Not too much in the way of treatment has happened since the last time I’ve written. Most of the time I’ve been pretty bored. I work out everyday, spend a lot of time on the phone with my insurance company, and I try to read as much as I can. Embarrassingly, I discovered an Oregon Trail game on my phone and nostalgia has me playing it like I’m in the 5th grade computer lab all over again but that’s between you all and me. No one else needs to know..
(Brookeville Beer Farm with family and friends that are like family)
I have been catching up on some important time with friends and family which is a different kind of treatment.
(Ava, Chloe and I)
(My cousin Heather, and my god daughter Ava, and Chloe).
Part of the hold up with starting treatment was the desire for a second opinion and confirmation that this upcoming IV chemotherapy is a good move. It’s a pretty big deal so I wanted more reassurance I was doing the right thing. With some research, I discovered NIH had a few brain Sarcoma related studies going on…what are the odds? Right? Turns out it is all thanks to Obama and Biden (I miss them). In 2016 Obama signed a 21st Century Cure Act which put 6.3 billion dollars into cancer research. This was Biden’s project in honor of his son Beau who died from brain cancer. The bill specifically put money aside for brain cancer research.
So like anyone else trying to get an appointment at NIH I feel like I moved heaven and earth to get this appointment which took way more time and a lot more stress than I anticipated but it was worth it.
Despite the multiple confused phone calls I got from various coordinators on getting my scans, notes, and pathology, when I got to NIH the doctors I met had my story down to a T. We discussed my story, their research, and my options. They gave me good news in that they are completely on board with my current treatment plan to get IV chemotherapy and would not recommend anything else at this point. Further, they think it’s very rare to find a Sarcoma expert like my medical oncologist and they trust him completely to pick the right regiment for me. I knew my doctor was good but to hear it from NIH and to hear them defer to his expertise was very reassuring for me especially because I met with the head of neuro oncology at NIH.
Additionally, they explained that because of the brain cancer research funding from the Cures Act, they are conducting a Natural History Study of 12 rare brain cancers. Brain Sarcomas just so happen to be one of them. So while I will not be getting treatment at NIH at this point (and hopefully never)…I’ll be followed by them and can always opt to get treatment there now that I am a part of study. All good news.
After the appointment on Thursday, Jeff and I left for a quick trip to Ohio to celebrate Jeff’s birthday, visit with his family, watch his brother graduate, and watch the O’s get smothered by the Indians …it was great to have some time to feel healthy and relaxed before everything starts and I’m so glad I wasn’t in the hospital for Jeff’s birthday so we could celebrate him.
And now (Monday) it’s back to reality.
Tomorrow I will get my port placed and in a week treatment can start. We have not sent out a schedule yet but Katie will as soon as we know the dates so stay tuned.