Wandering Around with a Hole in the Middle of My Face | Part Four
My Ironic Facedown Tuesday Summer
2009 was a momentous year. Epic in extremes. It was full of celebrations, travel, and creative experiments. But it was also the year a tumor, that I later learned may have been lying dormant in my head for at least five, possibly as long as 25 years, decided to get aggressive and start growing with a spurt near the end that determined my fate. Off with her nose.
In May of 2009, we celebrated my oldest son Michael’s college graduation from the Academy of Art University in San Francisco. In June, I took two weeks off for my birthday to go on a road trip. Not just any old road trip. I had been preparing for this trip for almost a year. During those two weeks I drove around old California cowboy country as my alter-ego, Gloria Samsa.
The months of preparation included working with my favorite hair stylist in Santa Cruz, Leslie French-McCarten, to transform my auburn shoulder-length hair into a platinum blonde pixie. With each progressive lightening of my hair, I adopted new Gloria characteristics that I packed into my persona kit to unmask during my trip. My mission was not only to get my creative ya ya’s out but also to demonstrate a concept. I’d been promoting the idea of developing our company’s content using a Transmedia Storytelling strategy, but the language I attempted to use to help B2B storage executives understand that concept in 2009 failed. So I decided to show, rather than tell, how to develop such a story. I built a website complete with hotel and restaurant reviews, a Facebook page, and Flickr, YouTube and Twitter accounts so Gloria could publish a travelogue on-the-go, share photos and videos, and engage with an audience during her adventure. This two week excursion as Gloria could fill a book. I only mention it here because it explains my blonde hair.
Facedown Tuesday
Another creative outlet that summer was joining a Flickr Facedown Tuesday group. My daughter, Mary Heather, an early social media influencer in the world of knitting and crafting, was participating and persuaded me to join. I approached FDT as a kind of performance art sporting event.
My big finale took place in Washington, D.C. I was there with my skeleton video crew to shoot a customer story. After the shoot, Michael and Orjan, both friends and colleagues, supported my endeavor by accompanying me and standing guard over the compact camera and miniature tripod I set up to take selfies in various spots around the Nation’s Capital.
Posing for selfies like these around D.C. today might be construed as making a political statement.
The irony of spending my last summer with a nose, face down hiding it, is not lost on me. This is just one of many esoteric enigmas I would face in the coming years.
In 2009, I also filled up my Santa Cruz Mountain Wineries passport going to wine tastings on weekends, took a once in a lifetime trip to Venice, Italy, and visited my daughter in New Mexico for her birthday in October where we attended the Taos Wool Festival together. On the surface, it seemed I was having a great year. But inside there was a developing antagonist.
Migraines Kept Getting Worse
While I was traveling back and forth across the United States to capture customer stories that summer, I began to feel anxious. I had felt a little off for months, but it was during this cross-country trip that I knew something wasn’t right. There were two stops in particular where I experienced alarming episodes — headaches unlike any I’d ever had. They weren’t the most painful in my life, that happened in college when I had spinal meningitis. They were the most disturbing though. One occurred in Dallas. We were walking through the grassy knoll after our shoot on one of those sweltering temperature plus humidity days, when all of a sudden I became dizzy and felt like I was going to black out. I had to sit down in the shade for a bit before recovering enough to continue our sightseeing.
The other occurred in New York City. After our work was done that day, Orjan, Michael, and I decided to walk from our hotel to Battery Park and ride the ferry to the Statue of Liberty. As we were waiting in the Battery Park station, I started feeling dizzy again with pain shooting under the top of my skull. This time my body started to go numb. The guys helped me back to the hotel, escorting me to my room where I took my meds and went to bed. As I was laying in bed with what felt like fireworks shooting off in my head, afraid I was going to pass out, I thought about calling my colleagues to ask them to take me to the nearest hospital. But my meds finally kicked in and I was able to fall asleep.
Pre-Existing Condition
I have been a migraine sufferer since fourth grade so at first I just thought the increasing frequency and these two incidents were due to all my traveling and work-related stress, until I began noticing a growing list of other symptoms. My memory, which has never been stellar — I attribute this to having too many characters running around in my head all the time taking up space — went from not great to abysmal. It was hard for me to make even simple decisions, like deciding what toothpaste brand to buy or what to eat for dinner. And I started transversing my words, as though I had all of sudden contracted verbal dyslexia.
Finally, after months of tests and seeing specialists and insisting on seeing someone else when I didn’t get any satisfying answers — I was referred to a neurologist. He did the most minimal testing, like: “stick your arm out and bring your index finger to the tip of your nose” — ha, how would that work now? He dismissed me after advising that I take Ibuprofen with my migraine meds. This was after proclaiming, “You don’t have any tumors.”
If you feel rotten, you know something is wrong in your body, and you get brushed off by a physician, get a second opinion. Keep pressing until you get answers.
It took multiple visits to doctors in between my travels and insisting something was wrong before finally, in late December, I was sent for an MRI, the tumor was discovered, and I had a biopsy on New Year’s Eve. A week later the terrifying results came back. Cancer. But the biopsy couldn’t verify what kind. My tumor was possibly one of three types — each worse than the next. My doctors in Santa Cruz sent me to Stanford for further testing. As it turned out it was a hybrid of two types, primarily Mucoepidermoid Carcinoma, or MED. By then, it had grown large enough to be classified as high-grade. Not a great diagnosis. So in early 2010, I began my journey with the Stanford University Cancer Center. From then on, events sped by in accelerated motion.
Maybe I could have insisted earlier that scans be taken. If I had been diagnosed sooner, it’s possible my tumor wouldn’t have progressed to its eventual high-grade classification and I might still have a nose. But then again, if I’d had a nose, one day a bug might have landed on it when I was crossing the street and while swatting it off, I could have been hit by a car.
No sense looking back. Just keep swimming.
My next “Wandering Around with a Hole in the Middle of My Face” is about my unforeseeable experience with the 7 Stages of Grief.
Prior: “Wandering Around with a Hole in the Middle of My Face”
- Part One | A Sudden Unobstructed View
- Part Two | Radiation and the Importance of Physics
- Part Three | Coffee, Wine, Ice Cream and Other Nutritious Tidbits
