Nuances of a New Normal
By David Weinstein
“Support was next to me and also on my knee,” said David seen here, with his son and transplant nurse.
Papers signed, invitation to move into University of California, San Francisco (UCSF), 11th floor oncology accepted, bag packed. Drop off my son at school and I’m on my way.
This was an act of blind faith. I asked detailed questions of everyone involved to this point, and always had someone with me who was less caught up in the emotions and drama, to take notes and be my ears. The detail I wanted and was able to understand was not forthcoming. I think many of the practitioners I encountered were under the false impression that patients cannot comprehend or do not want to grasp anything beyond the basic synopsis. It will hurt. It will not hurt.
I want all the details, in blunt, graphic clarity. Repeatedly. Ultimately, this became an understanding between my caregivers and me. It is my body, my life and my process to engage in as deeply and completely as I choose.
This first stay at UCSF was to be for five weeks. I quickly learned that one of the aspects of being treated at a teaching hospital is that you are often the subject for teaching. I also discovered that if an intern was learning to insert a line into a large vein in my groin and they messed it up twice, I could ask them to stop and watch the supervising physician do it properly.
It is critical to point out here that the grace and dignity shown by all involved was never lacking. I was surprised at just how much empathy was expressed by the nervous interns who knew they were learning on my body. The amazing nursing staff understood as well. Humor is a great pacifier and equalizer.
Temporary port installed. Apheresis machine hooked up and we are ready for two days of blood cleaning. I felt like a set of hydraulic brakes being bled. Hours of sitting around connected to the machine talking with whoever was running the operation.
My genetic sequencing had not been done yet so a true diagnosis was about two weeks away. We knew that regardless of the details in the diagnosis, cleaner blood was a life-saving necessity, as would be the chemotherapy and full-body radiation, to arrest all of the cancer activity and allow for a bone marrow transplant (BMT).
Once apheresis was complete, I received a long-term tri-port in my chest. This was a gift because one’s veins quickly learned to hide from incoming syringes.
When I considered the source of my greatest fear and concern about the parts of the protocol I was beginning to experience, issues related to my lungs and breathing were absolutely at the top of the list. In part, it was because I’ve always been an athlete and well-tuned to my breathing and its limits. I knew I was going to spend 45 minutes each day for two weeks in a hammock, hanging in a concrete and lead covered subterranean room, being bombarded by invisible waves designed to destroy living cells. This process was not aimed at a specific tumor. I was the tumor. They were going to radiate all of me.
I needed to remove my psychic resistance to the effects and quell my fears as much as possible so some kind of optimistic view could help allow a positive outcome. What benefit could there be to fight this tool that is designed to help me live?
So I named the radiation machine. I gave the radio waves a color and a personality. I made friends with it. I greeted it when we met every day. I thanked it when we were done. This tactic was facilitated by visual imagery.
Goofy? You bet. Maybe a bit too tie dye/Birkenstock for some people? Sure. But it worked and the anxiety dissipated. When I was not having my daily encounters with the radiotherapy machine, I was receiving intravenous chemotherapy. Initially there were no side effects from either. But after a few days accumulated, that changed radically. Thank science for strong and then stronger pain medications.
More on that reality and the latest in recommended hospital room decor in the next BLOG.
Editor’s Note: If you would like to reach out to David after reading this blog, you may contact him at Daweinstein@sbcglobal.net