Day +1

Despite the dopiness I felt as the stem cells were being pumped into me yesterday evening, I had a lot of trouble falling asleep last night. There was certainly a lot to think about and some major emotional readjustment to do: for months, everything had been leading up to that climactic medical moment (kind of like the birth of a child), but suddenly the horizon looked (and still looks) a lot flatter. The complex transplant plans came together beautifully, and now we settle in to wait for engraftment (when the new stem cells come to root in my bone marrow and start making a new immune system). This doesn’t happen overnight, unfortunately; most estimates I’m hearing are between 2-3 weeks, if all goes well. Poor Lucy has been asking when I’m going to come home, and it’s hard not to have a proper answer ready to give her, beyond the long explanation of why I can’t come home today, as she seems to have expected. (I got Uncle James’s stem cells, didn’t I? Well, yes, but…)

One further resemblance between me and a very young child: when all else fails, sometimes judicious use of Benadryl will induce much-needed sleep.

The number zero has an empty quality that doesn’t seem to belong at all to what’s been happening today. So many people have messaged and emailed and so on that it’s been as full a day as I can remember, and I have had lots of company in my hospital room (Kate and my parents, plus lots of medical business to transact and discuss with doctors, nurses, and the amazing transplant coordinator). My brother took his shots uncomplainingly, endured the aches and pains like a champ, and showed up in the apheresis room ready to donate some serious stem cells. He was charted on something like world-record pace, and delivered double what was needed, so we have plenty of material to work with (even a future top-up if needed), again he can get on his plane tomorrow and resume his own rightful life on schedule. I received the cells between 6:30 and 8:00 or so, mostly dozing from the Ativan and Benadryl they gave me. I’m as tired as I’ve felt for many weeks, but anything but empty; instead, I’m full of love, gratitude, and hope.

It is day 0. Transplant day. I am not usually the superstitious type but I got out my grandfather’s lucky silver dollar and am carrying it with me today. It can’t hurt. Right now James is at UC Davis Medical Center hooked up to an apheresis machine, staying still while they take many, many millions stem cells out of his body. (Update: I misunderstood and misstated the number of stem cells being donated in the original version of this post; they’re actually taking five million per kilo of Brad’s body weight, and as of this writing they think James’s donation is on track to produce twice that amount.) This should take about six hours, if all goes well. After that, somebody will whisk this alive, life-saving matter to a lab for conditioning and counting and then it will be delivered to Brad sometime in the evening—the aim is to do it around 6pm, but hospital time moves slowly and the all-important shift change looms at 7, so I’m betting on 8pm. By all accounts the stem cell transplant itself is severely anticlimactic, but I want to be there anyway.

Last night before I went to bed I looked at Twitter and saw a tweet saying the user had seen that David Bowie had died but that it might be a hoax, the account might be hacked. I went to bed not sure if it was true and woke up to social media awash in tributes, links to songs, pictures of Bowie, in all of his many ever-changing personae. (One of the most arresting of Bowie’s physical characteristics, his two differently colored eyes, has sparked speculation that he may be a genetic chimera, though online sources say that the difference is due to a paralyzed pupil.)

I never know quite what to say about, or how to mark, a celebrity death. Today, though, I thought of Bowie’s wife and family—I had not realized he had a daughter so young, just 15—and of the privacy with which he surrounded his death from an unnamed form of cancer, and I thought of the enormous range of his songs, which I put on many a mix tape in my teenage years. Yes, they were actual cassettes. I was born in 1972, the year “Suffragette City” (probably my favorite Bowie song) came out on The Rise and Fall of Ziggy Stardust and the Spiders from Mars; “Let’s Dance” was a staple at our junior-high dances; and I remember “Space Oddity”—though it came out far earlier—played over and over after the Challenger disaster. And of course it was the poignant, sorrowful story of Major Tom trapped in space that first popped into my head this morning, its isolated tragedy of overreaching science seeming somehow uncomfortably close to the bizarre microscopic, interior magic of stem cell transplant.

But Brad’s is not, will not be, a Major Tom story. He is floating in an isolation chamber, high above our neighborhood, but there is something we can do, something the doctors are doing, today. And we hope it will wreak a Bowie-like transformation in him (maybe with less makeup if Brad’s past tastes are indicative of anything, but hey, if he gets better he can do whatever he wants). Bowie the chameleon was the master of reinvention and transformation. His death is doubtless a deep, abiding, and very private grief for his family, and I hope I don’t disrespect or lessen that when I choose to take a symbolic meaning from his fame and its story. May the stem cells Brad gets today, and Brad himself, be just as good at reinvention and rising from the ashes as was twentieth-century pop’s greatest chimera.

I know it’s a terrible, pretentious cliché for me to quote a famous poem here, but since it’s the last day of my old life (in a certain weird biological sense) and since it’s been an uneventful day from a medical point of view (no more chemo, just a few antibiotics),  I am going to indulge myself. “Byzantium,” by W.B. Yeats, has always struck me as a kind of esoteric vision that only someone as strange as Yeats could manage to have, and though I love its obsessive cadences and urgency, I will confess that I have never managed to make much sense of it myself, though I’ve taught it (or tried) and have read a fair amount about Yeats’s wacky ideas when he wrote it. However, as I’ve walked around in the hall outside my room these past few nights, I have been haunted by certain (OK, many) lines in the poem that suddenly seem to resonate with my own current situation. There’s a lot in it about blood, death, and rebirth, and the poem’s truly astonishing ending captures something violent yet wonderful about the physiological transformation I’m in the process of undergoing, I suppose. Anyway, for those of you who want to read it again and picture me patrolling the halls in a garish yellow gown chanting it softly to myself, here it is:

 

The unpurged images of day recede;

The Emperor’s drunken soldiery are abed;

Night resonance recedes, night-walkers’ song

After great cathedral gong;

A starlit or a moonlit dome disdains

All that man is,

All mere complexities,

The fury and the mire of human veins.

 

Before me floats an image, man or shade,

Shade more than man, more image than a shade;

For Hades’ bobbin bound in mummy-cloth

May unwind the winding path;

A mouth that has no moisture and no breath

Breathless mouths may summon;

I hail the superhuman;

I call it death-in-life and life-in-death.

 

Miracle, bird or golden handiwork,

More miracle than bird or handiwork,

Planted on the starlit golden bough,

Can like the cocks of Hades crow,

Or, by the moon embittered, scorn aloud

In glory of changeless metal

Common bird or petal

And all complexities of mire or blood.

 

At midnight on the Emperor’s pavement flit

Flames that no faggot feeds, nor steel has lit,

Nor storm disturbs, flames begotten of flame,

Where blood-begotten spirits come

And all complexities of fury leave,

Dying into a dance,

An agony of trance,

An agony of flame that cannot singe a sleeve.

 

Astraddle on the dolphin’s mire and blood,

Spirit after spirit! The smithies break the flood,

The golden smithies of the Emperor!

Marbles of the dancing floor

Break bitter furies of complexity,

Those images that yet

Fresh images beget,

That dolphin-torn, that gong-tormented sea.

 

 

 

Another uneventful day of Cyclophosphamide and Mesna, which means we have now well and truly entered “the point of no return”: they have given me enough toxins to eliminate my old immune system, and are preparing to give me my new one. Thus I will begin anti-rejection drugs such as tacrolimus tomorrow which will smooth the transition for accepting my new stem cells from my brother. Though I have had my share of nervous moments about this exact phase of the transplant, everyone seems to feel things are going very well, and in the end it is very hard not to assimilate this to all those other moments where I have essentially put my life into the hands of experts who are familiar with the risks and rewards of the rarefied methods they employ. In other words, the miracle I thought you kind of had to strive for has started morphing into something that everybody treats as pretty banal. Which is really just as well, come to think of it; not every transplant patient is so lucky.

My parents arrived today to visit and help with the kids; it was of course great to see them, and their presence, as well as my brother’s, have only added to the strange but welcome sense of normality that I’m enjoying in the hospital. And yes, after some anxious moments, my brother collected his gold medal in the 100-yard dash while I galloped home in the 400 (we finished “Chariots of Fire”).

A few odd side notes: my weight has reached an all-time high of 190+ pounds, thanks to all the IV fluids they continue to pump in. My tongue is so swollen that I bit it twice last night in my sleep (I have to sleep on my back exclusively, it seems). I am snoring like crazy from the liquids in my sinuses, so I feel like I have developed instant sleep apnea. Aside from all that, I feel pretty good: I’m still riding the exercise bike to break a sweat, and my throat and mouth are more or less sore free (aside from self-inflicted teeth wounds). However, I no longer use a tooth brush, or even the kids’ toothpaste I have gotten used to over the past year or so, but rather these odd sponges that just kind of swab out your mouth.

I’m looking forward to Day -1, because that will be my last day in negative numbers. Starting from zero will seem like a head start, I’m thinking.

 

Perhaps some of you will have guessed that I broke up today’s update into two parts because I was apprehensive about the way things might go once the dose of cyclophosphamide hit my system. Well, I needn’t have worried, at least not today: none of the gory or alarming things they mention as possibilities came to pass, and I had a very pleasant visit with my brother James. We watched the first part of “Chariots of Fire,” a movie that (I believe) played a formative role in both of our lives: it turned me into an anglophile (or, more accurately, someone with a strong curiosity about social changes and tensions in post-WWI Britain) and it inspired him to excel as a middle-distance runner: he ended up attending the University of North Carolina, Chapel Hill, on a track scholarship. We’ve since discussed which of us was more like Eric Liddell as a teenager/young man (I say me, since I tended to get by on inspiration, wild obsessions and ascetic dedication to esoteric causes) and which more like Harold Abrahams (I say him, because he showed more actual grit, focus and ambition in making himself a real runner for one thing, whereas I only ran till I stopped beating him, but also since then as he has carved out a downright noble career with various NGOs around the world). In the end, though, we both just love the movie and wanted to see it again together after all these years. It has a hugely bittersweet quality, of course, since neither one of us can run very much anymore (he’s had back trouble and I am, well, not currently in any kind of running condition), but the sight of those carefree young men running in the surf along the coast of Kent is endlessly beautiful. And then there’s the music…

We have made a date to finish the movie tomorrow, and so we will see our respective alter egoes  collect their gold medals on transplant Day -2. I can’t wait.

Day -3 Part 1

It’s a total change of rhythm this morning: since I’m not going over to the Cancer Center for radiation treatment, there’s no need for an early breakfast or rushed departure, which is nice. On the other hand, they are now pumping saline solution into me at twice the previous (already uncomfortable) pace, so my waterlogged feeling yesterday is now even more pronounced. They’re also getting ready to give me Mesna, a so-called “rescue medicine” that, according to Wikipedia (sorry, fellow academics for the shoddy source) “is used therapeutically to reduce the incidence of haemorrhagic cystitis and haematuria when a patient receives ifosfamide or cyclophosphamide for cancer chemotherapy.” Since I’m getting a very concentrated dose of cyclophosphamide in a few hours, and don’t much like the sound of haemorrhagic cystitis and haematuria, I’m all for the extra liquids and the Mesna, which will help me evacuate the extra toxins from my body ASAP, at least in theory. I have no idea how I’ll be feeling later, so I’m making this entry now and am going to jump on my bike before breakfast, in case I don’t feel like it later on. More to come post-cyclophosphamide…

Today was Day -4, the last day of my radiation treatments. It was the smoothest and easiest radiation session yet, and I even got to ring a brass bell to signify my graduation from the select club of radiation patients served at UC Davis Cancer Center. I am feeling pretty tired today, though, perhaps because of the cumulative effect of the radiation treatments themselves, perhaps because of the anti-anxiety drugs they’ve been giving me, perhaps because of the IV fluids they’ve been pumping into me 24/7 for a few days now (and which have added about 8 pounds of water weight to my body, as well as general sluggishness) or perhaps because I’m just not sleeping that well at night, despite the Ambien.

However, I did get back up on the exercise bike they have been so kind as to provide for me, and pedaled away for about 20 minutes in order to break a respectable enough sweat to merit a shower and change of outfit. If I can manage to do that every day, even just for a bit, they tell me the deep breaths will really help keep my lungs clear, and my lungs are the weak spot where infections tend to come to roost in my body during low-immunity periods.

And yes, I’m coming up on another one of those periods imminently, since tomorrow I will be getting a whopping dose of Cyclophosphamide (aka Cytoxan) which is very toxic to many things, among them lymphoma, immune systems, bladders, kidneys, hair, and probably a lot else they don’t care to mention. (Hence all the liquids, which will help to sluice away the unwanted vestiges of these chemicals.) So even though I will likely continue to feel more tired, I’ll need to make an extra effort to get up, move around, get on the bike etc. in order to keep my lungs clear and stimulate my body to get rid of the nasty leftovers.

The pleasant surprise around here is that I am (thus far) allowed out of my room after 9PM, as long as I’m gowned up to the max, so I can walk back and forth in the transplant unit hallways for a while before bedtime. Even that little bit of a walkabout does a lot of good.

My brother came in today for another visit; he had already taken his first doses of the Neupogen that will ramp up his stem cell production, so I wasn’t too bummed that he beat me in a lengthy game of chess. We’ll have a rematch tomorrow, I trust, on what I am excited to note will be Day -3. As long as you’re not suffering too badly (and believe me I’m really not) time kind of flies when you’re counting down to a new lease on life.

Day -5 began a bit later than some, since I took an Ambien around 2:00 AM to see if I could avoid some of the tossing and turning that plagues me in the wee hours, especially in the hospital. That worked like a charm, but meant I was a bit bleary-eyed when the nurse came to give me my radiation pre-meds around 6:00. No disgrace in that, but good thing I wasn’t in charge of hanging up the Zofran etc.

The best part of the day was a visit from my brother James, who arrived in Sacramento late yesterday and who will begin taking shots of Neupogen tomorrow in preparation for his stem cell donation on Jan. 11. He’s been amazingly steady and supportive of this crazy process from the word go, and as readers of this blog will imagine, it was a huge boost just to set eyes on him. I could go on and on about how fortunate I am to have such a great guy as my brother, let alone as my life-saving donor, but I don’t want to gush more than is strictly necessary. As a very small token of my limitless appreciation, though, I did use my growing influence around here to talk the crack medical transport team into giving him a ride with us over to the Cancer Center where he was going to pick up his shots and meet with the transplant coordinator.

Finally, maybe I’m not such a loser in the Radiation Oncology team’s eyes after all. This afternoon, they dispensed with the repeated X-ray cross-checks on my positioning inside “the rack” or whatever they call the contraption I have now spent hours in without actually knowing its name. It was straight to the treatment: three zaps and I was done in less than half an hour. My calves barely felt it at all! Last day of radiation is tomorrow: Day -4.

P.S. For those keeping track, yes, the Senacot is working a treat.

As Brad has been faithfully tracking, today is Day -5 on the transplant calendar. (I’m largely holed up at home today, not going into the hospital; I have a slight sore throat and they are very strict in saying that nobody with any illness should visit.) Below is the tracking poster taped up in his hospital room; all those inscrutable acronyms represent different lab results for the things they’re tracking daily, above all the all-important WBC, or white blood cell count, which represents his levels of immunity. (The handwritten ones are treatments he’ll receive; TBI, for instance, is total body irradiation.) The nurses do their best to make this somber daily slog festive and colorful. I can’t say I’m exactly sure why an excited frog represents transplant day, but I can’t object to it, either.

By another way of reckoning, today is also the twelfth day of Christmas, also known as Epiphany. (The word comes from the Greek for “reveal.”) January 6 is the day in the ecclesiastical calendar that the Magi showed up from the east, bearing their gifts, and thus a traditional time for gift-giving in Christian cultures—though this custom has moved entirely to the frenzied unwrapping of Christmas itself, and survives only in the longest of all Christmas carols, “The Twelve Days of Christmas,” with its onslaught of gifts (364 in total, by the time all the days have been counted).

Calling Epiphany Twelfth Night, or observing it at all, is so thoroughly forgotten that I find a lot of people confuse the twelve days of Christmas with the latter half of Advent, and think the song represents a countdown to Christmas. I was raised attending an Episcopal church, and the liturgical calendar (noted, at services, on the black sign up at the front that also displayed the numbers of the hymns we would sing) would note many seasons by counting after the holiday, as is done for the feast of Epiphany. (On January 6, I remember our church hosting a Christmas tree bonfire, one of many remnants of pagan light-festival celebration that linger in Christmas observance, and a reminder that all traditions layer, accrete, morph, and change.)

Brad’s brother James arrived here in Sacramento last night, and today he meets with the transplant team at the Cancer Center to get the shots he must give himself to boost his stem cell production before donation next Monday. Like the Magi, he came from the East (though the journey was less arduous, I hope), bearing gifts: in his case, millions of stem cells. We’d rather have those than all the gold, frankincense, and myrrh that could have fit in the overhead compartment. I’m also really glad he is bringing stem cells instead of partridges, drummers drumming, or swans a-swimming.

Aside from the carol, Shakespeare’s play is the other most familiar Twelfth Night reference in our culture, or at least familiar to Brad and me. Brad has been writing about it for a wide-ranging academic book project he’s been working on. I’ll let him tell you about the book if he wants to, but I’ll just say that when I went into the hospital on Monday, the table in his room was covered thickly with cut-up bits of paper, notes that he is rearranging into his manuscript. It was the first day of radiation, and he was feeling well enough to work (after the anti-anxiety medications wore off, that is). Slips of paper, books everywhere, a welter of ideas bubbling into a coherent whole: That’s been his method of writing for all the two decades I have known him, and seeing him at work, even in a hospital gown and with an IV of saline fluid dripping into his chest, was both cheering and reassuring.

I confess I haven’t read Twelfth Night in years, but it’s a quintessential Shakespearean romantic comedy, full of cross-dressing and mistaken identity and seemingly hopeless love triangles and tangles that dissolve, like magic, into pure happiness at the play’s end. But all the lightness has a somber undergirding: the play is also a story of siblings, separated by a disastrous shipwreck and thinking each other dead. Sebastian’s rescuer says he was “snatch’d one half out of the jaws of death.” Our small individual catastrophe is no shipwreck on the shores of Illyria, and we certainly know Brad’s Twelfth Night hospital stay is unlikely to involve any frothy comedy of mistaken identities or love triangles. But we hope it will snatch Brad out of the jaws of death—and seemingly magically resolve to reveal two healthy siblings and a happy ending.