Radiation

Being a word lover, somewhere on the spectrum between a logophile and a logomaniac, makes names very important to me. When we were in the ER, and I saw my tumor for the first time, illuminated on the screen, I knew this needed a name. After a few days, the perfect name came to me. Bittersweet. Knowing that it is bitter to be diagnosed with cancer, and yet, sweet, knowing that God uses all things for good. In God’s economy, He doesn’t waste a bit of our sadness or pain or tears! That is bittersweet!

Of all the different kinds of brain cancer, I have a glioblastoma multiforme (GBM), the most malignant. Of all the different grades, I have grade 4, the most aggressive. These tumors are difficult to completely remove because they entangle themselves in healthy brain tissue. They often put down roots in “prime real estate”, brain tissue too valuable to risk damaging with surgery. On the day of my surgery, the tumor was 5.3 cm long, 4.0 cm wide, and 5.6 cm tall. Because the average GBM-4 grows at a rate of 1.4 % per day or doubles every 7 weeks, if they hadn't removed Bittersweet, it probably would have taken my life by now.

Following surgery, I was given 28 days to allow brain swelling and the 9-inch incision to heal before starting chemo and radiation. During this time, I noticed how fast my fingernails were growing. This made me nervously aware of a bitter reality - the tumor is still growing in my head. This made me anxious to begin radiation and chemo as soon as possible in hopes of slowing the growth of Bittersweet's roots.

This month of healing also included Christmas, and spending time with all of our children and grandchildren. With all of the distraction of this “cancer nonsense”, Ken and I had not prepared for Christmas! We talked it over and decided to do four things to celebrate. Our grandkids hung the wreath on the woodshed, they set up the nativity set, we read Twas the Night Before Christmas together, and we had a shopping spree at Evans where they each got to pick out a few gifts for themselves! This time together was very good!

To begin the next phase of treatment, radiologist Dr. Longo at Froedtert West Bend, took new MRI and CT scans to map the remaining tumor cells, a process similar to the one I had for the IMRI surgery. The 3D imaging was used to set up computer programs that plan the delivery of radiation using an Elekta Infinity LINAC. This machine uses “high definition dynamic volumetric arc delivery”, or highly focused radiation beams, to reduce radiation exposure to surrounding healthy brain tissue. 

Next, I was fitted with a custom made “mask” that secures my head to the treatment table and keeps me in the exact same position for accurate delivery of all my radiation treatments. While lying on a simulation table, two therapists placed a very warm, wet plastic mesh film over my face, shaped it around my head, with openings for my eyes and mouth. It cooled and hardened in about 10 minutes. The fit is very tight on my upper jaw, which makes my jaw sore, but prevents even the slightest movement.

On the evening of Sunday, December 27, I started chemotherapy using temozolomide, or Temodar, which makes the remaining cancer cells more sensitive to the effects of radiation. Chemo can cause nausea, so one Zofran tablet is prescribed 2 hours after dinner. An hour later, at 8:00 pm, I began taking the chemo. Chemotherapy is taken at home every evening, for 42 days. 

My treatment schedule includes 30 daily radiation treatments in West Bend, for six weeks, Monday through Friday. My first radiation zap was Monday, December 28th. While pinned to the table, with humming machines encircling my head, a thought came to me. I am knowingly exposing my brain to radiation, after all the years I’ve avoided standing too close to the microwave oven. How ironic. And so it begins. 

As I lay on the table, I look up and see myself in a mirror. Horrors! Is that me and my eyes looking back at me? I don't recognize me! I don't recognize anything! It seems so science fictional. The word barbaric is hard to chase out of my thoughts. There are probably thousands of other mesh masks, shaped by the faces of others, just stacked in some dark hospital storage room. I think to myself, “Chase away the word barbaric. Just breathe! Be still, He is God. He's got me, even in this, especially in this.”

What if there’s an emergency? How do I, or even can I, release myself? How can I get myself free? The sympathetic nurse reluctantly shows me how to release the five pins, “but only in the case of an emergency”.

After ten minutes, I’m released from this face trap and clumsily recombobulate my earrings, glasses, and sweatshirt. I go to find Ken in the waiting room. When we get outside, I rip off my COVID mask and the tears begin to flow. To get through the next 29 zaps, I decided to do something for myself. I am going to memorize Twas the Night Before Christmas and recite it during each radiation session. Attempting to lighten the stress, Ken asked, “Want to put some microwave popcorn in your pocket next time to see what happens?”

You don’t feel anything while getting radiation, just like you don’t feel anything while getting an x-ray. Some side effects are “sunburn” and hair loss in the radiated area, memory loss, depression, overall fatigue, and muscle weakness. A baseline neuro evaluation was done to measure any neurocognitive and memory loss from the treatments. I have blood drawn every week to see how my platelets and white blood cells are faring. Low platelet counts would mean I won't clot well, and a low white blood count would mean I won't fight germs well.

February 8 will end this first phase of treatment, then one month of rest and another MRI. Phase two begins in March with chemotherapy alone. The oncology team will keep an eye on the tumor’s progression with an MRI every two months for the rest of my life.

The Elekta Infinity LINAC radiation machine in West Bend

Ready to begin one of 30 radiation treatments

The rigid "mask" securing Nancy's head to the table

Recent Photos

Jan 9, 2021 - Celebrating Matt's 30th Birthday

Carolina Wrens hanging around for several weeks, one visiting the feeder