27 Apr Amanda Fordyce – St Joseph MO
I would be more than willing to share my story. First though, I must say there are some roadblocks to my story. I know little about the technicalities of my diagnosis such as exact staging. (The doctors were reluctant to talk about that with a teenager.) I don’t have any pictures of me at that age, which is a shame because they would show how ugly the scars were and just how much hair I lost due to treatments.
The story starts with I was fifteen when I got pregnant in school. During the pregnancy, I had a mole on my left arm that really began to change and grow. It had been there forever and had gotten bigger, but it really took off at that time.
After I had the baby the kids at school really began to notice the mole and it had begun to bother me. It would scale over and itch and man would it bleed! So I went to the dermatologist.
It took me over a month to get into see the doctor. They did a punch biopsy at that time and told me they really didn’t think it was anything serious. Two weeks late,r my father got a call from the derm office telling him they wanted to see me for a follow up visit. I went alone thinking it was just a follow up. I was sixteen it was January of 2002 I was a junior in high school. That day, they told a 16 year old girl who was all alone that she had melanoma and would have to have surgery and further treatment. They suggested I come back later with my dad. I was shocked I went back to school that day and went to basketball practice where I told my team mates and friends.
I told my boyfriend who said, “That isn’t like real cancer is it?” Well it is melanoma is not JUST skin cancer as I was soon to find out. After that, the days really seemed to mush together. A couple weeks later I was meeting with a surgeon begging her to wait until after basketball season was over to operate. She and my father refused to budge on the date. I was to have a 3 inch incision, she said. They did some sentinel biopsy mapping. Can I say ouch?! Then they whisked me away to surgery after that.
I was a little out of it after surgery but I can remember thinking OWW and HOLY CRAP! My 3 inch incision was 9+ inches. I had a huge dent in the back of my arm. MY tricep was now a bicep. Later, I was told I had nodular melanoma. I had another incision under my arm where they had removed the sentinel node as well as some others. The tumor had grown down and invaded the muscle and underlying tissue. I was told I was lucky one in a million people with that depth of involvement without further meds.
I was able to play in the last game of the season but a few days later, I started treatments. It started with a month of IV interferon. The first week sucked badly. They stuck me over 7 times to start the IV the first day. That was the closest I have ever come to passing out. I slept the 2 hours back home but an hour or so later the chills started. A wonderful side effect…oh so cold and my body just trembled uncontrollably they gave me meds for that but the meds gave me such a horrible headache the next day. I had a headache whether or not I took the meds. The next day, the IV was bad another round of being stuck like a pin cushion began. It was horrible. It went on like that for a week: pin cushion…IV…Ride home….sleep…shiver…sleep…sick…up at 6 am…ride…pin cushion.
Finally at the end of the week the docs realized they would never get through the month of treatments using regular IVs they scheduled me to get a central line. They took me to a room once again by myself and took a sharp wire that had a plastic tube on it and shoved into my chest at my collar bone they had to scrape the back of the bone as they advanced it so they wouldn’t accidently puncture my lung. I cried silently. It hurt so bad. They had numbed the site but said there was nothing they could do to numb the areas on the inside. The little tube ran to superior vena cava which is a large vein that flows directly to the heart. Then the doctor stitched the plastic tube down to my chest. I looked like a freak with little wires hanging out. When the doc stitched the tube down he forgot to numb the skin around the tube once again…OUCH! That was the worst pain I ever had (and I have had 4 kids without epidurals.)
The next 3 weeks are a blur. I slept so much I was awake to shower and dress and would sleep on the way to appt and the way home. I rarely ate, just when forced to. When I couldn’t sleep anymore, I told the doc that I couldn’t sleep but was so tired. They gave me sleeping pills. So I slept some more. Finally the month of IV treatment was over they took out the central line-much better coming out than going in
But it wasn’t over. I had to now do 11 months of injections 3 times a week with oncology appts once a month. Didn’t these people know I had stuff to do? Now 17, I had summer softball and basketball coming up. I had a baby and a boyfriend. I was a straight A student. MY oncologist said I would probably have to repeat my senior year because I wouldn’t be able to keep up… AND sports were out! They never asked my opinion. They never considered what I might have to stay. They spoke about what to do about me while I was in the room like I wasn’t even there.
I was determined to do exactly what I did before I got sick…and I did. Some days were harder than others. I would have to drag myself to school and it killed me to move my head and look down at my desk at my assignments. MY teachers and school were very understanding. They didn’t yell at me when they caught me sleeping in class. I continued to play sports although that had gotten even harder. I had lost like 30 lbs. The coach said if I lost any more weight I would not get to play anymore. I began to micromanage my food. I would almost say I was anorexic. I had no control over anything except what I ate. Luckily the people around me noticed. I was gently encouraged by everyone to eat I was sent to lunch early with a friend at school.
My aunt had to give me the shots. I never could give them to myself. They were such a pain in the butt every Mon, Wed, and Friday I had to go there and get a shot. It really sucked getting home late from a ballgame and then have to go get a shot. I knew the next day I was going to feel horrible. I can’t lie, I did miss a few. I couldn’t go away on school trips unless someone agreed to give me my shot. EMBARASSING! And to make it worse, my hair began to fall out. I didn’t lose it all but might as well have. My pony tail was smaller than my pinky. That part almost killed me.
Finally the year was over and so were my treatments. A couple months later I graduated high school with a 3.89 GPA. I was a few pounds lighter and a little balder, but I was alive. I had several years’ worth of frequent follow ups. But I am still melanoma free. I am now almost 26, I have a BSN, am married with 4 kids, but I came very close to being the late mother of an orphan girl name Lauren.
About 5 yrs ago, my little sister was also diagnosed with melanoma. She was 14. Luckily, we got it early and she has a 2 inch scar to show and never had to have treatments
In case you are wondering, I never intentionally sun tanned. I had a few bad sunburns as a kid. I have very fair skin and red hair and I always burn. My little sister is not a sun worshiper either but also had a few bad sunburns as a young kid.
I avoid the outside and the sun now. I have not mowed the yard since I was 16. I worry every day about when it will come back. I worry about my kids. They too don’t go out in the sun much. It’s a horrible cloud that hangs over my head and will never go away.
I hope this story helps you realize how harmful the sun and tanning is. If it saves one person from that cloud then it is worth it.