As anticipated, my phone punctually rang at 8:20 a.m. on Monday morning. I was introduced to a patient navigator who would serve as my primary contact. Armed with a barrage of questions and scarce specifics about my cancer’s stage or treatment plan, I received a list of appointments spread over the next week and a half. Strangely, she never asked about my availability, simply stating, “Your surgeon will see you Wednesday at 9 a.m.” The three-pronged treatment approach—surgery, radiation, and chemotherapy—was outlined, although the exact timeline for surgery remained uncertain until Wednesday, typically scheduled within 2-3 weeks.
Despite the daunting prospect of surgery, the idea of having the tumor removed within weeks brought a strange sense of relief. Wednesday morning, armed with optimism and a sturdy dose of pre-appointment coffee, my husband and I strutted into Rex. I expected a surgical roadmap, but instead, the surgeon hit us with a plot twist: “I’m sorry, but your tumor is inoperable right now.”
It was like an out-of-body experience—I sat staring at my CT scans while the surgeon explained how the tumor’s position near my sacral nerve posed too great a risk for surgery. I nodded along, but it felt like he was talking about someone else, not me. There was no reaction, no feeling, just a surreal detachment.
Fortunately, plans were already in motion with UNC Chapel Hill and Dr. S., a surgeon who specializes in complex cases like mine that make Grey’s Anatomy look like amateur hour. They also offered intraoperative radiotherapy (IORT), unavailable at Rex, and assured me that my care team was coordinated and ready.
Next up: Dr. B, my oncologist, who essentially said, “Girl, we’re gearing up like it’s a fierce fight for the perfect antique ginger jar at an estate sale,” because apparently, being young and healthy means my body’s ready to fiercely contend with cancer. At least that is what my brain heard. I think he actually said, “We are going to give you the most aggressive treatment given your age and health.”
A few days later, we met Dr. S. in Chapel Hill. Her PA was reassuring with a wealth of information, patiently addressing all my concerns. Dr. S. tentatively scheduled surgery for late November/December, giving me visions of a tumor-free Christmas. Festive, right?
Our plans for a beach getaway were slightly derailed as a Monday morning appointment with the radiologist postponed our departure. Disappointed about missing a day at the beach, I was nonetheless eager to wrap up the marathon of appointments.
Dr. F, the radiologist, then launched into a TED Talk on radiation and its side effects. These side effects sounded very manageable compared to the chemo pills. But the real kicker? Getting inked with permanent markers (aka tattoos) to guide the radiation beams. I anticipated starting treatment around mid-June, which seemed like a chill time to start treatment, only to receive a surprise call on Wednesday at the beach, notifying me that everything was set for treatment to begin the following Tuesday, right after Memorial Day. However, there was a catch—I couldn’t start radiation without the chemo pills.
Getting those pills was like navigating a labyrinth with a blindfold on. Upon receiving that oh-so-lovely email from my insurance provider announcing their grand denial of my prescribed medication, I did what any sane person would do: I dialed their number faster than you can say “red tape.” Of course, clarity wasn’t exactly on their agenda that day, leaving me with more questions than answers. Ah, the joys of insurance lingo!
Venting to my oncologist’s nurse was like chatting with a fortune teller who saw it all coming. No surprises there—this denial thing was becoming a regular soap opera episode. Together, we decided to try our luck with a revised prescription, hoping it might break the denial streak. Spoiler alert: it didn’t. Cue another rejection notice like clockwork the next day.
Days blurred into a whirlwind of pain, exhaustion, and a healthy dose of existential dread, all thanks to a bureaucratic maze. Picture me, at my lowest ebb, on the sunroom floor, tears making a lovely puddle as I navigated the Bermuda Triangle of insurance departments.
After 4 hours on the phone, I was finally transferred to a pharmacist, armed with a calculator and a knack for bureaucratic chess. His diagnosis? Maybe, just maybe, the dosage was playing hard to get with my insurance overlords. After some number crunching and a deep breath (or ten), we settled on a master plan: same meds, just more pills to swallow. Literally, twice as many pills per day. Because, you know, logic.
Lo and behold, after what felt like a month-long series finale on hold, my insurer grudgingly waved the white flag—just in time for my treatment. Ah, the absurdity of it all!
The weeks between diagnosis and treatment whizzed by in a whirlwind of stress and uncertainty. Tears were rare, mostly reserved for wrestling matches with my insurance company.
Once my prescription was sorted, I could finally breathe a sigh of relief and attempt to soak up some sun at the beach. Both my sisters crashed the party uninvited. Emmie, true to form, strolled in fashionably late. We skirted around my diagnosis unless absolutely necessary, treating this Memorial Day beach getaway like any other.
Despite still battling pain, the Gabapentin brought some much-needed relief. When I met the first surgeon at Rex, he quickly diagnosed my back and leg woes as stemming from my sacral nerve—turns out, my muscle relaxers, ibuprofen, and oxy weren’t hitting the mark. Within days of starting Gabapentin, I began to feel a glimmer of improvement.
Maybe it was the magical combo of Gabapentin, sheer exhaustion, and other pain meds, but time seemed to stretch out luxuriously. We called it “turtle time,” our vacation mantra, though this was a different kind of slow. I recall one sunny afternoon on the beach, watching my sister and brother-in-law play with my nephew in the waves. The sun kissed my skin gently, a light breeze keeping the heat in check. It felt like the world hit pause. I mentally bottled up that moment, and to this day, it brings a smile to my face.
I cherished every second of our beach escapade, knowing full well that once back in Raleigh, the serious business of treatment loomed large. I’m endlessly grateful for my amazing family and friends whose unexpected beach invasion provided just the distraction I needed from the impending whirlwind of doctor’s appointments.
I thought I was prepared for what lay ahead, but nothing could have readied me for the whirlwind of the coming months.