Hello, friends. Peter is not able to communicate with the outside world as often as he used to and has agreed that we should let people know how he is doing. So …
Things Peter is doing: visiting with friends as often as possible, napping, allowing dogs in bed, demanding brownies/cookies/ice cream/morphine/bourbon (depending on his mood), enjoying sitting naked in the backyard after his morning shower.
Things Peter is not doing: training for a marathon, driving, his share of the laundry and housework, reading and writing emails and texts, posting on Facebook.
Background: Peter was initially diagnosed with glioblastoma multiforme grade IV in February 2016. It’s the most aggressive and frequently diagnosed malignant brain tumor and generally affects men over fifty. It is incurable. This is the same disease with which Senator John McCain was recently diagnosed. It was also the cause of death for Senator Ted Kennedy and Beau Biden, son of former Vice-President Joe Biden. Also, Tugg McGraw and at least seven other professional baseball players, oddly enough. (Peter has never been involved in politics or baseball). We were told that people can expect to live 12-15 months after diagnosis. That was 30 months ago. Peter has never been one to follow the rules.
Where we are now: Peter had two awake craniotomies (that means exactly what it sounds like), radiation, chemotherapies, and participated in an immunotherapy clinical trial. As you may know, he has been confined to a wheelchair for several months after he could no longer feel or use the left side of his body. He decided to enter hospice care about five weeks ago. That basically means we stopped making and attending doctor’s appointments and scouring the internet for clinical trials and other miracles and agreed to chill out and have a nurse visit a few times a week instead. His many medications (controlling blood pressure, preventing blood clots, eliminating likelihood of seizures, blocking pain, encouraging bowel activity, etc.) arrive almost daily via FedEx, which eliminates the frequent Walgreens trips. More care will be available when we need it. Our family has adopted a wonderful (and very strong) nursing student named David who comes every morning to help Peter start his day. He has been indispensable.
I guess hospice nurses are used to somber quiet households. Ours – not so much. Our home is generally a whirlwind of activity. Both Macy (on summer hiatus from Miami-Dade College) and Eli (who recently graduated from high school and will attend Florida State University this fall) are living with us this summer. My brother John (who lives in a school bus in our side yard) has been an absolute superhero in this journey. And then there are our three black dogs. Bono is the old dog. Phoebe is the pretty dog. Shaggy is the giant dog we didn’t mean to adopt who never leaves Peter’s side. There’s a lot of dog here.
Peter spends as much time as possible in his happy place, our backyard that overlooks a serene lake. He is not deterred by summer rains or summer heat. Because he is most alert and engaged in the mornings, he has frequent breakfast guests, including both our pastors, who have apparently gotten used to finding him enjoying the morning in his birthday suit.
Peter continues to attend adult ed (this week: meditation for people who don’t like to meditate) and church on Sundays. We rented a specially-equipped van that allows us to transport him in his wheelchair, so we occasionally get to a restaurant or our beach cabana at Crandon. So he is not always a patient. But sometimes he needs morphine to control his pain. And sometimes he sleeps 18 hours straight.
So every day at our house is different, and generally it is impossible today to plan for tomorrow.
We have been blessed by a wonderful community of family and friends. Thanks to the bakers and the pray-ers and the visitors and the texters and the huggers and everyone else. Thanks to everyone who has signed up for the online meal train and kept us well-nourished with curries and calzones and chicken. And brisket and banana bread and bagels. And freshly-caught fish and French fries and falafel. And of course, malbec and merlot. I looked for a catchy quote about food to include here and was intrigued by “There is no WE in Food.” I’m not sure what that means but it has definitely not been the case at our house over the past few months. Food really is the universal language of love, and we do feel the love.
So I promise to post occasional updates here. Peter has just heard and approved this message (see photo).