The following is a moderately edited email I sent to work/colleagues on 9/22, the day before I got my diagnosis and discharge from the rehab hospital:
Good morning! I wanted to send an email with a bit (actually a whole lot, feel free to skip to the end if you like) of backstory and an update. Sleep doesn’t come easily in this hospital, so I’ve been up writing this off and on since 3:30am. I have to use voice to text, so apologies in advance for typos or rambling. I’m getting better but it still feels more awkward than natural at this point. I believe most of you know that I’ve been out all this month after emergency brain surgery. Here’s more detail and an update on progress and prognosis.
While in hindsight I may have had some minor symptoms pop up over the course of the year, the first major symptom I felt was during a golf tournament in mid-July, when my right arm started flexing uncontrollably and constantly throughout the course of the day. It actually began the night before, a Friday night, after the first round of the tournament, when I was slicing onions. I just couldn’t get the knife to work quite right and I had to slice very very slowly.
The following day during the second round My arm started flexing, often in the middle of a swing, and understandably the round didn’t go very well. I managed to shoot a 74, which in retrospect seems kind of miraculous. I had two putts that were less than 6 inches from the hole that I missed when I addressed the ball to tap it in and my arm flexed and the putter tapped the ball just an inch or two. Google indicated that the most likely cause was an electrolyte imbalance. I’m always super hydrated and add electrolyte powders to my water, but it was in the ’90s that day and I walked all 54 holes so I was hoping it was just dehydration / lack of electrolytes. But I scheduled a neuromuscular specialist at Rush… In February 2026. I found another one at U Chicago with an opening in November of 25, so I scheduled that as well. Over the next month I was able to play a few better rounds, but I felt like I had lost all muscle memory around the greens. Chipping and putting were horrible – – I was leaving 30 ft putts 12 ft short or hitting them 15 ft by, which just isn’t something that I do. In a state mid-am qualifier, I shot a 76 with seven 3-putts.
I started getting very worried when the whole right side of my body slowly stopped working the week of August 25th — it started with my foot not quite going to where I wanted it to when I stepped, my right hand typing slower than my left, and odd mistakes like pouring cereal onto the counter instead of into a bowl. The night of the 25th I was stung three times by wasps who had built a nest in our backyard shed that I was fortunate enough to discover, totaling 15 bee stings for the month of August after never being stung before in my life. I wondered if the 12 stings from August 2nd had created some sort of allergic reaction and the three stings on the 25th might be causing some general muscular weakness. They certainly swelled up and were quite painful.
The weakness on my right side progressed quickly through Tuesday and Wednesday, causing balance issues and making it very hard to work. I had to focus extremely hard on typing and wound up just typing with my left hand, which is a lot more difficult and tiring than you’d think. By Thursday my foot was dragging instead of stepping, and I was simply exhausted. It’s very strange to not feel sick at all but have an exhaustion level worse than the flu.
Coincidentally I’d had a check in with my primary care provider on Monday the 25th; he has neurological expertise and performed a stroke workup, confirming that I wasn’t having a stroke. He was more worried that I had a degenerative neuromuscular disease and urged me to see a neurologist as soon as possible. Some of the conditions he mentioned as strong possibilities were extremely worrisome. My symptoms were asymmetrical and coming on fast, both scary indicators. He doubted there was anything wrong in my brain because typically my symptoms would happen long after ER-visit symptoms like trouble breathing, swallowing, or speaking, or double vision / blindness if it were something in my brain.
On Wednesday the 27th, UChicago called me and said they could see me on Friday the 29th, which came as a great relief. But then Thursday the 28th, I realized that unless I focused 100% on my right foot, I didn’t know which pedal it was on while I was driving. There is no way I was going to be able to get to Hyde Park on Friday. Something was seriously wrong and I had to go to the ER immediately. I felt like it was going to be a long stay so I packed protein bars, bananas, chargers, iPad, and a few changes of clothes.
When I got to the ER at Rush Oak Park, I was immediately triaged to the front of the line and after they confirmed I wasn’t having a stroke, they scheduled me for an MRI and CT scan. The MRI revealed a 2.9 cm (about the size of a ping-pong ball) tumor in my left temporal lobe. I was quickly transferred via ambulance to “Big Rush” — the main Rush just off 290, where incidentally my wife has worked for nearly 13 years as an echocardiographer.
When I arrived I was quickly examined by two neurosurgery residents who were surprised I wasn’t expressing any of the symptoms that should have put me in the ER months prior – – the aforementioned breathing/speech/swallowing difficulty, loss of vision / double vision or headaches. They agreed with my doctor that if they hadn’t seen the tumor in the MRI, they wouldn’t have thought that it was brain related. Right up through the day of my surgery on Tuesday 9/2, my only symptom was muscular weakness from the tumor swelling into surrounding brain tissue. I’ve since found out it’s a very “medically interesting” case, and by all accounts I should have had way more symptoms, and I should have wound up in the ER much earlier.
I had an emergency craniotomy/excision on Tuesday September 2nd that successfully removed all visible tumor. I got extremely lucky that a surgeon whom Rush had aggressively courted had just arrived there 2 weeks prior, and I was one of his first surgeries there. He’s a brilliant surgeon with advanced brain-mapping and minimally invasive techniques. He confirmed that there’s still a neurological connection to all the muscles on the right side of my body post-surgery, which has been a great motivator during recovery.
Quick trigger warning, Don’t read the next couple of sentences if you are squeamish. I was prepped to expect a large l-shaped incision, the scalp pulled back from the skull and a large square cut out of the skull for access. My head would be about a quarter shaved and I would wake up with staples in my skull and a big bloody bandage on my head that would need to stay there for 3 to 4 days.
Instead, thanks to Dr Mallela’s extraordinary skill, you can barely see an incision, he didn’t use staples to seal it so there will be minimal scarring, and I was allowed to shower with shampoo just 3 days after the surgery, which is unheard of amongst the rush staff who are treating me in post-op. During the surgery, he tested my brain before and after each cut to confirm that all muscles still fire when stimulated. This part was crucial, because if he had removed the ability to fire the muscles, that’s something that typically doesn’t return.
He had to remove a large number of motion initiation neurons, but those are apparently neurons that can regrow or be rerouted from elsewhere in the brain to reconnect to the muscles and initiate movement. They also discovered during the surgery that my brain is arranged a little differently than normal and the tumor inhabited more of my speech processing than initially suspected. When telling Megan that the surgery had been successful he warned her that because of this odd brain configuration (color me unsurprised that my brain has an odd configuration), there is a strong likelihood that I wouldn’t speak for weeks or even months after the surgery. He thought it was likely that I would get full speech back but didn’t know when. 10 minutes later Megan walked into the post-op room and I was blabbering away asking why I had all that hair left and what kind of bone saw had he used because it clearly couldn’t have been the right one since I still had all my hair.
Just 3 days after surgery, I was transferred to Rush specialty hospital for intensive inpatient rehab, where I remain today and will be through the 23rd.
[Editor’s note: the following was based on the first tumor board meeting, where the clearly defined borders and lack of direct tumoral symptoms indicated it was likely a low-grade glioma that had grown big. I would find out via genetic testing the next day that it was actually glioblastoma.]
My prognosis is very good. While the surgery removed The entire visible tumor, there are still seeds of cancer lurking down in the neurons of the temporal lobe. This will require a heavy duty course of chemo and radiation which will last at least 6 weeks. However, indications are that the cancer is fully beatable and that with an aggressive 6-week treatment, I may already be declared cancer-free. There’s a chance I may need to undergo further chemo, but the doctors are confident that we can fully eliminate the cancer. When we do that, the chances of recurrence are very low. I’ll still need regular MRIs, but fortunately the titanium plate and screws used to refasten my skull are MRI safe and won’t trigger metal detectors.
I’ve been doing at least 3 hours a day of rehab every day since September 6th. I have full feeling in the right side of my body, but I still haven’t been able to initiate movement in my fingers [first finger movement would come on October 7] or most of my right arm. My leg is coming back much faster.
It remains to be seen whether I will need to relearn how to write, type, play guitar, swinging golf club, etc. It’s apparently conceivable that I will be able to write as soon as my brain relearns how to control my fingers, but my handwriting may be significantly different than it was before, or it may be identical. if I start dotting my i’s with hearts and flowers, I can’t be held responsible. That’s just how my brain will have decided how to regrow.
My discharge date from the rehab hospital is this Wednesday the 24th.
I’ll be home on the 25th to celebrate my 10th anniversary with my wife, and the 26th I’ll begin chemo, radiation, and day rehab. Everyone at Argonne has been incredibly supportive, for which I will be eternally grateful. My family and friends have stepped up in a huge way, and my wife Megan has shouldered an immense burden with grace and a strength I knew she had but I don’t think she realized she did.
I feel nothing but strength and positivity going into the treatments, but I really really miss my kids. I can’t wait to get back home.
Here’s a video of the before and after MRIs: https://youtube.com/shorts/9Erw3BxRRvo?si=lkJ5DhMOGEYRzvio
This is a video of one of my first days in the rehab hospital, about as exhausted as I’ve ever been, after 26 minutes in a robot exoskeleton manhandling me into walking. They had me scheduled for 10 robot minutes, but I kept asking for more. The only way to get enough clearance to get my right foot off the ground was to perform a full ab crunch and inhale deeply every step. Fortunately I’ve been doing squats, push-ups, and planks every morning all year, so I have more core strength than I’ve ever had in my life. More lucky timing! https://youtube.com/shorts/y_qFRMCoPCQ?si=aACu4zAxJft5jAcQ
And here’s a video of progress I’ve made since then. I even scaled and descended two flights of stairs yesterday with no assistance aside from a leg brace. It means I’ll be able to sleep in my own bed when I get home. Since I’m only getting about 3 hours of sleep a night here in the hospital, that’s huge.
https://youtube.com/shorts/twICqzHDV68?si=urFbx3fCQd9DSg3Y
There’s been a wealth of positive and beautiful moments since I got here, including getting to celebrate Wes’s 8th birthday with him on the patio outside (pure joy here: https://youtube.com/shorts/ywEgXtiBSgI?si=R9jVf26NT4jSyKEJ ), watching the sun rise every morning over the skyline with my incredible East-facing view (https://youtu.be/hXx2JGsAMKY?si=0xHpx_1_FFSY-RjZ for a time lapse video), getting upgraded to mobility level 3 which literally just happened 15 minutes ago!, and many other tiny triumphs like feeling muscles activate suddenly for the first time since surgery. I’m getting so much joy from simply being able to be vertical and moving. Occasionally my physical therapist will ask if I’m doing okay and I’ll realize that I’m welling up with tears of happiness because it feels so good to be mobile.
I’ll be continuing day rehab as long as is necessary to regain as much function as possible. That will be three or four days a week for 3 or 4 hours per session. We may have to tweak it depending on how the chemo and radiation affect me, but I’m very motivated to reacquire everything as quickly as possible, so I’m hoping to be able to power through the chemo and get the full 3 days a week of rehab during treatment.
I’m hoping to be back at work sometime in November. [It would be January and remains very limited hours] The therapists keep telling me that I’m young and strong (and I keep asking them to say it again louder so that everyone can hear it)…
[I’m going to cut it off here as the glioblastoma diagnosis came through the next day, so the predictions turned out to be pretty far off]
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