My Story: Part One: You Have Cancer
In January of 2018, I had just turned 35 years old. I was content with where I was in life. An avid traveler, a surfer, runner, cyclist, and general lover of life, I was happy. What I was most passionate about was surfing. I just loved and lived for it. I also had a secure job as an ESL Instructor at the local university and was surrounded by supportive family and friends. Life was good.
Until it wasn’t.
In February, I started having severe pain in my lower back. Initially diagnosed with a bulging disk, I started physical therapy, but six weeks later I was in even more pain. This was amid the beginning of the Opioid Crisis, so doctors looked at me suspiciously with my back pain with no clear origin. They were not going to dole out any narcotics, they told me. Plus, 80% of Americans have had back pain at some point in their lives, so why was I special?
Yet the pain just kept getting worse. My nurse practitioner kept looking at me suspiciously like I was just out to get narcotics. Except my pain was no joke. I had never been on any medications my entire life, and Advil wasn’t touching this. The pain got so bad that I kept making 3am trips to the E.R. where I would be hooked up to a morphine drip.
X-rays were taken, but nothing was found, and I was always sent home with that same suspicious look that said: there’s nothing wrong with you.
After several more weeks and several tearful phone calls with the nurse practitioner who was handling my case by subscribing nothing but physical therapy, I finally got ahold of her.
“I need an MRI. I KNOW there is something wrong with my body.”
She said it would just be a waste of $500, my copay. But finally, after several weeks of persistence, she ordered it.
So I had the MRI on April 16th, 2018. I was in so much pain, it was insanely difficult to lie on my back, and lie still. While initially the radiology tech told me I should hear back within 5 to 7 business days, after my MRI, he rushed to help me out of the machine with extra care as if I were his 90-year-old grandmother. As I finally stood up, he said, “Well you should hear back in the next 24 hours.”
That evening I got a call from the nurse practitioner, the one who looked at me the last 8 weeks like I was just out to get narcotics, the one who rarely returned my phone calls. “So, we found something on your MRI. There’s a 2 to 3 inch mass on your sacrum, about the size of an egg”
“A mass? What is that? Like a tumor?” I asked.
“Yes,” she said, “Most likely. We don’t know if it’s benign or malignant, but I’m referring you to the orthopedic surgeon…”
Benign or Malignant?
I couldn’t even think straight after that. I don’t know what I was expecting, but I wasn’t expecting this. A tumor? Seriously?
I knew tumors could be benign and that they didn’t necessarily mean cancer. Because me having cancer just did not compute. I was the girl that ran half-marathons, rarely went a day without exercise and put kale in her smoothie every morning. Cancer was for people who smoked, ate fast-food and drank excessive amounts of alcohol, all the things that repulsed me. I used to make my ex-husband eat his pizza outside; it wasn’t allowed in the house.
So it had to be benign. Something the doctors would remove surgically, and then I could get back to my normal life.
After apologizing profusely to me, the nurse practitioner wished me luck and told me to call her anytime I had any questions or concerned. Funny how once she knew I had this tumor, she was suddenly reacting like I wish she would have 8 weeks ago. Even though I had just been hit with some potentially bad news, I felt a twinge of redemption: See, there was something wrong with me. I’m not out just to get your narcotics after all, am I?
By that time, the ER doctors had prescribed me Norco. Within a couple more weeks, I would get onto Percocet, and even then, the pain medication barely scratched the surface of the pain I was feeling: intense nerve pain firing up and down both legs and severe throbbing bone pain, as if my pelvis was broken. Later, I would find that this destructive tumor was eating away at the bone. It was also involving and getting wrapped up in all my root nerves that ran from my sacrum down to my feet.
The Bad News
A week later, on May 7th, 2018, the results of the biopsy came in and guess what?
“You have cancer.” Bone cancer, a sarcoma, but not just any bone cancer, the rarest of all bone cancers: Sacral Chordoma, which only affects about one in every one million. Which means there’s very little research or known treatments.
“What we do know,” said the doctor, “is that this type of tumor is slow-growing, and that means we cannot treat it with chemotherapy.” Good, I thought, I wouldn’t touch chemotherapy with a ten-foot pole. I was also soothed by the sound of slow-growing. “It’s also resistant to radiation.” Ok, I said. So surgery, right?
“Right. Surgical resection of the sacrum is the only known and proven treatment for this type of cancer.”
“Ok, sign me up,” I said. “When can we do it. Let’s get this thing out of me.” By this time, I had been dealing with intense pain for three months, unable to surf, travel, sometimes I couldn’t even drive. I was just so ready to do whatever I had to do to get my life back to normal. I was constantly high on pain medications, unable to sleep at night. My whole life for the last three months had been one long, horrendous nightmare and I was ready to get back to my life, or take the necessary steps to get back to my life.
Little did I know, I would never get back to my “normal” life.
More Bad News
“Unfortunately,” Dr. H said, “The surgery is quite invasive. It requires resection (amputation) of your sacrum from S2 to S5. Because we need to remove the sacrum, we also need to remove the root nerves which control bladder and bowel function.”
“Wait, what? Are you saying that surgery is my only option, and that with this surgery…I’ll need to wear adult diapers for the rest of my life? At 35 years old? That I won’t be able to control my bowel or bladder function?”
“Yes, I’m sorry. But surgery is the only way…” What happened afterward is a distant memory. I just melted into uncontrolled sobbing and let my mom do most of the talking.
And just in case that wasn’t enough bad news…
I would go on to get a second opinion and then a third. And then a fourth. All four doctors (3 orthopedic surgeons and a radiologist) suggested surgery. “It’s the only way,” they said. “We’re so sorry.” I also learned that I would likely have to have a colostomy, and with all the hardware that would be going into my pelvic region, I was told I most likely would never be able to surf again.
Never surf again? I don’t know what was more devastating, that with this surgery I’d lose bladder/bowel control for the rest of my life, or that I’d never surf again. I was a beach girl who lived to surf. After each and every medical opinion, a loud and defiant thought kept running through my veins over and over again like a song stuck on repeat: there’s no way I’m getting that surgery.
Find out what happens next in My Story: Part Two