On Meeting Fellow GIST Mutants and Dancing in the Rain

Last week was a complete whirlwind in Washington, D.C., as our GIST entourage (myself, John, mom and dad) headed to the National Institute of Health (NIH) for their three day GIST clinic. This is a pretty exclusive clinic-- only 11 patients were accepted to be a part of it. I've obviously never met anyone else with GIST, better yet Wild Type GIST, so I felt excited/anxious to hear their stories.

John and I flew into DC a few days early to attend the wedding of my dear friend, college roommate and sorority sister, Tammy, and her beautiful bride, Becca. It was my first time wearing a wig, cocktail dress and heels since forever. I was really anxious I would get sick in DC after San Diego and Vegas but I did great at the wedding. It was amazing to see my friends celebrate their love and reconnect with other sorority sisters as well. I miss them so much, but its always picking up where we left off when we get together.

That's the very best part, I think--I always do my best when I'm surrounded by people I love.

We played tourist the next day, visiting all the sites in DC, walking a ton in the 90 degree humidity. I managed to stay hydrated and fed for the most part, but I was absolutely exhausted. The next day, my mom flew in and we celebrated the 4th of July on a dinner cruise, watching the fireworks over the National Mall and then dozens of other firework shows as we cruised the Potomac. It was a cool night and felt so good to be able to get out in fresh air. I just felt so relaxed for the first time in so long.

We started the NIH GIST clinic the next day. Dr. Lee Helman (one of the first GIST specialists) presented to the patients and their families. His presentation was overwhelming for me to say the very least. Some of the facts he presented:

• There are only 150 reported wild type GIST patients currently.
• Of the 150, only 30 reported cases are SDH-A deficient mutants like myself. 
• Most SDH-deficient mutants are germline, meaning their mutations were inherited from a parent
• If you are germline, cancer exists in every cell of your body, although it may not manifest as disease
• Even if you show no signs of disease, you're not in remission. GIST tumors can pop up whenever they damn well please, where ever they damn well please.
• There is no cure for wild type GIST. It is a life long, chronic disease that will require suppressive therapy 

This led me to have a bit of an emotional breakdown after the first meeting. Not a great start.

Facing mortality at 29 is one thing. 

Facing a life long battle against cancer, something that you feel has taken everything away from you, is another. 

Knowing that your parent and your siblings might potentially share this horrible illness is heart breaking.

Feeling like cancer is in every inch of your being is mind numbing.

Later in the evening, some patients went to dinner and shared their stories with me. Many of them presented in the ER with massive internal bleeding, leading to emergency, life saving surgeries that involved removing large sections of stomach, bowel or other organs. Some have no masses. Some take no chemotherapy. 

But they look healthy. They live their lives fairly normally. I look sick. I can't live my best life.

I couldn't help but wonder-- why did my hair turn white and fall out? Why does my abdomen protrude? Why am I so skinny? Why did they get their tumors removed but I'm inoperable? 

I know this is ridiculous because everyone has their own journey and their own struggles, just like I do (and I heard more about those later in the week). Why would I want massive internal bleeding? Why would I want emergency surgery? I'm confused by these feelings. I'm still working through them.

Thursday was a full day of testing and consultations at the hospital, my least favorite place to hang out. There were moments of levity throughout the day. Nice staff, good cafeteria food, getting to know staff from Life Raft and of course, my fellow mutants. During the genetic consult, they asked my parents if there was any chance they were related. If you know my family, we're a bit blended and quite "modern" in composition, so John and I were snickering away like 5 year olds when they asked this question. What a modern family plot twist that would be. My parents were not amused.

The day ended with a roundtable consultation with leading GIST experts. They didn't have all of my records to review, which was frustrating. The surgeon agreed that I am certainly inoperable, which was hard to hear again because I do get so uncomfortable and insecure about my protruding liver. They reviewed Dr. Sicklick's plan for me and agreed that it was innovative and customized for my case. NIH currently has one clinical trial that I would qualify for, but its a dosing trial, which means that its never really been tested on my mutation yet, so I'd need to fail off of 3 or more other therapies before I even look at the trial as an option. So basically, they didn't have all that much to say, but they wanted me to stay in touch and provided me their direct contact information for any updates or questions. 

When I left the room, I couldn't help but break down again, crying into John's arms. Why do I feel like I'm the only one who has no news, no options, no nothing? Just more talking and unanswered questions. I know I'm not alone. I logically understand that. But I can't help but feel so alone with this stupid disease sometimes. I can't help how I feel. 

Friday was more talking. I wasn't feeling that great so we left when the optional workshops started and went to eat at my favorite Thai restaurant from college before we flew home. That made me happy.

So, what does all of this mean for me a week later, now that I've rested and sorted through the week at NIH?

I cannot wait for the storm to pass. I must dance in the rain.

This is not going away. GIST is going to be a part of my life as long as I live. 

I cannot sit and wait for the day I feel perfect to go run errands, travel, eat the food I love, tell my friends and family the joy they bring to my life.

So, what now?

I get up. I do what I can until I cannot any more. I acknowledge that bad days will exist, but good ones will too. I will pray for a cure.

And until there is a cure, I will be a part of the GIST community. I joined Life Raft to be a GIST certified advocate. I signed up and began participating in the pediatric GIST listserv my parents have been trying to get me on since day 1. I added my fellow mutants on Facebook so I can keep in touch with people who are more like me than I thought. 

This is how I will dance in the rain, despite the fact the storm may never pass.