Grief: the price you pay for love 

My mother-in-law, Pam, texted me yesterday to ask if Mike and I are doing okay. She acknowledged how difficult that question must be to answer right now. My response to her is below and provides context for the touching quote she shared with me in return. 

We are doing okay. Or at least I can say I’m doing okay. Don’t want to speak for Mike. Last week I was pretty emotional but it was good to see my brother over the weekend and I had a good day today. I’m making progress on my project, which feels great. Of course I think it’s healthy to grieve and mourn too. We’re both losing so much. We are just trying to strike the right balance between honoring those emotions and enjoying each other and the time we do have together. 

Grief is not a disorder, a disease, or a sign of weakness.

It is an emotional necessity, the price you pay for love. The only cure for grief is to grieve. 

– Dr. Earl A. Grollman

Breathe in peace. Breathe out joy.

I hadn’t planned to write a blog post today. It seemed like an expenditure of too much energy, something I have so little of these days. But you wonderful people have been so kind and supportive all these years and months. The least I can do is keep you in the loop through this final stretch.

It’s been a really tough week for me. I’m not sure whether it’s the steroid dose reduction (I’m now at 0.5mg every other day and can finally start to see my own face looking back at me from the mirror!) or the many stairs I climbed in Lake Arrowhead last weekend plus all the time spent sitting in the car, but I’ve been in a lot of pain — in my legs, arm and shoulder, especially. 

The rapidity with which I lost function in my left arm also has had me thinking a lot about the next phase in the progression of this disease. I feel like I don’t really even need MRIs at this point to tell me what my body is already telling me, and yesterday’s scan confirmed what I already knew: My tumor is growing fast. Short of an unprecedented response to the immunotherapy, which I started yesterday, my time is waning. 

I’ve shed a lot of tears over the past week as I’ve worked to stem the rising tide of panic thinking about how intolerable life will become without the ability to dress myself, walk, or perform other basic functions.

Fortunately, yesterday brought a little relief in this regard. My oncologist told me that moving forward with the End of Life Option Act (EOLOA) is not incompatible with continuing with the immunotherapy treatment. It will be a number of weeks until we’re able to determine whether the treatment is working and worth any side effects I begin to experience. In the meantime, however, it gives me great peace of mind to know that if I begin to decline more rapidly and/or experience intolerable pain/other symptoms, I’ll have the option to avoid prolonged suffering (both my own and that of those closest to me).

Mike and I watched an episode of the Netflix show Grace and Frankie yesterday while I got my infusions. A friend of Grace and Frankie’s, who has terminal cancer, throws a big party to celebrate her wonderful friendships and time on this earth, just before ending her life on her own terms. Her joie de vivre in her final moments is just what I hope to achieve, regardless of how the end comes for me. I plan to adopt her manta, too: Breathe in peace. Breathe out joy.

How can you help it when there are views like this to enjoy?

(None of which is to say that there won’t be lots more tears, as well. This dying business is not for the faint of heart.)

immunotherapy 

Aside

In a timely development for those interested in learning more about this leading-edge treatment, The New York Times is in the midst of publishing a series of articles about immunotherapy, starting with this one, which covers the basics. Links to the other articles in the series can be found within the story. 

What is Immunotherapy? The Basics on these Cancer Treatments

It seems like this has the potential to be the game-changer in cancer treatment I always hoped I’d be alive to see/benefit from. The version I’ll be receiving seems like a beta test: the crudest and most rudimentary iteration of what will ultimately become a precise and sophisticated science. Fascinating stuff!