I got a phone call from a number in Bethesda, MD. I declined the call because I was working. It was a young researcher at NIH. She left a voicemail informing me that they wanted to publish some of the images from my last visit, and would I please give her a call back.
We spoke. She said that they were publishing a paper about cardiac paragangliomas in a journal and that the journal required my consent for use of my de-identified images (How am I ever supposed to get famous if no one knows its me!?!?). And would I sign a form giving that? Certainly.
Sitting next to R eating breakfast, I see the email with a copy of the images and the abstract for the paper. The gist of the article is this: These tumors are rare and we don’t know a lot about them, but here’s what we’ve seen lately. I look at the images, a PET scan and a cardiac CT, marked with arrows pointing to the paragangliomas in my neck and right atrioventricular groove.
“Do you want to see something interesting?” I ask R.
“What does interesting mean?” he replies.
“It means something unusual or cool.”
We look at the pet scan which shows a shadowy outline of my body containing the darkened shapes of liver, brain, kidneys, bladder (pee pee is funny :).
“What’s this? What’s this? What’s this?” he asks as he points from structure to structure, dotting my computer screen with tiny fingerprints. We talk about each of the visible organs, how they put a chemical in the vein of my arm which is why there is a dark line from that arm leading to the structures in my torso.
He asks about the colored arrows pointing to black circles. “Those are pointing to my tumors. It’s a little spot where something is growing that shouldn’t be.”
Then he moves to the pictures of my heart. We talk about ventricles and atria and how the heart squeezes itself. “Is that a pig heart?” What on earth!?
“Um, no it’s MY heart!” Where has he heard of a pig heart? I may never know.
He turns back to his breakfast and cartoons. I close the laptop and put my dishes in the sink. I want cancer to be normal to him. I don’t want it to be scary and pee pee IS funny.
I met with an ear, nose and throat surgeon in December. If you have a carotid body tumor, reportedly he is THE ONE to remove it. The surgeon looked young, probably about my age. He said the tumor was small and slow-growing and he saw no reason to remove it. He thought that my primary care could manage the follow up, ordering MRIs annually to measure it.
I told him NIH had recommended it be removed once it got larger than 2cm. He didn’t see much reason for that guideline. So we parted ways with the unremarkable watch-and-wait plan I’ve been on for the last 15 years.
A few days later I got a phone call. I was with my sister picking up her kids from school. It was the surgeon. He said he ran my case by his colleagues at a case conference, radiologists, oncologists and surgeons. He said that his colleagues felt he should have offered me surgery. “You’re young and the tumor is small. It’s easier to remove when it’s small. So if you want to go ahead with surgery, now or in the future, just let me know.”
I told him I was planning to return to NIH sometime in the next six months. That I would see if it had grown. I reminded him of the 2cm recommendation. “I don’t think there’s any reason they drew a line at 2cm,” he remarked.
I laughed, “I figured it was because they got tired of taking carotid body tumors out of everyone.” He didn’t laugh. He’s a surgeon. He’s not supposed to laugh, at least not while his patient is conscious. I told him I appreciated the call and that I would be in touch if I decided to have him remove it.
And I’m going to watch and wait for now. This year doesn’t feel like a cancer surgery year. I want to use my vacation time to spend a week solo on Kauai and take R camping with my family. I want to play the piano and sing. SINGING! I might not be able to do that after the surgery. There’s a chance it might change my voice forever. I’m just starting to FIND my voice again.
So I’m going to watch and wait with my little friend in my right neck, wrapped around my carotid artery. This is living with cancer. In March it will be 15 years since the initial tumor was discovered. That’s nearly one third of the years I’ve been alive.
When I’m 80, I’ll have spent 3/4 of my life with cancer. Maybe I’ll still be afraid every time I go for follow up testing. Maybe I’ll get over that. Maybe I’ll paddle my wrinkly body out into the ocean to surf every day and get chatted up by the old men on longboards who’ve smoked too much weed for too many years. Maybe I’ll know something more by then.
This year, I’m just going to live–how ’bout that, cancer?!
You are beautiful inside and out!
Love you, Lisa! ❤️
Love this! Thanks for sharing, M. Cant wait to see what that pig heart of yours will come up with next!.
Haha! I guess that is my Chinese birth year…so maybe I do have a pig heart 😂
Never thought about it changing your voice. I would be crushed.
Informed consent for this surgery is a little gnarly 🙂