From Birth to Beyond: Mary’s Story

Scarred but Stronger: Surviving the Side Effects of Cancer Treatment

When the surgeon told me they’d found and removed a lymph node with metastatic cancer, it was a turning point—a new reality. I needed answers about my future. Meeting with my oncology team, the gravity of my diagnosis set in: once cancer reaches the lymph nodes, it has a pathway to travel anywhere in the body, possibly through the bloodstream. My team explained that for my cancer type and stage, treatment would likely involve chemotherapy, immunotherapy, or both. Every case is unique—just as you wouldn’t treat your bladder with the same antibiotics as your liver, cancer treatment must be precisely tailored.

I braced myself for treatment, but I was blindsided by the risks. The chemotherapy they proposed threatened my already fragile kidneys, and immunotherapy posed serious dangers given my borderline Lupus diagnosis—potentially triggering more inflammation and harm. Kidney disease, Lupus, and so many of my other conditions and medical history made everything more complicated. Nothing about this would be simple.

They couldn’t start treatment right away because I had to recover from surgery first. So, in the meantime:

• My Oncologist would speak with my Rheumatologist to discuss Lupus precautions with Immunotherapy.
• I’d be tested for Genetic DNA Tumor Markers.
• I’d receive the new Signatera blood test every eight weeks – a personalized, tumor-informed blood test that detects minuscule fragments of cancer DNA circulating in the bloodstream, often earlier than traditional imaging methods.
• I’d receive another MRI & PET scan.
• And I’d have more general bloodwork.

With those results, my cancer team and I would come back together to make an informed decision on my treatment plan. It was a lot to take in.

When the biopsy results came in, the news landed like a trapdoor opening beneath my feet—sudden, disorienting, and leaving me grasping for solid ground: the bladder cancer had invaded my abdominal muscle—not my stomach, but the muscle itself, deep in my lower pelvis. My Oncologist expressed genuine surprise that cancer had appeared there, explaining that it was an exceptionally uncommon site for this type of spread. Hope had been replaced by shock. This put me at Stage 4 cancer. Suddenly, the battle had reached a whole new level.

My team decided to fight back with everything— scheduling me for targeted therapy (Padcev) and immunotherapy (Keytruda), side by side. Targeted therapies are often referred to as chemotherapy for ease and understanding, but they are different, yet sometimes have similar side effects. Targeted therapy is a type of cancer treatment that uses drugs to block the growth and spread of cancer by interfering with specific molecules or genes that cancer cells rely on. Unlike traditional chemotherapy, which can harm healthy cells, targeted therapy is designed to be more precise by attacking cancer cells while leaving healthy cells alone.

Infusions would be every Friday for two weeks, followed by a week’s reprieve, then right back into the fray. This cycle would start May 23rd, but there was no finish line in sight—treatment could stretch on for a year, or more, depending on how the cancer responded. The enormity of it all pressed down, but I braced for the long haul. This new truth brought us to one of our lowest points on this whirlwind journey. I couldn’t help but ask myself if the rest of my life would be defined by cancer.

Facing advanced, aggressive, metastatic, muscle-invasive, high-grade cancer, I stood at the edge of the unknown. The treatment ahead would be relentless and all-consuming. I prayed my body could withstand the coming storm, clinging to hope that endurance might mean survival. Targeted therapy and immunotherapy together now offer the best fighting chance—far better than the options available just a few years ago. This progress sparks a beacon of possibility, even when the typical 5-year survival rate for my cancer type hovers between 8%-9%. I stopped to ask myself many times—will I be among the 8%? Against those odds, hope becomes an act of defiance.

To prepare for targeted therapy, I would need surgery to have a port placed inside my chest. I have always been a hard, painful stick. And my veins simply wouldn’t survive the harsh drugs ahead; the thought terrified me. Ports had always been my phobia, yet every survivor in my bladder cancer group insisted they were the only way through. Some chemotherapy and targeted therapy drugs burn the veins so badly that they leave scars inside and out.

My husband and I made our way to the David H. Koch Center for Cancer Care at Memorial Sloan Kettering Cancer Center before sunrise, hearts pounding. The nurse numbed my chest with lidocaine so I wouldn’t feel the needle accessing my port for the first time. Miraculously, I felt nothing—no pain, only a wave of relief. Bloodwork came next, and my numbers were strong enough to proceed. The moment felt surreal.

Despite the fear, we pressed on. I opted to wear a Cold Cap during treatments, hoping to save my hair from chemo’s wrath. My Oncologist warned that it typically didn’t work for the type of treatment I’d be receiving, but at least I could say I fought for every strand. I was also warned that I could feel intense, freezing pain on my scalp — ice crystals even clung to my hair — but I was determined to try, and I didn’t really experience much discomfort. After a few sessions in, I eventually discontinued the Cold Cap because my hair did indeed fall out.  

A typical treatment day was a marathon of endurance and hope.

• We’d arrive early, nerves taut, and check in on the Infusion Floor. There, a nurse would access my port—my lifeline for IVs and bloodwork.
• Next came the wait on the Oncology Floor, where my Oncologist reviewed my bloodwork to confirm I was strong enough for what lay ahead. Only then was I cleared to proceed, relief and anxiety mingling in the air.
• Back on the Infusion Floor, we waited for a treatment room. Once inside, the real battle began.
• Preparation was meticulous, especially with the Cold Cap. I had to wear it 30 minutes before treatment started, while nausea medication dripped through my IV.
• Hydration IV therapy also sometimes made its debut to help with fatigue and electrolyte loss.
• Targeted therapy came first, followed by immunotherapy. During the process, the Cold Cap was cranked to full power.
• Afterwards, I waited another 90 minutes—ice on my scalp—to give myself every possible chance of holding onto my hair, even knowing the odds were slim.
• Only then did the team remove the IV and Cold Cap. Finally, I could go home, exhausted but grateful.

Most days stretched six to ten hours—a test of stamina, spirit, and the relentless will to keep fighting.

I learned this was a common, frustrating side effect, with no sure way to prevent it. When all else failed, the solution was medication to break up the blockage—sometimes requiring an early trip to the outpatient room so they could flush the port. Only then, after another half hour tacked onto my marathon day, could treatment finally begin. The sheer absurdity of it all—coughing, twisting, and hoping—became a darkly comic highlight in the grind of cancer care.

I woke up to a mild itch, but after a cool shower—even using only the gentlest soap—the irritation exploded into a full-body assault. My husband tried to help, wrapping me in cool, wet towels, but relief was fleeting. The pain became unbearable, surging beyond anything I’d ever felt. Stabbing, crawling pain radiated from the inside out, leaving me shaking, sobbing, desperate for escape. Nothing touched the agony—not even my prescribed ointment. In desperation, I took Prednisone just to survive the morning. Eventually, my doctors put me on a daily dose of Allegra, and mercifully, I never had to endure that level of excruciating torment again.

Other side effects soon followed, each one layering new challenges onto an already difficult journey:

Fatigue: On two occasions, I was so bone-tired that I forgot to close the nozzle on my urostomy bag, resulting in a flood down my leg in the hospital lobby. Now, I always carry a change of clothes—just in case.

Swallowing: Even something as automatic as swallowing became foreign. Sometimes I’d forget how, or choke on even the softest food. Every bite had to be drenched in liquid or sauce to make it past my throat. My medical team prescribed medication to help my saliva return and make eating manageable again.

Nausea: I relied on daily preventive anti-nausea medication.

Neuropathy: I experienced tingling, pins and needles, burning, swelling, and grip loss in my hands and toes.

Taste and Eating: I lost nearly all sense of taste—except for olives and hot sauce. I’d crave certain foods, but my appetite was limited, and small portions made me feel full. More than once, I broke down after not being able to taste my dinner.

Hair Loss: Hair everywhere—arms, nose, underarms, legs, every part of my body—fell out, and finally, so did the hair on my head.

Rashes: I developed rashes that felt like I was being sunburned from the inside out—arms, armpits, thighs, and buttocks. My skin on my hips, armpits, arms, and thighs turned black and peeled. Sometimes, it looked like the dye from cheap jeans had rubbed off on my skin.

Mobility: My Dysautonomia flared, and I found myself swaying backwards throughout the day.

Vision: Blurred vision would strike at times.

Emotions: The emotional swings were intense; I’d sob watching a comedy, something I’d never done before.

Wakefulness: Some days, I simply could not keep my eyes open—fatigue that went beyond tiredness.

Dexterity: A severe tendonitis flare in my right wrist left me unable to use my hand for three days—the pain was excruciating, as if my wrist would break.

Thyroid: My thyroid-stimulating hormone (TSH) shot up to 137.52, causing crushing fatigue, brain fog, swelling, cold sensitivity, hair loss, brittle nails, weight gain, and more. Having managed Hypothyroidism/Hashimoto’s Disease since age 33, I was familiar with this terrain. Apparently, this side effect is common with immunotherapy, and some even say it’s a sign the treatment is working. Adjusting my Synthroid medication would slowly bring things back to normal.

Digestive: The Fourth of July summarized my summer: I was sidelined by relentless, explosive diarrhea—no beach, no fireworks, just constant trips to the bathroom. Standard meds failed, but in August, my oncologist prescribed Opium Tincture, a last-resort treatment. It finally worked, and, thankfully, without the side effects you might expect from opiates.

In moments like these, managing all of these side effects, my husband and I clung to our new motto:

“Go through hell on Earth now, to avoid the real Hell or Heaven later.”

Dark humor, maybe, but it gave us a bit of a bite to continue on when we needed the reminder the most.

Until we received the results, we’d celebrate how resilient my body has been through all the treatments and side effects. My doctors and I feared the toll it might take. But against the odds, I was still standing and still fighting.

While at a college tour for my step-son, my Oncologist called with the shocking news, my recent PET Scan & MRI revealed no evidence of cancer! I couldn’t believe it. Dumbfounded, my husband and I were elated and grateful to have successfully reached mile one of the marathon. But that didn’t erase the pain that got us there, or the fact that we’re in this for the long haul. We recognized this as a monumental milestone, but true celebration comes at the five-year mark—when survival is a lasting victory.

Although in remission, I’d have six more sessions of targeted therapy and immunotherapy out of precaution. This is because with stage 4 bladder cancer, recurrence is high. Cancer doesn’t take a day off, nor did I.

After a three-week hiatus—forced by being hospitalized from a life-threatening multi-drug resistant bacteria, a pseudimonas arignosa infection – I began treatment again. The David Koch Center  at Memorial Sloan Kettering Cancer Center, where I had received treatment — beautiful and tranquil—had become a second home for my husband and me. I counted myself lucky to receive care in such a peaceful place. The outpouring of love and support from friends and family was also a lifeline. Even after the hardest weeks, I reminded myself: every new day is another chance to fight, and I never took that for granted.​

I finally arrived at my second-to-last treatment. There was a lightness in the air. My husband and I made balloon gloves to pass the time while waiting to see my Oncologist. I got some naps in during treatment. We picked up my prescription for my stomach. My bloodwork looked great, and we had no issues with my port. We were absolutely elated for me to ring the bell soon, marking the end of treatment and the completion of 12 sessions.

On Friday, September 26, 2025 — I • RANG • THE • BELL!

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