Being told, out of a clear blue sky, that you have to go to the emergency room is a surreal experience, and to be perfectly clear, not one I recommend. It isn’t like going to the ER with a busted foot or shooting abdominal pains. Knowing the scope of the problem makes all the difference in those cases.

I know this from experience; being admitted with a burst appendix is stressful, but the diagnosis is relatively straightforward, with no especially scary alternatives, and the memory of the event recedes at a pace when it’s over.

When I got off the phone with my doctor’s office that day in February, my roommates and I all looked at each other. Confusion and uncertainty hung in the air. Personally, I remember feeling annoyed at how it was going to eat up my evening, and I wouldn’t blame my roommates if they felt the same.

Then, the gears began to turn and the house began to mobilize. Spare plastic grocery bags were fetched, and packed with snacks and clean clothes for a trip of unknown length. Of my immediate family, my sister was the only one I could get a hold of right away, so I told her what I knew and asked her to pass the news along. She couldn’t offer me any insight. We both knew whatever it was, it wasn’t good.

Instinctively I had balked at the suggestion of a hospital in my own town, so we were being routed to Brigham and Women’s, one of the big downtown Boston hospitals, a name that was more to my liking. In retrospect, I could hardly have chosen better. I remember the trip into Boston being quiet. My anxiety had plateaued for the time being, and my cell phone was taking care of navigation. Check-in and triage were similarly uneventful; the emergency waiting area had a reassuring atmosphere of neatness and efficiency, in spite of the tired and worried faces that filled the seats.

The hours that followed were filled with an unprecedented amount of texting and mobile messaging, interrupted at intervals by nurses and internists stopping by to take my history, draw blood, and push fluids. I didn’t know what they were testing for, and I’m still not sure why they ordered a chest X-Ray at one point.

I remember rather distinctly one of the nurses on the phone with my mom, who had asked me to release the hospital to speak to her directly. Commenting on my current state, he told her I did look pale and a bit sickly. I felt frustration at the unfairness of the description. I was in a hospital, for unknown reasons, and I hadn’t eaten anything in eight or nine hours. Of course I looked pale.

The most difficult hour of my stay at B&W came just after midnight, when I was introduced to a hematologist–a hematologist-oncologist, I mean–from the neighboring Dana Farber center. Panic suppression circuits were slowing my brain’s deductive reasoning, protecting me from having to digest too much information at once. That Dana Farber meant cancer, that the man’s presence and my white cell counts meant leukemia, that leukemia often meant death–these facts lay a minute or two in the future. But I was already going numb with anticipation when he began to spell them out. The world slowed, then stopped. It waited for the hour and change it took doctors to analyze my cells under a microscope, and supplement their diagnosis.

See, what makes the words “you have leukemia” so frightening is how little they actually reveal. What the various distinctive types of leukemia have in common is small, and it’s all bad: they are potentially fatal, they can’t be treated with conventional surgery, and have a high potential for collateral damage because they involve the blood and immune system. And this is deceptive, because in a given age group, the more survivable forms of the disease tend to occur more frequently: children, who are more predisposed to the acute leukemias, can tolerate the harsh treatments needed to cure them, while adults and the elderly are predisposed to less-aggressive chronic leukemias that can be held at bay for many years with low-intensity treatment.

Thus, at about 2AM that same night, I was released for outpatient treatment–never having made it as far as a hospital bed–with a diagnosis of Chronic Myelogenous Leukemia. I was giddy, teary-eyed, exhausted and still trying to make sense of everything I’d been told. I know I’m imagining, rather than remembering, when I say the oncologist had a gleam in his eye. I can’t help but imagine all hematologist-oncologists will affect an air of self-satisfaction when they diagnose CML and explain its treatment, which is nothing short of miraculous.

CML was one of the first cancers to be medicated via the principle of rational drug design. It has a characteristic chromosome mutation, and drugs have been created to exploit that mutation, effectively throwing the kill switch on an out-of-control cellular assembly line and bringing the disease to a halt. It isn’t a foolproof process–the mutant cells are unstable and prone to further mutations that might render the treatment ineffective–but the timescale for relapse isn’t currently known, and could be decades in the average case.

That’s a very long time in such a highly active area of cancer research. Long enough for the technological singularity and cancer-fighting nanobots? We’ll see. My symptoms and my aberrant blood counts are already gone, from just two months taking the pill (this is called hematological remission), and I should be in molecular remission by summer’s end. I’m currently planning my cancer survivor tat.

A while ago, around the time my membership to BJ’s Wholesale Club expired–I could write a whole other blog entry about that place probably–Ginneh and I were having some problems with unused food going bad in the fridge, and grocery bills that belied the number of times we ended up resorting to ordering in.

A simple principle was proposed: to avoid buying most of our supplies more than a week or so in advance of when we specifically planned to use them. It was a back-to-basics directive, and it worked, when we found ourselves shopping at all. As you can imagine my sickness really threw a wrench in the works; so did Ginneh’s rehearsals for Forum. And, more recently, one or both of us has often been going through a short spell of the Mopes, the Broods or the Idunwannas. Not to any extent I’d label as clinically worrisome, though it interferes with meal planning and execution.

But this weekend I glimpsed the possibilities once more in a bout of personal initiative. I’d had my fill of delivery of late. Even Kabab Corner was beginning to seem mundane, and that was a problem. So I made a quick trip to Ebisuya and picked up some fresh ingredients and some things for the freezer. What I bought cost only $15, and has served as the nucleus to a whole string of stir-fry meals.

Usually, it’s something slightly more monolithic that kicks me out of a funk and reinvigorates my kitchen activities. Right now I’m inspired to think small: curry noodles and spiced-meat-and-noodle dishes based (very) loosely on Szechuan Dan Dan.

What I like about these is the interchangeability of parts; on some level I know it’s a technological analogy that is unfriendly to nuanced, authentic food preparation; but realistically, how often does my cooking achieve that level of sophistication anyway.

Today, after some confusion about the order of preparation and the requisite cookware, I repeated Sunday’s stir-fry, self-served with a choice of protein. I made sliced tofu and shaved beef on the side, using an identical dusting of pepper, garlic, salt and cinnamon and fried in peanut oil. I stir-fried the noodles and scallions together in chili oil. Roommates’ reaction was good–I was really concerned the crispy coating of spices would be overwhelming. Doing it this way, preparation time was lengthy, but doing the dish without redundancy (like Sunday when it was just pork), it was fast and gratifying.

I think these are the metrics I need to start applying to my cooking repertoire in the coming months. Fast, gratifying, and to a slightly lesser extent easy to clean.

…and unfortunately, I thought I’d written up a neat little account of the night I was diagnosed somewhere in my journal, but I’m not seeing it. Well, better late than never. Maybe I can compile some details from my chat logs in the week after.

I shall have to continue telling the story piecemeal for now; for whatever reason, I’m just not finding myself in front of the keyboard and ready to blog often enough. When I am at home, with the laptop out, my head is occupied by the most fantastic of tales (with bits of Discworld, The Wheel of Time, and Avatar: The Last Airbender currently competing for space), or Ginneh is distracting it with something, or I’m sagging under the weight of other, “more important” tasks yet undone, like pulling explanation-of-benefit records from my insurer.

No matter. Let us make a beginning.

Where do we begin with cancer? One way about it would be to begin where and when the cancer began, but with leukemia, there’s no way of knowing. More sensibly, we could begin with the unfolding of symptoms by which the disease revealed itself. Here there is also ambiguity. But it will have to do.

I’d been training for about a year at three days a week, with fantastic results, this winter when I began to notice unexpected tiredness. As if I’d just returned from a break in my training and had lost some of my conditioning. Cool reason keeps people from jumping at shadows, and mine found reasons enough to explain the situation. In September I’d retired for the year from running outdoors, which meant confining myself to the treadmill and the elliptical trainer in place of the 2.5 miles or so of open road between my house and the gym. Even so I suspected my asthma was manifesting in small ways, and that this, combined with the worn-down arch support in my running shoes, and the physical awkwardness of the elliptical trainer with the slight oddities in my gait, was only making cardio seem more difficult.

It was plausible. My conditioning hadn’t gone so far south as to stand out clearly during weight training. But I was dragging, if only with the cardio. And I didn’t feel great. In spite of a somewhat-improved sleep schedule and all the benefits of training, I was feeling low on energy those dim winter nights. More room for misdirection there. I am about 90% confident myself–I am not a medical professional, so I can’t really back this up–that I am seasonal-affective; and if I’m not, well, I hate the winter nights, and maybe I don’t belong so far north after all. But the feeling usually begins to let up in January or February, as soon as the days begin to lengthen again.

I shrugged it all off. It may be true that youth makes you feel invincible, but I can safely acquit myself here of letting the feeling make me careless. I did care; but there was nothing to do. Nothing to make me believe my body was really not its usual self. That changed Saturday, February 13th 2010.

It was a normal Saturday in Boston in the wintertime; in fact, it was one of the better such days. The avant-garde rock trio, SuperCap, convened at Aviator House in Medford to practice new cover material. We played for a solid hour or so before I left, smiling, to do one of the other things I do with unequivocal pride and pleasure–donate blood.

I may be an aspy and the beneficiary of a decent list of hereditary hazards, sometimes wondering what I have to offer the world when volunteering tends to require some sort of people skills; but I fear no needle, and boy howdy can I give blood. I was giving upwards of once every three months, basically whenever I could find a local blood drive that wasn’t during work hours. Nothing seemed out of the ordinary that day, as I pulled up outside the hospital building where the drives are held. I think I had finally gotten the hang of where to go my previous visit, after a bit of wandering around the complex looking lost.

I patiently awaited my turn, probably fiddling with the buttons of my leather coat. I went over to the booth, breezed through the nurse’s questionnaire to which I already knew the questions, and held out my hand for the finger stick. Again, while I know myself to be good at many things, I’ve always held aloft this simple competency because it’s so plainly useful to those in need: my blood is always healthy and rich in hemoglobin. I may become ill and have to sit out a blood drive, but it’s for passing viral infections. Not because my blood’s not good.

This time, my blood wasn’t good. How not-good? The nurse checked a second time. Yep. Hemoglobin 10.5. Yes, you really can’t donate today. Furthermore–there was a furthermore, which in and of itself was startling to me–I was to see my doctor. The reason being 10.5 isn’t just too low to help a patient, it should be too low for me as well. She held out the hope, to which I clung despite the ringing of the first alarm bells, that my anemia was nutritional in origin. My hemo had been normal three months ago, and by god I would make it normal again in less time than that.

I felt funny saying the word back to Mel and Ginneh. Anemia. Other people get that, right? You, for instance, because you’re a woman and some women just can’t hold onto enough iron. Nothing personal. But then, if you’ve had it and not felt sick, it can’t be so bad. Let’s go order steaks and see if I can’t kick those numbers up while I’m anticipating a test next week. Oh, not that it’d do anything. They’re testing my red blood cell count, not my hemoglobin again. But I want to feel better, and it’s the right thing for a man to do in this situation, and it tastes so very good besides.

So it was that Monday I called HVMA Wellesley and got an appointment to go in Wednesday for a blood draw. Odd, in retrospect, how much process it seemed to entail at the time. Now, when I need my bloodwork, I just drive to the Medford facility and give my name to the receptionist at the lab desk. Back then, I must’ve thought I was having a regular appointment or something. I also seem to recall being given the kit for an occult blood test at some point that week, maybe from the laboratory staff that day. If you don’t know, suffice it to say that it’s just as well that I never actually did the occult blood test, because I received a call at around 6PM that evening bearing much weightier news.

It’s your blood test. Your white cell count was very high… we’d like you to go to an emergency room, Mr Gallagher.

What, you mean like right now?

Thus begins our saga heretofore referred to as “the News”. I am now in the process of copying, compiling and revising for coherence the scattered account of the weeks immediately following my diagnosis with Chronic Myelogenous Leukemia. Current treatment status and other news will follow; suffice it to say I’m doing fantastically well.

2/18, ~2AM
I am nothing if not stubborn to myself. With others, I am more pliable, but for myself I do not bend.

Case in point: after struggling to grasp the concepts of infinity and nil as a boy, I rebelled against what I found. Since that day I have stubbornly refused to consider mortality, and thus to let it factor into anything I do. On some level it just never sank in – come death in the family, death of a friend, a teacher – nothing could stop me from taking my 70-odd years of potential life for granted. Taking things for granted is how I work. I’m naturally lazy.

What follows is hard. Perhaps the hardest thing I’ve ever done. It pits these aspy tendencies of mine against the burdens of survival itself. For I am about to become a Survivor.

Being a Survivor is a form of greatness. Specifically, it is the kind people have thrust upon them. My maternal lineage consists of women who fought cancer and emerged stronger, more purposeful. Inasmuch as I often feel short on these quantities – strength and purpose – there is a certain sensible fit to the situation. But that does not mean that I accept freely.

Every fiber of me has always rebelled at the notion of living each day as one’s last, and thus rebelled against greatness that requires it. I don’t want to become strong if it means leaving my safe little shell. I don’t want to admit the possibility of a shortened tenure on this earth. It is the ultimate “does-not-compute”.

I have so much to learn from my mother.

~1045AM
There must be music. Today is going to be productive.

240PM
After cleaning up a little at home, Kait and I filled prescriptions, got additional bloodwork done, shopped at a new Japanese market and met Ginneh for Korean BBQ. Medford Square is cooler than I give it credit for.

I have a lot of ideas to get out right now, from last night and today. Things may be a bit temporally jumbled for a while.

Up next? Siesta, apparently. The whole house is conked out with “the itis”.

345PM
Resisting the temptation to sign my news posts with, “Live Strong, bitches.”

~6PM
There’s going to be a lot of ups and downs, I’m sure of that. Right now I’m feeling rather vulnerable by myself. Will have to work on that.

I’m also a bit worried by the soreness in my hip, though it’s probably just from lying awkwardly on the gurney at the ER.

2/19, ~7AM
Catholicism, as I understand it, defines Grace as ‘the aspect of God that grants redemption regardless of whether it is deserved.’ I’d like to propose the following analogous agnostic definition: Grace is the good fortune so desperately needed, that is so disjoint from human providence, that we cannot claim even a speck of responsibility, much less conscience taking our luck for granted.

I believe I experienced Grace (2) Wednesday night in a Boston hospital.

~945AM
No biopsy today. I spent pretty much the whole hour of my appointment talking with Dr. Friedman, giving my history, and getting answers. He scheduled the biopsy for Monday afternoon and wrote me a script for Atavan, so I can be appropriately doped.

The good news is, I now have the word of an expert that this is CML – nothing else looks like it, he says – and my treatment is coming in the mail. I also have a timeframe: two months on Gleevec, and I should be feeling like my old self again, with the exception that I will be giving my blood to science every three months and not the Red Cross. Alas, my tenure as a donor has ended. I shall never join the eight-gallon club.

As for what the biopsy is for – it’s rather technical, but the upshot is it will tell me how long I can expect to live comfortably on pills alone. The research into leukemia wonder-drugs is young, so they only really know outcomes for a ten-year window. What they do know is that, depending on what mutations they find in my bone marrow, I would be more or less likely to have to resort to the much riskier option of a bone marrow transplant in that time frame.

I hope for the best.

~1140AM
I rattled off some numbers for Nikkiana that bear repeating. It’s proving interesting to have ready access to all the test results on the MyHealth site. I’m sure mom will feel the same.

I’ve been telling people this a lot: science is awesome. Science is how the doctors ultimately identified my cancer, without ever completing a fecal smear or rectal exam (wasn’t looking forward to that). And it’s how they’re going to heal me.

Anyway, here are some statistics. [note: this interpretation of the data was kind of off, as it turned out]

Normal human blood contains between 4,500 and 11,000 white blood cells (leukocytes), and between 4.6 and 6.2 million red blood cells (erythrocytes), in every microliter. When you donate a liter of blood, you’re mainly donating the trillions of blood cells suspended within it. The predominant red blood cells are responsible for most of the important aspects of blood, but they barely classify as cells – they are minuscule, inner-tube like bodies, with no head, no genetic material to tell them what to do. The white cells, of which there are many different types, are drastically larger, more active and more sophisticated. But they, too, are short-lived and do not generally reproduce.

Now compare that with my blood. Tuesday’s [Wednesday's?] hemogram, the blood test that led to my hospitalization, recorded nearly 300,000 white blood cells per uL, and only 3.3 million red cells. That means, first, that I have about 3000% too many white cells, and 25% too few red cells. It also means that, where a normal person has about 1000 oxygen-carrying red blood cells for every disease-fighting white blood cell, I have only ten to one. It’s the sort of thing even I would instantly recognize as abnormal, having read blood cell plates in my high school research course.

The last bit is significant because it points to the ultimate nature of the disease and all its symptoms. Overcrowding by fast-growing, less-competant cells. Neutrophils, in particular.

There’s a tally of the specific white cell types in my bloodwork. These include neutrophils, basophils, eosinophils, monocytes, and lymphocytes. Neutrophils are normally the most populous, being first responders in case of infection or trauma. But while they would typically make up 45-70% of all white cells, in my blood they are 91%.

This is because the neutrophil progenitors are taking over the white bone marrow, crowding out other cell lines and reducing their density in the bloodstream. CML begins with a specific genetic abnormality, called the Philadelphia Chromosome, in the bone marrow, in the parent cell line for either the neutrophils, the eosinophils or the basophils [actually it's the common parent cell to all three]. A gene on the mutated chromosome causes these cells to shout, “Go Go GO!” and blindly churn out copies, stealing the space and resources of other cell lines. Compared to other leukemias, the resultant cells are less harmful to the body and more likely to actually do their job; still, any one line of white cells can’t serve all the functions of the immune system without the others, much less all the functions of blood, which requires platelets, plasma, red cells and white cells.

So the main cause of damage in CML is the sheer overpopulation of one type of blood cell, to the exclusion of others. But there are other problems. One is the buildup of uric acid in the blood. Uric acid is a common metabolic byproduct (normally eliminated as urine) and the cause of gout or kidney stones when it reaches high enough concentrations. Dying or oxygen-starved cells produce it, so the mass death of white blood cells can push it through the roof. Not only does treating leukemia cause this; mature white blood cells lead short lives, so an overabundance of them means a steady production of excess urea as the oldest die off. The leukemia itself has pushed my serum uric acid to 9.3 mg/dL, where the safe range is between 2.7 and 8.2. To correct this I was prescribed allopurinol, a drug which will cause me to piss out the excess.

~1140AM 2/20
Well, at least my dreams seem to be unaffected. They are filled with sex and the desire thereof.

~1PM 2/22
Today is proving difficult. It’s the day of my biopsy, and since that’s late in the afternoon I was making a point of showing up for work. But my body evidently had other ideas.

It seems we no longer trust each other. I’m in the paranoia phase, “feeling betrayed by my body” (mom’s words) and wondering what else I might be sick with. I could have sworn for instance that my testicles used to feel softer – are they, too, jumping on the cancer bandwagon?

My body, meanwhile, is angry with me for over-medicating in an attempt to beat this terrible cough I developed, which I blame it for catching. In addition to all the over-the-counter drugs I’ve been taking, I’m treating a UTI with doxycycline, which I’m supposed to take twice a day without food. I took one this morning along with robutussin, and I’d no sooner arrived at work and put down my laptop bag than I felt suddenly weak and nauseous.

This is going to stay with me for a while. I raced to the bathroom, holding my stomach down. Mom said my nerves might mess with me today, but this didn’t feel like nerves. I made it to the handicapped stall, threw open the door and commenced the porcelain goddess worship. Red. Red, everywhere. I muttered to myself, “Oh, no.” This is the big one. Surely the doctors were mistaken about how sick I was. From here, I’d go straight to the ER, there to be put on an IV that would be my food for the remainder of my short life.

Wait a second.

The contents of the bowl weren’t the right color of red. Rather, a mix of pink and red. Robutussin. There was only a slow drip of blood from my nose, which had popped like a cork when I vomited.

Still, I didn’t really fully calm down until I was extricated from the building and back in mom’s company. No longer feeling nauseous, my heart no longer pounding.

When is this shit gonna stop? When can I get back to living and working?

~330PM 2/23
I’m working today, for some definition of working. Work related things have been flushed from my context queue with amazing thoroughness, so it’s taking a while to get back into it. Not to mention that I have this terrible cold, and more friends to get in touch with.

~440PM
There’s something strange about this venusian death flu I’ve contracted (which is to say, this miserable head cold). I realized today just what. Blowing my nose yields lots of crystal-clear mucus. Usually, upper-respiratory infections color the mucus green or yellow. In the more productive bouts of coughing, mostly over the weekend, there was phlegm from my airways, too, but I don’t know about that. Mom says clear snot is a good sign I’m winning. I don’t really feel like I’m winning, although I guess I feel less like death than I did Sunday.

~320PM 2/24
Work goes slowly. I misplaced my Concerta this morning, but it’s nothing to do with that really. It’s that I’m trying to debug social, even my contribution to which was beginning to spiral beyond comprehension when last we left off, and my head still isn’t fully in the game. I do need that vacation.

~11AM 2/25
The magic bullet has arrived.

It’s all kind of crazy-seeming still. Eight days ago, I was just anemic. I hadn’t left the office for my bloodwork. This morning, I received a parcel marked “extremely urgent” and containing a binder full of documentation and a pill bottle in a bag marked with the biohazard symbol. Standard procedure for anything considered “chemo”, I suppose. Still, this drug is nothing short of remarkable – and annually, it’s worth more than I am, before taxes.

I’m a bit nervous about taking it today, in the office, but there’s no point putting it off – lunchtime seems to be the most reasonable time for both the meds – and mom’s pretty confident any side effects wouldn’t appear so soon after beginning treatment anyway.

~1240PM
I’m a little nervous now. Consensus seems to be any serious side effects wouldn’t show up for days at least, but (as of 1230) the clock has started. It is only a matter of time before I know if the treatment works, and if my body can stand it.

Being young, I am presumably on the optimistic side of that ninety-something percent split between the patients who live perfectly normal lives on Gleevec, and the remainder for whom it either doesn’t work or exacts too high of a toll on the body. Then again, if I was older, I might define “too high a toll” differently than I will.

For the time being I can only follow the instructions, to the best of my abilities. Take with plenty of food and water, avoid grapefruit, avoid tylenol, cautiously screen every drug or botanical extract I put in my body, watch for side effects, and carefully mind the temperature of where I store my pills.

God, have I even bothered to post here since going to all the trouble of installing the last major WordPress update? That would’ve been only a couple months back, I think… so no.

Well, I have immense ground to cover. More than I can accomplish in one night – possibly more than I can even properly begin in one night. But I have to try. This weekend, among all the other to-do items I’ve flagged on my computer, should be the weekend when my various dangling threads of communication and news-sharing finally begin to weave back together. In retrospect I may find my choice of communication channels for the last few months silly, though I had my reasons.

Fortunately, in the balance of things in retrospect, that will not seem important at all. The only thing that matters is the information I have to share with you, O humble internet.