Education, prevention and support for the most serious form of skin cancer.

Carrie Schoenholtz

I am a Cape Cod girl.  I was born and raised there and like anyone else from the Cape, I spent long summer days on the beach my whole life.  Comparing sunburns was a rite of passage for me and my friends.   I remember having the mentality that you had to burn first to get started on your tan every year.  Using sunscreen only made it take longer to get to that sought after golden brown.

In June of 2009, I was 33 and married with one child and trying for another to make our family complete.  I had long accepted sun screen as part of my daily routine and had since rarely burned.  I had a mole on my right arm that my husband and I thought looked a little funny, as if 2 moles of different colors had grown together.  I knew I needed to get it checked but I kept putting it off given that was just one more thing to fit into my very busy schedule as a working mom.

One day in late June I noticed the mole had raised up a bit, which definitely increased my need to make that call, but again I put it off. A few days later, it started to bleed.  I finally made the call and was told it would be months before the Dermatologist could see me. They then asked me what had prompted my call, and I told them about the changes I noticed, and the bleeding. They found room in the doctor’s schedule the next day.

There was nothing alarming about the appointment.  The Nurse Practitioner didn’t think it looked too bad but we sent it out for biopsy to be sure.  They called me 2 days later with the news that the mole was malignant melanoma.  Ask any melanoma novice and a “thin melanoma in a female extremity” is about the “best” kind you can hope for.  Mine was only a 6mm depth.  However, due to the “active” characteristics my particular mole exhibited, I would have to have a sentinel node biopsy to be sure it hadn’t spread.

They sent me to meet with a surgical oncologist at Mass General Hospital.  Being in the cancer wing was surreal and I couldn’t wait to leave.  Due to scheduling conflicts, I had to wait 2 weeks to have my surgery, and another 2 to get the biopsy results.

The weeks leading up to the surgery weren’t so bad.  I was nervous as this was to be my first surgery ever, but I was confident that it would go well and I would be moving on with my life right after.  The surgery itself was uneventful, but the 2 weeks after the surgery were a nightmare.  We’re not sure if I had a reaction to the anesthesia or withdrawal from the scopolamine patch that I wore to combat motion sickness, but I was in really bad shape.  I got a migraine for the first time ever and the excruciating pain from that left me bed ridden and miserable.  The medicine they gave me to combat the migraine gave me vertigo which was even worse than the migraine!  I wasn’t able to close my eyes without spinning and almost throwing up.  The medicine they gave me to combat the vertigo turned me into a non-responsive zombie.  My sister had to come and live with us for 2 weeks to help my husband care for our son since I was in bed and no help at all.  On top of all of that I had pain all the way down my arm because of nerves that were disrupted during the lymph node biopsy.  The sentinel node is essentially in your arm pit and I never had an appreciation for how many nerves, tendons, and muscles convened in that location!  I equated the pain to a piano string stretched too far between my thumb and my shoulder.  I couldn’t lift my arm over my head and picking up my son was out of the question.  Just over 2 weeks after the surgery, the biopsy results came in indicating I had clean margins and my lymph node showed no signs of any cancer cells.  That was good news, but I was not good.

All I wanted was to get through it and put this experience behind me.  I wanted to get back to my family and get on with life.  I was not prepared for the very visible big, ugly scar on my arm, or the less visible anger and depression I was feeling.  The side effects were completely unexpected and while the Dr had shown me a drawing of how he was going to have to lengthen the incision to effectively close the hole they were going to have to dig in my arm (1 cm in radius and depth around the site of the mole), I must have missed the scale.   The incision was almost 4 inches right down my outer arm.

Due to the trouble with finding shirts that effectively conceal my scar, it became an endless source of embarrassment to me.  It’s impossible for people not to stare, and sometimes comment, and my sons friends would all ask to touch it.  I tried to use it as a tool with the kids and would tell them that if they didn’t want a scar like this that they needed to wear their sunscreen, but really I just wanted it to go away.  The surgery was two and a half years ago and just last fall I asked a friend to photo-shop my scar out of any pictures.

The whole experience left me badly shaken and resentful.  I started that summer excited to have a baby and instead I got cancer.  The oncologist convinced me to put off our plans for another child for a few months until we had a chance to make sure that none of my other moles were going to “act up”.  I had to have 2 more moles removed from my back a month after my surgery.  One of those came back normal, but the other came back showing moderate abnormalities.  I just recently had another moderately abnormal mole removed and we’re watching 2 more.

Monitoring my moles is something I will have to do for the rest of my life, but I’m in a much better place physically and mentally at this point in my life and no longer feel ashamed and alone.

Until recently, I didn’t even know that organizations like the Melanoma Foundation of New England existed.  I have decided to volunteer with the Foundation to try and help those dealing with melanoma feel less alone.  I am also enthusiastic about using my scar for a positive purpose instead of hiding it.  I didn’t come close to dying, but I am permanently disfigured in a very obvious way that no one would wish upon themselves.  I hope that by sharing my story, I can help people make better decisions for their skin, and ultimately their quality of life.

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