I typically start my updates with the type of testing they do on me, so the doctor has time to evaluate it for critical markers in the blood and indications on the images. Well, there is no testing. No more CT scans. No more blood drawls. As I mentioned in my last update, all standard treatment plans have also been exhausted. In the 15-plus years since I was diagnosed with Neuroendocrine Tumors of the Thymus, I have managed to try every form of treatment available, including two clinical trials. Some forms of treatment were fairly easy, and some forms were outright brutal, but each treatment bought me another block of time which extended my life. I knew that day would come when I ran out of options, but it is no less shocking when it does.

I was hospitalized again in late December of 2023. I was going into another pain crisis that was bad enough to cause intractable vomiting before I even left home. This time the pain was worse than anything I have ever felt in my life. I could not sit still. I had finally reached a 10 on the pain scale! I did not even think a 10 was possible! I thought you just passed out or could not remember a 10. Well, you can…I just stood there shaking and screaming, begging for the nurse to make it stop. The whole time it was telling me one thing…the cancer was advancing.

The problem now is that not even the hospital can control what is happening. They had already given me a truckload of narcotics, NSAIDs, steroids, muscle relaxants and hallucinogens, without even touching this pain. What would happen if they couldn’t control it next time?

Eventually, they gave me so many drugs, my body was struggling to process them. I became unresponsive for 12 hours.

My family was flown in at the last minute. At one point during this hospitalization my breathing rate dropped to three breaths per minute. All this pain, slowed breathing, and an episode of flash pulmonary edema, along with a few other symptoms changed my prognosis from one year to less than 6 months. My palliative care team had no other choice than to recommend I sign up for hospice care. It was a shock to hear their recommendation because by the time they told me, I was feeling better and certainly did not feel like I belonged on hospice. The doctors at UC Health and especially palliative care have always looked out for what is best for my health whether I wanted to hear it or not. The news about signing up for hospice comes in waves, the same as the pain does. I know it will hit me again and there is nothing I can do to stop it. I am no longer sad, I am no longer shocked, if anything I am indifferent. I will deal with this the same way I dealt with the initial diagnosis, as something to beat. Until the next update, Just Keep Moving. JUKEMO

KG

: They even filled my pain pump with snail venom! See attached picture provided by Sonja.