Rules are Rules…

We are two months into self-isolation and it’s very upsetting for me to witness Peggy standing at the living room window staring aimlessly into space with tears running down her cheeks.

It breaks my heart to see her like this.  I’ve thought very hard of how I can cheer her up.

I’ve even considered letting her in. But rules are rules.

Hey! Everyone should start an important communication with a little joke, and yes, that one has been around the World Wide Interweb several times, but it wears well. And with the punch in the gut we got yesterday I needed you chuckling while tears well up in my eyes as I write this.

Since my last post all of us have gotten, grudgingly, set in a routine, the month of March saw me driving to Proton Beam treatments at Johns Hopkins – Sibley. Also during March I went in for 3-1 week sessions of ifosfamide chemotherapy. The month of April saw me moving around the house with a fleece blanket wrapped around me because I could not wear pants. Nothing that had a waistline. What a visual that must be in your mind, Wayne & Garth are hurling somewhere, I’m sure. I looked like a Samoan Tulafale (Speaking Chief) due to the 2^nd Degree burns on my right abdomen from where the proton beam entered the body. The pain was, well, I’ve never had a baby so I can’t complain too much but it was more pain than I’ve ever experienced. Moving on…

Friday, I went for a full CT scan to see where we were. The news is mixed with the aforementioned punch in the gut. One abdominal tumor, the one attached to the bladder did shrink some. The other, larger one on my right side, “my little friend” actually grew a couple of centimeters. The tough news was the re-appearance of a tumor in the right lower lobe of my lung. It is small but nonetheless, a new beachhead has been established. I told Dr. B. on the telemedicine video conference that I was disappointed they didn’t want to punch another hole in my back to biopsy that little sucker. I refer you back to a post dated 06/15/2019, “Time to catch up on some cancer news…”

The next course of treatment, there is always a next one…until there isn’t one, has me taking an at-home chemo treatment in pill form, Votrient. It is FDA documented for sarcomas, and will prevent me having to come to Sibley for infusion treatments. There will be blood drawn every 2 weeks, and a diagnostic CT every 2 months. The NIH is so overwhelmed with COVID-19 work, they are not recruiting any candidates for any cancer studies, even if there were a study with which I matched. The type of sarcoma I have is so rare, research dollars do not flow towards it, all the important cancers get the study funds, which we understand it is fair & just…& sucks.

Dr. B. has several patients on Votrient that lead normal lives, work, travel (before COVID), etc. so we are looking forward to getting started.