Neurofibromatosis. Harder to say, harder to live with. But what is it? NF (for short) is a genetic condition that affects 1 in every 3000 births. It is more common than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined, and yet it’s still a complete mystery to the medical field. Nf is the mutation of the 17th chromosome, and causes (mostly) benign tumors to grow along the nerves.
By the time I was 10, I’d already had 6 surgeries, one of which was to remove a tumor from my spinal cord, leaving me with two fancy rods in my back. NF has two types, type 1 and type 2. Both can cause things, such as physical disabilities, tumors along the nerves, scoliosis, vision and hearing problems, and learning disabilities, just to name a few. Although most tumors are benign, people with NF have a higher risk of developing cancer in their lifetime. I recently found out that I have an even more rare type of NF1, which hasn’t had much research done on it yet. This subtype basically makes it more easy for me to develop cancer.
Growing up with NF, lumps, and bumps on the skin were pretty normal. When I was 27, I noticed a lump on my breast, that was different than my NF lumps. This one was quite large and causing my breast to concave slightly. I knew that this was not normal for NF, so I decided to get it checked out. After calling probably 15 breast doctors and getting turned away by each one because I was “too young”, I was finally able to get into Planned Parenthood.
I was excited to finally be seen but unfortunately, this doctor just dismissed it as my condition and did not want to do any further testing. But I know my body and I knew this was something else. She sent me home with a follow up to return in 6 months.
Well, 5 months later I ended up in the ER, not being able to breathe with a 135 heart rate. I was told that I had bronchitis and sent home with some antibiotics. Again, I know my body and I knew that this was not bronchitis. I’ve had bronchitis before, so I knew what I was feeling was something else. I was getting frustrated, constantly getting turned away by doctor after doctor.
After I left this ER, I decided to drive to another ER, where they ran one test and told me I had fluid in my chest. Before I knew it, I was being rushed away into emergency surgery to remove 3 liters of fluid from my chest. I was later told I had a pericardial window, where they had to biopsy a small piece of my heart.
Everything had happened so fast, I barely had time to call my family to let them know what was going on. I woke up from surgery later, in ICU with a pretty big tube in my chest to drain the remaining fluid my body was giving off. I couldn’t talk due to the breathing tube I had in my throat during surgery, which had caused some bruising. I had an oxygen mask on, pumping 13 liters of oxygen into my lungs because I was unable to breathe on my own. I honestly couldn’t tell you how long I was in surgery, or how long it took me to wake up. The day and weeks following it are honestly a blur. I was told that the fluid they took out during my surgery was being sent off for testing. I wasn’t sure what they were testing for and didn’t think much of it when they said cancer was one of the things being tested. I was 27, ran every morning, went to the gym, just graduated with a Bachelor’s degree. I was applying to grad school, had no family history of cancer, and I was not worried about that.
February 23 is one of the dates that will always stick with me. That is the day I was rushed into emergency surgery. The day that everything changed. It was just a few days later when I thought everything was getting better. I was still in the hospital, I was being taken out of ICU and moved to a less emergent wing of the hospital. I no longer had a tube in my chest, and I was able to breathe on my own. I was now in MICU, and I still have not received my results from the fluid and heart biopsy. I wasn’t worried though. No news is good news, right?
After being in MICU for just a day, on March 1, my hospital doctor had come into my room and told me I was able to go home. I still wanted my test results, so I asked him if I could see them. What he said next, I’ll never forget…
“Oh yeah. I forgot about that.”
He forgot… He left the room and came back 20 minutes later. I’m sure you can guess what he said next.
“Well you can’t go home, you have cancer.”
He wasn’t sure where the cancer was when I had asked him. He said it was probably colon cancer because “that’s a common cancer”. So I lifted up my gown and pointed to the lump on my breast. The lump I had spent the last 6 months trying to get looked at. The lump I knew wasn’t just a lump.
“Oh yeah, you’re right. It’s probably breast cancer.”
The next day I had a biopsy done, and I’m sure you can guess the rest. Three days later an oncologist entered my room and told me that I had breast cancer that had spread to the liver and spine. Before I knew it, I had about 10 doctor appointments and was being scheduled for chemo. My oncologist told me I would be cured of cancer after 6 rounds of chemo. After meeting with my oncology nurse, she had told me it was stage 4 and metastatic. I was not sure what stage 4 meant. I went home and did a lot of research on what that meant. After learning what metastatic and what a treatment plan meant for that, I knew I did not want to stay with this oncologist. I knew that 6 treatments would not cure me. There is not a cure for me.
It is important to be your own advocate. If you are not comfortable with your doctors, then you need to get a second opinion, even a third and fourth until you are happy with your decision. I decided that it would be best for me to take time off work, and move in with family. I chose to live with my sister who lived in Louisiana.
I’m currently still receiving treatment. After 20 rounds of IV chemo, I’m now on a pill form of treatment, along with two monthly shots. I know that I will be in treatment for the rest of my life, but I know that you also should not listen to the outdated statistics. Everybody is different and everybody responds to medicine differently.
I keep a positive attitude. I think that’s important, especially after a diagnosis of cancer. You’re going to have your scary moments, but just know that you will get through those scary moments. Having cancer sucks, but you can’t dwell on the negatives, because that’s all you’re going to think about.
I have cancer, cancer does not have me.
That’s something I always tell myself. Cancer is just something I have, along with NF. This is not my whole life, just a small part of it. I’m much more than my conditions. I’m the same person I was before I was diagnosed, I just take a lot more naps now.
GRYT is being diagnosed with stage IV, metastatic breast cancer, 2 months after receiving your college degree.
GRYT is leaving your dream job to focus on your health.
GRYT is accepting you can’t control everything.
GRYT is appreciating each day and living your life to the fullest.