Leap Day

Today, as you’ll have seen, the internet is filled with references to the fact that it is that rare date, February 29. Frankly, of all the months I have lived in my entire life, this is the one I am most eager to move on from and the least excited about having an extra day added to. But, of course, the date and my feelings about it are really just a trick of the calendar. Brad’s condition won’t have changed just because tomorrow is March. But it feels hopeful, somehow, to move on from the dark days and, honestly, occasional despair of February.

And there is hopeful news as we move into the next month, and as Brad wraps up two months in the hospital. Over the past several days, Brad has continued to improve. His appetite remains very minimal but he is tolerating little sips of broth and some small bites of rice and saltines (the classic food of invalids) yesterday and today. For tomorrow, he has asked for homemade chicken noodle soup, so I’ll be stopping at the store for ingredients for that on my way home. From now on, the most important elements of his recovery will be his expanding his diet and being able to support himself nutritionally (which will be a long, slow process) and the continued healing of his gut, which was profoundly damaged by the GVHD. His vision continues to be compromised but the corneal specialists came by yesterday and said the ProKera rings (the lenses made from amniotic membrane, which heal corneal damage) are beginning to dissolve as intended, and thus his sight should slowly start to improve. He’s also walking a bit, albeit slowly, but has been cleared to walk in the halls of the transplant unit and that should help him get stronger. Today after his lunch we took a walk—two circuits of the hallway. His doctor is very pleased and they are cutting down on his doses of heavy-duty steroids, which should also help him feel better. And he’s had a couple of phone calls with the girls after a long hiatus during which he didn’t feel up to conversations. They are catching him up on news from school and the sporting world. (As I write this, I just heard Lucy tell him that Serena Williams got upset in the Australian Open, which was news to him.)

All of that represents a real jump forward from, say, two weeks ago. So: Happy Leap Day, everyone. And now, onward to March.


Brad has had a small milestone over the past 24 hours: he was, for the first time in more than three weeks, able to take in some nourishment by mouth without too much difficulty. His main oncologist, who is back as his attending physician for these two weeks, encouraged him to do so, emphasizing that being able to eat normally and support himself nutritionally with his own intake is a key marker of recovery—and crucial to being able to go home. So, over the weekend Brad requested a chocolate milkshake, but even a couple of small sips of that proved too rich and challenging—so he has retreated to the safety of broth, which is easier to stomach. Last night he took in about an ounce of chicken broth and he had a few sips again today at lunchtime. He had a bit of nausea, but it passed quickly, and he said the broth tasted great—a good sign for his appetite returning someday. There’s still a long way to go, but that’s a start, and a good one.

Speaking of food, I’ve been meaning to send a message from the home front as well. We have been amazingly well taken care of by many, many friends with dinners and treats and errand-running galore, and I just want to express my huge gratitude to everyone for the support. Joe and Susan (Brad’s parents) join me in sending out thanks to all of you who have so generously given us both literal and figurative nourishment. Planning and cooking dinners every night sometimes feels overwhelming, and through a great deal of kindness from local friends and acquaintances this task has largely been taken off our plates (so to speak). That has been a huge stress reliever at this very stressful time.

I’m also beyond grateful to everyone who has offered to take the kids for a few hours (or much longer!), sent or brought over flowers, commented here, texted a note of encouragement, emailed or mailed a card (I do read them out to Brad, whose vision is still very blurry), or just offered a hug. All of your kindness and support are keeping us going through this much longer than anticipated ordeal.

Week in review

Somehow this week—Brad’s seventh in the hospital—slipped by without me updating at all. There really hasn’t been much news to report. Brad’s vision has continued about the same, with maybe a very slight improvement. His gut GVHD has improved a little bit, but he’s had nausea and remains unable to think about eating. The predictions that his recovery will be long and very, very slow seem to be holding true. He is, however, more alert during visits and more able to walk a bit in the hospital room, though he doesn’t have much energy, to say the least.

As I write this, Brad is having his third photopheresis treatment, with the machine I wrote about last time. He has slept through it (thanks, I think, to Ativan; also, his days and nights are a bit switched so he’s been sleeping much later in the mornings). They will do another one tomorrow morning, and will continue twice-weekly photopheresis for at least a month. It may end up being a long-term maintenance treatment to manage his graft vs host if the GVHD becomes a long-term issue, which is a real possibility.

I’ve heard from a few people that the whole concept of graft vs. host disease is deeply confusing. It sure is. Everything about Brad’s disease seems to me counterintuitive, starting with the fact that he has really only seemed sick when he is getting treated. (But make no mistake, his cancer is very aggressive even though it mostly didn’t make him feel particularly ill.) I’ll try to explain a bit more about what is happening with the GVHD to make Brad so sick.

Most people, I think, are familiar with the idea of rejection in organ transplant—if you were to need and get a kidney donated from someone, for instance, there is a good chance your own immune system would recognize it as a foreign body and would attack it. Thus, organ transplant recipients are given immune suppressants. In a stem cell (or bone marrow) transplant, rejection works the other way around. Brad’s immune system is no more; instead, the immune system (in the form of stem cells) is what he got transplanted.

As the new immune system settles in and starts to grow in the process called engraftment, the new immune system looks around, sees that everything around it is a foreign body, and in many cases just freaks the hell out (forgive the not-very-technical terminology) and attacks at random. That is why GVHD can pop up in so many places and seems so weird and stubborn. In the case of Brad’s GI GVHD, the new immune system has stripped away the epithelial lining of the entire gut. On his skin it gave him rashes, and it especially made his hands’ skin swell and peel. And there are several other possible manifestations, like Brad’s rare acute ocular GVHD. Brad gets immune suppressants to keep the new immune system somewhat in check (currently he gets two forms of these drugs), but obviously in his case they have not fully tamed the immune response; he will remain on immune suppressants for many months, even after he comes home from the hospital.

The reasons why Brad got GVHD and others with sibling-matched donors don’t are really just unknown and probably unknowable. But it may have something to do with the fact that this whole complicated, counterintuitive treatment of stem cell transplant is still relatively new and not completely understood. When James and Brad were tested to see if James was a match to be a donor, they checked a number of proteins or markers, called HLA (human leukocyte antigen) markers, to see if they were a match. They look at ten specific ones; thirty years ago, when bone marrow transplants were brand new, they only had four markers they could check for. It’s now known that there are many, many other markers that medical science just doesn’t have the technology to test for yet. What that all means is that there’s no such thing as a guarantee of a perfect match, even though all ten of the markers they tested in Brad and James were a match. With a matched sibling-donor transplant, we’ve been told, the chance of severe GVHD is somewhere around ten percent, so—just as with Brad’s initial cancer diagnosis of an extremely rare form of lymphoma—he has been just damned unlucky. (By the way, for anyone new to the blog or wondering about the backstory, I recapped the pre-transplant phase in our very first post.)

The tiny bit of silver lining in all this nasty GVHD is that  it does serve as an indicator that the new immune system is functioning well (if with a certain amount of confusion about its ultimate goals.) And in the big picture, that immune system has a very important job: fighting Brad’s cancer when it returns. If it can do that, all this GVHD, however awful, will be worth it.

A day of action

Yesterday was an unusually busy and eventful day at the hospital. Since generally things there move slowly, I wasn’t expecting the various medical teams to get Brad’s new treatment rolling as fast as they did. But by 9:30, the transport team was at Brad’s room to take him down to the Interventional Radiology department, where he would get his new chest catheter. There had been some debate between giving him a port (under the skin) or what is called a tunneled catheter, with external lines. He already has one of the latter, and they decided to give him a second one, just on the other side of his chest. The port would have required a week of healing, thus further delaying his treatment, so the new catheter it is. (He’ll retain the first one, which is smaller, for delivery of his many IV medications and the nutrition he is still getting; he hasn’t been able to eat for two weeks.) The new catheter is a much bigger gauge than the pre-existing one; they need a bigger tube to do the photopheresis treatment effectively and efficiently.

Brad was very anxious about the procedure and got quite a bit of Ativan to help with that. Then he was well and thoroughly sedated with Fentanyl during the procedure itself. It must have worked great, because when he woke up he asked me when they were going to do it and was surprised to learn that it was done. He remained fairly out of it for the rest of the day, not surprisingly.

I thought the insertion of the catheter was as much prompt action as the hospital was likely to muster in a single day, and Brad’s nurse had told me that he expected the photopheresis to start on Tuesday (thanks to the upcoming holiday weekend). But shortly after we arrived back at Brad’s room, the apheresis doctor stopped by to ask if Brad had gotten the catheter placed and say that her team would be back in a couple of hours to start the treatment. They arrived at 2pm, bringing a huge rolling unit that looks like something out of 1980s scifi, complete with turning dials, spinning parts inside, and lots of R2D2-like bing and boop noises.

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This is the photopheresis machine, a self-contained unit that pulls out Brad’s blood through the new catheter line, sorts it, treats the T-cells with radiation, and returns all his blood to his body. The process takes about two hours (plus some time for the machine to warm up). By coincidence, the photopheresis nurse was the same nurse who worked with James when he donated stem cells (which is done by apheresis, using a similar machine). Brad will have a second treatment today, and then two every week going forward.

Brad more or less slept through the whole photopheresis, thanks to a second dose of Ativan. He also dozed his way through a visit from the eye doctors, who felt the new lenses are starting to work and his eyes look better, and from his oncologist, who has been out of town but came by to see how he’s doing and talk to us about the photopheresis.

I’m very glad the hospital managed to move fast to get Brad started on the treatment he needs, even though we’ve been cautioned to expect progress with his stubborn GVHD to be slow and his future hospital stay to be very long. And now, after that unwonted burst of activity, we return to our regularly scheduled hospital time: waiting.


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.