Bad Assumptions

Before reading this, please know that all is well. I’m still ‘stable and unremarkable’ so no cause for concern. But I learned some interesting stuff yesterday so I’m sharing.

I had my quarterly scans on 8/19 and the results I saw on the portal concerned me as it read like I have extensive active disease, but then ended with ‘no change since the may scans’ so how is it so bad now? I decided to stay quiet and wait until my appointment on Monday. 

Normally I speak to the doctor after a scan, but this time I met with the PA who walked in the room and said ‘ your scans were good’ in a chipper voice. I told her I didn’t think so and started asking questions. The doctor told me that often scar tissue looks the same as disease and that there was 1 active tumor they were watching in my liver. The response of the PA was that active is defined differently. They consider a tumor active if it is doing something like growing. That is not my definition of active. If it is not active, it should be dead in my world. So that was sobering. I need to be more assertive to make sure I really understand the results of my scans.

Then I handed her my ‘do not resuscitate’ form. Again, no worries… this is just to have on file. She said she agreed with my decision not to be intubated because they typically do not extubate someone in my situation. Yikes!! So intubation equals vegetable until death? No thanks. That might explain why the doctor was so concerned with my first hospitalization when my oxygen levels were so low. I didn’t understand the issue at the time. So now I’m really glad I refused intubation then and now I’ll never be intubated.

This whole situation is as much mental as it is physical. I really need to keep my head in check and not think about it. I try to fill my mind with visions of hiking and sitting on the beach.