MY PET SCAN was scheduled for Wednesday, June 8 at 8:30 am. Between my mom and I there was no sleep until the PET scan. Tossing and turning all night, researching tirelessly all day. This was the diagnostic scan, the one in which they would tell me how serious this sarcoma is. What stage are we looking at? What’s the prognosis? If you’ve ever wanted to have your fortune read, this would be the moment. Would I die in the next two, three, four years? Numerous panic attacks ensued.
Our research had revealed a lot: this is a rare, high-grade sarcoma — 300 cases a year in the US. Quite literally a one-in-a-million chance of getting it. Not preventable, not predictable. Occurring in the connective tissue near major joints. Synovial sarcomas are genetic mishaps, not hereditary, but rather crossed chromosomes that don’t right themselves. No one really knows the cause [right now], but it usually affects people around the age of 30, and favors males more than females. These types of sarcomas require combo treatments and sometimes amputation. In case you’re wondering, the photos, stories, and research on these types of things are what keep me up at night.
We arrived early to NYU for the scan — both of us with so much anxiety for what lay ahead. Dressed in my comfiest cashmere leggings and softest modal tee to avoid the hospital gown at all costs. IV in place, I drank the cool, milky coconut substance and let the radioactive glucose isotopes stream through my body. What would these chemical compounds reveal? How would my future be foretold? Looking in the mirror just before the scan, I was trying so hard to keep it together. Was this reality? So much worry. The next hour and 45 minutes that followed were the longest of my life.
Lying, wishing, waiting for my future to reveal the best case scenario, I couldn’t help but think back on the few weeks and years the preceded this moment: I had some soreness in my shoulder that started before I moved to NYC years ago. Suggestions of a pricked bone from a flu shot or soreness from frozen shoulder surfaced time and time again. At every doctor’s appointment, I made sure to mention my shoulder pain, the limited mobility, and each time it was brushed off as this or that. It had been years that this pain had hung around, over time getting a little bit worse, and now I regret not pushing to fully investigating it further in those early days.
You would never think a sore shoulder could mean cancer. I’m a generally healthy person — never really sick, I was on the ‘I’m-under-30-never-gets-sick’ catastrophic insurance plan. Having never missed a day of school K-12, this insurance plan seemed sensible — I am super careful [always the ‘mom’ of the group taking extra precautions], take no meds, eat fairly healthy, am somewhat active, and have a strong immune system. My weight has been consistent since senior year of high school, no major illness, no hospitalization. Cancer? The thought of that seemed worlds away.
A month prior, I had gotten out of the shower and noticed a bump had appeared on the sore spot between my left shoulder blade and back of my shoulder. I was home between shoots and apartment hunting, and showed it to my mom, an RN, who could barely see what I was talking about. I was worried and upon further inspection noticed that my shoulder blade seemed to be poking out a bit — my left back muscles seemed missing. No wonder I had little strength left in my arm. Carefully watching the bump over the next couple weeks, it was seemingly getting larger. On my next trip back to NYC, I made a point to see an orthopedic surgeon about this mysterious swelling.
The X-ray in mid-May had revealed some calcification in my shoulder blade and the shadowing of the bump seemed quite alarming to Dr. V. I had so many questions. Why was there calcification in the muscle of my shoulder? The word ‘tumor’, I realize, was perhaps purposefully never mentioned to me. After thorough examination, he insisted on an MRI ASAP, you could sense the concern in his tone.
“Do not wait,” he said —
“you won’t wait, right?”
The following day at 8 am, he called to see if I had made the appointment. That week, I was in a hospital gown going through a tube with magnets loudly spinning around me and attempting to breathe shallowly despite the overwhelming panic of the unknown. I began my googling to the depths of the internet in search of answers: a partially torn rotator cuff or frozen shoulder seemed further and further from reality. Calcification in the shoulder wasn’t totally a rare thing though — videos and research documents online revealed a couple theories.
The results of my MRI came just a few days later on the following Monday. I was still in NYC for work meetings, a wedding, apartment hunting, and trade shows. Between the busyness, I was scouring the internet for answers to my questions given the slight clues here and there. Dr. V instructed me to go to Dr. T for the results. He gave me the address, and I dipped out of a meeting at HarperCollins to get my results.
I arrived dumbfounded. I was walking into a full-blown cancer center and totally not prepared for it. Did I have some form of cancer? What was I doing here? …Maybe the orthopedic surgeon he had referred me to just has an office here and is seeing patients here today… but wait, they are getting financial information and wanting to know who will take over my expenses if I die… uhhh… As I looked around the waiting areas — chemo patients, older folks with breathing machines, and quiet family members waiting for loved ones, I’m sure panic was written all over my face. What was I doing here? I’m young and healthy. I quickly learned to avoid going to these types of appointments alone.
My appointment with Dr. T, the orthopedic oncologist, was short and with only a few more clues. He scrolled through the imagery and showed me the mass in my shoulder and I recorded a video of the imagery. The report didn’t say too much, but discussed the size and location of the mass. He threw out a few possible suggestions of what it could be — a desmoid or something else. Desmoid, I thought, okay, this is something to go off of. A biopsy was scheduled for the following week.
At that point it was the end of May and my triplet sisters were still in school, preparing for final exams and wrapping up big projects. I was back and forth — jokingly a ‘trainsetter’ — between NYC, DC, and Richmond where my family lived. My parents had planned a much-needed getaway to Charleston. I would watch the girls while they were out of town and our neighbor would cover while I headed back to NYC for the biopsy. Life seemed fairly normal.
While I finished up the PET scan, my mom was busy talking with the social worker, finding out info on fertility preservation, talking with my dad, and who knows what else. Like me, I think staying [good] busy is the key to not letting your mind wander. Fortunately for her she was allowed to read and talk while awaiting the PET scan; I had to lay still with only some music streaming through my ear buds. No phone interaction, no reading. Just me and my thoughts. No bueno.