1) Surgery – The Good Part
I really cannot say enough positive things about Johns Hopkins, and Dr. Weingart. My prep and surgery were handled in the Zayed Pavilion at Johns Hopkins and incredibly well run, spare no expense, highly staffed neurosurgery experience where I really don’t think I encountered anyone who had been doing this for less than 15 years including Dr. Weingart’s right-hand man who had been at it for over 20. Every time I walk into that building a sense of calm and confidence comes over me and it made the entire process much easier.
The surgery and surgery prep really started the morning before the big day on September 22. I went in for a special MRI where they come up with a battle plan. I was told there would be a glow-in-the-dark map on my head and I could not have been more excited. I was hoping for something along the lines of Avatar/Braveheart/Last of the Mohicans though in reality it was closer to glow-in-the-dark stickers and some sharpie.
I managed to keep all of the stickers on and not smudge the sharpie so when the big morning came and Jan and I walked into the assigned area at 515 in the morning everything from the check-in to a very short way before I went into the operating room went as smooth as could be. I had even been assigned to the fancy room which was sort of cool to see all of the various machines and tracks along the ceiling and different cables and apparatuses. Don’t get me wrong, I was terrified, but everything moved so efficiently and all of the medical stuff was so cool that I was under anesthesia before any of my fears or concerns really had a chance to land.
For some reason, from the moment that I heard I had a brain tumor my number one fear by a mile was that I would not wake up after surgery. I just always feel like if I have my mind and my people around me I’ll be able to get to a good outcome. Where if I didn’t wake up it doesn’t matter how great those doctors or that plan is. I actually really think this has helped me with the recovery process, because in my nice small minded world I had already accomplished the most important goal. After the surgery Dr. Weingart confirmed he had removed the entire tumor, and I could definitely 100% confirm that I was awake and holding Jenn’s hand. Success!
2) What They Found – The Bad Part
While we accomplished goal number one in the surgery, that is pretty close to the only piece of good news that Jenn and I have received in the last two weeks.
The hope in a situation like this is that I had a meningioma – a growth that lives lives on the membrane that surrounds the brain and pushes in but is slow growing and can be removed. It is scary, and traumatic, and there are a lot off challenges to recovery but once it is out, it really about helping your brain recover back to normal and recurrence rates hover below 5%-10% for most grades. It is so prevalent that before knowing anything about my particular case they refer to the procedure I was lined up for as a meningioma removal.
With a positive attitude and high hopes we went into this looking for meningioma news (which is kinda funny from an expectation point of view… 2 weeks ago ‘hoping for meningioma news’ was not a place I thought I would be) and were disappointed at every turn.
- The morning of the surgery we learned the tumor didn’t light up white during MRI battle planning like it was supposed to
- The surgery was complicated and required removing more material then they expected
- They still believe they got it all but it was really wrapped up in the motorcord and used awesome terms like ‘aggressive’ and ‘invasive’ in describing what they found. The doctor seemed genuinely surprised after the surgery when he asked me to move my left leg and I could kinda do a knee-spasm thing.
- They confirmed there will be ‘at least’ follow up radiation treatments
- Labs are required to put a ‘name’ and ‘grade’ to what we are dealing with and we meet with Dr. Weingart to discuss these things and learn the ‘playbook’ to attack this thing on Tuesday, October 6th. That is, uh, what they call a big meeting. They will also take the staples out of my head, which sounds fun. Lot’s to look forward to here.
So basically we are in a holding pattern waiting for some gigantic news on the 6th – which is just an emotional mindfuck – you’ll never guess where minds roam in the middle of the night. The doctor put it pretty cleanly in the recovery room as he was delivering the news (and marveling at my leg spasm): “There are several options of what this could be and there are many different playbooks for how to approach treatment. All involve radiation and follow-up generally starting a few weeks after surgery. The follow up MRI looked good so the likelihood of immediate follow-up surgery is small. The ‘name and grade’ will come back with the labs and we will meet on the 6th to determine the ‘one playbook’ we will follow, there is no reason to go start learning the 5-6 playbooks it could be”. I’m pretty sure he also told us to relax. LOL.
By this writing we have made it most of the way to the meeting date which is great – I just can’t decide if I want that meeting to hurry up and get here? Or just never come? My opinion changes every 30 seconds.
My approach to this meeting is to read/learn nothing new. This lab and doctor will have had 1.5 weeks and 40 years of experience to tell us what to do from here. But I am going in with realistic expectations knowing the best options are off the table with the range now covering medium to bad. For my statistics friends the decision experience has been like a math problem. There are 5 bags of discs in front of you, each bag has 70% green discs 30% red discs. Start at the left and pick a disc from each bag, you can stop when you pull a green disc. Reaching into every bag you assume a green disc is coming, but you keep getting red. I’m going into this meeting assuming neither so the upside surprise is on the table 🙂
It is also worth sharing a feeling and mantra I’ve used a lot to get through some of the rough mental spaces. NO ONE is better setup to tackle this things – whatever it is. I have the top doctors in the world, I’m 20 years younger than most people that experience this, years of being so active has my body responding amazingly, Team Rex is supporting me every step of the way, and I figure it can’t hurt to be this ridiculously good looking. On the 6th I get a playbook, but I’m chasing edge cases and features in medical journals. As my sister says so succinctly ‘it is what is it’ and as I respond to her everytime – ‘bring it on’.
3) Recovery – The Dark Part
This wouldn’t be a proper story arc and we will never get to the fun parts if we never spend a few minutes in the dark. If Buttercup never first loses Westley how can we really enjoy all the chasing and swordfighting and counting fingers and that follows?
It turns out brain surgery sucks. For the first 24 hours after the surgery, there are more lines and IVs and brain drains hanging out of you that you can count and you’re afraid to move because it reminds you of all those things (and I’m a wuss to begin with… like can’t watch Grey’s Anatomy level wuss). I can’t imagine what Jenn went through as after a special request she was able to join me for most of the day Wednesday. She fed me ice chips and was incredibly helpful because I was really pretty foggy and there was some very important information shared. The next two days I was on my own in the ICU getting neurological tests every two hours round the clock, slowly making it through the anesthesia and drugs and nausea, and just generally waiting for… something. The drugs had me pretty addled which was nice but it was just a slow and unpleasant few days. I also really had trouble emotionally given all the unexpected news that has landed over the last 2 weeks and particularly the previous 24 hours.
The good news is starting that Thursday the 24th, physically every day was 10x more manageable than the day before. I admittedly was still struggling to keep my mind in an OK place and sleep wasn’t really a thing, but each time an IV was removed or another from a battery of a thousand follow-up tests was passed it felt like it became more my body and less theirs. I also got made fun of pretty good because my love of technology helped keep me sane. The bed constantly moving to prevent bedsores, the weird leg pumpers that press air to avoid blood clots, the weirdly musical new blood pressure testers that sing to you while filling the cuff with air – I loved them all. It was awesome to be in the middle of this incredible symphony of technology all working exactly the way it was supposed to supporting me while my body was getting ready to take over the recovery.
4) Adjusting Expectations – The Emotional Part
Walking into the Zayed Pavilion at Hopkins expecting to have a meningioma removed, the plan was to have surgery Wednesday morning then recover in the ICU and come home Friday the 25th or more likely Saturday the 26th. The convalescence would be long and slow at home moving forward but we were ready for that and has prepared our home and the kids for a month or so of super chill living and quality couch time. I got a Switch so I could play more with Luke, I was 100% counting on magical Taylor hugs and Kate giggles to speed the recovery process and while I was very concerned about the Grayson headbutts, as with all things Grayson the belly laughs that always follow should still have netted out positive.
With the surprising invasiveness of the surgery, it became clear I was going to need a lot of help and time to be ready to return home. My left arm and hand was generally responsive (woohoo) but not very strong or coordinated and more importantly that left leg had almost nothing. Jenn needs another kid/invalid to take care of like she needs a hole in the head (which is now a much funnier phrase to use) so at the suggestion of the doctors and pretty much everyone else I interacted with it was made clear I needed to go a hospital for rehab. This was a really bitter pill to swallow because while everything is trending in the right direction, recovery from major brain surgery is really a double-edged sword.
- The good side is the brain is absolutely amazing in how it works around issues to find a way to recover – neuroplasticity, swelling going down, drugs to support regeneration, and tons of support from professionals to reteach my body how to behave means I can come a looooooong way back from where I am today and I can expect to keep adding strength and capabilities with recovery and improvement continuing for a year or more.
- The downside is this all happens very slowly and inconsistently and the most important time period is the first 14 days. This meant under COVID rules I was about to sign up to be away from my family in a hospital closer to 2.5 weeks than the 3 days I was expecting. Just awesome, thanks #2020. Jenn had fun teasing me when I kept quoting rehab stretches of ~3-4 days when I spoke to my family on the phone instead of the 14 days all the doctors were very strongly recommending. You’ll never guess who was right?
And so ended my time at Hopkins – a truly miserable time filled with oodles of bad news that I can’t help but appreciate and respect because they handled everything with absolute class and everything was executed to perfection given the constantly changing circumstances. The staff had been so perfect every step of the way that I really tried to stay there for my rehab but they didn’t have any beds available and finally despite a half dozen outlandish claims that I was ‘ride or die Hopkins’ my doctors and I decided to transfer to the neurosurgery rehab unit at Sinai Hospital.
At some point I’ll share the nutty story of the transfer to Sinia in the dark, in the rain, in the oldest, loudest ambulance, driven by Sarah the CeCe Peniston shouting ambulance driver that cussed out a closed exit, flipped around across the median on 83, and had me seriously questioning my medical decisions for the first time as we rolled up toward Pimlico through some of Baltimore’s finest majestic vistas. But that time is not now. You’ve made it through a really tough part of the story and what really matters is that from the moment I checked into the Sinai rehab ward I have been 100% confident I am in the right place to get strong for the rest of the journey.