Wednesday, October 29, 2008

The Beginning Is the End Is the Beginning

The good:

I'm back! Actually, I've been home since last Friday, trying to readjust.

The bad:

The reason for my discharge and transfer back to my old hospital is because although the transplant itself was an awesome success by any measure, I haven't gone into remission.

So what does this mean? Well, there's a chance that I'll develop Graft vs. Host Disease (GvHD) which might attack the leukemic cells. But frankly there are too many ifs in that statement, and there's no guarantee it would wipe it all out, as far as I know.

The ugly:

I asked one of my hematologists in Ottawa how much time he figured I had. He said less than a year. I asked the same question of my hematologist today, and she said weeks, maybe months.

Those are the facts about the leukemia. I have a lot more to write, but I started today about twelve hours ago by collapsing and needing to be be brought in to the hospital by ambulance. I'm quite tired. I have just enough energy to ask a favour. Could thouse of you who are on mailing lists I'm on (or used to be on) please post this? I don't have the energy to go to PWAC-L, the various SIGGRAPH lists, CE-L, and so on. You'd really be helping me out a lot. Thanks.

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Thursday, October 23, 2008

It's Been a Hard Day's Fortnight

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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Sunday, October 19, 2008

Why Does My Heart Feel So Bad, Parts 2 and 3 of 3

Finally, the belated sequels.

Part 2:

I can't even stay out of trouble 24 hours. I was getting my early-morning vitals (about 4 a.m.) taken and chatting with the nurse when I felt it starting to happen again.

"Kim. Check my heart rate again, please?"

And in a few minutes, the RACE team was back in here, I had a bunch of extra wires connected to me, and I was yet again explaining my cardiac history.

Seeing that the previous doctor had gotten my heart rate down using just beta and alpha blockers, this doctor opted to try that as a strategy rather than put me through the adenosine.

I appreciated the effort, but it wasn't to be. The first dose was the most effective, dropping my pulse by about 20. Then it was just diminishing returns: he used up the rest of his store bringing it down another 20.

So, hello, adenosine. I asked for my mom to be in the room with me and gripped her hand as the familiar but unwelcome crushing sensation returned. (It wasn't as intense this time, but it did last longer than earlier.) Finally, my heart rate returned to normal, and consequently everything else around here did too.

Part 3:

After I wrote Part 1 but before I could finish Part 2 (again, within 24 hours of Part 2; this time Vicky was with me instead of my mom), I had a third incident. It was almost boring. I was connected to two pulse/oxygen saturation monitors and two blood pressure machines again, as well as an EKG and yadda yadda. As RACE members filed in I said hi to the one person who had been present each time (man, I don't want her hours, I thought).

Before Vicky moved her chair out of the way, she surreptitiously handed me the PSP and whispered, "Put music on." It was still on "The Healing Place," so I pressed Play and put it to the side of my head.

Then the doctor showed up and he read through my chart. Based on the previous incident he was all set to go with adenosine again, and I anxiously pointed out that adenosine only worked the second time. As we talked about the recent incidents (and, of course, my previous history again) someone piped up: my heart rate had gone down on its own. The doc hit me with a few beta blockers to bring things down to an even more comfortable level, and after some observation they left.

I joked that it was David Sylvian that did the trick, but after a few moments' thought I realized this is the way these incidents usually happen to me.

Postscript: Over the next few days I was visited several times by cardiology and RACE, and both talked about temporary dietary restrictions, of sorts: no caffeine, and no excitement -- meaning, nothing that would get my heart racing, which might lead to tachycardia.

The first is no big deal (I've had the same restriction since March, when my reflux started), but the other two--? No Battlestar Galactica finale. No Macross Frontier. No Gatchaman, which was just getting to the good part. And don't even get me started on music restrictions. Sigh.

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Friday, October 03, 2008

Why Does My Heart Feel So Bad, Part 1 of 2

Woke up yesterday morning with no real plans except relaxing (the day before was something of an ordeal) and working with my physiotherapist. For a while, that was pretty much the case; I spoke with various visiting members of the team (showing off my ever-leaner right leg and complaining about my new chest pains), watched Gatchaman episodes, burned a CD to get through the boredom of an upcoming MRI, things like that.

Around noon things got a little too exciting. Several nurses had been trying to clear out a blockage in my feeding tube, with the fear that the visible blockage hid stuff farther up that might be far harder to remove, possibly necessitating the tube's removal and reinsertion. I felt a familiar sensation in my chest, on top of the various pains that made it hard to speak.

"Katie? Could you... check... my heart rate?"

Many of the nurses here check pulses the old-fashioned way, by holding your wrist. When she realized how fast my pulse was going, she tried to use one of the machines—only it couldn't read pulses that fast, either. Eventually they were able to get a reading of about 220, and I found myself explaining my history of tachycardia again.

By now a good deal of time had passed, and my heart wasn't slowing down. Katie told me they were going to call the RACE (Rapid Assessment of Critical Events) team.

Soon, my transplant physician showed up, and gave me a once-over physical exam, and asked a few more questions. Just then, my not terribly large room just filled with people and equipment. An EKG, a heart monitor and a blood pressure machine were hooked up to me to provide continuous testing before, during and after treatment. I was a complete mess of wires and tubes.

Once everything was ready, I was told what the present course of treatment was. They were going to inject me with adenosine and flush the line over about six seconds, which would get the complete dose into me in moments. What it would do was, essentially, stop my heart for a few seconds; when it restarted, the part of my cardiovascular system that regulates things would restart it at its regular rate.

"Until your heart restarts, you'll feel pretty awful," said Tom, the RACE doctor who would be doing this to me with a smile. At the same moment, I was asking, "What will this feel like?"

"There'll be a crushing sensation on your chest for about 3-5 seconds. If it hasn't restarted by then, you'll pass out until it does. It usually isn't more than 10 seconds."

What could I say? I had long passed the point where this was a danger to me. A distal (lower) port was used on one of the lines, and Tom went to town. Almost instantly I had trouble breathing, as invisible rhinos sat on my chest. I knew I wouldn't last much longer, when suddenly I felt my heart beating again (oddly, I'd never felt it not beating—but apparently it had).

Everyone's happiness was short-lived when someone noticed the truth: my heart rate had returned at the same rate as before!

Tom went off to confer with some other team members, leaving those of us in the room to talk amongst ourselves, organize things a bit, and make small talk. While doing those things I also listened to/felt the strange polyrhythm of the various devices attached to me.

Tom came back and gave me the new plan of action, which was remarkably like the old plan of action—only preceded by beta blockers and possibly alpha blockers to reduce my heart rate before hitting me with the terrible stuff.

So I braced myself, and we started the process. I got the first injection of beta blockers, and there was a wait as everyone who could see the monitor (i.e. everyone except me) looked at it intently and compared it to whatever they needed to compare it to. Eventually I noticed that no one was mentioning the terrible stuff anymore. Tom turned to me and said, "Quick, think of the most relaxing thing ever!"

I turned to Katie and said, "Quick, pass me my PSP!", fired up David Sylvian's "The Healing Place" and closed my eyes. A few moments later, Tom declared, "We did it!" They'd dropped my heart rate to 108 using only beta and alpha blockers.

There was a lot of activity as people milled about, exchanging information and keeping an eye on things. Gradually people started to retreat, disconnecting me from this or that gadget.

And in a wink of an eye, it was over. Jocelyne returned, and as Katie watched she got the feeding tube blockage cleared. Problems solved (and thoroughly tired), I went to sleep.

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Wednesday, October 01, 2008

And Now a Word from Our Monster

Okay, so after yesterday i realized it would be near-impossible to chronicle my adventures linearly. So I spent a little time figuring out how I would talk about everything that's gone on since Day 0.

That plan is still a go, but first an important bit of information, which we learned of this morning.



Thank you.

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Tuesday, September 30, 2008

So, What's Rebirth Feel Like? Meh.

The Day, on September 16 as planned. I wore a brand-new Coyote/Joe Phat t-shirt (sneakily unearthed & delivered by Tamu & Vicky). In a textbook display of perfect timing, Vicky walked into the room just moments after the IV pump started transfusing the stem cells. It was bright and sunny, a perfect day for rebirth.

And, as (repeatedly) predicted, any excitement was purely conceptual. Unlike other clear or solid fluids I've had go through my IV pumps, stem cells and the fluid they're suspended look like textured particles. As a result, you can see the stem cells' progress as they flow through the tubes. After a few minutes of marvelling at that, though, Vicky and I got bored and found something else to do. In my case, that meant sleep—the Benadryl I'd been given earlier caught up with me and gave me a few minutes to get comfortable before gently knocking me out.

The next day started pretty much the same as always, and during my usual morning visitations I was informed that while the 16th was Day 0, the procedure had taken place late enough in the day that for the purposes of medication schedules, the 17th was also Day 0. Of course, I thought, my new birthday would start on one day and end on the next.

Anyway, this is about the end of when things were dull and unexciting. More on the subsequent 13 days later.

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Tuesday, September 23, 2008

Blood in Ottawa

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

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

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Friday, September 12, 2008

Part of the Process

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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Thursday, September 11, 2008

Busulfan Makes My Liver Quiver

You know how some days you've got a phrase or a song stuck in your head, no matter what? Despite tons of Raymond Scott, Red Hot Chili Peppers and, right now, some kickin' bhangra, I have been unable to get this earworm out of my brain: Your hat is stupid!" "My hat is AWESOME!"

Ahem. So, yesterday was the last fludarabine infusion; today, we switched to the more hardcore (which I mistyped as "hardcare," which still works) busulfan. In comparison to the fludarabine's 30-minute infusion, the busulfan takes three hours. Also, it's potentially more damaging to my liver and kidneys, which means I have to take a mess of extra pills on top of my gout-preventing allopurinol to help prevent any damage.

I also have to take in 8 cups of water a day, to help me just pee the damn stuff out. It's all reminiscent of my cyclophoshamide episode, but at least I'm not running to the bathroom three times in ten minutes—my own intake of water, juice, milk and Jell-O is supplemented by the 1.25 liters or so (a little over 5.5 of the 8 cups) of salinated water I get through my IV throughout the day. Oh, I also have to take two Zofran anti-nausea tablets (instead of the fludarabine's one.)

Yesterday I was wiped out from a painkiller I'd taken earlier in the day for my leg, so I'll fill you in now on what's happened since Sunday.

I've met a few more members of the team here. There is, of course, a transplant doctor (not the same hematologist I met with before I was admitted, though he is part of the team) who I've seen just about daily since Tuesday. There's also a social worker here to see to my mental health. (Stop snickering, you people in the back row! And the ones in the front, left and right! And in the balcony!) The pharmacist drops by every day to see how I'm doing.

Yesterday I had my first visit from the dietitian; after an extensive talk about the foods I need in my diet, the possibility of a feeding tube, and foods I'll need to eat more of or avoid when I'm out, we went over my menu choices, including other options on a blue-green sheet of paper she pulled out of nowhere, which includes Jell-O with every meal and tasty high-protein shakes they whip up here. (As a side note, I ate my spare orange Jell-O as I was writing that last sentence. I am telling you, this mini-fridge is awesome.)

The last new person I met was the physiotherapist, who is going to give me exercises to work my arms and legs daily so I at least don't lose any more muscle tone. Until she did her tests I didn't realize how much power I'd lost in my shoulders and biceps. They're like, well, Jell-O. My triceps and wrists are great, but jeez! I'm looking forward to her return on Monday.

The food here is still roughly tied with the stuff I was eating before. The egg rolls I had at lunch were so-so, as was the mushroom cream soup. But man, I demolished the plate of beef & mac, scalloped potatoes and wax beans at dinner, leaving behind a tiny piece of potato I didn't want to bother chasing before I went to town on the carrot and pineapple cake. After those and everything else I didn't even have room for the two digestive cookies I'd saved after lunch.

Prepped for a shower and showed Katie, today's day nurse, how we do it back home. We skipped the Saran-Wrap and I asked her for a blood sample bag, tucked the lines into the exterior pouch (exterior to the bag, that is—it's placed directly on my chest) and taped the whole thing up. After she left I turned on the Red Hot Chili Peppers, left the bathroom door open so I could hear them, and got myself clean. (Leaving the door open is also incentive to dry off pretty quickly and thoroughly.)

Incidentally, while I like all the nurses here so far, Katie is my favourite nurse for the simple reason that she always calls me "kiddo." It's like being in the comics I read and the movies I watched growing up.

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Monday, September 08, 2008

One Flu Over the Cuckoo's Nest

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

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

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

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

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

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

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

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

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

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

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Sunday, September 07, 2008

And Now You're Up to Date

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

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

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Wednesday, September 03, 2008

Black and White, Day Zero

What a day.

After getting Max off to school, Vicky and I dolled ourselves up and headed straight out to Place des Arts for the Cancer Connections Montreal launch I mentioned yesterday. Although we left late (fresh pain in my leg slowed me down considerably) and had to get through heavy traffic, we somehow made it on time. I could tell the whole story here, but pictures, appropriately enough, do it better. I've put a handful of photos from the morning up on Flickr.

You can see the entire photo collection online, but I recommend going to see them in person. It's a free outdoor venue, and seeing them all arranged on the esplanade can pack quite an emotional wallop—but it's also an amazing testament to the diversity of cancer experiences, and something about seeing these under the open sky makes the overall experience more positive than anything else. The exhibit will be in Montreal until September 28.

After that we had to head to the hospital for a blood test, a dressing change for my catheter, my checkup and a CT scan to hopefully find the cause of the continuing congestion that has been affecting my hearing for over a week. Only the CT scan had a fixed time and everything else was kind of a crapshoot, but the stars aligned and everything mostly fell into place. (Except for the extended time I had to wait for the radiology folks to clear through their CT scan backlog. When you're leukemic it's already hard to stay warm; when your blood pressure is low it's even harder. Even under several blankets, I was freezing for quite some time.)

But the truly exciting news came when we were on the road, between exhibition and hospital. Checking the answering machine at home, we discovered we'd received the call we'd been waiting for from the Ottawa Hospital. My Day Zero—the day of the transplant, my new birthday—is September 15. However, I will actually be admitted to start my transplant prep this Saturday.

So much to do, and so little time to do it. But the timing couldn't be better, given my circumstances. My leg is getting worse—I'll actually need a painkiller tonight—but otherwise I've been slowly regaining my strength. Starting this while I'm on the upswing is, as they say, just what the doctor ordered.

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Tuesday, September 02, 2008

The Hero Re-Discovered

This image is from a comic book series called Mage, and while it may not seem to have anything to do with my leukemia right now, well... keep reading.

Mage was an independent series created by Matt Wagner in the mid-1980s. I was an easy mark for it, because I've always loved stories that map ancient legends and figures to the modern day. In the 1990s follow-up series Mage Vol. 2: The Hero Defined, the cast expanded, including the character you see on the far left: Joe Phat, the modern-day incarnation of the trickster Coyote figure.

Anything who knows anything about independent comics of the era knows that Joe Phat was a black, dreadlocked version of his pal and fellow comics artist Joe Matt. But it took about two seconds to realize that despite Wagner's intentions, Joe Phat was, well, me. Absent the dreads, Coyote wore the same glasses I did. We had the same physical build. He shared an apartment in Montreal with his two cohorts, and his room looked an awful lot like mine. He was a talk-too-much, always-grinning trickster. And his power was to run at super-speed. He ran like I loved to run.

It's hard for a middle-class black kid to find a comics character they really relate to, but Coyote and I resonated on exactly the same frequency. There's even a scene in The Hero Defined which spoke directly to a very painful part of my life at the time I was reading it.

When a Coyote t-shirt became available, I couldn't afford it. I bought it anyway. When I wore it I felt unbeatable, like I could get out of any situation and come out on top, just using wits and speed. Knowing that I'd wear the thing out in no time at all if I wasn't careful, I tried to only wear it on special occasions, and I'm happy to say it survived pretty well even into the first few years of my son's life. (It also outlasted my ability to run. I damaged my knee in 2000, and I can't run flat-out anymore. I miss that a lot.) Eventually, though, the shirt gave up the ghost, and my attempts to replace it over the years have been futile.

Now we come more or less to the present.

Last week I was resting at home, enjoying my renewed mobility even if I was still a bit under the weather. My mom dropped by with a package from Tamu—we're always shuttling stuff back and forth—and handed me something I couldn't open until they got the camera so they could photograph my reaction. Of course, that set off alarm bells. I removed the item from the plastic bag. I lifted the cover. And I wasn't at all prepared for what I saw.

Sandwiched between two boards was an original drawing by Matt Wagner of me running, dressed as Coyote. (Click the image for a higher-resolution version.)

Four photos were taken of my reaction. In the first two I look surprised and happy, but you can't see what I'm looking at. The third photo, the one you see here, is is the transitional one. It was my last moment of composure before I started crying uncontrollably. Part of it was of course the drawing itself, and the thoughtful and unexpected gift. But what really started the waterworks was a detail that no one else could possibly have known about: Three weeks earlier, when I had the vision of racing against the leukemia to make the bone marrow transplant date, I was wearing exactly the clothes that Matt had drawn me in. I was Coyote, relying on pure speed (and maybe some last-second trickery) to beat the disease to the finish line.

I almost managed to pull myself together when my subconscious pointed out something I'd missed. Matt's drawing had one essential detail that I hadn't even thought of in my original vision: I was smiling as I was running.

As soon as that clicked, I completely lost it.


I've been meaning to write this post since August 27, the day after I got the picture. As usual, it was mostly composed in my head already; it was just a matter of sitting in front of a keyboard. But it was right around then that my blood pressure dropped, making me too weak to do much of anything. (In fact, I discovered that sitting up straight in a chair was tiring.) I've been getting lots of food and rest, but it's taken me about three days to tap this out, bit by bit. I fear that I've lost some of the feeling I was trying to get across, except for the fact that I can sometimes bawl like a baby.

In any case, profound thanks are due. To Tamu, for coming up with such a great idea for a present; to Matt Wagner, for truly listening to her while discussing her request, resulting in a letter-sized coloured-pencil drawing that I will always cherish; and to Karine Charlebois and Marc Mackay, who shepherded the drawing from Comic-Con in San Diego to here with such care. It's because of people like you, from relatives to friends to people I've never met, that I keep running.

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Monday, August 25, 2008

Adrian "Baldy" Sudbury Dies at 27

Got back from my weekly checkup/followup from last week's fat & painful legs incident, and everyone was pleased to see that the treatments (and the resulting easier ability to move around) have greatly improved things. My white blood count, which has been out of control, even dropped down to more normal levels, probably as a result of the treatment (which means my muscles ache a lot less).

Still, it was something of a whirlwind this morning. We were stunned to arrive home before noon. (Everything, including traffic, aligned, so we had almost zero wait time for everything. This is unheard of.) So I'm a bit tired, and need to lie down before this afternoon's planned whirlwind, which you'll be hearing about later.

But when I casually glanced at previously missed news item, I couldn't let it pass. The Guardian reported on Wednesday that Adrian "Baldy" Sudbury died the night before. We've written on Adrian a few times before in passing (mostly in relation to the bone marrow donor clinics centred around him in one way or another), and his excellent Baldy's Blog has always been a delight to read, though I've never had the time to read it in the depth that I'd like.

Many people don't hear about bone marrow transplants until they or someone they know needs one. Many people, when they find out about them, try to inform as many people as possible. The Internet and its many communication services make this easier even for people without a communications background, and those of us who do also jump in if we feel we need to.

Because of our different backgrounds, different ages, and different situations, we jump into these things differently, but there's an underlying sentiment I noticed early on that I articulated a few times when talking to the press or other activists: we're all in this together. When we make these efforts to help ourselves, our friends, or our families—in short, no matter how personal the motivation—we help each other as well as future people who will need recipients. It's selfish and selfless at the same time, and many of us quickly realize that.

Even among all of our stories, Adrian's was remarkable. Here was someone who, after a time, consciously decided to stop treatment—in effect, removing the possiblity of any selfish motivation—and threw himself even harder into his activism with the time he had left. And he made excellent use of his time, meeting with PM Gordon Brown and speaking out about proper awareness and understanding of the bone marrow registering and donation procedures in schools, so that people would be better informed when they were old enough to make the choice to register.

And in every picture of him, in every word he wrote, he was smiling. Adrian's done a lot, and I think that even now that he's gone, he'll continue to do a lot. I've never met him, I've never spoken to him, I've never e-mailed him. I miss him terribly.

[Cross-posted from Heal Emru.]

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Friday, August 22, 2008

King of Pain

Disclaimer: A lot of this message was written as painkillers were kicking in. I blame grammatical errors and any lack of clarity on them.

So, went down to the Ottawa Hospital yesterday. Did a bunch of blood tests (including HLA typing) to get my info into their system, and talked about the transplant itself. There was little I didn't know already, just from reading and talking (more on that in a bit). Things are still looking good with the donor, maybe not as much for me (infections and all), but I continue to work on getting into fighting shape. The transplant itself will most likely be the week of September 15 (the week of the Ottawa International Animation Festival—no irony there), and eight days earlier I'll have started my ultra-intense chemo to start the process. There will be more regular contact with the Ottawa folks in the coming weeks, including a sit-down in which we'll go over every aspect of the procedure and my containment, as I like to call it, in fine detail. Jokes were made about the hospital food. I grabbed a cream of chicken soup on the way out and pronounced it quite tasty.

I had meant to mention earlier this week that Jason, one of my AML buddies who found three compatible donors in April, had had his transplant on July 1, and we'd been playing telephone tag since July 29. We finally connected on Sunday, and we had a great time catching up, including a detailed blow-by-blow of when he felt like crap, how he felt like crap, and how long he felt like crap. But he was exuberant as ever, and it was great to finally connect with him. Unfortunately I had to pass on the news that our mutual AML buddy Terry had died.

Anyway, the reason I hadn't mentioned it is that lately I've been focusing on organizing certain things around the bedroom and office to make them easier to keep clean for my return post-transplant. And I've still been just tired enough that I'm napping just about every day. But since Tuesday there was a brand-new reason.

Back in June I reported on how my feet and shins had swollen to epic proportions, and how some diuresis (i.e., peeing it out) would do the job of dispelling the extra water I'd been retaining. Worked fine for my right, but not for my left, testing, not a clot, cellultitis, antibitotics, pain went away, keep feet elevated if not active, etc., etc., etc. Case closed over time.

Not so fast. On Monday morning I woke up and my right leg was almost but not quite as bad as my left; I could still close my sandal clasp easily, but it wasn't quite as roomy. I had a regular hospital checkup that day (not with my regular hematologist, as she's out of town), but the doctor said it was a normal leukemia thing. "Normal" as it "it's one of those things that can happen, though it doesn't happen to everyone."

Tuesday morning was an altogether different matter: the pain I had experienced in my left leg when I got up in the morning was now being experienced in my right—but the pain was far more agonizing and lasting longer. If I kept circulation flowing by moving my leg (or having a good massage) things would improve, but it was still a matter of constant pain management so long as I was awake. Vicky and I bore this out by walking around the block after breakfast on Tuesday. I used her umbrella as a walking stick, but by the time we'd halfway finished our circuit, I didn't need it as much. When we got home I asked my dad to bring over some of his collection of walking sticks so I could find one that would let me get support if I needed it while standing up straight.

The walking stick that worked best for me had actually been a present to my father when we were in Kenya in 1986. It's carved from wood, and quite striking with its design of an elephant supporting the ring I hold with my hand(s), which are in turn supported by two roaring lion's heads. Everyone stops to ask about it when they notice it. However, once we got to the Ottawa Hospital we noticed right away that it's not very good on hospital floors—it just slides too much. Much to our chagrin, my dad had a rubber tip fixed to the bottom before we left. It works better, but it doesn't look right.

On the way home, I called my hospital and told the doctor about the pain. He asked if I'd taken anything for it. I said yes, 30 mg of codeine, which took the edge off but also had me sleeping through most of the car ride to Ottawa. He said, That's not enough. I said, Tell me about it. He told me to up it to 60mg when I got home, then call him the next day to let him know how well it worked, and we'd take it from there.

When I got home I was thoroughly distracted by other things, and remembered a few hours later to take the upped dose with my evening meds. While I was catching up on e-mail a bit later, I noticed my legs were bothering me less. Shortly after, I fell asleep at the keyboard. Twice. It was around 7:30 when I finally finished what I was doing, went upstairs, and went to sleep for about five hours. And that's why I hate painkillers; the really good ones knock you out, so you can't actually move around and do stuff pain-free.

I had to get up in the middle of the night a few times to go to the bathroom as usual, and as usual (since Tuesday) the shift from supine to standing was not an enjoyable one. However, I did it myself, dealing with the pain mostly through breathing and muttering sarcastic comments under my breath. This morning, though, it was pure and utter agony. Vicky had gone to drop off Max to start his day of mad fun, and I discovered it was 33 steps from the bed to the toilet. I discovered this because I had to fight for each step, arguing and cursing the entire way. It's still true that if I keep walking things improve, but the very first hour or so of the day is the worst—and this time I was starting to black out just from having to deal with so much at the outset.

I eventually made my way back to bed, and while the pain didn't stop outright, lying down helped; I didn't need to close my eyes. When Vicky got home and I explained everything she had the brilliant idea of using this wooden massager on my legs, even on the tender spots. It hurt a little at times, but it was so worth it overall.

Called the hospital, and the doctor gave me a choice: he could prescribe a stronger painkiller, or I could come in in the next two hours—a bit of a challenge with traffic, finishing breakfast, and just moving slower.

Well, I did get there just in time, and he looked very closely at both legs while listening very closely to my history and checking out my file, including my most recent blood test results. His feeling was that, yes, this was the leukemia, and it was getting out of control. He prescribed two painkillers that I would get immediately as a subcutaneous injection and intravenously, with the rest of the doses to be taken at home orally. His third prescription was for yet another relatively mild form of chemotherapy; something that could be administered quickly—two large syringes of a blue, clear fluid that went straight into my catheter in about five minutes, from the nurse gloving up to disposing of the syringes—with minimal side effects, and the option of stopping treatment if I don't need anymore come Monday. That should hopefully attack the source, and like the Hydrea keep things under control until transplant time rolls around.

The painkillers, of course, made me a bit loopy. This time it was dizziness and drowsiness, though not excessive amounts of either. When I had my second dose later (via a tablet), I slept pretty well (I got home by the time I needed to), but the doorbell woke me up and my mind was a badly confused, slightly scared jumble for a while before things calmed down. However, even before the second dose we were easily able to determine that the painkillers—one a daily dose of a steroid, the other just to take as needed—did a good enough job of diminishing the pain. The shins and feet still hurt, but not enough to take so much out of me physically and mentally. That's good enough for me.

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Friday, August 15, 2008

Again, Blood and Ottawa

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

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

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

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

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

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

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

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Monday, August 04, 2008

One Lump or Two?

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.

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Sunday, August 03, 2008

So Many Infections, So Little Time, Part 2

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.

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Thursday, July 03, 2008

Always Have a Plan B

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.

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Sunday, June 29, 2008

Blood and Ottawa

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

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

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

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

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

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

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Sunday, June 22, 2008

Mo' Meds, Mo' Problems

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.

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Thursday, June 19, 2008

CHOQ to the system

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; 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.

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Sunday, June 15, 2008

The Match Game

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.

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