A Plan Emerges
This post was originally published on Corrina’s Caringbridge site:
https://www.caringbridge.org/visit/corrina
The past week has been spent exploring and vetting second (and third and fourth) opinions.
Although we have one more doctor to meet with, we now feel like we have a defined plan that will vary only slightly based on our final choice of oncologist.
First, let me say it publicly (deep breath)...Corrina’s official diagnosis is Grade IV glioblastoma multiforme.
Ok. Now that that's established...
Surgery has been ruled out based on a variety of factors including a risk/benefit analysis, mismatch or timing of clinical trials, and the fact that we need to get Corrina going on a treatment plan ASAP. That’s the overwhelming lesson we’re hearing from UConn, Duke, Yale, other medical professionals, and Corrina herself.
Corrina undergoing radiation, 5 days/week for 6 weeks
Based on urgency and the uniformity of message, we decided not to pursue second opinions at Dana Farber or Sloan-Kettering. We have one final doctor to meet with on Tuesday - Dr. Vredenburgh of St. Francis in Hartford, who, barring unforeseen incompatibility, will be our choice of oncologist moving forward. Dr. Vredenburgh comes highly recommended from both personal contacts and Yale neurosurgeons based on his long term neuro-oncology and brain tumor specialties.
Unfortunately, UConn does not have a neuro-oncology department or official neuro- oncologist on staff. It seems like they recognize that gap and are ramping up their partnership with Duke University to account for it, but they're just not there yet. We're not going to risk putting Corrina's care into the hands of a generalist. We feel it is incredibly important specifically to have a neuro-oncologist on our team, so we anticipate splitting our approach to radiation and chemotherapy between two hospitals - moving quickly on radiation at UConn, while putting medicine management in the hands of Dr. Vredenburgh at St. Francis.
On Monday the 8th, Corrina will begin 6 weeks of outpatient radiation at UConn. She'll go in 5x/week for 6 weeks for outpatient treatment and, concurrently, she'll being a longer schedule of chemotherapy (Temador) administered at home.
On top of that, the recommendation is to introduce an additional drug, Avastin, soon after commencing the chemo, to fight the tumor even more aggressively than the basic standard of care.
Having a plan (almost) in place is giving us some semblance of stress relief. We have a long road ahead of us, but at least we're now at the starting line. The last 10 days or so have seen us scrambling to prepare. It's as if someone has forced us to compete in the toughest competition on the planet as quickly as possible and against our will.
It goes something like this...
Life: "I've just registered you for several back-to-back Ironman Triathalons, followed by an Ultramarathon, Navy Seal training, and an ascent of Everest."
Us: "Why? We didn't ask for this."
Life: "I don't care"
Us: "But, we know nothing about these challenges. We don't know how to perform. How do you even train?"
Life: "Figure it out."
Us: "Can we have some time to figure out a plan?"
Life: "The start time is up to you, but the longer you wait, the harder it is."
PAUSE; let it sink in. Push down the shock, fear, and natural resistance. Scramble to find the best coaches you can. Luckily, we have access...
Us: "Challenge accepted."
We'll need all of your help over these next few months and the hundreds of miles ahead. There will be huge inclines, downhills through which we gain momentum, straightaways, then flat tires, creeping doubt, overwhelming tears, then the spark of resilience which will turn into the fire of perseverance. Corrina is blessed with an enormous amount of personal physical and emotional strength. No one is better suited for this unwanted to challenge. We are all running right beside her to provide direct support.
Let's do this.
