You’re in for a treat because we’ve got not one, but two literary gems coming your way this week! But before we proceed, let’s address the elephant in the room – my journey has been no walk in the park. In retrospect, I, along with my family and medical team, perhaps overlooked some warning signs. My intent has always been to share my experience candidly, in the hopes that it may offer solace or insight to others. So, here is a raw reflection on what undoubtedly were some of my most challenging days. Later this week, Dr. Stephany (a Doctor of Philosophy, not the the medical kind), will share information about DPD Deficiency.
In the initial weeks of treatment, I thought I was crushing cancer and my career at the same time. I’d wake up, choke down some oatmeal and a banana, then pop five chemo pills like they were Skittles. Off to work I’d go, armed with Zofran, Diet Ginger Ale, and enough bland snacks to fill a vending machine. By 1 PM, I was sprinting to Rex for radiation, then back at my desk by 2 PM. Evenings were all about eating dinner pronto to down my next round of chemo exactly twelve hours after the first dose. And for a while, this crazy dance actually worked.
Around the third week, however, my resilience waned. I vividly recall returning from radiation, settling at my desk with a turkey sandwich. A single bite triggered an overwhelming cascade of saliva, coupled with a disorienting sensation which felt like being on a tilt-a-whirl. I ran, (like Sha’Carri Richardson’s speed) to the restroom to hurl. That was it. I packed up my laptop, told my boss I was WFH for the rest of the day, and little did I know, it would be my last day in the office for months.
The nausea never really let up after that sandwich incident. I tried to soldier on with treatment from home for another week, but soon realized I couldn’t keep it up. That’s when I tapped out of work, submitted PTO, and my mom became my personal chauffeur to radiation every darn day.
Consuming enough food to take those chemo pills twice a day became a whole new challenge. My body was turning into a noodle, and spending hours on the bathroom tiles left my shoulders and hips feeling like I’d been hit by a bus. Then came my stroke of genius: I turned our walk-in closet into a plush oasis with outdoor furniture cushions, just steps (or more like crawls) away from the bathroom. Classy, I know.
It was a dark time, both literally and figuratively. I didn’t have energy to do squat except lie there, saltines and a stockpile of drinks (water, flavored water, Pedialyte, you name it) by my side. No energy for TikToks or scrolling through Insta feeds. Just me, lying there, trying to convince myself things would turn around.
Looking back, I kick myself for not listening to my body sooner. But at the time, my only frame of reference for cancer and chemo was what I’d seen on Netflix, which normalized my experiences. So by those standards, I figured this was just par for the course. I was seeing my doctors weekly, and getting blood work done, and as long as my numbers were in the safe zone, I figured I had to push through.
During these consultations, my medical team expressed growing concern over my symptoms. Their recommended course of action involved regular visits to the infusion center for IV fluids, supplemented by additional doses of Zofran. Supposed to be a temporary fix to get me out of my funk. I mean, I only had a week and a half left of treatment, right?
Surgery to have my port implanted was scheduled for Friday, June 24. Knowing I’d be under anesthesia, I followed the directive to abstain from food the evening prior and the morning of the procedure. Sadly, this was a rule I could easily comply with! The nurse requested a urine sample for a pregnancy test. I couldn’t help but laugh, explaining that waiting for a sample would keep us there all day given my severe dehydration, despite the regular IV fluids I received. A few minutes later, my surgeon drew back the curtain and said, “I hear you’re declining a pregnancy test?” I reiterated my predicament to her. After a brief pause, she glanced over me thoughtfully and turned to the nurse with a practical suggestion, “Let’s just have her sign a waiver.”
Post-surgery, I somehow persevered through one more week of treatment. Weekends offered a tiny break from the rigors of radiation and chemotherapy, though my physical discomfort persisted. At least I didn’t have to leave the house or feel the pressure of eating enough food to keep the chemo pills down.
Chemo brought a whole new level of puking and nausea I’d never experienced. My whole body felt like it had been trampled by a herd of elephants, and the nausea? Constant. But it didn’t mean I was going toss my cookies every time—sometimes it was just a surprise attack triggered by who-knows-what, like a baby spitting up mid-playtime. Never knew when it was going hit, and eventually, I got so used to it, it almost stopped phasing me.
I was thrilled for the 4th of July because it fell on Monday, which meant I had a three-day break from treatment. But who was I kidding? It had been days since I ate anything substantial, and even sipping water was a gamble. I recall taking a bath and leaning over the tub’s edge to vomit. Puking up what felt like everything but my soul. Turns out, it was stomach bile. Go figure.
On July 5th, I woke up and did the unthinkable: canceled my radiation appointment via MyChart. I knew my body could not handle another day of chemo pills and radiation. Expecting some pushback from my family, I prepared for their well-intentioned efforts to persuade me otherwise. With my mom’s steadfast backing and additional encouragement from my sisters and husband, I reluctantly agreed to see my oncologist instead of undergoing treatment. They literally all showed up to my house at 11 am on a Tuesday like they were about to stage a full-blown intervention or audition for a reality TV show.
I arrived at Rex to meet with my oncologist’s PA. Let’s just say, she wasn’t exactly my cup of tea—and definitely not my husband’s or family’s either. Her bedside manner left much to be desired, often brushing off my concerns. Today, she urged me to stick to my treatment plan, listing off all the dire consequences of any pause. Mid-conversation, I couldn’t hold it in and threw up right in front of her. Without skipping a beat, she simply handed me a tissue. I told her I felt like I was dying. Undeterred, she proceeded with a physical exam, noting my distended belly. Insisting I consult my radiologist if I chose to skip radiation, she finally relented after some back and forth. Dr. F, on the other hand, showed genuine concern, advised skipping treatment that day, and promptly sent me upstairs for a hefty dose of fluids at the infusion center.
The next morning, I was still projectile puking, despite barely having a sip of water. Seated on the couch, my mother offered a bite of some kind of chicken and rice concoction– an act of kindness that, regrettably, concluded in yet another episode of violent puking. I started crying and my mom looked horrified.
As I soaked in the bath, I could hear my sister and mom talking in the living room. Soon enough, my sister came in and told me they’d spoken to Dr. B, who advised them to take me to the Emergency Department.
I realized I had no other option. I reluctantly got dressed, packed a bag, and headed to Rex with my sister. Several days later, we found out that I had DPD deficiency.