TLDR- Ask your doctor to test for DPD deficiency prior to beginning chemotherapy.

As Rebekah entered her third week of chemo pills and radiation, things took a hard left turn. She had moved into her closet to be close to the bathroom and became nearly vegetative. I would come over daily after work with food, trying all kinds of recipes from the Cancer-Fighting Kitchen cookbook that she might be able to tolerate, but not only could she not eat anything, she was hardly awake. When I visited her in the closet, she would barely register my presence, stuck in a halfway state between consciousness and unconsciousness. We were all naturally very worried, but since we had no frame of reference and things seemed okay at doctors’ visits, we thought, well, this is the reality of cancer.

However, when she reached the point where she said she wanted to stop treatment and asked us to call hospice when she was ready, something was clearly very, very wrong. I had gone with her to her doctor appointment earlier that week and voiced my concern that something wasn’t right. But the numbers all looked fine and cancer is brutal, so they agreed to give her a few more days’ rest but insisted she needed to push through and finish treatment. Less than 48 hours later, I was taking her to the ER. She was admitted to the hospital and ended up staying there for the remainder of the month, our version of summer vacation at the Rex-Carlton, as we jokingly call it.

In the meantime, despite the break from chemo, she was not getting better. While hospitalized, they ran every test imaginable and finally got an answer—she had DPD deficiency.

What is DPD Deficiency?

After spending a few days in the hospital, Rebekah’s oncologist, Dr. B., made a special visit after hours to inform her that they had identified she had DPD deficiency. The nurses on the floor gathered around Rebekah’s room to witness the unusual occurrence of an oncologist visiting a patient after hours. None of them were familiar with DPD deficiency. Dr. B. mentioned that Rebekah was only the second patient he had encountered with this condition.

In response, my family delved into researching DPD deficiency to gain a deeper understanding. We discovered its rarity, affecting less than 5% of the population (which reinforced our belief in Rebekah’s uniqueness). Despite its low prevalence, DPD deficiency is profoundly serious. Due to its rarity, it is not standard procedure in the US to test for this deficiency before beginning chemotherapy.

DPD (dihydropyrimidine dehydrogenase) deficiency is a condition where the body lacks enough of the enzyme needed to break down certain chemotherapy drugs, such as 5-FU (fluorouracil) and capecitabine. This deficiency can lead to severe toxicity because the drugs are not metabolized properly, causing them to build up in the body to dangerous levels. This is what was happening to Rebekah- she was experiencing severe toxicity.

This meant changing her dosage of pills, adjusting her treatment timeline, and changing the dosage for infusion chemo. Finally, with an answer, we could move forward. But it left us feeling uncertain. How do you know when you don’t feel well because of treatment, and how do you know when it is dangerous? She had the most amazing team of doctors, PAs, and nurses, but even still, it’s really important to ask questions, speak up, and advocate for yourself when you think something isn’t right. Healthcare professionals will do all they can, but knowing your body is also important. And it’s really important to have people around you who can help advocate when you can’t do it for yourself.

Hindsight is 20/20. If we knew then what we know now, Rebekah could have advocated for herself more, and her caretakers could have advocated for her. 

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.

Every cancer journey is unique, and what one person finds comforting might not resonate with another. As someone who’s been through the wringer, I can tell you that there’s no one-size-fits-all when it comes to support. However, there were a few things that really stood out to me—whether they made me laugh, cry, or just feel a bit more understood. Here are some of the phrases and gestures that I appreciated the most during my battle with cancer. Hopefully, they can offer some insight into how to support your loved ones during their own journey.  

“Do you want me to feel it or fix it?” 

• Sometimes I just wanted to unleash a flood of tears or vent like a drama queen. Other times, I needed someone bossy enough to wrestle with my insurance company for me when I was done dealing with it.

“It’s okay to feel X.” 

• People LOVE telling you how to feel—like, “Be positive!” or “Be grateful!” And sure, those are cute, but what really rocked was having someone let me be a hot mess and feel every emotion from scared to numb without judgment.

“Think of all the great parking spots you’ll get with that handicap tag!” 

• Not gonna lie, one of my biggest regrets is not snagging that VIP parking pass when I needed it most. Seriously, missed opportunity!

“If there’s anything you need or anything I can do, just let me know.” 

• When people asked what I needed early on, I had zero idea. Like, how am I supposed to know what future-me is gonna need? The ones who kept the communication lines open so I could hit them up when I figured it out were real MVPs.

“Can I do X for you?” 

• Asking “What do you need?” is like asking a deer in headlights for directions. Offering specific stuff—like, “Can I drop off dinner/sit with you during chemo/bring cookies?”—was way more helpful. It’s like ordering off a menu instead of just staring at it blankly.

“Do you want a Chantilly cake from Whole Foods?” 

• Umm, duh, that’s a hard yes.  Always.  Shout out to the WF bakery department for helping me hit my daily caloric goals during my darkest days. ILYSM.

“It’s okay to ask for help.” 

• I hated feeling like I was bugging people. But hearing that folks were actually pumped to help made it a bit easier to reach out when I finally got my act together.

“Let’s focus on what we can control right now.” 

• Everything about cancer is like being on a never-ending roller coaster you didn’t sign up for. As a control freak, losing grip on my schedule and energy was brutal. Setting tiny goals, like eating protein, gave me something to cling to and made the whole mess feel a bit less overwhelming.

“This really fucking sucks and is unfair. I’m sorry.” 

• Hell yes, it does. I always appreciated friends and family who skipped the sugar coating and were straight-up honest about how much it all sucked.

Discussing cancer can be stressful, awkward, and uncomfortable. It’s just not a pleasant conversation. Period. If you find yourself talking to someone who’s been diagnosed with cancer and you’re not sure what to say, that’s totally normal. Even if you accidentally put your foot in your mouth, I’m sure the other person understands you’re coming from a place of good intentions. To help you avoid those awkward situations, here are some tips on what you should avoid saying and why. And yes, these are from my personal experience 

“Thank God they caught it early”

• Umm, by “caught it early” do you mean because I am still alive? Unless the patient specifically states that their cancer was caught early, don’t make that assumption. I lost count of how many times people assumed that because I looked healthy on the outside my cancer was diagnosed early when in fact it was Stage 3, which is not “early”. It puts unnecessary pressure on the patient to explain their staging.

“Ohh, my uncle died of that cancer”

• This was my dentist’s response when I shared my diagnosis. Obviously, she didn’t mean to share something so depressing but yeah, let’s avoid this. Don’t worry, she did get back into my good graces by giving me an extra fluoride treatment to keep my teeth strong and cavity-free while I was going through chemo and was unable to have my regular cleanings.

“Have you tried X”

• Unless you are an actual oncologist, please keep your detox tea/weird ass vitamin/voodoo bath salts to yourself. It is already incredibly overwhelming to understand the treatment our medical professionals have laid out for us. We don’t have the brain capacity to explain why we aren’t going to start a vitamin routine you saw on TikTok last week. P.S. I did try Marie Laveau’s Pure Magic Bath Salts and I still had a tumor when I got out of the tub, sooo verdict is still out.

“You look great!”

• I know this is a compliment and you mean well but it minimizes my struggles and the reality of my illness. I promise, I did not feel great on the inside. It also makes the hair loss, surgery scars, and muscle loss a tad bit harder to accept knowing the next time you see that person they aren’t going to greet you with that same compliment.

“How much time do you have left?”

• Enough time to know I don’t want to waste my energy around you. Lol but for real, this is rude. Cancer is a physical AND mental battle. When my doctor told me the survival rate for my cancer, I told myself over and over that I was in the top percent. Some people may be more comfortable sharing the anticipated expiration date but let them share that information. Some of us prefer to not think about it.

“Are you worried about losing your hair?”

• My response, “Yes, but I am more worried about dying right now.” Losing my hair was VERY traumatic. I did not need to be reminded of the struggles that I’d be facing.

“Do you have a family history of cancer?”

• Since when is my genetic makeup any of your business? And if I did, how does that change the situation I am currently in? I actually felt a huge sense of relief after completing an expansive panel of genetic testing to find out I did not have any genetic markers making me more prone to cancer. To me, those results gave me a sense of comfort that I was just a case of bad luck and that my family members were not any more likely to be diagnosed with cancer.

“You’re so brave”

• Yeah, I don’t have a choice. The alternative is dying and that could very well happen. I know this is meant as a compliment but it puts pressure on me to maintain a façade of strength.

Alright, let’s kick this off by acknowledging how ridiculously fortunate I am to call Raleigh home. We’ve got some of the best oncologists and surgeons in the country right here. Plus, my insurance allowed me access to treatments from both UNC Health and Duke. Not everyone gets to choose between these two outstanding teams, but if you do, I hope my experience might help you out.

When I first got the Big C diagnosis, my orthopedic doc sent me straight to Rex Oncology. Everything happened at warp speed, so I didn’t even have a moment to ponder the possibility of getting a second opinion. It wasn’t until my first surgeon at Rex referred me to Dr. S at UNC Chapel Hill that I realized I had options. Here’s what made me stick with the Rex team initially:

Initial Contact: The team at Rex—Care Navigators, Schedulers, Oncology Nurses—were total sweethearts. They explained everything with saint-like patience and gave me all the hugs (shoutout to Jan, Katie & Holly) when the tears inevitably came. They hustled to get my appointments set up and were on call 24/7, basically my emotional support squad.

Care Team Collaboration: When my case turned out to be too tricky for the Rex surgeon, I was referred to Dr. S at UNC Chapel Hill. Even though I hadn’t met Dr. S yet, she and her team had already met with my original surgeon, oncologist, and radiation oncologist. Knowing these brainiacs were collaborating across hospital lines to give me top-notch care was super comforting. Dr. S even gave me the choice of doing my radiation and chemo at Rex or UNC. Rex being a mere 3-minute drive from my house vs. a 45-minute trek to Chapel Hill? No contest.

Gut Instinct: I’m all about vibes, and my oncologist, Dr. B, passed the vibe check with flying colors. He was warm but serious, and a quick internet stalk confirmed he was legit. Same went for Dr. F, my radiation oncologist.

Did I do exhaustive research on my doctors? Nah. But my gut said they were solid, and with the urgency to start treatment, I rolled with it and stuck with Rex for radiation and chemo.

After my month-long stay at the Rex-Carlton, my family and I started to have more questions about the treatment plan. We decided to get a second opinion. Before I was diagnosed with DPD deficiency, the plan was to complete 8 rounds of chemo with 5-fluorouracil (5-FU). But since my body couldn’t metabolize 5-FU properly, we needed a new plan.

DPD deficiency is rare, so there wasn’t a clear-cut treatment protocol. We had to avoid under-treating and leaving cancer cells behind, but we also couldn’t go with the standard dose. The plan was to start with 50% of the infusion dose and play “guess and check.” Not exactly confidence-boosting, but my docs were doing the best they could with the info they had. Knowing I was only the second DPD deficient patient my oncologist had treated, I went for a second opinion.

Even though Dr. B was supportive of getting a second opinion, it still felt awkward. A family friend recommended a world-renowned oncologist at Duke, and I scored an appointment within a week and a half. My sister, Stephany, came with me, armed with a laundry list of questions. The Duke doc had reviewed my records and took the time to ask how I was feeling in every sense of the word. We had a great chat, and he recommended the exact same treatment plan as Dr. B. That gave me a lot of reassurance.

I’m super grateful for the care I received. If I could go back, I’d make the same decision regarding my care team but with a few tweaks:

• Research oncologists in my area/insurance network.
• Understand common treatment plans better.
• Look into treatment plans outside the US. There’s more research on DPD deficiency in the UK.
• Trust my gut—if you don’t vibe with your doctors, find someone else. I was lucky to gel with my whole team, except for one PA.

So, there you have it. Get that second opinion, trust your vibes, and may your journey be as smooth as possible. And remember, if your gut tells you something’s off, listen. You’re putting your life in these doctors’ hands.