From Birth to Beyond: Mary’s Story

Beyond the Diagnosis: Understanding Cancer’s Hidden Challenges

My cancer treatment journey was filled with relentless detours, transforming my life into something unrecognizable—even compared to my years of managing other serious medical conditions. Nothing truly prepares you for the devastation cancer unleashes. The complications began immediately after surgery: two months of relentless, explosive diarrhea, sometimes up to 16 times a day, around the clock. Even the highest daily doses of Imodium and other traditional treatments offered no relief. My surgical oncologist suspected that, since my intestines were cut during surgery to create my stoma, they had stopped producing the bile needed for formed bowel movements. He prescribed a powder meant to counteract the diarrhea—sometimes used for just a short stint, but for others, it becomes a lifelong companion. I had to take it three times a day, carefully spacing out all my other medications. I was also referred to a gastroenterologist, who confirmed our fears: my surgery had permanently disrupted my intestine’s bile production, triggering the unrelenting diarrhea and potentially altering my ability to ever have normal bowel movements again. I learned that this side effect is all too common after surgeries like mine. By the end of March, we finally started to gain control—only for the diarrhea to return with a vengeance over the summer, triggered by immunotherapy. Eventually, I was prescribed Opium Tincture—the last resort when nothing else worked. It finally brought relief, but at a steep cost to my body. Even now, we are still fighting to fully manage these symptoms.

Sepsis

By late March, just as we began to manage the relentless diarrhea, a new complication struck. On April 3rd, I rushed to Memorial Sloan Kettering Cancer Center’s emergency room with a fever of 103.3 and a pulse racing at 147. I recognized the signs immediately: I was heading into sepsis—for the third time in my life.  Being born with Spina Bifida, I was born with a neurogenic bladder, which means I lived with recurrent bladder infections, kidney disease, and both kidneys fused together on the right side. So, for those of us with Spina Bifida, sepsis can be a constant, lurking threat, often triggered by chronic urinary tract infections – like mine. But infections of any kind—pneumonia or even a simple skin infection—can ignite sepsis. The real danger isn’t the germ itself, but the body’s own chemical response, which can trigger unchecked, destructive inflammation. Sepsis occurs when the body’s immune system overreacts to the infection; it unleashes a storm of inflammation that can ravage organs and tissues within hours. With fever, chills, a racing heart, confusion, or rapid breathing, sepsis can spiral out of control, robbing you of precious time. Immediate medical intervention is the only way to prevent organ failure or death. It can strike without warning, demanding relentless vigilance.

My first sepsis episode happened in Arizona right before St. Patrick’s Day in 2014. I encountered Septic Shock. A urinary tract infection went from my bladder to my blood, threatening to shut down my organs. I had no idea what Sepsis was at the time. I remember having to Google my diagnosis once I was in bed in my hospital room. The ER admitting crew didn’t seem to know what was wrong either when I initially arrived. I remember going into the Emergency Room and sharing with the doctor all my conditions. He saw my blood pressure plummeting and pulse rising and had no idea what was going on with me. My pulse was 170 when it’s supposed to be 70, and my blood pressure was 108 over 48 when it’s supposed to be 120 over 80. I remember his panicked face vividly, and it was right then and there that I asked for a different doctor. Thankfully, although Spina Bifida was not a common term for the next doctor, he was able to access what was going on.

Four years later, living in NYC, I was hospitalized for sepsis a second time. This time, prior to becoming septic, I asked my new Nephrologist to treat me after a culture came back with minimal bacteria, but I still had smelly urine. He said no. Being that my urine is always colonized with bacteria, the doctors knew very little about when to treat me and when not to treat me. Unfortunately, most doctors hesitate to prescribe antibiotics because they worry you’ll become too resistant and may have fewer treatment options available when you’re seriously ill in the future. That may be true for many, but not for this Spina Bifida patient. Antibiotics are the ONLY WAY I’ve survived until now. At the time, I was busy and distracted, closing down a  school I oversaw. The company I worked for was closing its U.S. campuses. I was so busy that I didn’t follow up with a fight in time with the doctor to demand antibiotics. So, I went septic – again.

My third sepsis episode struck in late March 2025, just as my body was already exhausted from months of cancer complications. I had a change in mental status, my body began shaking and shivering, and my lowest blood pressure was 88/64. While this wasn’t my most severe sepsis episode, it was a devastating setback—yet another hurdle on my already gruelling road to recovery.

These stories are not uncommon when it comes to those of us with Spina Bifida. So, recognizing the warning signs can save your life.

Symptoms can include:

– Sudden fever or chills

– Confusion or disorientation

– Rapid heart rate or breathing

– Extreme pain or discomfort

– Clammy, sweaty skin

– Dangerously low blood pressure

– Reduced urine output

– Labored or difficult breathing

Port Problems

Not long after surviving sepsis for the third time, I was scheduled to have a port placed in my chest to receive targeted therapy and immunotherapy. Typically, only moderate sedation is provided for this procedure, meaning some patients are awake but groggy. That might be fine for others, but I insisted there was no way I wanted to hear, see, or feel anything during the procedure. Thankfully, they agreed to maximum sedation.

Although it was only an outpatient procedure, the recovery was extremely difficult for me. The immediate feeling after the surgery was pulling and pain, and I was unable to use the right side of my body for a bit while I recovered. I was not a fan of having more “equipment” in my body. First, the Urostomy Bag was attached to me at all times, so my urine had a place to drain. Now this. I felt like a robot.

I was worried about the procedure itself, but didn’t think too much about it afterwards because everyone just told me I’d be “sore” but feel better in a week. Sore?! Sooooore?! Does feeling like you have a METAL PLATE in your chest “just sore”?!!! Is feeling like you were beaten by a metal baseball bat to the side of your chest “sore” ??? It was quite unnatural and hard for me. I waited two days after the procedure to start walking again, but I still couldn’t stand upright. And I wasn’t able to lie flat – I’d been sleeping sitting up. And despite this, I still had to have a biopsy procedure closely after this. This “tiny” procedure on Wednesday was so much on me physically that I moved my Transvaginal Ultrasound to a different week.

Port problems plagued me throughout the summer when receiving treatment. The port could be flushed, but blood flow or drawing blood became far and few between. Because it became a regular occurrence, the doctors decided there was no other option but to have me undergo a second port placement procedure.

Life-Threatening Bacteria

At the beginning of the new year, we knew I had cancer, but my husband and I had prayed that I’d be turning a corner by August. But, in August, a multi-drug resistant bacterium, called Pseudomonas arigonsa, was found in my urine. Apparently, this bacterium is most commonly found in infants or immunocompromised patients. My infectious disease doctor ordered home healthcare to come and administer the ONLY one of two available IV antibiotics offered to treat the colonization of this particular bacterium. It had to be taken very seriously, especially for cancer patients, as it could quickly lead to sepsis. My port needed to be accessed, and an IV would be in it for 10 days as the medicine was administered to me at home. According to my doctor, it could typically take more than 48 hours for insurance approval and to set up an appointment. I had already begun a low-grade temperature the night before. This was all very serious given my condition and past history.

For the next 24 hours, my temperature remained stable at or under 100.5. But I still woke up at 3am with stomach pain and dry heaving. I was finally scheduled to begin at-home IV antibiotics the next day. Most adhesives and bandages gave me blisters all over my body now. So there was a concern with my port being accessed and bandaged for 10 days as well.

The at-home health nurse arrived to go through a large box of supplies mailed to us for treatment and to review the protocol for the IV infusions. She was supposed to set me up and then show us how to administer the IV antibiotics ourselves because no one would be returning daily to assist us. The antibiotic was to be administered three times a day for 3 hours each time, meaning I would be hooked up for a total of 9 hours a day—along with setup, which could take a half hour each time. The three-hour time period called for two different bags each time as well. An example schedule was: 6am–9am, 2pm–5pm, 10pm–1am. This would have left us with maybe four hours of sleep a night for ten days—while hoping and praying we didn’t get air in the IV line, didn’t administer the incorrect dosage, or didn’t have any issues with my port, etc.

My family and I discussed my options for a little over an hour, and we came to the conclusion that this was too intricate to rely on us to do correctly three times a day for ten days, and it left too much room for human error.

After 24 hours in the hospital treating this scary bacteria I had with IV antibiotics, we discovered that the most sensitive skin medical grade port bandages available burned and ate away at my skin. A charge nurse who had worked in pediatrics and spent 15 years at Sloan’s, an IV expert, and a Nurse Practitioner all said they had never seen a burn that bad occur in 24 hours from a sensitive-skin port bandage. There were open blisters and exposed skin. I was required to endure antiseptic on some of them to avoid a port infection since it was so close to the port, and lidocaine was added (which burned). I screamed and cried in agony as my husband watched them sanitize the area, holding my hand the entire time. It felt like a burn upon burn upon burn. Then silver was applied to the burns to try to heal them, and makeshift solutions were compiled among the doctors, my husband and myself to come up with a permanent bandage solution. We also had a hard time getting my extreme lightheadedness and diarrhea under control that day. I had been hoping for an “easier” 10 days there. Apparently, that was not in the cards.

Immun-related adverse events

In late September, I was barely able to keep food or drink down. I could barely swallow with what little saliva I had left without it burning and making me choke. The stomach pain, nausea, violent shaking from the fever, constipation, diarrhea, lightheadedness, and weakness were simultaneous and relentless. On October 5th, I was back at the hospital with SEVERE throat burning. For three days, I couldn’t tolerate any food or even water because swallowing was excruciatingly painful. My urine was almost grey from lack of hydration. Speaking hurt, I couldn’t open my mouth fully, and I was plagued by nausea, vomiting, overwhelming weakness, and red spots that appeared across nearly my entire body. My blood sugar was still stable despite the fact that I hadn’t eaten or drunk for a couple of days.

Phlegm built up around the back of my throat & which led to violent dry heaving and gagging. It felt like the Chucky Doll was trying to push its way out of the front of my neck. heaving. Nurses in the hallway came running because you could hear me behind closed doors convulsing down the hospital hallway. Phlegm choked me at night while I slept.

They tried everything… pain killers temporarily killed the pain, but it was back to square one when they faded.

We were so grateful the doctors at Memorial Sloan Kettering took quick action to give me several biopsies and an emergency endoscopy.

Once hospitalized, they found the following –

TEST RESULT #1 revealed I had two serious bacteria (Klebsiella & Enterobacter) in the back of my throat. Most people don’t get sick from these in their mouth, but given my immune system, it was susceptible. The solution was IV medication.

TEST RESULT #2 was from an emergency Endoscopy that I had. It revealed that the immunotherapy not only ate away at my cancer, but also ate away at the tissue in my esophagus and lining of my stomach. And, incidentally, my hiatal hernia grew from small to large. The solution was 60 mg IV Prednisone, for as long as I was in the hospital and then several weeks of prednisone afterwards.

TEST RESULT #3 biopsy results of the red dots all over my body only revealed “non-specific” inflammation (a.k.a. “We don’t know what it is rash”) and didn’t provide a specific diagnosis. But the consensus was that the prednisone would clear it up.

When I came to the hospital, we thought I’d be discharged the next day. We had NO IDEA the immunotherapy to treat my cancer had eaten away the epithelial layer of my esophagus & stomach, which made me susceptible to two bacteria infecting my throat. No idea. After about five days of IV treatment, they determined I could go home with oral antibiotics (a lot of them)—so I was discharged from the hospital. I was well enough to leave the hospital, but not well. I would have weeks of steroids and antibiotics to rotate through and lots of precautions to take. This had been one of the top excruciatingly painful experiences of my lifetime. You never know how much torture you can endure until your body does. Our bodies are miracles. A cancer patient’s life can have a lot of VERY LOW “lows” – I had almost a year of constant cancer-related complications, I learned to accept this. But what this means is the “highs” are just that much sweeter… and we celebrate and cherish each one.

Vote for Spina Bifida

One of our biggest celebrations is my advancement in the Fab Over 40 competition, which celebrates accomplishments in women over 40! I’m competing to raise awareness about Spina Bifida + Bladder Cancer. I’ve advanced to the Semi-Finals and need YOUR vote to win. Here’s how you can help:

1. Vote every 24 hours – it’s Free.
2. Buy votes – all donations are tax-deductible and go to the National Breast Cancer Foundation.
3. Tell your friends, family, neighbors, co-workers, doctors, hairstylists, and everyone you know to vote!

Link to vote: https://fabover40.org/2025/mary-67c6

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