As I shared in my “treatment overview” post that kicked off this May’s Brain Tumour Awareness Month, my path since diagnosis with a glioma in 2012 is divided into clearly defined and discrete chapters in my memory. I’ve written about all of them over the three years of this blog, most recently covering my adventures in surgery and combined radiation/chemo since my tumour progressed a year ago.
That brings me to my current chapter, the six months of chemotherapy that have followed on after I completed the combined rad/chemo last Nov. At the end of December 2015, I started my first week of higher dose oral temozolomide. With that, I entered yet another incarnation of the treatment treadmill, this one with a new pace and format. For the past six months I’ve been doing one week of chemo, three weeks off, per month. I’ve found that this is strategically timed so that I get to feeling pretty much back to myself about a week before I’m to start another round. I am grateful and fortunate to have health benefits that have allowed me to be off work to recuperate between rounds of chemo, and family and friends around me to support me when I want to go crazy over how long this all seems to take.
I continue to undergo monitoring MRI scans every three months. My last scan, in February, was completely clear, showing none of the residue tumour cells that remained in the scan right after my surgery, which was encouraging. I have continued to stick to much of the routine I established during my radiation treatments, with the same goals in mind, with a few modifications. During the week I’m on treatment, and for some days afterward, the main and only side effects I have experienced are nausea and gastro issues (at the risk of oversharing, read that to mean irregularity in the BM department). When I go for my oncology check-ins before each round, I feel fortunate when they read off the list of possible side effects and ask if I’m having any of those, that I can say “no”. But it’s all relative. The side effects I do have keep me a little house-bound and unmotivated, though I think I’m either getting used to them, or they are growing more mild over time. And I’m glad to report that over all the weeks of both rad/chemo and follow-on chemo, I have only had one occurrence where my blood cell counts were too low, and we had to delay chemo by a week. I still view that blotch on my record as an outlier; I should have had them test it again, I bet it was a mistake. I really believe that sticking to good nutrition and some level of physical activity has served me well throughout this time, and been responsible for the relatively smooth progress I’ve made.
I continue to stick to my nutritional approach, and am starting to re-integrate some staples into my diet that I couldn’t even look at after I ate so much of them during radiation (like avocados and my keto cereal). I continue to make moving my body, even if it’s just gentle yoga, a daily thing. I make a lot of coffee dates to keep in touch with friends and the WORLD. Because that’s the biggest challenge, for me, in this chapter. It’s such a weird pace of feeling under the weather, then okay, then starting over again, and it seems very easy to become isolated. It feels like the world of work and friends continues to turn, and I’m disconnected in a world of my own, on a routine that seems long and drawn out, and outside of everyone else’s experience. It’s like chemotherapeutic suspended animation.
I mark the days and weeks with small things. The patchy hair loss I experienced from radiation treatments is almost grown in. I’ve watched my body return to its familiar shape and size, with the loss of the weight and puffiness I acquired during radiation, which I chalk up largely to the steroids I was on to prevent swelling in my brain. I’ve counted down rounds of chemo, until I face the last of six, and another MRI. I feel ambivalent about next steps, wondering what lies beyond this “routine” now? Some new normal I expect. Hopefully involving clear scans and less stress on my family! I fully expect the next challenge will be to revisit my mindfulness practices with renewed commitment as I learn to focus ever more on the present and live with fears of recurrence. I feel like the prospect of returning to the life and routine I had before last September’s surgery is unreal; I am changed, that life and that me are no more, so I will just have to wait and see what is in store for me next.