June 13, 2024
Today was my second day in a row at Mayo! It started with a brain MRI in the morning, after I had my eggs and one sausage at the hotel we stayed at, and in the photo on the left, you can see my blue eyeshadow matches my hospital gown perfectly, which was perfectly unintentional! I wrote down that the two people who completed my simulation were named Harley and Dani, Dani spelled that way. ALSO I DEFINITELY did not apply makeup at Mayo Clinic!! I did HAVE to get an MRI, and took a pic of my container of bobby pins! MRIs don’t usually bother me, and it didn’t bother me again on the 13th! I took several pages on notes on things Dr. Abeykoon said, and I successfully have those notes with me now, in my notebook #22. I also learned that they are planning for me to start radiation, tomorrow, in a surprise!!!!! That meant that today I actually had a radiation simulation where they determined how my body will be positioned for the radiation to my lower spine to stop the cancer from growing. I may end up getting two kinds or radiation — one is the photon-radiation, which will start Friday (tomorrow). Later in the 10-day series, I may get proton-radiation, but we're not sure about that yet. Dr. Abeykoon told me that he wants me to stay on my targeted cancer drug for now, “but my brain disease is mostly stable.” I think the spine-disease is not stable! So, the plan is ten days of radiation while I continue on my targeted drug,and get one more round of intra-arterial chemo to my lower spine. He hopes that will be enough to pause growth in my spine while they continue to explore other options, like a different oral drug, or the opening of a clinical trial. I still need to get extra blood lab work done after the next chemo, since last time it made my numbers drop, and I may need a transfusion. This all means I’ll have to spend another night in Rochester, so I’m here for my first radiation, tomorrow!
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