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.