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.

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.

Day -6 began even earlier than Day -7, because I had just moved into my new, real room in the transplant unit. It is the biggest private room I have ever had, and well worth the small extra wait. I was excited to decorate and set up my work space, so I got up a bit earlier than planned to do that, which meant I had to take a power nap as we waited to get my radiation treatment.

Fortunately, that nap lasted a while. You see, there is a typical bureaucratic communication snafu between the powers that be at the Radiation Oncology Center and our helpful nurses on Davis 8, so even though Rac Onc Procedures dictate that I must have a 6-hour break between radiation sessions, they insist on having the more than officious transport crew come to get me at 2:15. No matter that they know that my morning radiation session ended at 9:10 AM or so and the soonest they can begin my treatment is thus 3:10. And no matter that the trip takes 5 minutes at the very most. And no matter that my nurse tried patiently to reason with them. So I get hustled over to wait for quite a while, plenty of time to snooze strapped into my padded gurney.

The radiation treatments themselves were uneventful today, since I did not feel faint or anxious, though I seem incapable of holding still for long enough to allow the techs to be confident enough than I’m in the right position (they have to double check every time with a quick x-ray or four) until I am well and truly sandwiched from every angle. As if to underscore this tendency in a comical manner, I managed to get hiccups twice today, once just as my morning radiation treatment was ending, and once just as they were fitting me in for my afternoon session. They said it wasn’t a problem, but I think they were trying to seem understanding while shoving me about in every possible gentle way.

Anyway, we’re now halfway through the radiation, and the only ill effect I’m feeling is a bit of incipient constipation from the Zofran they give me every day before the treatments. So we’re going to up our anti-blockage game from just Colace to Senacot as well. My apologies for these gastrointestinal details, but being badly bound up on the inside is among the worst, most uncomfortable feelings I’ve had in the hospital, including my collapsed lung in May. Spoiler alert: these tummy issues will be likely to surface again, albeit in the opposite, far more volatile mode, later on, after I get the new stem cells. So in the meantime, let’s simply look forward to a more regular Day -5.

Today began early, for me: a 6:00 AM wakeup for pre-meds to get me set for my first 7:15 radiation session. Ativan was delivered, as promised, and I even managed to gobble down some early breakfast before the transport team (I think you could call them the SWAT team and they wouldn’t be surprised or need much of a change of outfit) arrived. I am not allowed to walk any part of this brief journey across the road, for reasons that escape me but no doubt have to do with the transport company’s self-protective policies, so the transport team straps me into a gurney, raises me to a surprisingly, rajah-like height, and wheels me along briskly. I also need to wear a special gown, a hairnet, gloves, shoe-covers, and a mask; that’s for my protection now that I’m deemed to be immune-compromised, so fair enough

The radiation treatments today were time-consuming and uncomfortable, to say the least. I was wedged into a plexiglass-and-metal pole frame which (at the risk of seeming paranoid and hostile) reminded me of something that might be used to detain Hannibal Lecter during one of his less friendly moods. I had to stand as still as possible in this device for the better part of half an hour as they adjusted it, readjusted it, made sharpie marks on my chest and back, and asked me to move over an inch or so, stand straighter, or what have you, and then finally administered the dose. I appreciated the care they were taking; after an earlier simulation and fitting visit they had fashioned blocks to protect some of my vital organs from the extremely high doses of energy they were proposing to send through my body, and these blocks needed to be placed in exactly the right spots, for obvious reasons. I was like a slice of meat being grilled from both sides (morning front, afternoon back) and they wanted to make sure the right bits were being cooked.

The morning session was the worse of the two sessions today, by some distance; they did not let me know when I could relax my posture and so my legs began to feel cramped and stiff right away (and kept cramping throughout). Also, despite the Ativan, I felt light-headed and began to break out in sweat. Uh oh, I thought, here we go again… You see, I had had similar squeamish symptoms during the simulation visit, and at that time I had asked to lie down for a while before the sweat actually broke out. The little rest had done me some good, but had interrupted the process to such an extent that my helpers had wandered off for a while, confusion hadreigned, and one of the procedures they had needed to do had ended up getting skipped. Afterwards, I had wondered if I might not have done better to soldier on, so to speak.

So today, when I feared I was going to faint, I worked harder to breathe deeply (not easy when your upper chest is being pressed into place); happily, I remembered that you use your diaphragm, which is lower down, when you inhale. I could see my sweat pouring down the glass plate in front of me as I leaned my forehead against it, but I realized that I was so well and truly surrounded by restraints that the very things that were making me feel claustrophobic, or like I was about to be executed, were in fact going to prevent me from falling down. I could sag gradually onto the bicycle-style seat they had wedged just under my butt, and I would be fine. So that’s what I did. My head slowly cleared, and the sweating soon stopped. I started to object when one the tech referred to my sweating as profuse, but when I saw the extent of the smear I’d made on the glass around me, I decided not to quibble.

By the afternoon session, I had overcome whatever my morning aversion to the radiation setup was, and recited World War One poetry to myself in a silent whisper instead of having a meltdown. My legs were still cramping up from having to hold the same pose for so long, but that was manageable with subtle weight shifts and a few (now for some reason officially permitted) breaks to stretch and wiggle. Everyone says the radiation sessions will get much shorter from now on, and thus easier to get through (their medical effects won’t truly begin to be felt till they have ended, apparently), which is a good enough reason to be glad that Day -7 is more or less over, and to look forward to Day -6.