I had another 2 weeks of radiation on the tumors in my brain. I think there was something trying to grow back, and the tumor bed where the 4cm tumor was in my parietal lobe had been that now has shrunk enough to be radiated. I am a little fuzzy on this because they talk about the right and left occipital and when I had the original scans and surgery, they talked of one in the occipital lobe and one in the parietal. Shrug.
I started radiation about a week after getting home from rehab. I took Lyft and the Cancer Society’s volunteer rides to get to treatment downtown. This radiation treatment sucked. The first time didn’t seem so bad. This time there were a bunch of difficulties. They still had my mask from the first time. Because of steroids and hair growth and a few other things, it doesn’t fit exactly the same. For some reason, too, it doesn’t put my head in the position they want it for treatment. I’m not terribly claustrophobic, but after an hour or more in this mask, I wanted to jump off the table. I suppose it was a good thing I couldn’t just jump up and off the table. It wasn’t like my body would allow that anyway.
There were a couple of times I was near tears from the stress of it all. I worked pretty hard with the radiation techs to figure out ways to solve the positioning problem. The engineer in me wants to fix it. The patient in me just wants it done and finished. During one session it occurred to me that we should try a chin lift like we used in CPR. We tried it a couple of times. It worked once.
I went home with nasty headaches more times than I want to count. I had visions of ordering a pizza before leaving the hospital and taking it home for dinner. Too many of these treatments were so late and stressful that I couldn’t stand the thought of waiting in the lobby for a pizza or a ride. I might have eaten after getting home about half those times, my stomach being in a knot didn’t make eating too appealing.
A couple of weeks after the radiation was done, I started losing hair. I didn’t really notice it until one day I looked in the mirror and saw a big bald spot on the back of my head. I don’t know why a bald spot on the back of my head bothered me less than being completely bald and missing both eyelashes and eyebrows from chemo, but it did. Maybe because my hair had just started growing back enough that I could think about the purple highlights I wanted to get after it gets long enough, and I was getting tired of wearing hats.
Another week or so later the fatigue caught up with me. Remember, I’m still on IV antibiotics. I still have an infection next to my brain. And I’ve just gotten back home from 2 weeks of hospitals where I couldn’t sleep worth a crap. Now I have also got physical and occupational therapy at home and I’m working again. I’m tired. Tired beyond belief some days. Thankfully, work isn’t horribly demanding and I can take an hour nap instead of lunch on those days that I need one.
I think that being on chemo at the same time as my previous radiation masked the fatigue last year. I don’t remember being this exhausted even after 7-1/2 weeks of radiation treatments to my chest.
I was thankfully not nauseous during this process, either. That might have been because there was a break in the middle of my treatment brought to us by Snowmageddon Seattle 2019. Like when I first moved to the Seattle area in 2012, we got about a foot and a half of snow. It stays cold enough that the snow sticks around for a few weeks before being rained away again. This time wasn’t really different. The worst part was being home with home health nurses and therapists coming and going and their not being able to get in the driveway. The condo association couldn’t be bothered to clear it. Myself, I was afraid that if something happened, the police and/or fire department wouldn’t be able to get in here to get me out and take me to the hospital. I think pretty much everyone in the community sent a nasty letter to the management company because they eventually hired the landscape company to come and clear it out with a Bobcat.
There are new things going on. My vision is changing every few days. I am Ubering to the eye doctor’s office multiple times during the week to get new contacts so I can see. The first time I went in, my prescription went down by half. Then, a couple of days later, it inched back in the other direction, but not enough to wear my old glasses again. Another few days and it was back to half again. I am thinking that it will go back to normal in a week or so. The optometrist thinks it will be months. I’m worried about what my insurance will cover.
I am kept busy by therapy appointments and the eye doctor for the bulk of February and into March. I’m working full time but not at anywhere near my old capacity. This frustrates me but I’m grateful for an employer who will work with me to make sure I can stay on the insurance as long as possible.
The therapy is going well enough. I have a couple of coworkers and neighbors who helped with groceries and prescription refills. One of the therapists continually reminded me that I have to be home bound and can’t be out getting groceries or running errands while they’re coming to my home. Funny thing is that I went out exactly twice for groceries and supplies exactly twice during the whole month of February. I went to a pile of doctor’s appointments but they don’t care about those.
I’m supposed to have a bath aid come out one a week or every other week to help with a shower. At 5 weeks in, I still haven’t seen one of those. I have asked the OT to help me with a shower both times she’s been here. I’ve also had the OT help me put clean sheets on my bed. I am still easily worn out doing this formerly simple task.
Toward the end of therapy in March, I finally get a bath aid. After one shower, I came out of the bathroom to find all of my laundry neatly folded at the end of my bed. That was a nice surprise.
The speech therapist is helping me to organize tasks. We find that I can focus on things for about 30 minutes at a time before I need a break.