Yesterday I had two appointments: My first was “mapping” for radiation and the second was a follow up appointment with my oncologist. I thought it was going to be a somewhat momentous day, but it turned out to be fairly lame and a little discouraging.

The mapping was nothing more than a CT scan which the radiologists will use to plan my radiation treatment using the scan results to figure out how to target the machines to get the best exposure in the right places, without radiating my heart, lungs and other essential organs. They want to radiate a pretty large area including the breast, the axillary and some lymph nodes near my collarbone. It will take them a few days to make their plans and then I will go in for my first session sometime next week (not Monday.) That will be an hour-long session where they do more marking and setting up, and giving me my first treatment. After that the sessions will last about 15 minutes, occurring Monday-through-Friday for around 28 sessions. I will finish a few days after Halloween. Maybe I can do a glow-in-the-dark costume.

I was given my “graduation gift” at my second appointment, a bead bracelet with a couple of pink beads and the breast cancer “ribbon” bead. I was also given a subject packet for a trial that my doctor would like me to join after I complete the radiation. Dr. Cobleigh would like me to add Everolimus to the Tamoxifen that is part of my post-chemo regimen (though there is a 50-50 chance that I’d be assigned a placebo instead.) The subject packet is about 10 pages long and at least 6 of the pages list the possible side effects of the various medications. At the top of the list for Everolimus is mouth sores, followed by infections, anemia, and so on. After managing to get through chemo without any dreaded mouth sores, it’s difficult for me to think of taking that risk again.

Participating in the trial is completely voluntary, but it is the only way to get the medicine. It is above and beyond the treatment plan that I accepted as necessary last winter so I am really struggling with the decision. I still have 5-6 weeks of radiation ahead of me, as well as at least two surgeries. I’m looking at least a yearlong process of hair regrowth. And I know I have to take Tamoxifen, an estrogen-repressing drug, for the next five years, wondering if what side effects that may produce.

I also wonder when to say “enough?” At what point do I trust the many prayers for healing that have been prayed on my behalf? And, bottom line, trust God for whatever He has for me in the days ahead? Statistically, I have a 40% chance of recurrence, according to my oncologist, but has anyone factored prayer into the studies? I have a 100% chance of dying someday and as a believer, I want to frame that positively, not spend my life trying to avoid death. I’m going to a better place–and while I might not want to go just yet–I do want to anticipate heaven more than I want to cling to whatever life I can squeeze out of this body. I also don’t want to spend that life being sick.

Another smaller decision is whether to have the port taken out. My doctor likes to leave it in for 2 years but I would like it out. The surgeon who put it in told me that it was up to me and from the beginning I’ve planned to have it taken out sooner rather than later. First of all, the reason for leaving it in is for the possibility of future chemo. If I am reluctant to consider further chemotherapy, it seems silly to leave it in. (The surgeon who put it in told me he could put another one in if needed.) It also lies just beneath my left collarbone, right in the path of my seatbelt and bothers my sleep in certain positions. Those seem like good enough reasons to have it removed. Plus, it could be done during either of the two surgeries I will undergo this fall/winter, thus requiring one less surgery down the road (albeit minor.)

I’ve been a “good” (i.e. compliant) patient throughout this process, fairly passively accepting the recommendations of my specialists for surgery, chemo, radiation and Tamoxifen. Now I’m wondering if it isn’t time for me to take a stronger role in the decisions before me–and feeling a bit guilty in the process. (I think that’s the nurse in me.) I really don’t have to decide anything right away, but i find myself carrying on a non-stop argument, weighing the pros and cons, trying to see all the angles. Maybe I’m “mapping” the decision.

P.S. I discussed it with my primary care doctor today and after looking at the information, he agreed that Everolimus comes with a pretty high side effect profile so I felt justified in my concerns about entering this trial. No decision yet, but I feel more at peace about the process.