Well, yesterday was rough. I woke up with some disturbing symptoms that heavily mimicked my symptoms from my tumor before – weird vision, nausea, overall feelings of weakness… Brandon had me email Dr. Monga and Dr. Smith. Dr Monga suggested that I bump up my steroid dose – the one we have recently been tapering down – and dr smith suggested I go to the ER just to be safe. I called dad who was in Iowa city with mom, to ask what I should do. Then dad called my neurosurgeon, Dr. Krisht, who ordered an MRI for me at a hospital here.
So, dad rushed home and drove me to the hospital where I was hooked up to an iv, given some anxiety medication, some Benadryl, and fluids. The MRI took a while, but they’re feeling so routine now that I don’t even get scared anymore. I just take a nap. They give me s warm blanket and I conk out for 20-30 minutes.
After the MRI, the radiologist and Dr. Krisht conferred and came to the conclusion that we had tapered my steroid prematurely, and the surgery site, irritated by daily radiation, was causing some inflammation and swelling which was causing my symptoms. As far as we can see in the MRI images, there is no new re-growth or anything. Just normal post-operative swelling. Praise the Lord! It doesn’t help that this past week I’ve been so nervous and anxious and exhausted that i was feeling sick anyways.
Because of all this, dr Krisht, dr. Monga and the ER dr have bumped my steroid back up from 1mg daily, to 4mg daily. I know it’s to help me and I won’t disobey the doctors, but I hate this steroid. I can feel it makes my arm shakier again, it makes it harder for me to sleep. But I’m going to be on it strictly for the next couple weeks.
I hate my life so much right now. I wake up hating my life, dreading the day, looking forward only to when I can take my medicine to sleep that evening. This is all the biggest nightmare and I’m constantly woken up to be reminded it’s actually happening. I hate that I can’t even have a headache without it warranting a trip to the ER. I’m just miserable and I want to be normal again. I know it won’t ever be normal normal again, and that just breaks my heart. I just want some relief, some hope, that I’ll have many years with Brandon, that I can enjoy this holiday season around thanksgiving, and that mine and Brandon’s wedding will be the way I’ve seen in it my head for the past year and a half.
So that was yesterday. Scared everyone. I cried like crazy.
Today, dad is up in Iowa City with mom and he’s planning to come home around 3pm to do just a little grilling thing with Brandon and us for Independence Day. This evening Hardy will stay with mom and then Brandon will take me to my last radiation and mom will be discharged so we can take her to the rehab facility.
I just want it all to be over. I feel like I’m drowning. Each breath is a chore. Dear God, save me from this. Rescue me from this bottomless pit. Give me some relief. Please God, I beg you. In Jesus name, amen.