Thursday, October 15th started out as my best day in quite a while. The blood clots that have slowed my recovery are receding through the recommended treatment of elevation, heat, and activity. Just lots of short walks around the house and my driveway and cul-de-sac. I spent a lot of the morning getting organized to return to work and doing all of my therapy homework exercises. The afternoon was pretty chill but I was feeling so good Jenn and I start putting together a social calendar for the weekend – what a fun discussion topic after all of the time in hospitals under COVID lockdowns. Date night Friday, seeing a couple of friends for some college football for the first time Saturday, then inlaws for the Raven-Eagles Sunday. That is like a round of golf and 4 kid sporting events short of a normal weekend! (I REALLY miss coaching the Cartwheeling Ladybugs (above) we are a pretty mean 6-year-old girls soccer team – the only things tougher to beat than our team is our name)
So I was feeling like a million bucks as I got out of the shower and ready for bed that night. But yet again my body was ready to remind me this is going to be an adventure, not a smooth short-story arc. Sitting down to take my evening medication – anti-seizure chief among them – I started having my 4th seizure. It was really an odd experience because I had learned so much from all the doctor conversations following my last one [post]. The vast majority of seizures are not dangerous as long as you are in a safe place and never lose consciousness. This seizure was MUCH less intense than I experienced the last time but just to keep things interesting it last 6 hours! from 11 pm to 5 am. For the first 10 minutes, I just lay on the ground in my bathroom debating with Jenn whether it was even worth calling an ambulance. We finally decided to call when it wouldn’t subside and the EMTs from the local fire departments were great. They gave me some muscle relaxers that lessened the intensity of my spasms in my arm and leg (similar to previous seizures it was 100% on my left side, starting in my left abs sending tingle-spasms out through my entire left side). I was totally coherent and never even a little scared – it was just weird to not have control of half of my body.
I went to Anne Arundel Medical Center (not a new hospital, but a new ER!) hung out in the ER till 5 am having non-stop spasms that mostly never left the area from my shoulder to my thigh. Sometimes they were so subtle I was able to take ~15-minute naps through them. Jenn took another hero turn, getting me safely set up at home, making the exact right call on when to call an ambulance, following the ambulance and semi-sleeping on two chairs pulled together facing each other, and even somehow managing to handle the whole thing without waking up the kids (the inlaws were on call and covered the night – thank you, Carol and Allen!). We were out of the ER by 7 am, exhausted but in good spirits.
The weirdest follow-on has been that as I write this 2 days later I am still having minor seizures and have been non-stop since we left the ER. I get ~1 per minute most of which just consist of a little twitch in my abs. Then once every 10 minutes one shoots down into my leg and once an hour one lasts ~30 seconds and gets up into my shoulder causing an awesome shimmy-shake thing. I’ve spoken to the on-call doctors and they are not overly concerned which is great. They put me on a little higher dose of anti-seizure medicine and a low dose of a steroid – and not just any steroid – the one Trump claims turned him into Superman!
There are several amusing things about this situation:
1) I have a golf buddy that got good this summer somehow and claims it is all about ‘Firing the Glutes!’ and I assure you no one in history has fired their glutes more than I have in the last 3 days. This will have to be good for my game when I get back.
2) My glutes have fired every 10 minutes for the last 3 days but my abs have fired every minute and started with 6-hour non-stop workout. There is a tiny part of me that wants this diet to work (see below) and I’ve gotta think that if this keeps up I will have the first-ever 3-pack with my left side absolutely shredded with a pretty standard dad bod on the right. There is a tiny part of me that wants this to happen so I can find a sketchy workout device to underwrite my treatment as I am both the before and after guy in the same picture. don’t worry, there is a much bigger part of me that is ready to be done with these weird seizures…
A Plan of Attack for Treatment
Over the last few days, I have met my oncologist – who I love, started my outpatient therapy at John Hopkins with a physical therapist in particular that I am thrilled about, and on Monday I meet my radiologist and hopefully learn my schedule of treatments moving forward. I have also finally had some time over the last few days to think about a plan moving forward and how I can be an active part of my treatment. All greatly supported by info/research, connections, and personal experiences shared by Team Rex.
- I’m going KETO – this will be the first diet of my life. When I needed to drop a few lbs. in preparation for back surgery I made some major life changes like ordering one order of wings half hot/half old-bay as opposed to a full order of each and passing on some late-night snacks. This time I’m going all in and have had a lot of fun learning about the diet, how it is supposed to work, meal planning, etc. Jenn has become an amazing cook over the last few years and she has totally jumped into keto meal prep (seizures and knife skills don’t mix so I’m on the sidelines for now). A few folks I really respect have suggested some more designer diets and the inclusion of some naturopathic supplements and over the next few weeks, I plan to explore these options. In the short term while the research supporting the ‘starve the tumor’ keto strategy is thin I can totally get behind any diet that helps me get strong for the next stages of my adventure while still allowing me to house the occasional steak.
- I’m very interested in clinical trials and finding a cutting-edge oriented second opinion doctor – I love Dr. Grossman at Hopkins and I am thrilled with him as my lead oncologist. He is old-school and believes in the research and in what he has seen work – which I love. He also encouraged me to seek second opinions and research these options which is the kind of open-mind I love. Pretty much no matter where you go the first 6 weeks of treatment and generally the first 6 months are straight from the playbook so there is no super-rush, but over the next few weeks, I plan on researching and coming up with ~2-3 doctors on the cutting edge to speak with about some of the more interesting clinical trials available today. Please keep sending me your ideas and recommendations to rob.rex@gmail.com, the more information that informs the next steps the better.
A Tough Thursday into a Great Weekend
Even with all the craziness, after a Friday to recover from a night of no sleep I had a great weekend. Some family favorite Pho on Friday, Saturday I hung out with a couple of buddies for some college football (and had my first drink in over a month – Basil Hayden’s on the rocks, what a treat), then a lazy Sunday with the family that closed with The Karate Kid.