Last week was all about the machinery of the cancer care system coming into motion for me. It lagged my last biopsy, and the disappointing results that it showed, by a week. But, thanks to the very helpful people at the Dana Farber Cancer Institute (DFCI) in Boston, things started to fall into place very quickly. In short order, there were two oncology appointments, an MRI, CT Scan, an appointment with my current doctor and, I'm sure, a few things that I've left out. By Thursday, we had two options for the chemo therapy, and an outline of some of what to expect over the next 10 weeks. I still have a very real frustration/concern that we are starting late. In that context, it feels good to finally be stepping on to the trolley.
Being treated at Dana Farber is very personal for me. Reminders of my cycling are everywhere. In 2001, when I took up cycling as a hobby, I needed a goal to make me take it seriously. So, despite having never pedaled further than about 20 miles, I registered for the 2002 Pan Mass Challenge. It was my first organized ride. It raises funds to support children's cancer care and research at, you guessed it, the Dana Farber Cancer Institute. I had no immediate connection to cancer at the time. But, as a parent, I couldn't imagine a more difficult pain than a parent feels for the loss or serious illness of one of their children. The PMC was the right ride for me. I've done the ride each year since, and with one or more (sometimes all four!) of my kids for each of the past nine years.
In any case, among other things, the connecting bridge between two of the buildings at Farber is named and decorated as the PMC bridge. I can't describe the emotions of my first walk over that bridge.. I've biked well over 1,000 miles on the PMC, all easier than the short walk over the PMC bridge.
Today, Monday, Fran and I had a final meeting with my oncologist to review the plan for chemo and sign the necessary consent forms and, of course, a few more tests.
DFCI is very team oriented. Today, in addition to the oncologist, we were joined by a pharma doctor and another member of the team. The pharma doctor gave the complete run down on all the drugs in the trial. Strong stuff. Of course, we all have our preconceptions of chemo and, at least for me, they are scary. This, to hear it described, is something that they've gotten pretty good at "managing". I hope that is correct!
If it goes well, the process will be a three day, every other week affair. Day one is a less toxic chemical, administered in less than an hour. Day two is the prime time stuff, administered over 4+ hours -- apparently they bracket the toxic stuff with something to keep the kidneys well hydrated, to minimize potential damage. Day three is just an injection...I can administer it at home, if I'd like. They will give me a lesson tomorrow. Sounds like the off week in each two week cycle is the more worrisome one, where the immune system is weakest, and I'm likely to feel most fatigued, etc. And, is cumulative...will be more pronounced after the second cycle than the first, etc. Oh, and I may lose some, or all, of my hair (temporarily) or some of my hearing (perhaps not so temporarily). Then, four to six weeks after the last treatment, the surgery.
During the chemo, to the degree that it works for me, they encouraged maintaining a normal schedule, diet, and exercise. Of course, my "normal" schedule includes a lot of travel, which is not recommended. I may also want avoid public transit and the commuter rail.
Finally, I asked about my favorite exercise, cycling. The pharma doctor thought I was asking if I could bike to the hospital for the chemo. That answer was a clear NO. But, beyond that, they were all clear that if I feel up to it, they would encourage it. I'm thinking it is time to set up the indoor trainer again :-). Hope I don't shed all over the family room ....
In the meantime, my Mom is coming up tonight to join me for the first couple of days of chemo. This isn't something a mother should ever have to do. That is why I ride the PMC! Hopefully, for the next generation.
For me, a mixed stew of emotions....anxious to get started, angry/upset to be here, appreciative of the care and support from family and friends. This would be a very lonely spot to occupy alone.