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.

Labels: blood pressure, chest, Emru, feeding tube, heart, tachycardia

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.

Ahem.

COMPLETE ENGRAFTMENT!

Thank you.

Labels: Emru

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.

Labels: Emru

OneMatch, Canada's stem cell registry, is hosting an on-site swabbing event on Sunday. At least 200 people need to register for this to be considered a success. There will be on-site staff to answer questions and educate the public.

Date:	Sunday, September 28, 2008
Time:	11:00am - 3:00pm
Location:	The Tagore Centre
Street:	140 Millwick Drive
City/Town:	Toronto, ON

Here are my suggestions to help make this event a success:

• Already on the registry? Tell people you registered!
• Too old to register or otherwise ineligible? Get more informed on the issue and spread the word!
• Thinking of registering? Get the proper documentation to dispel myths and talk to your friends and family. Staff from OneMatch will be on-site at Sunday's event. Ask lots of questions and get the facts! If you want to swab right away, you'll be in the right place!
• Are you a photographer, videographer or sketch artist? Record this event and then show people your work.

View Larger Map

What does it all mean?

I've gone on the record saying that I am in disbelief that Canada does not run bone marrow drives. If you have ever seen a drive recently in Canada, it is a US organization, such as Gift of Life, that runs drives, and anyone who gets swabbed is placed on the US registry. Further complicating issues, Quebec has a different method of sample collection, so many people figure they will wait until they can swab, and that opportunity may not occur again in a timely fashion, as it is uncertain when an out-of-country drive will next be organized in a given city.

This event could be a critical turning point in reaching more Canadians on this issue. If you live in Toronto, tell your friends, and make sure to encourage them to tell others about it.

Join the Facebook event and invite friends
Appeal for South Asian Donors

Labels: bone marrow drives, Canada, minority donors

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.

Labels: Emru, transfusions

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

Labels: Emru, patient stories, transfusions

Emru received a transfusion of the donor's stem cells yesterday afternoon. His wife was at his side. My parents and I spoke to him on the telelphone as it it was happening, because we were having a problem getting Skype to work as the nearby coffee shop's wi-fi was on the fritz.

Please consider registering as a stem cell donor and think about donating blood. Not enough people do either. Emru is just one person. He is very special to us - but there are a lot of other special people out there. They are someone's best friend, their brother, sister, or cousin, child, and maybe a mother or father.

Another way to follow how Emru is doing and to raise awareness about registration is to check out the Heal Emru page on Facebook. You can also follow tweets on Twitter.

Labels: Emru

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.

Labels: Emru

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.

Labels: Emru

The Hendrick Marrow Program, the National Marrow Donor Program (NMDP), the NASCAR Foundation and the Jimmie Johnson Foundation have teamed up for the annual NASCAR Foundation Blood and Marrow Drive—providing you with an opportunity to register for free as a potential bone marrow donor.

On September 11, you can visit one of 30 participating race tracks to donate blood and register as a bone marrow donor; some tracks also feature other incentives, like food, t-shirts, and even the opportunity to drive around the track in your own car. (Note that four tracks are holding their events on September 12, September 13, September 21 and December 2.)

If you can't get out to a race track (or, like me, you're just not a racing fan) you can still register as a donor for free online until September 22. Either way, it's time to start your engines.

Labels: bone marrow drives, free registration, NASCAR, NMDP, US

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.

Labels: Emru, transfusions

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.

Labels: Emru, transfusions

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.

Labels: Emru, events

Last week I hinted at a "whirlwind" Vicky and I were expecting one afternoon. It's kind of last-minute, but here's the full explanation.

A few weeks ago Vicky was poking around the Canadian Cancer Society website when she discovered a touring photo exhibit featuring cancer patients. It was called Cancer Connections, and they were looking for submissions for the Montreal leg of the tour. We got the negatives from Vicky's various photos of me, and brought them over to our good friend Marc Elias. He scanned our two favourite photos at the requested resolution and worked his Photoshop magic to get just the right contrast and detail. In the end, one of the photos—one many of you will recognize—was accepted.

The whirlwind I referred to came about because of an unexpected follow-up. When Cancer Connections first launched in Toronto, CBC News: Sunday ran a segment featuring a photographer/subject pair. We were asked if we'd like to be taped for a similar piece for the Montreal launch. We said yes, and the "whirlwind" was the prep and shooting of the segment. (We don't know exactly when the segment will air as yet; just that it will be on a Sunday—of course—sometime during the run of the exhibition in Montreal.)

So tomorrow is another whirlwind. In the morning we're off to the launch at the Place des Arts Esplanade; it's an invitation-only thing, complete with mayoral speeches and wine I can't drink, but at some point in the day the exhibit opens to the public. It's scheduled to run until September 28, and will continue touring Canada for two years.

Labels: Emru, events

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.

Coda:

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.

Labels: comics, Emru

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.

Labels: Adrian Sudbury, UK

The Notting Hill carnival in the UK is one of the largest Caribbean carnivals in the world and Europe's largest street festival. The African Caribbean Leukemia Trust is the official charity for the second year in a row. Through their tireless efforts, they have assisted in over a dozen stem cell donor matches, and have increased the number of potential donors who fit this profile in the UK from 550 to 25000 people in a little over a decade.

On Sunday 24th and Monday 25th August more than 1.5 million revellers are expected to watch the thousands of artists perform. Additionally they will all have the opportunity to take 30 minutes to register as potential life savers at the ACLT registration drive, by completing an application form to join the British Bone Marrow Registry which is administered by the National Blood Service (NBS).

Check out ITV Local’s Notting Hill Carnival Channel 2008 (Official Online Media Partners to the Notting Hill Carnival) http://info.itvlocal.com/acltmain.shtml

Seven-year-old Dean Sheikh and his family will be present at the clinics encourage people to sign up. His family are Pakistani and they are hoping more South Asian donors will come forward.

The ACLT helped to spread the word of Emru's need for a donor, and I can personally attest to the determination and commitment of this charity.

Labels: ACLT, bone marrow donor clinic, London, minority donors, Notting Hill, personal appeal, UK

Please note: the message title refers to the Art of Noise song (from the Paranoimia album), not the ZZ Top song. Though I indeed know how to use them.

First and most important: I don't know if it's the chemo, the painkillers, or the new massager, but my legs hurt a lot less. Make no mistake, they're not cured in any way. They're still shiny, which indicates it's a leukemia-related problem; and they're still tender and very hot to the touch. But the agony is gone, and that makes things far more manageable. Getting into or out of a chair or bed, and especially getting out of bed after an hour or two, causes a lot less pain, and is easier to deal with. I don't have to keep moving my legs to stave off pain. Just the mental stress level of pain management has decreased drastically. Meanwhile, Vicky ordered an picked up a pedal exerciser—meant for therapy and such—for under forty bucks after she pointed out that my plan of using my bicycle mount would still cause problems getting on and off the bike.

Another case of credit where it was due: when I was describing different aspects of my legs problems for the nth time in hospital, I mentioned that walking downstairs was a lot harder than walking up stairs. My dad's smartass comment: "So walk downstairs backwards." (He says now he was brainstorming, but I know his smartass voice.) My reaction at the time was "Hahahahawait— different muscle group." When I got home and started to struggle walking downstairs (even after the painkillers etc., it's more work) I turned around—and damned if it isn't even easier than walking upstairs.

Labels: Emru

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.

Labels: Emru

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

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

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

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

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

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

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

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

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

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

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

Labels: Emru