Ready, Set, BLAST!!!

SWMC would be getting a Cyber Knife machine in the Spring of 2006, and it was our hope that they would be able to zap my tumor with this high-tech machine in one session. After careful consideration, however, it was decided that even the cyber knife would be too risky for this delicate part of my brain. So my expert physicians decided that I would pursue the traditional six week course of radiation treatment. I trusted them. I knew that they didn’t want to perform an unsafe procedure on my brain.

Dr. Scott Schneider would be my radiation oncologist. He had me set up with a face mask that would keep my head still when they blasted my tumor with radiation beams. The mask was fitted to my face and would hook to the table on which I would lie down. My first session was designed so they could set up the markers on the mask where the beams would go in. They put tape on the mask and marked it with different colored markers.

Dr. Schneider explained to me that I would have about 6 points on my head where beams would enter and exit. I would come to the Cancer Center every Monday through Friday for 6 weeks for a total of 30 sessions. Dr. Kolibaba, whom would come to be known as Dr. KK, had instructed me how to prepare for each radiation session. I was to take my Protonix (a proton pump inhibitor to decrease acid in the stomach) and my Zofran (anti nausea med) a half hour before I took my Temodar (chemo med). The Temodar was to be taken before leaving for radiation, preferably with a high protein meal or snack. I also had to fit in 4 doses of Decadron (steroid med for inflammation) each day. This would help reduce the radiation-induced inflammation that was likely to occur.

It was difficult to eat a high protein diet, as I hadn’t eaten meat in many years. My husband would make fruit smoothies and add protein powder. Dr. KK also told me not to take any vitamins over the daily allowance. I bought some kid’s gummy vitamins, since most of the adult ones go overboard. These instructions became my routine for the next six weeks.

I really liked the employees at Northwest Cancer Center. Stephanie, one of my radiation technicians, had gone to high school with my husband. Stephanie was also the name of one of my sisters, so it was easy to remember her name. I got along very well with all of the technicians, and I didn’t mind going to radiation at all. It was fairly quiet and didn’t take long to do. I would check in at the front desk by writing my name on a board. Then I would step behind the first doors and sit at the “puzzle” table. There would always be a jigsaw puzzle to work on. I never really got any pieces placed, as my vision was still poor. I usually sat with my husband, sister, or mother, depending on who had driven me to treatment that particular day.

I was feeling pretty good, mostly because I felt like we were getting the show on the road finally. I really wanted to beat the hell out of this thing. I wanted to make it sorry it tried to invade my brain. I actually kind of enjoyed going to radiation because I knew it was fighting this tumor.

On Mondays, I would see Dr. Scott Schneider, my radiation oncologist. I didn’t mind this so much, except I hated getting weighed. Despite going through chemo and radiation, I had gained a little bit of weight, probably due to the steroids I was taking and the lack of exercise. I was in no shape to exercise, however. I just went to my treatments and went back to bed when I got home. I would sleep again until evening. I would usually awaken to my husband turning on the gas stove to cook dinner. He took such good care of me.

I was doing pretty well for the first couple of weeks. During one of my appointments with Dr. Schneider, he found that I had oral thrush, which is a fungal infection in the mouth. This was common, given that my immune system was down from all the treatments. He prescribed an antifungal to get rid of it, and I was back on track.

Dr. Schneider thought I was doing well enough to start tapering down on my steroids. I was glad about that. My face was becoming very large, and my radiation mask was getting tight. It was causing some anxiety during my sessions. He started tapering me down on the Decadron, but I was anxious to get off of it. I decided to speed it up a bit. I didn’t realize this yet, but I was starting to get confused and I was tapering the drugs too fast. As a result, I got weaker, and I took a fall in my front yard. My sister, who was picking me up for a massage, saw this and helped me up. I revealed to her that I had been tapering down off my steroids, but that I had expedited the process.

Since I was becoming weaker without my steroids, I came clean with Dr. Schneider, and told him I had tapered faster than he had prescribed. Now I had to go back up on my steroids. Even though I hated how these drugs made me look, I knew that I needed them to keep the inflammation down in my brain. No more doing things on my own. I had learned my lesson.

The last couple of weeks of radiation and chemo, I was definitely feeling weak and confused. I could no longer walk without assistance. I couldn’t get myself into bed. My radiation sessions were causing some anxiety due to my weakened condition and my bloated face making the mask tight. The radiation technicians allowed my husband to walk me back to the room, since I was so unsteady and anxious. I was afraid of falling off the table. I couldn’t get up without help, and it scared me. Dr. Schneider’s colleague, Dr. Carrie Gotkowitz, prescribed some Ativan for me to take before radiation treatments to help ease my anxiety.

Not only was I becoming physically disabled, but I was mentally fuzzy as well. I couldn’t grasp the concept of schedules or times. I kept asking my husband when I needed to go back for radiation. He kept telling me that we only went once a day. I couldn’t understand simple concepts. I kept thinking we went more than once a day. My husband was so patient, and I could hear what he was saying, but it wouldn’t process. I’d never been so confused in my life. I was also doing what is known as “pill rolling.” This is a movement where your thumb and forefinger roll an invisible pill back and forth. This is oftentimes a symptom of Parkinson’s Disease. I’m not sure why I had these symptoms. Dr. Schneider didn’t seem to think it was an effect from the radiation. I wonder now if my dopamine levels were being affected from the treatment.  I’ve since read that there are many dopamine-producing neurons in the midbrain.  I now believe that my dopamine levels were decreasing during radiation.  Luckily, though, my pill rolling days are over.

My mother, who is a registered nurse, noticed the pill rolling, and I was aware of it, too. It was involuntary. I tried to stop it, but I couldn’t. My blood sugars were affected by the steroids. My mom would check my blood sugar, and I recall that one time it was 297. Normal blood sugars were between 80 and 120. I had such a bad field cut on the left that I thought the reading was normal, 97. My mom pointed out the 2, and I had to focus really hard to see it. All of the side effects and symptoms were starting to get me down. But I was almost done. April 14^th would be my last radiation treatment. I was anxious to be finished.

Friday, April 14^th came, and I got to ring the bell, saying that I was finished with my treatment. My family celebrated my accomplishment with me at Olive Garden. I don’t remember this very much. I was weak, and I spilled a lot of my food on my clothes. Would I ever be “normal” again?