Written by: Amanda Rose Ferraro, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
Imagine the anticipation of your first child’s birth. The excitement you feel waiting to hold them in your arms for the first time and the enthusiasm you have as you arrive at the hospital. Now try imagining your infant inhaling their amniotic fluid, almost suffocating, and needing to be rushed to the Neo-Natal Intensive care unit with double-pneumonia. That is how my life started.
My childhood was seeming average until 1994 when my three-year-old younger sister, Samantha was diagnosed with Perthes Disease. My sister had to live in a brace that held her hips in place during the day and then at night, my mother would wrap each of her legs in ace bandages up to her knee in this contraption that was attached to a hospital bed in the middle of our living room.
Now within the same time frame that my sister Samantha was bound to hospital bed, my mother’s sister, my aunt Abbey was diagnosed with a cancer called Ewing Sarcoma. It was 1995, I was an innocent six-year-old, witnessing my family strive to overcome hard times. Nonetheless, in September of 1996 I had my very first brain surgery. It felt like every time the phone rang there was going to be worse news.
Now, about a year after I had my first brain surgery, my sister, Samantha was diagnosed with P.N.E.T. (Primitive Neuroectodermal Tumor). A type of brain cancer. Now when my sister was in the hospital, undergoing cancer treatment, my mom would stay at the hospital with her, my father would go to work so we had health insurance so we could continue to be able to afford the necessary treatment for my sister and I lived with my grandmother.
Up until this point in my life, there were so many events that were revolutionizing for me and unfortunately, there would be so much more. In 1998, my Step-Grandfather passed on April fools’ day. Then on Halloween of 2000 my father’s dad passed away (my Poppie) and just months later, in February of 2001, my Aunt Debbie passed from breast cancer. In 2003, my Grandpa O passed away from Esophageal cancer that metastasis throughout his body. He actually passed away a day after my 15th birthday. In 2004, I was hit by a Pepsi truck while I was riding my bike and ended up with an L3 and L4 fracture of my spine, my spleen had been torn, I had a concussion, and still to this day have shards of metal in my right elbow from smashing into the grill of the truck. Then in 2006, my senior year of high school, I had my second brain surgery. During the surgery, my cyst ruptured when they cut into my skull. Because of the rupture, I started losing blood and needed to have two blood transfusions. Also, during that brain surgery, the neurosurgeon nicked one of my nerves from my eye, and I came out of surgery completely cross eyed and with double vision. I have double vision to this day because of that surgery, but at least I still have my vision.
So, within a year from undergoing my second brain surgery in 2007, a third surgery was scheduled. The hole that the surgeon made, to drain the cyst had closed and it was causing pressure on my brain. It was also found that I had hydrocephalus, which is excessive cerebral spinal fluid on the brain. Throughout my recovery from my second brain surgery, I started having extremely painful headaches all over again, so the neurosurgeon scheduled a third brain surgery to see what was causing these headaches. Talk about a bump in the road.
While my friends were at college, choosing careers and living their lives, I was home recovering and the only thing I was choosing between was what channel to watch.
Now this brain issue I was having wasn’t ending, because in 2008, I had my fourth and fifth brain surgery. I was seeing a new neurosurgeon that recommended a Ventriculoperitoneal shunt (VP shunt). November of 2008, the VP shunt was placed in my brain. Quickly there was a problem, and the shunt was draining so much that I could barely sit up without the pressure dropping drastically causing me excruciating pain. So in December 2008, a month after the shunt was implanted, a revision was made, and a valve was placed to drain only a specific amount of CSF at a time so I would not have headaches.
The shunt lasted for about three years, but in 2011 I needed a sixth brain surgery. I had to have a complete shunt revision which included new hardware, new valve, and a new location. The new shunt is a Ventriculoarterial shunt (VA shunt), which means it goes from my brain, through my jugular and into my heart, where it drains all the CSF and then my body will remove it.
In replacing all the old hardware and testing it, the infectious disease doctors found staph infection living in my shunt. If that infection would have gone to my brain, I would not be alive today. And the infection was so bad, that I had to spend two-weeks in a nursing home (that’s a story for another time) with intravenous antibiotics given every four hours 24/7, to kill any infection that was left in my body from the shunt.
Now, this is not a blockbuster hit, this is my life. And just when you think the plot couldn’t get any wilder, in 2013, I found out I was pregnant, and I needed to have a 7th brain surgery. The VA shunt that they placed in 2011 was now scrapping the right atrium of my heart. At just 16 weeks pregnant I had to have brain surgery to shorten the shunt piece so it wouldn’t tear my heart. Luckily, my son went through the surgery perfectly fine, and he was born on his due date, very healthy.
For the first three years of my son’s life, everything was good. My health was great, my son was healthy, and our little family was thriving. Until May of 2017 when I was diagnosed with Acute Myeloid Leukemia. My treatment plan was rigorous. I ended up staying in the hospital a total of 33 days for my first chemotherapy treatment. 4 of those days, I was able to hold my son in my arms. I had never before felt this emptiness inside the way I felt when I was sitting in that hospital bed bald, broken, and ready to quit. I wanted to just give up. Have you ever heard a cancer patient tell you it’s easy? No, because it’s not.
In February of 2018, after a consolidation chemo treatment and four consolidation chemotherapies, we thought I was cancer free. In September of 2018, I relapsed. I needed a second induction chemo treatment, this time with stronger chemo, and because of a genetic mutation that I was found to have called TP53 (which is a cancer-causing mutation), I was found to have Li-fraumeni syndrome. This made my cancer very dangerous, and I was given a 10-20% chance of surviving. That’s when my oncologist suggested a stem cell transplant. If I wanted a chance of beating this blood cancer, the only shot I had to survive was to have this stem cell transplant. And two months later in November of 2018, I became a man from Germany.
Today, I am a seven-time brain surgery survivor, a two-time cancer survivor and a stem cell transplant recipient. I have been through some daunting and menacing experiences in my life, but I have always found a way to overcome the negative and see the glass half full.
I remember having a talk with my mom one day, as I’m sitting in the hospital and I said to her something along the lines of, “Mom, I can’t do this”, and I remember her staring into my eyes and saying, “Yes you can, you have to, that little boy needs you.” And something within me clicked, and I knew that I had what it was going to take to remain positive, be optimistic, and beat cancer.
When my sister and I were younger, my parents would always remind my sister and I that there is a positive side and negative side in every situation, but it was up to us choose how we wanted to feel about it. There will always a positive and negative in every situation or circumstance that come across but there is always a choice. Now I have been through some hard times in my life, and during some of the toughest phases of my life is where I truly have learned to see good over the bad.
When I was younger and we were navigating through health problems and death in our family, I protected myself from feeling hurt or sad by journaling about what I was feeling. It was a way for me to release the pressure of what I had on my mind, and it was a way for me to release the negativity. I would separate the good from the bad (like a pros and con’s list) and outweigh them. Journaling became a huge technique that I used to when I was sad or upset, and it also helped me with my anxiety.
During the time that my sister had cancer and I lived at my grandmother’s house, was one of the most difficult times of my life. I spent a lot of time to myself. I missed my parents, and I felt lonely. But during this duration of time, I started developing new techniques that I used to deal with my emotions and anxiety, and I was able to remain positive and levelheaded no matter what situation arose.
I used music as an outlet and started making my own breathing techniques. By inhaling and exhaling along with the melody of a song, I would create my own type of breathing exercise. These breathing exercises really helped me modify the emotions I was feeling from the negativity that was happening in my life. It was a coping mechanism that I had come accustomed to on my own.
When I was diagnosed with cancer, I could have easily drowned in pity, sorrow, and pain. The anguish I felt as a mother, was pure perdition. Leaving my child with no answers to give him as to when I would see him again was pure torture. Hearing your baby screaming crying on the other end of a phone line, begging for you to come home, and asking you if you love them, is crushing. But I used the sadness that I caressed my mind, and I debilitated its power over me. I found a voice in all of the pain and distress that I had been through, and I started getting loud.
During my cancer journey, I went through a lot of transformation while sick in a hospital bed, fighting to stay alive. I learned a lot about myself and how far I was willing to push myself. I studied new breathing techniques, I read more poetry, I wrote in my journal, and I started a blog so I could communicate what I was going through on a daily basis with anyone who wanted to listen. I used my blog as a way of therapy for myself and in writing about what I was going through, I would release the tense hold that my emotions had on me. I also wanted people to actually get to see the good, the bad, and the ugly side of cancer. I started to bring attention to all aspects of the cancer journey. I filmed my first chemo treatment, I filmed my mom shaving my head, you name it, it was a topic of discussion for me. But it was a was for me to get the negative off my mind and live in the positive. During this time, I was able to find a voice in all of the pain and distress that I had been through in my life, and I started getting loud.
The years of hardship that I went through, and the coping techniques that I used for myself throughout my life are now evolving into bringing awareness for cancer, and how to remain optimistic through pain you may experience. Yes, I have been through tough times, and I have had my fair share of spiraling emotions. But I also have gotten back up when I never thought I could again. I was able to get through the darkest times of my life, by having optimism and believing that this hard time would only be bump in the road.
Don’t get me wrong, in the chaos of this bump in the road, it can get drastically difficult, but if life is easy and everything goes right all the time, what lessons are you learning? These hard times teach you how to deal with different emotions. These lessons teach you how to cope when things go awry. Hard times make strong people, and by remaining positive and fighting to stay strong, you can get through anything. Believing in yourself hold so much power. You can win that race. That you make that team.
Granted, all of our journeys are different, and we all go through ups and downs. But you can choose to see the glass half full. Learn to appreciate the sentiment that a positive mindset can have and don’t forget that you have the power to choose positive over negative. You hold the key.
Amanda Rose Ferraro, Executive Contributor Brainz Magazine
Amanda R. Ferraro is a two-time leukemia survivor and stem cell transplant recipient, an entrepreneur, patient advocate, blogger and life coach. After she was diagnosed with leukemia, she started a website to give free resources to cancer patients as well as sharing her experience. Amanda's writing can be seen in Cure Magazine, Cancer Today Magazine, The Philadelphia Inquirer, Elephants and Tea blog, Elly (a phone app), the NBMT Link blog and she has an abstract published in the Research Journal of Oncology. Amanda is a very outspoken patient advocate who strives to make changes in the world of cancer. Her mission: To make each cancer patients feel like they are not alone in their journey.
