My words are coming slower with more pauses In-between. I may have to have people speak for me as I drift farther into never land. The place were we never grow old and die. The place where I ignore all the monitors and beeping machines with noxious liquid drips. I have about a week to go with the really horrible stuff then we are just waiting for my new marrow to graft.
I have completed my radiation treatments. They were miserable. I had to strip down every morning and afternoon on a cold table. The technicians would arrange my body and stick tape to hold diodes in place. They would often rip this tape off forgetting that there is fragile skin underneath. I’m going to need a lot of tattoos to cover these scars. You have to hold still in one position for so long that your bones ache and you have to pee desperately but a break to go potty would mean starting over again. My side effects from this is nausea and fatigue and my skin is tanned and sunburned. They told me that wouldn’t happen but I’m guessing they didn’t take I to account my super fair skin.
Today I have my second dose of ATG ( aka Shake and Bake). They don’t tell this to the patients but I figured it out because I’m smart like that. It means that this drug brings on fever and rigors ( shaking). The purpose of it is to reduce the effects of graft versus host disease (GVHD) which can be brutal and it the biggest risk factor for me. I also had my first high dose of cytoxine chemo drug. This will drip in slowing over the next 48 hours bring my awareness and sociability down with it. I will likely sleep between bouts of nausea and nurses waking me eat something and go pee. With this drug I have to pee at least 300 cc of urine every 2 hours or I have to take Lasix. It probably wouldn’t hurt too much since I’ve put on about 10 lbs of water weight since being here. I’ve had cytoxine before but at a lower dose and it still knocked me on my ass.
Goals for today: I ate 3 bites of cereal for breakfast, took my pills (other than the ones I argued with the nurse about) then sleep till noon. At noon I woke up enough to drink a Boost Breeze wild berry ( not peach, those are horrid) and I considered that my lunch but a food pushing nurse talked me into a small bag of pretzels. Afternoon snack the same nurse made me a chocolate milkshake and I drank some of it. Dinner again was Boost Breeze. They go down easy and are high calorie with nutrients and protein. I don’t know how they get protein in a clear liquid. I’m sure there are lots of chemicals involved.
Exercise: nil I’m attached to the bed with heart rate monitors and IV tubes. I might work up some energy to do some leg lifts in bed. The nurses are looking for a portable heart rate monitor so that I can get up and walk around some. That would keep my PT (Kyle) happy
Shower: I took a shower independently first thing getting up this morning. I slept from 8:00pm to 8:00 am with interruptions during the night for vitals and pills. I wanted to stay in bed but I got up and showered anyway because the ATG makes me sweaty. It could also be because I heat my room to 80 degrees.
I have been listening to my Pandora station titled folk music with a strong female lead (thumbs down on the Taylor Swift) and yes, John Mayer shows up in this list and he totally gets a thumbs up. I’m including a music video that portrays the emotions that I cannot show right now.