Change of Plans

My coach just changed the play. He decided that going for the win with the Hail Mary pass is too risky, so he’s calling for a short slant pass to put us in better field goal position to play for the tie…

Yesterday my doctors told me that I can’t get on the experimental Car-T trial. The company that is running it decided that my lung capacity is too compromised, and that the risk of the treatment killing me is too great. The cancer has advanced in my lungs and also moved into some of my bones. The Car-T treatment causes in inflammation, and there would be a high chance I don’t have enough lung capacity to handle that. After having waited nine months for the opportunity to try this treatment, it’s pretty devastating to be told at the last minute that it won’t happen. Plus I’ve been off any treatment for the past three months in preparation for it.

The plan now is to take a combination of another chemo pill, Stivarga, and an immunotherapy infusion, Optivo. This treatment has worked in around 20% of patients, but with limited impact. Lower risk, lower return.

We’ve also begun conversations about end-of-life care. Hospice is coming to our home tomorrow. I want to have a plan in place and be ready when that time arrives. The truth is I’m doing poorly with a hard time breathing and general pain. I’ve lost 20 pounds and much of my mojo. The effects of the cancer have finally become evident. I’ve always been an optimist and focused on the possible, but losing this trial option is a major blow. It’s been a long eight years of unending treatments that have taken their collective toll.

There are some silver linings, however, that I am embracing. While the new plan will likely make me feel bad, it won’t be as bad as the trial. I won’t have to be in the hospital. My next few weeks should be better and I should have an opportunity to spend quality time with Betty, my kids, and close friends.

The biggest silver lining of all, something that makes me almost giddy, is that I should now be able to move Pippa into Santa Clara University next Thursday. Moving Henry and Sam into college was a big deal for me (not so much for them), and I’m thrilled to share this milestone with Pippa.

Realistically there may be no light at the end of this tunnel, but I’m still finding rays of light shining through cracks in the walls. I’m continuing to embrace each of them, one at a time, focusing on the next experience to come. First move Pippa into college, then time with Betty and friends in Big Sur, then Sam comes home for break, and then Thanksgiving. All the while visiting daily with friends, talking about what matters in life and, appreciating all with which I’ve been blessed.

Love,

Peter