The doctor called just as I was weighing whether to go for a run or continue to work through lunch. I was at my desk in my firm’s “open office”–the kind with no cubicles or dividers. The kind that hinders concentration and that’s particularly unfortunate when a phone call suddenly catapults your life from smooth sailing to tsunami. “Are you somewhere where you can talk?” she asked. I wasn’t, but I lied and said I was because you don’t ask that question unless you’re about to pipe bomb somebody’s life to bits and procrastinating the pipe bombing of my own life seemed imprudent. “I’m really sorry to tell you this over the phone, but you have cancer. The CT scan shows several lesions on your liver, and it’s spread to your lungs,” she said.
This was more than I’d anticipated from her pipe bomb inquiry. I guessed she might say “cancer,” but not “spread to your lungs.” I stood up and, holding the tear levy as best I could, shuttled myself to the nearest office-with-a-door-turned-storage-closet. There, among the stacks and stacks of my boss’s personal, charitable and business accoutrements, I spotted a box filled with unused composition books, each with a different inspirational message and image on the front. They were leftovers from a school supply drive for underprivileged kids–one of my boss’s countless efforts to help those less fortunate, despite his own evidently losing battle with a medium-grade hoarding disorder.
I fumbled for a notebook to write down what I was hearing and tried to organize my thoughts so I could formulate rational questions and not just “how the fuck could this be happening?”—a question for which I knew my doctor wouldn’t have a suitable answer. I quickly rejected the notebooks with phrases like “Dream” and “Believe,” and seized on one that proclaimed “ADVENTURE AWAITS.” The letters overlaid a picture of railroad tracks running toward an uncertain future. It seemed to fit. Surely, a new adventure was beginning and it would quite possibly feel like getting hit by a train, or at the very least getting chased by one.
I opened the book and began to write as my doctor explained what would happen next. She rattled off hospitals she would call to find a biopsy appointment for me while I wrote down “Oh fuck. I have cancer.” Not five minutes before, I was, I thought, suffering from an episodic ulcer flare up and felt silly about having gone in for a CT scan of my chest, abdomen and pelvis that morning. It was overkill, I told myself. But I was wrong.
Four months earlier, during the long July 4th weekend, a strange discomfort began emanating from the upper right side of my abdomen and into my right chest. It hurt to take a deep breath. My husband, step-daughter and I were visiting my in-laws in Connecticut, and I was reluctant to rain on everyone’s Fourth of July parade by making a big deal out of it. Eventually, I went to the nearby urgent care clinic where a doctor listened to my complaints, checked only the necessary boxes (my vitals, physical appearance and alertness were all “normal”), and gave me a prescription for an inhaler before scooting me out the door. After sucking on the inhaler with no improvement, I returned to the clinic later that day and demanded more tests. Something was not right, I insisted. Dr. Dipshit reluctantly agreed to do a chest x-ray, which he said looked normal, and he once again sent me on my way. (Gratuitous rant: a doctor with such a demonstrated lack of curiosity about a young, seemingly healthy adult’s complaints of pain should lose his or her license, but in this case will receive a very sternly worded letter written on my law firm’s stationery.)
The symptoms disappeared within a couple of days and life returned to our version of normal. My husband, an active duty Army Special Forces officer, was getting ready to deploy to the Middle East for one year. Friends and family speculated that my odd health episode was stress-related. I was admittedly worried about him and about the impact a year’s separation might have on our marriage, but I’ve never been one for psychosomatic ailments (I leave that to another close relative). Now that my symptoms were gone, I figured I really wouldn’t be taken seriously if I went to see my primary care doc, and I didn’t feel like spending more money with my high-deductible health care plan just to be told to go suck on another inhaler.
About a month later, I set off on a week-long vacation, reuniting with family and friends in Montana. Just as the fun ramped up, so did my strange abdominal pain. This time, I could barely force myself to eat and left my plate and pint of beer largely untouched at one of my favorite restaurants. That was enough for me to drive myself to the emergency room early the next morning. The ER doc and nurses in Montana were much less intent on cycling me through and out than the urgent care doc in Connecticut had been. They drew blood, asked lots of questions and had at least some curiosity about why a 36-year-old seemingly healthy woman on vacation would find it necessary to come into the emergency room early on a Sunday morning. But everything they tested came back normal. My liver and pancreatic enzymes weren’t remarkable. My pain didn’t indicate any risk of an appendix rupture or spleen issue, but one area of my upper right abdomen was sensitive to light pressure. “You most likely have an ulcer,” the ER doc told me. She gave me prescriptions for three different ulcer-fighting medications, and within 24 hours I felt better, my appetite came back and I accepted as fact that I had an ulcer. I had already cut way back on alcohol consumption, but now I cut it out almost completely, save for a special occasion here or there. I cut out acidic and spicy foods and resolved to reduce my stress level when I returned home and back to work. Problem solved.
Two months later, as Halloween and fall decorations reemerged from storage boxes and adorned the picture-perfect row homes of our neighborhood with ghouls and gourds, my stomach discomfort crept back in, along with a feeling of fullness far sooner than normal–“early satiety,” as they say in medical speak. I’d lost about seven or eight pounds since July, which I attributed to my new teetotaler lifestyle and the absence of “manly” meals every night with my husband since he’d been deployed for nearly three months by this point.
I decided it was time to confirm my ulcer diagnosis with my primary care physician. She examined me on October 27th, followed by an ultrasound on Halloween, followed a few days after that by the CT scan, followed by me sitting in an office-turned-storage-closet trying to figure out how the hell I could possibly have what sounded like a very serious and advanced case of cancer at just 36 years old.
The word “unfair” doesn’t even begin to do it justice. I just got my shit together within the last few years. Finally. I’d tracked down my elusive self-respect and grit after a trying time and an extended search party, and then found a man worthy of my love and life-long commitment who recognized that I was worthy of his, too. A man I married on a bluebird spring day just over one year ago. We’ve built a beautiful life together, with big dreams of more beauty and wonder to come. We certainly weren’t expecting this uninvited guest to show up and shit all over our beautiful life, but here he is, nonetheless. The bastard. Notions of fairness and cancer, it turns out, are not on speaking terms. They are somewhat like Hillary vs. Trump fans–they are not likely to ever work out a deal where they can find common ground, and one of them is inexplicably entitled and whiny while the other is a huge asshole.
The minutes, hours and days that followed my doctor’s call are a blur of tears, desperation, confusion, fear and worry that was only somewhat alleviated by a nightly half-Xanax with a Unisom chaser. My dad and sister flew to DC to be with me for the first frenzied days following the CT scan. My husband left his command post in the Middle East and returned to a battle he didn’t know how to fight on the home front. I wanted to reassure all of them I was going to be OK. I wanted to plug their tear ducts and wipe those looks of dread from their faces, but each oncologist we met with seemed determined to thwart my plans.
My liver, covered with multiple, large tumors, was not the origin of the cancer. The tumors were metastases, as were the smaller yet numerous lung tumors, of a cancer that originated somewhere else, the oncologists agreed. The big reveal came after what can only be described as a snail marathon in which a demonstrated lack of urgency seemed to infect the entire medical profession. My newly anointed oncologist, Dr. Kim, eventually confirmed the diagnosis: stage IV intrahepatic cholangiocarcinoma (cancer of the bile ducts), a rare cancer she assured me was “very treatable.” A brief follow-up visit with Dr. Google, however, suggested I’d be dead in 3 -to- 6 months. Dr. Google further informed me that healthy 36-year-old women do not get this rare cancer. People in their 70’s, more typically men, with an array of risk factors I do not possess get this cancer. But here I am, the special little snowflake I always knew I was, defying all expectations by getting into this elite club decades before entry is generally available.
The good thing about being an outlier is that means the prognosis offered by Dr. Google doesn’t apply to me either. I have to chart my own path here, with the help of doctors, healers, loved ones, and possibly a psychic or two thrown in for good measure. And so, I invite you to join me on this adventure. It may not be fair, but I’m confident it won’t be boring.
Note: All your prayers, positive vibes, good wishes, air kisses and ritualistic shaman healing dances–or whatever you find helpful in times like these–are welcomed and appreciated.