Back in October I did a reading of my blogs at Coffee Underground.
It was a really fun night, and I’m planning on doing more in the new year. #staytuned. People laughed. People cried. Kind of. And after the show was over I crumpled into the passenger seat of Jaimie’s car and could not stop coughing.
I was coughing as we drove down Coffee Street. I was coughing as we drove down Church Street. We stopped to get gas at the Circle K and I still I was coughing. I coughed all the way to freaking Anderson when I finally put the hood up on my sweatshirt and sat perfectly still while the NyQuill started to run its course.
The reason we were in the car in Anderson and not in bed was because we were driving to Atlanta so I could start a clinical trial. The trial is called The Mountaineer, run by a laboratory out of Seattle. They are only offering it two places in the Southeast- Duke and Emory- ergo we were on our way to Atlanta.
I was nervous. By definition a clinical trial is medicine that not many humans have taken. This drug was in phase two, which means that while I may be past the “Let’s hope this doesn’t fuck people up” stage, it’s still early days. It’s nerve wracking taking a medicine that has yet to be approved by the FDA. That says “Study Drug” on the bag.
But the real reason I was nervous is because I wasn’t sure how I was going to be able to do Every Brilliant Thing.
I had shared this fear with one of my doctors. He assured me there were things he could prescribe if it came to that. Things that might not be great for me long term, but would knock the cough out and let me do the show. It was nice to know that I had that in my back pocket. I wasn’t sure how I was going to perform while raging out on steroids, but still, I was glad I had the option.
The trial is two drugs. The first is Herceptin. Herceptin is a type of immunotherapy that works on the HER-2 mutation common in breast cancer patients. Since about 10% of colon cancer patients also have HER-2, me being on of them, they are seeing if it works on us as well.
The new drug, the one that is not yet by the FDA, is called Tucatnib. I take six Tucatnib pills twice a day, once in the morning and once at night. The drugs have very little side effects. It’s caused some dry skin, so last night I did a mask and everything appears to be fine.
I decided I wasn’t going to give myself a time line of when I was going to feel better. I’d just let it happen when it happened. A week later I was walking up the stairs and what do you know, I didn’t collapse in a chair when I got to the top! Then I noticed that when I was on the couch watching television at night, I wasn’t coughing so much.
I started rehearsing Every Brilliant Thing on my own. I would go to the Treehouse Studio at Furman, set up chairs, and try to figure the thing out. I was re-learning how to breathe without expanding my lungs. I was navigating the more active passages of the show, learning when I could catch my breath without it looking weird. When we officially started rehearsals Rick, my incredible director, found ways that I could mentally approach certain sections to achieve the moments we had built before without getting over worked.
And this weekend the play opened. Friends who saw the piece and know what’s been going on said they never saw me struggling. I’ve been able to do the show just as we did it last year.
Yesterday we did a talk back. The woman facilitating asked people what Brilliant Thing they would add to the list.
We have major issues in our health care system. The fact that any people, including ones with insurance, go bankrupt getting medical care is a collective moral failing.
That being said- medicine is a brilliant thing. I am so grateful for the people who give their lives trying to figure out how to stop this strange thing so many of us have. Because of them I’m not only alive, but I’m able to still do the things I love.
So. #1,232,242- Medicine. And the people who make it.