After the horrible experience of simulation was over I quickly settled into the daily routine of radiation, which went something like this
-Wake up, get ready
-Drive to Seattle
-Morning appointment at Children’s for Carbo infusion
-Drive to UW Med [which could take up to 45 minutes to go about 3 miles]
-Wait for radiation appointment
-Lay on uncomfortable table for 45 minutes to 1 hour
-Repeat again tomorrow (for 30 days)
I started radiation treatment a few days before Thanksgiving. I remember Dean, one of my radiation technicians, telling me I was lucky I started when I did because I’d still be able to eat Thanksgiving dinner (which happens to be my favorite dinner of the year.)
|My last haircut for over a year|
The effects of radiation are cumulative, so they don’t start right away. For the first two weeks of treatment I was feeling pretty good. No more massive headaches or nausea. By the end of the second week my hair had started to fall out. One morning I awoke to clumps of hair on my pillow and even more came out in the shower. I didn’t tell anyone all day. I had a haircut scheduled for that night to even it out after my surgery shaving. I did think about having Tracey shave it off, but I decided to have her just cut it even though I knew it was going to fall out anyway.
Around the same time other side effects of radiation and chemo began to set in as well.
I was incredibly nauseous and threw up several times a day. My diet became very limited and I was very sensitive to cooking smells. One time scrambled eggs even smelled too strong.
Over the next four weeks I became increasingly weak and fatigued. By the end, I had to be pushed in a wheel chair to get from the parking lot to the clinic and my dad would have to carry me up the stairs at night to get to bed.
|Radiation burn can be seen on my neck in this picture.|
It is also the only time I have ever been tanner than Megan.
Radiation also comes with radiation burn (basically very intense localized sunburn). For me, it appeared as a bright red stripe down my spine. It was very painful, but there were some suggested pain management techniques. My mom, being the mother of invention, rigged up a system for me. She taped a piece of moistening gauze slathered in Aquaphor lotion to the inside of a cami since taping the bandage to my skin would further irritate the burn. Radiation burn is so severe that there is actually a thing called after burn where the radiation enters through one side of your body, exits through the other side and leaves a burn on the way out.
On their last day of radiation, pediatric patients at UW get a beanie baby husky dog (UW mascot) and a certificate of completion signed by the doctors nurses and technicians. As I watched other patients leave at the end of their treatment, I couldn't wait for my turn. Finally, the last day arrived, Radiation Graduation (as my dad called it), and I couldn’t have been happier.
My mask is in my lap , inside it is my husky.
Without a doubt, radiation was the worst part of treatment. I didn’t want to go one day longer than I already had to, so I fought every day to get to the hospital. Some days it was a very close call and I barely made it out of the house on time, but I never missed an appointment.
Following radiation I had 6 weeks off treatment before I would start six rounds of monthly chemotherapy.
Run of Hope Total: $1,545
To contribute, please visit:
To contribute, please visit:
If we raise $2,500 by September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt! Thanks for your support!