Cancer Left me with a Trophy
Have you ever looked at your life? I mean, have you really taken a look at your life and asked yourself, “why is this happening?”
My name is Joan. They told me I could not have children, and here I am, a 48-year-old divorcee and mother of twin teenage boys, my miracle babies. Some of you may relate to my journey, and some may be motivated to find your purpose in life. As I reflect upon my life, I overcame a lot of obstacles. Here’s my story…
I immigrated to the United States of America from Port au Prince, Haiti when I was five years old. My older brother, Jean, and I reunited with my mother in Crown Heights a sector of Brooklyn, NY. We were immigrants in a foreign country, did not speak one lick of the English language, and only knew our family members that lived in the States. One thing I learned is that life was going to be hard, and we sure did struggle. We resided with my aunt, the eldest of my mother’s siblings, husband, and two teenage children. Can you imagine what life was like living in a three-bedroom, one-bathroom apartment with a total of nine occupants? It was a struggle, but we managed.
A few months after being in the USA, my mother noticed a lump in my left arm. She asked me in our native language, “Ou tonbe?” (Did you fall?). I answered “non” (no) at the age of five. My mother thought I was clumsy. She believed that I was probably careless, fell, and did not mention anything to her about my lump. She did what the usual Haitian person would do if someone had an injury, she applied l’huile mascriti (Haitian castor oil) directly on my lump. I still recall when I started feeling excruciating pain in that lump area. I told my mother in my native language, “Manman, bram ap fem mal” (Mommy, my arm hurts).
Being a foreigner, moving, and having to adjust to such an unfamiliar place, my mother grew up thinking that rubbing oil on an injury was the best thing to do. The possibility of cancer never crossed her or anyone in my family’s mind. My family viewed cancer as a disease you get when you’re an adult, and cancer was not in my family’s medical history. My precious grandmother Lise Eva, a prayer warrior; we all knew as Manico, visited one day and noticed the lump in my arm. She immediately went to the kitchen and started her homeopathic remedies. Haitians swear by l’huile mascriti (Haitian castor oil) and think it heals all. Whether you have a cold, fever, muscle aches, this is our go-to product. My granny rubbed it on my arm repeatedly while praying. All I could do was look around the walls of the kitchen and wait. I didn’t know better; I was a kid.
In April 1978, I was diagnosed with osteosarcoma in my left humerus. Osteosarcoma is a rare form of bone cancer; it typically occurs in the femur bone in children around 11 years of age. I was five years old going on six, and it was in my left humerus…. How? Why? No one could answer any of these questions. I was young, scared, and confused, especially with little to no knowledge of the English language. All the doctors, nurses sounded like Charlie Brown to me, “wah wah wah…” I remember going back to my aunt’s apartment and my mother not comprehending the severity of this tumor while informing the family. My family was concerned because they did not know anyone who had cancer within our family, and a child being diagnosed with osteosarcoma, surprised them. I remember Manico going to the kitchen praying and preparing the homeopathic remedy. You knew it was a severe matter once the l’huile mascriti (Haitian castor oil) needed to be heated. She would continue to rub the oil in that area, and I loved her for trying to heal me. I miss my angel.
Before I could start any surgical procedures, I had to undergo cycles of chemotherapy for shrinkage. I lost all my hair. The chemo left my lips black and my teeth yellow due to the acid reflux and vomiting. There were no such thing as pills to help with nausea. There was no prevention. My precious mother had to sign consent forms every single time medication was administered. I know the sight she had of me going through this at such a young age was painful and hard for any mother to endure. The night before my surgery which we called, “the big day,” I was sitting in a room with a nurse and my mother. It seemed like they were having a serious conversation based on their tones and facial expressions. I had just turned six-years-old. I was staring at the wall in the room, the nurse called my name, spoke to me, I drew a picture, and that was it. Her words came in one ear and out the other. I wish I knew or understood that the following day was “the big day.” Surgery day. I did not comprehend that the surgery meant that I would no longer have both my arms the same length. Had it registered, I would have laid in that bed that night and held on tightly to my left arm and kissed it goodbye. The saddest part is I don’t even remember my “old” arm. All I have are pictures.
You never know how important your limbs are until you lose them. Having cancer opened my eyes. It made me appreciate life more. People do not realize how blessed they are to do things such as raise their hands in the air, eat with both hands, and put deodorant on with no issues. I was six years of age, and no longer had my clavicle bone. I would watch people and wondered if they realized how blessed they were and if they knew how important these little things were in life. My bone was removed and replaced with a plastic bone replica. My late surgeon did not want to amputate my arm and found an alternative. They told me once I stopped growing, they would remove the plastic bone and replace it with a prosthetic. I asked them what a prosthetic was, and they told me it was a metal rod.
During that period of my life, I started to speak English (although it was considered to be broken English.) I got excited and asked the surgeon if it will make me strong, and if I will be able to lift people with it. I had no nerves, I could not function my fingers, but I was very happy for an alternative. I asked the surgeon in my Haitian accent, “Will my “hom”(arm) make that “en en” sound? you know like in the movie?” The doctor looked puzzled, and I shouted, “you know Jamie Sommers, the bionic woman?” My surgeon simply said, “I don’t know about that sound effect, but you will have that metal rod in your arm.” I was ecstatic.
I went through so many changes, physically, mentally, and emotionally. My mom was told that I would change and become aggressive as I grew older. She was not having that as a Haitian woman. I recall one incident that I had in the hospital while receiving treatment. I was so angry about being poked nonstop, my veins were so thin, and being young and naive, I thought my mom was allowing them to hurt me purposely. I shouted out, “dokter my mutha has a peruk!” (Doctor, my mom has a wig), and as I tried to pull off her wig, she held my arm down and told the doctor I was asking for my dad. The doctor shouted, “Get him in here then!” I continued shouting peruk (wig). As I sit here and write my story, I think the surgeon thought my father’s name was “Peruk.”
Going through multiple surgeries, several chemotherapy cycles, and radiation therapy on two separate occasions, having my last rites administered, God kept me. I am not religious; I am spiritual. I am a Christian, a woman of faith, and truly believed that God had kept me through it all for a reason. At the age of 11, the cancer metastasized in my left lung, which resulted in half my lung needing to be removed. As a result, the treatment was prolonged. I had to put school on hold. During most of my youth, I was confined to Memorial Sloan Kettering Cancer Hospital in NYC. Social interactions with children were limited. The battle continued; emotionally, I continued to struggle; it was a horrible time, and I did not have anyone to share my feelings with. I did not fully comprehend all the changes that were occurring in my life. The older I became, the more reality struck, and I realized how the world is one big judgment zone.
I received my bionic arm (prosthetic) when I was 18-years-old. It was an internal metal rod attached to my lower bone. I was labeled as “the girl with the short arm.” As a teenager, I was at the age of self-discovery while trying to survive the ridicule and deceit from other people my age. These people did not know my story or my history, and I indeed felt sorry for them. I started watching Bruce Lee movies to practice my kicks and punches, just if I had to kick some butt and protect my trophy or practice self-defense because I was in fear of being attacked.
After 30 years, it seems as if the diagnosis continued. Thirty years after being diagnosed with osteosarcoma, I was diagnosed with hypothyroidism. I was told this occurred because, in the 1970s, they did not have the proper gear to protect my chest from radiation. I remember crying every day at every moment, and that is when I let go and let God. I surrendered to God and got back up on my feet. I had to adjust to taking medication for the rest of my life because my thyroid gland was burnt. Later on in my life, I was diagnosed with homoplastic osteoma (benign bone growth on my skull), which is being monitored. I was also diagnosed with lymphedema in my left arm (my surgery arm). Today, I am in my late 40’s. I thought I would reflect on my medical rodeo and be provided with the reason as to why this happened to me, but I am still adding it to my list of diagnoses.
I wish I could provide a long list of people supporting me throughout my journey. A few have been loyal to me throughout my life. I trusted so many people, those I considered my family, but I was betrayed, backstabbed, and even told lies on. It took me years to realize that people who judged, gossiped, and lied about me, even bullied me, were simply insecure. I have learned to let them go and surrender all my frustration to GOD for him to do his part. I no longer take time trying to understand or make sense of why people are so cruel. I simply mind my business and stay away from negative energy. I am happy to be an outcast; looking different is a compliment. I have a few people in my circle that I can go to, and I feel nothing but empowered.
Today, life is complicated, and I still suffer from discomfort in my bionic arm, but I have learned that adversity willingly has the greatest virtue. I realized I am more than cancer despite my scars and the loss of my limbs. My faith in God and my sense of humor is what keeps me going; it keeps me grounded. Although cancer made my arm shorter and completely changed my perspective on life, I will continue to carry that trophy as a reminder that I am here for a reason and that I am proud to be different and seeking what God has in store for me. To all my warriors in the universe: EMBRACE your scars, KISS your scars, KEEP fighting, and DO NOT allow anyone to steal your joy! Cancer does not define who you are! You are BEAUTIFUL!
