August 2022 update

It's been quite a summer, not what was expected. The bottom line is that my breathing is getting much harder and I'm on Oxygen almost all of the time. I can no longer walk more than a few slow steps.

Given how we've tried all the normal treatment regimens with limited success, my plan now is to try an experimental CAR-T treatment at UCSF in two weeks. The treatment pulls out a bunch of my white blood cells, sends them to a lab to get trained to target my cancer, and then they get re-injected into me to hopefully attack the rectal cancer in my lungs. This kind of CAR-T treatment has been successful for blood cancers but not really solid tumors. This specific approach has been tried once in China on 30 people, and half had a positive response. I will be the first person in the US to try it, and the risks are high. However, I'm out of other options. It's a hail mary pass, but sometimes that's what it takes. I remember how great it was watching, during my senior year in high school, in my basement, Doug Flutie connect with Gerard Phelan to lift BC over the dreaded Miami Hurricanes for the last second miracle win. Or how about the Miracle in the Meadowlands? Or when the NY Giants punted to Deshawn Jackson with no time left and he ran the ball back for the winning TD? Time for another one.

We've been trying to get this trial going for months, and it's taken longer than hoped, costing time. In the meantime, we've been doing the best to keep me strong enough and eligible for the trial. We had to stop chemo as part of the protocol two months ago. Two weeks ago I had the fluid around my heart drained again, and this time they inserted a mesh so the new fluid will drain directly into the lining of my lungs and be absorbed. That required a 3 night stay at UCSF. Now the biggest challenge is managing my back pain which varies from bad to intensely bad. I'm taking lots of Tylenol, some Advil and various amounts of more serious meds as needed. I have to sleep sitting up on my back because I can't breath lying down.

The treatment begins with a dose of chemo on Sept 12. I'm admitted to UCSF Parnassus on Sept 14, and the cells are injected on Sept 15. At that point, I expect a rough ride with significant consequences, and I'll be an in-patient for at least a week as they monitor me and manage the side affects. After that, who knows...

I've pulled back a lot from work this past month as my mindshare has shifted to breathing and living hour to hour. My brain speed has slowed considerably, and I just don't have the mental drive that I used to pride myself on. I'm focused on just hanging in there for the next couple of weeks. Fortunately the team at work is stepping up and keeping BGCP running forwards.

For the first time, I've had to cancel some trips. No Jamaica, Grand Canyon rafting, England and no more camping. I was able to squeeze in our annual trip to the Jersey Shore with the entire family, and that was wonderful.

The family is dealing with this situation as well as possible. Henry is living in SF, working in technical sales remotely, and visits every week. Sam is a senior at U of Richmond. Pippa begins her freshman year at Santa Clara on Sept 15. Betty is working as caregiver and mom and wife, doing an amazing job keeping me safe, fed, oxygenated and loved.

I still take great pleasure in time with family in friends. Thank you to all of you who have shared your time with me.

With love,

Peter