English
As reported to Erica Rimlinger
Six months after my first pregnancy, I noticed a dough in my mother and indicated it in a medical consultation with my doctor. “That is normal,” said my obstetric gynecologist. “That happens when you are pregnant.”
Three years later, in 2022, I was sitting with a hospital robe looking at a TEP of my body. Each spot of light in a black background showed the places where there was cancer. The tomography was as illuminated as the Las Vegas strip at night.
That dough was not “normal.” It was breast cancer with a her2 gene mutation and by the time it was detected, three years later, it had already spread everywhere.
That image shocked me a lot, but I knew that something was not right in my body after my daughter’s birth and for the next three years after that. My hair darkened, fell and broke easily. He slept 12 hours at night and took two -hour naps to cope with the day. I had consultations with specialists who diagnosed me hypothyroidism. In the summer of 2022, I detected a cleft in my mother, as if an implant had broken, but I had no implants. Again, a dermatologist told me that it was “normal.”
In the fall of 2022, I felt pain in the muscles of my chest and felt a dough when I was showering. This time, my doctor told me to submit to a mammogram and ultrasound, and after that to a biopsy, which emitted the diagnosis. He was a little over 30 years old, she was a mother of a little girl, she had always exercised and had no family history of cancer. How could you have breast cancer? My profile did not square with the typical criteria.
But the TEP, which shone a lot, showed a breast cancer that had spread to my lymph nodes, thyroid gland, kidneys, liver, stomach, skeleton and more.
I immediately started chemotherapy and hormonal suppressors. My insurance did not cover a brain RM, although I had cancer everywhere with a neck piece and breast cancer with her2 gene mutation is commonly directed to the brain when it spreads. My doctor made the efforts to make the brain RM and, in February 2023, I received negative results.
Then I received more good news: in April 2023, I finished chemotherapy and my tumors had shrunk considerably. My liver enzymes were normal. I continued with hormonal therapy and my hair grew again. I regularly submitted to tomographs to ensure that my evolution addresses my goal of a complete remission. My doctor referred me to a second brain RM in August.
I was sitting on the couch with my daughter, getting ready to take her to school when I received a call with the results of my brain RM.
It was the worst scenario: there was cancer in the liquid of my spinal cord. When cancer is metassestatized in that place, that is called leptomenínngea carcinomatosis and is incurable. When I went as soon as possible to visit my doctor and three other doctors, that morning, they told me that I would have two weeks of life without treatment and four months with treatment.
I submitted to 10 rounds of radiation for my entire brain and my whole spine. I learned that there was a medical team in Baltimore that was using proton therapy. My insurance denied this treatment, but I made the efforts and I was successful.
2025
In Baltimore, I stayed at a residence for young adults who have cancer. I missed my daughter and my husband who stayed in Tampa, but it was nice to have a transport service to the hospital and the company of a community of survivors with people of my age.
The treatment itself, however, was not pleasant. I vomited throughout the trip home and throughout the night, even when they provided me with antiemetics. The second round caused her to have seizures and nausea due to the smell of burnt meat. They told me that some people could smell that during treatment. After the first four days of treatment, he vomited every two hours.
After 10 rounds, 30 pounds of weight had decreased and felt a terrible burning in the esophagus. But I survived. I could now return home and have surgery for the first time in my life: I had a catheter inserted in my brain that could provide a new vaccine directed to the liquid of my spinal cord. The vaccine was so new, that I was the second patient who received it.
During the next 16, I went to my appointment that lasted six to eight hours. Although the administration of the vaccine only lasted 10 minutes, it could only be mixture after entering the hospital, so most of the time passed. I could hear how the vaccine passed through the catheter in my brain towards my spinal cord. Then came the pain, to which I gave a rating of 10 out of 10. It was so serious that I could not move for an hour after its administration, so serious that when my mother took me home and went through a speed reducer, I vomited all night because of the pain.
In January 2024, I reached my full remission goal from the neck to the feet, but tomographs showed that I had developed brain tumors. I changed the treatment for one that crossed the blood brain barrier. I could take this medicine through a pill at home, but this made 80% of the view of my right eye. I started receiving injections in the eyeball to prevent this situation from spreading to the other eye, but did not work.
2025 (Foto/Danielle Nicole)
I had to make the change to my third line therapy in just two years. I now receive this chemotherapy every three weeks. The three to five days are difficult, but I feel good for two weeks with this medicine.
My medical care providers predicted that I had four months of life, but I have already lived for almost two years with leptomanine carcinomatosis. This is something unprecedented. Until now, I am the only person who has been able to administer the vaccine completely.
I found leptomeningeal cancer Foundation, which establishes connections and advocates people with this disease. I have known incredible people using this network and always try to share my experience with the vaccine with people who have questions. Reason people to approve it, but I indicate the truth by telling them that it will not be easy.
The people I have known using this resource have helped me learn to live with my illness. I attend my needs. I try each trial and each new treatment, even if I am afraid. I focus on the future. My family planned a trip to Jackson Hole in March. My daughter, Palmer, has never seen the snow. I want to be with her when doing this and many other things for the first time. He lacks a lot to experiment.
I am a logical person and I accept reality. They do not overwhelm my emotions when he talked about Palmer. She is the reason why I fight. She is my light and joy and I know that my family will be well for her. She will help us deal with this.
After my diagnosis, I wrote 21 cards for Palmer’s birthdays. I wanted them to read them on their birthdays when I was no longer, to make sure I know that I would always have Mom’s love during their development. Now I have lived enough to discard the first five cards because I can tell you that I love her in person. I am determined to rule out the sixth letter.
This educational resource was prepared with the support of Merck and Daiichi.
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