I thought I was one of the lucky ones. Because my chemotherapy treatment is a nighttime pill (Temodar), I would avoid losing all my hair. Well it turns out that the radiation treatment affects the bad AND useful cells in my head resulting in side effects such as losing hair and suffering short term memory loss. What was I talking about?
I am no virtuoso, but I have always loved poking around on the piano. It was disappointing to have stroked and temporarily lost my left hand - and hence, half my song! My wonderful husband and son will take turns occasionally accommodating me on a Sunday afternoon by sitting next to me on the piano bench and playing one hand while I play the other. I love my men!
Well, I introduce to you "Grace" born of lots of healing, occupational therapy, perseverance, and...
As much as I dislike that my body wakes me up at 4:30 am most days, I have noticed something special about my early mornings. I receive certain impressions, ideas, and inspiration in the wee hours before sunrise. Perhaps it is the quiet of the house, no interruptions from other members of the household. Maybe I am more receptive to spiritual messages when my mind is first alert and hasn't moved on to my personal to-do list. Who knows?
A couple of weeks ago, I had the strong feeling that not only did I need make the effort to go to the temple with my husband, but that we needed go with my husband's good friend/co-worker and his wife. Attending the LDS temple for an endowment session is not an entirely passive activity. I would need someone beside me to guide my weak hands. To help me walk from one room to the next, to tie the bows on my temple clothing. (To make sure I stayed awake the entire 2 hours!)
I imagined that my post- radiation and post-chemotherapy days would be happier, better. Suddenly my body would get a much needed break from R & C, a break from some of the medications prescribed to control side-effects, and I would start to feel... relief?
I am more miserable than ever.
I still have a long way to go. But I've come so far and that gives me tremendous hope. Less than 3 months ago I spent much of my day in a wheelchair, and needed help doing almost everything. I posted a video on social media April 27th that showed me extending my fingers the slightest bit and lifting my wrist a little. It took tremendous effort to do even these small movements.
After lots of hard work at occupational therapy (thanks Mindy and Abbey), dedication, prayers, and encouragement, here I am today 2 months after the first video, and 3 months after the surgery/stroke. I have incredible movement and range of motion - now I am working on muscle strength and fine motor coordination.
This is today, 7/3/16:
This is 4/27/16 (I've come so far!):
My six weeks are over! While I am SOOOOO grateful to finally be finished and to start recovering from the side effects of radiation therapy (hair loss, fatigue, memory loss, "sunburned" skin), I will miss my radiation therapists. They became my friends. I couldn't have asked for a better support team.
Today I got lots of hugs and I got to take my mask home. Some people come home and smash their mask to bits - therapeutic and symbolic. I'm thinking I should paint it glow-in-the-dark and wear it next Halloween... What do you think?
Please note that the following info is specific to my experience and largely gathered from my own observations - not technically sound nor representative of all radiation treatments.
A brief back story:
My amazing husband and best friend has been a state trooper for the Utah Highway Patrol for 15 years. When we were first married we were both poor, young, college students trying to complete our bachelor's degrees and it wasn't long before we had a new baby girl to love and cuddle. Soon after that, the company he was working for closed its doors. He felt a lot of pressure to provide for our new little family.
In looking at a new career, he disclosed to me that he had always felt like he should go into police work. I had a hard time adjusting to that idea. I come from a family of college educators and professors, many of whom have PhDs. And no guns in the house. It was strange (and scary to me) to think that there would multiple guns in our house and a husband toting guns and wearing body armor every day... So foreign to me.
A journal entry from the hospital April 17:
"I was grateful to be well enough to be able to attend church today in the hospital chapel. And grateful for the whisperings of the Spirit as I reflected during the sacrament. I was reminded of the baptismal covenants that I and others have made to mourn with those that mourn, to comfort those that stand in need of comfort, and to stand as a witness of Jesus Christ in word and deed (Mosiah 18:9, Book of Mormon). I am forever grateful for friends and family who have exercised their covenants particularly on my and my family's behalf as of late. And I was also reminded of times when I have been blessed with strength and ability to be the one on the giving end instead of the receiving end. Such tenderness and gratitude filled my heart and partaking of the sacrament today became a very sacred experience for me."
Email to my mama:
This night has been typical - went to bed about 10:30 and woke up at 4:30. A little to early for my liking, but my body is awake and there's no going back to sleep now!
A long time ago I asked you how it felt to be "shocky" as a type I diabetic. I kept pressing you and finally you said, "It feels like I'm dying." I've always remembered that.
We aren't a big nickname sort of family, but my parents have their pet names that they use for us on occasion. My mom has always affectionately referred to my sister as "Goldilocks" and to me as "Rapunzel" since we were both very young. She adored our long tresses and it wasn't until my teens that I was even allowed to have my hair cut above my shoulders. In fact, I'm surprised my sister and I have bangs in this picture! (Side note: my mom is a fantastic seamstress - pretty sure those t-shirts in the photo are homemade!)
Well, one of the effects of radiation is hair loss. I'm not exactly feeling the part of Rapunzel these days. It's not as bad as it could be, but it is unnerving and an unwelcome visual reminder of all the junk my body is going through.
My name is Andrea. I'm a Mormon mom in my 30's and I am fighting a rare type of brain cancer: Anaplastic Astrocytoma.