CR 461: 40th Infusion, and blessings

Soon after my last infusion I flew to Utah for two weeks. I met my new grandson, Olie, who has gained a pound a week since birth. He's a tank. On Sunday, September 11, we gathered in the historic Ogden 4th Ward Chapel -- the same building where I used to attend stake conferences in the 1970's when I lived in Huntsville, and which now houses one of the Spanish-speaking wards in Ogden where my daughter and son-in-law worship -- for Olie's ritual name and blessing. In LDS congregations, gathering to give an infant a name and a blessing is a tradition that gathers together family and friends to share a joyous occasion. All the men come to the front of the congregation, form a large circle and support the baby and slowly bounce the child up and down while the father gives thanks to God for the new child, states the name, then gives a blessing reflecting the parental hopes and desires. It is one of the purest expressions of love and joy in mortal existence. To celebrate the arrival of child into a loving family, joined by the extended family and friends, is a wonderful way to experience the joy and rejoicing in our posterity.

A few days later we celebrated Rose's third birthday. In the morning, Chelsea and I went to Rose's preschool and watched as she had a little party with her little peeps. Later that evening, we had a low-key family party with a green theme, as she declared that was her favorite color. For much of the rest of my time there, I enjoyed reading books with Rose and Lily, or holding and feeding Olie. Being a grandpa is a great gig.

I also met with a couple of contractors as Jennifer and I further explored the idea of eventually relocating to Utah. We like the idea of building our retirement home where we can age in place. I've done a few sketches of floor plans and elevations. It's fun to think about things like that. At times I catch myself and wonder if I am being arrogant in acting like I might live long enough to do something like that. Usually I am able to settle into a place of gratitude for each day, but living one day at a time makes it hard to make plans. So we are tentatively making plans, and listening closely for God's laughter.

For now, it's all talk. We've decided we need to sell our lake house before we buy any other property. I have this thing about not having more than two mortgage payments at a time. It's unreasonable, but there it is. And so far no one has been willing to pony up the money to by our lake house. And eventually, we'd sell our primary home, but at the way things are going, it probably won't happen before 2018.

Meanwhile, I'm continuing with my clinical trial. Today is my 40th infusion. I'm still undecided whether to end my getting the drug at the two year mark next Spring. My current thinking is that the Nivolumab probably has done everything that it can do to my cancer. In all likelihood, most if not all of my cancer cells with the PD-L1 protein have been killed off by my body's immune system. If there are other cancer cells in my body with different mutations laying low, the drug isn't going to do anything about it. If the cancer comes back with the same PD-L1 protein, then resuming Opdivo (or Tecentriq) will kill those new cancer cells. If the new cancer has another tumor driver, then a checkpoint inhibitor will do nothing to stop it.

Chelsea thought that there might be a risk that the cancer would mutate during the period that I stopped taking the drug. She thought that such a risk might support the idea of continuing with Opdivo therapy, despite the absence of any detectable cancer. It's a good argument. I've done some research into that and asked my doctors about that. The short answer is that we don't know enough about whether mutation from a PD-L1 cancer to a non-PD-L1 cancer is a real risk or not. There mere chance that continuing with therapy could continue to suppress the risk of the cancer returning is a good argument to continuing with the therapy. But for how long? Forever? I don't know. Maybe when I move and can no longer drive to Hopkins every other week. Dr. Hahn says that I should not let the question of whether or not to continue with therapy drive decisions of whether to move or otherwise enjoy life. But the fact is, Opdivo has saved my life by stopping my metastatic cancer. In the absence of any evidence, it's hard to know when to stop taking a drug that has saved your life and might be continuing to save it.

I'm listening to Stairway to Heaven while typing this. Coincidence?