Radiation Treatment

May 2023 through July 2023

Must Continue

Three weeks after the surgery, with Jolynn still in the hospital, I had to keep going with my treatment and continue working full time. Thankfully, Ando was there to help me.

I met Dr. Adedamola Omogbehin, known as Dr. Mola, a radiation oncologist, on May 11 at the same hospital. His office was in the building next to Dr. Pierce’s. I first saw a nurse for health history and paperwork, then met with Dr. Mola to discuss the treatment, including the risks and benefits.

I decided to go ahead with radiation. For me, the benefits outweighed the risks.

Ando sat quietly, listening to the conversation.

"We’ll discuss everything in more depth on May 25," Dr. Mola said.
(Update: rescheduled to May 19.)

The treatment would last six to seven weeks, about two hours per day.

As part of the requirements, I went straight to my dentist’s office after that appointment. My dentist kindly saw me without an appointment. After a quick evaluation of my teeth, he signed the clearance form for radiation.

I sent the paperwork back right away.

Visiting Jolynn

The day after my appointment with Dr. Mola, I received a call from the hospital. I was allowed to visit Jolynn. Only one person at a time for one hour each day.

Ando and I decided to take turns.

I visited her first.

She seemed to improve as the days passed, but her discharge experience after two weeks undid much of that progress. It helped some, then it felt like everything was ripped away and she was sent back to the beginning.

It was difficult.

It was strange to see a psychiatric hospital work hard to help someone and then reverse so much of it with their discharge procedure. I wondered if communication barriers played a role. Was it because she is deaf? Do they treat hearing patients differently?

The supervisor who showed up did not do much to help. The situation added more stress on Ando and me as we tried to support Jolynn.

It was unbelievable.

Over the years, so many situations had built up. Jolynn carried much of it quietly while I was sick and dealing with my own treatments. Very few people recognized her needs. Many needed her, but not many checked on her.

She asked some of the closest people in her life for help. They declined.

The world felt heavy on her.

Communication barriers and the constant struggle to secure live ASL interpreters for medical appointments added unnecessary weight.

It was rough for all of us.

Post Op Follow-up

On May 19, I had my last two stitches removed. I felt much better. Dr. Pierce wanted to see me two weeks after radiation was finished.

I then met with Dr. Mola for a more in-depth discussion and to review the PET-CT. They gave me a tour of the facility and showed me the sample head mesh that would hold my head in place during radiation treatment. They pointed at the radiation machine. "Beta is your machine for the next few weeks."

It was an interesting tour, and it was a lot of information to take in.

I really liked Dr. Mola. He is funny. He made me laugh. He is clearly a caring person and made sure I understood everything we discussed.

Dry Run

On June 1, I came in for a dry run. They performed a CT scan and prepared me for radiation, which would begin on June 5.

They placed a heated mesh over my face. It started soft and then hardened into shape. It would hold my head still so they could target the exact same area each day.

I received my first tattoo. A tiny dot on my chest to align my body with the laser grid.

That small dot surprised me. It stung more than I expected.

I told Ando I got a Harley-Davidson skull tattoo. He just could not see it.

A tiny dot. The rest is imagination.

Six weeks confirmed.

Radiation Treatment

The first week was not too bad.

The routine became familiar. Check in. Change into a gown. Wait. Meet the radiation technicians. Lie down. Locked into the head mesh. The table adjusted until the laser grid aligned with the tattoo dot on my chest.

Close my eyes. Stay still.

The machine moved in and out around me.

During the second week, I noticed dryness on my neck and inside my mouth. The nurse repeatedly reminded me to apply lotion and avoid the sun.

I followed her instructions.

I applied lotion to my neck and face daily.

I saw Dr. Mola once a week. By the third week, my mouth was extremely dry and painful.

Dr. Mola prescribed Magic Mouthwash. I tried picking it up from Walgreens for two days but could not. My insurance declined it because Walgreens did not have the proper ingredients.

They directed me to a small pharmacy that definitely had the ingredients I needed. I took the prescription there and got it filled.

It helped somewhat.

Not much while eating, so I was given another medication to numb my tongue so I could eat. I was warned to be careful because I might not feel if I bit my tongue.

I raised my eyes.

I did not want to lose any more of my tongue.

The weeks continued. My neck turned red and dry despite lotion three to four times a day. Swallowing became harder, even water. My throat felt tight.

Once, at a restaurant, I choked trying to swallow food.

I had to chew much longer and slower.

On my last day of radiation, they asked if I wanted to take the head mesh home.

Sure.

As I walked out, they handed me a completion certificate and asked me to ring a bell.

I saw no point. I cannot hear it.

But the nurses and technicians had been kind for seven weeks. Some stood around me waiting.

So I rang it.

They cheered.

Chemo in 2012, checked.
Radiation in 2023, checked.