Short: Last week, I had a PET scan of my brain, which points to where new cancer might be growing. I’m relieved the results didn’t show active cancer in my brain!
I’m starting another round of chemo this evening. It’s one pill (Lomustine or CCNU) that I take every 6 weeks, and last round went pretty well.
The night I had the brain scan, I woke Jenny in the middle of the night because I was vomiting and had a somewhat strong headache. Jenny helped clean out and replace my puke bowl. I felt stability and Jenny’s exhaustion and heroism in our joint surrendering. We didn’t know if vomiting if was from my brain tumor or from a random stomach bug. We still don’t know. But the next morning, we found out the PET scan didn’t show cancer growth.
As I’m writing this post, I’m crying as Jenny’s typing -- I’m trying to turn my confusing sentences into something Jenny can write into a post. Lately I’ve been feeling more angry and impatient with myself, having trouble expressing ideas that are hard to put into language. I know it’s not my brain’s fault, it’s just hard sometimes. I’ve also been feeling a lot of love for my brain and the rest of my body.
Jumping back 22 years ago: When Jenny and I got engaged, we sat together in silence, and we each asked each other to get married. For my turn, I awkwardly sang to Jenny, the Jonathan Richman song, “Higher Power,” which I’m attaching to this post. I sang, “It's magic the way we got together. It's magic, no not at random. And there must be a higher power some place.” Belonging in love with Jenny is still the best medicine for me, as is belonging with love in all forms. I want all those experiments to be in partnership with the higher power in the song.
Jenny has been distinctly finding that power in our time together -- the strength to deal with cancer and more. After four years with cancer and six surgeries, Jenny’s endurance has kept us moving through the pain and joy of it all. A few weeks ago, Jenny sat next to me when I did a talk for some nurses, in case I got confused in my language. I feel gratitude and meaning that I can still take the risk of doing public talks even though I don’t know if it’s going to make sense when I say things in front of people. And though I’m not as patient with my language as I’d like to be, it’s worth the impatience for me as I keep trying to connect what’s happening in my inner life with what’s happening in the outer world. I still trust that the higher power can work through all of us even if I can’t always put it in words.
I try not to use too many religious words in my Caring bridge posts because I know that language doesn’t connect with everyone I care about. But if I don’t try to express that higher power, then I’m not expressing with integrity the truth of my experience where known and unknown can play together. I believe that this higher power can live beyond us -- in relationships.
After my difficult night last week, Jenny noticed a bulge of spinal fluid under the skin in one of my surgery scar areas when she was shaving my head to get ready for the Optune device. Jenny often notices the thing that’s needed. We went to the surgeon’s office to check out the spinal fluid issue, and so far I don’t seem to have an infection. Hopefully this issue will resolve by itself.
This week I went by myself to a clinic I’ve been to many times at the U of M, but it took me an hour and a half going in circles around the university to find it. After my surgeries I have an impaired sense of direction. Thanks to Jenny’s reminders and the higher power, I did find it eventually and made it back home.
My doctors still understand that there are multiple areas of cancer in my brain, but it appears those cancers are sleepy right now. I’m enjoying that sleepiness. It’s surprising and silly how many times times I keep coming to the edge of life-threatening situations and then I’m relieved and joyful that I can still use my powers and abilities.
Last week as I was biking along the Minnesota River on a bike path, a deer that I’ve seen a few times before ran next to me along the path, ahead and parallel to me for awhile. The deer and I both didn’t need to say any words to each other, but we ran/biked next to each other. I tried to stay safely away from the deer, while we played together. The playfulness of the higher power.