Wow, really? You just want to jump to… OK. Let’s do this. Who, What, Where, When, Why.
Who – Rob Rex, that’s who
I am a 41-year-old marketing professional and entrepreneur that up until ~2 weeks before the launch of this blog was enjoying a nice quiet life in suburban Severna Park Maryland with my family and friends. HOOOBOY do I have a life-altering story for you.
What – A Brain Tumor
I dealt with back pain and increasing weakness in my left leg over most of the summer of 2020 which was really frustrating because with COVID lockdown, I was spending more time active and outside with my family than ever before. Picking up hiking and family yoga and often going on 5 mile walks in the am before anyone else was even up and about. I was golfing and walking the course more than ever… but because of what we all thought was a pinched nerve in my back my physical profile just kept deteriorating. I was scheduled for back surgery on Wednesday, September 16th, but the night before the surgery, a precautionary MRI found a mass in my brain. And from that moment forward, life has just been absolutely bananas. B – A – N – A – N – A – S Bananas. Boy, those were the good old days of September 2020… worrying about a little back surgery.
Unfortunately, the tumor is the most aggressive form of brain cancer out there – a glioblastoma. It was very wrapped up in my motor cord but after recision, all my cognitive and motor function returned except the use of my left leg which is still very limited. The nature of the tumor requires some pretty aggressive ongoing treatment outlined below and unfortunately it never really goes away – thus the adventure begins.
Where – 4 days in surgery in ICU -> 15 days in inpatient Rehab -> Home Sweet Home
I went in for surgery at John’s Hopkins with Dr. Weingart, who I truly believe is the best doctor in the world for what I needed. I expected to be in the hospital for ~3-4 days then begin a long, arduous process of getting back to ‘me’ over the next several months/years. Unfortunately, due to the run of tough tumor news and the surgery’s depth, the doctors recommended I go to an inpatient rehab facility specially set up for neuro patients in the critical first 14 days of recovery. Some minor setbacks cost me one extra day in rehab but as of Friday, October 9th, 2020 I am back home with the family preparing for the next round of treatments.
When – A handy dandy timeline with links to more info if you are so inclined
- July 2020 – September 2020 – increasing leg weakness attributed to a pinched nerve in my back [full post]
- Tuesday, September 14th – the night before back surgery after a few new symptoms emerged, a lucky precautionary MRI identified a mass in my brain [full post]
- Thursday, September 16th – on the way in to meet my doctor and come up with the plan to tackle the tumor, things escalated with a seizure [full post]
- Friday, September 17th through Tuesday, September 22nd – a blissfully chill period of surgery prep and head-wrap-arounding [full post]
- Wednesday, September 23rd – Brian surgery at John’s Hopkins which, while executed perfectly given the circumstances revealed that the tumor is more ‘invasive and aggressive’ than most. This is really why I’m writing this blog – it was at this point I learned this is likely to be more of a longer journey than just a miserable point-in-time event. [full post]
- Thursday, September 24th through Thursday, October 9th – Recovery and Rehab in the Johns Hopkins ICU then the Sinai Hospital Neurosurgery Recovery Unit [full post]
- Thursday, October 9th – after a frustrating one day delay [full post] I came home!
- Monday, October 12th – we got back the pathology report confirming the tumor is an aggressive form of brain cancer, a grade 4 glioma [full post]
- Tuesday, October 23rd – The next phases of treatment feature daily radiation and chemotherapy for 6 weeks then 6 months of 5 days per month higher dose chemo. [full post]
- The Future – ?????? – I’m going to write a blog about it.
Why – MAN, do I like the other 4 questions better
When I have trouble with everything I’ve been through on this journey and all the bitter pills about how things are irrevocably changing for me, there are really 2 places that I keep coming back to which help me digest it all:
- There were NO risk factors that brought this about. I joke that I must have overheated my brain with all the conversations between the little dudes in my head and all the ideas that I spew out (good, bad, and off-the-wall), but in truth, it just picked me. Jenn and I didn’t pick the lower cost house under the power lines. I did not have one too many beers and yank the wheel of my car into a tree. It just happened. This is life, and it happens all the time to wonderful people all over the world that don’t ‘deserve it.’
- NO ONE is better set up to tackle what is coming for me and what has already come. I have the greatest doctors in the world, I am relatively young and healthy, I have Jenn, and I am surrounded by Team Rex – the greatest, most supportive set of folks anywhere. Whatever this journey holds, I feel great entering the fray.