Category: Uncategorized
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I’ve been radio silent for a while. My last MRI was September 18th, and did not have the results that we were hoping for. We were looking for no new enhancement, basically just stability and possible pseudo progression at the LITT site. What we saw was more progression and some possible recurrence at the original…
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I had a 7:00 a.m. meeting with two doctors in Vilnius, Lithuania, this morning. They politely teased me when I said “good morning” and they responded “good afternoon! We’ve been working all day!” They were also delighted when Wes came over & I told him that they were my doctors in Europe, and he said,…
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My tumor and my blood are now in Germany being analyzed. I hope they’re having fun and eating lots of delicious encased meat! This morning I got out of bed, stood up, and my right leg went full Frankenstein mode. We hit it pretty hard in PT yesterday, so it was a little too ready…
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I received Opdualag infusion number 2 on my 47th birthday this week. Bristol-Myers Squibb approved my application for free infusions for a year. Which is good, because this is an off label use not covered by insurance and each infusion is $25,000, give or take. I’m starting to settle into life with Optune attached to…
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He’s threatening to grow too big for it but we aren’t there yet.
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Last week I went to New York City for what I thought was going to be another routine MRI and dose of SurVaxM. Unfortunately, that was not the case. In the 9 weeks since my last dose and 7 weeks since my last MRI, a new 17 mm tumor popped up in my corpus callosum.…
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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…
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That’s the 2.9cm (roughly ping pong ball size) tumor on 9/1/25 and the hole in my left temporal lobe where the tumor was removed on 9/2/25. Here’s me immediately after surgery:
