure, inserting something called Prokera rings into the eye. According to my rather brief, late-night googling about these, they are a bit like contact lenses made from amniotic membranes (the tissues are donated and subject to quality controls), which in effect temporarily bandage or protect the eye surface and also help heal corneal damage without requiring surgery. (The surgery that was proposed also would have involved amniotic membranes, but a more permanent placement.) The timing of when Brad will receive these is unclear, but it’s encouraging to me that they have a treatment that is a happy medium between nothing and a more invasive surgery that he can’t have right now.

It was also very heartening to hear that the eye specialists have said that they don’t feel his vision is at risk for the long term. Honestly, it feels a little sad that the good news today is “hey, you’re likely to continue to be able to see!” For most of us, that’s just the baseline expectation we take for granted, not actual good news. But we’ll take what we can get—and hope the trend of small, incremental gains continues.

 

 

Day +25

Not much new to report today. Brad seemed a bit more comfortable after a difficult night last night. He is very sleepy and continues to get more and better rest during the day, but his vision remains impaired (both by the eye problems and by their treatment—the fact that his eyes tend to be full of ointments can’t be helping him see). He’s not really able to use his eyes much, but I increased the size of of all the displays on his phone and other devices and that seems to be helping him use them. Though, honestly, he’s too fatigued to concentrate on much of anything.

Much of today was spent waiting for the eye doctors to show up, and as of this writing (5pm on a Friday), they haven’t. They are planning to do a procedure on his eyes daily to prevent long-term damage; I wasn’t here for it yesterday but I gather it involved scraping the eye surface and was pretty painful. Today, he’s been instructed to ask for pain meds first so he doesn’t have to suffer needlessly. There’s been some discussion of a bigger procedure down the line to fix any corneal damage, but it would need to be done in the OR, so it’s not on the cards until he’s much improved and not so immune suppressed. Anyway, questions about the eyes remain, but we’ve been promised that the big boss of the corneal specialists (who knew there were so many layers of eye specialists?) will come tomorrow. More then.

Day +24

Brad is feeling a bit more comfortable today, as some of the new meds from yesterday seem to be helping. He’s also getting a lot more rest than he had been. (I’m writing this in his hospital room as he sleeps.) One new development is that he has been needing insulin shots, as his blood sugars are spiking. I asked the nurse about this, thinking it might be because the TPN is so high in sugar. But it’s not that; instead, it’s a common side effect of the steroids he is on. One more medication, one more set of side effects to control.

I’ve noticed particularly, during this whole thing, how quickly the cascade of interventions and medications builds during such a highly technical, complex procedure as the one he’s been undergoing. One symptom demands a medication, but that medication produces new side effects, which require other interventions and medications to control. It’s all a lot for his poor overtaxed—and now very weak—body. But the alternative, as they say about aging, is a lot worse.

His eyes are about the same as yesterday, and he’s having trouble opening them despite a triple threat of drops and ointments (steroid drops, erythromycin ointment, and artificial tears). And when the eyes are open, he’s having a bit of trouble seeing out of them. The ophthalmologist did seem to feel that the problems are due to ocular GVHD, which is a rarer type of GVHD—more commonly, eye problems show up much later post-transplant and tend to be more along the lines of dry eyes. (There’s a clinical distinction drawn between “acute” GVHD—severe problems that show up within 100 days of transplant—and “chronic” GVHD, which are ongoing, typically less serious complications that emerge post-100 days.) The ophthalmologist who consulted on the case also noted some problem areas on his cornea, and now we are waiting for the corneal specialists to come and take a look at that.

In better news, not only have I learned how to spell ophthalmologist, but also earlier today Brad asked me to read to him, so I read aloud a bit from Ulysses, the Eumaeus episode in which Bloom and a drunk Stephen Dedalus meet an equally drunken sailor. I opened Brad’s Kindle to it at random, but the rambling (not to say shambling) style of the narrative, which mimics drunken conversations, seems like a particularly good fit for someone whose pain meds have him drifting in and out of consciousness and understanding. James Joyce’s rendition of drunken speech even managed to get a few chuckles out of Brad, which seemed to me like a good sign.

On a random note that is not a sign of anything, I just noticed that now that it is February, the days are aligned with the dates: Day +24=2/4. So, there’s that. Surely Joyce would have made some play with that coincidence.

Day +23

Well, it’s February 3, a month from the day of Brad’s admission. Today he said that he feels the worst he’s felt to date, which is frustrating and hard to see. His gastrointestinal GVHD continues to be tremendously miserable, and the steroid treatment is not controlling it well. Thus, the doctors are stepping up the medication yet again, adding a new IV antidiarrheal medication—and if this one doesn’t work, they say the next step is tincture of opium. If that happens, expect a lot of quotes from “Kubla Khan” to grace the blog. Most unfortunately, he also has contracted conjunctivitis (pinkeye) and yesterday could barely open his eyes. The jury is still out on what might be causing the inflammatory response (there’s some thought it might be rare GVHD of the eyes, and the medical team is bringing in ophthalmology specialists), but they are treating every possibility with a big range of topical eye drops and ointments.

All that should treat his symptoms, but to treat the GVHD on a more macro level, his doctors have added a second type of immune suppressant to the tacrolimus Brad already gets. This aspect of his regimen has prompted a lot of questions from people, and it does seem counterintuitive. After all, the whole point of the transplant was to give him a new immune system, right? Why would they want to suppress it? The suppressing medications are to keep acute (and later chronic) GVHD at bay—to keep the new immune system from taking off too fast, attacking Brad (the host) and making him precisely as miserable as he’s been for the last several days. While the GVHD has been treated with steroids, they have been given a fair chance to work and so far they are not helping, so it’s time to take the immune system down a further notch or two.

Dr. R said today that what all this means for the long haul is that, given the severity of Brad’s GVHD thus far, he will likely need to be on more immune suppressants longer than some other transplant patients. He’s likely to be immune suppressed, then, for most of this calendar year. That means a special diet, no restaurants, no crowded public places, and so on. If all goes well, we hope this robust GVHD response will also mean a robust graft vs. tumor response, with the new immune system fighting the cancer as efficiently as it is currently fighting Brad’s gut.

Day +21

A quick late-night update today. The news today was that the nutritionist and Brad’s medical team have put him back on TPN (IV nutrition), as he wasn’t able to take in nearly enough calories by eating, despite valiant efforts. Unfortunately, the main food that was holding appeal for him was broth, which has very little caloric impact. He pointed out to his doctor that he’s at a reasonable weight for his height—but she countered that his body weight doesn’t really matter at this point; it’s more that he needs calories and especially protein intake to support his recovery and maintain his muscle mass.

Although Brad seemed disappointed to go back on TPN (I suspect it felt like a step backward for him), I am frankly relieved to know he will be getting more nutrition, and I’m hopeful it will give him a bit more energy in the days ahead. When I was at the hospital this morning, it was a challenge for him to walk in the halls—but, in keeping with his usual inspiring attitude and determination, he did it. He can continue to eat (as he feels able) while on the TPN, so we are very hopeful his time on it will be short but that it will speed his recovery. Happily, the steroids seem to be working and his gastrointestinal GVHD symptoms were abating somewhat today.

A quick note: I probably won’t be available to post tomorrow (planning to be out of internet range most of the day) and I’m not sure if Brad will be up to it. Regular readers, do not be alarmed if you don’t see anything new tomorrow. Happy Groundhog Day, one and all.

 

Day +20

Today has been another dip in the roller-coaster ride. (I guess we can be grateful that we aren’t doing loop-the-loops yet?) Brad is very fatigued and his gastrointestinal GVHD symptoms continue. I was also concerned to hear from the nurse that some of his liver function tests show elevated levels, but Dr R has assured me that the specific enzymes that are elevated are not the ones commonly implicated in GVHD of the liver. Rather, the uptick in levels is probably due to some of his medications, particularly the change from IV to oral medications, and the likely culprit is the antifungal medication he’s on. (He’s on both an antiviral and an antifungal prophylactically, and continues on vancomycin—a powerful antibiotic—to continue warding off the C. diff. There are several other meds mixed in there, so many it’s hard to keep track of them all, and the cocktail may well be accounting for Brad’s fatigue and a certain measure of confusion today.)

Meanwhile, his white blood cell counts have shot sky high, even above the normal range, as a function of the steroids he’s receiving to combat his GVHD. He’s also having some difficulty working up any appetite or eating, and his weight is dropping precipitously. Some of you might recall that Brad was pumped full of fluids in preparation for the transplant and gained close to 25 pounds of water weight his first week in here. There’s now been a full 40-pound drop since the high point he reached shortly after admission. For anyone who worries this blog is about to take a turn toward a supermarket-checkout magazine cover line (“Lose 40 pounds in 3 weeks!”), rest assured that we’re not exactly prepared to recommend the Stem Cell Transplant Diet as the next weight-loss fad to sweep the nation.

I confess I’m a bit worried about his difficulty with eating and his lack of nutrition. This morning I got here around 11am and encouraged him to have a go at his breakfast tray. It took about an hour for him to take in three bites of Raisin Bran and slightly less than a half cup of Ensure mixed with chocolate milk. As I write, it’s 3pm and the lunch tray stands untouched; in fairness, I don’t think hospital beef stroganoff looks all that appetizing either. He’s mainly interested in hot broth, which the nurse’s station stocks and can provide—but which is not terribly high in calories, protein, or anything except the power to be soothing. In short, he’s making valiant attempts to take in nutrition, but unless there’s a rapid and thorough turnaround in this trend he may be heading back toward IV nutrition (TPN).

With this down day and the difficult weekend, perhaps needless to say, all talk of and predictions regarding a discharge day have halted. Truth be told, I’ve been equal parts excited and scared to think of him coming home—and as sick as he is today, it’s certainly for the best that he’s in the hospital, as much as the girls want to see him and as much as I would love to quit shuttling back and forth to Davis 8. Still, caregiving at home will be no small feat.

I realize it’s also been a long time, on this blog, since I’ve said anything about what is going on on the home front. Joe and Susan, Brad’s parents, have been with us helping everything run smoothly, which has been invaluable. The girls have been doing well (a bout of stomach flu for Nora excepted), and carrying on with various activities. Nora is in a girls’ adventure club with her bestie and a few other girls aged 10-12, and has gone rock climbing twice this weekend (she was proud to conquer a route ranked 5.10). Lucy, who is currently at a birthday party (thanks to the parents of her bestie, who have been taking her for a much-appreciated every-Sunday play date) recently turned in a diorama on weather for her first-grade class; no surprise, our rather electrically charged girl chose lightning as her weather phenomenon and constructed quite a dramatic scene. I’ve been carrying on writing and so on, and tomorrow I’m planning to get out of town for a night or two to take a little break before Brad comes home (great gratitude to Joe and Susan for making this possible).

Today marks four weeks from Brad’s admission, as well as the end of January. I can’t say I’m sorry to see this month end. I know most places February is a cold, dreary month, but here in northern California, February usually brings a week or so of early false spring, when the almonds come into bloom. To me, February usually feels like it brings hope and a promise of better days ahead. Here’s hoping that’s the case.

Day +18

As those of you who are friends with Brad on Facebook might have already seen, today was a difficult one for him. He asked me to post today as he’s not quite up to it, and I’ll spare you the worst details of today’s setback. Suffice it to say that he has now been diagnosed with GVHD (graft vs host disease) of the gastrointestinal tract, which comes with a lot of pain and other nasty symptoms. He’s now on IV steroids to treat it. (As he’s once again not eating, oral steroids like prednisone would be too hard on his stomach.) He’s also been given pain meds again, to address the abdominal pain.

We didn’t get a chance to ask a great many questions about what all this portends for the future or how long he’s likely to suffer with this new development, but the hope is that the steroids will work to help fairly quickly. I think he and I are also both hopeful it will help alleviate the irritation of his hands and feet that he wrote about yesterday. GVHD can strike without warning, so in a way it’s good he was still in the hospital when this latest development took place. No word from the medical team yet, either, on how it might affect the tentative plans for discharge next week. The roller coaster continues.

Day +15

A quick update for tonight. Brad is doing a bit better today, but when I was at the hospital this morning was quite tired. The good news is that engraftment continues very quickly. Today his white blood cell count was 3.7, his neutrophils 2.4. The neutrophils, which are one subtype of white blood cells, are the measure the medical staff are really looking for, and they want to see a sustained set of readings over 1. (That 1 represents a count of 1000 neutrophils per microliter of blood; thus 2.4 is 2400 per microliter, and so on.) A normal white blood cell count is somewhere between 4.5, or 4500 cells per microliter, and 10 (10,000/mL) so Brad is not all that far below the normal range. This is great news, indicating that engraftment has been swift and continues apace. (Thanks again for those great stem cells, James.)

The possible downside of a quick engraftment is the appearance of GVHD, graft vs. host disease—essentially, Brad’s new immune system attacking his body, the host, as if it were a giant disease. GVHD can express in a number of ways, from irritating (rashes) to potentially dangerous (GVHD of the liver, for instance), and he is being constantly and minutely monitored for everything that could indicate GVHD, from skin irritation to liver enzymes. Brad does have some rashes and skin irritation (for some reason his elbows have been bright red; who knew elbow rashes were a thing?), and there’s some disgreement among the medical staff as to whether they are GVHD or just random rashes. The attending transplant physician, who has years of experience, thinks the rashes aren’t serious enough, or clearly enough GVHD, to quite warrant medication (systemic steroids), given the amount of medication Brad is already on.

In fact, they’re trying to step down the various meds and things he gets through his central line, including the IV nutrition. Brad’s throat has healed up enough that he is now attempting solid food; he told me he had a heart-to-heart with the dietitian today and expressed his strong preference for real food as opposed to the hospital’s “liquid diet” of sweetened yogurt, Ensure, and various pureed pap. Rumor has it his first attempt to eat dinner will be a French dip sandwich.

Those who have read Brad’s two latest updates may be either mildly relieved or very disappointed to learn that he has also been taken off his PCA, the patient-controlled dosing of the narcotic he was getting for his mouth and throat pain. The good news there is that the pain is substantially lessened; the bad news, for those of you following at home, is that slightly loopy updates may be less frequent in future. I’ve done my best, however, by pouring a glass of wine before I wrote this one.