I don't feel brave today.

It has been a while since I last updated, mostly because there hasn't been a whole ton going on since early July and somewhat because I've had trouble formulating my feelings into something cohesive. I feel so many things-- sad, confused, like I want to advocate, like I want to crawl in a hole and die...it comes in waves and sometimes they pass. At the end of the day, I am terrified every single moment, no matter how hard I try to distract myself.

There's been a lot of waiting, which is super great for my anxiety obviously. John and I spent most of July and August traveling. After we returned from NIH, my mom and I spent several days in San Diego at a GIST Day of Learning and having some additional testing done. A few days later, John and I set off for a month long trip to the Midwest to hide from the Phoenix heat. We spent time with family and friends in Chicago, visited our "adopted" Penguin at the Shedd Aquarium and went to Door County for a week with my dad, stepmom and siblings. For the most part, I ate really well, had good energy and enjoyed myself. Last weekend, we headed back to San Diego for John's cousins' beautiful wedding in Temecula, followed by more tests and appointments, before we flew home. SO happy to be back home with my kitties and my mom-- I missed them dearly.

Us with the siblings in Door County, Wisconsin.

Enjoying a beautiful wedding in Temecula

John and I went to Dr. Sicklick for my 8 week follow up appointment on Monday before we flew home. While we don't have a final report yet, it appears that Sutent is no longer helping me and there are more "hot spots" meaning metabolic cancer growth in my tumors. This is heart wrenching news. I cannot understand how I can look better, feel better, eat better, have better lab results and still...be getting worse. Loosing more agency of my body everyday to GIST. 

They want me to enter a clinical trial with a drug that is not FDA approved for GIST, but rather brain cancer. There have been some positive preliminary results from people with advanced wildtype GIST, but its a more traditional chemo, which means I will get sicker again. The side effects are brutal to say the least. I don't know if this is the right choice, but I am running low on options right now.

It doesn't make any sense to me. How can I be getting worse? Why is this happening to me? Can I ever just get a break? I'm starting to feel like God is punishing and unrelentless. Or maybe there is no God at all? I'm not a bad person. I'm 29. I want to live. I have so much life left to live. I don't want to die.

I'm trying to keep my mind busy with errands, homework, chores and such, but really, I want to lay in bed, take oxycodone and sleep until this all goes away. But it isn't ever going away-- this is my life for the rest of my life. I am terrified. I am devastated. 

Today, I don't feel brave. I don't feel like fighting. I'm so angry and sad-- I don't know what to do with myself. I avoided my support group this week because I couldn't bring myself to talk about what's happening. I've been crying every time I have to talk about it, which I haven't done in months. It is difficult to talk to doctors about it, better yet my friends and family. 

I feel like I'm back at day one all over again and I have no idea what to do next. 

I don't feel like being brave today.