Please consider reposting. Thank you. Do not underestimate the power of making yourself heard.

This is the second US bone marrow drive in which I will assist, and I look forward to meeting you and answering questions. This type of drive is not done in Quebec, despite how effective it can be. A person can match another person anywhere in the world, so off I go.


When someone needs a bone marrow transplant and none of their family members are a match, the registry searches for a donor whose tissue type profile is compatible. 70% of people requiring a transplant need an unrelated donor.


Representatives of the National Marrow Donor Program and volunteers from the fannish community will be running an information table and registry drive. Registration itself is simple and painless: all you have to do is swab your cheek and fill out a form. To register you must be between the ages of 18 and 60 and in general good health.

Legislators in several US states have passed laws that make it mandatory for most insurance companies operating in these states to pay the cost of registration. Please bring your health insurance card with you. If you live in RI, NH, or MA you can register at this event at no cost.

More than 35,000 patients per year, many of them children, are diagnosed with diseases treatable by marrow or stem cell transplant. These diseases include leukemia, lymphoma and other cancers and genetic diseases.

A person looking for a stem cell match may find one potential donor in a pool of 20,000, or 1,000,000, or more. The most likely match for someone is a person of the same or a similar ethnic background. No one is guaranteed a match, regardless of background, but ethnic minorities are especially underrepresented and patients have even less chance of finding a matching donor, since ethnicity plays a critical role in increased chnces of matching. Then they have to hope that person is on the registry. You might be the match necessary to save a life.

Many people do not consider donating because they may not know they can help, but also because they have misconceptions about the donation process. The drive is a great venue for getting your questions answered.

The inspiration for this drive is the thousands of people who are waiting on any given day for a donor.


One of them was Emru Townsend, a fan and critic. Instead of writing about animation, comics, and technology, last year he spent his time writing about how people could save his life, or that of someone just like him at healemru.com. This drive is in his memory.

Even if you are not eligible to give blood, you may be eligible to be a bone marrow donor, so please do not select yourself out of the process if you are interested.

Labels: bone marrow drives, conventions, Emru, free registration, Massachusetts, NMDP

Each year The Animation Guild, ASIFA Hollywood and Women In Animation present a non-denominational celebration of departed friends from our animation community. It will be on Saturday, February 7 at the Lasky-DeMille Barn in Hollywood across from the Hollywood Bowl. The 2008 honorees include

John Ahern, Gus Arriola, Phyllis Barnhart, Gordon Bellamy, Harriet Burns, Greg Burson, John W. Burton, Jr., Vivian Byrne, Joyce Carlson, Bob Carr, Rose Di Bucci, Charlie Downs, Ray Ellis, Joni Jones Fitts, Etsuko Fujioka, Steve Gerber, Fernando Gonzalez, Yoo Sik Ham, Larry Harmon, Margie Hermanson, Ollie Johnston, Ted Key, Eartha Kitt, Andy Knight, Harvey Korman, Lyn Kroeger, Brice Mack, Bill Melendez, David Mitton, Gary Mooney, Jim Mueller, June Nam, Ethan Ormsby, Bill Perez, Richard Pimm, Oliver Postgate, Denis Rich, Dodie Roberts, Irma Rosien, Gerard Salvio, Gina Sheppherd, Robert Smith, Jim Snider, Al Stetter, Dave Stevens, Morris Sullivan, Emru Townsend, Pat Raine Webb, Chiyoko Wergles, Bob Winquist and Justin Wright.

(Thank you, Karl Cohen)

Labels: Emru

So. The bone marrow drive was a complete success.

There were 2000-2200 people estimated to attend Arisia, so we went with 20 people as a reasonable number of registrants. This is something new, and even when reactions are positive, usually only a handful register. For instance, someone in Toronto did and event where 7000 people attended and 200 registered online so they could get their kits at home. This is seen as a success although it is proportionally less than 20 people registering at Arisia. Also, many people in that 200 did not return their swabs.

Seventy-one people registered with no pressure on Saturday. There was almost always someone signing up at the table. There were sometimes 2 people but almost never 3 signing up. This made the event very orderly. The annual blood drive (which also had a record year) was a few tables away, and the fan who runs it also mentioned he has been in the registry for many years. He is also a regular platelet donor.

The Naughty Nurses performed skits on Friday night and on Saturday before other events to highlight the good work being done by the blood drive, and created a skit for marrow as well. Unfortunately, I got tied up and did not get to see it on Friday night (hmph).

Because of the success on Saturday, Darryl from the CRIR returned on Sunday and 19 more people signed up, making a total of 90 new registrants.

I also met quite a few people who were already registered. I met a very nice young woman who donated twice and saved a man's life. I met a teenager that received marrow when she was very young from a relative (unfortunately, her donor died two days later from completely unrelated circumstances, and instead of saying, "Someone saved my life in the nick of time." she had been telling people, "Someone donated to me and died two days later," making them think the donation was the cause - Sigh.)

No one was pressured into signing up. Quite a few people took information and said they did not know enough yet and wanted to learn more after the convention then decide, which is fine by me! Both Hema-Quebec and OneMatch have cited that one of the reasons they do not run drives is that people feel pressured to do it. BS. We told people it was happening, and we told people the facts.

With some preparation and the right materials available at the table, compassionate people came of their free will. The drive took up one table, and in addition to the swab kits and consent forms, a few boxes were brought with sweaters, bags and pins for registrants. I brought my pins and some of my Heal Emru business cards.

My friend Val made this happen and has begun the work for another drive next month at Boskone. She and I will be there, too.

Some people could not be marrow donors, so we directed them to the blood drive if they were eligible, and the blood drive did the same for us. Emru would not have lived to see his transplant if he had not received transfusions to keep him alive. (I say this in addition to ALL the great reasons to give blood).

The event was much more emotional for me than I thought it would be, but it felt great and I also heard many positive stories related to the issue and received lots of excellent feedback.

Labels: Arisia, blood drive, bone marrow drives, conventions, CRIR, Emru, free registration, Massachusetts

Here's to new beginnings in 2009.

The seventh and last principle of Kwanzaa is faith. People turn to others for comfort, support or help, hoping another person will hear them and help them. Sometimes people just have faith that their circumstances will change for the better.

Emru knew that he might not find a match, but he hoped for the best. He put his faith in his family, his friends, and many other people, including complete strangers. Every day thousands of people turn to the bone marrow registry in the hope that someone will be there who can and is willing to help them. He hoped someone would register and then be willing to donate to him, but he knew that each person who got registered was giving hope to each person (and all the people who cared about that person). He had faith that good was being done and held out a belief that things would likely turn out positively for him, and if not, someone else. It was a great day when he found out he had a match.

I remember a phone call I had with Emru that ended in tears for both us. I gave him a picture of him dressed as one of his favourite heroes, and he said he knew he was going to get the transplant and beat the leukemia. He was right about the transplant, at least. But his faith got him very far, and mentally he was in a good place when he left us.

Faith is not always rewarded, but it is rarely rewarded without taking some form of action while maintaining an attitude that things will move into a positive place. If you want to believe in something, do so fervently, but make a change, however small, to see it come to fruition.

Faith endures: the struggle continues.

Labels: Emru, Kwanzaa

The sixth principle of of Kwanzaa is creativity.

I don't want to make another overly long post, but this was a principle dearly cherished by Emru. His love of animation, comics and writing, film were superlative. His creative energy allowed him to work on so many projects. He also cared a lot about the people behind the art he loved, and forged many friendships with those with a creative spark at every point in his life.

That creativity helped a lot this year to find his match as well. He was touched to his very core (as was I and many others) by the illustrated and photographic images people created as people tried to find ways to help spread the word about Emru and others. Emru's words also expressed what he was going through and he could have chosen to write some very angry words but did not. Friends used their words to help explain why Emru needed help and why others needed help too.

When times were tough, these words, images and other creative expressions were like anchors to reality when everything else seemed unreal.

It reminded us that people cared and had great beauty inside them, and that is what makes life is beautiful.

Labels: Emru, Kwanzaa

The first day of Kwanzaa (Umoja) celebrates unity. In terms of the African community around the world, it was easy for Emru and I to see how this was a global problem and and to also understand the effects of our history and various migrations had on the very current issue of the registries around the world and why it made people of African descent - especially from the Caribbean - so very difficult to match.

It made working with an organization like the African Caribbean Leukaemia Trust a no-brainer. They were committed to helping patients from all over the world. They understood your location was not important.

While unity also meant asking people on a fundamental level to redefine who they thought of as family to illustrate the importance of people within a same or similar ethnicity being the most likely match for another person in that group, it also meant rallying people within that group to come together to help others in need. Unity came in the form of ethnocultural community, a life an death matter in terms of finding a matching donor, but also extended to the unity of offline and online social networks.

I am already wired this way, and it is not spontaneous; it is a learned response over so many years that it feels natural. Emru and I like to help, strive to find answers, and believe in the power of numbers and our potential. We are like this because our parents have inculcated us with a strong sense of who we are, ethics, and belief in our potential and that of others. I believe it for myself, my community, or rather my communities, be it ethnic, cultural, geopolitical, virtual, or intentional.

Patients and their families united to help each other, and we all put our heads together with friends and strangers to try to find solutions. I asked my friends to register for the European, South Asian, East Asian and multiethnic patients who I knew were waiting for a lifesaving match. They did the same for the African community. Unity is instantly scalable to a global level.

We both knew there is power in many people doing a little (sometimes a lot to cover those who didn't feel the same way) to do big things and help one another. And it paid off, not just for Emru, but for at least two others who needed matches, and hopefully others will be on the registry in the future for someone else in need.

If you seek to help one, you help everyone. We are all in this together.

Labels: Emru, Kwanzaa, minority donors

Happy holidays, everyone.

Vicky, Max, Patsy, Beverly and I returned to Montreal early yesterday morning. After driving from Montreal, to NYC, to Lake Worth (near Ft. Lauderdale), we hopped on a plane to Jamaica. We spent six days in Ocho Rios. Our friend Kelly and I flew down to Ft. Lauderdale on the 15th and were present so our whole crew could help Max take his first plane ride back since he was 2. It was pretty traumatic back then, so but he did better this time. Thanks to all the familiar faces, some noise-cancelling headphones to help with his over-sensitive hearing and sitting far away from the engine.

I also want to mention when we got off the plane, another plane from Manchester, UK, landed right after us. I was mostly watching Max but I looked back at the passengers and looked directly two faces I had previously only seen on BBC News, Facebook and YouTube: Sarah Murray-Thompson, who needed an unrelated bone marrow donor and had a successful bone marrow transplant, and her husband Mark. I went over to them and lost all of my words. I barely squeaked out, "Tamu... It's Tamu." After greetings and extending condolences we marvelled at what the odds would be that we would all meet like this. Sarah continues to raise awareness about the need for more black and mixed ethnicity donors and funds for the African Caribbean Leukaemia Trust.

We took some much needed rest at a resort. Fortuitously, two of our friends live right next door to the resort, and we also visited a few members of our extended family and friends in the short time we had in Kingston. The Rockfort Mineral Baths were closed for the season, so my parents spread some of Emru's ashes in the water nearby. I also spread some of Emru's ashes in my late aunt's garden when we got to her place. Two cities out of three requested cities down. Montreal can wait until the snow melts.

When it was time to leave, we got Max on the plane and he did very well. His new catchphrase is "[Insert name] so proud of me?" because he heard us tell him so many times. Emru would certainly be proud of him for conquering his fear, especially dealing with a very real discomfort. In fact, when we landed he remarked that taking a plane was fun! During the later stages driving back home, he inquired about taking a plane alone.

We drove back from Florida, first stopping by family on both Beverly and Patsy's side, as well as some good friends in that state. We left the state and drove through Georgia, South Carolina, Virginia, Delaware, DC, Maryland, New Jersey and New York. We did it in two days because we were having a good time, but it was time to go home. Because we drove through the night, Max forced himself to stay awake for most of it. When he got home at 5:00 am, Max went to bed for a nap and was up very soon after, and wanted to go for a drive! Beverly and Max drove me home in the mid-morning so Max could get his fix.

Of course, we talked about Emru a lot. I think we all had our internal conversations going as well.

I'm not much of a Christmas person these days, and my family has celebrated Kwanzaa anyway since the 70s, which is a lot less about the gifts in our household and more introspective. Whether you've just finished celebrating Chanukah or Yule, are celebrating now or about to celebrate, all of these festivals are really about one thing: family, friends and community. So if you celebrate these ideas and put your ideas into practice everyday, I think everyone reading has been celebrating the entire time. We are so grateful for the help you have given our family and to the countless people you are also trying to help.

Enjoy your holiday and all the best to you and your family, from me and mine.

Labels: ACLT, Emru, minority donors

This is the first posting that I have done as I too enjoyed reading Emru' s descriptions of the going ons.

I have to start by saying that this past year has been emotionally draining, but on the up side, Emru and I had many opportunities to say goodbye, painful as it was. The time we spent together, during his chemo treatments, recovery times and his feeling good times (especially at the beginning of May) where I could almost believe he wasn't sick, was time cherished. When we married, we did so in sickness and in health, and I know that everything I did for him throughout this journey, had the roles been reversed, he would have been there for me as well.

On the Saturday before his died, Emru and I talked about what he wanted in regards to his funeral arrangements, what he wanted to wear and as he wanted to be cremated, where did he want his ashes to go. He said he wanted the ashes scattered in three places; Brooklyn, NY, Kingston, Jamaica and in Montreal, QC. Why these three places? He said he spent a lot of his childhood in them and felt that's where he needed to be.

A week or so after his death, Emru's parents, Max and I went out for dinner and I told Beverly about a conversation I had with one of Emru's cousins. I had told him, after the funeral was over, I just wanted to put my butt on a beach. His response was there's there a beach 10 minutes away from me (he lives in Lake Worth, Florida). So I said to Beverly, road trip? As we started talking about more details, which included stopping in NY, I said, can I add something crazy to this? What if we drive to to NY, then end up in Florida, and then fly out to Jamaica from there. We could cover 2 out of the 3 places that Emru wanted to be. Also, Max doesn't like airplanes and we knew that that flying would be challenging but seeing as it was a direct flight from Miami and only a 90 minute flight, we thought let's do it.

So our itinerary looked like this:
December 10th - road trip begins
December 15th - fly to Ocho Rios
December 20th - fly back to Miami
December 22nd - start heading back home

December 10th - start of the road trip.
Beverly and I picked up the rental car, in the snow and I chuckled as I thought, good thing we're leaving.
Got into Brooklyn around 9PM and stayed by Emru's uncle and aunt's house.
The next morning, Emru's parents and I went to the location that had been selected, while Max stayed with Emru's uncle.
After spreading his ashes, we got ready for the next leg of our road trip, Florida here we come.
It was only in the car later in the day did I realize that it was December 11, one month after Emru's death, and we had taken care of one of Emru's requests - how appropriate.

Labels: Emru

CBC News: Sunday shot an interview with Emru before he died that did not run due to election fever late last summer and early fall. It will be on a few times tomorrow on CBC Newsworld and CBC TV.

Here is the information:

9 am - CBC Newsworld edition
10 am - CBC TV edition
9 pm - CBC Newsworld repeat
10 pm - CBC TV repeat
midnight - CBC Newsworld repeat

It will most likely be a segment in the first hour of the two-hour program. Changes in the line up are still possible.

His wife took some beautiful photos of him and they were accepted in a national photo exhibit about cancer patients. This is their story.

It will be on the homepage for a week at www.cbc.ca/sunday, then will remain on line but will move to the Archives section of the website.

Labels: Emru

I was interviewed on the DryerBuzz podcast and discussed How Being African American Can Save A Life.



Leave comments about the show online.

The hostess read my brief messages broadcast on Twitter.
Here's how you can find me, her, DryerBuzz, and Heal Emru there.

Labels: #blck, Atlanta, Emru, Internet, minority donors, United States, US

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

Labels: ACLT, Emru, NMDP

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 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

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

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

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

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