Catching Up, Part 1: Tests and Diagnosis

This is the first of a couple posts to catch up on the experience until now. I’m trying to get these out of the way over the next couple days, so I can stay current from there on out.

So, what made me first go to the doctor? I’ve been asked that question quite a bit, mostly by doctors. It turns out throat cancer is almost always found when it’s advanced because it’s hidden away and rarely painful or even noticeable for months.

H&N

Last November, I started feeling a tickle in the back of my throat. It made me feel like I needed to clear my throat all the time. Around the same time, I noticed that my neck was swollen under my chin on the left. The end result of looking down my throat was that nothing looked odd, and a biopsy of the swelling indicated it was a lipoma (benign). I had a full head and neck CT scan, which was clear. The lipoma shrank by half from a steroid shot I had to counteract an antibiotic allergy, so Dr. Kelly, my ENT doctor, said to come back in a few months if it hadn’t continued to shrink.

Fast forward to March. The swelling on my neck was exactly the same, but the tickle in my throat had gotten a lot worse. It was really noticeable, and my throat was starting to hurt. I noticed a swelling on the roof of my mouth, way at the back near my uvula. I went back to Dr. Kelly. He took one look and scheduled me for a biopsy the following work day. I’m an optimist and a realist. I knew the odds of it being cancer were very low, especially for my age, gender and general health. But I’m also a good judge of people, and I’d met with Dr. Kelly enough to know from his expression that this was serious.

Dr. Kelly did the biopsy on Monday, March 26. I hadn’t realized this would be a punch biopsy, which is just what it sounds like: imagine someone using a hole punch on your skin. He took three samples from my tonsil and one from the patch on my palate. Once again, I could read his face, his posture. Even though it seemed so statistically unlikely, I had a sinking feeling. But how could I go from a clear CT scan in November to something serious in March?

On Wednesday, I was waiting for the BART to go home when he called. He asked if I could talk, and I said yes, I was just waiting for the BART. He said, “I really hate to give you this news, but it’s cancer.”

I remember standing on the platform, holding my phone and blocking the other ear so I could hear. “What kind?”

“Squamous cell carcinoma, in your tonsil.” He went on to tell me he had lots of patients who had been treated and were walking around, cancer free. He said he knew I would be one of them. He said he would bet it would be HPV positive when the full lab results came in, which would improve its response to treatment. He said the treatment was really rough.

I’m still standing on the platform, in the same position. “Can you tell me what kind again?” I’m frantically trying to hear and understand so I’ll remember and I can look it up. He tells me again, and tells me a great oncologist at a local hospital would be calling me right away to schedule a consultation. In the middle of explaining more about the situation, I lost the connection.

My train arrived and I got on it and found a seat. My eyes stung but I couldn’t start crying–not on the BART, not around all those strangers. I took a deep breath and tried to research it on my phone but my connection kept going in and out so I couldn’t find out more. I couldn’t tell Charlie because I knew he was driving home. That’s not the kind of message you want a loved one to get via text while driving.

It’s a 35-40 minute ride on the BART. I didn’t really know what any of this meant yet. Part of me knew Dr. Kelly would always be honest with me, but another part of me knew you wouldn’t tell someone she was dying over the phone like that. You would say something to give her hope.

I thought about my life. I thought about my friends and family. I thought about regrets, and realized I only had one: there’s a set of stories (several books) that I’ve wanted to write for 20 years. For some reason, I never did. There was one major part of the plot I could never quite figure out, and there was always a reason not to write it.

That was it–my one regret. And in that moment, the blank filled in. There was a direct analogy between this darkness growing in my body, silently taking hold while my body struggled and failed to hold it at bay, and what my story needed. It solved the problem.

The reason I hadn’t written the book for the last 20 years was because it wasn’t the right time. Now it was.

The BART train arrived at my station and I rode the escalator up silently to where Charlie was parked outside. I got in the car and told him I had cancer.

Not all of my posts will be this dire or sad, I promise. The early days of dealing with this were definitely the worst, and the sun started coming back out for me by day two or three.

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