Brain pain, seizure, and steroids! Oh My!

The 411 from the past two weeks. Tuesday two weeks ago, I was shopping and began seeing “mirages” very similar to what I saw before my brain tumors were diagnosed in January. These lasted a long time and I ended up ditching my cart and having Danny come rescue me and we headed to the ER.

After a long wait and MRI, the MRI didn’t show any new tumors, but some swelling of the sites I had treated in January. This apparently is common with dying brain tumors, the brain isn’t very good at dealing with necrotic tissue.

I didn’t have any symptoms for the next 13 days until we were at Costco with the family on Sunday evening and the vision changes came back. It ended up getting worse and I had some difficulty communicating.

Got through the night (after a period of lucidity and convincing Danny I was ok for the night.) Woke up with the same symptoms plus a horrible headache and we decided it was time to call the doctor. They sent us to the ER with a promise that my doctor would meet us there. Sadly over the course of 6 hours in the ER waiting room, we moved from priority 3 to priority 8! (Still in the waiting room and the exam rooms were all full. We would have had to wait for 8 people to be discharged!)

We called the doctor who had planned to meet us begging for mercy and he agreed to send us home and call in a prescription for a steroid to reduce the swelling. I’m still not sure exactly why he sent me to the ER. I know it was my best chance to get an MRI, but he was confident as to what was going on based on the previous MRI. Originally, we thought I was having ocular migraines, but my radiation oncologist (the top guy in Tucson) told us this is NOT the issue, it is the necrotic tissue causing irritation and swelling in my brain. Oh the fun!

Tomorrow I see the radiation oncologist for a follow up. Thursday I am scheduled to have dose 9 of anti-pd1. I had a CT scan of my body today and we are praying and hoping for positive results showing less disease in my body so I can continue confidently on the trial. We are also praying the steroid does the trick and I will not need it long term.

Often drug trials don’t want patients on steroids, we are hopeful this won’t get me kicked out of my current trial. Steroids also suppress the immune system, and we want the opposite so my body can fight any cancer, so please pray that they work well and thoroughly and I can get off them quickly!

Hopefully this makes sense. We have a LOT going on and appreciate prayers. In praises, Danny has been incredible and his boss and company have given us 100% support giving Danny the week off to focus on taking care of me. We are so thankful. The kids have been a little worried but seem to be doing ok and are excited for special events at school this week. We will try to update on Thursday when we know what is going on.

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