Chronicle of a Stem Cell Transplant (and on through to the other side)

Thursday, September 25, 2008

Live From Texas


Here we are in the Lone Star State.

As you can imagine, many times in the last two and a half years I think to myself, Well how the hell did I get here? That was certainly the case the first morning after our arrival on Monday (as I was eating my free continental breakfast) and realized my waffle had intentionally been made in the shape of Texas State. I thought adding syrup was a good way to mimic some of the damage caused by Hurricane Ike, but reminded myself that to do so would be highly inappropriate.


M.D. Anderson and the Texas Medical Centre (I know that should be Center, but I can't do it) are truly incredible - in size, in efficiency, cleanliness, and, most importantly, in care. It makes me sad that the world is not a place where everyone has access to such a high level of health care and I am grateful and lucky (well, depending on how you look at it) to be here.

We have been pretty busy since arriving; I've been having a full work-up (again) so that the most appropriate treatment options can be recommended. Today, I had not one, but two bone marrow biopsies (both hips, from the back) and it was nothing like my last painful and frightening experience because I was knocked out.

Of course, I always think I will be the only person in the history of humankind who won't fall asleep after being anesthetized or will wake up screaming in the middle of having the bone extracted, but, as always, it was "How long will this..." Nighty night. My lower back is a little sore now and sleeping comfortably might be a bit of a challenge tonight, but I was just so relieved to not go through what I went through last time.

Tomorrow is a full day too. I will have my ninth PET scan (I was wrong last time when I said I'd had seven), chest x-rays, and CT scans. I have to fast for both scans which means, after this evening, I won't be eating until about four in the afternoon tomorrow. God help us all. I'm not very nice when I'm hungry.

As far as I know, tomorrow will be the end of all the tests and we have a long weekend to explore the area as we don't meet with my doctor to receive his recommendations until Tuesday. I'll also be seeing my lovely writer friend, Baranna, who, we both agree, was fatefully my roommate at the writing retreat I attended in Connecticut last fall. I'm also vying for a road trip to the Louisiana state line just so I can say we've been there. We'll also need to stick our feet in the Gulf of Mexico somewhere along the way.

While we're busy enjoying some southern comforts here, this weekend, some of my amazing friends and former colleagues will be participating in The Leukemia & Lymphoma Society's Light the Night Walk at home. This is the walk that happens along the seawall in Vancouver every year and the one that my colleagues graciously participated in while I was having my stem cell transplant (which, incredibly, was two years ago next week). Last year, we were able to join them and it was a very emotional experience.

Also, another of my incredible friends, Leah, has asked to walk in my honour, and, as I told her, it is impossible to put into words what it means to have people make continuous gestures of unbelievable kindness toward me and my family. You can visit her fundraising page (and a life-size picture of my head) here.

As if that weren't enough, this weekend is the culmination of all of Lisa's incredible (I really need a new adjective here) work toward her Team in Training Century Ride in Honolulu. A number of you joined us at her fundraiser, Century @ Deuce, this past June and, if you have been following my blog, will know that Lisa completed every step of the TNT Vancouver Marathon with me (and Zoe) last June. She also went on to coach the following season. Again, words just don't cut it.

What a week.

Sunday, September 21, 2008

Giddy Up

We're off to Texas.

We thought we'd take a romantic excursion to a FEMA disaster site with my parents to receive cancer treatment.


Just kidding (sorry mom and B)...

After getting very little support medically in Vancouver since I came home, we decided last Thursday to finally head to MD Anderson in Houston (just hit by Hurricane Ike) to see if we can't get more innovative treatment ideas. Within about three hours, our appointment with Dr. Anas Younes (who is doing a lot of work in clinical trials for refractory Hodgkin's), flights and hotel were booked. We leave tomorrow.

My immense gratitude to all of you, at home, abroad, and on the web and boards, who continuously encourage me and extend such incredible offers of kindness. It is, as always, truly overwhelming. Know that each and every deed is received with my utmost gratitude and appreciation.

Tonight, we're all packed and feel ready to go because, to quote Dr. Phil (and I'm not quite sure why I can), "This ain't my first rodeo, son."

Sunday, September 14, 2008

Trials and Tribulations

Hmm. Where to start. It's been a quite a few weeks.

Let me start by saying that we are back in Vancouver.

After our last visit here, we flew back to Montreal to have our next hospital day/ PET scan on the Monday and were a little caught off guard when my oncologist came in and said, "It wasn't a good scan."

Of course, the idea of a less-than-perfect scan had crossed my mind, as I have now had seven of them and getting the results is always nervy. However, with this one, I was more focused on whether I would take the opportunity of a window of regressed disease to have an allogeneic (donor) transplant as my oncologist had been recommending I do.

Instead, the conversation went more like, "Unfortunately, the disease has progressed, so you are off the trial." Just like that. No card. No flowers. Not even a lame yellow participation ribbon for trying.

So, following that news, it was a surreal day spent at the hospital; coincidentally, I needed a blood transfusion, which was no big deal except that with everyone trying to figure out what to do with me, it was utterly overwhelming waiting while nurses, doctors and various coordinators were coming up with a plan. By the sound of it, I was going to be in the hospital as early as the following week getting set up for a tandem transplant.

So, not only were they proposing the treatment I least wanted to do (another transplant), they were suggesting TWO of the bloody things. The first would be autologous with my own cells, if they are still harvestable, using high-dose chemo again to knock the disease back as much as possible. Once that's done, I would then have an allogeneic transplant using donor cells to try to induce what is known as Graft Versus Tumour effect, where the donor cells come in and get rid of the cancer in a way that my body hasn't been able to do on its own.

The problem with an allogeneic transplant is that a very fine balance must be struck to ensure that the donor cells do not start attacking the organs of their host (me), known as Graft Versus Host Disease. It is not an ideal or perfected process. Vancouver, as far as we know, has stopped doing them due to low success rates (this is a dangerously conservative province in terms of treatment if you're in my shoes). Montreal and Toronto do quite a few and Fred Hutchinson in Seattle pioneered the treatment and do many, as does MD Anderson in Houston. Never mind that I would have to sell one of my kidneys to be able to afford it in the US. Lisa has said she will sell one of Paul's too, in addition to a few other of his unmentionables, which would undoubtedly be helpful.

Anyway, back to Montreal, where, after we received the news, things were all a little overwhelming, to say the least. I never thought I would utter these words in my life time, but, thank god for Duran Duran. While pathetically huddled under my blanket, in my chemo lounger in the corner of the clinic tearfully watching all of this going on, I was thankful for my iPod's selection of "Falling Down" by the aforementioned group (now is not the time to ask why it was on my iPod in the first place). If you know the words to the song, then you can imagine how cathartic it was to crank it at that moment, even if I was sharing the lament with Simon Le Bon.

After my mom's immediate consultation the same day (we don't wait for appointments anymore) with my oncologist here, we decided that I would come home, at least temporarily, to further explore my treatment options and to spend some time recovering from the trial drug. While it did, for a time, have a positive effect, I also found that the MGCD was very hard on my body. I had fairly severe gastrointestinal issues, lost over ten pounds from a loss of appetite, developed an insane itch that has left me literally sleepless for over a month, and had about a 75% drop in energy that made regular activities extremely challenging.

Coming home and being off the drug for a few weeks has allowed me time to recuperate, though it is still not an ideal situation. I've managed to regain some weight, but the pruritus (itching) continues (could be the Hodgkin's or another underlying issue), which means the sleeplessness does too, but my parents and Ian have been amazing. There is no end to their care, from staying up with me all night, foot rubs, driving me to all my appointments, to satisfying my newly acquired taste for Peanut Buster Parfaits (I'm going to need to curb that habit pretty quickly).

At this point, there is still no word on what I will be doing treatment-wise. Ultimately, of course, that decision resides with me, but we are still in the information-gathering phase (again). Despite all that happened (and didn't happen) in Montreal, we are glad we took the chance; we fell in love with the city, and made some life-long friends, as well, of course, as losing one.

After I flew back on the Wednesday, Ian stayed behind for an extra few days to get things sorted with our apartment, etc. In the midst of all this, my dad was also driving our Jeep across the country so we could have it in Montreal. So as soon as we got the news, he had just got through the most tedious part of the drive, to Winnipeg, and had to turn around and do it all again in reverse. However, we are sure he enjoyed researching the cost of gasoline across the country.

So, that is the view from here. Recovering my energy is slow and I have a lot of appointments, but we have also been enjoying the cooler weather and beauty of our wonderful city. It goes without saying that being home with my family and friends is the sweetest reward of all.