The Great Weight has a ‘name’ and a ‘grade.’ This is good. Or would be, if it wasn’t the one that we had been hoping to avoid. My tumor is officially a Grade 4 Glioma, called a glioblastoma, which is the most aggressive brain cancer out there. With the feedback that Dr. Weingart provided throughout the process, this always felt like where everything was heading. I’ll admit some hope of other options crept in with the delays in the readout, but it was not to be.
Googling these things is scary, so it is important to remember just how different I am from the average patient in this situation. There are many resources online that I am working my way through, but Hopkins has a nice concise write-up here. Why yes – that is Dr. Weingart that is featured, and yes, that feels good. If you come across anything you feel is worth sharing please send it to me at rob.rex@gmail.com, I’ll read it all! but I lose track of the texts.
A Battle Plan
Now that we have a name, we also have a ‘playbook’ or plan of attack:
- Daily radiation and oral low-dose chemo for 6.5 weeks
- 5-6 month long cycles of 5 days per month of stronger chemo
- Regular MRIs to track progress
There are no guarantees with how bodies respond to these treatments, but my finely-tuned-dad-bod has handled everything smoothly so far and there is no reason to believe this will be any different. I will likely be tired, but yet again I am lucky that the radiation will focus on the area around my motor cord, not the more cognitive/personality-oriented parts of the brain.
Like a well-oiled machine, the Hopkins team is keeping moving – Dr. Weingart referred me to an Oncology lead – Dr. Stuart Grossman, Co-Director, Brain Cancer Research Program, Sidney Kimmel Cancer Center at Johns Hopkins, Professor of Oncology (very fancy title) and I am scheduled to meet with him this Thursday to come up with more specifics on when this all gets rolling.
No Half Measures & No Change in the Plan
I’ve always been a jump in with both feet kind of guy – if you’re going to do it, do it right.
Jenn put together a great picture book of the weekend 
Castle Hill Inn, Newport RI 
so young… 
great sailboat ride & crazy weather 
She said ‘Yes’
- I knew Jenn was the girl for me and was planning our engagement weekend in Newport RI less than 6 months after we met (and that was long distance with her in B’more and me in Boston so it counts as even less time. I hope our kids are more level-headed).
- I quit my job and launched Power Target less than 2-weeks after Jenn and I first discussed the idea.
- Once you have one kid and jump into the parenting game, it is already 100% their life not yours – so we figured we might as well go all the way and have 4.
Those are three of the most rewarding journeys in my life to date and they had a lot in common. In each case, I ‘kinda’ knew what I was doing, had a plan of attack but knew that plan would change quickly as I learned, had a few role models and advisors to bounce ideas off, and most importantly had Jenn, my family, and a village around me that formed a foundation that I felt totally confident using as a base to step out into the unknown. A base that solid provides the confidence to tackle any challenge with a clear head and your chin up.
This newest journey isn’t exactly the same as the first three, but there are many similarities, and I keep coming back to the same place that left me confident heading into those first three adventures. NO ONE is better set up to tackle this than me. I have Jenn, the greatest doctors in the world, and the greatest team in my corner, so even with this news, nothing really changes – just stay on target. I get my body strong, I follow the doctors’ lead on treatment while researching all of the amazing advancements and trials to consider, and I tackle each medical step one at a time as they come at me.