Whew. I've been trying to do too much, too fast. Just too aggressive. In my post-op meeting with my surgeon he medically okayed sleeping normally - instead of elevating my head. He wanted me to do what's comfortable and let comfort be my guide. My north-star. So that night, Wednesday night, I laid flatter than I had the past few nights. But, early in the morning my head felt cloudy or weird. Like I was under water. Like there was too much pressure. I elevated my head a bit and felt much better. Once I elevated it felt like some of that water was draining away.
Earlier on Wednesday I had met with both my neuro-surgeon and my neuro-oncologist to discuss the surgery and the post-op MRI and the pathology of what was removed during the surgery. What they informed me is that with the cyst some tumor tissue was removed too.
The tumor tissue was hard to categorize, but the tumor in 2016 was a glioblastoma so this is called a glioblastoma too. What is weird about this tissue is that it displays a genetic marker, PD-L1 or PDL-1 (I've seen it written both ways), that most glioblastomas don't show. There is an immunotherapy infusion drug, called Imfinzi, that works well on this specific genetic presentation. The drug is usually used for bladder and lung cancers but has shown success on brain cancer too. I am now finished with my old trial drug (good bye 12 pills a day, good bye intrusive eating schedule! You were acceptable as long as you provided a benefit but now that time has passed and you are more than free to go! I'm not at all sad to see those things go if it doesn't translate well to writing).
We got the ball rolling on the immunotherapy immediately. I had a meeting already scheduled with my neuro-oncologist this Wednesday. That will stand and now function as the second part of the recent immunotherapy meeting.
The span from one appointment to the next gives an opportunity to digest everything. We went to one wedding, outside of Pittsburgh, last weekend, to another, outside of Seattle, this coming weekend. Thursday morning I had at-home physical therapy. Thursday night we went to a show put on by the studio Julie manages at. Then, later that night, we went home to pack so that we could get up super early and fly to Pennsylvania early the next morning.
The weddings (and the week between them) allow (/already started to allow) me the chance to metorphorically elevate my head. Like an intentional sabbatical from social media or a silent retreat. While I'm away I can't do much in the way of cancer treatments (I'm not remotely near home and most of the people professionally working on my case have the weekends off) and while I'm in SoCal (or not in SoCal) I need to find another new balance, doing things more slowly and more measured and more deliberately. During the week's time I need to recalibrate - again (or as the airport in Milwaukee says "recombobulate"). In the time away I will get to be with friends, celebrate, and relax. This recombobulation means accepting the ever changing reality and then making the most of what is available rather than forcing things. An opportunity to "hold on loosely" and not "squeeze too tightly." Hopefully at the end of the week I'm rejuvenated and refreshed. Reinvigorated and ready to show a little more patience as a patient. A slower, more measured, more deliberate, approach. And an approach more prepared for this infusion therapy, whenever it starts, too.