Leukemia Journal, Weeks 2-3
~230PM 2/28
Took my fourth dose today without incident. No serious side effects up-front, though some might appear later as the drug goes to work and the cancer begins to die off.
Thursday afternoon we heard test results from Dr. Friedman. All indications are good so far that there is no lasting damage and none of the scary additional mutations that would interfere with Gleevec. Here’s the message I sent to my friends that night:
Hi all,
As you may or may not be aware, I was in the hospital last Wednesday for some blood tests, after a finger prick test at the Red Cross showed I was anemic (very unusual for me). This is the mass e-mail I mentioned tentatively to some of you. Since then, I have shared as much as I could find time and energy for, and told myself I would spam the rest of you once I had received conclusive test results.
I have now received those test results. They are positive for Chronic Myelogenous Leukemia (CML). ***Stay with me, people***. This is a slow-moving cancer and is one of the most studied, treatable diseases of its kind. I am NOT going anywhere.
The wikipedia summary is decent, but I can paint the basic picture succinctly: slight weakness, slight tiredness during my workouts, no obvious cause. My heart and muscles are still in great condition, but I have too few red blood cells. A closer look at my blood shows neutrophils–the dominant white blood cell type–in obscene disproportion, one for every ten red cells. They ought to number one to every thousand, but the neutrophil precursor cells in my bone marrow have developed a mutation called the Philadelphia chromosome, and gone insane. They keep cranking out more of these mutated, poorly functioning white blood cells. CML is very often caught during chronic phase thanks to unrelated bloodwork, or (as in my case) hemoglobin screening. Eventually, if not treated, the mutant cell lines would crowd out all the healthy blood cell lines and kill me.
***So***, you might ask, what is the treatment? I took my first dose with lunch today. It’s a pill: a non-toxic, once-daily, designer drug called imatinib that targets the abnormal gene at the root of the cancer. It achieves remission in almost everyone, usually in a few months. By summer, I should be (basically) as good as new. I will never be cured, unless I undergo bone marrow transplant. But imatinib and its second-generation derivatives delay that risky procedure by years. Maybe forever. They don’t really know how long–imatinib has only been approved for 9 years. It’s cutting edge stuff.
If any sufficiently advanced technology is basically magic, then this is some deep fucking wizardry.
And what can you do? Mostly thoughts and prayers for now. Seriously, I’m not even being put in the marrow registry until and unless they find the imatinib has failed for some reason. Feel free to chat me up and ask me questions. If I missed someone, feel free to pass the news along (some of my e-mail contacts are way out of date). I’m in no real danger yet, and I will raise a glass with every single one of you in the future–one glass precisely, as that’s all I’m allowed to drink in a sitting now–but I’ve had a scary week, and the uncertainty isn’t over. I have some vacation time coming up in March, in which to sort things out. My hope is that out of this whole thing I will learn to face some of my fears, realize more of myself, and live more meaningfully. As a wiser compatriot of mine once said, every day we’re alive is the Bonus Round and we should try to make the most of it.
Oh and hey, here’s one thing. When it gets to be summer time, wherever you are, know that I am currently kicking cancer in the face, and savor that.
Much love,
DJ
~110PM 3/3
At work. Still not getting a lot of work done.
I’ve begun the transfer of knowledge to my superiors today so they can take some of the load off my back while I’m out. I want so much to be focused on actively helping, but I just can’t be that right now. I think I need to surrender momentarily to the slipping away of all that context – social networking protocols and business models, my own code, everything – and be alone with myself for a while.
I hear my other passions calling to me, and I find myself wishing I had more time off than just the vacation. Time enough to take a stab at music, or at writing. There is something precocious in the way I used to bend Sibelius to my will, back in college. The mastery of nuanced orchestration wasn’t there. But the turn of phrase, and the ideas, were there in abundance. I wonder if any of the old material could be adapted to the trio of me, Mel and Ginneh.
~200PM-400PM 3/3
Fuck. I forgot that I’m supposed to sit still after I take these. They definitely do make me a little queasy, albeit less some days than others. I’m asking Dr. Friedman about it; maybe he’ll prescribe something to help keep it under control.
And while I know it’s sort of childish to bait your doctor when you could just ask, I’m also curious to see if he responds to the mention of my lowered white cell count. I received a summary of my yesterday’s blood count in the evening, with full results today. They show between 16 and 21 percent reduction in peripheral blood WBC, after less than a week of treatment. Again, let me provide some background:
I mentioned my initial count on Wednesday 2/17 was 300 (actually 299 and change) thousand white blood cells per microliter of blood. This, like all the figures I’ve named thus far, is the result of an automated hemogram performed by a flow cytometer (a very cool and very expensive piece of equipment I once played with at the AMC immunology lab). Anyway, that first count was what sent me to the hospital. Two subsequent repeat tests were done: one the following afternoon in Medford, at my oncologist’s request; the next a week later, when I happened to be getting blood drawn for some unrelated tests.
Both those tests showed lower counts of everything compared to the initial count – about 280K WBC on the 18th, about 288K on the 26th. The latter count was immediately after the start of treatment. In both cases, though, the dip is slight, and I imagine could be explained by happenstance, or by the number of vials of blood I was giving up for testing.
Yesterday, after five days on Gleevec, I had my first in-progress white cell count. Dr. Friedman wanted to get at least one in before I left for vacation. This time the numbers are, to my eyes, significant. I’m down to 235K WBC. Depending on which starting figure you use, that’s a drop of between 16 and 21%.
This is not the same thing as feeling better, although I hope it’s progress. In those same counts, my red blood cells were at 3.35, 3.28, 3.38 and most recently 3.18 (in millions, per uL) compared to a healthy minimum of 4.6. They’ve gone down slightly, and I couldn’t say if that decrease is also significant – slight collateral damage from the imatinib? - but I’m sure it’s nothing unexpected. The cancer is still in there wreaking havoc, suppressing all the red and non-cancerous white cell precursors. Even after the Philadelphia-positive cells are reduced enough, it will take time for the normal ones to grow back.
I continue to learn a lot about the practical side of hematology and immunology. Along with the automated results, which are good for accurately comparing distinct cell lines, they’ve been running differential manual counts, the essential practice of which I remember well. Except that in the immunology lab, we only cared about a few cell types – B-cells and monocytes, mostly – so we used cultured cells, or spun and filtered out whole blood to get the ones we wanted. These counts include all the prevalent mature cell types, and sub-populations distinguished by visual features as being activated or sick or immature. This, I understand, is how my cancer stood out clearly even before chromosomal analysis was complete.
My records don’t include the blood smear taken at Brigham and Women’s, and I’m not sure if that’s the same thing as a manual count or something more specifically focused on cell morphology. But I have the manual results taken along with the above automated counts. These are focused mainly on analysis of my white cells. Unlike the automated test, my first manual count shows low neutrophils (only 12% of the white cells, instead of 45-70%) because it’s counting mature neutrophils. It shows slightly elevated eosinophils and basophils (the other members of the granulocyte family that causes CML), but the real story is the high counts for populations labeled “metamyelocytes” and “bands”.
These are the immature stages of granulocytes (metamyelocytes are still undergoing differentiation, band cells just aren’t fully grown). Matching results up with the automated test suggests they are mostly immature neutrophils. Connecting the dots, of course, is far beyond me, but I have been told that it was characterized as gross overexpression of granulocytes in mixed stages of development, the hallmark of chronic myelogenous leukemia. If it were acute myelogenous leukemia there would be even more of the immature cells and less of the full-grown ones.
Actually as I read this I’m starting to notice I misunderstood some things, from my initial impression of the automated cell counts. I thought this was generally one specific cell type or another, but apparently the numbers aren’t lying, I’ve got abnormal activity in all the granulocyte cell lines. CML doesn’t happen as a cancer of only neutrophils, it’s a cancer of the entire family because it affects the precursor.
I need to get off this for a while. It’s making me antsy.
115PM 3/4
I’ve started corresponding with Carol, a friend of the family down south. She’s the mother of someone near my age, and has been in treatment for CML for about 2 years. She’s doing very well on Gleevec. Like me, she was diagnosed as an indirect result of a routine blood test. Unlike me, she had to wait a week or so to receive the specific diagnosis. I can’t imagine having to pull myself together for that long – I was given my tentative diagnosis in the ER, by a specialist in training from Dana Farber. For me, it was only an hour or so to get from “it’s probably leukemia” (which is when things first become very real) to “it’s probably CML”. Much as I dislike emergency wards, there’s no denying I was in the right place to be diagnosed.
I gather CML can be sort of lonely – it’s relatively rare, so many people who get it won’t know anyone else that does. And the prognosis and treatment make it somewhat distinct from other cancers. I was thinking about that recently myself; the only thing that came to mind as similar is HIV. HIV, like CML, is incurable, treatable, and tends to eventually mutate and progress. Of course, you can’t cure AIDS with a bone marrow transplant.
410PM
Awesome. I get to take more exciting drugs – they’re treating my cough as a bacterial infection with reactive asthma.
~630PM
Spoke briefly with Dr. Friedman, who called from his hospital rounds. They have some kind of additional biopsy data, but not the chromosome analysis yet. Seriously? Anyway, he was mainly calling to assure me they continue to see no troubling abnormalities, that the treatment is working, and that I can rest easy on my vacation and check in when I return. He concurs with my primary doctor’s treatment of the bronchitis and is phoning in something for the nausea I’ve been getting with Gleevec (bringing my prescription count up to… 8? That’s Concerta, Ritalin, Gleevec, allopurinol, albuterol, Flovent, azithromycin and some kind of anti-nausea pill. The codeine makes 9 but I’m probably done with that).
~1210AM 3/5
Interesting discussions had over dinner with our Olin cohorts (as only Oliners could have them): Gleevec is teratogenic, meaning it causes birth defects in pregnant women. As with many such meds, doctors also take the extra-cautious step of warning against my impregnating someone while I’m on the drug – on the off chance my partner absorbs enough of it from my semen, I assume. But I’m on Gleevec indefinitely. So when or how would I (theoretically) bear children? Via test tube while using a condom for protection? Or simply pulling out? I could be utterly wrong about the reason for the ban, and hence my reasoning on the solution. If really trace amounts were enough, I’d be screwed already as it’s too late to bank my sperm sans imatinib. But I think that’s unlikely.
1140PM 3/9 – 240AM 3/10
This is my first entry since before leaving on vacation. I have a lot to cover here.
I didn’t make any specific decisions about journaling while on break. I think it would have been nice to get an early start, and use it to fill more of the empty hours. But there are several reasons why that didn’t happen, the main ones being 1) my computer was recently infected with malware and cannot browse the Web, and I’ve been slow to adopt mom and dad’s single-user single-browser desktop for essential non-mobile tasks (maybe I ought to have tried twisting dad’s arm into letting me install Chrome here); and 2) I have been in no shape to try and write.
My self-confidence is reeling from a double-blow, here. First, still quite fresh in my mind, I was diagnosed with cancer, which shook my faith in my body (I went through a brief phase of pointing to things on my skin and asking Mom, PA-C “is this cancer?”). Then, in the midst of a long day of air transit, my nervous system went batshit.
It happened like this: I arrived bright and (considerably) early Sunday at Boston Logan International Airport, armed and ready. Mom had forewarned us that screening lines were slow again and to budget extra time, but the terminal housing Southwest was very low-traffic and I was through in minutes, everything according to the usual procedures. I bought some fancy earbud speakers, had a light breakfast and killed time listening to MP3s at the gate. I was using the bathroom a lot that day for some reason (I’m supposed to be on at least 64oz of fluid a day, but I don’t usually manage quite that much). Nobody was online, so I made a couple inane posts to Facebook and eventually it came time to depart.
The Boston-Chicago leg of the trip had me a little bored, as it turned out I didn’t feel like napping, but I ran my Droid in airplane mode and flipped through my tunes for something sufficiently diverting, and pretty soon we were descending again. As I stepped off the gangway into Chicago Midway Airport, it was dawning on me that I would be in transit for most of the day–the only times printed on my boarding passes were the departure times of 905 AM and 1245 PM; I’d realized that the latter was Chicago local time. I’d been too groggy to do the math before. But no matter; I was going to Florida dammit. I notified the Internet as to my progress and, having arrived early for a connection already timed for lots of leeway, saw about finding lunch so I could take my meds.
I found my lunch at a tacitly Jewish-influenced restaurant, seemingly part of a local chain (Maury’s? Larry’s? I forget). I opted for the grilled cheese-and-bacon, which may or may not have been a healthier choice than the potato pancakes. Definitely not as healthy as the chicken matzo ball soup, but I wanted something of substance. There were only two tables, so I sat and ate with a glamorous looking dark-haired woman who seemed well traveled. We didn’t talk much, just a bit of polite banter when I sat down, but I felt good about handling that much smoothly. Why yes, I can be introverted without being awkward, thank you.
I tossed my trash and returned to the gate, taking up a seat at one of the round tables with the squat chairs next to the TV that was playing kid’s cartoons. It seemed like the easiest place to throw down my bags and keep them both safely within my personal space. Besides, I was momentarily intrigued at one point by Space Ghost (before quickly realizing how ancient and cliched the original series was). At some point, possibly while I had walked off to use the bathroom, a moderately attractive blonde thirty-something deposited her two kids at said table. I remained, and found myself appreciating / objectifying her a little on the sly. For some reason I assumed she was a single mother. If there were someone I’d feel comfortable engaging in flirtatious chatter at an airport, it would be someone like her. I’m decently comfortable talking to older women, and they’re under-valued and under-pursued relative to how much fun they are. As it was, I was tired, her offspring were close at hand, and so mostly my heart went out to her for the stress they seemed to be causing her. I stayed quiet.
And I decided to take my pills with the time I had. I hadn’t the foggiest idea what we’d be doing for dinner, so I figured I may as well put off transitioning to taking them at dinner time, as Dr. Friedman had recommended; but since I had another couple hours airborne ahead of me, it was a fine time to try out the sedating anti-nausea meds he’d prescribed. Prochlorperazine, the bottle said. Little red disc-shaped capsules–almost as small as those candies we used to get on Valentine’s or Easter, embedded in paper sheets like blister packs. They looked harmless enough.
Conforming to the directions as well as time permitted, I took one of the little pills and waited half an hour before taking the Gleevec and allopurinol. By then it was getting close to boarding time, so I used the men’s room again and readied myself and my things for takeoff.
I remember yawning once, and thinking this boded well. This time my position in the boarding queue was slightly more favorable, and instead of the aisle seat next to a preoccupied couple I obtained a middle seat next to a cute red-headed girl my own age, grad student looking. She and I and the middle-aged guy who eventually grabbed the aisle seat talked a while about Florida, about the upcoming favorable weather, about our relationship with the sunshine state and reasons for going there. He was visiting his son in Clearwater; I don’t remember where she was headed.
We all agreed that it was a lovely place, and a welcome respite from the cold dark states we were variously coming from at the time. Our voices competed with the furious shrieks of one very unhappy child, whom we were later surprised and relieved to see ousted from the plane, along with his mother.
The flight attendant said something in a ragged voice about passenger safety; the mother stalked off in a huff, carrying the devil-child; and the remainder of the flight’s passengers promptly burst into applause, which I thought was rudely timed. I couldn’t argue that it was a blessed relief, though.
Everything felt wonderfully quiet in the minutes that followed, the stark contrast of the babies absence making even the takeoff of the 737 seem like nothing more than a gentle hum. Somewhere in there, I drifted off to sleep for a good hour.
When I awoke, the plane was quiet, settled. My neighbors had settled in to their respective reading. At some point the girl took out a sketchpad and began drawing instead. Since they weren’t talking, and I was bored with music for the moment, there was nothing for it but to follow suit. I took up my reading: Down and Out in the Magic Kingdom, by Cory Doctorow. I was beginning my second read-through of the book, a book I remembered for its striking speculations and meaty concepts more than for the dark, sometimes infuriating trajectory of its traumatized protagonist (to its credit, I picked out a number of new details this time through that made me smile, like the implication that Stephenson’s Snow Crash will someday be made into a Disney movie).
I think I made it about as far as the end of the prologue, a scant five to ten pages in. My attention span just wasn’t cutting it for reading at the moment. I felt bored, and a little restless. I fumbled with my phone and started going through my music library looking for something suitably relaxing, something that might coax me back into a state where I could sleep off some of the flight time (or at least stomach the dullness). But relaxation would not come. None of the music seemed to help; in fact, everything seemed to make me feel more restless.
I killed the music, and looked at my two neighbors. Being on a flight of that duration provides no good backup distraction, if your mainstays fail you. I quickly discerned neither of them was going to want to launch back into conversation, especially if the main subject matter was my bitching. So I did the only thing I could think of: I got up and used the restroom at the front of the passenger cabin. By this point I was beginning to feel… agitated, I suppose is the word. So I’d do anything to distract myself, and I did have some fluid in me that I could get rid of.
Crouching in the latrine did feel like a step in the right direction. It was noisy, but quiet, and I was alone, surrounded only by walls. I milked it for what it was worth. But I couldn’t just spend the flight in there. And I began to realize, as I made my way back to my seat, that the relief was temporary. In fact I was beginning to feel worse. Maybe I had already begun to reflexively control my breathing, and moving about the cabin interrupted that. Maybe the feeling just started to kick in, then, in earnest. Whatever the case, I was back in my seat, but seriously wishing I could be someplace else.
Suddenly, or so it seemed, I found myself asking the dangerous questions. How much longer am I stuck in here? How can I get out of here? I was thinking a bit like that child they’d escorted off the plane before takeoff. Idonwanna! But it was too late for that. I had taken to the skies with no apprehension, no nervousness, no thought that this flight would be any different from the 9 or so I had logged before. But this flight was at risk of becoming quite different, and at 30,000 feet with hundreds of miles still to go.
I say at risk because on some level I was already keen to what must be going on. The words “panic attack” had not formed in my mind yet, but I had the general sense of it. At some point I must have tried to take a few deep, calming breaths. I found that it was the last thing I wanted to do, because it made my head reel and my heart leap into my throat, radiating a vague disembodied pain.
What may well have prevented me from causing an airborne medical emergency is: I did the following with hardly any thought, and without instruction.
I dug myself deeper into the back of my chair, I let my eyes fall partially closed, and I let the air slowly escape my lungs, which were now mostly clear, thanks to a couple days of steroids and antibiotics. My body demanded more air, but my brain said no. With considerable effort, I managed to enforce slow, shallow breathing, maintaining a facade of calmness as the well of my anxiety grew deeper. This was after I’d gotten up to use the restroom a second time, finding not much relief, and somewhere around the time that they announced we would be making our [something] descent in [something] minutes. The minutes dragged out, but eventually the fasten seat-belts sign came on with a ping, and I felt the plane nose downward.
If my brain had had more oxygen to work with, it would have successfully counted every tortured breath in every minute between the moment we began our descent and the moment final approach was announced. Things got slightly hazy; in retrospect this was for the best. Once or twice I emerged from my virtual stupor, to ask one of my neighbors about the landmarks below us or try to voice appreciation for the beauty of the scene. I tried inwardly to gauge the trajectory of my own descent into panic, too, not even wondering for the moment whether my fellow passengers had noticed me blanching. Was this coming on as a function of my growing distance from Boston, and the stabilizing pressure of work? Was I a ticking emotional time-bomb, counting down to the moment of my arrival in vacation-land, there to finish my ugly personal confrontation with mortality? Was I in far, far worse mental condition than I could have guessed?
Or was this chemical? I’m pretty sure the thought had occurred to me that it might be a bad drug reaction. If it hadn’t, it should have. Not that this wasn’t worrying in its own right. I’ve been written 9 prescriptions since I was diagnosed, 6 of them entirely new. I have little choice but to take it on faith that the growing armada of pills left in my keeping will play well with each other, as well as with me.
I touched down at Tampa International Airport a wreck, but my disquiet was tempered somewhat by relief at each successive step closer to “home”. I waited patiently for the plane to taxi and begin unloading. I waited to reach a safe spot in the airport where I could put down my bags and call mom for further directions. I waited for the tram car to carry me from the terminals to the baggage claim and exit. I waited for mom to make her way from the cell phone lot to the pickup area.
Then, after mostly letting mom pack me and my things into the car, there was nothing in particular to wait for, and I had to figure out what came next. “Home” was still too far away to focus on, and the next best thing was a moving vehicle that was not doing anything to improve my state.
I was now traveling with a practiced diagnostician, which was good. But my precarious control of myself forced me to speak only in occasional short sentences and nods and grunts. It was a while before we’d communicated enough for her to deem the situation worthy of outside assistance and for me to help put her through to Dr. Friedman’s office. That didn’t reach anyone right away, so she called Vicky next, looking for some kind of confirmation that anti-nausea meds might be the culprit of what was now being called a “panic attack”, and advice on how to treat that.
During this time my condition worsened considerably. Maybe it was just easier to control on the plane, with something substantial and reasonably close to look forward to. Maybe it was something about the car. I don’t seem to be a big fan of traveling by car this week. Whatever the case may be, I hit my lowest point sometime after we passed through Wendy’s, where I had difficulty bringing myself to touch the food, or finish wiping my own ass. We got back in the car, and as I told mom later, I went someplace bad.
I had my eyes mostly shut most of the time, and in the absense of sensory input I was daydreaming or hallucinating things in the flashes of sunlight and shade. I still knew where I was and what was going on, but I was really feeling taxed by the fight to stay calm, and uncertain of what milestone would come up next. Were we shooting for home? The emergency room? Some other vital information from Dr. Friedman? Personally, I was beginning to root for someone telling us to go to the ER–and we have established that I hate the ER. Panic attacks are just one of those things they’re admittedly good for, and quick to treat with serious drugs. Or at least that’s my impression.
What I got wasn’t quite as nice, but it was close. And I suppose when you add up the travel time to reach the nearest ER with the time I would have realistically spent in triage, it was just as expedient. My oncologist finally called back, apparently while house-sitting his toddlers, and he said the magic words.
Yes, this is a drug reaction. Yes, it will fade. How long? When the dose wears off, about six hours from start time.
Which still meant there was nothing to be done or expected before reaching the house, but it did provide some light at the end of the tunnel. I took heart, and dug in for the long haul.
I’m breathing easy now, as I write, but those first 36 hours in Florida were dodgy. And they’ve made me stop and think a little, already, about my career. About what would happen if I had to stop relying on my brain for the sort of intensely focused work I have been demanding from it for more than two years (not counting school). I have been a demanding taskmaster, and my mind has thus far conformed–save, arguably, the few months of burnout and reduced productivity that led up to my diagnosis (and who knows, maybe that was the anemia too). But it’s entirely possible that something will come along and change the game, just as thoroughly as taking Concerta changed it for me in my school years.
Maybe it already has. In the weeks following my diagnosis, as I was too wrecked to focus on programming tasks, I sensed vaguely my own efforts to shift the weight onto different task sensibilities–education, task delegation, a renewed interest in requirements design–and maybe it will continue to be that way. Not because I’ve lost an ability, but because I’ve burned it out too badly to have any interest in it.
Between you and me, I don’t think that’s likely.
When I arrived at the house Sunday I was still lethargic and restless, but at least I had reached a destination. Personally, I still think mom must have sped the whole time because it didn’t feel like two hours. But then, I also think mom secretly had engine components replaced back when my check engine light “mysteriously turned itself off” and the computer subsequently reported no problems. She can be a hard woman to gauge, and I was definitely oversensitive to the acceleration of the car at the time.
I found it hard to focus on most TV programming without getting distracted and agitated; West Side Story was right out. I spent the first 24 hours demanding quiet wherever possible, generally being a momma’s boy and a good patient, and hoping that each additional bite of pizza or sip of water I accepted was a step toward pissing the evil chemicals out of my system.
When the panic had passed, began the day of fidgeting, and after that, the day of being generally bored around Floridian snowbirds but generally polite and well-postured. It wasn’t until Wednesday that I tested my ability to drive, when mom requested I take the first leg of our trip to Busch Gardens.