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.
Please excuse the dark humor. I’m in that mood – plus cats make everything better?
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.
Paula
Thank you for the update
I’m so glad you’re mom was there
You are always in are thoughts and prayers
Love you ❤️🤗😘🙏
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I don’t know how you even can give an update. You are stronger than I ever imagined and have the best wit I’ve even heard. The cat was funny. Enjoy your trip to see your family and friends
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Ever
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Seems unfair to lose 8 hours. Thats crap! (Though if I could lose 8 hours of my stupid workday, I think I’d be ok with that!)
Love you Paula! Have a great trip! XOXOX
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If you want a tub of Cherry Garcia, I will deliver it in a nanosecond. xoxo
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I promise to keep you on my ice cream radar! ❤️
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Well just wow….. and Cheryl ‘s favorite saying… christ on a f-ing crutch!! Glad they stabilized you, glad you are going on this trip- sounds important and a really good reason to travel— but I’m so damned sorry you lost 8 hours and that this is happening…… ugh….. I hold you and Timmy both in my heart and thoughts….. and dark humor is the best kind!!
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I keep thinking about how incredibly strong you are, and how much I adore you.
And grand slam on the dark cat humor.
xoxoxo
S
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No more of this crap. You are going to make it to your Dad’s memorial service at the farm. This is sort of what happened for his first memorial service and it will–will not happen again because I damn well say it cannot. He will be holding your hand until you get to the farm and will continue holding it. Keep rubbing his finger print–it helps–I know. I will want to know what your MRI results are–please- or I will worry about you more than I already do. I am sending all the love I have in my heart to you to keep you well and safe.
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Damn! I’m so sorry for all you’re going through. So happy you get to go to Chicago and visit some family! Hope to see you soon. Love you! Xoxo
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Love you too! I wish I could spend more time in IL and see you guys, but I’ll have to get back for treatment (whatever that ends up being). XO
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I am with Nora. “No more of this crap.”
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Let me know if you need any Guinness cake reinforcements. I’m going up to RI this weekend and next! In the meantime, sending my love.
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❤️❤️❤️
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