October 23, 2008

It was on the evening of Day Zero—my second, not my first—that things started to go south. The chemo kicked in, my blood counts dropped, and I generally started to feel like crap.

Partly because of the time passed, and partly because of my condition at the time, I don't remember the exact chronology of what happened when. So what follows is a loose rundown of approximately the last two weeks of September:

- I ran a couple of fevers for a while, which probably wasn't helped by my tendency to wrap myself in my blankets like a tortilla while sleeping. In my defense, the room has something of a draft that is not at all fun at night.

- As was to be expected, I slept a lot. What I didn't expect was how demanding my body would be in its desire for sleep. More than once I'd be doing something innocuous, like, say, deciding what to eat first from my lunch tray, and I'd fall asleep for anywhere from five minutes to half an hour. Then I'd wake up, realize what happened, go back to trying to decide—and I'd nod off again. Once, I even woke up partway through a transfusion I had no idea had been started.

(Speaking of which, for over a month I've been keeping it in my head to mention that I'd had another platelet transfusion. Current count: 42 blood, 14 platelet)

- Eating became an issue at this point because my taste buds were just beginning to regard food with suspicion—I'd sometimes feel slightly ill just at the thought of certain foods. Rather than wait for things to get out of hand, I asked for a nasogastric feed tube (a tube that goes in one nostril and down into the stomach; not unbearable to put in, but I'm not lining up to do it again.) It turned out my timing was excellent as I got my first mucusitis-induced mouth sore, in the back of my throat no less, that evening.

- My right leg, which had been starting to cause trouble even before I came to Ottawa, got much worse. It swelled to a shocking degree, eventually growing to more than twice the size of my also-swollen left leg. I lost track of how many baffled doctors looked it over. An ultrasound and CT scan revealed nothing, but an MRI eventually showed an abscess. But what caused that,or for that matter the swelling? Since I was already receiving a battery of antibiotics, a "wait and see" approach was taken, which has mostly worked thus far.

- Spending so much time in bed wreaked havoc on my already diminishing muscle tone. By the end of the month I needed a cane, walker or wheelchair to get around, if my chemo-induced fatigue relented in the first place. More telling were the simple things I couldn't do: lifting the MacBook with one hand was risky, with two was a chore; I needed help showering; even opening a can of Ensure was impossible to do on my own.

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September 23, 2008

This is just to keep count. Since my last accounting, I have received six more blood transfusions (for a total of 42) and one platelet transfusion (for a total of 13).

Sorry to keep everyone in the dark about Day Zero and the time since. I've just been so tired/feverish/immobile/occupied, depending on the time.

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September 22, 2008

A true smile of gratitude.

Because of the importance of the procedure, many people think surgery is involved during the last stage of the transplant process. In fact, the fluid is transfused into the recipient. In this case, Emru received it directly via his chest catheter.

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September 8, 2008

So yesterday we touched down at the hospital and got myself admitted. Almost immediately we were told that my floor was still under quarantine for parainfluenza. (I say "stlll" because it had already been under quarantine during our August visit—this is one persistent bug.) That meant I had to say goodbye to my family before I went through the doors.

Observations about my room: My room is only slightly smaller than the rooms I was in before, but the amount of usable space is about the same. The view is great. (The windows face south.) The bed doesn't have as many controls. There's a clock on the wall. There's a slightly beaten-up La-Z-Boy, but also a stool. There's a fridge next to the bed, about 32'' high x 20'' long x 20'' wide. I've got the usual side and night tables. I have my own shower in the bathroom.

The first nurse I had during the day was surprised that my chest catheter was a Broviac (a reaction that has been repeated several times since—they're not that common around here), and changed the claves—the blue rubber caps at the end—so they'd be compatible with their usual method for blood draws and infusions. The new claves are light blue and semi-translucent; very 1990s Macintosh.

I met with one of the attending physicians yesterday and we talked about what still ailed me, plus the medications I've been taking. I also got a binder (I was supposed to get it at our first visit) full of information about what happens before, during and after the transplant. I got about halfway through it before I was visited by one of the pharmacists, who spoke with me in detail about some of the things that are likely to happen to me in the coming weeks. It's interesting to note that the bone marrow transplant programme here is mostly run as an outpatient programme; people who live in the area actually spend most of their time at home. It was repeated several times (including in earlier discussions, and in the binder) that infections typically come from the critters that already live inside our bodies, which can run riot when there's no immune system to hold them in check. So there's little need to stay in hospital for the whole process.

Started the chemo yesterday—my old pal fludarabine—just two hours after I got in. Each dose is about 30 minutes, and I get one a day for four days. Then it's four days of busulphan.

Nothing else exciting about yesterday; got Rogers Portable Internet set up in no time flat, and spent most of the evening going through my e-mail backlog.

Today was similarly dull. I found out early on that my hemoglobins were low (lower than last week) so I got two units of blood (blood transfusions 35 and 36; 48 overall) around lunchtime.

Speaking of lunch, it's hard to say if the food here is better or worse than before. The gravy they put on the meat here is better, but there's still too much; the vegetables aren't overcooked; the mashed potatoes are better; and so on. Here they don't keep kosher, so I have a few more options available to me, like the ham and cheese sandwich I had yesterday. Still, I get the feeling I'm not going to get dishes like Moroccan chicken with couscous here.

One funny thing about the meals here: as before, every meal comes with a sheet of paper describing what's on the tray. This one is reasonably detailed, except for one thing: it never says what the main entrée is, instead listing it just as "main entrée." So it's like a little surprise at every mealtime. Hey, what's under the lid?

Actually, after today there won't be any more surprises, I think. Late this morning my nurse and I planned out all of tomorrow's meals. And by "planned out" I mean that she gave me a series of options for each part of the meal and I picked them, right down to salt and pepper packets. So we'll see if I really should have picked the beef stew over the quiche Lorraine for dinner.

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September 7, 2008

Had to go in for blood transfusions on Friday. That's #33 and #34, for a total of 46 overall. (For those who are coming into this late, the other 12 transfusions were for platelets. Blood is very important, but so are platelets -- please consider asking about donating at your local blood centre or blood drive!)

Because the stem cells for my transplant are coming in late on the 15th, the hospital shifted my transplant to the morning of September 16. Which is why the chemo starts today instead of yesterday, and why we're leaving today... actually, right about now.

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August 15, 2008

On Wednesday I went in for a followup, which of course means a blood test. My hemoglobins were still dropping, but I felt fine. I was given two options: get one unit of blood on Wednesday, then come back for another on Thursday or Friday, or come in on Friday and get both. Since it was approaching noon already—when everything in the oncology clinic slows down—and a transfusion, once it's started, takes about 105 minutes, I elected to come in on Friday. Besides, I felt great, right?

Wrong. By the time I got home, I was starting to feel fatigued. The next day was a bit worse, but in the afternoon, when I was alone at home and typing away on the computer, I felt myself starting to black out. I stumbled upstairs onto the living room couch, called Vicky—I could barely speak—and closed my eyes.

I eventually woke up and felt marginally better, but objectively I was a wreck, with my muscles aching and my head pounding. We called my hematologist (actually, Vicky did when I was semi-conscious) and when I spoke to her later she pointed out that I was probably anemic (which should have been obvious to me—all the signs were there) and that the headache and dizziness might be caused by the recent upping of the Hydrea, which we'd done to keep my crazy white blood count under control. My Hydrea dose was knocked down back down to its old level, and I stumbled through dinner, and eventually sleep.

This morning I woke up, muscles still aching and still damned tired, and forced myself to get out of bed so we could get to the hospital early. (The oncology clinic is always busy; five minutes can make all the difference between a ten-minute wait time and a two-hour wait time.) The strategy paid off; I got two units of blood in record time, with the new bag of blood switched out just as the first one ran out. I got in around 9:15, and was done pretty much at 1:00 on the dot, a new record.

(By the way, for those counting that's now blood transfusions #31 and #32, for a total of 44 transfusions overall.)

Usually after a blood transfusion I feel pretty peppy, but this time the difference wasn't as noticeable. I felt better, but still not particularly good; my muscles still ached, and I was still feeling tired. My blood pressure was low—something like 96/57—and my white blood count was still up there. I pretty much went straight home and straight to bed.

Some other news, though: while I was busy getting the red stuff, the Ottawa General Hospital left us a message at home. I'm going in for some preliminary testing next week, and the actual transplant date is starting to get a bit clearer: they're saying it'll be the second week of September. Right away, my hematologist picked up on the fact that I wasn't too enthusiastic. The plan, as you'll recall, was to get in the best shape possible so I'd be ready for the transplant. But right now I feel like the last few weeks have been piling up on me.

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August 2, 2008

After my 48-hour hospital stay two weeks ago, I was generally fine, though a little tired overall and with persistent nasal congestion. That changed just a few nights later. On Thursday the 24th, I was feeling pretty wiped out, which of course happens from time to time. But when I got into our new bed (we had ordered an adjustable bed because of my sleep issues, and it had arrived earlier in the day) I didn't really get out all that much until Sunday morning. During that time it got harder to even lift my head, and I was getting warmer, occasionally just over the borderline of being feverish. Speaking above a mumble was usually an effort. A constant headache and facial pain had me sporting cold compresses on my head and face, and bright light hurt my eyes. Worse, the nasal congestion meant I was sleeping with my mouth open, which meant I woke up with a dry and cracked mouth and a sore throat.

By Sunday morning, there was nothing for it. My fever got comfortable and settled in, and we knew it was time to go to emergency at the hospital. Vicky helped me slowly make my way to the car, and after we picked up my dad we were on our way. What follows isn't so much a narrative as a roughly chronological collection of experiences from after my arrival at the hospital.

One of my first thoughts when I realized emergency was inevitable was that I'd be on a gurney again—and of course, that was the case, though this time there were no pillows to be had. I was put in isolation again, just a few doors down from the room where I'd stayed my first night in emergency the last time. This room was comparatively spacious, with its own bathroom, a counter with a sink and stocked with supplies like compresses and gauze, and an examination table. When my mom came to stay with me at night, she somehow squeezed herself on the exam table—have I mentioned that I inherited my ability to sleep anywhere from her? Anyway, early the following morning my absolutely wonderful nurse managed to scrounge a clunky, old-school but full-sized hospital bed for me. When I rolled into it I thought I was in heaven, until she brought not one but two pillows. I fell into a blissful and very grateful slumber.

The day I was admitted my occasional coughing started to come just a little more frequently, along with a little chest pain. Of course, this prompted an EKG, and I had another visit from the tattooed nurse. (My eyes were pretty much closed the whole time, as they were most of the time I was in emergency; I only know it was the same guy because I kind of recognized his voice, and asked my mom about the tats after he was gone.) It also prompted later chest and sinus X-ray sessions.

The morning after I was admitted I had been started on antibiotics and I was feeling a little bit better, but just barely. At one point as I was leaving the bathroom I started coughing violently, more forcefully than I'd ever coughed in my entire life. My body shook and the world tilted, forcing me to hold on to the walls for support; my entire throat felt like it was expanding and contracting violently with each breath drawn and subsequent coughing fit; my vision blurred, distorted, and shook just as awfully; my eyes felt like they were ready to burst from my sockets; I spat up sputum, thick and white. And I just couldn't stop. When it was over I stood still braced to the walls, the inside of my glasses covered in tears, trying to figure out what had hit me. I later discovered that this was my body's way of expelling foreign matter from the lungs.

Over the next few days I experienced increasingly worse versions of that episode; my last one, in the middle of the night, had me crying and begging for it to just stop. By then, the entire circumference of my throat, from my jaw to just below my Adam's apple, was in pain, far worse than even the worst bronchitis I'd ever had.

I only spent one night in emergency; I was soon moved up to my old ward, as some space had become available. Because of some logistical quirk and the fact that I had to remain in isolation, I ended up alone in a room intended for four beds. We took to calling it the executive suite.

I got my 29th and 30th blood transfusions, which puts me at 42 transfusions overall. I really need to make a counter or something for the website.

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July 14, 2008

Was going to take a moment out to write yesterday about my two blood transfusions on Friday (#27 and #28, for a total of forty transfusions overall), and how I coped with the boredom by watching four episodes of Avatar: The Last Airbender and catching up on my Coverville music podcasts. (Best cover of the lot: Jimi Hendrix's All Along the Watchtower. Most, um, odd: Paul Anka's Eye of the Tiger.) It was surprising that I needed the tranfusions at all, as I felt quite energetic. But numbers don't lie, and my hemogloblins were low.

Anyway, the reason I didn't write about this yesterday is that I spent all day in bed. I woke up with a sore throat, a stuffy nose, a mild fever, and the sensation of my brain loosely floating in my skull and occasionally banging against the sides. So now we're off to the hospital, and I get to miss the last two films I wanted to see at the Fantasia film festival. I'm not sure which irks me more.

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June 29, 2008

On Wednesday it was noted that my hemoglobins were a bit low, so on Thursday I had to get two blood transfusions (my 25th and 26th, for those keeping count; my 37th and 38th overall). As I've mentioned before, the whole procedure is actually quite boring. This one was more so because (a) the clinic was completely full, and (b) there had been a mix-up with my cross-match, which meant it had to be looked for, determined to be missing, and then redone. Even though I got there at the respectable hour of 9:00 a.m., I didn't leave until 5:00 p.m.—a new record.

The time was passed by reading two Invincible trade paperbacks, watching two episodes each of Battlestar Galactica and How I Met Your Mother, reading a few articles in Interactions (an Association for Computing Machinery publication on human-computer interaction, or HCI), and listening to a Studio 360 podcast. Oh, and napping as best as I could.

It really is a lot of effort to do nothing all day. I went home and ended up falling asleep early.

Anyway, earlier in the week we loaded up the car with all of my immediate family (except my sister, who was at work) and drove down to Ottawa to consult with transplant specialists to get more information and decide which way to go in terms of my transplant. My original thinking had been to undergo a fourth chemotherapy treatment that would use different drugs in the hope that it just might put me into remission, as bone marrow transplants have a better chance of success if the patient is remission.

However, after speaking at length with the doctor, it seems that this isn't the best way to go. It's felt that these chemo drugs won't have a great chance of getting me into remission, a sentiment shared by several of the hematologists at the hospital (including my doctor) and myself. I already knew that, but was willing to go for the long shot. The specialist's experience, however, suggests that it would be better to get the transplant while I'm in the best shape possible—that is, as healthy as can be aside from the leukemia—rather than ravage my insides in the hopes of getting into remission.

What it comes down to is that any choice I make is a risky one; I just had to choose which path is, in the long run, the least risky. After thinking about it for a little while, I decided to go for the transplant as soon as possible, without being in remission. We haven't sorted out all the details yet, but assuming my schedule, the Ottawa Hospital's schedule and the donor's schedule all sync up, I should be undergoing the transplant procedure in late July or early August. I'll be spending the weeks leading up to that preparing in a variety of ways (more on that later) and trying to get myself in the best shape possible, through a careful combination of diet, rest and exercise. I'm also hoping to enjoy a bit of the annual Fantasia film festival, especially as it's probably the last film festival I'll be able to attend for 2008.

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May 26, 2008

I forgot to mention that last Thursday I received two more units of blood, bringing my blood transfusion count to 24 and my total transfusion count to 36. (I seem to be keeping a 2:1 ratio blood transfusions to platelet transfusions.)

The nice thing about blood transfusions is that afterwards I feel really energized. Otherwise they're incredibly unremarkable. This is especially true with a chest catheter, because there's no need to stick an IV in my arm; just plug and play. But what they lack in discomfort they make up with tedium. Here's how it plays out.

First is the cross match; a vial of blood is taken, and brought to the lab where it's tested against the units of blood meant to be used for the transfusion. (While they already have my blood type on file, the cross match is to determine compatibility against the units' antigens.) So that takes a little while. Then my blood pressure and temperature are taken, and if everything is good we start the procedure... which doesn't involve blood just as yet, but rather a saline drip.

When the first unit of blood is ready—each transfusion I've had to date has involved two units—it's added to the IV pump, which mixes it with the saline drip. Then it's just a matter of sitting and waiting, as it takes about 105 minutes to get one unit of blood into me. I usually spend the time reading, doing puzzles, writing, playing sudoku or sleeping—whatever's needed to pass the time. When I'm actually in hospital, it's no different from anything else because I always have the pump with me anyway. When I'm an outpatient, then I'm more or less confined to my chair, because there's nowhere else to go.

When the unit's done, the remaining blood is flushed from the tubes (and into me) with the saline, and I wait for the nurse to get to me. (On Thursday, the first unit ran out right in the middle of lunch hour, when the number of nurses on the floor drops to two. So I had to wait a little longer than usual.) Then she checks my temperature and blood pressure again, and if necessary we repeat the whole thing with another unit of blood, which we usually have to wait for.

Like I said, no pain, just tedium. Last week I got in around 10:00 and left around 3:00.

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April 18, 2008

Found out yesterday that I'd be heading home today, but didn't want to say anything for fear of jinxing it. At the time of this decision I was still below the usual neutrophils threshold (I'm at 0.2, previously I was released when I hit 0.5), but it was felt that with gastroenteritis still going around—there was a new case the day before—I wasn't any worse off at home than here, so long as I had my usual battery of antibiotics, antivirals and antifungals. I also have to come in for a blood test on Monday so they can make sure the neutrophil levels are progressing.

There was just one moment when I thought I might not get to come home today; last night I had one of my occasional incidences of tachycardia, where my heart starts beating hard and fast for a while, then settles down. The first and most intense episode I ever had was in 1991 (coincidentally, just a few minutes after I conceived of Frames Per Second); since then it's been something that happens every once in a while then goes away in two or three minutes, max. Last night, while I was talking to one of the nurses (mostly both of us saying, "Yay! Going home!") I had another episode, but this one lasted longer—I'd guess it was five minutes before I realized it was still going on—and I started to break out in a sweat. I mentioned it to the nurse, and we checked my pulse on the machine: it read 192 beats per minute, a measurement neither of us believed until she confirmed it manually. She ran out, called the resident on call, and set me up for an EKG—but by the time the last sensor sticker was on me it was over, and the EKG just registered a normal heartbeat. (This is why I haven't bothered bringing this up with a doctor since, oh, 1992.)

Anyway, my fear was that I'd be kept here for observation, when I knew there'd be nothing to observe. It turns out the resident agreed (especially when I told her how long I've been experiencing these episodes), and I am indeed heading home in just a few hours. Since my platelets are getting kinda low and I won't be in until Monday, they're transfusing me just to top me off (12th platelet transfusion, 34th overall), but I'm only getting a half-dose of Benadryl. No more weirdness or grogginess, please and thank you.

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April 14, 2008

Joni Mitchell was right—you don't know what you've got till it's gone. For a few days I was wondering why it seemed I as constantly getting bits of dust in my eye. Vicky was the first to notice: my eyelashes have almost completely disappeared. Closer inspection also revealed that my eyebrows were thinning. In fact, I've only just noticed that my hair has thinned out all over my body. (By comparison, during the first chemo most of my body was just fine—as evidenced by how much it stung to pull medical tape off my chest every day.)

Again, this is better than some of the other possible side effects. Remember how I mentioned one person who was temporarily blinded by the cytarabine? I neglected to mention that he's also suffering from short-term memory problems. As he said to me when I was visiting him, if I told him my phone number and immediately left the room, he'd forget it by the time I reached the door. Scary, scary stuff.

In other news, today my hematologist brought me my blood products history. I now have a detailed breakdown: between December 27 and April 11, I've received 22 blood transfusions and 11 platelet transfusions. Speaking of which, my last platelet transfusion was the worst in terms of my reaction to the Benadryl. No freaky dreams this time, but my head was messed up for hours after I woke up from my drug-induced nap. Normally, I eat and go for a walk to clear my head, but this time I was so zonked I didn't trust myself to walk. It's a good thing I decided to stay in my room, because for the next three hours or so I'd alternate between being completely zoned out—I had to lie down and couldn't keep my eyes open, though I wouldn't sleep—and hyper-alert. Sometimes I'd switch from one to the other in seconds, other times in minutes. Even when I was finally, really awake, I couldn't maintain my focus on anything for too long. Eventually the mental strain of it all exhausted me and I just went to sleep. For my next platelet transfusion, I'm going to risk some of the hives and ask for a half-dose of Benadryl. I'm not sure I can stand the effects of a full dose anymore.

Finally, a kinda funny story from last night: I had just finished writing a bio for the African Caribbean Leukaemia Trust and was going to take a break. Because of how I was sitting, I had to move my line (the tube that connects the IV pump to my chest catheter) out of the way first. So I reached around for it, and it wasn't there. I turned, and I saw part of the line on the bed, dribbling out the saline solution onto the sheet. Yikes! I clamped my catheter line to prevent anything from flowing in or out, rang the call bell, then pulled the release on the pump to deactivate the pump. Then I looked at my line, afraid that it would be empty of fluid—that would mean that air had gotten into the catheter, presenting a risk of infection or an embolism—and was relieved to see the meniscus (the little ball of liquid) at the top of a filled line. Pressure had kept it from draining, thank goodness.

When the nurse showed up I explained what had happened, and that I'd clamped my line and deactivated the pump. She said, "You did exactly what you should have done. It's like you didn't need me at all!" (A running joke around here is that I can start moonlighting as a nurse, considering the things I do or figure out for myself.) "Well," she continues, "Let me check your line to make sure no air got in." "Um, I already did. It's fine," I reply, holding it up.

The look on her face was priceless.

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April 11, 2008

Getting platelets today. Add in yesterday's two blood transfusions and that makes #33.

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April 7, 2008

As in, my 30th transfusion. I'm getting platelets very shortly, which means I've just finished receiving a 50 mL dose of Benadryl. Let the fun begin.

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April 4, 2008

A minor correction to my last post: These are my 28th and 29th transfusions overall. I haven't yet got the exact number of blood and platelet transfusions.

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Don't dig the title? Then you cats aren't up on your 1950s novelty songs.

Anyway—just got my 28th blood transfusion, and will soon get my 29th. Just to keep count.

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A bit before noon today I found out that I was getting my 27th transfusion, this time of platelets. No surprise there, my platelet level has been hovering around the threshold for a transfusion for a few days now. However, the very first time I had a transfusion of platelets I broke out in hives, so now I get dosed with Benadryl through my IV before the platelet transfusion starts. The thing is, the Benadryl puts me to sleep pretty thoroughly, and I hadn't had lunch yet. And I was starved.

The platelets arrived pretty quickly, so I was started on the Benadryl not long after I was given the news—around 12:30, I'd guess. After about 15 minutes, I started to feel its effects, but lunch hadn't arrived. One of the housekeeping dudes showed up to empty the garbage cans and clean the room, and I started working on some variety sudoku to keep my brain going so I wouldn't just conk out. (I use puzzles like smokers use cigarettes—they can get me going or they can mellow me out, depending.) I had just solved the second puzzle when he finished mopping and put the wet-floor warning on the ground—and not two minutes later, my lunch arrives. Sharlene, who brings us our meals during the week, was rightly apprehensive about carrying the tray (it's not light) on a slippery floor, so she said she'd leave it on the reception desk just outside my room and bring it in in a few minutes. No problem, says I.

I'm just about finished another puzzle when I hear my name being spoken outside. I catch just a few bits:

"...Mr. Townsend's lunch."

"Is he not eating?"

I suddenly realize my lunch is in danger of being thrown out. I jumped out of bed, reached out for the IV pump, missed, realized that I was getting spacey and had to be careful, and got out there and asked the dietitian to bring my lunch tray in (she just happened to be the first person whose attention I could get). Phew! Lunch was saved.

I ate at a brisk but reasonable pace, did another puzzle to give the food a chance to settle a little bit, then curled up under the covers and fell asleep pretty much immediately. I then proceeded to have a really, really weird dream involving a shape-changing, dimension-hopping assassin who wanted me dead for some reason. Fortunately, I was also a dimension-hopping shape-changer, so I wasn't defenseless. The entire dream was epic, action-packed, at times psychedelic. It was also extremely vivid, and felt utterly real.

Suddenly I snapped awake. I shook my head at the strangeness of it all and went back to sleep—and wouldn't you know it, I have another bizarre dream, in which Steve Jobs has hired a goon to have me severely beaten because of something I've done. Turns out it's a case of mistaken identity, and his actual target is another Emru, a woman who is also a well-known but unstable amateur folk singer who has uncovered a government conspiracy involving bone marrow donor centres and is somehow, but for unrelated reasons, threatening Jobs. Like the first dream, it was very tangible.

I usually have pretty loopy dreams, but these two back to back were something of an experience. After I woke up, I had to spend a few minutes grounding myself in reality again.

I'm not sure if I'm looking forward to the next platelet transfusion or not.

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March 29, 2008

We were extremely fortunate that the media blitz occurred when it did. I was at peak energy, and I could speak.

That last point is the important one. Today, a common chemo side effect that had been starting to creep up on me really took hold: mouth sores.

Chemotherapy often strips mucous lining from your body—so often, everyone was surprised when it didn't happen to me at all the first time I went through chemo. One of the effects of that is that you lose most of the mucous protection in your mouth, so you develop mouth sores and ulcers, which can make it hard to eat, speak or swallow. I had micro-sores and a few ulcers last time for about six days, which meant a diet of pureed food (as well as popsicles, Jell-O, yogurt and applesauce) and regular use of two different kinds of lidocaine mouthwash. Affectionately termed magic mouthwash and pink lady, the first one was a swirl & swallow that would make it easier to eat and swallow painlessly; the second is stronger, not meant to be swallowed, and numbing. It's so numbing that it's dangerous to eat while it's effective, because your body can't read the cues it needs to direct the flow of substances from your mouth.

The sores are better and worse this time. Better because we saw them coming and so switched to pureed food earlier (minimizing irritation) and also because it's not so bad that I need pink lady. That stuff is nasty. The sores are worse this time because they go farther down my throat, which makes swallowing a little bit of an effort. Nothing huge—I just have to get accustomed to an extra step in the eating process. It's like there's a little air bubble in my esophagus I have to get past. Under my tongue is also affected, which makes it hard to move food around. Like last time, the sores are mostly on one side of my mouth, so some chewing has been possible of really soft foods—but now it hurts to get the food where it needs to go. I'd also like to take this opportunity to mention that tastewise, pureed food hasn't been so bad. In fact, I prefer the hospital's salmon & pasta dish better this way. And the vegetables are never overcooked.

Right now, the sores make it hard to speak, so I won't be answering the phone much. So to bring this back to the beginning, it's a good thing I had to do all that talking two days ago and not yesterday or today.

Got my 26th transfusion today—platelets this time, though the need was only borderline. Because I have an allergic reaction to the platelet transfusions, they have to give me Benadryl first. So I was asleep and/or loopy for a while. I also sometimes suffer from night sweats (due to the diabetes insipidus), which I find is really horrible to wake up to in the middle of the night. When they start happening, I start to fret about sleep, to the point where I need an anti-anxiety med before bed so I don't clench my teeth while I sleep. All of which to say I was doped up before and am doping up now, so if this is a little rambly, well, now you know. Maybe if I stopped listening to Fantastic Plastic Machine while I was typing it would help as well.

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posted by Emru Townsend at  | 0 Comments | Links to this post

March 21, 2008

After my posting about donating platelets as a way to get around paying the cost of donating marrow in Denton, Texas, I was curious about how many transfusions I've received. I couldn't get the exact breakdown between blood and platelet transfusions, but including the two blood transfusions I had today, I've had 25 transfusions since mid-December, when all this started. Wow.

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posted by Emru Townsend at  | 0 Comments | Links to this post

[For the more sensitive souls in the audience, all curse words in this message have been replaced with their Battlestar Galactica equivalents.]

So early this morning I had a little freakout. it was around 4:00 or 5:00 a.m., and I was catching some Zs between my frequent dashes to the bathroom (6 liters of fluid over 24 hours, remember?). Suddenly I wake up and there's a man standing at the foot of my bed. He's not a hospital staffer. He's an aboriginal dude, wearing a winter jacket over a hospital gown over pajamas. He's not looking at me. He's staring out the window, and he's clearly saying this word that I don't understand. In my head I'm screaming, "What the frak! What the frak!? What the frak?!?" but what happens instead is I turn on my radio voice and boom, "Wrong room!" The guy looks at me, turns around, and shuffles out the door.

Now, this is remarkable. Because I'm a sound sleeper and I've been paranoid about laptop theft (I didn't get the locks I needed until today), I'd rigged a little nighttime alarm in my room. This particular bathroom door just won't stay ajar; if it's not closed all the way, it happily swings open, becoming an obstacle for the room door. Normally it's a pain, but at night it's great; someone who just walks in will bang the door, startling both them and me. This guy, however, must have shuffled in the way he shuffled out, so he never hit the door and I dozed merrily until I realized someone was in the room.

Of course, I couldn't sleep after he was gone. When the nurse came in to do my bloods (which is usually around 6:00), I explained to her why I was already awake and alert. She said, "I've been chasing that guy all night!" Apparently at 11:00, after his family left, he put on his clothes and tried to leave. Since he's a bit disoriented, he's just been trying every door he finds, hoping to find an exit. She finds him, puts him back in his room and explains that he has to stay, and then it starts again.

(I've seen this happen before, coincidentally with another, younger aboriginal guy, just last month. I was out for my afternoon stroll, and this guy was walking out with his friend when a nurse stopped him and asked where he was going. "I feel fine. I'm going home," he said. "It doesn't work that way," said the nurse. "You're still sick." His friend looked like he'd been punched in the gut; he probably had no idea that they shouldn't be leaving.)

Other, less exciting stuff going on. My chest discomfort (I still can't call it pain—I barely notice it most of the time) is persisting and just marginally worse, so I'm getting four daily doses of milk of magnesia in case it's acid reflux. Yum. My hemoglobin count was low, so I got two blood transfusions today. (I found out that, including those, I've had 25 transfusions of blood or platelets since my first hospital stay. Remember, the marrow is crucial, but donate blood and platelets too!)

I finished my etoposide regimen today, thank goodness. It's had me running to the bathroom nonstop, with sometimes as little as ten minutes between visits. The only other side effect has been a little bit of persistent stomach discomfort, along with some water retention (my feet look like sausages, with five little sausages on the end, but my skin looks great). The cyclophosphamide started this evening, and it's not quite as intense. For one thing, it's not constant: I get it for two hours a day, probably over the next four days (I don't have my copy of the order on hand, so I'm going from memory here). Unlike the etoposide, which was a mere 20.8 mL per liter of saline, the cyclophosphamide is 190 mL per liter of saline. So clearly it's not as bad-ass. (I might regret saying that.) One difference is how fast they pump the stuff into me. The etoposide was coming in at a steady stream of 203 mL/hour for 64 hours; the cyclophosphamide is being delivered at 519 mL/hour for these two-hour bursts. It doesn't feel any different, but... dang. Oh, and every night after the cyclophosphamide is done I get a diuretic. More bathroom visits! My nights will be fun, I tell you.

Bit of a media blitz this week. The Chronicle, a weekly newspaper that comes out in several editions in Montreal, had a front-page story on me (with a great picture of me and Max) on Wednesday, then on Thursday another Montreal weekly, Hour, ran a story using one of Vicky's photos of me with the caption, "Who says chemo can't be sexy?" The website is almost always up on one of the computers in the nurses' station, and it caught the attention of my hematologist, who's (a) really impressed by the amount of work we're doing on it and the people who have helped out, and (b) astonished that I'm doing all this work on dialup.

Huh. My chemo dose just ended, and without thinking I punched the keys to set the IV pumps to clear out the overfill from the bag to save the nurse the trouble. I've really been here too long.

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posted by Emru Townsend at  | 0 Comments | Links to this post

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