As informed to Erica Rimlinger
Six months into my first being pregnant, I felt a lump in my breast and introduced it up at my physician’s appointment. “Oh, that’s regular,” my OB-GYN stated. “That occurs whenever you’re pregnant.”
Three years later, in 2022, I sat in a hospital robe a PET scan of my physique. Every patch of sunshine on the black background confirmed the place cancer had taken residence. The scan was lit up just like the Las Vegas strip at evening.
That lump was not “regular.” It was HER2-positive breast cancer, and by the point it was found three years later, it had unfold all over the place.
As surprising as that picture was, I’d identified one thing wasn’t proper in my physique after my daughter was born, and for 3 years afterward. My hair had turned three shades darker and was falling out and breaking. I slept 12 hours an evening and took two-hour naps to get by way of the day. I noticed specialists who recognized me with hypothyroidism. In the summertime of 2022, I discovered dimpling in my breast, like I had a damaged implant — besides I didn’t have implants. Once more, a dermatologist informed me it was “regular.”
Within the fall of 2022, the muscle mass in my chest felt sore, and after I was showering, I felt a lump. This time, my physician informed me to get a mammogram and ultrasound, which led to a biopsy and analysis. I used to be in my early 30s, mother to a toddler, had at all times labored out, and had no household historical past of most cancers. How might I’ve breast cancer? I didn’t match the factors.
However the PET scan, glowing brightly, confirmed breast most cancers that had unfold to my lymph nodes, thyroid, kidneys, liver, abdomen, skeletal system and extra.
I instantly began chemotherapy and hormone suppressants. My insurance coverage wouldn’t cowl a mind MRI, though I had most cancers all over the place from the neck down and HER2-positive breast most cancers generally heads to the mind when it spreads. My physician fought for the mind MRI and, in February 2023, it got here again clear.
Extra excellent news adopted: In April 2023, I completed chemotherapy and my tumors had shrunk significantly. My liver enzymes have been regular. I stayed on hormone therapy, and my hair grew again. I had common scans to ensure I used to be nonetheless transferring towards my purpose of NED, “no proof of illness.” My physician despatched me for a second mind MRI in August.
I used to be sitting on the sofa with my daughter on the point of take her to highschool after I received the decision concerning the mind MRI outcomes.
It was the worst-case state of affairs: There was most cancers in my spinal twine fluid. When most cancers metastasizes there, it’s referred to as leptomeningeal illness, and it’s incurable. Once I rushed in to see my physician, and three extra medical doctors, that morning, I used to be informed I might stay two weeks with out therapy and 4 months with therapy.
I had 10 rounds of radiation on my complete mind and complete backbone. I realized there was a medical crew in Baltimore utilizing proton radiation. My insurance coverage denied this therapy, however I fought and received.
2025
In Baltimore, I stayed at a house for younger adults combating most cancers. I missed my daughter and husband again in Tampa, nevertheless it was good to have a automobile service to the hospital and the companionship of a survivor neighborhood with individuals my age.
The therapy itself, nevertheless, wasn’t good. I vomited all the best way dwelling afterward and all through the entire evening, though I’d been given anti-nausea treatment. The second spherical had me convulsing with nausea from the odor of burning flesh. I used to be informed just some individuals might odor that in therapy. After the primary 4 days of therapy, I used to be throwing up each different hour.
After 10 rounds, I’d misplaced 30 kilos and felt as if my esophagus was burned off. However I made it by way of. Now, I might return dwelling and have my first-ever surgical procedure: I’d have a port inserted into my mind that might ship a new vaccine straight into my spinal twine fluid. The vaccine was so new, I’d be the second affected person to get it.
For the following 16 Mondays, I’d present up for my six-to-eight-hour appointment. Though the vaccine took simply 10 minutes to manage, it might solely be combined after I checked into the hospital, so most of my time was spent ready. Because the vaccine trickled down by way of the port in my mind into my spinal twine, I might hear it. Then got here the ache, which I rated 10 out of 10. It was so extreme I couldn’t transfer for an hour afterward, so extreme that when my mother was driving me dwelling and hit a pace bump, I threw up all evening from the ache.
In January 2024, I reached my purpose of NED from the neck down, however scans confirmed I’d developed brain tumors. I switched to a breast most cancers therapy that crossed the blood-brain barrier. I might take this treatment as a tablet at dwelling, nevertheless it induced me to lose 80% of the imaginative and prescient in my proper eye. I began getting injections into the eyeball to forestall it from spreading to the opposite eye, nevertheless it didn’t work.
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I needed to swap to my third line of therapy in two years. I now get this chemotherapy each three weeks. Days three by way of 5 are exhausting, however I get two weeks of feeling nicely on this treatment.
My healthcare suppliers predicted I’d survive 4 months, however I’ve now lived for almost two years with leptomeningeal illness. I’m in uncharted territory. To this point, I’m the one one that has been in a position to end the vaccine.
I found the Leptomeningeal Cancer Foundation, which connects and advocates for individuals with this illness. I’ve met unbelievable individuals by way of this community, and I’m at all times keen to share my expertise with the vaccine with individuals who have questions. I encourage individuals to strive it, however I don’t sugarcoat it or make it sound simple.
The individuals I’ve met by way of this useful resource have helped me be taught to stay with my illness. I advocate for myself. I strive each trial, and each new therapy, even when it’s scary. I give attention to wanting ahead. My household has deliberate a visit to Jackson Gap subsequent March. My daughter, Palmer, has by no means seen snow. I need to do that first, and all of the firsts, together with her. She has so many to expertise.
I’m a logical individual, and I’m not in denial. I solely get emotional after I speak about Palmer. She’s the explanation I’m combating. She is mild and pleasure, and she or he’ll be the explanation I do know my household will probably be okay. She’s going to carry everybody by way of this.
After my analysis, I wrote 21 birthday letters for Palmer. I wished her to learn them on her birthdays after I used to be gone, to make sure she knew her mother’s love remained together with her as she grew up. I’ve now lived lengthy sufficient to throw away the primary 5 letters as a result of I can inform her I like her in individual. I’m decided now to throw out the sixth.
This academic useful resource was created with help from Merck and Daiichi.
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Our Actual Girls, Actual Tales are the genuine experiences of real-life girls. The views, opinions and experiences shared in these tales will not be endorsed by HealthyWomen and don’t essentially mirror the official coverage or place of HealthyWomen.
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