September 23, 2022 update

Friends and family,

I began the immunotherapy and chemotherapy last Monday. The insurance company tried to deny it at first, but thanks to the herculean effort of several amazing Team BGCP members, we were able to connect directly to the CEOs of Anthem, Merck and Stanford and make it happen. However, the results haven't been as hoped. I immediately started feeling worse with new pains and most importantly difficulty breathing with any movement. I've become mostly immobile. Walking is almost impossible, and even washing myself in the shower is exhausting.

So on Friday I consulted with my doctors to weigh the options of continuing this treatment or moving to end of life care with hospice. The advantage of focusing on end of life care is that I can take steroids which are certain to improve my breathing and energy for the short term, improving quality of life. The disadvantage is that the steroids eliminate any chance of slowing the cancer's progression. Hospice has always advised that I'll know when it's time. Given that the chemo/immunotherapy's chance of impact is so low, and the pain so much greater, we decided to go the end of life route.

I began the steroids on Saturday and am feeling better. I'm still immobile but in less discomfort. I now spend my time in five places where I can relax or visit: a comfortable hospital bed in our bedroom; our conservatory, with a view outside, surrounded by beautiful plants and fresh air; a Jersey Shore wooden rocking chair outside under our pergola, covered in ivy, grape vines and roses and visited by hummingbirds; in my backyard under the redwood trees surrounded by Betty's magnificent garden; or in our beautiful wood paneled living room in my recliner. If you have to be limited to one place, this is as good as it gets.

We have staff and volunteers from hospice coming regularly, and they have been attentive, very helpful. I'm waking up every three hours to take morphine, so sleep has been limited short stretches and replaced with very long times in bed. It's incredibly hard on Betty, having to get up so often and listen to any noise that may signal trouble. We're working with hospice to get night help. We have around 15 medications I'm taking, and the workload of tracking everything is insane. We even had to engage friend today to create a spreadsheet for us to track. Thank goodness Betty is exceptionally talented at all of this, able to track all the comings and goings without dropping any balls. And thanks to so many friends who have helped by dealing with insurance and doctors, bringing fresh groceries, cooking meals, sitting quietly with me so I can get some things done and Betty can play soccer, and visiting to reminisce about old times, life, and the future.

This weekend I was blessed to have my parents and brother and sister all visit. Henry returned from homecoming at Purdue a day early, and Sam came home from Richmond.

My goal remains to be at peace with this situation for me, my family, my BGCP community. I have mostly pulled back from BGCP with confidence and pride that the community we have built over the past twenty years is prepared to step in and continue our important mission. I hope my family finds peace in the great times we've had together. Of course we wish it were longer, but we loved each other and spent time with each other while we could. I'm blessed to have them home during this time. Everything is hour to hour.

I don't know if I'll write another post. If not, a friend will post information about a service on this website.

Love,

Peter