Today was a bit of a zoo. It was a frenzy of appointments, waiting for more appointments, meeting new doctors, genetics specialists, and nurses. But it’s finally done, and we finally have a game plan.
I first met with Dr. Slopis, who is a neurologist. He gave yet another exam on hearing, vision, etc., then walked me through my MRIs to discuss areas of concern, and how surgery and radiation could affect those areas. He also questioned me on any symptoms that I’ve been having. We discussed my seizures, my memory loss and other possible issues and how they work in the brain, and how the Trilepol that I’m currently taking is largely controlling those.
Next was a radiologist whose name I’m currently blanking on. She was there to help me understand the pros and cons of radiation… proton beam radiation vs. standard radiation. Proton beam radiation is much more precise in the area it radiates. This is generally a good thing, but in my case the edges of the tumor aren’t well defined so it may be hard to perfectly map the radiated zone. Still, she recommends proton vs. standard in my case. It’s much safer, especially considering the likelihood of me having Li-Fraumeni.
In between appointments we were greeted by a genetics nurse who asked us if we were willing to take part in a large study on my history. I’m not sure how much of the details I can give on it are, so I’ll just say it seems rather extensive, and I look forward to receiving some of the details on it in the future.
Finally, we met with Dr. Wolff for my exit meeting. While mom and I had lunch he met with this team of doctors I had been seeing for the previous three days. They discussed their varying opinions and came to a common ground on their recommended approach to treatment. Just hearing those words gave me a bit of comfort, even though any of the options is scary to me.
The best approach, from Dr. Wolff speaking on behalf of the entire team, is to start with surgery in the very near future to remove some of the bulk of the tumor. Prior to that I will have an MRI mapping done to monitor where my speech and motor skills come from in my brain to help the surgeon make more precise judgments on where to cut. I will be awake during the surgery and will be asked to speak and move various parts of my body so they can monitor me for any motor/speech loss. And if everything goes well, I could be in the hospital for as few as 3-4 days.
A few weeks after surgery, I will begin radiation therapy. This will be a six week process, with me living in Houston for daily therapy Monday-Friday.
Depending on the pathology reports from the removed tumor, they may also start me on a chemotherapy program. Should the tumor be a more advance grade than what is currently thought, an oral chemo plan would be added to the mix. It sounds like this is something I would just do at home.
It’s a lot to take in, and we haven’t scheduled the surgery yet. I needed the time to talk through this with my family. But I already know in my heart that it’s the only option. And so on Monday I’ll begin that process.
For now, I’m going to spend a few weeks living life to the fullest, seeing as many of you as I can, and thanking you all for the wonderful comments you’ve left, the amazing emails you’ve sent, and the inspiring conversations we’ve had.