As a New Mom and Med School Grad, I Developed an Ultra-Rare Cancer. This Was the First Sign

A year ago, I was already just grateful to be here.

I'd just graduated from medical school and gotten a master's degree in public health. And, after a difficult birth involving a postpartum hemorrhage and hysterectomy to save my life, my son, Taino, was then 17 months old.

I felt like I'd been given a second chance at life. And I was excited to pursue a specialty in OB-GYN, helping other people survive and go home with their families like I did.

But my life was about to take another swerve.

For about five or six months, I'd felt a gnawing abdominal pain, almost like I had pulled muscle. I have Crohn's disease , a type of chronic inflammatory bowel disease, and assumed the discomfort was a flare-up, or maybe a hernia from when I'd had surgery.

It got worse and worse until, finally, I hit a wall.

A week after I graduated, I was visiting my parents in New Mexico. While walking around the plaza in Santa Fe with my son in a carrier, I suddenly couldn't carry him anymore. It was extremely painful, and I knew instantly that I needed to go to the emergency room.

I told them the pain felt like when I had appendicitis but on the other side of my stomach, and was whisked back quickly.

At first, my test results all seemed normal. But a CT scan revealed large masses on the left side of my abdomen. The largest one was about 12.7 centimeters, and it was wrapped around my colon.

I took a video of the scan and sent it to a radiologist friend of mine. Meanwhile, I was suddenly given a private room at the hospital and started to realize that this wasn't going to be something simple.

My friend replied, "Holy s--t, this looks bad. How old is this patient?" I had to tell him it was me. So I knew I had metastatic cancer even before the doctor broke the news to me.

Mistaking Cancer Symptoms for Anxiety

It would be a while before we learned exactly what type of cancer I had. But looking back at how I'd been feeling the past few months, it started to make sense.

In addition to the stomach pain, I'd lost 20 pounds without really trying. I felt nauseous all the time. I was getting full quickly and didn't have much of an appetite.

I attributed all of that to feeling stressed and anxious about starting my residency and this big new chapter of my life. I thought I was being anxious, but it was cancer causing all of these symptoms.

At the hospital in New Mexico, I needed a biopsy early the next morning and wouldn't be able to eat after midnight. So, at 10:45 p.m., I received the kindest gesture possible from the doctor: a smorgasbord of ER snacks. I also got the chance to call my husband back in Texas and tell him what was going on.

I got the biopsy on a Thursday morning before Memorial Day, so I wouldn't get the results for several days. I took the opportunity to fly home to Houston.

Finally, I got the call from the oncologist, who told me that they still didn't know what kind of cancer I had, but that it was aggressive — and I needed to get to The University of Texas MD Anderson Cancer Center as quickly as possible.

Starting Treatment Without Knowing the Exact Cancer Type

Once I got to UT MD Anderson, I had more tests and another biopsy. But they needed to identify the cancer before they could send me to the right type of oncologist.

The initial results showed that my cancer was in an aggressive family of cancers called small round blue cell tumors. That was enough to get started. And my oncologist, Dr. Elise Nassif Haddad at UT MD Anderson, said there was no time to waste.

I started chemotherapy just a few days later. And the day I started chemotherapy was the last day I was able to breastfeed my son.

It was also at this point that I started having really hard conversations with my oncologist. It was very unlikely that I would ever be able to get surgery, so my options were limited.

My diagnosis ultimately turned out to be desmoplastic small round cell tumors (DSRCT), a very rare type of sarcoma that forms in connective tissues like fat, lymph nodes, blood vessels and muscle, the National Cancer Institute explains.

"Sarcoma accounts for only 1% of all human cancer, so it's already pretty rare," Haddad tells TODAY.com. "The DSRCT is ultra rare ... and it's unfortunately one that we don't cure well."

Only about 200 cases of DSRCT have been recorded since 1989, when the cancer was first described, the NCI says. When it does appear, it tends to occur more often in white males. For me, the diagnosis is about 1 in a billion.

If you've had a stomach ache for a few weeks, you definitely should not assume you have this very rare cancer, Haddad says. And with so few cases out there, she adds, doctors have very little data to go on when advising patients like me.

In June, she told me I would be lucky to make it to Thanksgiving.

We talked about my wishes for palliative care, and I got my bank account, passwords and bills in order. Dr. Haddad encouraged me to spend time making memories with my son.

I thought about planning my funeral. Where would I like to be buried? Where did I want my son to come visit me? Would my grave be the only way he would get to know me?

My son wasn't walking yet, and I wanted to be there for his first steps. I took him to his 18-month check-up, and I really wanted to be there for his 2-year-old check-up, too.

The first round of chemotherapy did not go the way I expected. I thought it was going to be fine. On the first day, I was doing squats in the infusion room. And on the next day, I was going back to the hospital in an ambulance with uncontrollable nausea and vomiting and severe abdominal pain.

That round of chemo got cut short. But I was ultimately able to complete six rounds, which was kind of surreal.

These were intense chemotherapy drugs that I'd learned about in medical school. I'd studied flashcards about these medications that were now being poured into my body.

After six rounds of chemotherapy throughout the summer, my condition started to take a positive turn. Instead of this being a death sentence, I saw glimmers of hope.

My oncologist wasn't sure I'd be able to get surgery, but she referred me anyway just to see. I met with a surgical oncologist who immediately agreed to do the procedure. My surgeon was able to get all the visible cancer out in a procedure that took just four hours.

In my research, I found a 2019 study that followed 100 patients with DSRCT. Of those 100 patients, only five lived for at least five years. While it's not exactly clear what made the difference for them, those patients did share some common factors, like a good response to chemo and the ability to undergo surgery. Gradually, I started to check off each of those boxes, too.

I knew my life would never go back to my old normal, and DSRCT has a high likelihood of coming back. But the possibility of getting some disease-free time began to feel more within my grasp.

I'd resigned myself to never going back to medicine. I thought I would just be a patient for the rest of my life and that caring for other people just wouldn't be something I got to do. But my mentor, who is a palliative care physician, took me aside and encouraged me to reapply to medicine.

After a last minute application, I was accepted into an emergency medicine residency, which starts this July.

Choosing Hope Over Pessimism

Today at 33, I'm working my way through 12 cycles of maintenance chemotherapy. I have no signs of disease, and I'm grateful to still be here.

But dealing with the uncertainty of a potential future has been challenging. It had been easier for me to be pessimistic and expect the worst news over and over again. I find it much harder to be comfortable with having hope.

"We're having a very real conversation about, well, if you survive, you also don't want to be doing nothing for five years, right?" Haddad says. "We're trying to balance having hope that (I) might be that very rare survivor, but also realistic expectations that in the majority of cases that's not going to be the case."

And, knowing that DSRCT has an 80% chance of recurring, I worry that my hopes might just be dashed again. We don't know when it's going to come back — if it will be in three months after I stop maintenance chemotherapy or two years or four.

But I know this experience has changed my perspective, and it's pushed me to think about how I want to spend my time. And while I'm passionate about medicine, I also know how taxing it is. Now, I have more reasons to say yes to my family than I did before.

Getting to see my son every day when he wakes up, going on walks with him in the neighborhood and seeing him learn about the world — that's the kind of bucket list I want to be around for.

This article was originally published on TODAY.com