Countdown

This week between Christmas and the New Year always passes with a feeling of suspended animation. Nothing much ever happens, between holidays. Newspapers publish their end-of-year lists and projections for the year ahead. The old is winding down but still hanging on; the new has not yet started, so we think about it and wonder. That feels especially true for us this year. There’s now less than a week until Brad is admitted on January 3, to start the preparative regimen for his transplant. As I write this, though, we are at an outpatient unit of the hospital, which also has that suspended-animation feel on this Monday after Christmas. The receptionist at the Vascular Access Unit is subbing in for someone and there are forlorn holiday decorations hanging on outside.

We’re spending the morning at the hospital because Brad is having a new catheter placed in his chest (called a Hickman line, it’s external, unlike the ports many people have for cancer treatment). The catheter will be used during the transplant to deliver both the preparatory chemotherapy regimen and then the stem cells. Since May, he has had a PICC line (a catheter placed in his right arm), and it has served him well.

Many friends may know that Brad has always been squeamish. He doesn’t like needles or the sight or thought of blood or the idea of these catheters. In other words he is a truly terrible candidate for having blood cancer, but we don’t get to choose our illnesses. Placing the PICC, which was done in the hospital on an urgently needed basis so he could have chemotherapy, was an ordeal, and truth be told he has been apprehensive about the placement of this chest catheter. But this morning he has been impressively calm and stoic and matter-of-fact about it all.

Likewise, he has mostly been in very good and optimistic spirits as we edge ever closer to his admission. He’s been building the Lego Millennium Falcon that Santa brought Lucy, and shooting some pool on the new table he got us as a surprise family present, and meticulously obeying his oncologist’s suggestion that he enjoy a couple of beers before he goes in.

We have a little less than a week left with him at home, a countdown week that’s considerably less festive than the midnight 10, 9, 8… of the New Year, and I’m not sure I want to make too many top 10 lists from the year that has passed or make a lot of predictions about the one ahead. I’m trying, instead, to take a cue from Brad, and just soldier matter-of-factly through the fears and unknowns, maybe while shooting a little pool.

PS: If you came here looking for a recap, check out either my initial post, “The story so far,” or (for the briefer version) our About page.

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Meal train

Just a quick post: Several friends have asked how they can help, and we appreciate your offers so much. There are some more ways on the About page (especially for non-local friends), but for locals, we have a Meal Train sign-up page kindly set up by our friend Ann (thanks, Ann!). Currently the December dates are filled, but in January and February I will need lots of help and will gratefully accept meals and offers of errands. (If you don’t see January dates right away, scroll forward on the calendar.) Everything is still on track for Brad to be admitted to the hospital on January 3 and he will almost certainly be there throughout January and into February, so I know I’ll be overwhelmed. We have already been the recipients of so much kindness this year and our gratitude to our local community of generous friends is enormous. Thank you all.

PS: If you came here looking for a recap of what’s been going on with Brad, you’ll find it in my initial post, “The story so far.”

The Point of No Return

Preparatory to being the stem cell donor for my upcoming transplant, my brother James traveled to Sacramento recently for an in-person medical examination, an X-ray, some confidential interviews, and yet more blood tests. He came through this day-long process with undiminished enthusiasm, though his travels to countries where malaria is widespread occasioned some concern from the medical team (though he has never actually had the disease himself) and his Canadian address caused two computers to seize up and nearly melt down (which was kind of funny). As I drove him to the airport, he relayed something that one of the many people he had talked to on his visit had told him. She had said, in essence, “You can still back out of this now, no problem. But there will come a point when, if you back out, your brother will die.”

I think he told me this by way of further reassurance, in case I needed it, that he wasn’t going to back out, either now or at any point in the future. I believed him, and still do, but the warning he was given brought me up short. I’d never really considered that particular fact about the stem cell transplant: the radiation and cytoxan I will be getting is so toxic to my immune system that I would not be able to survive at all without another specific person’s stem cells. It makes sense, of course, that one cannot live for long with no immune system whatsoever. The preparatory regimen is in fact designed to wipe my immune system out, as well as to attack any remaining cancer in my body, in order to allow the new immune system to graft more quickly and easily. Still, to hear that, at a certain stage, my life would depend entirely on receiving his stem cells, and his alone, was frightening. All kinds of paranoid, ridiculously selfish questions crossed my mind. What if his plane crashed? What if he were hit by a car on his way in to donate? Nobody else with suitably compatible stem cells would be found in time. Shouldn’t we keep him in a secure location while they administer the otherwise fatal doses of chemicals and/or X-rays to me? Shouldn’t there be a backup donor on call, just in case?

These are the kinds of questions that still occur to me, but they don’t really deserve serious answers. The chances of some tragic mishap befalling him during my window of complete vulnerability are so minute that not even the insurance companies are concerned about them. Still, I can’t help but wonder what it will feel like to reach that point, the point of no return, when my body loses any capacity to defend itself against even a minor infection, let alone cancer. Will I realize what’s going on, or find the emotional energy to care about such an abstract concept? Won’t I be too mired in the daily routine of radiation treatments, chemo infusions, and their side effects, to worry about where my brother is, what risks he might be taking or avoiding, what the statistical probability of his making it to the apheresis machine on January 11 actually is? The odds are so overwhelmingly in my favor, at least on this crucial logistical issue, that I can’t believe I’ll still be worrying about this kind of thing once the transplant process has actually gotten underway.

Behind every wildly irrational fear, however, lurks something much less crazy or foolish: something you might call ignorance, or else, in a different mood, a common-sense refusal to believe in miracles. I think part of what has produced this paranoia in me is my fundamental inability to comprehend or accept the biological, chemical logic of the transplant itself. It all seems like an elaborate, implausible magic trick that they are proposing to play on nature and mortality itself. How can these much-vaunted stem cells possibly live up to their reputation and perform all the tasks they are expected to do? They must inhabit my bloodstream, migrate to my bone marrow, produce millions more of themselves, and build not only a new immune system but a better one, in order to defeat the cancer my own immune system has apparently refused to fight. How far-fetched does that all sound? It sounds like something out of a science-fiction movie. Or out of a witch’s cookbook.

Intellectually, of course, I know that stem cells are a big deal for medical science precisely because they can do all this, and more, but I still don’t really get it. I don’t actually see the products of the astonishing transformations they can effect very often, and though I have met people who have undergone successful allogeneic transplants, they can’t explain how it all actually worked. The dumbed-down things you read in books about transplants don’t make them any more understandable, biologically, and I am insufficiently literate in scientific language to make much sense of more technical explanations. Therefore, I am reduced to a kind of disbelieving wonder when I contemplate the things that are supposed to bring me back safely from that point of no return my brother was warned about. It still feels as if I were going to jump off a cliff in the hope that I will somehow sprout wings and flutter gently to the ground.

Maybe some version of this feeling explains why they call people who have had allogeneic transplants “chimeras.” Not all types of these mythological creatures had wings, but they all look like the product of some unlikely evolutionary quirk or bizarre, unexpected coupling. In other words, they look like crazy shit some starving artist in ancient times dreamed up when he had nothing better to do. Or maybe, if he was really starving, when his whole life depended on it.

This is the age of miracles and wonders

When Paul Simon’s album Graceland came out, it instantly became the soundtrack of our house. I was 13, and even though it was my mother’s favorite music, I liked it too, and still do. I didn’t pay much attention to the lyrics until I was much older, but one especially vivid verse always jumped out at me: “Medicine is magical and magical is art/Thinking of the boy in the bubble/ and the baby with the baboon heart.”

Even though I heard those lyrics, I never thought much about the boy in the bubble, indeed had no idea what actually caused his death. Casual references to him were all over the media in the early 1980s, a cultural touchstone, and I find (now that I’ve looked him up) he was just a year older than I. He suffered from a severe, congenital, hereditary immunodeficiency disease—hence the bubble. And he could potentially have been saved by a bone marrow transplant; in fact, his parents’ faith in the developing technology of such transplants influenced their decision to have him, despite the high risk that he would have the disease from which their first son had already died.

His sister was not a perfect match for a transplant, and  but by the early 1980s, advances made it possible to try a transplant with a less-than-perfect match. It failed not because the transplant was rejected, but because undetected Epstein-Barr virus in the donated blood triggered massively growing tumors, a fast-growing cancer caused by his intended cure.

The magic of medical science has advanced an awful lot since David Vetter, that boy in the bubble, died in 1984. Now babies with his condition can usually have a transplant in their first few months of life; they need not grow up surrounded by plastic, as Vetter did. (He saw Return of the Jedi at a special screening at a movie theater that could accommodate his chamber.) Transplants use stem cells now, not bone marrow, and are far more available to a wide range of patients and less brutal.

Still, the other day a friend whom I was telling about the transplanted casually remarked that Brad will be the boy in the bubble, and it does feel like he’s headed into one. I feel that way even though Brad’s severely compromised immunity post-transplant will last a few weeks or months, not all his life; he won’t need an inflated plastic chamber to get around. (That said, he probably won’t see The Force Awakens, which our recently Star Wars–obsessed younger daughter desperately wants to watch, until it’s streaming somewhere and we can see it at home.) His hospital room, however, will be an isolated air chamber with a kind of reverse flow, behind double doors. There’s a sign on the outside of the BMTU (Bone Marrow Transplant Unit, even though now it’s really mostly the stem cell transplant unit), in bright red, saying how critical air quality is for their patients. It’s all a little terrifying, and that’s just at the hospital, where they have controls and protocols and heavy-duty antibiotics to combat any stray bacteria.

And where the kids can’t go, while he’s on the unit. Our girls and I are already bracing for missing their dad, during that long month and a bit when they won’t be able to see him except via FaceTime, but I am wondering if it won’t be even harder after he’s home, when they will still be kids and he will need to be kept as isolated from them as possible. We are doing our best to keep our home environment as clean as possible, now and to develop good habits: hand sanitizer stationed at every door, no shoes in the house, no friends over because we don’t want to bring in any more germs than we have to, lots and lots and lots of hand washing and reminders. (If you’re local, and you visit in the next year, we will give you hand sanitizer and I might ask if you got a flu shot. I apologize in advance.)

As much as the space and immunity bubble that we want to build around Brad, I feel like we’ve gone into some kind of strange cancer bubble of a more emotional sort. I feel different, apart, from a lot of the rest of the world; things have shrunk down to caring for Brad and getting through his treatment and illness, with the central fact of our existence being his cancer and the main thing we care about being his recovery. Everything else is slightly filmed over, a bit blurred and distant, as I imagine the world might be if you looked at it from inside a wobbly, iridescent soap bubble. In truth, I’ve deliberately gone into a bit of a bubble of my own this week, though a more permeable and obviously more metaphorical one. I have been so tired this year, not just physically but also, even mostly, emotionally. And the biggest test of all, the marathon, the transplant, is still coming up. So this week I decided to sleep in, to stay home, to stand down on most errands and Christmas shopping and hustle and bustle, and rest as much as I could.

This month is a waiting game. We are counting down: to Christmas with the girls’ Advent calendar of tiny sparkly things each day, but mostly to the transplant. Every day brings it a little closer. Every day, I am both terribly scared by what lies ahead and terribly grateful that our bubble will be temporary and that it stands a good chance of working. Brad needs medicine to be both magic and art; how lucky we are to live in an age of miracles and wonders.

Strike a match

A quick update here: In my first post I said that Brad’s brother James was a match and would be donating stem cells for Brad’s transplant. But at that point the word from the labs was actually that he was a 99 percent match. (This was up from 90 percent after the first round of tests. Everything in medicine seems to take a very long time.) That number was good enough for the transplant team, which started teeing Brad up (their term) for admission in early January, on the assumption that that last I would be dotted and last T crossed in due course. Today we heard it was, and that James is a perfect match.

The odds of any given sibling being a match are 25 percent, so we feel very fortunate that Brad and James are matched. The best-case scenario for a stem cell donation, as it happens, is donation from a younger male sibling. The odds on Brad’s disease and diagnosis have hardly been ever in our favor, but it’s very nice to have one thing that has gone 100 percent his way.

Next step: James comes out here to Sacramento early next week, for a round of tests and physicals to make extra extra sure he’s fit to donate. (We’re sure he is.) It’s hard to overstate what a welcome guest he will be.

My Playoff Beard

Now that this blog is up and running I find myself wanting to justify it with an update, even though I’m still a month away from the stem cell transplant that is going to decide the length of the rest of my life, and what kind of life it will be. So here is some news: my hair is growing back. I discovered just how quickly during my recent stay in the hospital when I found myself without the handy electric shaver I’d been using over the past few months to keep my previously patchy, slow-growing stubble from getting too raspy. Since the stakes of my personal appearance were more than usually low, I decided to let my hair grow, and after a few days (during which the consensus was that I looked like a convict) it has come back pretty much in the same patterns as before chemo, though maybe a touch darker. I must admit it’s nice to have the beard back; I have found that without it, people often don’t recognize me at all. 
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Anyway, in honour of many a hockey player before me, I’m calling this iteration of facial hair my playoff beard. You know, the kind of facial hair NHL players start growing when their team enters the postseason, and which they pledge not to shave off until they have either been eliminated from contention or achieved their ultimate objective. So this beard is going to be with me until the cytoxan from the preparatory chemo regimen wipes it out, by which time I hope my new immune system will be working on keeping me cancer-free for good (my version of winning the Stanley Cup). 
 
No, sports metaphors don’t seem out of place where the struggle with cancer is concerned, at least not for me. I don’t imagine anyone can ever “beat” cancer in the sense of defeating it as a disease in the world, but I do think that it helps to picture this health crisis as a strange kind of athletic contest between my team (family, friends, doctors, nurses, my fellow cancer patients) and the mindless, perverse cells in my body that want to destroy the rest of me. It is a deadly serious game, but it has certain physical parameters, very strict rules and a final goal, however distant it may seem. There is also a sense in which I gain positive energy from thinking of my private struggle with cancer as a collective effort, just like playing on a soccer or hockey team. In fact, there’s a way in which cancer has made me aware of just how astonishing and moving the collective efforts of humans really are: the struggle to defeat an opponent we know we can’t possibly destroy for good, only keep at bay in particular cases, is an incredible testament to our resourcefulness and, more importantly, to our (often all too hard to discern) solidarity as a species. The time, energy, money, and other resources it takes for me to get just one successful chemo treatment is staggering, but we humans have somehow agreed that, where possible, it’s worth trying to save an individual life, even at great expense and against terrible odds (and my odds aren’t bad at all, though with a cancer as rare as mine there are few guarantees or even dependable statistics). We spend a lot of energy killing and hating each other, it is true, but I can’t help believing that these negative energies are dwarfed by the positive ones. 
 
Of course, I’m very lucky to be getting good care from a fantastic cancer center, of course, and to have a good job that will make as many allowances for me as I need. But the fundamental reality is that, all things being equal, people do tend to rally around our weakest, most vulnerable team members and work to get them through their problems. In any event, there is no way I could deal with this disease alone, and I’m grateful for everyone’s efforts and good wishes on my behalf. Oddly enough, sometimes I feel this most keenly when I’m by myself in an isolation room at the hospital; even when I am alone I still feel connected to, and dependent on, so many others. As my daughters’ soccer coaches remind their players, when we are at our best, we win as a team and lose as a team.
 
So right now this beard is a token of my commitment to seeing this terrible cancer business through to the end as best I can, and to my necessary single-mindedness in that purpose. I still have what feels like a long way to go before I can even turn my body and destiny over to the UC Davis doctors and nurses on January 3, and I have to do my very best to stay completely healthy in the meantime. Even a slight fever for a cancer patient undergoing chemo means a trip to the ER and time in the hospital, and for me it also means possible delays or compromises with my transplant timetable, which involves many other people and lots of logistics. This complex process includes the sacrifices made by my brother, who will be flying out to Sacramento twice in the next month to get examined, poked, prodded, given injections over a 5-day period to ramp up his stem cell production, and hooked up to a machine that will harvest millions of his stem cells from his blood. 
I still don’t know what caused the infection or virus that produced my fevers before Thanksgiving, but I can’t afford another such episode at this crucial juncture. This means that if there is any doubt at all about my immune system or my overall health in the coming weeks I won’t be seeing friends, answering the door, taking my kids to school, or eating out. I hope everyone will understand that these precautions are necessary, even if only for psychological reasons. Like any cliché-mongering hockey player, I need to feel that I am giving 110% percent, respecting my opponent, taking it one game at a time. You know the usual phrases. They are used because they work, and sometimes they are the only language that does. After all, the regular season is over, and now it’s do or die.

The story so far

This blog will track Brad Buchanan’s progress through his treatment for T-cell lymphoma, particularly through his upcoming stem cell transplant—currently slated for January 2016. Wondering how we got here? Honestly, we kind of are too. This time last year we didn’t have any idea that our 2015 would be dominated by Brad’s diagnosis with and treatment for a lymphoma type so rare it doesn’t even really have its own name.

So here’s the story so far—the long version. (If you’re looking for a TL;dr version, check the About page, which also has some ways to help.) A little over a year ago Brad noticed some lumps under the skin along his jawline. He’d also lost a lot of weight (like, really a lot), but attributed that to exercise. He went in to see the doctor, who looked him over, saw a fit and healthy guy in his early 40s, and said, well, we’ll check out those weird lumps if you really want but we’d be very surprised if they were anything to worry about. Then he started noticing similar lumps on his abdomen.

A couple of biopsies and several other doctors saying they’d be very surprised if it were cancer later, well, everyone was very surprised: He was diagnosed with T-cell lymphoma in February 2015. A word about lymphoma: There are a lot of kinds. The two main types are Hodgkin and non-Hodgkin; Brad’s is non-Hodgkin (NHL, but definitely not the type of NHL that most amateur Canadian hockey players dreamed about as kids). Most NHLs are B-cells; a smaller proportion are T-cells, and then there are many subtypes of T-cell lymphomas. Brad’s is officially called peripheral T-cell lymphoma, NOS (not otherwise specified), though there has been some debate about its exact nature (it has a lot in common with the cutaneous lymphomas). As an aside: T-cell lymphomas are not as well understood as other NHLs, and are harder to treat and cure, in part because their rarity means there are few clinical trials or opportunites for double-blind studies. Anyway! If you are interested in more details about lymphomas you can read up on the various types here.

So, at the time of Brad’s diagnosis it was thought that his disease was indolent (slow-growing), and that it wasn’t particularly urgent to treat. We spent the spring waiting for insurance approval on one treatment option and seeking a second opinion because the type was so rare. Then in May the cancer surprised everyone again: It turned out Brad had a rapidly growing lung tumor (an expression of the lymphoma, not a separate lung cancer), which caused him a lot of trouble. He started chemotherapy right away; it worked so well the tumor shrank extremely fast; it left a hole in his lung, which then collapsed; and he spent nearly three weeks in the hospital at UC Davis Medical Center, which has a great cancer center and which we’re fortunate to live near. Happily, he recovered well from that and the summer was uneventful, with him doing chemotherapy (a regimen called EPOCH, which he tolerated well) every three weeks.

That chemo regimen ended in early September and Brad was in remission and preparing for an autologous stem cell transplant. There are two types of stem cell transplants, formerly known as bone marrow transplants, autologous and allogeneic. In both, the patient gets a super-blast of chemotherapy (and sometimes radiation) to kill off as much cancer as possible, which kills the patient’s immune system. The patient then gets stem cells (harvested from the bloodstream in a process called apheresis, which is similar to dialysis) that can rebuild the bone marrow and hence the immune system. (This used to be done with bone marrow, which was much more painful.)  In an autologous transplant, the patient’s own stem cells are used, which means there’s no risk of rejection; in the second type, an allogeneic stem cell transplant, donor cells are used, either from a sibling or a matched unrelated donor. (Those interested in more details about transplants—there is a lot to know and it is seriously amazing, almost magical science—can start here to learn more.) The allogeneic stem cell transplant typically has a longer recovery time, but in it the new immune system itself can fight the cancer.

The cancer, however, had another surprise in store. In early October Brad noticed that the lumps on his jawline and under the skin on his abdomen were back. A PET scan confirmed that the cancer had returned aggressively and he was started back on a new chemo regimen, called GVD, immediately. (Seriously: he was back in the hospital for more chemo two days after the PET.) And the plan changed: The relapse meant he was no longer eligible for an autologous transplant (which relies on super-chemo alone to cure the cancer) but needs an allogeneic transplant, using donor cells, and in which a new immune system may provide him with a cure. The best opportunity for a match is a sibling; sibling matches reduce the risk of severe GVHD (graft vs. host disease) post-transplant, which is a big risk of the procedure. We were extremely fortunate that Brad’s brother James is a match; there is a 1 in 4 chance of any given sibling being a match. If he hadn’t been, a match would have been sought for Brad on the international donor registry. (One great way to help people suffering from blood cancers is to get on the donor registry if you’re able and willing; here’s where to do that.)

Oh, and that brings us to a note about the blog title: We’ve learned, as you might imagine, a lot of new terms and ideas throughout all this. Most of them sound, frankly, like blah blah blah scienceytalk to our literary-leaning minds. But there’s one that delighted us both. The term for what Brad will be after his transplant is a chimera. No, not a mythological fire-breathing dragon-lion, and not an illusion, but instead a person with two genetically distinct types of cells. That is, the DNA in his blood will be different from his other DNA. (This could give him a golden opportunity to commit a crime; lucky for all of us, he’s a law-and-order-minded Canadian, but maybe I’ll get inspired to write a whodunnit turning on this.)

So where are we now? Brad is undergoing chemo and it’s going well, though he recently got pneumonia (an opportunistic infection when his immunity was low) and spent a few days in the hospital. He’s now at home, lying low and avoiding cold and flu season. (Hey everyone! Here’s a PSA for getting a flu shot and keeping all your vaccines up to date—not just for your own sake but also for all the immunocompromised people out there, like Brad.) That’s pretty much the plan until the transplant, which is now scheduled for January 11. He’ll go into the hospital January 3, for the prep regimen (which involves high doses of chemo and radiation), James will come out here and donate stem cells, and then Brad will have several weeks in the hospital waiting to become a chimera, via what is called engraftment—the growth of the new immune system—followed by a long recovery at home.

Our daughters are vastly relieved that Brad will be home for Christmas, and we’re vastly relieved and grateful that James is able to give us the best holiday present of all time, a new immune system that may cure Brad’s cancer. Watch this space for updates from both of us.