Feeling Fragile

Since 2020 started, I've been hospitalized twice after going for a little over two (2) years without having to be admitted. In January 2020, I had a migraine that caused so much vomiting that I was hospitalized for four (4) days. In April of 2020, I had to be hospitalized again for basically the same thing, but I'd gotten to the hospital earlier in the cycle this time and only had to spend one night. Also, they didn't want to keep me one millisecond longer than I actually had to be there because I'm immunocompromised again.

At 41 years old, being hospitalized for having a migraine and intractable (this means it didn't stop) vomiting, was a profoundly humbling experience. Despite the fact that I will soon reach the third anniversary of being diagnosed with stage IV metastatic breast cancer, I still react as if I'm healthy. I still often forget to take my supportive medication (like something for nausea) because when I'm feeling pretty good, I feel as though I'm still healthy.

But I'm not.

Metastatic breast cancer medication regimen

The new medication regimen I'm on has been pretty toxic to my body and I'm crossing my fingers that it's working. That would be the best justification for how badly I often feel and how much work it's been to manage my quality of life. However, I know that there aren't any guarantees and just because the science makes sense doesn't mean that my cells, my body, my systems, will react as anticipated.

While I'm not participating in a trial right now, my medical oncologist and I agreed to try a regimen that we came up with as an experiment. I did have a few other options when my last PET showed the Piqray isn't working as well, but we want to get as much mileage out of Piqray and since my first PET did show a partial response, we decided to add medication rather than changing things up. The medication we've added is in a class of medication that worked for me previously and we're hoping that the combination and targeting multiple pathways could be key.

Tumor markers

We don't know yet if it is working the way we hope, but the rise of my tumor markers has plateaued. For me, tumor markers have been a good leading indicator when a medication is working or not working as well. My medical oncologist reminds me regularly that I shouldn't get too hung up on the patterns but I still follow it closely.

Perhaps I'll wrap my head around the fact that I'm vulnerable, that I'm fragile, that I'm not invincible, at some point. I also sometimes react with anger at this thought one more thing that MBC is taking from me! One more thing that isn't the same.  One more thing that makes me dependent on others. I deal with this better some days than others.

How have you assimilated the trappings of new experiences?

Have you been slow to accept certain ramifications of MBC than others?

Would you participate in a trial or an experiment of one?  Why or why not?