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 12, 2008

Before I write about the future, I need to correct the past. Not ten minutes after I'd written yesterday's post, my night nurse came in and hung a new 1L bag of saline on the stand. That meant that over a 24-hour period, I got just about 2.25 L of water (and 0.9% saline)—essentially, those 8 cups of water I need daily to deal with the busulfan. I thought about it and realized the binder (which I really must finish) is written for the majority of bone marrow transplant patients here, who are treated as outpatients. So that was to make sure they drank 8 cups of water while they were home. Inpatient that I am, it just gets put out in bags for me. Still, nothing wrong with a beverage now and then.

Now, on to the future.

In talking to friends and relatives, I've discovered there's a lot of misunderstanding about the process of what I'm going through. So, in an effort to keep from repeating myself, here's the broad overview.

From Sunday to Wednesday, I had four daily fludarabine treatments. It was pretty mild, as promised. I started the Busulfan as promised, and as promised it was a bit harder. Still easily tolerated—no nausea—but still almost guaranteed diarrhea (check) and a menace to liver and kidneys, as I mentioned yesterday. I had to take a bunch of extra drugs for that yesterday, and a few less extra drugs today.

The Busulfan (which I keep wanting to type with a 'ph') ends on Sunday, and then we give my body a break. It's important to remember that no matter how well I physically respond to chemo, it's still the same horror inside I described a while back; every chemo, including the two I did as an outpatient, weakens my body to some degree. This combo of chemo not only wipes out all my marrow, it wipes out any quickly-multiplying cells. That includes not only cancer cells, but other, perfectly normal and healthy cells that always multiply quickly.

Anyway, on the 14th post-Busulfan, I get ATG, an anti–T-cell medication. Yes, T-cells are designed to detect incoming viruses and other foreign intruders, but in this case we want to switch that ability off to let the new marrow to do its thing, hopefullly warding off graft vs. host disease (GvHD). Potential side effects from ATG include flu-like symptoms and allergic reactions. Joy.

On the 15th, I get started on my old pals fluconazole (anti-fungal) and acyclovir (anti-viral).

On the 16th, 48 hours after the Busulfan dose—the early afternoon—I'll be getting my transplant of stem cells.

First, an explanation for those who haven't been around the whole time. We talk about bone marrow, but what transplant recipients like me really need are healthy stem cells. Bone marrow contains plenty of the stem cells we need, but times have changed. In 70% of all extraction cases, we get the required stem cells through a process called PBSC (peripheral blood stem cell) extraction. This process is similar to donating blood, except the donor gets change: the blood is extracted through a needle, which takes the blood to an apheresis machine, which separates the stem cells from the rest of the blood. Anything that isn't needed for the extraction is returned to the donor. As for those remaining extractions, yes, those are actual bone marrow—a spongy red tissue.

Either way, my transplant works the same. Not through any kind of operation, but by pumping the stem cells/marrow through my chest catheter, the same way as I get my blood transfusions, for example. As I understand it marrow transplants take three hours or so (don't quote me on that); my transplant, which is of stem cells, is 60-80 minutes (two units, 30-40 minutes per unit).

"But wait," you might ask. "I have been following your posts, and you've mentioned that your catheter is a central venous catheter. That is, it goes into your heart to get pumped into the bloodstream. So how do the stem cells get to inside your bones, which is where they'll generate the new marrow?" Ah, that is the freaky part, the part that medical professionals marvel over but don't question, because hey, it works. The stem cells know where to go and they just get themselves there.

A moment's pause for the awesomeness of creation, please.

I will have photos taken of me with the bags, and maybe one or two of me standing next to the pump as the stuff is going into me. Other than that, I plan to curl up with a book or movie or something to pass the time. Aside from getting a new birthday (my fist birthday was made up of two multiples; my second is made up of two squares! Awesome!) it's really quite boring.

Around now I'll be put on tarolimus, an anti-rejection drug and another means of anticipating GvHD. If there is no GvHD, I'll only need it for 4–6 weeks. If there is GvHD, then I'll need to take it for at least 3 months before tapering it off.

A couple of days after Day Zero is when the excitement starts. As before, my counts (for white blood cells, hemoglobins, neutrophils, platelets, and other blood components) will start to drop, which is when I'll start to get tired (low hemoglobins) and particularly vulnerable to bugs without and within (neutrophils and white blood cells make up the immune system's front line).

This is when the doctors start really paying attention to me. At the first sign of a fever, for intstance—and I will get one—they swoop in to find out what's causing it, and if they can't do that right away they pump me up with a variety of antibiotics until they can. (Earlier this year, when I had that horrible fever that had me clutching ice bags to my body, a doctor casually informed me a few days later that what got me was a strain of e. coli that was resistant to the drug I was being administered. They switched the drug, and the e. coli didn't have a chance.)

The docs will also be scoping me daily for the first hint of mucositis, and monitoring its progress. The fear there is that the sores will go far enough down my throat that I will be physically unable to eat much—and we've been working on getting more protein and calories in me to get my weight and muscle mass back up. If it comes to it—and this happens in many cases, I'm told, no matter how much people eat to avoid it—it's time for a feeding tube to be inserted into my nose and down to my stomach. (The width of the tube is somewhere between the size of my MacBook power cable and that of the Ethernet cable. And apparently I won't feel most of it... but I figure I'll feel enough!) The advantages to a feeding tube are that it can be clamped off when not in use, so I can walk around. Also, I'm guaranteed to get the nutrition I need (and keep my stomach exercised) no matter how iffy the food is tastewise. But still.

Two to three weeks after Day Zero is the show we're all waiting for. That's when the new marrow should engraft with my body. Speaking to the transplant doctor, he said he's never seen engraftment not happen, except for one case. They boosted the patient's body with fligrastim (the same stuff they use to boost donors' stem cell levels if they're donating via PBSC), and everything went fine after.

Assuming everything goes well, I'll be out of here in early to mid-October. Of course, things aren't over yet. The first 100 days are crucial. I'll be spending much of my time in self-imposed exile at home, both working to get back into shape and resting. I'll have weekly checkups, but in Ottawa. I'll still have to be careful about what I eat, etc., as the immune system will still be rebuilding itself. There are a bunch of other issues as well, such as lichenoid texture (leather-like skin) which can happen a year after Day Zero. It's treatable and it does go away, but it's symbolic: I don't really and truly count my lucky stars until a year after the transplant, when all (most?) of its side effects go away, and my bone marrow biospsy comes back clear.

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August 19, 2008

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

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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 20, 2008

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.

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July 16, 2008

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.

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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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