February 12, 2009
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.
MAJOR UPDATE 2nd Day Added!
Sunday 10:00am ~ 2:00pm
SAVE THE DATE!
Saturday, February 14th, 2009
10:00am ~ 6:00pm
Westin Waterfront Hotel, Boston
Boskone 46: 2009 Science Fiction Convention
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.
We are not wise, we humankind,
who live a little time and die.
What can we do against the night
but weep, and rage, and question why?
For what are we but bone and blood,
and speaking voice and loving heart?
We share what help and hope we may
Together now, before we part.
But if we do not speak, or love,
or offer blood, or bone, to save
another breathing human life
who'll live to love because we gave...
what are we then but cold, alone,
the chilling blood, the empty bone?
- Jo Walton, Boskone 46 Author Guest of Honour
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.
February 6, 2009
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)
January 25, 2009
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.
January 1, 2009
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.
December 31, 2008
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.
December 26, 2008
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.
December 25, 2008
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.
December 22, 2008
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.
December 20, 2008
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.
December 2, 2008
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.
November 13, 2008
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.
4275, boul. des Sources,
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
November 12, 2008
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.
November 8, 2008
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.
October 29, 2008
I'm back! Actually, I've been home since last Friday, trying to readjust.
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.
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.
October 23, 2008
It was on the evening of Day Zero—my second, not my first—that things started to go south. The chemo kicked in, my blood counts dropped, and I generally started to feel like crap.
Partly because of the time passed, and partly because of my condition at the time, I don't remember the exact chronology of what happened when. So what follows is a loose rundown of approximately the last two weeks of September:
- I ran a couple of fevers for a while, which probably wasn't helped by my tendency to wrap myself in my blankets like a tortilla while sleeping. In my defense, the room has something of a draft that is not at all fun at night.
- As was to be expected, I slept a lot. What I didn't expect was how demanding my body would be in its desire for sleep. More than once I'd be doing something innocuous, like, say, deciding what to eat first from my lunch tray, and I'd fall asleep for anywhere from five minutes to half an hour. Then I'd wake up, realize what happened, go back to trying to decide—and I'd nod off again. Once, I even woke up partway through a transfusion I had no idea had been started.
(Speaking of which, for over a month I've been keeping it in my head to mention that I'd had another platelet transfusion. Current count: 42 blood, 14 platelet)
- Eating became an issue at this point because my taste buds were just beginning to regard food with suspicion—I'd sometimes feel slightly ill just at the thought of certain foods. Rather than wait for things to get out of hand, I asked for a nasogastric feed tube (a tube that goes in one nostril and down into the stomach; not unbearable to put in, but I'm not lining up to do it again.) It turned out my timing was excellent as I got my first mucusitis-induced mouth sore, in the back of my throat no less, that evening.
- My right leg, which had been starting to cause trouble even before I came to Ottawa, got much worse. It swelled to a shocking degree, eventually growing to more than twice the size of my also-swollen left leg. I lost track of how many baffled doctors looked it over. An ultrasound and CT scan revealed nothing, but an MRI eventually showed an abscess. But what caused that,or for that matter the swelling? Since I was already receiving a battery of antibiotics, a "wait and see" approach was taken, which has mostly worked thus far.
- Spending so much time in bed wreaked havoc on my already diminishing muscle tone. By the end of the month I needed a cane, walker or wheelchair to get around, if my chemo-induced fatigue relented in the first place. More telling were the simple things I couldn't do: lifting the MacBook with one hand was risky, with two was a chore; I needed help showering; even opening a can of Ensure was impossible to do on my own.
October 19, 2008
Finally, the belated sequels.
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.
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.
October 3, 2008
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.
October 1, 2008
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.
September 30, 2008
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.
September 23, 2008
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.
September 22, 2008
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.
September 17, 2008
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.
September 12, 2008
Before I write about the future, I need to correct the past. Not ten minutes after I'd written yesterday's post, my night nurse came in and hung a new 1L bag of saline on the stand. That meant that over a 24-hour period, I got just about 2.25 L of water (and 0.9% saline)—essentially, those 8 cups of water I need daily to deal with the busulfan. I thought about it and realized the binder (which I really must finish) is written for the majority of bone marrow transplant patients here, who are treated as outpatients. So that was to make sure they drank 8 cups of water while they were home. Inpatient that I am, it just gets put out in bags for me. Still, nothing wrong with a beverage now and then.
Now, on to the future.
In talking to friends and relatives, I've discovered there's a lot of misunderstanding about the process of what I'm going through. So, in an effort to keep from repeating myself, here's the broad overview.
From Sunday to Wednesday, I had four daily fludarabine treatments. It was pretty mild, as promised. I started the Busulfan as promised, and as promised it was a bit harder. Still easily tolerated—no nausea—but still almost guaranteed diarrhea (check) and a menace to liver and kidneys, as I mentioned yesterday. I had to take a bunch of extra drugs for that yesterday, and a few less extra drugs today.
The Busulfan (which I keep wanting to type with a 'ph') ends on Sunday, and then we give my body a break. It's important to remember that no matter how well I physically respond to chemo, it's still the same horror inside I described a while back; every chemo, including the two I did as an outpatient, weakens my body to some degree. This combo of chemo not only wipes out all my marrow, it wipes out any quickly-multiplying cells. That includes not only cancer cells, but other, perfectly normal and healthy cells that always multiply quickly.
Anyway, on the 14th post-Busulfan, I get ATG, an anti–T-cell medication. Yes, T-cells are designed to detect incoming viruses and other foreign intruders, but in this case we want to switch that ability off to let the new marrow to do its thing, hopefullly warding off graft vs. host disease (GvHD). Potential side effects from ATG include flu-like symptoms and allergic reactions. Joy.
On the 15th, I get started on my old pals fluconazole (anti-fungal) and acyclovir (anti-viral).
On the 16th, 48 hours after the Busulfan dose—the early afternoon—I'll be getting my transplant of stem cells.
First, an explanation for those who haven't been around the whole time. We talk about bone marrow, but what transplant recipients like me really need are healthy stem cells. Bone marrow contains plenty of the stem cells we need, but times have changed. In 70% of all extraction cases, we get the required stem cells through a process called PBSC (peripheral blood stem cell) extraction. This process is similar to donating blood, except the donor gets change: the blood is extracted through a needle, which takes the blood to an apheresis machine, which separates the stem cells from the rest of the blood. Anything that isn't needed for the extraction is returned to the donor. As for those remaining extractions, yes, those are actual bone marrow—a spongy red tissue.
Either way, my transplant works the same. Not through any kind of operation, but by pumping the stem cells/marrow through my chest catheter, the same way as I get my blood transfusions, for example. As I understand it marrow transplants take three hours or so (don't quote me on that); my transplant, which is of stem cells, is 60-80 minutes (two units, 30-40 minutes per unit).
"But wait," you might ask. "I have been following your posts, and you've mentioned that your catheter is a central venous catheter. That is, it goes into your heart to get pumped into the bloodstream. So how do the stem cells get to inside your bones, which is where they'll generate the new marrow?" Ah, that is the freaky part, the part that medical professionals marvel over but don't question, because hey, it works. The stem cells know where to go and they just get themselves there.
A moment's pause for the awesomeness of creation, please.
I will have photos taken of me with the bags, and maybe one or two of me standing next to the pump as the stuff is going into me. Other than that, I plan to curl up with a book or movie or something to pass the time. Aside from getting a new birthday (my fist birthday was made up of two multiples; my second is made up of two squares! Awesome!) it's really quite boring.
Around now I'll be put on tarolimus, an anti-rejection drug and another means of anticipating GvHD. If there is no GvHD, I'll only need it for 4–6 weeks. If there is GvHD, then I'll need to take it for at least 3 months before tapering it off.
A couple of days after Day Zero is when the excitement starts. As before, my counts (for white blood cells, hemoglobins, neutrophils, platelets, and other blood components) will start to drop, which is when I'll start to get tired (low hemoglobins) and particularly vulnerable to bugs without and within (neutrophils and white blood cells make up the immune system's front line).
This is when the doctors start really paying attention to me. At the first sign of a fever, for intstance—and I will get one—they swoop in to find out what's causing it, and if they can't do that right away they pump me up with a variety of antibiotics until they can. (Earlier this year, when I had that horrible fever that had me clutching ice bags to my body, a doctor casually informed me a few days later that what got me was a strain of e. coli that was resistant to the drug I was being administered. They switched the drug, and the e. coli didn't have a chance.)
The docs will also be scoping me daily for the first hint of mucositis, and monitoring its progress. The fear there is that the sores will go far enough down my throat that I will be physically unable to eat much—and we've been working on getting more protein and calories in me to get my weight and muscle mass back up. If it comes to it—and this happens in many cases, I'm told, no matter how much people eat to avoid it—it's time for a feeding tube to be inserted into my nose and down to my stomach. (The width of the tube is somewhere between the size of my MacBook power cable and that of the Ethernet cable. And apparently I won't feel most of it... but I figure I'll feel enough!) The advantages to a feeding tube are that it can be clamped off when not in use, so I can walk around. Also, I'm guaranteed to get the nutrition I need (and keep my stomach exercised) no matter how iffy the food is tastewise. But still.
Two to three weeks after Day Zero is the show we're all waiting for. That's when the new marrow should engraft with my body. Speaking to the transplant doctor, he said he's never seen engraftment not happen, except for one case. They boosted the patient's body with fligrastim (the same stuff they use to boost donors' stem cell levels if they're donating via PBSC), and everything went fine after.
Assuming everything goes well, I'll be out of here in early to mid-October. Of course, things aren't over yet. The first 100 days are crucial. I'll be spending much of my time in self-imposed exile at home, both working to get back into shape and resting. I'll have weekly checkups, but in Ottawa. I'll still have to be careful about what I eat, etc., as the immune system will still be rebuilding itself. There are a bunch of other issues as well, such as lichenoid texture (leather-like skin) which can happen a year after Day Zero. It's treatable and it does go away, but it's symbolic: I don't really and truly count my lucky stars until a year after the transplant, when all (most?) of its side effects go away, and my bone marrow biospsy comes back clear.
September 11, 2008
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.
September 8, 2008
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.
September 7, 2008
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.
September 3, 2008
What a day.
After getting Max off to school, Vicky and I dolled ourselves up and headed straight out to Place des Arts for the Cancer Connections Montreal launch I mentioned yesterday. Although we left late (fresh pain in my leg slowed me down considerably) and had to get through heavy traffic, we somehow made it on time. I could tell the whole story here, but pictures, appropriately enough, do it better. I've put a handful of photos from the morning up on Flickr.
You can see the entire photo collection online, but I recommend going to see them in person. It's a free outdoor venue, and seeing them all arranged on the esplanade can pack quite an emotional wallop—but it's also an amazing testament to the diversity of cancer experiences, and something about seeing these under the open sky makes the overall experience more positive than anything else. The exhibit will be in Montreal until September 28.
After that we had to head to the hospital for a blood test, a dressing change for my catheter, my checkup and a CT scan to hopefully find the cause of the continuing congestion that has been affecting my hearing for over a week. Only the CT scan had a fixed time and everything else was kind of a crapshoot, but the stars aligned and everything mostly fell into place. (Except for the extended time I had to wait for the radiology folks to clear through their CT scan backlog. When you're leukemic it's already hard to stay warm; when your blood pressure is low it's even harder. Even under several blankets, I was freezing for quite some time.)
But the truly exciting news came when we were on the road, between exhibition and hospital. Checking the answering machine at home, we discovered we'd received the call we'd been waiting for from the Ottawa Hospital. My Day Zero—the day of the transplant, my new birthday—is September 15. However, I will actually be admitted to start my transplant prep this Saturday.
So much to do, and so little time to do it. But the timing couldn't be better, given my circumstances. My leg is getting worse—I'll actually need a painkiller tonight—but otherwise I've been slowly regaining my strength. Starting this while I'm on the upswing is, as they say, just what the doctor ordered.
September 2, 2008
Last week I hinted at a "whirlwind" Vicky and I were expecting one afternoon. It's kind of last-minute, but here's the full explanation.
A few weeks ago Vicky was poking around the Canadian Cancer Society website when she discovered a touring photo exhibit featuring cancer patients. It was called Cancer Connections, and they were looking for submissions for the Montreal leg of the tour. We got the negatives from Vicky's various photos of me, and brought them over to our good friend Marc Elias. He scanned our two favourite photos at the requested resolution and worked his Photoshop magic to get just the right contrast and detail. In the end, one of the photos—one many of you will recognize—was accepted.
The whirlwind I referred to came about because of an unexpected follow-up. When Cancer Connections first launched in Toronto, CBC News: Sunday ran a segment featuring a photographer/subject pair. We were asked if we'd like to be taped for a similar piece for the Montreal launch. We said yes, and the "whirlwind" was the prep and shooting of the segment. (We don't know exactly when the segment will air as yet; just that it will be on a Sunday—of course—sometime during the run of the exhibition in Montreal.)
So tomorrow is another whirlwind. In the morning we're off to the launch at the Place des Arts Esplanade; it's an invitation-only thing, complete with mayoral speeches and wine I can't drink, but at some point in the day the exhibit opens to the public. It's scheduled to run until September 28, and will continue touring Canada for two years.
This image is from a comic book series called Mage, and while it may not seem to have anything to do with my leukemia right now, well... keep reading.
Mage was an independent series created by Matt Wagner in the mid-1980s. I was an easy mark for it, because I've always loved stories that map ancient legends and figures to the modern day. In the 1990s follow-up series Mage Vol. 2: The Hero Defined, the cast expanded, including the character you see on the far left: Joe Phat, the modern-day incarnation of the trickster Coyote figure.
Anything who knows anything about independent comics of the era knows that Joe Phat was a black, dreadlocked version of his pal and fellow comics artist Joe Matt. But it took about two seconds to realize that despite Wagner's intentions, Joe Phat was, well, me. Absent the dreads, Coyote wore the same glasses I did. We had the same physical build. He shared an apartment in Montreal with his two cohorts, and his room looked an awful lot like mine. He was a talk-too-much, always-grinning trickster. And his power was to run at super-speed. He ran like I loved to run.
It's hard for a middle-class black kid to find a comics character they really relate to, but Coyote and I resonated on exactly the same frequency. There's even a scene in The Hero Defined which spoke directly to a very painful part of my life at the time I was reading it.
When a Coyote t-shirt became available, I couldn't afford it. I bought it anyway. When I wore it I felt unbeatable, like I could get out of any situation and come out on top, just using wits and speed. Knowing that I'd wear the thing out in no time at all if I wasn't careful, I tried to only wear it on special occasions, and I'm happy to say it survived pretty well even into the first few years of my son's life. (It also outlasted my ability to run. I damaged my knee in 2000, and I can't run flat-out anymore. I miss that a lot.) Eventually, though, the shirt gave up the ghost, and my attempts to replace it over the years have been futile.
Now we come more or less to the present.
Last week I was resting at home, enjoying my renewed mobility even if I was still a bit under the weather. My mom dropped by with a package from Tamu—we're always shuttling stuff back and forth—and handed me something I couldn't open until they got the camera so they could photograph my reaction. Of course, that set off alarm bells. I removed the item from the plastic bag. I lifted the cover. And I wasn't at all prepared for what I saw.
Sandwiched between two boards was an original drawing by Matt Wagner of me running, dressed as Coyote. (Click the image for a higher-resolution version.)
Four photos were taken of my reaction. In the first two I look surprised and happy, but you can't see what I'm looking at. The third photo, the one you see here, is is the transitional one. It was my last moment of composure before I started crying uncontrollably. Part of it was of course the drawing itself, and the thoughtful and unexpected gift. But what really started the waterworks was a detail that no one else could possibly have known about: Three weeks earlier, when I had the vision of racing against the leukemia to make the bone marrow transplant date, I was wearing exactly the clothes that Matt had drawn me in. I was Coyote, relying on pure speed (and maybe some last-second trickery) to beat the disease to the finish line.
I almost managed to pull myself together when my subconscious pointed out something I'd missed. Matt's drawing had one essential detail that I hadn't even thought of in my original vision: I was smiling as I was running.
As soon as that clicked, I completely lost it.
I've been meaning to write this post since August 27, the day after I got the picture. As usual, it was mostly composed in my head already; it was just a matter of sitting in front of a keyboard. But it was right around then that my blood pressure dropped, making me too weak to do much of anything. (In fact, I discovered that sitting up straight in a chair was tiring.) I've been getting lots of food and rest, but it's taken me about three days to tap this out, bit by bit. I fear that I've lost some of the feeling I was trying to get across, except for the fact that I can sometimes bawl like a baby.
In any case, profound thanks are due. To Tamu, for coming up with such a great idea for a present; to Matt Wagner, for truly listening to her while discussing her request, resulting in a letter-sized coloured-pencil drawing that I will always cherish; and to Karine Charlebois and Marc Mackay, who shepherded the drawing from Comic-Con in San Diego to here with such care. It's because of people like you, from relatives to friends to people I've never met, that I keep running.
August 23, 2008
Please note: the message title refers to the Art of Noise song (from the Paranoimia album), not the ZZ Top song. Though I indeed know how to use them.
First and most important: I don't know if it's the chemo, the painkillers, or the new massager, but my legs hurt a lot less. Make no mistake, they're not cured in any way. They're still shiny, which indicates it's a leukemia-related problem; and they're still tender and very hot to the touch. But the agony is gone, and that makes things far more manageable. Getting into or out of a chair or bed, and especially getting out of bed after an hour or two, causes a lot less pain, and is easier to deal with. I don't have to keep moving my legs to stave off pain. Just the mental stress level of pain management has decreased drastically. Meanwhile, Vicky ordered an picked up a pedal exerciser—meant for therapy and such—for under forty bucks after she pointed out that my plan of using my bicycle mount would still cause problems getting on and off the bike.
Another case of credit where it was due: when I was describing different aspects of my legs problems for the nth time in hospital, I mentioned that walking downstairs was a lot harder than walking up stairs. My dad's smartass comment: "So walk downstairs backwards." (He says now he was brainstorming, but I know his smartass voice.) My reaction at the time was "Hahahahawait— different muscle group." When I got home and started to struggle walking downstairs (even after the painkillers etc., it's more work) I turned around—and damned if it isn't even easier than walking upstairs.
August 22, 2008
Disclaimer: A lot of this message was written as painkillers were kicking in. I blame grammatical errors and any lack of clarity on them.
So, went down to the Ottawa Hospital yesterday. Did a bunch of blood tests (including HLA typing) to get my info into their system, and talked about the transplant itself. There was little I didn't know already, just from reading and talking (more on that in a bit). Things are still looking good with the donor, maybe not as much for me (infections and all), but I continue to work on getting into fighting shape. The transplant itself will most likely be the week of September 15 (the week of the Ottawa International Animation Festival—no irony there), and eight days earlier I'll have started my ultra-intense chemo to start the process. There will be more regular contact with the Ottawa folks in the coming weeks, including a sit-down in which we'll go over every aspect of the procedure and my containment, as I like to call it, in fine detail. Jokes were made about the hospital food. I grabbed a cream of chicken soup on the way out and pronounced it quite tasty.
I had meant to mention earlier this week that Jason, one of my AML buddies who found three compatible donors in April, had had his transplant on July 1, and we'd been playing telephone tag since July 29. We finally connected on Sunday, and we had a great time catching up, including a detailed blow-by-blow of when he felt like crap, how he felt like crap, and how long he felt like crap. But he was exuberant as ever, and it was great to finally connect with him. Unfortunately I had to pass on the news that our mutual AML buddy Terry had died.
Anyway, the reason I hadn't mentioned it is that lately I've been focusing on organizing certain things around the bedroom and office to make them easier to keep clean for my return post-transplant. And I've still been just tired enough that I'm napping just about every day. But since Tuesday there was a brand-new reason.
Back in June I reported on how my feet and shins had swollen to epic proportions, and how some diuresis (i.e., peeing it out) would do the job of dispelling the extra water I'd been retaining. Worked fine for my right, but not for my left, testing, not a clot, cellultitis, antibitotics, pain went away, keep feet elevated if not active, etc., etc., etc. Case closed over time.
Not so fast. On Monday morning I woke up and my right leg was almost but not quite as bad as my left; I could still close my sandal clasp easily, but it wasn't quite as roomy. I had a regular hospital checkup that day (not with my regular hematologist, as she's out of town), but the doctor said it was a normal leukemia thing. "Normal" as it "it's one of those things that can happen, though it doesn't happen to everyone."
Tuesday morning was an altogether different matter: the pain I had experienced in my left leg when I got up in the morning was now being experienced in my right—but the pain was far more agonizing and lasting longer. If I kept circulation flowing by moving my leg (or having a good massage) things would improve, but it was still a matter of constant pain management so long as I was awake. Vicky and I bore this out by walking around the block after breakfast on Tuesday. I used her umbrella as a walking stick, but by the time we'd halfway finished our circuit, I didn't need it as much. When we got home I asked my dad to bring over some of his collection of walking sticks so I could find one that would let me get support if I needed it while standing up straight.
The walking stick that worked best for me had actually been a present to my father when we were in Kenya in 1986. It's carved from wood, and quite striking with its design of an elephant supporting the ring I hold with my hand(s), which are in turn supported by two roaring lion's heads. Everyone stops to ask about it when they notice it. However, once we got to the Ottawa Hospital we noticed right away that it's not very good on hospital floors—it just slides too much. Much to our chagrin, my dad had a rubber tip fixed to the bottom before we left. It works better, but it doesn't look right.
On the way home, I called my hospital and told the doctor about the pain. He asked if I'd taken anything for it. I said yes, 30 mg of codeine, which took the edge off but also had me sleeping through most of the car ride to Ottawa. He said, That's not enough. I said, Tell me about it. He told me to up it to 60mg when I got home, then call him the next day to let him know how well it worked, and we'd take it from there.
When I got home I was thoroughly distracted by other things, and remembered a few hours later to take the upped dose with my evening meds. While I was catching up on e-mail a bit later, I noticed my legs were bothering me less. Shortly after, I fell asleep at the keyboard. Twice. It was around 7:30 when I finally finished what I was doing, went upstairs, and went to sleep for about five hours. And that's why I hate painkillers; the really good ones knock you out, so you can't actually move around and do stuff pain-free.
I had to get up in the middle of the night a few times to go to the bathroom as usual, and as usual (since Tuesday) the shift from supine to standing was not an enjoyable one. However, I did it myself, dealing with the pain mostly through breathing and muttering sarcastic comments under my breath. This morning, though, it was pure and utter agony. Vicky had gone to drop off Max to start his day of mad fun, and I discovered it was 33 steps from the bed to the toilet. I discovered this because I had to fight for each step, arguing and cursing the entire way. It's still true that if I keep walking things improve, but the very first hour or so of the day is the worst—and this time I was starting to black out just from having to deal with so much at the outset.
I eventually made my way back to bed, and while the pain didn't stop outright, lying down helped; I didn't need to close my eyes. When Vicky got home and I explained everything she had the brilliant idea of using this wooden massager on my legs, even on the tender spots. It hurt a little at times, but it was so worth it overall.
Called the hospital, and the doctor gave me a choice: he could prescribe a stronger painkiller, or I could come in in the next two hours—a bit of a challenge with traffic, finishing breakfast, and just moving slower.
Well, I did get there just in time, and he looked very closely at both legs while listening very closely to my history and checking out my file, including my most recent blood test results. His feeling was that, yes, this was the leukemia, and it was getting out of control. He prescribed two painkillers that I would get immediately as a subcutaneous injection and intravenously, with the rest of the doses to be taken at home orally. His third prescription was for yet another relatively mild form of chemotherapy; something that could be administered quickly—two large syringes of a blue, clear fluid that went straight into my catheter in about five minutes, from the nurse gloving up to disposing of the syringes—with minimal side effects, and the option of stopping treatment if I don't need anymore come Monday. That should hopefully attack the source, and like the Hydrea keep things under control until transplant time rolls around.
The painkillers, of course, made me a bit loopy. This time it was dizziness and drowsiness, though not excessive amounts of either. When I had my second dose later (via a tablet), I slept pretty well (I got home by the time I needed to), but the doorbell woke me up and my mind was a badly confused, slightly scared jumble for a while before things calmed down. However, even before the second dose we were easily able to determine that the painkillers—one a daily dose of a steroid, the other just to take as needed—did a good enough job of diminishing the pain. The shins and feet still hurt, but not enough to take so much out of me physically and mentally. That's good enough for me.
August 19, 2008
Music is a big part of my life, and one of the first things I did as I packed for the hospital last year was fill throw a couple of gigabytes of music onto my PSP. It didn't take long for favourite songs to emerge, based on mood or pain management. Here's a rough idea of my playlist necessities.
These are the songs I listen to when I have to focus past pain or extreme discomfort. They get my blood pumping, my adrenaline up, and sometimes just plain angry enough to deal. Most of these songs involve some form of protest (sometimes political, sometimes not), or at least an element of flipping the finger at somebody, somewhere.
- Almost anything by Michael Franti and Spearhead, but to really get me going it's "Rock the Nation," "Yell Fire," or the remix of "Bomb the World" with Sly and Robbie.
- Lo Fidelity Allstars: "Warming Up the Brain Farm" and "Battle Flag"
- Red Hot Chili Peppers: "The Power of Equality." "Can't Stop" isn't actually a fight song, but it's energetic and of course the title is appropriate.
- LL Cool J: "Mama Said Knock You Out" (the definitive "I'm not going to take this crap" song, and the source of my recent "Don't Call It a Comeback" title)
- Artists United Against Apartheid: Remember the feel-good "Sun City"? "Revolutionary Situation," off the same album, is the this-is-why-we-get-up-and-fight track.
- The Pop Will Eat Itself (PWEI): "Bulletproof," as the title implies, is a great "I'm invincible" song, but for a true fight song "Ich Bin Ein Auslander" has a hard-driving beat, and is a stark look at the alarming rise of the extreme right in Europe in the mid-'90s. Sample lyric: "And when they come to ethnically cleanse me/Will you speak out, will you defend me/Or laugh through a glass eye as they rape our lives/Trampled underfoot by the rise of the right." Whenever I listen I think about how this is still going on elsewhere, and still needs to be fought.
- Public Enemy: "Night of the Living Baseheads," "Rightstarter" and "Prophets of Rage." Can't touch 'em.
- Meat Beat Manifesto: "Acid Again." This is only a fight song in my mind; I choreographed a space battle scene to this song years ago.
- Geinoh Yamashirogumi: "Kaneda," the opening track from the movie Akira. (It's played during the motorcycle gangs' fight.) It's all drums and chanting, and it doesn't let you go.
- The Prodigy and PWEI: "Their Law." One of the few lyrics in the song is "F--k 'em, and their law." Clearly an appeal to disenfranchised or alienated youth, but damn you can dance to it.
- Consolidated: "Tool and Die," "Guerillas in the Mist," and "Crackhouse" are some of the most pointed works they ever did on inner-city problems. And, again, you can dance to them.
- Fishbone: "Fight the Youth." Another response to the mid-'90s rise of hate groups.
- Oasis: "F--kin' in the Bushes." Damn, those kids can rock hard.
- Gary Clail's Tackhead Sound System: "What's My Misssion Now?" Classic '80s British industrial, on the subject of America's military spending.
Songs I Listen to at Night
Again, these are the essentials. I notice they're mostly albums, rather than single tracks.
- David Sylvian: Weatherbox and Weatherbox Instrumental. Soothes even the most troubled soul.
- DJ Spooky: Celestial Mechanix: The Blue Series Mastermix. Two CDs worth of mixes that put me into a contemplative state.
- Miles Davis: Kind of Blue.
- Pop WIll Eat Itself: "X, Y and Zee," from the Cure for Sanity album. Upbeat, poppy, only slightly melancholy. Sample lyrics: "This is the time, the time of our lives/Escape in time for the all-time highs/Of love, lust, laughter that make us sweat/Let's simulate sensory amplification/This is PWEIzation/This is this, it's the living end/'Je t'aime!' 'Encore!' 'Je t'aime!'"
- Quincy Jones, Valerie Simpson vocals: "Bridge Over Troubled Water." This is the version I grew up listening to and is, so far as I'm concerned, the best one. One night in February my fever spiked so bad I spent hours clutching ice bags to my body. I listened to a lot of my fight music to focus past the intense cold, but when I played this song in the early morning I just started crying.
Honestly, though, the one song that always makes me stop what I'm doing comes from Santana's Supernatural: "Put Your Lights On." Aside from the fantastic instrumentation, Everlast's vocals are incredible. It came up randomly when I was alone one night in the hospital in January, and couldn't sleep. These lyrics in particular really spoke to me:
All you children
Leave your lights on
Better leave your lights on
'Cause there's a monster
Living under my bed
Whispering in my ear
There's an angel
With her hand on my head
She say I got nothing to fear
There's a darkness
Living deep in my soul
Still got a purpose to serve
So let your light shine
Deep into my home
God don't let me lose my nerve
Don't let me lose my nerve
August 16, 2008
So last night I decided to shower—my first deep cleansing since the pneumonia decked me—in an effort to work out some of the aches in my muscles before I went to bed. I've mentioned before that showers are a time for me to think, and this one was no different. I had a startling epiphany where I realized that my attitude started to take a downward turn after that whole gurney affair last month. In fact, I had the specific moment: It was when I thought that the gurney had beaten me.
Ever since that moment, I've been acting beaten. Vicky has commented more than once that my posture is more slumped; I've been speaking in a quieter voice; my posts have become increasingly negative.
Frak that noise, I decided. Nothing has ever beaten me down in the past, and nothing's going to beat me down now. I realized that every pain and discomfort I'm feeling now is nothing compared to other pains I've experienced over the years. Enough, already. Time to stand up straight again and face this leukemia down.
August 15, 2008
On Wednesday I went in for a followup, which of course means a blood test. My hemoglobins were still dropping, but I felt fine. I was given two options: get one unit of blood on Wednesday, then come back for another on Thursday or Friday, or come in on Friday and get both. Since it was approaching noon already—when everything in the oncology clinic slows down—and a transfusion, once it's started, takes about 105 minutes, I elected to come in on Friday. Besides, I felt great, right?
Wrong. By the time I got home, I was starting to feel fatigued. The next day was a bit worse, but in the afternoon, when I was alone at home and typing away on the computer, I felt myself starting to black out. I stumbled upstairs onto the living room couch, called Vicky—I could barely speak—and closed my eyes.
I eventually woke up and felt marginally better, but objectively I was a wreck, with my muscles aching and my head pounding. We called my hematologist (actually, Vicky did when I was semi-conscious) and when I spoke to her later she pointed out that I was probably anemic (which should have been obvious to me—all the signs were there) and that the headache and dizziness might be caused by the recent upping of the Hydrea, which we'd done to keep my crazy white blood count under control. My Hydrea dose was knocked down back down to its old level, and I stumbled through dinner, and eventually sleep.
This morning I woke up, muscles still aching and still damned tired, and forced myself to get out of bed so we could get to the hospital early. (The oncology clinic is always busy; five minutes can make all the difference between a ten-minute wait time and a two-hour wait time.) The strategy paid off; I got two units of blood in record time, with the new bag of blood switched out just as the first one ran out. I got in around 9:15, and was done pretty much at 1:00 on the dot, a new record.
(By the way, for those counting that's now blood transfusions #31 and #32, for a total of 44 transfusions overall.)
Usually after a blood transfusion I feel pretty peppy, but this time the difference wasn't as noticeable. I felt better, but still not particularly good; my muscles still ached, and I was still feeling tired. My blood pressure was low—something like 96/57—and my white blood count was still up there. I pretty much went straight home and straight to bed.
Some other news, though: while I was busy getting the red stuff, the Ottawa General Hospital left us a message at home. I'm going in for some preliminary testing next week, and the actual transplant date is starting to get a bit clearer: they're saying it'll be the second week of September. Right away, my hematologist picked up on the fact that I wasn't too enthusiastic. The plan, as you'll recall, was to get in the best shape possible so I'd be ready for the transplant. But right now I feel like the last few weeks have been piling up on me.
August 12, 2008
Just a few updates from the last five days.
On Friday morning my mother told me that my grandmother had died the night before. Like my grandfather last year, it was pneumonia that did her in. (See, I was right to be worried before.) She was 93, passed peacefully, and one of her granddaughters—arguably the one grandchild who spent more of her childhood with her than any other—was with her. Honestly, I can't think of a better way to go.
I have a lot of memories about my grandmother, but there are two that have stuck out in my mind since Friday. One: Her Scrabble skills were razor-sharp. It didn't matter if her opponents had more schooling, she would whup all comers. She was pretty formidable at Boggle, too. Two: No one in the world has ever made homemade chocolate-chip cookies as good as hers. Ever. Suggesting otherwise will earn you hostile glares—if I feel like letting you off that easy.
I spent enough time in Kingston, Jamaica as a kid that I consider it one of my three home cities (Montreal and New York are the others). With my grandmother's passing, the three family members I saw most often when I was there are gone. Going to Jamaica won't feel right without them there.
Saturday, of course, was awesome. Sunday was less so, but still pretty good. I was still a bit bummed about missing the SIGGRAPH conference, but several compatriots have been sending me updates (and a great personalized video!), so I don't feel too bad. I've also decided to attend in spirit with a series of photos.
When I went to get my shots yesterday I also had a blood test. My hemoglobins are down, but since I felt (and still feel) reasonably energetic, I elected not to receive a transfusion. My white blood count, however, has skyrocketed. Since the azacitidine shots often depress the white blood count, my hematologist took me off the Hydrea. But with these results, I've ended up going back on them.
The down side to going back on Hydrea is the effect on my mouth. It's not as harsh as my earlier chemotherapy regimens, but Hydrea does reduce some of the mucous in my mouth, making it a little more difficult to eat. Really, I just had to be careful. However, the azacitidine has the same side effect, and it's starting to kick in as well. Last night I gingerly but greedily enjoyed pork souvlaki with rice, vegetables and naan bread; this afternoon I couldn't eat a tuna sandwich with soft bread. It's back to soups and potages for me until things get better. There's also the fact that, as before, more foods just aren't tasting right. I have what should be a tasty glass of chocolate milk with me now, but I took a swig and it's actually kind of revolting.
(I should confess that I've been toying with the idea of pureeing a tuna casserole. After all, the one in the hospital wasn't bad, and I'm sure my casserole would be yummier. Still, it seems like sacrilege somehow.)
With all that said, today was my last trip to the hospital for azacitidine shots. Since last Monday I've received seven injections on each side of my abdomen. The needles are tiny and in the hands of a good nurse the shots don't really hurt, but after all the jabbing my abs are extremely tender. I'm glad this phase is over.
August 9, 2008
Whole books have been written on this subject, but today I nailed it in five steps:
Step 1: Watched my son's soccer practice.
Step 2: Made and ate a mean tuna-fish sammich.
Step 3: Spent almost an hour on the phone with my best bud.
Step 4: Successfully completed this mathematical equation: 1 sunny afternoon + 1 volume of Popgun + 1 comfy chair + 1 bowl containing a 2:1 ratio of Reese's Pieces to chocolate M&Ms + a half-pint of root beer + DJ Spooky's Celestial Mechanix: The Blue Series Mastermix for background music
Step 5: Nap.
So what if I woke up sweating ten minutes ago and my stomach still feels like a pincushion after a week of two daily abdominal injections? I honestly don't care.
August 4, 2008
While I was still in hospital on Thursday—in fact, in the middle of a conversation with my hematologist—I noticed a small bump on my right forearm. It looked kind of like a bug bite, but didn't really feel like one. I pointed it out to her and she said we'd keep an eye on it.
Saturday morning I woke up with a lump pretty much like the first one, only this time on my abdomen. This one was a bit different; it was tender like a spider bite, but the lump itself was harder. Two lumps in three days? While watching Max's soccer practice I got on the phone with the oncologist on call and made an appointment to come in the next day.
The entire time I was, of course, quietly freaking out. Having one form of cancer makes you more susceptible to others; hell, even cancer treatment can make you more susceptible. The suddenness of the lumps' appearance was bothering me, and I kept checking to see if others were showing up.
Sunday morning I was at the hospital, and the oncologist on call looked both the lumps over, pinching them, rolling them a bit between his fingers, and asking me a barrage of questions about when they appeared, how they felt, and so on. Then he disappeared and got on the phone with my hematologist. The verdict: they probably weren't life-threatening, but I should bump up my checkup from Wednesday to Monday.
And so this morning we went through my usual checkup routine. I got a blood test and a catheter dressing change in the oncology clinic. Then Vicky and I froze to death in the waiting area for my hematologist. (The clinic was unusually quiet, so I sped right through, which had us waiting longer for my hematologist.) When it was finally time, my hematologist also did a physical exam. When I sat back down she said, "Like I thought, it's the leukemia."
I didn't miss a beat. "How is it the leukemia?"
"Sometimes it 'leaks' from the blood and gets under the skin."
"So it's a tumour."
Dammit, dammit, dammit. Months ago, when I was looking and feeling great, she'd made the comment that I didn't "have rip-roaring leukemia." Now, with the transplant so close, I'd had three infections and now this? I visualized myself sprinting hard on a track, racing against the leukemia to beat it to the transplant date at the finish line.
Already prepared, my hematologist gave me the course of action. I was to start one of the chemotherapy treatments I was going to do before we met with the transplant specialist; an outpatient procedure where I'd get seven injections of Vidaza over nine days. Vidaza on its own wouldn't be as hard on my system as previous treatments—I'd keep my hair, have no mouth sores, and the potential for nausea would be far lower—which meant it wouldn't interfere with my transplant readiness, but it should slow the leukemia's spread. Because I'd already been cleared for the Vidaza, treatment started today; I went straight back up to the oncology clinic, waited through the noontime rush, and got two injections in the abdomen.
Interestingly, when I pointed out the abdominal bump, my nurse noticed a black dot right on top of it—a sign that it might just be some fluid trapped under there from my Lovenox injection last week. It so happened that my hematologist was there, and when she looked at it again she concurred, especially since it was more tender. "Do you mean to tell me I just spent thousands of dollars in treatment for nothing?" she joked. (This is why we like her.) She still felt the first lump appeared and behaved exactly like a tumour, and I may get a biopsy to be absolutely sure. But with the finish line so close, we're not taking any chances.
August 3, 2008
When you go into hospital, every new doctor you meet asks about your condition and does some kind of exam. I'm generally in favour of this; not every doctor asks exactly the same questions in the same way, and each one picks up on different words or comments you make, so everyone backs each other up. But I meet a lot of doctors on these occasions; at least one in emergency, and when I get to the ward there's the team of senior and junior residents, a med student, the doctor in rotation, and of course my hematologist at minimum. Sometimes they come alone, or in groups, and at least when they're in groups only one does the physical exam. Like I said, normally not a problem. But when your sinuses are in agony and each exam involves someone pressing their fingers or thumbs against them or tapping them, you just want to shout, "Enough already!"
So it turned out that what was plaguing me was sinusitis. Some bacteria had gotten in there and was making my life miserable. The antibiotics regimen was helping, but what was really needed was to drain the mucus and other crud from the sinuses and keep them clear so the antibiotics could work most effectively. That meant irrigating them on a regular basis—taking 5 mL of saline, squirting it up one nostril, and then letting it drain out the other. You have to tilt your head back as you squirt with reasonable force, and slowly rotate and eventually raise your head to guide the saline through the sinuses, then let it run out, snorting a bit at the end to release any gunk that was loosened. It's not pleasant; it feels a bit like standing on your hands at the bottom of a pool and deliberately letting water get in, and you have to alter your breathing a bit so you don't close everything off, but you don't let it drain uselessly down your throat either. I have to do this every three hours. For best results, that includes during the middle of the night.
Whenever I was able to focus a bit, I read and did puzzles to keep my mind off my discomforts. One book I read was Soon I Will Be Invincible, a story set in a world of superhereos and super-villains, told through the alternating narratives of the arch-villain and a rookie superhero. It's a fun and loving deconstruction of comics, but there's a part where the villain is relating the lab accident that gave him his powers. I read it the morning after a vicious late-night coughing fit, one where I was still in a half-dream state at the same time, which was too strange for words. The passage read: "I wanted to faint, leave my body. When you can't bear something but it goes on anyway, the person who survives isn't you anymore; you've changed and become someone else, a new person, the one who did bear it after all." I've been thinking a lot about that passage as it applies to my different experiences since my diagnosis.
I had to be given daily injections of Lovenox, a blood thinner. The injections were in the abdomen, which aren't as bothersome as I thought they'd be, but unlike earlier promises they didn't sting that much less than in the thigh. I broke one of my cardinal rules and made a joke about the name (pronouncing it "Love-nox" in a Barry White voice), which made the nurse laugh while the needle was still in. Not smart.
One morning I woke up and I finally felt like a human being again. Not a particularly energetic one, but human nonetheless. Like old times, I got up, put on a mask and gloves and did a tour of the floor. I decided to stop at the computer room to check my e-mail—I had closed an eBay sale during my previous hospital visit and wanted to reassure the buyer that I hadn't disappeared with his money—and of course the community computer wasn't working. I ran into an orderly who was just starting his first day and we chatted a bit. I welcomed him to the floor, and not for the first time reflected on how much the ward felt like home now.
I was eventually moved to a smaller private room, one with its own air treatment unit (99.97% HEPA, it said), a great view, and a George Jetson chair next to the bed. Later I walked the floor again and realized I'd stayed in 10 of the 20 rooms over the last eight months.
My hematologist and I talked about how drastically things had changed. My white blood count was stabilizing to normal levels and my neutrophils were okay, but they clearly weren't doing their job; I'd had three infections (cellulitis, pneumonia and sinusitis) in two months, the last two very close together. In earlier weeks we'd spoken to the transplant specialist in Ottawa, and my approximate transplant date had been moved from late July/early August to sometime in September because of logistical issues plus the fact that my leukemia was stable. The latter factor no longer being the case, my hematologist worked with them to move things up a little. My donor has been activated (i.e., notified and beginning further tests in preparation for the stem cell harvest), and I should be receiving my transplant at the beginning of September. Until then, I've got to keep from catching another infection, so she prepared a new drug regimen, built on top of the old one.
Early Friday afternoon I was finally discharged. I could walk on my own power, but with frequent rest stops. Vicky and I went to the pharmacy to pick up my next month's worth of medication:
- Allopurinol, to prevent gout and keep my kidneys clear (once a day)
- Ativan, if I need help sleeping at night
- Clavulin, an antibiotic (twice a day)
- Desmopressin, for my diabetes insipidus (twice a day)
- Hydrea, to keep my white blood count down to normal (twice a day)
- Magic mouthwash, to ease the discomfort in my mouth (the Hydrea has been stripping the mucus from my mouth over time, making eating harder; four times a day)
- Pantoloc, to help with my reflux (once a day)
- Saline, to continue irrigating my sinuses (every three hours)
- Vitamin D, as part of a med student's lab I volunteered for (twice a day)
It took an hour for the pharmacist to prepare everything.
August 2, 2008
After my 48-hour hospital stay two weeks ago, I was generally fine, though a little tired overall and with persistent nasal congestion. That changed just a few nights later. On Thursday the 24th, I was feeling pretty wiped out, which of course happens from time to time. But when I got into our new bed (we had ordered an adjustable bed because of my sleep issues, and it had arrived earlier in the day) I didn't really get out all that much until Sunday morning. During that time it got harder to even lift my head, and I was getting warmer, occasionally just over the borderline of being feverish. Speaking above a mumble was usually an effort. A constant headache and facial pain had me sporting cold compresses on my head and face, and bright light hurt my eyes. Worse, the nasal congestion meant I was sleeping with my mouth open, which meant I woke up with a dry and cracked mouth and a sore throat.
By Sunday morning, there was nothing for it. My fever got comfortable and settled in, and we knew it was time to go to emergency at the hospital. Vicky helped me slowly make my way to the car, and after we picked up my dad we were on our way. What follows isn't so much a narrative as a roughly chronological collection of experiences from after my arrival at the hospital.
One of my first thoughts when I realized emergency was inevitable was that I'd be on a gurney again—and of course, that was the case, though this time there were no pillows to be had. I was put in isolation again, just a few doors down from the room where I'd stayed my first night in emergency the last time. This room was comparatively spacious, with its own bathroom, a counter with a sink and stocked with supplies like compresses and gauze, and an examination table. When my mom came to stay with me at night, she somehow squeezed herself on the exam table—have I mentioned that I inherited my ability to sleep anywhere from her? Anyway, early the following morning my absolutely wonderful nurse managed to scrounge a clunky, old-school but full-sized hospital bed for me. When I rolled into it I thought I was in heaven, until she brought not one but two pillows. I fell into a blissful and very grateful slumber.
The day I was admitted my occasional coughing started to come just a little more frequently, along with a little chest pain. Of course, this prompted an EKG, and I had another visit from the tattooed nurse. (My eyes were pretty much closed the whole time, as they were most of the time I was in emergency; I only know it was the same guy because I kind of recognized his voice, and asked my mom about the tats after he was gone.) It also prompted later chest and sinus X-ray sessions.
The morning after I was admitted I had been started on antibiotics and I was feeling a little bit better, but just barely. At one point as I was leaving the bathroom I started coughing violently, more forcefully than I'd ever coughed in my entire life. My body shook and the world tilted, forcing me to hold on to the walls for support; my entire throat felt like it was expanding and contracting violently with each breath drawn and subsequent coughing fit; my vision blurred, distorted, and shook just as awfully; my eyes felt like they were ready to burst from my sockets; I spat up sputum, thick and white. And I just couldn't stop. When it was over I stood still braced to the walls, the inside of my glasses covered in tears, trying to figure out what had hit me. I later discovered that this was my body's way of expelling foreign matter from the lungs.
Over the next few days I experienced increasingly worse versions of that episode; my last one, in the middle of the night, had me crying and begging for it to just stop. By then, the entire circumference of my throat, from my jaw to just below my Adam's apple, was in pain, far worse than even the worst bronchitis I'd ever had.
I only spent one night in emergency; I was soon moved up to my old ward, as some space had become available. Because of some logistical quirk and the fact that I had to remain in isolation, I ended up alone in a room intended for four beds. We took to calling it the executive suite.
I got my 29th and 30th blood transfusions, which puts me at 42 transfusions overall. I really need to make a counter or something for the website.
July 22, 2008
Before I can fully explain Tuesday night at the hospital, I have to tell you a few things.
First, something that a few people reading this know: I have long had the ability to sleep—easily and completely—anywhere. And I mean anywhere. In the past I've slept across three rickety chairs barely suitable for sitting, in a rickety bus travelling on a road that even pothole-hardened Montrealers would find daunting, and on an abandoned tennis court in the Adirondacks. (Last year I even fell asleep standing up, but I think those circumstances were a little extreme.) Honestly, the only person who can match me in this area is my mother. It's a great asset for travelling.
Second, as others reading this can attest, I can sleep through anything. Once I'm asleep, I'm asleep, and no amount of sirens, shouting, or room-shaking loud music can wake me. This is why that whole incident back in February with the disoriented hospital roomie who was shouting at the top of his lungs for help didn't affect me at all.
Third, sleep itself is more difficult these days. Between my chest catheter (it's no fun rolling onto the clamps' pointier ends) and my injured shoulder, it's hard to find a comfortable position to sleep in—never mind the need to keep my fat left foot elevated, on top of that. Add to that my night sweats, which are getting worse along with my body's decreasing ability to manage its temperature, and, well, you get the picture.
All of these things came to a head on Tuesday night. When we talking about that night, the first thing my mother mentions is the poor disoriented woman who was screaming for two hours. That was the least of my concerns, as I was able to sleep through a fair bit of it. The problem was getting comfortable enough to get to sleep and stay asleep. Not only was I sleeping on a narrow gurney, it was cold in emergency (at least to me), which made it hard to balance my need for cover with my need for ventilation to keep the sweats at bay. Being attached to an IV pump and the newly minted upper back pain made it worse. When I could get to sleep, I couldn't stay asleep. When I came back from the bathroom in the middle of the night at one point, I thought, "That damn gurney might actually have beaten me." Late I woke up gasping after a particularly bad attack of the night sweats, changed my clothes, and came to the realization that i was actually afraid to try to go back to sleep.
I eventually did, and despite one minor sweat incident, managed to sleep in two two-hour chunks. But although I felt better in the morning (good enough to navigate the hallways and elevators and pay my hematologist a visit), I didn't really have a good night's sleep and tried to avoid lying in the gurney. When I got ready for bed at home later that night, I actually said, "Thank God, a bed"—something I have never uttered in my entire life.
It would be nice if this story had a happy ending. It kind of does, as I was released with five days' worth of look-at-the-size-of-those-things antibiotic tablets, and the pain in my back went away. But sleep is still increasingly problematic. It has nothing to do with the hospital stay, but it's a nightly reminder. And that's just no fun.
July 20, 2008
Monday night in emergency is something of a blur for me, because I didn't get a good night's sleep at all. It was very cool in the room, so I was fidgeting as I alternated between being too hot and too cold. Also, I was constantly being visited: I had a blood culture taken when my fever spiked at 39 degrees, I was visited by my hematologist before she left work as well as my old CEGEP buddy when his shift ended (at midnight!), nurses came in to get my vitals every few hours as well as an early-morning blood test, a nurse with an awesome tattoo (as far as I could see—I was too tired to ask him about them) came in to do an EKG, and one of the doctors I knew from my last stay, who happened to be doing her rotation in emergency, stopped by. Factor in the late arrival of my desmopressin, which had me making a few extra visits to the bathroom, and you can see why everything was a little messed up.
I did get an hour or two of sleep in at the end, and when my eyes opened I realized I didn't feel quite as out of it as I had on Monday. Then I sat up quickly and felt a sharp pain in my upper back that sent me right back down. It seemed I had slept in a funny position, and the sudden shift didn't help. Ow.
Gingerly, I got myself into a sitting position and found that I was actually able to sit up and read a magazine, something I was totally incapable of the previous day.
Vicky came by to relieve my mom of her shift, and brought me some fresh clothes. We waited to find out what was happening with me, and discovered that they were waiting to admit me, if only they could find a free bed upstairs. Eventually, once it was determined that I wasn't neutropenic, I was moved to a different unit within emergency (the green unit) which was smaller and far quieter overall, but didn't have any separate rooms—so I got to hear the conversations and occasional plaintive cries during those few times I was awake. Eventually my mother came back to relieve Vicky and, after a few puzzles and a short walk, I settled in for the night's sleep.
July 16, 2008
So here we are, on Wednesday afternoon. A few hours ago, I finally got home from what I had hoped would be a short hospital visit.
What happened? Well, I arrived at the hospital Monday morning feeling weak, after having spent all of Sunday in bed, pretty much too weak to move and occasionally drifting into a mild fever. Vicky had spoken to the oncologist on call (who happened to be my hematologist) and she said if I didn't improve, to come in the following day.
So I did. My nose was stuffed, my throat was sore, my head ached, my chest hurt and although I could walk or talk neither was something I wanted to do for too long. Vicky, my parents and I got to the hospital and I headed straight upstairs for a vitals check and blood test, with a note that I should get a blood culture if I had a fever.
I should mention here that blood cultures are standard for fevers; if you saw that picture of me in the Gazette in March, I was having one done at the time. Blood cultures are blood tests used to check what, if any, bugs have gotten into your system. Just in case the fever is brought on by an infection in the chest catheter, there are three groups of blood draws. One from the each line of the catheter, and one from the arm. I hate blood cultures for two reasons: (a) it takes days to get the results, so you're on pins and needles wondering what you've got, and (b) I hate getting stuck in the arm.
So anyway, I didn't have a fever, but I muttered that I knew I was gonna get stuck sooner or later. After seeing my hematologist (who noted that some of my sinusoidal area was ever so slightly tender), I was directed to get a chest X-ray and a sinus X-ray. Vicky and I went downstairs, registered, and sat in the waiting room.
And then suddenly, everything went weird. My balance went a little off, and it looked like I was seeing the world through a mass of light purple blobs. It slowly started to get worse, and I mumbled something as I slowly started to list to starboard. Vicky asked if I was okay and I mumbled something else and then she asked if I needed a stretcher. I sat up, and realized I couldn't stay vertical for very long. I said yes, propped my head in my hands, and waited.
A gurney was brought in short order, and I managed to walk the three or four steps needed before sitting and then quickly lying down.
What I didn't realize then was that I'd be in a gurney for most of the next 48 hours.
It came to my turn for the chest X-rays, so I was wheeled in and felt good enough to stand for them. I lay back down in the gurney and was wheeled over to the room for sinus X-rays. While waiting for the technician, Vicky and I sat on the gurney and joked about the fact that the door marked "Always Leave This Door Closed" was usually opened, with the room used as a shortcut between two parallel hallways. I felt okay (well, no worse than a few hours earlier) when I sat down for the first X-ray, but in the few seconds before the next everything went wonky again and I had a quick lie-down while I caught my breath. After the second X-ray, I got back in the gurney and pretty much stayed there until I was wheeled back upstairs and climbed into another gurney and waited for my doctor to show up and look at the films.
When we had left the house that morning, my mother had mentioned that I might consider the possibility that I'd have to be admitted. I did, but I didn't really want to think about it. I figured I either had a cold or my white blood count had finally become elevated enough to be problematic. It turned out neither was the case. The X-ray technician's conclusion was mild pneumonia, and the very first thing that went through my mind was that it was pneumonia that had killed my grandfather exactly fourteen months earlier.
The hope was that I would be admitted to my old ward, but they were full to the brim so I was sent to emergency until space could be found, preferably in isolation since the blood results hadn't come in yet and there was suspicion I might be neutropenic. I ended up in the red unit (emergency has three units: red, green and blue), in room 12: as it turns out, a psychiatric room. Psychiatric as in the bed already in the room had straps on it.
By now it was approaching 5:00, and my mother elected to stay overnight with me. It turned out that my E.R. doctor was none other than an old classmate from my CEGEP days (he clearly stayed in sciences, unlike me). I ate dinner when it arrived, ran through another blood test and some more Q&As, tried unsuccessfully to read a bit of my magazine (I was too weak to hold it up and the room was too cold for my hands to remain exposed anyway), and called it a night.
July 14, 2008
Was going to take a moment out to write yesterday about my two blood transfusions on Friday (#27 and #28, for a total of forty transfusions overall), and how I coped with the boredom by watching four episodes of Avatar: The Last Airbender and catching up on my Coverville music podcasts. (Best cover of the lot: Jimi Hendrix's All Along the Watchtower. Most, um, odd: Paul Anka's Eye of the Tiger.) It was surprising that I needed the tranfusions at all, as I felt quite energetic. But numbers don't lie, and my hemogloblins were low.
Anyway, the reason I didn't write about this yesterday is that I spent all day in bed. I woke up with a sore throat, a stuffy nose, a mild fever, and the sensation of my brain loosely floating in my skull and occasionally banging against the sides. So now we're off to the hospital, and I get to miss the last two films I wanted to see at the Fantasia film festival. I'm not sure which irks me more.
July 3, 2008
I've been cagey ever since the day I got the news that I might have a matching donor, and I remained cagey (although slightly less so) when that donor was confirmed. The reason is simple; there are any number of reasons a donor could back out before they begin the procedure. It doesn't necessarily have to do with fear or callousness; it could be for medical reasons (if something turns up that appears to make the procedure unsafe for the donor, it's called off), or for pragmatic reasons (I recently read on a potential donor's blog about how, as a single mother, the extended hospital stay her donor centre required for the filgrastim injections wouldn't have worked out; fortunately, there were two other matching donors).
The fear that the donor might back out is heightened by the fact that as a black recipient, I have a much lower chance of finding another donor who can act as a backup—it's hard enough as it is to find one matching donor. And without a Plan B, what do you do when Plan A fails?
This is not a purely academic concern. You might remember back in May when Tamu wrote about Eunique Darby, a Syracuse teen who needed a bone marrow match and was fortunate enough to find one the day before the National Marrow Donor Program's annual Thanks Mom event. What I discovered a few weeks ago—and didn't report in the vain hope that good news would be around the corner—was that Eunique's donor had backed out. So rather than the feelings of relief and preparation for the transplant procedure, Eunique and her family have had to go back to square one.
I was unaware that the family had planned for a drive as part of the Juneteenth celebrations, but, as always, there are many ways to register. No matter where you are in the world, check out our list of registries for more information on registering in your area. Eunique needs a Plan B. For all I know, I might need one, too.
June 29, 2008
On Wednesday it was noted that my hemoglobins were a bit low, so on Thursday I had to get two blood transfusions (my 25th and 26th, for those keeping count; my 37th and 38th overall). As I've mentioned before, the whole procedure is actually quite boring. This one was more so because (a) the clinic was completely full, and (b) there had been a mix-up with my cross-match, which meant it had to be looked for, determined to be missing, and then redone. Even though I got there at the respectable hour of 9:00 a.m., I didn't leave until 5:00 p.m.—a new record.
The time was passed by reading two Invincible trade paperbacks, watching two episodes each of Battlestar Galactica and How I Met Your Mother, reading a few articles in Interactions (an Association for Computing Machinery publication on human-computer interaction, or HCI), and listening to a Studio 360 podcast. Oh, and napping as best as I could.
It really is a lot of effort to do nothing all day. I went home and ended up falling asleep early.
Anyway, earlier in the week we loaded up the car with all of my immediate family (except my sister, who was at work) and drove down to Ottawa to consult with transplant specialists to get more information and decide which way to go in terms of my transplant. My original thinking had been to undergo a fourth chemotherapy treatment that would use different drugs in the hope that it just might put me into remission, as bone marrow transplants have a better chance of success if the patient is remission.
However, after speaking at length with the doctor, it seems that this isn't the best way to go. It's felt that these chemo drugs won't have a great chance of getting me into remission, a sentiment shared by several of the hematologists at the hospital (including my doctor) and myself. I already knew that, but was willing to go for the long shot. The specialist's experience, however, suggests that it would be better to get the transplant while I'm in the best shape possible—that is, as healthy as can be aside from the leukemia—rather than ravage my insides in the hopes of getting into remission.
What it comes down to is that any choice I make is a risky one; I just had to choose which path is, in the long run, the least risky. After thinking about it for a little while, I decided to go for the transplant as soon as possible, without being in remission. We haven't sorted out all the details yet, but assuming my schedule, the Ottawa Hospital's schedule and the donor's schedule all sync up, I should be undergoing the transplant procedure in late July or early August. I'll be spending the weeks leading up to that preparing in a variety of ways (more on that later) and trying to get myself in the best shape possible, through a careful combination of diet, rest and exercise. I'm also hoping to enjoy a bit of the annual Fantasia film festival, especially as it's probably the last film festival I'll be able to attend for 2008.
June 22, 2008
This is a bit convoluted, but it's the only way to explain the last few weeks, and what's to come. Please bear with me.
Four weeks ago, my medical life was relatively simple. I only had to take three or four pills a day: one pantoprazole tablet, which helps keep my reflux in check (I developed the reflux problem during my third round of chemo), and three pills of desmopressin per day, which moderates my diabetes insipidus (i.e., it keeps me from running to the bathroom twice an hour).
A week after that, things changed a little. We'd confirmed the donor, and were going to figure out the next steps soon. However, I'd also been retaining water, and my whole body was a bit bloated. My doctor said it was probably due to the desmopression, so she recommended diuresis to solve the problem. That meant going off the desmopressin and basically peeing the excess water out.
A week after that, the water retention problem had mostly gone away, though I was experiencing some of the constant thirst I'd had back in December, and of course I was running to the bathroom a lot. Meanwhile, my doctor noticed my white blood count was elevated, and said we'd want to get that under control before we started any new chemo.
Oh yes, about that chemo. This fourth go-round would use two completely different drugs that would attack the leukemic cells differently, and hopefully put me into remission. There is, of course, no guarantee, but my feeling was that since a transplant while in remission has a much greater chance of long-term success, it was worth a shot. So I slowly started taking desmopressin again to regulate the peeing, and was prescribed Hydrea to help keep my white blood count in check (it was elevated) in preparation for the chemo. I was also prescribed my old friend, Allopurinol, which counteracts excess uric acid.
Two weeks ago, I noticed that while both my feet were still kind of swollen, the left one was more so. And it was a bit less comfortable. Still, it wasn't drastic. I just kept elevating my feet, and taking minimal desmopressin—just enough to keep my sleep from being interrupted at night.
Eventually my right foot returned almost to normal, while my left foot seemed to be expanding. Furthermore, what started as a minor tingling in my shins seemed to be becoming more problematic—standing up meant a sudden pain in near my knee that slowly moved toward my ankles, almost like it was flowing. It made it hard to walk at first, though massaging my foot and walking made it easier. Oh, and the area around my calf was tender.
During my last checkup, my doctor mentioned that the Ottawa Hospital is one of the places that performs transplants on people who aren't in remission. We thought that was wonderfully convenient, as Ottawa is just two hours away and of course we'd still be under the Canadian healthcare system. However, after she looked at my foot and I explained my pains, she ordered an ultrasound for the next day, just to make sure it wasn't deep-vein thrombosis (DVT), essentially a clot that was blocking circulation. Just as a precaution, I was injected with a blood thinner. (For some reason, they couldn't use my chest catheter. I took the shot in the stomach, which hurts a lot less than you'd think.) Oh, and since my white blood count went up by 50% (!!!) my Hydrea dose was upped by 150%.
The next day was the ultrasound. Guess what: no clot! After a bit more examination, my perplexed doctor figured it might be cellulitis (no relation to cellulite, although my foot—then extremely and painfully fat—might have suggested otherwise). So for that I was prescribed Duracif, an antibiotic.
So here's my new daily drug routine:
- 1/2 an hour before breakfast: 1 pantaprazole tablet, five Hydrea capsules, and 1 desmopressin tablet (sometimes half a tablet, depending)
- at breakfast: 1 allopurinol tablet, 2 Duracif capsules
- at dinner, 2 Duracif capsules
- before bed, 1 desmopressin tablet
What fun! At least my foot is gradually deflating, and the pain has diminished considerably.
Anyway, the day after the ultrasound we heard from the transplant specialist in Ottawa. Seems he has some concerns about my forthcoming chemo treatment; he feels that those specific drugs, should they not put me in remission, are likely to cause complications on a transplant.
This poses something of a dilemma. The best chance of a successful transplant (one that cures the leukemia and the monosomy 7, but also one that I survive) is one that is performed while I'm in remission. But of course, the very reason I need the transplant—the monosomy 7—makes it hard for me to get in remission. The chemotherapy treatment we've been considering has a slim shot at succeeding, but as I said before, I'd been thinking that I'd rather take the chance and hopefully get a shot at getting in remission. However, now, as I understand it, undergoing this chemo and not getting in remission will actually put be more at risk compared to getting a remissionless transplant—however, getting a transplant without being in remission is already considerably riskier.
Tomorrow we meet with the doctor(s) in Ottawa to get more details and discuss options and probabilities. And then I distill all this knowledge and make the most important decision I've ever had to make it my life.
I hope this explains why, when people congratulate me about finding a donor, I say that things are far from over.
June 19, 2008
A few hours ago I was sitting in a radio studio for Université de Québec à Montreal's CHOQ-FM, where I was a guest on their Les Contes à Rendre spoken-word program. My friend Yasmin Hudsmith invited me to tell a story related to my cancer, and I ended up throwing out my first two efforts (a light-hearted look at the weeks leading up to my diagnosis and a more somber reflection on mortality and the people left behind) and quickly wrote the one I ended up using on the air, a tribute to one of my fallen cancer buddies.
I'm still in the process of editing the audio for the permanent Heal Emru archives, but I thought I should point you to the recording of the original broadcast in its entirety. If you understand French (I had the only spoken English segment), the whole hour is worth a listen. You can find today's airing at http://www.choq.fm/archives-contesarendre-19069-0.html#archives; either download the MP3 by clicking the really tiny "Téléchargement" link above the mass of text, or listen online by clicking the small play icon slightly above it. I start talking about 5 minutes in.
Update: You can now listen to the clip directly from Heal Emru by clicking here.
June 15, 2008
It all started a month ago—on May 13, to be exact.
My mother and I had gone to the Maisonneuve-Rosemont hospital—where I would most likely get a transplant if I found a donor, and the place where quite a bit of research in bone marrow stem cell transplants takes place—to meet with a doctor to discuss some questions we had. Questions such as, what if I had to resort to a haplocompatible (half-matching) donor? And what if I couldn't get into remission?
We met first with one doctor, who we filled in on details about my experience so far. After a short wait, he reappeared with his colleague, and before he addressed our questions he went over some other details about my case, and almost incidentally mentioned that a potential donor had been found.
"Wait a minute," you're asking. "That far back? Why didn't you say anything?" The key is in that one word: potential. Finding a potential donor means everything has lined up in terms of HLA typing so far, but further tests need to be done to determine complete compatibility and suitability. (Just a brief explanation about compatibility: Only the first six HLA markers are recorded when someone registers to be a donor. The remaining four markers need to be verified as matches as well.)
I used to joke that so far as I'm concerned, all donors are potential until I actually have stem cells being pumped into my body. There's some truth to that, as there are any number of reasons the donor wouldn't have panned out. It could have turned out they didn't match all ten markers. Further testing could have revealed that they had some disease they didn't admit to or didn't know about. Or they simply could have changed their mind about donating. This is why we didn't want people to stop the search—because nothing was guaranteed.
On June 4, we got better news. The person turned out to be a perfect match. Tamu wrote a press release, and within hours we were deluged by congratulatory phone calls and e-mail.
In a perfect world, the next few steps would be easy: I'd get into remission and undergo the transplant. Unfortunately, we don't live in a perfect world, as I've been having trouble getting into remission in the first place. Starting next week, I'll be undergoing a fourth chemotherapy regimen, one that targets the leukemic cells in a different way than the previous three treatments. (A nice side benefit: I can do these treatments as an outpatient, so no lengthy hospital stays just yet.) If I'm lucky, this new method of attack will put me in remission and we'll start the transplant procedure—assuming, of course, the donor doesn't back out.
But what if I'm unlucky? This isn't an idle question, but a distinct possibility. The monosomy 7 that necessitates the transplant makes it harder for me to get and/or stay in remission. So this is where things get interesting. If I'm not in remission, then a transplant becomes a far riskier procedure; the stats I've heard so far put the success rate at 1 in 4, tops. Moreover, the folks at Maisonneuve-Rosemont don't do transplants on patients who aren't in remission, which would mean I'd have to travel out of province for treatment.
Finding a donor is great, but the adventure's not over yet. Not by a long shot.
May 26, 2008
I forgot to mention that last Thursday I received two more units of blood, bringing my blood transfusion count to 24 and my total transfusion count to 36. (I seem to be keeping a 2:1 ratio blood transfusions to platelet transfusions.)
The nice thing about blood transfusions is that afterwards I feel really energized. Otherwise they're incredibly unremarkable. This is especially true with a chest catheter, because there's no need to stick an IV in my arm; just plug and play. But what they lack in discomfort they make up with tedium. Here's how it plays out.
First is the cross match; a vial of blood is taken, and brought to the lab where it's tested against the units of blood meant to be used for the transfusion. (While they already have my blood type on file, the cross match is to determine compatibility against the units' antigens.) So that takes a little while. Then my blood pressure and temperature are taken, and if everything is good we start the procedure... which doesn't involve blood just as yet, but rather a saline drip.
When the first unit of blood is ready—each transfusion I've had to date has involved two units—it's added to the IV pump, which mixes it with the saline drip. Then it's just a matter of sitting and waiting, as it takes about 105 minutes to get one unit of blood into me. I usually spend the time reading, doing puzzles, writing, playing sudoku or sleeping—whatever's needed to pass the time. When I'm actually in hospital, it's no different from anything else because I always have the pump with me anyway. When I'm an outpatient, then I'm more or less confined to my chair, because there's nowhere else to go.
When the unit's done, the remaining blood is flushed from the tubes (and into me) with the saline, and I wait for the nurse to get to me. (On Thursday, the first unit ran out right in the middle of lunch hour, when the number of nurses on the floor drops to two. So I had to wait a little longer than usual.) Then she checks my temperature and blood pressure again, and if necessary we repeat the whole thing with another unit of blood, which we usually have to wait for.
Like I said, no pain, just tedium. Last week I got in around 10:00 and left around 3:00.
May 18, 2008
No, I didn't get on a big boat. Earlier today I spent a few minutes as a guest on community radio station WMNF 88.5 FM's show Caribbean Cruise, speaking about the need for donors in general, and Afro-Caribbean donors in particular. I've posted the audio on the website here.
May 12, 2008
I've been meaning to write an update for the last two weeks, but I haven't really had much chance to sit still. So, with zero ado, here's the news.
We walked into my hematologist's office for my regular weekly checkup on the 30th, and she gave us the bad news: the previous week's blood smear revealed enough blast cells to make it clear that I wasn't in remission. (Or, possibly, that I was in remission for a very short while. Those cells weren't always there.)
April 23, 2008
So it turns out that writing is therapeutic, just in a different way than I thought. Shortly after writing about my newly painful experience with the sutures, I remembered that two of the questions I would get asked every few days in hospital were "Any pain around the Broviac?" and "Any redness around the line?" (Broviac is the brand name of my catheter.) The act of writing the message made me realize that—duh!—it hurt and it was red.
So it was back to the hospital the following morning, hoping I didn't have some kind of infection. After a few pressure tests ("Does it hurt when I press here?" "No." "Does it hurt when I press here?" "No." "Does it hurt when I press—" "OW!" "Okay.") the dressing was carefully peeled back and we got a good look at the entry point. It turned out that all the sutures had worked themselves out before; what was bugging me was crusty dried skin, some of which had broken off and was irritating the skin. (This goes back to the whole thing about not being able to properly clean the area around the catheter.) The area was cleaned, and the relief was almost instant. The new dressing was applied, the redness has diminished (though not entirely), and everything's cool.
April 21, 2008
I went to the hospital today for a quick blood test ("bloods" for short). Since they let me out early and everything, they want to keep an eye on the bloods to keep an eye on my neutrophils count, white blood count, hemoglobins and platelets. When I left on Friday my neutrophils were rising slowly; my white blood count was rising nicely; my hemoglobins were okay; and my platelets were low enough that they needed to be topped off, but nothing critical.
Since it's Passover much of the hospital is a ghost town. I stopped by 7NW (my ward; that's "seven northwest") to say hi to the gang, and checked out my labs after they'd hit the computer system. The only thing I really cared about was my neutrophils count—I'd like to stop wearing masks when I go to the store, thank you—and they're only at 0.4. To frame that properly, I'd usually be sent home only once I hit 0.5, would be considered mildly neutropenic at 1.0, and non-neutropenic at 1.2.
Anyway, after I had my bloods done I had my chest catheter dressing changed, because the dressing was starting to peel already. This has happened the last few times it's been changed; I suspect it's because I'm sweating more with the warmer weather, increased physical activity and recent recurrence of the night sweats.
While that was being done, the nurse working on me removed some of the sutures from my lines. When the catheter is installed, it's pretty quick surgery, but it's still surgery. That means sutures to close the hole around the tube as best as possible until the skin heals. I didn't think about sutures when I first got the catheter in—who would?—and when the gauze was finally removed I noticed what looked like wires sticking out of my chest. That is, in fact, what they were; these sutures appear to be fine stainless steel. Parts of them were eventually cut away during regular maintenance (aside from changing the dressing, the lines also get flushed to clear away blood clots and other buildup, and the claves at the end get changed), but the rest are still inside—think of snipping the threads that hold a button in place on your shirt from only on side.
The sutures that are inside gradually work themselves out of the body. I haven't mentioned it until now because it's a painless, dull process. Every so often I'd look down and notice that the sutures had come out a little more, wrapped around the catheter tubing. When they got long and annoying, they were trimmed.
It took four months, but the first bunch of sutures finally came out in their entirety today. Before my new dressing was placed, the nurse carefully removed them from the tubing, threw them away and cleaned the tubing. I looked down and noticed other sutures were starting to work their way out.
Now, normally when I get my dressing changed it feels uncomfortable for a few hours. When the old dressing is removed the skin is cleaned with Stanhexidine (chlorhexidine gluconate, 2%) antibacterial solution, which is cold, and air-dried. The new dressing is placed, usually a different way from the old one, and the lines are arranged differently on my chest. (Each nurse has a different style, it also lets the skin breathe and, I guess, keeps the lines from settling into one shape.) So while my nerve endings get used to a new arrangement for another week, it sometimes itches or tingles until everything settles in.
Today, I noticed it was actually feeling kind of uncomfortable—and, more alarmingly, localized. When it started to get really irritating I realized the pain was right at the tube's point of entry, which is the prime spot for any kind of infection. I was starting to get antsy about that possibility when I noticed that the new sutures had actually come out further. Vicky noticed that the spot just to the side of the entry point was red (how she spotted that through the dressing from a distance, I'll never know), and when I touched it I could feel the threads through the skin.
What appears to be happening is that these sutures are working themselves out at a faster rate—I never would have noticed such a difference in a matter of hours before—and as a result it's irritating my skin. So now there's a sharp little pain in my chest every so often as they do their little mambo. I'll have to make sure they don't poke through the dressing, too. Fun.
April 20, 2008
I was talking to one of my neighbours this evening—I haven't seen her in, what, five months?—and she said that it must be nice to be home and getting back into my old routines. Which I thought was funny, because I'd already decided that today I was going to write about one of my favourite routines that's changed since my diagnosis, and will stay changed for quite some time.
I love being covered in water. Invigorating showers that stimulate the senses, languorous baths with a glass of rum and Miles Davis on the stereo, laps in the pool—except for being rained on, being submerged is one of my favourite experiences, and one I'm happy to enjoy every day. You can tune a shower to your mood, say, with a quick, warm shower to clear the cobwebs in the morning with a short burst of cold water at the end for an invigorating snap when you've got a full day ahead, or a cool stream after a long bike ride. Since I work at home I usually shower in the afternoon to re-energize myself and think through things without any distractions. (In fact, it was during just such a shower that I conceived of Frames Per Second and had my first encounter with tachycardia.)
April 18, 2008
Found out yesterday that I'd be heading home today, but didn't want to say anything for fear of jinxing it. At the time of this decision I was still below the usual neutrophils threshold (I'm at 0.2, previously I was released when I hit 0.5), but it was felt that with gastroenteritis still going around—there was a new case the day before—I wasn't any worse off at home than here, so long as I had my usual battery of antibiotics, antivirals and antifungals. I also have to come in for a blood test on Monday so they can make sure the neutrophil levels are progressing.
There was just one moment when I thought I might not get to come home today; last night I had one of my occasional incidences of tachycardia, where my heart starts beating hard and fast for a while, then settles down. The first and most intense episode I ever had was in 1991 (coincidentally, just a few minutes after I conceived of Frames Per Second); since then it's been something that happens every once in a while then goes away in two or three minutes, max. Last night, while I was talking to one of the nurses (mostly both of us saying, "Yay! Going home!") I had another episode, but this one lasted longer—I'd guess it was five minutes before I realized it was still going on—and I started to break out in a sweat. I mentioned it to the nurse, and we checked my pulse on the machine: it read 192 beats per minute, a measurement neither of us believed until she confirmed it manually. She ran out, called the resident on call, and set me up for an EKG—but by the time the last sensor sticker was on me it was over, and the EKG just registered a normal heartbeat. (This is why I haven't bothered bringing this up with a doctor since, oh, 1992.)
Anyway, my fear was that I'd be kept here for observation, when I knew there'd be nothing to observe. It turns out the resident agreed (especially when I told her how long I've been experiencing these episodes), and I am indeed heading home in just a few hours. Since my platelets are getting kinda low and I won't be in until Monday, they're transfusing me just to top me off (12th platelet transfusion, 34th overall), but I'm only getting a half-dose of Benadryl. No more weirdness or grogginess, please and thank you.
April 14, 2008
Joni Mitchell was right—you don't know what you've got till it's gone. For a few days I was wondering why it seemed I as constantly getting bits of dust in my eye. Vicky was the first to notice: my eyelashes have almost completely disappeared. Closer inspection also revealed that my eyebrows were thinning. In fact, I've only just noticed that my hair has thinned out all over my body. (By comparison, during the first chemo most of my body was just fine—as evidenced by how much it stung to pull medical tape off my chest every day.)
Again, this is better than some of the other possible side effects. Remember how I mentioned one person who was temporarily blinded by the cytarabine? I neglected to mention that he's also suffering from short-term memory problems. As he said to me when I was visiting him, if I told him my phone number and immediately left the room, he'd forget it by the time I reached the door. Scary, scary stuff.
In other news, today my hematologist brought me my blood products history. I now have a detailed breakdown: between December 27 and April 11, I've received 22 blood transfusions and 11 platelet transfusions. Speaking of which, my last platelet transfusion was the worst in terms of my reaction to the Benadryl. No freaky dreams this time, but my head was messed up for hours after I woke up from my drug-induced nap. Normally, I eat and go for a walk to clear my head, but this time I was so zonked I didn't trust myself to walk. It's a good thing I decided to stay in my room, because for the next three hours or so I'd alternate between being completely zoned out—I had to lie down and couldn't keep my eyes open, though I wouldn't sleep—and hyper-alert. Sometimes I'd switch from one to the other in seconds, other times in minutes. Even when I was finally, really awake, I couldn't maintain my focus on anything for too long. Eventually the mental strain of it all exhausted me and I just went to sleep. For my next platelet transfusion, I'm going to risk some of the hives and ask for a half-dose of Benadryl. I'm not sure I can stand the effects of a full dose anymore.
Finally, a kinda funny story from last night: I had just finished writing a bio for the African Caribbean Leukaemia Trust and was going to take a break. Because of how I was sitting, I had to move my line (the tube that connects the IV pump to my chest catheter) out of the way first. So I reached around for it, and it wasn't there. I turned, and I saw part of the line on the bed, dribbling out the saline solution onto the sheet. Yikes! I clamped my catheter line to prevent anything from flowing in or out, rang the call bell, then pulled the release on the pump to deactivate the pump. Then I looked at my line, afraid that it would be empty of fluid—that would mean that air had gotten into the catheter, presenting a risk of infection or an embolism—and was relieved to see the meniscus (the little ball of liquid) at the top of a filled line. Pressure had kept it from draining, thank goodness.
When the nurse showed up I explained what had happened, and that I'd clamped my line and deactivated the pump. She said, "You did exactly what you should have done. It's like you didn't need me at all!" (A running joke around here is that I can start moonlighting as a nurse, considering the things I do or figure out for myself.) "Well," she continues, "Let me check your line to make sure no air got in." "Um, I already did. It's fine," I reply, holding it up.
The look on her face was priceless.
April 11, 2008
Seeing this gave me an idea for those who are so inclined: if you've posted a Heal Emru flyer, please take a photo of it. If you have an account on a photo-sharing site, please post it there and tag it with "healemru" and "heal emru," with the description linking it to the website. If you don't have an account on Flickr, then please send a copy of the photo to me and I'll post it on my Flickr page (with a credit to you, unless you say otherwise).
April 10, 2008
Massive room changes here—they've rearranged everyone so that the people who haven't got gastroenteritis are on one side of the ward, and those who have are on another. I'm now in a room in a quiet little corner.
I was interviewed last Friday for The Suburban; the article came out yesterday. Here's the link.
It looks like we're having measurable effect, at least here:
"[The number of black donors in Quebec] is starting to change," said Diane Roy, director of the stem cell donor registry of Héma-Québec.
Kristin Morency interviewed me last Friday for the Suburban weekly newspaper; it came out yesterday, and the article can be found online here, as well as in our Press section.
There are two things in the article that need to be addressed. They're actually fairly common misstatements (in fact, I make one of them in the article), but they should still be clarified for the sake of accuracy.
First, there aren't "less than 10 Afro-Caribbean bone marrow donors in Quebec," as it says in the first paragraph; there are fewer than 10 potential donors; that is, people who have registered to donate bone marrow. The second misstatement is along the same lines. It says, "Townsend said there are 227,000 registered donors in Canada, and 11 million people registered worldwide." That's probably not an error on Kristin
April 9, 2008
Two nights ago I was told that a case of gastroenteritis was detected in the ward, so I had to be extra-careful when leaving my room. (I already put on a mask and gloves whenever I go outside and I wash my hands religiously—the benefits of neutropenia—so I was covered.)
Last night, I commented to my nurse that it seemed pretty slow out there, and she said it was because of the gastro; while some people are being discharged as usual, no new patients are being admitted.
Today, I was handed a letter sent out by the hospital's chief of Infection Prevention and Control. As of now, no visitors aside from immediate family are allowed in the ward. I was looking forward to some visits over the next week, but it looks like they'll have to wait.
April 8, 2008
April 7, 2008
Two days ago I looked in the mirror and I had a downy head of short hair, and an equally soft and short beard. Well, short and long at the same time—the hair isn't as curly as usual, and it sticks out a bit more. Yesterday morning I was putting pomade on my scalp (it's still pretty dry in here) and my hands came away covered in hair. This morning, after washing my face, I noticed that most of the hair from the lower half of my jaw has disappeared. (Since the remaining hair is still kind of long, my sideburns looked a little like a low-rent Wolverine.) A few minutes ago I noticed half of my mustache is gone.
Well, that was quick.
Speaking of side effects, I've been joking since the beginning that I've dealt with some harsh chemo pretty well. I've always counted myself as lucky in that regard, but yesterday I found out just how lucky. While talking with another AML patient here (who is also black and waiting for a bone marrow transplant), he mentioned that the first time he went through chemotherapy almost a year ago, the cytarabine blinded him for fifteen days. (His most recent chemo finished around the same time as mine, and his vision is starting to go again now.)
Not for the first time, I was thankful that I've made it through three chemos pretty easily. But I also thought about how people keep saying my attitude is so good, I'm always up, etc., etc. Let me tell you, if my vision had started to go, I would have lost it. Just the thought of it makes me shake.
To end tonight's note, I should mention that I'm going to start posting edited versions of my e-mail messages on my blog starting with backdated archived messages (of course, you're reading this on the blog now, so it's kind of odd that I should write this; it's a little like some kind of strange time travel story where I go back to tell myself not to do something). After that, I'll be posting to both the list and the blog more or less simultaneously. Since I started writing about and photographing this adventure, people have been telling me that it's helped to demystify a lot for them. This has been especially true for people who have or had parents going through cancer; "don't talk about it" appears to be the dominant sentiment. So if it helps, why not?
April 4, 2008
A bit before noon today I found out that I was getting my 27th transfusion, this time of platelets. No surprise there, my platelet level has been hovering around the threshold for a transfusion for a few days now. However, the very first time I had a transfusion of platelets I broke out in hives, so now I get dosed with Benadryl through my IV before the platelet transfusion starts. The thing is, the Benadryl puts me to sleep pretty thoroughly, and I hadn't had lunch yet. And I was starved.
The platelets arrived pretty quickly, so I was started on the Benadryl not long after I was given the news—around 12:30, I'd guess. After about 15 minutes, I started to feel its effects, but lunch hadn't arrived. One of the housekeeping dudes showed up to empty the garbage cans and clean the room, and I started working on some variety sudoku to keep my brain going so I wouldn't just conk out. (I use puzzles like smokers use cigarettes—they can get me going or they can mellow me out, depending.) I had just solved the second puzzle when he finished mopping and put the wet-floor warning on the ground—and not two minutes later, my lunch arrives. Sharlene, who brings us our meals during the week, was rightly apprehensive about carrying the tray (it's not light) on a slippery floor, so she said she'd leave it on the reception desk just outside my room and bring it in in a few minutes. No problem, says I.
I'm just about finished another puzzle when I hear my name being spoken outside. I catch just a few bits:
"...Mr. Townsend's lunch."
"Is he not eating?"
I suddenly realize my lunch is in danger of being thrown out. I jumped out of bed, reached out for the IV pump, missed, realized that I was getting spacey and had to be careful, and got out there and asked the dietitian to bring my lunch tray in (she just happened to be the first person whose attention I could get). Phew! Lunch was saved.
I ate at a brisk but reasonable pace, did another puzzle to give the food a chance to settle a little bit, then curled up under the covers and fell asleep pretty much immediately. I then proceeded to have a really, really weird dream involving a shape-changing, dimension-hopping assassin who wanted me dead for some reason. Fortunately, I was also a dimension-hopping shape-changer, so I wasn't defenseless. The entire dream was epic, action-packed, at times psychedelic. It was also extremely vivid, and felt utterly real.
Suddenly I snapped awake. I shook my head at the strangeness of it all and went back to sleep—and wouldn't you know it, I have another bizarre dream, in which Steve Jobs has hired a goon to have me severely beaten because of something I've done. Turns out it's a case of mistaken identity, and his actual target is another Emru, a woman who is also a well-known but unstable amateur folk singer who has uncovered a government conspiracy involving bone marrow donor centres and is somehow, but for unrelated reasons, threatening Jobs. Like the first dream, it was very tangible.
I usually have pretty loopy dreams, but these two back to back were something of an experience. After I woke up, I had to spend a few minutes grounding myself in reality again.
I'm not sure if I'm looking forward to the next platelet transfusion or not.
April 3, 2008
Based on the responses I've been getting, I've realized that the bloody Tuesday experience probably sounded quite painful. It wasn't at all—I didn't feel a thing. It was just disgusting.
I should also mention that the condition of the sores are gradually but noticeably improving as of yesterday morning.
April 2, 2008
When I was writing the description to one of the new photos I posted on Flickr last night, I mentioned that my food is pureed because regular food can be abrasive to the sore-riddled tissue in my mouth. As I was typing that, I idly wondered just how sensitive my mouth actually is.
Last night I found out.
(Warning: The rest of this message is not for the squeamish.)
Before I go to bed every night, I clean the inside of my mouth as best as I can. For a while I brushed my teeth and gums anywhere that it didn't hurt to do so, but eventually rinsing out the baking soda toothpaste I use became too painful. A few days back Elly, a nursing student here, gave me a rinse that's made up of hydrogen peroxide buffered with glycerin and some other stuff—it cleans and only burns a little. So part of my new oral hygiene routine involves using an oral swab (it looks like a big spongy Q-Tip) to wipe the inside of my cheek and my gums using the rinse.
Normally this procedure is a little messy, because it also picks up the gunk from the thrush that developed in there. There's some whitish-orange stuff on the swab, I go "Ew," then I throw it away and do a rinse and spit. But last night was different: I took the swab out, and it was covered in goo, blood, and pieces of flesh that had just come off.
I was just shocked enough that it took me a second to throw away the swab and run the water in the sink. When I spat out what I thought would just be collected saliva and bits of blood, I was even more shocked to see a few more pieces of flesh.
Then came the blood. my platelet count is a little low (I've been hovering near the point where I'll need a transfusion), so cuts of any kind bleed more profusely. The first time was the worst: a thick, red mix of blood and saliva that spattered the sink with a fine pink spray. (I hadn't noticed it yet, but some of the larger pieces of flesh I had spit out were blocking some of the drain, so it was getting kind of icky in there.) The clinical part of my brain sprang into action: I was going to have to rinse my mouth out, but would the peroxide mix make things better or worse? Was there something in particular I should use or do? I reached behind me and pressed the nurse call button. Just as I spat out the second mouthful of goo, the speaker came on: "Can I help you?"
Gah. "I need to see my nurse, Stephanie, please." Spit.
Another nurse shows up, which is what happens if your nurse is otherwise occupied. He gets there just in time to see me spitting more gunk—more saliva than blood now—into the sink, and the first thing he asks is if I'm nauseous. I briefly think to myself, I suppose I should be, with all this vile stuff happening right now. It takes me a while to explain everything, and he says rinsing with a mild saline is the best way. When he came back a few moments later, my spitup was mostly saliva. I did a swirl and spit with a small amount of the saline (hoping that, even at .9%, the salt wouldn't burn the open cuts), and the whole thing was finally over. I washed my face, finished the rest of my evening routine, turned out the light and fell into the bed behind me, utterly exhausted.
The last thing I thought as I pulled the covers over myself was, "New rule: no more swabbing."
April 1, 2008
The last time I was in the hospital for chemotherapy, I was introduced to Jason, a young guy who also has AML (acute myelogenous leukemia) and was in need of a transplant. He had just finished that round of chemotherapy as I was starting my current one. I just got the news that he got not one, but three hits for compatible donors today. Congratulations, dude!
March 29, 2008
We were extremely fortunate that the media blitz occurred when it did. I was at peak energy, and I could speak.
That last point is the important one. Today, a common chemo side effect that had been starting to creep up on me really took hold: mouth sores.
Chemotherapy often strips mucous lining from your body—so often, everyone was surprised when it didn't happen to me at all the first time I went through chemo. One of the effects of that is that you lose most of the mucous protection in your mouth, so you develop mouth sores and ulcers, which can make it hard to eat, speak or swallow. I had micro-sores and a few ulcers last time for about six days, which meant a diet of pureed food (as well as popsicles, Jell-O, yogurt and applesauce) and regular use of two different kinds of lidocaine mouthwash. Affectionately termed magic mouthwash and pink lady, the first one was a swirl & swallow that would make it easier to eat and swallow painlessly; the second is stronger, not meant to be swallowed, and numbing. It's so numbing that it's dangerous to eat while it's effective, because your body can't read the cues it needs to direct the flow of substances from your mouth.
The sores are better and worse this time. Better because we saw them coming and so switched to pureed food earlier (minimizing irritation) and also because it's not so bad that I need pink lady. That stuff is nasty. The sores are worse this time because they go farther down my throat, which makes swallowing a little bit of an effort. Nothing huge—I just have to get accustomed to an extra step in the eating process. It's like there's a little air bubble in my esophagus I have to get past. Under my tongue is also affected, which makes it hard to move food around. Like last time, the sores are mostly on one side of my mouth, so some chewing has been possible of really soft foods—but now it hurts to get the food where it needs to go. I'd also like to take this opportunity to mention that tastewise, pureed food hasn't been so bad. In fact, I prefer the hospital's salmon & pasta dish better this way. And the vegetables are never overcooked.
Right now, the sores make it hard to speak, so I won't be answering the phone much. So to bring this back to the beginning, it's a good thing I had to do all that talking two days ago and not yesterday or today.
Got my 26th transfusion today—platelets this time, though the need was only borderline. Because I have an allergic reaction to the platelet transfusions, they have to give me Benadryl first. So I was asleep and/or loopy for a while. I also sometimes suffer from night sweats (due to the diabetes insipidus), which I find is really horrible to wake up to in the middle of the night. When they start happening, I start to fret about sleep, to the point where I need an anti-anxiety med before bed so I don't clench my teeth while I sleep. All of which to say I was doped up before and am doping up now, so if this is a little rambly, well, now you know. Maybe if I stopped listening to Fantastic Plastic Machine while I was typing it would help as well.
March 28, 2008
March 27, 2008
Bit of a media circus yesterday, in the best sense of the term. There was a writeup on me on page A6 of today's Montreal Gazette that highlights the need for minority donors. Because of our particular focus during the interview, I let one thing slip by me that I usually try to catch:
Townsend has taken his battle against cancer public to raise awareness for the need of Quebecers, and particularly people of Caribbean descent, to register as bone marrow donors.Actually, the need is there for blacks from anywhere (in my particular case) and all visible minorities as well.
March 26, 2008
When I woke up this morning, I knew I had an interview with a Montreal Gazette reporter this afternoon. Imagine my surprise when I checked my e-mail and discovered the beginnings of a Spanish translation of the website (which should start appearing soon, along with the URL curaremru.com to go along with healemru.com and aideemru.com. A good start, right?
The mania started almost as soon as I got back to my room. After getting off the phone it's been a nonstop parade of reporters in here and on the phone. Tonight CBC Montreal and CTV are airing stories about me (rocking my Green Lantern t-shirt, I might add) at 6:00 p.m.; at 1:05 I was on 940 AM talk radio (audio to be posted on the site soon), and at 5:40 or so I'll be on CBC Radio 1 in Montreal during Homerun. Tamu told me about a reporter from the French-language Le Devoir newspaper, and Vicky just got a call from a Canadian Press reporter for an interview tomorrow. Oh, and as for that Gazette article, I have no idea when it'll run, though I think it was supposed to be for this weekend.
March 24, 2008
In the last few days I've had a couple of conversations about chemotherapy, and I've been thinking about how it can be hard to tell the poison from the cure.
I started joking about how badass chemo is back when I was recovering from the in January, lounging around and waiting for my counts to come up. Anna, one of the nurses, expressed her surprise to Vicky and I at how well I had gotten through everything, considering how hard that particular chemo cocktail was. "Really?" was all I could say, because I had no idea. I mean, I knew that chemo can ravage your system—that's part of the idea—but I also knew that specific side effects were something of a crapshoot. Still, it was an issue that came up each time I was readmitted. "You took to it well last time, so you should sail through it this time," things like that.
That's generally been true. This time around is probably the worst because of constant stomach issues (no nausea, but still discomfort), but that's peanuts compared to what could happen. But after my last semi-joking message about the etoposide—about how little actual etoposide was suspended in saline—I started thinking about just how potent this stuff is.
This evening I get my last dose of cyclophoshamide. About an hour before I get it, I get an intravenous dose of Decadron, a steroid, to fortify my system to handle the cyclophosphamide. Then I get Zofran, an anti-nausea drug. Then the cyclophoshamide itself is delivered over two hours—less than a small Coke bottle's worth, if I remember my numbers correctly—and two hours after that I'm given Lasix, a diuretic. Why? Because by then the cyclophosphamide has worked through my bloodstream, but it's toxic to my kidneys so it has to get out ASAP. At some point while I'm still running to the bathroom, they hook me up to more Zofran.
Aside from the exercise I get running back and forth to the bathroom, all I feel is the stomach discomfort that's thankfully tempered by the Zofran. But inside, it's just horror. Bewildering, isn't it?
On a lighter and fuzzier note, my hair is still growing back, and I think one of the possible side effects might be occurring: my beard appears to be coming back softer and less curly than usual. It's actually quite nice. Maybe I can rock the Frederick Douglass thing after all this is over.
March 21, 2008
After my posting about donating platelets as a way to get around paying the cost of donating marrow in Denton, Texas, I was curious about how many transfusions I've received. I couldn't get the exact breakdown between blood and platelet transfusions, but including the two blood transfusions I had today, I've had 25 transfusions since mid-December, when all this started. Wow.
[For the more sensitive souls in the audience, all curse words in this message have been replaced with their Battlestar Galactica equivalents.]
So early this morning I had a little freakout. it was around 4:00 or 5:00 a.m., and I was catching some Zs between my frequent dashes to the bathroom (6 liters of fluid over 24 hours, remember?). Suddenly I wake up and there's a man standing at the foot of my bed. He's not a hospital staffer. He's an aboriginal dude, wearing a winter jacket over a hospital gown over pajamas. He's not looking at me. He's staring out the window, and he's clearly saying this word that I don't understand. In my head I'm screaming, "What the frak! What the frak!? What the frak?!?" but what happens instead is I turn on my radio voice and boom, "Wrong room!" The guy looks at me, turns around, and shuffles out the door.
Now, this is remarkable. Because I'm a sound sleeper and I've been paranoid about laptop theft (I didn't get the locks I needed until today), I'd rigged a little nighttime alarm in my room. This particular bathroom door just won't stay ajar; if it's not closed all the way, it happily swings open, becoming an obstacle for the room door. Normally it's a pain, but at night it's great; someone who just walks in will bang the door, startling both them and me. This guy, however, must have shuffled in the way he shuffled out, so he never hit the door and I dozed merrily until I realized someone was in the room.
Of course, I couldn't sleep after he was gone. When the nurse came in to do my bloods (which is usually around 6:00), I explained to her why I was already awake and alert. She said, "I've been chasing that guy all night!" Apparently at 11:00, after his family left, he put on his clothes and tried to leave. Since he's a bit disoriented, he's just been trying every door he finds, hoping to find an exit. She finds him, puts him back in his room and explains that he has to stay, and then it starts again.
(I've seen this happen before, coincidentally with another, younger aboriginal guy, just last month. I was out for my afternoon stroll, and this guy was walking out with his friend when a nurse stopped him and asked where he was going. "I feel fine. I'm going home," he said. "It doesn't work that way," said the nurse. "You're still sick." His friend looked like he'd been punched in the gut; he probably had no idea that they shouldn't be leaving.)
Other, less exciting stuff going on. My chest discomfort (I still can't call it pain—I barely notice it most of the time) is persisting and just marginally worse, so I'm getting four daily doses of milk of magnesia in case it's acid reflux. Yum. My hemoglobin count was low, so I got two blood transfusions today. (I found out that, including those, I've had 25 transfusions of blood or platelets since my first hospital stay. Remember, the marrow is crucial, but donate blood and platelets too!)
I finished my etoposide regimen today, thank goodness. It's had me running to the bathroom nonstop, with sometimes as little as ten minutes between visits. The only other side effect has been a little bit of persistent stomach discomfort, along with some water retention (my feet look like sausages, with five little sausages on the end, but my skin looks great). The cyclophosphamide started this evening, and it's not quite as intense. For one thing, it's not constant: I get it for two hours a day, probably over the next four days (I don't have my copy of the order on hand, so I'm going from memory here). Unlike the etoposide, which was a mere 20.8 mL per liter of saline, the cyclophosphamide is 190 mL per liter of saline. So clearly it's not as bad-ass. (I might regret saying that.) One difference is how fast they pump the stuff into me. The etoposide was coming in at a steady stream of 203 mL/hour for 64 hours; the cyclophosphamide is being delivered at 519 mL/hour for these two-hour bursts. It doesn't feel any different, but... dang. Oh, and every night after the cyclophosphamide is done I get a diuretic. More bathroom visits! My nights will be fun, I tell you.
Bit of a media blitz this week. The Chronicle, a weekly newspaper that comes out in several editions in Montreal, had a front-page story on me (with a great picture of me and Max) on Wednesday, then on Thursday another Montreal weekly, Hour, ran a story using one of Vicky's photos of me with the caption, "Who says chemo can't be sexy?" The website is almost always up on one of the computers in the nurses' station, and it caught the attention of my hematologist, who's (a) really impressed by the amount of work we're doing on it and the people who have helped out, and (b) astonished that I'm doing all this work on dialup.
Huh. My chemo dose just ended, and without thinking I punched the keys to set the IV pumps to clear out the overfill from the bag to save the nurse the trouble. I've really been here too long.
March 20, 2008
Another article about my condition today, this time in today's Hour. Jamie O'Meara rightly points out that donating marrow is one of the easiest forms of heroism you'll ever do.
I'll just add that donating blood, platelets, and organs are right up on that list. A little bit of your time (or, after you're gone, a little bit of your body) can extend someone's life. You've probably watched TV shows or movies you don't particularly like; the next time you get the urge to "just kill time," why not head down to a donor clinic instead? Bring a book and you get to feed your brain and your karma.
I've been meaning to post an update, but circumstances prevented me from getting to it until now. Nothing alarming, just, well, circumstances.
When I came in on Sunday night, I was set up in a semi-private room as all the private rooms were taken. I was finally moved into a private room yesterday. (Remember the reckless guy I mentioned who also had AML and was waiting for a transplant? It's his old room. He got out just the day before.)
Meanwhile, there's always interesting stuff going on. My roommate in the semi-private room is an older (at least, older than me) woman who had been diagnosed with some kind of cancer in her lungs and brain, but there were still some questions that testing had yet to answer. She was, understandably, in a bit of a state, what with being in pain, with limited mobility (ten years of prednisone had worked over her bones pretty hard) and trying to absorb all this. When her family wasn't around we spent some time talking about cancer and coping.
I started chemo yesterday. This is a seven-day affair, but unlike previous ones I'm not taking any elements of the new cocktail simultaneously. That says to me that these chemicals are particularly bad-ass; they don't even play well with each other. The first one is etoposide, which is administered in an interesting way: a mere 20.8 mL of the stuff is mixed in with a liter of .9% saline—that's less than the margin of overfill in each bag. But even that tiny amount is enough to keep my stomach in a permanent state of unrest. (Not actual nausea, or even stomach upset—the Zofran and ginger tea are seeing to that—but it is uncomfortable.) The thing is, for the 64 hours of continuous treatment I'm getting for the first phase, I'm taking in 6 liters of fluid every 24 hours. To put that in context: you know how hard it is to drink that (bogus) recommended 8 cups of water a day? Those 8 cups come out to less than 2 liters. With so much fluid going into me, I have to make very frequent trips to the bathroom, even through the night—despite upping my desmopressin dose (for the diabetes insipidus) to its earlier levels. I also have to keep a close eye on my weight to make sure I'm not retaining too much water—if that happens, then they'll put me on a furosemide, a diuretic.
Can't wait until I switch to cyclophosphamide. I'm told that (a) I will most definitely get mouth sores again, and (b) they might well be worse. Things to look forward to!
I spent about six hours yesterday evening catching up on healemru.com-related stuff, adding some new flyers and adding registries from 37 new countries. If you haven't told your far-flung friends about donating bone marrow yet, now is a good time. I've also been adding information about bone marrow drives, and Californian readers should take note that there are two drives coming up on March 29 (Victorville) and April 19 (Palo Alto).
I woke up this morning with a scratchy throat, some sniffles, and a mildly uncomfortable chest. My hematologist had mentioned on Monday that RSV (Respiratory Syncytial Virus) has been going around, so when I mentioned the throat and chest, the nurses and med student swung into action. That meant a throat swab, an electrocardiogram, and a mucus culture. The mucus culture is taken by sticking a (lubricated, thank goodness) tube up my right nostril and into the back of my throat. Some saline gets sprayed in there as well. In my usual odd way, the throat swab was the hardest of the three.
Anyway, that's it for now. Look for new photos on Flickr soon, and ever more excitin' updates.
March 19, 2008
On Friday my sister and I were interviewed for the Chronicle about our search for a bone marrow donor. On Saturday they sent a photographer over, who got some nice pics of me and my son to go with the article. The article and the best of the four pictures he took went up today. Have a look.
March 14, 2008
The results are in from yesterday's bone marrow biopsy, and while the blast count is still low, it's not low enough. My third stint in the joint starts Monday. This time around, however, I plan to bring my laptop (with its brand-new 56K modem) so I can keep connected, maintain my sites, and keep writing.
For those who are interested, the next three paragraphs contain the lowdown of events that led to the uncertainty of whether or not I was in remission. If you aren't interested in the medical stuff, you can skip ahead.
First of all, remission is not necessarily cure. Remission is just the reduction of a cancer to an acceptable level. The first phase of chemo (called the induction) is meant to reduce the amount of blast cells (lymphoblasts or myeloblasts, proto-cells that don't normally show up in healthy blood) to something like 5%. (Five percent of what, I don't know.) If that's successful, then we say I'm in remission and we move on to the next phase of chemo (consolidation), which wipes out most or all of the rest.
A certain amount of time after induction is finished and my body has had a chance to rebuild itself, I get a bone marrow biopsy to determine if I'm in remission or not. Last Monday (the 3rd), I had mine. The results were a little puzzling: the liquid bone marrow (also called the aspirate) and the solid marrow had two different levels of blast cells—one too high (though only a little), the other just fine. As a a result, the doctors were in disagreement as to whether I should be admitted. My hematologist preferred to err on the side of caution and admit me for chemo.
However, the day I went in to discuss the marrow results, I also had my usual blood test. It turned out that the resulting blood smear showed a low number of blast cells. Rather than possibly subject me to chemo unnecessarily, my hematologist decided that it would be best if I had another biopsy to be absolutely sure. That biopsy was yesterday, and this time it was clear: I needed to be readmitted.
So I was admitted today, and a bed was waiting for me. However, since I want to get some things in order before spending another four weeks in stir (sorting out bills, converting more Gatchaman episodes for the PSP, etc.) I've got a weekend pass. I'll actually be starting my chemo on Sunday evening.
What more to say? Third time should be the charm.