It's doubtless that more people know about stem cell donation now and also learned that the most likely match is someone of the same or a similar ethnicity. But many people still aren't aware. It's just that these things take time.

Many people also think that hundreds and even thousands came forward in the Canadian black community to register when they heard of Emru's need and that of others. Before you read onward I want you to figure out a realistic number of people who came forward in Quebec and Canada in the Black community since February 1 and write it down on a piece of paper. Now keep reading.

First some population statistics:

Black people in Canada
approximately 800 000

Black people in Quebec alone
approximately 200 000

Black people in the greater Toronto area alone
approximately 345 000

This data was received on November 12th, 2008, directly from OneMatch and Hema Quebec. Here are the numbers from when we started this appeal, February 2008, and at the end of October 2008.

NOTE: I overreported this number as being 1633 black potential donors in Canada as of March 31, and I am taking steps to address this. It would help if OneMatch or Hema Quebec made the simple effort to publish more solid numbers on their website.

Black people who should be on the registry to create high rate of matching
approximately 80 000

Black registrants in Canada on Feb 1, 2008
1094*

Black registrants in Canada in October 2008
1226

New black registrants in Canada between February and October
132

Black registrants in Quebec on Feb 1
Less than 10

New black registrants in Quebec between February and October
24

Tell me what you really think, as long as it's constructive. Because if you sincerely believe the statement that nothing can be done to rectify this you are right and part of the problem. If you don't believe it, you are right and can make a real change.

The people who registered, or tried and found out they were ineligible have my eternal gratitude. Those who spread the word are equally important. You have my thanks.

But we must consider how we are going to operate in the long term... and keep going.

Create your own note and cut and paste this information if you want others to know. You can also blog about it or discuss it face-to-face with someone you know.

Labels: Canada, Hema-Quebec, minority donors, OneMatch, Quebec

There is no funeral at Emru's request. Instead, there will be two days of visitation. Feel free to find me whether you know me or not, and ask me any questions you may have about registering as a potential donor.

The general public is welcome to join friends and family in recognizing a life well-lived.

Rideau Gardens
4275, boul. des Sources,
Dollard-des-Ormeaux, QC
H9B 2A6
Telephone: (514) 685-3344
Toll-Free: 1 (800) 657-5678

Saturday November 15
2:00 pm to 5:00 pm
7:00 pm to 9:00 pm

Sunday November 16
2:00 pm to 8:00 pm

In lieu of flowers, please learn more about how to get registered to be a bone marrow and stem cell donor. If you are eligible, consider registration, and if you are not, tell someone why it is important and how easy it is to register.

Donations can be made to:
African Caribbean Leukaemia Trust www.aclt.org
National Marrow Donor Program www.marrow.org

Emru took his last breath just before 10 pm tonight. He died peacefully surrounded by his family.

He taught me how to live. He taught me how you are supposed to die.

Emru's name means RESPECT.

Emru, the person, also means compassion, learning, teaching, sharing, love, integrity, honesty, and inspiration.

He taught a lot of people a lot of things, but he spent 2008 teaching people how to reach out to one another in a whole new way. If you carry some of this forward, it will be a year even better spent.

Thank you for being part of his journey.

Labels: Emru

Hi everybody,

I'm very sorry, but Emru is not taking any more visitors that are not close family members, with very few exceptions.

His energy is limited and he expends lot of his energy on physical and mental tasks that are simple for the rest of us.

Emru is on pain medication,and he is no longer taking other medications or constant fluids. We are trying to keep him as comfortable as possible in these last few days.

He understands that he is well-loved, and that if he must leave soon, he can do so without guilt or regret. Our immediate family - Vicky, Max, Emru's and Vicky's parents, myself, and Emru's aunt who took care of him in early childhood - took the opportunity to tell him this today in our own ways.

I will keep you apprised of further developments, and hope you will respect the privacy of the family during the next few days.

Thanks,
Tamu

Labels: Emru

The Month of November is National Marrow Awareness Month in the US. Online registration with the NMDP is free.

November 3-9, 2008 is Canadian Stem Cell Awareness Week. Go to the OneMatch site to find out how to Spread The Word.

November 17-23, 2008 is Anthony Nolan Week in the UK. Check the Anthony Nolan Trust media centre for their latest YouTube video.

So let's try and build some awareness: here are 5 important points that you should know about registration and donation.

1. 70% of people requiring a stem cell transplant need an unrelated donor.

The first choice is a family member, but more people will have to rely on a stranger.

2. Register by providing a blood sample in Quebec or the UK, or a cheek swab sample in the rest of Canada or the US.

In the US, UK and most of Canada, you can even fill in your registration online and get a kit sent to your home.

This is a free service in Canada and the UK as well as many other countries. In the US, there are ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicity. For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match.

Then they have to hope that person is on the registry.

The most likely match within the general population is someone of the same or similar ethnicity.

Labels: Anthony Nolan Trust, Canada, events, free registration, NMDP, OneMatch, online registration, UK, US

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 those 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.

Labels: Emru, GvHD

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.

Labels: Emru, fever, transfusions

Important message from Laurent Paul Ménard, director of external communications from Hema-Quebec:

Hema-Québec web site will go through a major redesign process and we expect to be online with a new version in early spring 2009.

We are currently addressing and auditing existing contents and gathering information. Your suggestions will be gladly welcomed.

Please send your comments/suggestions at : Laurent-Paul.Menard AT hema-quebec.qc.ca

Regards,

Laurent Paul Ménard
Directeur des communications externes,
Héma-Québec

Labels: Canada, Hema-Quebec, Quebec, web

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.

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

If you know anyone in England or have friends who do, regardless of background, please let them know about this registration drive occurring on Saturday. It only takes a small blood sample in the UK, and actual donation should you ever match someone is neither risky nor dangerous. Over 70% of people need to rely on a stranger likely of the same or similar ethnicity.

REGISTRATION DRIVE

Saturday, October 18, 2008
11:00am - 4:30pm
Barclays Bank
126 Station Road HA8 7RY
London, United Kingdom

Facebook event (with directions)

It doesn't take much time to register and requires a teaspoon of blood. That's it. If you match, you will be guided every step of the way. The ACLT's current campaign is Heroes Wanted. You don't have to run into a burning building or have superpowers to be a hero. Just a willingness to help.

ABOUT THE AFRICAN CARIBBEAN LEUKEMIA TRUST

In early March, I learned about a young man named Daniel De-Gale and an organization named the African Caribbean Leukemia Trust.

I found them on Facebook and Youtube. I was immediately gripped by the dire numbers of available Caribbean donors in the UK, and amazed that a small group of volunteers worked hard to raise the number from 550 potential donors to 25000 in a little over a decade.

The ACLT has been instrumental in getting the word out about the issue, and also posted Emru's appeal. Since our first contact, Daniel's mother Beverley has been a huge support, and has followed Emru's story every step of the way, as well as being a part of it. They have posted the appeal of other people I have mentioned before: Carolyn Tam, Angela Christopher, Yvette Gate, the late Helen Ross, and Graham Barnell.


ABOUT DANIEL DE-GALE

The ACLT began because Daniel fell ill as a boy and needed a bone marrow transplant. His family found out there were not enough people registered and sprang into action. They have not stopped since.

A willing donor was found in the US and saved Daniel's life. Check out this video of Daniel meeting his donor, Doreene.

His parents formed the ACLT and encouraged that amazing number of potential donors even though more are needed and have facilitated 20 matches for ethnic minority recipients, including people of mixed ethnic descent, who are even less likely to find a match.

Last week, young Daniel passed away at age 21, due to reasons not related to the cancer. Just days before he had given a speech asking people to continue signing up as potential donors.

When I did not know what to do, and was losing hope, Daniel wrote me and got me in touch with his mom. He told me that there was a light at the end of the tunnel and to stay the course. I never got to thank him in person for this.


WHAT WE CAN DO

Please learn more about the ACLT. And if what you learn moves you to act, consider doing one or more of these things:

- If you would like to offer condolences or just help out the charity, donate in Daniel's name, as per the family's request. If you are in the UK, you can even donate 3 pounds via text message.

- Check out the ACLT website http://www.aclt.org or the YouTube channel acltcharity.

-Tell someone why it is worth it to learn about donation and to tell others.

As always, thank you for caring!

Labels: ACLT, bone marrow donor clinic, donor stories, minority donors

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, fever

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