Music is a big part of my life, and one of the first things I did as I packed for the hospital last year was fill throw a couple of gigabytes of music onto my PSP. It didn't take long for favourite songs to emerge, based on mood or pain management. Here's a rough idea of my playlist necessities.

Fight Songs
These are the songs I listen to when I have to focus past pain or extreme discomfort. They get my blood pumping, my adrenaline up, and sometimes just plain angry enough to deal. Most of these songs involve some form of protest (sometimes political, sometimes not), or at least an element of flipping the finger at somebody, somewhere.

- Almost anything by Michael Franti and Spearhead, but to really get me going it's "Rock the Nation," "Yell Fire," or the remix of "Bomb the World" with Sly and Robbie.
- Lo Fidelity Allstars: "Warming Up the Brain Farm" and "Battle Flag"
- Red Hot Chili Peppers: "The Power of Equality." "Can't Stop" isn't actually a fight song, but it's energetic and of course the title is appropriate.
- LL Cool J: "Mama Said Knock You Out" (the definitive "I'm not going to take this crap" song, and the source of my recent "Don't Call It a Comeback" title)
- Artists United Against Apartheid: Remember the feel-good "Sun City"? "Revolutionary Situation," off the same album, is the this-is-why-we-get-up-and-fight track.
- The Pop Will Eat Itself (PWEI): "Bulletproof," as the title implies, is a great "I'm invincible" song, but for a true fight song "Ich Bin Ein Auslander" has a hard-driving beat, and is a stark look at the alarming rise of the extreme right in Europe in the mid-'90s. Sample lyric: "And when they come to ethnically cleanse me/Will you speak out, will you defend me/Or laugh through a glass eye as they rape our lives/Trampled underfoot by the rise of the right." Whenever I listen I think about how this is still going on elsewhere, and still needs to be fought.
- Public Enemy: "Night of the Living Baseheads," "Rightstarter" and "Prophets of Rage." Can't touch 'em.
- Meat Beat Manifesto: "Acid Again." This is only a fight song in my mind; I choreographed a space battle scene to this song years ago.
- Geinoh Yamashirogumi: "Kaneda," the opening track from the movie Akira. (It's played during the motorcycle gangs' fight.) It's all drums and chanting, and it doesn't let you go.
- The Prodigy and PWEI: "Their Law." One of the few lyrics in the song is "F--k 'em, and their law." Clearly an appeal to disenfranchised or alienated youth, but damn you can dance to it.
- Consolidated: "Tool and Die," "Guerillas in the Mist," and "Crackhouse" are some of the most pointed works they ever did on inner-city problems. And, again, you can dance to them.
- Fishbone: "Fight the Youth." Another response to the mid-'90s rise of hate groups.
- Oasis: "F--kin' in the Bushes." Damn, those kids can rock hard.
- Gary Clail's Tackhead Sound System: "What's My Misssion Now?" Classic '80s British industrial, on the subject of America's military spending.

Songs I Listen to at Night
Again, these are the essentials. I notice they're mostly albums, rather than single tracks.

- David Sylvian: Weatherbox and Weatherbox Instrumental. Soothes even the most troubled soul.
- DJ Spooky: Celestial Mechanix: The Blue Series Mastermix. Two CDs worth of mixes that put me into a contemplative state.
- Miles Davis: Kind of Blue.
- Pop WIll Eat Itself: "X, Y and Zee," from the Cure for Sanity album. Upbeat, poppy, only slightly melancholy. Sample lyrics: "This is the time, the time of our lives/Escape in time for the all-time highs/Of love, lust, laughter that make us sweat/Let's simulate sensory amplification/This is PWEIzation/This is this, it's the living end/'Je t'aime!' 'Encore!' 'Je t'aime!'"
- Quincy Jones, Valerie Simpson vocals: "Bridge Over Troubled Water." This is the version I grew up listening to and is, so far as I'm concerned, the best one. One night in February my fever spiked so bad I spent hours clutching ice bags to my body. I listened to a lot of my fight music to focus past the intense cold, but when I played this song in the early morning I just started crying.

Honestly, though, the one song that always makes me stop what I'm doing comes from Santana's Supernatural: "Put Your Lights On." Aside from the fantastic instrumentation, Everlast's vocals are incredible. It came up randomly when I was alone one night in the hospital in January, and couldn't sleep. These lyrics in particular really spoke to me:

Hey now
All you children
Leave your lights on
Better leave your lights on

'Cause there's a monster
Living under my bed
Whispering in my ear

There's an angel
With her hand on my head
She say I got nothing to fear

There's a darkness
Living deep in my soul
Still got a purpose to serve

So let your light shine
Deep into my home
God don't let me lose my nerve
Don't let me lose my nerve

Labels: Emru

So last night I decided to shower—my first deep cleansing since the pneumonia decked me—in an effort to work out some of the aches in my muscles before I went to bed. I've mentioned before that showers are a time for me to think, and this one was no different. I had a startling epiphany where I realized that my attitude started to take a downward turn after that whole gurney affair last month. In fact, I had the specific moment: It was when I thought that the gurney had beaten me.

Ever since that moment, I've been acting beaten. Vicky has commented more than once that my posture is more slumped; I've been speaking in a quieter voice; my posts have become increasingly negative.

Frak that noise, I decided. Nothing has ever beaten me down in the past, and nothing's going to beat me down now. I realized that every pain and discomfort I'm feeling now is nothing compared to other pains I've experienced over the years. Enough, already. Time to stand up straight again and face this leukemia down.

Labels: Emru

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.

Labels: Emru, transfusions

Just a few updates from the last five days.

On Friday morning my mother told me that my grandmother had died the night before. Like my grandfather last year, it was pneumonia that did her in. (See, I was right to be worried before.) She was 93, passed peacefully, and one of her granddaughters—arguably the one grandchild who spent more of her childhood with her than any other—was with her. Honestly, I can't think of a better way to go.

I have a lot of memories about my grandmother, but there are two that have stuck out in my mind since Friday. One: Her Scrabble skills were razor-sharp. It didn't matter if her opponents had more schooling, she would whup all comers. She was pretty formidable at Boggle, too. Two: No one in the world has ever made homemade chocolate-chip cookies as good as hers. Ever. Suggesting otherwise will earn you hostile glares—if I feel like letting you off that easy.

I spent enough time in Kingston, Jamaica as a kid that I consider it one of my three home cities (Montreal and New York are the others). With my grandmother's passing, the three family members I saw most often when I was there are gone. Going to Jamaica won't feel right without them there.

Saturday, of course, was awesome. Sunday was less so, but still pretty good. I was still a bit bummed about missing the SIGGRAPH conference, but several compatriots have been sending me updates (and a great personalized video!), so I don't feel too bad. I've also decided to attend in spirit with a series of photos.

When I went to get my shots yesterday I also had a blood test. My hemoglobins are down, but since I felt (and still feel) reasonably energetic, I elected not to receive a transfusion. My white blood count, however, has skyrocketed. Since the azacitidine shots often depress the white blood count, my hematologist took me off the Hydrea. But with these results, I've ended up going back on them.

The down side to going back on Hydrea is the effect on my mouth. It's not as harsh as my earlier chemotherapy regimens, but Hydrea does reduce some of the mucous in my mouth, making it a little more difficult to eat. Really, I just had to be careful. However, the azacitidine has the same side effect, and it's starting to kick in as well. Last night I gingerly but greedily enjoyed pork souvlaki with rice, vegetables and naan bread; this afternoon I couldn't eat a tuna sandwich with soft bread. It's back to soups and potages for me until things get better. There's also the fact that, as before, more foods just aren't tasting right. I have what should be a tasty glass of chocolate milk with me now, but I took a swig and it's actually kind of revolting.

(I should confess that I've been toying with the idea of pureeing a tuna casserole. After all, the one in the hospital wasn't bad, and I'm sure my casserole would be yummier. Still, it seems like sacrilege somehow.)

With all that said, today was my last trip to the hospital for azacitidine shots. Since last Monday I've received seven injections on each side of my abdomen. The needles are tiny and in the hands of a good nurse the shots don't really hurt, but after all the jabbing my abs are extremely tender. I'm glad this phase is over.

Labels: Emru

Whole books have been written on this subject, but today I nailed it in five steps:

Step 1: Watched my son's soccer practice.

Step 2: Made and ate a mean tuna-fish sammich.

Step 3: Spent almost an hour on the phone with my best bud.

Step 4: Successfully completed this mathematical equation: 1 sunny afternoon + 1 volume of Popgun + 1 comfy chair + 1 bowl containing a 2:1 ratio of Reese's Pieces to chocolate M&Ms + a half-pint of root beer + DJ Spooky's Celestial Mechanix: The Blue Series Mastermix for background music

Step 5: Nap.

So what if I woke up sweating ten minutes ago and my stomach still feels like a pincushion after a week of two daily abdominal injections? I honestly don't care.

Labels: Emru

While I was still in hospital on Thursday—in fact, in the middle of a conversation with my hematologist—I noticed a small bump on my right forearm. It looked kind of like a bug bite, but didn't really feel like one. I pointed it out to her and she said we'd keep an eye on it.

Saturday morning I woke up with a lump pretty much like the first one, only this time on my abdomen. This one was a bit different; it was tender like a spider bite, but the lump itself was harder. Two lumps in three days? While watching Max's soccer practice I got on the phone with the oncologist on call and made an appointment to come in the next day.

The entire time I was, of course, quietly freaking out. Having one form of cancer makes you more susceptible to others; hell, even cancer treatment can make you more susceptible. The suddenness of the lumps' appearance was bothering me, and I kept checking to see if others were showing up.

Sunday morning I was at the hospital, and the oncologist on call looked both the lumps over, pinching them, rolling them a bit between his fingers, and asking me a barrage of questions about when they appeared, how they felt, and so on. Then he disappeared and got on the phone with my hematologist. The verdict: they probably weren't life-threatening, but I should bump up my checkup from Wednesday to Monday.

And so this morning we went through my usual checkup routine. I got a blood test and a catheter dressing change in the oncology clinic. Then Vicky and I froze to death in the waiting area for my hematologist. (The clinic was unusually quiet, so I sped right through, which had us waiting longer for my hematologist.) When it was finally time, my hematologist also did a physical exam. When I sat back down she said, "Like I thought, it's the leukemia."

I didn't miss a beat. "How is it the leukemia?"

"Sometimes it 'leaks' from the blood and gets under the skin."

"So it's a tumour."

"That's right."

Dammit, dammit, dammit. Months ago, when I was looking and feeling great, she'd made the comment that I didn't "have rip-roaring leukemia." Now, with the transplant so close, I'd had three infections and now this? I visualized myself sprinting hard on a track, racing against the leukemia to beat it to the transplant date at the finish line.

Already prepared, my hematologist gave me the course of action. I was to start one of the chemotherapy treatments I was going to do before we met with the transplant specialist; an outpatient procedure where I'd get seven injections of Vidaza over nine days. Vidaza on its own wouldn't be as hard on my system as previous treatments—I'd keep my hair, have no mouth sores, and the potential for nausea would be far lower—which meant it wouldn't interfere with my transplant readiness, but it should slow the leukemia's spread. Because I'd already been cleared for the Vidaza, treatment started today; I went straight back up to the oncology clinic, waited through the noontime rush, and got two injections in the abdomen.

Interestingly, when I pointed out the abdominal bump, my nurse noticed a black dot right on top of it—a sign that it might just be some fluid trapped under there from my Lovenox injection last week. It so happened that my hematologist was there, and when she looked at it again she concurred, especially since it was more tender. "Do you mean to tell me I just spent thousands of dollars in treatment for nothing?" she joked. (This is why we like her.) She still felt the first lump appeared and behaved exactly like a tumour, and I may get a biopsy to be absolutely sure. But with the finish line so close, we're not taking any chances.

Labels: Emru

When you go into hospital, every new doctor you meet asks about your condition and does some kind of exam. I'm generally in favour of this; not every doctor asks exactly the same questions in the same way, and each one picks up on different words or comments you make, so everyone backs each other up. But I meet a lot of doctors on these occasions; at least one in emergency, and when I get to the ward there's the team of senior and junior residents, a med student, the doctor in rotation, and of course my hematologist at minimum. Sometimes they come alone, or in groups, and at least when they're in groups only one does the physical exam. Like I said, normally not a problem. But when your sinuses are in agony and each exam involves someone pressing their fingers or thumbs against them or tapping them, you just want to shout, "Enough already!"

So it turned out that what was plaguing me was sinusitis. Some bacteria had gotten in there and was making my life miserable. The antibiotics regimen was helping, but what was really needed was to drain the mucus and other crud from the sinuses and keep them clear so the antibiotics could work most effectively. That meant irrigating them on a regular basis—taking 5 mL of saline, squirting it up one nostril, and then letting it drain out the other. You have to tilt your head back as you squirt with reasonable force, and slowly rotate and eventually raise your head to guide the saline through the sinuses, then let it run out, snorting a bit at the end to release any gunk that was loosened. It's not pleasant; it feels a bit like standing on your hands at the bottom of a pool and deliberately letting water get in, and you have to alter your breathing a bit so you don't close everything off, but you don't let it drain uselessly down your throat either. I have to do this every three hours. For best results, that includes during the middle of the night.

Whenever I was able to focus a bit, I read and did puzzles to keep my mind off my discomforts. One book I read was Soon I Will Be Invincible, a story set in a world of superhereos and super-villains, told through the alternating narratives of the arch-villain and a rookie superhero. It's a fun and loving deconstruction of comics, but there's a part where the villain is relating the lab accident that gave him his powers. I read it the morning after a vicious late-night coughing fit, one where I was still in a half-dream state at the same time, which was too strange for words. The passage read: "I wanted to faint, leave my body. When you can't bear something but it goes on anyway, the person who survives isn't you anymore; you've changed and become someone else, a new person, the one who did bear it after all." I've been thinking a lot about that passage as it applies to my different experiences since my diagnosis.

I had to be given daily injections of Lovenox, a blood thinner. The injections were in the abdomen, which aren't as bothersome as I thought they'd be, but unlike earlier promises they didn't sting that much less than in the thigh. I broke one of my cardinal rules and made a joke about the name (pronouncing it "Love-nox" in a Barry White voice), which made the nurse laugh while the needle was still in. Not smart.

One morning I woke up and I finally felt like a human being again. Not a particularly energetic one, but human nonetheless. Like old times, I got up, put on a mask and gloves and did a tour of the floor. I decided to stop at the computer room to check my e-mail—I had closed an eBay sale during my previous hospital visit and wanted to reassure the buyer that I hadn't disappeared with his money—and of course the community computer wasn't working. I ran into an orderly who was just starting his first day and we chatted a bit. I welcomed him to the floor, and not for the first time reflected on how much the ward felt like home now.

I was eventually moved to a smaller private room, one with its own air treatment unit (99.97% HEPA, it said), a great view, and a George Jetson chair next to the bed. Later I walked the floor again and realized I'd stayed in 10 of the 20 rooms over the last eight months.

My hematologist and I talked about how drastically things had changed. My white blood count was stabilizing to normal levels and my neutrophils were okay, but they clearly weren't doing their job; I'd had three infections (cellulitis, pneumonia and sinusitis) in two months, the last two very close together. In earlier weeks we'd spoken to the transplant specialist in Ottawa, and my approximate transplant date had been moved from late July/early August to sometime in September because of logistical issues plus the fact that my leukemia was stable. The latter factor no longer being the case, my hematologist worked with them to move things up a little. My donor has been activated (i.e., notified and beginning further tests in preparation for the stem cell harvest), and I should be receiving my transplant at the beginning of September. Until then, I've got to keep from catching another infection, so she prepared a new drug regimen, built on top of the old one.

Early Friday afternoon I was finally discharged. I could walk on my own power, but with frequent rest stops. Vicky and I went to the pharmacy to pick up my next month's worth of medication:

- Allopurinol, to prevent gout and keep my kidneys clear (once a day)
- Ativan, if I need help sleeping at night
- Clavulin, an antibiotic (twice a day)
- Desmopressin, for my diabetes insipidus (twice a day)
- Hydrea, to keep my white blood count down to normal (twice a day)
- Magic mouthwash, to ease the discomfort in my mouth (the Hydrea has been stripping the mucus from my mouth over time, making eating harder; four times a day)
- Pantoloc, to help with my reflux (once a day)
- Saline, to continue irrigating my sinuses (every three hours)
- Vitamin D, as part of a med student's lab I volunteered for (twice a day)

It took an hour for the pharmacist to prepare everything.

Labels: Emru

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.

Labels: Emru, transfusions

Before I can fully explain Tuesday night at the hospital, I have to tell you a few things.

First, something that a few people reading this know: I have long had the ability to sleep—easily and completely—anywhere. And I mean anywhere. In the past I've slept across three rickety chairs barely suitable for sitting, in a rickety bus travelling on a road that even pothole-hardened Montrealers would find daunting, and on an abandoned tennis court in the Adirondacks. (Last year I even fell asleep standing up, but I think those circumstances were a little extreme.) Honestly, the only person who can match me in this area is my mother. It's a great asset for travelling.

Second, as others reading this can attest, I can sleep through anything. Once I'm asleep, I'm asleep, and no amount of sirens, shouting, or room-shaking loud music can wake me. This is why that whole incident back in February with the disoriented hospital roomie who was shouting at the top of his lungs for help didn't affect me at all.

Third, sleep itself is more difficult these days. Between my chest catheter (it's no fun rolling onto the clamps' pointier ends) and my injured shoulder, it's hard to find a comfortable position to sleep in—never mind the need to keep my fat left foot elevated, on top of that. Add to that my night sweats, which are getting worse along with my body's decreasing ability to manage its temperature, and, well, you get the picture.

All of these things came to a head on Tuesday night. When we talking about that night, the first thing my mother mentions is the poor disoriented woman who was screaming for two hours. That was the least of my concerns, as I was able to sleep through a fair bit of it. The problem was getting comfortable enough to get to sleep and stay asleep. Not only was I sleeping on a narrow gurney, it was cold in emergency (at least to me), which made it hard to balance my need for cover with my need for ventilation to keep the sweats at bay. Being attached to an IV pump and the newly minted upper back pain made it worse. When I could get to sleep, I couldn't stay asleep. When I came back from the bathroom in the middle of the night at one point, I thought, "That damn gurney might actually have beaten me." Late I woke up gasping after a particularly bad attack of the night sweats, changed my clothes, and came to the realization that i was actually afraid to try to go back to sleep.

I eventually did, and despite one minor sweat incident, managed to sleep in two two-hour chunks. But although I felt better in the morning (good enough to navigate the hallways and elevators and pay my hematologist a visit), I didn't really have a good night's sleep and tried to avoid lying in the gurney. When I got ready for bed at home later that night, I actually said, "Thank God, a bed"—something I have never uttered in my entire life.

It would be nice if this story had a happy ending. It kind of does, as I was released with five days' worth of look-at-the-size-of-those-things antibiotic tablets, and the pain in my back went away. But sleep is still increasingly problematic. It has nothing to do with the hospital stay, but it's a nightly reminder. And that's just no fun.

Labels: Emru

Monday night in emergency is something of a blur for me, because I didn't get a good night's sleep at all. It was very cool in the room, so I was fidgeting as I alternated between being too hot and too cold. Also, I was constantly being visited: I had a blood culture taken when my fever spiked at 39 degrees, I was visited by my hematologist before she left work as well as my old CEGEP buddy when his shift ended (at midnight!), nurses came in to get my vitals every few hours as well as an early-morning blood test, a nurse with an awesome tattoo (as far as I could see—I was too tired to ask him about them) came in to do an EKG, and one of the doctors I knew from my last stay, who happened to be doing her rotation in emergency, stopped by. Factor in the late arrival of my desmopressin, which had me making a few extra visits to the bathroom, and you can see why everything was a little messed up.

I did get an hour or two of sleep in at the end, and when my eyes opened I realized I didn't feel quite as out of it as I had on Monday. Then I sat up quickly and felt a sharp pain in my upper back that sent me right back down. It seemed I had slept in a funny position, and the sudden shift didn't help. Ow.

Gingerly, I got myself into a sitting position and found that I was actually able to sit up and read a magazine, something I was totally incapable of the previous day.

Vicky came by to relieve my mom of her shift, and brought me some fresh clothes. We waited to find out what was happening with me, and discovered that they were waiting to admit me, if only they could find a free bed upstairs. Eventually, once it was determined that I wasn't neutropenic, I was moved to a different unit within emergency (the green unit) which was smaller and far quieter overall, but didn't have any separate rooms—so I got to hear the conversations and occasional plaintive cries during those few times I was awake. Eventually my mother came back to relieve Vicky and, after a few puzzles and a short walk, I settled in for the night's sleep.

Labels: Emru

So here we are, on Wednesday afternoon. A few hours ago, I finally got home from what I had hoped would be a short hospital visit.

What happened? Well, I arrived at the hospital Monday morning feeling weak, after having spent all of Sunday in bed, pretty much too weak to move and occasionally drifting into a mild fever. Vicky had spoken to the oncologist on call (who happened to be my hematologist) and she said if I didn't improve, to come in the following day.

So I did. My nose was stuffed, my throat was sore, my head ached, my chest hurt and although I could walk or talk neither was something I wanted to do for too long. Vicky, my parents and I got to the hospital and I headed straight upstairs for a vitals check and blood test, with a note that I should get a blood culture if I had a fever.

I should mention here that blood cultures are standard for fevers; if you saw that picture of me in the Gazette in March, I was having one done at the time. Blood cultures are blood tests used to check what, if any, bugs have gotten into your system. Just in case the fever is brought on by an infection in the chest catheter, there are three groups of blood draws. One from the each line of the catheter, and one from the arm. I hate blood cultures for two reasons: (a) it takes days to get the results, so you're on pins and needles wondering what you've got, and (b) I hate getting stuck in the arm.

So anyway, I didn't have a fever, but I muttered that I knew I was gonna get stuck sooner or later. After seeing my hematologist (who noted that some of my sinusoidal area was ever so slightly tender), I was directed to get a chest X-ray and a sinus X-ray. Vicky and I went downstairs, registered, and sat in the waiting room.

And then suddenly, everything went weird. My balance went a little off, and it looked like I was seeing the world through a mass of light purple blobs. It slowly started to get worse, and I mumbled something as I slowly started to list to starboard. Vicky asked if I was okay and I mumbled something else and then she asked if I needed a stretcher. I sat up, and realized I couldn't stay vertical for very long. I said yes, propped my head in my hands, and waited.

A gurney was brought in short order, and I managed to walk the three or four steps needed before sitting and then quickly lying down.

What I didn't realize then was that I'd be in a gurney for most of the next 48 hours.

It came to my turn for the chest X-rays, so I was wheeled in and felt good enough to stand for them. I lay back down in the gurney and was wheeled over to the room for sinus X-rays. While waiting for the technician, Vicky and I sat on the gurney and joked about the fact that the door marked "Always Leave This Door Closed" was usually opened, with the room used as a shortcut between two parallel hallways. I felt okay (well, no worse than a few hours earlier) when I sat down for the first X-ray, but in the few seconds before the next everything went wonky again and I had a quick lie-down while I caught my breath. After the second X-ray, I got back in the gurney and pretty much stayed there until I was wheeled back upstairs and climbed into another gurney and waited for my doctor to show up and look at the films.

When we had left the house that morning, my mother had mentioned that I might consider the possibility that I'd have to be admitted. I did, but I didn't really want to think about it. I figured I either had a cold or my white blood count had finally become elevated enough to be problematic. It turned out neither was the case. The X-ray technician's conclusion was mild pneumonia, and the very first thing that went through my mind was that it was pneumonia that had killed my grandfather exactly fourteen months earlier.

The hope was that I would be admitted to my old ward, but they were full to the brim so I was sent to emergency until space could be found, preferably in isolation since the blood results hadn't come in yet and there was suspicion I might be neutropenic. I ended up in the red unit (emergency has three units: red, green and blue), in room 12: as it turns out, a psychiatric room. Psychiatric as in the bed already in the room had straps on it.

By now it was approaching 5:00, and my mother elected to stay overnight with me. It turned out that my E.R. doctor was none other than an old classmate from my CEGEP days (he clearly stayed in sciences, unlike me). I ate dinner when it arrived, ran through another blood test and some more Q&As, tried unsuccessfully to read a bit of my magazine (I was too weak to hold it up and the room was too cold for my hands to remain exposed anyway), and called it a night.

Labels: Emru

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.

Labels: Emru, transfusions

I've been cagey ever since the day I got the news that I might have a matching donor, and I remained cagey (although slightly less so) when that donor was confirmed. The reason is simple; there are any number of reasons a donor could back out before they begin the procedure. It doesn't necessarily have to do with fear or callousness; it could be for medical reasons (if something turns up that appears to make the procedure unsafe for the donor, it's called off), or for pragmatic reasons (I recently read on a potential donor's blog about how, as a single mother, the extended hospital stay her donor centre required for the filgrastim injections wouldn't have worked out; fortunately, there were two other matching donors).

The fear that the donor might back out is heightened by the fact that as a black recipient, I have a much lower chance of finding another donor who can act as a backup—it's hard enough as it is to find one matching donor. And without a Plan B, what do you do when Plan A fails?

This is not a purely academic concern. You might remember back in May when Tamu wrote about Eunique Darby, a Syracuse teen who needed a bone marrow match and was fortunate enough to find one the day before the National Marrow Donor Program's annual Thanks Mom event. What I discovered a few weeks ago—and didn't report in the vain hope that good news would be around the corner—was that Eunique's donor had backed out. So rather than the feelings of relief and preparation for the transplant procedure, Eunique and her family have had to go back to square one.

I was unaware that the family had planned for a drive as part of the Juneteenth celebrations, but, as always, there are many ways to register. No matter where you are in the world, check out our list of registries for more information on registering in your area. Eunique needs a Plan B. For all I know, I might need one, too.

Labels: Emru, minority donors, New York, NMDP

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.

Labels: Emru, transfusions

This is a bit convoluted, but it's the only way to explain the last few weeks, and what's to come. Please bear with me.

Four weeks ago, my medical life was relatively simple. I only had to take three or four pills a day: one pantoprazole tablet, which helps keep my reflux in check (I developed the reflux problem during my third round of chemo), and three pills of desmopressin per day, which moderates my diabetes insipidus (i.e., it keeps me from running to the bathroom twice an hour).

A week after that, things changed a little. We'd confirmed the donor, and were going to figure out the next steps soon. However, I'd also been retaining water, and my whole body was a bit bloated. My doctor said it was probably due to the desmopression, so she recommended diuresis to solve the problem. That meant going off the desmopressin and basically peeing the excess water out.

A week after that, the water retention problem had mostly gone away, though I was experiencing some of the constant thirst I'd had back in December, and of course I was running to the bathroom a lot. Meanwhile, my doctor noticed my white blood count was elevated, and said we'd want to get that under control before we started any new chemo.

Oh yes, about that chemo. This fourth go-round would use two completely different drugs that would attack the leukemic cells differently, and hopefully put me into remission. There is, of course, no guarantee, but my feeling was that since a transplant while in remission has a much greater chance of long-term success, it was worth a shot. So I slowly started taking desmopressin again to regulate the peeing, and was prescribed Hydrea to help keep my white blood count in check (it was elevated) in preparation for the chemo. I was also prescribed my old friend, Allopurinol, which counteracts excess uric acid.

Two weeks ago, I noticed that while both my feet were still kind of swollen, the left one was more so. And it was a bit less comfortable. Still, it wasn't drastic. I just kept elevating my feet, and taking minimal desmopressin—just enough to keep my sleep from being interrupted at night.

Eventually my right foot returned almost to normal, while my left foot seemed to be expanding. Furthermore, what started as a minor tingling in my shins seemed to be becoming more problematic—standing up meant a sudden pain in near my knee that slowly moved toward my ankles, almost like it was flowing. It made it hard to walk at first, though massaging my foot and walking made it easier. Oh, and the area around my calf was tender.

During my last checkup, my doctor mentioned that the Ottawa Hospital is one of the places that performs transplants on people who aren't in remission. We thought that was wonderfully convenient, as Ottawa is just two hours away and of course we'd still be under the Canadian healthcare system. However, after she looked at my foot and I explained my pains, she ordered an ultrasound for the next day, just to make sure it wasn't deep-vein thrombosis (DVT), essentially a clot that was blocking circulation. Just as a precaution, I was injected with a blood thinner. (For some reason, they couldn't use my chest catheter. I took the shot in the stomach, which hurts a lot less than you'd think.) Oh, and since my white blood count went up by 50% (!!!) my Hydrea dose was upped by 150%.

The next day was the ultrasound. Guess what: no clot! After a bit more examination, my perplexed doctor figured it might be cellulitis (no relation to cellulite, although my foot—then extremely and painfully fat—might have suggested otherwise). So for that I was prescribed Duracif, an antibiotic.

So here's my new daily drug routine:

- 1/2 an hour before breakfast: 1 pantaprazole tablet, five Hydrea capsules, and 1 desmopressin tablet (sometimes half a tablet, depending)
- at breakfast: 1 allopurinol tablet, 2 Duracif capsules
- at dinner, 2 Duracif capsules
- before bed, 1 desmopressin tablet

What fun! At least my foot is gradually deflating, and the pain has diminished considerably.

Anyway, the day after the ultrasound we heard from the transplant specialist in Ottawa. Seems he has some concerns about my forthcoming chemo treatment; he feels that those specific drugs, should they not put me in remission, are likely to cause complications on a transplant.

This poses something of a dilemma. The best chance of a successful transplant (one that cures the leukemia and the monosomy 7, but also one that I survive) is one that is performed while I'm in remission. But of course, the very reason I need the transplant—the monosomy 7—makes it hard for me to get in remission. The chemotherapy treatment we've been considering has a slim shot at succeeding, but as I said before, I'd been thinking that I'd rather take the chance and hopefully get a shot at getting in remission. However, now, as I understand it, undergoing this chemo and not getting in remission will actually put be more at risk compared to getting a remissionless transplant—however, getting a transplant without being in remission is already considerably riskier.

Tomorrow we meet with the doctor(s) in Ottawa to get more details and discuss options and probabilities. And then I distill all this knowledge and make the most important decision I've ever had to make it my life.

I hope this explains why, when people congratulate me about finding a donor, I say that things are far from over.

Labels: Emru

A few hours ago I was sitting in a radio studio for Université de Québec à Montreal's CHOQ-FM, where I was a guest on their Les Contes à Rendre spoken-word program. My friend Yasmin Hudsmith invited me to tell a story related to my cancer, and I ended up throwing out my first two efforts (a light-hearted look at the weeks leading up to my diagnosis and a more somber reflection on mortality and the people left behind) and quickly wrote the one I ended up using on the air, a tribute to one of my fallen cancer buddies.

I'm still in the process of editing the audio for the permanent Heal Emru archives, but I thought I should point you to the recording of the original broadcast in its entirety. If you understand French (I had the only spoken English segment), the whole hour is worth a listen. You can find today's airing at http://www.choq.fm/archives-contesarendre-19069-0.html#archives; either download the MP3 by clicking the really tiny "Téléchargement" link above the mass of text, or listen online by clicking the small play icon slightly above it. I start talking about 5 minutes in.

Update: You can now listen to the clip directly from Heal Emru by clicking here.

Labels: Emru

It all started a month ago—on May 13, to be exact.

My mother and I had gone to the Maisonneuve-Rosemont hospital—where I would most likely get a transplant if I found a donor, and the place where quite a bit of research in bone marrow stem cell transplants takes place—to meet with a doctor to discuss some questions we had. Questions such as, what if I had to resort to a haplocompatible (half-matching) donor? And what if I couldn't get into remission?

We met first with one doctor, who we filled in on details about my experience so far. After a short wait, he reappeared with his colleague, and before he addressed our questions he went over some other details about my case, and almost incidentally mentioned that a potential donor had been found.

"Wait a minute," you're asking. "That far back? Why didn't you say anything?" The key is in that one word: potential. Finding a potential donor means everything has lined up in terms of HLA typing so far, but further tests need to be done to determine complete compatibility and suitability. (Just a brief explanation about compatibility: Only the first six HLA markers are recorded when someone registers to be a donor. The remaining four markers need to be verified as matches as well.)

I used to joke that so far as I'm concerned, all donors are potential until I actually have stem cells being pumped into my body. There's some truth to that, as there are any number of reasons the donor wouldn't have panned out. It could have turned out they didn't match all ten markers. Further testing could have revealed that they had some disease they didn't admit to or didn't know about. Or they simply could have changed their mind about donating. This is why we didn't want people to stop the search—because nothing was guaranteed.

On June 4, we got better news. The person turned out to be a perfect match. Tamu wrote a press release, and within hours we were deluged by congratulatory phone calls and e-mail.

In a perfect world, the next few steps would be easy: I'd get into remission and undergo the transplant. Unfortunately, we don't live in a perfect world, as I've been having trouble getting into remission in the first place. Starting next week, I'll be undergoing a fourth chemotherapy regimen, one that targets the leukemic cells in a different way than the previous three treatments. (A nice side benefit: I can do these treatments as an outpatient, so no lengthy hospital stays just yet.) If I'm lucky, this new method of attack will put me in remission and we'll start the transplant procedure—assuming, of course, the donor doesn't back out.

But what if I'm unlucky? This isn't an idle question, but a distinct possibility. The monosomy 7 that necessitates the transplant makes it harder for me to get and/or stay in remission. So this is where things get interesting. If I'm not in remission, then a transplant becomes a far riskier procedure; the stats I've heard so far put the success rate at 1 in 4, tops. Moreover, the folks at Maisonneuve-Rosemont don't do transplants on patients who aren't in remission, which would mean I'd have to travel out of province for treatment.

Finding a donor is great, but the adventure's not over yet. Not by a long shot.

Labels: Emru

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.

Labels: Emru, transfusions

No, I didn't get on a big boat. Earlier today I spent a few minutes as a guest on community radio station WMNF 88.5 FM's show Caribbean Cruise, speaking about the need for donors in general, and Afro-Caribbean donors in particular. I've posted the audio on the website here.

Labels: Emru, minority donors

Oh, snap. I just realized that with my lack of hair, I've become Charles from Diesel Sweeties.

Labels: comics, Emru

I've been meaning to write an update for the last two weeks, but I haven't really had much chance to sit still. So, with zero ado, here's the news.

We walked into my hematologist's office for my regular weekly checkup on the 30th, and she gave us the bad news: the previous week's blood smear revealed enough blast cells to make it clear that I wasn't in remission. (Or, possibly, that I was in remission for a very short while. Those cells weren't always there.)

It's vexing, because it almost feels like I've been going through chemo and away from home for nothing. That's not true, of course, but it is a bit frustrating when you find yourself pretty much back where you started, but with less hair and a few lingering mouth sores. (By the way, my hair is returning and my mouth is just fine, thanks.)

Mind you, this situation wasn't entirely a surprise. A few weeks back, while I was still in the hospital, my hematologist and I were discussing monosomy 7. It was her opinion that it was the monosomy 7 that had kept me from going into remission the first two times, and she said it was possible that it might prevent me from going into remission this time around. It appears that was the case.

The question now is, where do we go from here? Three possibilities are some other form of treatment, a bone marrow transplant before remission, or a double cord blood transplant. (Cord blood transplants come from banked umbilical cord blood, and have their own advantages and disadvantages.) These and other possibilities are being explored, and since my leukemia appears manageable, we have time to examine these other options—which is what we've been doing these past few weeks, along with stumping for more people to register as potential bone marrow donors.

So it's a good news-bad news thing. On the outside I look fine, and in truth I feel fine. But inside I'm still messed up. More news as we get it.

Labels: Emru

So it turns out that writing is therapeutic, just in a different way than I thought. Shortly after writing about my newly painful experience with the sutures, I remembered that two of the questions I would get asked every few days in hospital were "Any pain around the Broviac?" and "Any redness around the line?" (Broviac is the brand name of my catheter.) The act of writing the message made me realize that—duh!—it hurt and it was red.

So it was back to the hospital the following morning, hoping I didn't have some kind of infection. After a few pressure tests ("Does it hurt when I press here?" "No." "Does it hurt when I press here?" "No." "Does it hurt when I press—" "OW!" "Okay.") the dressing was carefully peeled back and we got a good look at the entry point. It turned out that all the sutures had worked themselves out before; what was bugging me was crusty dried skin, some of which had broken off and was irritating the skin. (This goes back to the whole thing about not being able to properly clean the area around the catheter.) The area was cleaned, and the relief was almost instant. The new dressing was applied, the redness has diminished (though not entirely), and everything's cool.

Labels: Emru

I went to the hospital today for a quick blood test ("bloods" for short). Since they let me out early and everything, they want to keep an eye on the bloods to keep an eye on my neutrophils count, white blood count, hemoglobins and platelets. When I left on Friday my neutrophils were rising slowly; my white blood count was rising nicely; my hemoglobins were okay; and my platelets were low enough that they needed to be topped off, but nothing critical.

Since it's Passover much of the hospital is a ghost town. I stopped by 7NW (my ward; that's "seven northwest") to say hi to the gang, and checked out my labs after they'd hit the computer system. The only thing I really cared about was my neutrophils count—I'd like to stop wearing masks when I go to the store, thank you—and they're only at 0.4. To frame that properly, I'd usually be sent home only once I hit 0.5, would be considered mildly neutropenic at 1.0, and non-neutropenic at 1.2.

Anyway, after I had my bloods done I had my chest catheter dressing changed, because the dressing was starting to peel already. This has happened the last few times it's been changed; I suspect it's because I'm sweating more with the warmer weather, increased physical activity and recent recurrence of the night sweats.

While that was being done, the nurse working on me removed some of the sutures from my lines. When the catheter is installed, it's pretty quick surgery, but it's still surgery. That means sutures to close the hole around the tube as best as possible until the skin heals. I didn't think about sutures when I first got the catheter in—who would?—and when the gauze was finally removed I noticed what looked like wires sticking out of my chest. That is, in fact, what they were; these sutures appear to be fine stainless steel. Parts of them were eventually cut away during regular maintenance (aside from changing the dressing, the lines also get flushed to clear away blood clots and other buildup, and the claves at the end get changed), but the rest are still inside—think of snipping the threads that hold a button in place on your shirt from only on side.

The sutures that are inside gradually work themselves out of the body. I haven't mentioned it until now because it's a painless, dull process. Every so often I'd look down and notice that the sutures had come out a little more, wrapped around the catheter tubing. When they got long and annoying, they were trimmed.

It took four months, but the first bunch of sutures finally came out in their entirety today. Before my new dressing was placed, the nurse carefully removed them from the tubing, threw them away and cleaned the tubing. I looked down and noticed other sutures were starting to work their way out.

Now, normally when I get my dressing changed it feels uncomfortable for a few hours. When the old dressing is removed the skin is cleaned with Stanhexidine (chlorhexidine gluconate, 2%) antibacterial solution, which is cold, and air-dried. The new dressing is placed, usually a different way from the old one, and the lines are arranged differently on my chest. (Each nurse has a different style, it also lets the skin breathe and, I guess, keeps the lines from settling into one shape.) So while my nerve endings get used to a new arrangement for another week, it sometimes itches or tingles until everything settles in.

Today, I noticed it was actually feeling kind of uncomfortable—and, more alarmingly, localized. When it started to get really irritating I realized the pain was right at the tube's point of entry, which is the prime spot for any kind of infection. I was starting to get antsy about that possibility when I noticed that the new sutures had actually come out further. Vicky noticed that the spot just to the side of the entry point was red (how she spotted that through the dressing from a distance, I'll never know), and when I touched it I could feel the threads through the skin.

What appears to be happening is that these sutures are working themselves out at a faster rate—I never would have noticed such a difference in a matter of hours before—and as a result it's irritating my skin. So now there's a sharp little pain in my chest every so often as they do their little mambo. I'll have to make sure they don't poke through the dressing, too. Fun.

Labels: Emru

I was talking to one of my neighbours this evening—I haven't seen her in, what, five months?—and she said that it must be nice to be home and getting back into my old routines. Which I thought was funny, because I'd already decided that today I was going to write about one of my favourite routines that's changed since my diagnosis, and will stay changed for quite some time.

I love being covered in water. Invigorating showers that stimulate the senses, languorous baths with a glass of rum and Miles Davis on the stereo, laps in the pool—except for being rained on, being submerged is one of my favourite experiences, and one I'm happy to enjoy every day. You can tune a shower to your mood, say, with a quick, warm shower to clear the cobwebs in the morning with a short burst of cold water at the end for an invigorating snap when you've got a full day ahead, or a cool stream after a long bike ride. Since I work at home I usually shower in the afternoon to re-energize myself and think through things without any distractions. (In fact, it was during just such a shower that I conceived of Frames Per Second and had my first encounter with tachycardia.)

I'm kind of fixated on showers right now because the whole experience has changed for me. One of the last "normal" showers I had was at around 5:00 a.m. on December 17, 2007. That was when I was so cold that even two quilts, a huge cup of tea, a hot water bag, and Vicky and Max's huddled bodies couldn't get me to stop shivering for a half an hour. I got into the shower, made it as hot as I could stand it, and stayed in there until I felt I was warm enough to put on three layers of clothing and get to emergency at the nearest hospital. What I didn't know was that (a) about 36 hours later I would be diagnosed with leukemia, and (b) I would have two more showers in the next few days, and then I wouldn't shower again for almost a month—and that the act of showering would be very different.

When I was admitted for treatment, one of the first things the nurses did was stick a bunch of IVs in my arm. These were to administer my chemotherapy drugs and to keep me hydrated. A few days later a doctor installed a venous chest catheter in my right pecs—a pair of tubes (or "lines") that enters my chest a few inches above my nipple, proceeds up to my clavicle, and then goes into a vein leading straight to my heart. The lines that dangle outside—they extend about ten inches—make it easy to give me medication or draw blood without poking me with a needle. The tradeoff in convenience is extra caution. I mean, there's a hole in my chest. That means I have to be extra-careful not to get it infected, and that includes not getting it wet. (It's not like the entry point is exposed; it's actually covered by a plastic dressing about four inches square. But if that gets wet, it'll peel.)

So a quick dip in the pool is right out. So is a hot bath. And showering now requires planning.

In hospital, I couldn't just shower whenever I wanted to. Because no one wants any kind of diseases transmitted, the shower (there are two in the ward I was in) has to be cleaned first, so I had to wait until housekeeping could get to it after I asked—and this was assuming I wasn't neutropenic (when they didn't want me showering even if it was clean, just in case). Then, depending on what I was being administered through the IV, I had to wait until the dose ended. Then a nurse had to disconnect me from the pump, flush any lines that were being used with saline and heperin and clamp them off. Then it was time to protect the catheter by taping a plastic blood bag to my chest with medical tape as a splash guard.

Even then, I couldn't just shower freely. Normal movements (like, say, soaping) cause the skin to shift, and the tape eventually starts to wrinkle and come loose. Besides, medical tape isn't exactly waterproof. So showering meant being careful not to get the right part of my chest wet, even when washing my hair (or, more accurately, my scalp). After the shower I'd take off the blood bag, check to make sure I didn't get the dressing wet, and then eventually I'd be reattached to the pump.

The chest catheter is still in my chest, even though I'm home. I'll still need it for my regular blood tests and forthcoming transfusions. If I'm readmitted for chemo as I was twice before, it'll still be needed. It can also be used for the bone marrow transplant. That means that for at least, oh, let's say a year, showering is more a matter of procedure than pleasure. I don't have to worry about being disconnected from a pump now, but I need help in the prep—being right-handed, and with the blood bag needing to be placed partly under my right arm, I haven't quite got the coordination to tape it on myself; I need Vicky's help to do that until I can figure something out.

Because this is such a process, it also means I shower less frequently. When I'm home I sponge myself with a hot, wet towel on alternate days. When I'm in the hospital, I can go for days without showering, and sometimes circumstances make it worse. Back during my first chemo, the migraines and other problems I was having kept me from showering for weeks. It felt good to start scrubbing the dirt off, but I've realized since then that the lack of daily showers, along with the parts I can't properly soap and scrub clean because they're too close to (or under) the dressing, mean that I won't be truly, completely clean for quite some time.

Labels: Emru