Mary’s personal story
My story began in February 2009 (well, thinking about it, it really began back in my childhood with all the sunburns I acquired as well as the tanning I became addicted to as a teenager, and then the tanning bed overuse that occurred from the age of 28-38). I grew up with two older sisters (10 and 11 years older than myself) who often “laid out” on the roof of our garage with those lovely foil blankets and baby oil, so I began my tanning addiction. We didn't have sunscreen, but we had coconut tanning lotion SPF 4!
Every summer I got my base “burn” and remained tan the rest of the summer. Becoming a teacher didn't help either, because I have my summers off so my tanning fetish continued after college. I was then introduced to tanning beds from a friend when I was 28. She was tan all year round (I live in Wisconsin, not naturally possible) so I inquired about how she kept her golden glow all year round.
Needless to say I became a fan of the “fake and bake" and continued that bad habit from ages 28-38 during the winter months! OMG can you say way overexposed? Ultimately in November 2008 I had this funny looking “growth” on my shin I thought a very small mole once inhabited. Of course I ignored it until my sister (a nurse) asked how I got the “blister” on my shin.
Fast forward to January 2009 and my sister wondered if the “blister” had healed yet. I said no and it looks bigger and has even bled. Warning signs everywhere but I ignored them because I really never thought melanoma or skin cancer were a possibility.
So I managed to get into my family doctor in early February and she removed it without any concern. She even said, “Doesn't look like skin cancer.” So I proceeded with living until a week later I was called by my doctor’s nurse who asked if I could come in to speak with the doctor. “Well, that can’t be a good sign,” I said.
“It’s best if the doctor spoke to you personally.” Gulp.
Longest day of my life waiting to see her. I received the news on February 11, 2009. Stage 2B ulcerated…lots of technical jargon I didn't understand. I had the WLE, six lymph nodes in right groin removed and four weeks of high dose interferon. I tried the low dose but due to my history of depression I became suicidal and had to stop after just three weeks. Then June 2009 (about three weeks after I stopped the injections) another spot, that actually presented as an irregular shaped mole, near my original melanoma appeared.
More melanoma—so I needed another surgery with a skin graft from my stomach to cover the gaping hole left behind on my shin. My original oncologist was not a melanoma specialist (big mistake).
When I asked him what my next step was, he said, “Nothing, just watch and wait.” I did not like that answer so I found a specialist through the help of my insurance company. He suggested I try Leukine for a year (which now studies show has no real benefits for overall survival). So for 14 days each month from Dec 2009-Dec 2010 I injected myself wherever on my body I could find fat and not a bruise from a prior injection. It was very doable compared to the interferon.
The beast stayed away from 2010-2012. In April 2012 a routine PET scan revealed I had two spots in my right leg so surgery was scheduled for May 17th. I also took part in a clinical trial for three months during the summer. It was rough, but nothing compared to the whole month of interferon.
Just when I return to a life of living a PET scan in February 2013 revealed another two lesions so I had a fourth surgery and a consult with a Chicago doctor about Isolated Limb Perfusion. It was determined that my tumor burden was too low (so glad I'm not an overachiever in that department!) so watch and wait was my only option.
I had a PET scan denied October 2013 because two prior scans were clear and I was asymptomatic. December I feel a lump on my ankle and I call my oncologist who gets me in quickly. He feels said lump and orders dermatologist to biopsy it.
Upon her examination she feels a second bump and I end up leaving with two more punch biopsies to add to my numerous divots on my body. In the meantime I wait for a January 10th PET scan and I feel a third bump. I really don’t know what is worse, knowing you have tumors within your body but you can’t see or feel them, or actually being able to feel the beast on the surface of your skin. Both equally frightening.
So my fifth surgery in five years occurred February 11th, and of course it was all positive for melanoma. One site clear margins were not obtained so I am likely to have sixth surgery in near future once I heal. I continue to deal with lymphedema and the fear of more recurrences. Melanoma has become a part of me. Definitely a part I did not willingly choose.
There has not been a day that goes by that I don’t think of this beast. I used to cry at least once every day when I’d think about how I was going to die such a terrible death. I don’t cry every day anymore (but on occasion I do!). However, I go to sleep at night with it on my mind and I awake with it on my mind. I feel as if I am walking around with a ticking time bomb.Thank God I still feel healthy enough to teach because that is when I get the most peace.
I don’t think about every ache and pain (there are a lot of them, especially the swelling in my leg). I have suffered emotionally, physically, and financially due to this insidious disease. My son, who was 16 at the time of my initial diagnosis, had one request of me when I was going through treatment, “Keep fighting.” That still resonates inside me as I read about the journeys of so many other melanoma warriors who are not in a good place right now. I don’t know what my future holds but I know who holds my future, and I will keep fighting.
I thank God for the support I have found in an amazing online community as well as for the love and support of my family and friends. No one can beat the beast alone.