A Parapharyngeal Space Cadet

Screenshot from actual 2024 MRI. Yikes!

​Today was supposed to be the day the oncology surgeon would peel off the right side of my face to remove the questionable mass nestled between my jaw and ear. The parapharyngeal space, they call it. A rare occurrence. Four or five a year. But my body had other plans.
 
It started May 10th. Well, not really. It started in May of 2023 when I had a neurological scan to rule out MS and Parkinson’s as explanations for the increasing tremors in my hands and face. They were summarily ruled out when, after some nudging, the neurologist assured me the MRI showed nothing significant. Just everyday “essential tremors.” 
 
So when I woke up Friday, May 10th of this year with a jaw that wouldn’t close properly and was causing excruciating pain, I toddled off to the local urgent care. They sent me directly to the Valley Medical emergency room where the on-duty doc ordered a CT scan. When the results came back he told me, “The radiologist says the mass in your neck has doubled in size since last year’s MRI.” My response? “Mass? What mass.” After a few moments of “who’s on first” he realized I had no idea about a previous growth in my neck. He prescribed pain pills to get me through a couple of days, gave me a referral to an otolaryngologist (ear/nose/throat specialist), and told me to call the specialist and my primary care office immediately to make appointments.
 
When I got home, around 3pm, I called the specialist’s office. They would see me at 9:30 a.m. Monday morning. Two days later. Yikes. This felt serious. I called my friend Fred and asked him to come along to the appointment to catch any info I was too drug-loopy to get.
 
The specialist ordered another MRI, to be done as soon as possible at Valley Medical, and gave me a referral to “a UW specialist.” He indicated the “mass” might be a parotid tumor. While 75-80% of them are benign, the only way to know for sure is to remove them. It wasn’t until I got home and googled the “UW specialist” that I realized I was being sent to a Fred Hutch surgical oncologist. Wheeeee.
 
I googled like crazy and read everything I could about parotid tumors. There’s a superb video series produced by the Mayo Clinic. I got ready to have my face peeled back. A free, albeit one sided, facelift! I was ready!
 
I called to make an appointment at Fred Hutch and was told I had to wait two weeks for the full referral to come through because it hadn’t been marked “urgent.” Two weeks later I called and was given two options: wait until August 28th to see the surgeon I was referred to or see another surgeon from his practice on June 27th. I know my brain, and I knew it would be possible for me to handle anxiety until the end of June, but definitely not until the end of August, so I took the second option. As an added bonus, the scheduler said, I would be meeting the radiologist who would be doing 6 weeks of radiation after the surgery if the removed tumor was malignant.

Over the next month, my jaw slowly released. I went from eating a half-teaspoon of yogurt or ice cream at a time to mashed potatoes and eggs. I could speak a few words at a time and increased to whole sentences. After several weeks, I was almost back to normal.
 
Friend Jan went to the Fred Hutch appointment with me since she lives close by and is a meticulous note taker as well as a wonderful human. The radiologist came in with his assistant and they hemmed and hawed and wouldn’t make any definitive statements. My brain was going to all the weird places it goes when people are being hedgy. Finally the surgeon walks in and the radiology team leaves.
 
Apparently the recent MRI was the cause for hedging. It showed the “mass” had shrunk by 50%. “Cancer doesn’t shrink,” is what the surgeon said. She then went over the MRI results and said they were completely dumbfounded by the finding. She had presented it to their weekly tumor board and no one had seen anything like it. She explained it was not a parotid tumor, but a parapharyngeal space tumor, much more rare and much harder to get to. It sat between my jaw, vagus nerve, carotid artery, and facial muscle. Touching any of those could cause temporary or long-term facial paralysis, even stroke. It might require breaking my jaw to get to it. And now that it was smaller, she would need to consider how to find it.

Oh boy. Good news: smaller. Bad news: smaller.
 
She would explore ways to get to the tumor and call me with some options. A few days later she called to let me know she would be using a probe to find it. My internal reaction was a combination of “Honey I Shrunk the Kids” and Star Trek. This was going to be unexpected, creepy territory.
 
The surgery was finally scheduled for today, October 18th. The surgery coordinator called to ask a bunch of questions and tell me how to prepare. He explained how long I would be in the ICU, and in the hospital generally, and what care I would need afterward. The wheels were turning. It was real.
 
I experienced a new set of emotions: high anxiety. I’ve had cancer before, and many unrelated surgeries, but the thought of having part of my face peeled off was a new one. I thought about all the people I’ve known over the years who had physically transformative events. Had I been compassionate enough? Had I listened to them deeply enough? Had I been a good friend?

I developed a mantra: There are things I cannot control and things I have agency over, I will focus on the latter. Thank goodness for work!!! The minutia of daily tasks was never more welcome. I told a handful of people about my circumstances, figuring it would be best to tell more after I had a definitive answer to benign/malignant. I prepared all my work tasks for a two-three week absence. My face would be out-of-office, but my hands and brain would be functional once I got off the pain meds.
 
In early September an email from the surgeon’s team said she wanted me to get another MRI, this one at Fred Hutch so they could use their super-duper MRI. She would use this new MRI to guide her in finding and removing the tumor. I had the MRI on September 9th. The results were available on MyChart two days later. After the confusion of the 2023 MRI, I had taken to reading these test results in detail to garner questions for the doctors. This one, though, I cried. There was no longer evidence of a “cyst.” It was gone. Downgraded from personal tsunami to tropical storm to sunshine, bunnies, and unicorns.
 
With cautions, I shared the MyChart summary of the results with my family, as well as Jan and Fred, and waited for the surgeon’s office to call. It occurred to me she may not review it until closer to the surgery date, given its purpose, so on the 16th I emailed her team asking if, given the MRI results, the surgery was still happening. They emailed back the next day to let me know she would call me once she had time to review.
 
Wednesday, the 19th, she called to confirm the surgery would be canceled. She took it to the tumor review board and her surgery partners were astounded. They had never seen anything behave this way. Their theory is that the May 10th incident was an infection attacking the tumor in a way that depleted it. Unheard of. The tumor/cyst was gone. I will have another MRI in December to make sure there’s no additional mystery happening there.
 
My brother’s response to the entire drama encapsulates it: "Why can’t you have something normal for once?" Yup, that was my exact response from the beginning.
 
Some friends have attributed this as a miracle wrought by a deity. This is one of the reasons I’m an atheist. Any deity who would spend the time to spare me while simultaneously allowing babies to be bombed and burned alive is a monster with an abhorrent ethos I want no part of. Any deity who creates a species, divides it with favoritism, then picks small patches of earth for them to fight over is the personification of evil. Why would I give them one iota of my time or energy? Why would I give them credit and diminish this lovely gift from my own body?
 
My body, like everyone else’s, will eventually run out of energy and shut down. In the meanwhile, I’m grateful for its lovely idiosyncrasies and the reminder to live in the daily mystery. And maybe, just maybe, this was dress rehearsal for the eventual shut-down sequence, and a lesson in deep listening.

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