The weight of my recent MRI news is slowly and intermittently sinking in. Since the cancer has crossed into the left hemisphere of my brain, with significant growth on the left side, there is a new scale of concern, different from the other times of growth on previous MRIs. In talking with my doctors this past week about the MRI, both my optimistic doctor/friend, Peter and my oncologist repeatedly, and compassionately, used the word “bad” to describe the results.
The news is prompting me to do things like review all our financial accounts with Jenny, write a draft of my obituary, and consider what I need to say to specific people in my life.
I still believe in both continued miracles and also realistic acknowledgement. I know that dying in the coming months is a very real possibility, and I also believe living decades more isn’t out of the question. In any case, I know my language abilities are at risk. I’ve been crying more after this news, more than other hard MRIs. The sadness is interspersed with joy and awe too. I just got back from a very joyful hike with my family.
Yesterday, I did a functional MRI, where I moved my right hand and foot, to see which parts of my brain lit up in the scan when I did those things. I also completed sentences like “Little Bo Peep has lost her_____,” thought of different words that started with the letter A, and brainstormed things you can do with a ball--all to see which parts of my brain are used for these functions, to know where I might lose these functions in a surgery. On Monday, we meet with the surgeon to decide if and when I will have surgery.
I love the story from my friend, Brenda Hartman, of going into the woods to prepare to die from her stage 4 cancer, and coming out of the woods with unexpected physical healing. I want to follow Brenda’s example of opening up to both death and life, trusting the healing that comes.
I think of preparing to die as similar to how, as a society, we can use remaining fossil fuels to build sustainable energy infrastructure that can be used as we phase out fossil fuels. I have mental and verbal abilities now that I won’t have at some point. How can I use those abilities now to live in the fullness of the reality of love, in ways that make a hospitable space to receive grace for me and those around me in both dying and healing while alive? I know I can’t control it, but I believe I can influence how I relate to it.
Atul Gawande says that patients tend to lose their happiness when they are no longer getting to be the shapers of their own story. As I look backwards and forwards at my story, I’m seeking to shape my story by asking myself questions like:
Is what I came here to contribute released into the world? What nurture does it need? What is it time to let go of and to assert?
What gifts and challenges are mine to receive now?
What do I need to protect myself from, to make space for what is essential?
How can the pain and connection that crumbles my normal self and relationships allow the radiance of love to come through those cracks?
How can I lighten up about my own mortality and enjoy the ride?
What support do I need to loosen my expectations of the right way to die, heal, and live?
I know that part of the urge behind these questions for me is my ego, grasping to stay around after my body dies--but I also think it is a call to be true to my parts of the whole I belong to, in my family, communities, and ecosystems
A few years ago, my wise friend, Anne, teased me about how I was trying to control how I surrendered, which is ironic. I’m certainly trying to do that again, but my mind tends to always be doing projects, and seeking to design and collaborate on a good way through terminal illness helps me navigate and chill out on this part of the slide. My plans might all be illusions, but they help me lean into the ride. As a bumper sticker says: Jesus is coming. Look busy.
A $30 donation powers a site like Michael's for one month. Help keep CaringBridge online for them and for you.
Keep In Touch
Tips on supporting a friend in tough times through stories, articles, videos and more.