Cancer Again?!?

Fall 2022 through April 2023

Recurring Ulcers on My Tongue

For about a year or two, I kept going to Patient First because of recurring ulcers on the right side of my tongue. They tried different medications, but none of them really helped. I may have convinced myself at times that they did, but they did not.

The sore would calm down and then come back. Eating anything salty burned. Sometimes I even bit that same right side of my tongue.

In the fall of 2022, after another visit where they prescribed the same medication that had not worked before, I felt fed up. It was becoming routine. Go in. Get a prescription. Hope it works. It doesn’t.

Jolynn found an ENT and made an appointment for me.

January 31, 2023 - 3:30 PM.

All right, I hope this one is better. A real ENT, not just urgent care.

The spots on my tongue were annoying enough that I could not enjoy eating normally anymore.

Something was not right.

Bad Ulcers

January 31 came quickly, and we went to the ENT office.

I brought my brand new iPad with the Apple Pencil because I figured I would be sitting and waiting for a while like most other doctor appointments.

I had just sat down and pulled out the iPad when I was called back already.

All right.

A lady doctor came in and checked my mouth. She said it was an ulcer and wrote a prescription. I recognized the name right away. I had already taken that medication before, and it did not help.

I told her that.

She showed some concern and said she would prescribe a stronger one. If it did not work in two weeks, then it might be something more serious.

I was not thinking cancer at all at that time. Just a bad sore that needed to be dealt with.

After she left the room, I stood there quietly and looked at Jolynn for a moment. Then I picked up my bag.

My Apple Pencil was gone.

I told myself to relax. I was sure I would find it.

I went back to the lobby and looked around. Nothing.

I asked the front desk if anyone had turned it in. No.

Jolynn went back into the exam room and checked again. Nothing.

A one hundred dollar piece of tiny, shiny, white hardware.

Gone. Vanished.

I was disappointed in myself for not packing it back into my bag carefully.

Did Not Work

I went back to the ENT office on February 16 for a follow up.

I was still bothered about the missing Apple Pencil. I scanned the room floor again and asked the front desk if anyone had found it. Nope. It was gone.

I was disappointed in myself for dropping it. I was also disappointed that someone likely picked it up and kept it instead of turning it in. That part bothered me more than the money.

The same doctor came in to check my tongue.

Sure enough, the stronger medication did not work at all.

She said it was probably a bad one. Then she said it could be cancer and that I would need to have a biopsy.

I still did not think much about the word cancer. The pain on my tongue felt more real than the word itself.

I thought about my bone marrow biopsies. Those were the worst pains of my life. I figured nothing could beat that, so a biopsy on my tongue should be a piece of cake.

I agreed to have it done.

Biopsy on Tongue

I went back on February 28 to see Dr. Patel.

He was kind and friendly. He examined my tongue and began setting things up for the biopsy.

He asked if I wanted a numbing spray. I told him why not. He said sometimes it does not help much. I told him it would not hurt to try. He gave a slight smirk because it was going to hurt either way.

He sprayed my tongue and said he would come back in about ten minutes.

After a few seconds, the numb spray tasted terrible. I gagged. My tongue felt strange and the bad taste stayed in my mouth.

When Dr. Patel came back in, I told him it tasted awful. He said that probably meant it was working.

He took two small pieces from the side of my tongue.

Tiny pieces.

It stung, but it was nothing like my bone marrow biopsies. Those were on a completely different level.

Compared to that, this was manageable.

I could handle this.

Follow Up on Results

I went back on March 7 for the biopsy results.

Dr. Patel came in, but the pathology report was not ready yet. He told me to come back on March 15. No need to schedule. Just walk in.

All right.

March 15 came quickly.

While sitting in the lobby, I looked around again. I scanned the floor, the chairs, and the area near the front desk.

Still no Apple Pencil.

I was still annoyed with myself for losing it. And still bothered that someone probably picked it up and kept it.

One hundred dollars. Bye-bye.

I told myself I would never forget that.

Then they called my name.

I walked back into the same exam room where he had taken two small pieces from my tongue two weeks earlier.

I waited.

Bad News

Dr. Patel came in and did not take long to begin.

"I have bad news."

He said the biopsy showed cancer on my tongue. Squamous cell carcinoma. He said it was a bad one.

For a second, I just sat there.

I had a quick flashback to 2012 when my leukemia doctor, Dr. Schweizer, told me that because of my treatment, I might develop a secondary cancer in about ten years.

It had been a little over ten years.

Squamous cell carcinoma. I could barely remember how to spell it.

I sat quietly while Dr. Patel wrote a note. My mind was racing. Work. Home projects. Another announcement to family, friends, coworkers. I thought about how to tell people again.

It felt like everything slowed down.

He was only writing for a few seconds, but it felt much longer to me.

The room felt smaller.

I stopped thinking clearly for a moment. Then it settled in.

Another cancer.

Quick Action

"Please see Dr. Pierce at Washington Hospital Center as soon as you can. He’s a very good doctor."

Dr. Patel stepped out of the room.

I sat there for a moment.

Another cancer.

Even with the clear warning I had received back in 2012 about the possibility of a secondary cancer someday, it still shocked me.

Washington Hospital Center. I do not like driving in Washington, D.C. But it was probably better than driving back and forth to Johns Hopkins in Baltimore like we did from 2012 to 2017.

Dr. Patel came back in less than a minute and handed me a printout with Dr. Pierce’s information. A short bio. A picture. He pointed at the photo and told me to contact him right away.

I left the office and shared the news with Jolynn and Ando.

With Jolynn’s help, we reached out to Dr. Pierce at Washington Hospital Center. We talked briefly about whether we should also contact Johns Hopkins. It was on our minds. I told her it would not hurt to make this appointment while we considered other options.

An appointment was scheduled for March 27.

Things were moving quickly.

Scans

I went back to my primary care doctor on Friday, March 17, for bloodwork. I told Dr. Izzat about the biopsy result and handed him the report.

He nodded and ordered a CT scan for the following Monday. Neck and chest. They needed to make sure it had not spread.

Monday came, and I had the CT scan done.

Before I even met Dr. Pierce, his office scheduled a PET-CT for Wednesday, March 21, at the Nuclear Medicine Department at MedStar Washington Hospital Center.

I learned a few things about PET-CT before going in. A PET-CT combines two scans in one machine. The CT shows the structure inside the body, while the PET scan highlights areas where cells are more active. Cancer cells often use more energy than normal cells, so they can appear brighter on the scan.

Before the scan, they injected radioactive tracer into my bloodstream. After the injection, I had to sit quietly in a dim room for about an hour while the tracer circulated through my body.

No talking. No moving around too much. Just sitting and waiting.

After that, they brought me into the scanning room. I lay still on the table while the machine slowly moved over me, taking images.

I was surprised at how fast everything was moving. Appointments were being set within days, not weeks.

That told me this was not something minor.

This needed attention.

Otolaryngology

I arrived at Washington Hospital Center on March 27.

While sitting in the lobby, I noticed the word "Otolaryngology" on the wall. I stared at it for a moment, trying to spell it out in my head.

Oto. Laryn. Go. Logy.

It looked like a terrible word. "Oto" bothered me the most. I decided I did not like it.

Eventually, I was called back.

Dr. Pierce came in. Tall, young, and cheerful. I felt comfortable with him almost immediately.

Yeah, I think I’ll like him.

He examined my tongue and said he wanted to take another biopsy.

Number two.

I asked for the numbing spray again. He said it would not help much. I told him it helped the first time. He went ahead and sprayed it.

Same terrible taste.

I gagged again. I told myself it must be working, just like the first one.

He took another small piece.

It stung, but I kept thinking about my eleven bone marrow biopsies. This was still manageable.

Stage One or Two

After reviewing the CT scan, the PET-CT, and examining me, Dr. Pierce said it appeared to be stage one or stage two. It had not spread, at least not based on what they could see.

That was some relief.

The plan was surgery first. A tongue resection and a neck dissection. After that, we would wait for the final pathology results to decide whether I would need radiation or chemotherapy.

He explained the risks in detail. There was a possibility of a feeding tube through my stomach. I might not be able to eat normally for a while or none at all. There were risks of infection and other complications.

It sounded bad.

But there were no real alternatives. If I wanted to continue living, this was the path forward.

The surgery would take about six hours. I would stay in the hospital four to five days, possibly shorter if I could swallow. Recovery would take about three weeks.

If radiation or chemotherapy were needed, that would start about seven weeks after surgery.

Everything depended on what the lab found in the tissue they removed.

Ever since hearing the diagnosis, I felt a mix of shock and frustration. I was not done with my life. I did not want another long hospital stay.

This time, unlike in 2012, I did not promise anyone that I would be back to work quickly. I had said that before and was wrong. What I thought would be days turned into months.

Be positive, I told myself.

Just be positive.