I lost eight hours on Tuesday. I went to our bedroom to rest and after that I only remember bits and pieces until regaining my power of speech and comprehension courtesy of IV steroids. Which is a shame since I just tapered off of the darn things, post-London.
Unlike previous seizures, this one snuck up on me without headache, visual disturbance, or any early warning signs. My mom called the ambulance and the hospital whisked me in for a quick CT scan to rule out stroke and/or confirm seizure, as I was having a hard time articulating any thoughts. It was fortunately not a stroke, but a seizure caused by brain swelling. They increased my antiseizure medication by 25% and gave me a blast of dexamethasone, which stabilized me. I had trouble gathering my words for the next few days, but I’m mostly back to normal (whatever that is) now.
My neurosurgeon fears that any more radiation treatment right now will just cause more necrosis and/or swelling in my brain. So at her request we went back to Dr. B, the neuro oncologist at Yale Smilow, to discuss adding Avastin to my treatment regimen instead. Dr. B is not 100% convinced it’s the answer for me, but he has pushed through an additional brain MRI for me tomorrow so he can present it and my case history to the Smilow tumor board next week and confer with the rest of the Yale docs. Long story somewhat shorter – I won’t know what’s recommended until a) the MRI is done, b) I get the tumor board feedback, and c) I consider everything with Dr. K, my main medical oncologist at Middlesex Hospital.
I will be traveling to my dad’s hometown in Illinois over Labor Day weekend to attend a memorial service in his honor. It’s a direct flight both there and back and I’m meeting my sister at O’Hare for car travel, so with the new increases in medication I should be just fine. I’m excited to see some relatives I haven’t talked to in years, and to give my dad a proper personal send off (since I missed the initial memorial in Seattle due to being in the hospital in 2017).
I’ll keep you all posted on where my treatment is headed as soon as I find out. As always, thanks for your love and support for our family.