Every time I purchase any type of lottery drawing ticket I plan what I’ll do with the prize. The odds are always stacked against actually winning – I know this – but the hope is still there. There’s always the letdown after not winning – even though the odds…

The first year after diagnosis was busy with recovery from surgery, getting into the routine of a monthly shot and periodic scans. The second year had super fun GI issues ultimately leading to my 4 radiation treatments. The tumors had started acting up so the radiation was hopefully going to put them in their place. It was another busy year with medical appointments and treatments as my second FT job.

The final radiation dose was in the early part of this year. Since then there have been a couple monitoring scans while waiting for the big diagnostic Dotatate PET scan. This scan will light up any existing tumors and let PET scan reader people clearly see what’s there still. This had to be ~9 months after the last treatment to give the radiation enough time to finish doing tumor damage.

So the waiting began in February and ended mid-October. In between these events there were 2 CT scans just to monitor but they are not as clear as a PET. The CT scans showed the tumor in my liver as shrinking, then not visible. Other changes seemed to indicate positive results from the treatment. So the hope started building. When I looked I could find stories of the treatment getting rid of all signs of NETs in some people – more hope. I fully know it will never be gone, I’ll never be NED, but hoped a lot during that time.

PET results — liver tumor is gone, most others shrank a tiny bit or at least didn’t grow, no new tumors are there = stability. This is my goal now. My oncologist, quite happy with the treatment results, was surprised at my not so joyous reaction. I can’t shake the disappointment in not winning the prize of NED. This is the first time I’ve really faced the permanency of my NET diagnosis – I was either too busy or too hopeful before this.

This situation knocked me flat – I’m still not functioning well. The mental game of all this has always been the struggle part for me. I’m having a harder time pulling myself out of this spiral. It’s affecting more of my life than the NETs themselves. I can’t adult… and feel like a burden to those around me when I’m in this state.

I would REALLY like my mind to be as stable as my scans!