I come from a family of pale, freckle-skinned people who adore the outdoors and spending time in the sunshine. I also grew up at the beach, part of a generation of sun worshippers who spent summers covered in baby oil, cocoa butter and any number of piña colada scented tanning oils, in an attempt to get as dark as my olive skinned friends; comparing tan lines daily. The only sunscreen available was zinc oxide, which came in a tube and went on thick and white, applied only to my nose, and only when the bridge of my nose was literally scabbed over from non-stop sunburn all summer.
Fast forward a couple decades of leaving my sun-worshipping youth behind, working indoors and not getting much sun later…passing a mirror one day, I noticed a new mole on my back. I had had two moles there for ages and suddenly there was a third one, same size and color – dark brown, about the size of a pencil eraser. A voice in my head whispered, “you really need to get that checked out.”
I had just changed insurance and hadn’t picked a primary care doctor and among other excuses, it took me about six months before I finally went to a doctor, and I only went then because that voice in my head was persistent. Get that new mole checked out. You really need to. Seriously. Get it checked out.
I went to my new dermatologist and he was quite nonchalant about it. He thought it looked fine, nothing to worry about. But that voice in my head got really loud while I was sitting in his office and I insisted he at least take it off, along with the other two moles, and do a biopsy. Reluctantly, like he was doing me a big favor, he agreed.
About 48 hours later I received a call that the one had come back positive with melanoma and I was being referred to an oncologist immediately. There was no time to waste. Like most people, regardless of the oncologist referral, I didn’t think much of it. Skin cancer just meant they’d maybe cut some more off, give me a lecture about wearing sunscreen and send me on my way…right? Well, I was close. I got the lecture and the surgery (from pencil size to three inches in diameter to make sure all cancerous cells were removed) and was told I was lucky that it hadn’t gone any deeper. They got it all and didn’t feel it was necessary for any further tests or treatment. I had a 99% chance it would never return. Just remember to be diligent with the sunscreen.
As my scar faded and a new job provided yet another new insurance plan, 8 months later I woke up with a swollen left armpit on my birthday weekend in December 2007. I was recovering from a flu bug and figured my lymph gland was just swollen from that. It went away the next day, but returned over New Year’s weekend and that voice in my head hollered, “get to the doctor as soon as the weekend is over!” With another new primary care doc to deal with, again, this one wasn’t too concerned about it. I held my steady ground in his office until he agreed to refer me to someone who would show a bit more concern. This ended up being a surgeon, who just happened to be in the same building and just happened to have a last minute cancellation and could take me right then. The surgeon didn’t seem too concerned either. But as I was leaving his office, my inner voice reminded me about the melanoma that had been removed from my back and I went back into his office and asked if he thought the two could be related. Those were the magic words. I was on the fast track to PET/CT scans, ultrasounds and surgery. While no one had come out and said I had cancer yet, the day before my surgery I got the most surreal phone call of my life, “We have good news and bad news. The bad news is we definitely need to remove most of your lymph nodes in your left auxiliary (armpit), but the good news is, it hasn’t spread to your brain or liver!” WHAT?!? “Yes,” he went on, “those are the two most common places, along with the lungs that melanoma will metastasize to.”
Post surgery I was told I had cancer in 3 of the 10 lymph nodes they had removed and I had 6 weeks to research treatments and decide which one I believed in the most since, “we really don’t know how to successfully treat melanoma yet, but there are some promising clinical trials.”
Chemo and radiation were not an option because I no longer had an actual tumor to treat or target. Melanoma, I was told, is like a dandelion in your yard. It spreads it seeds throughout your body. Some may take root in another organ and or they may not. But that’s what makes it so deadly. So after seeing a melanoma specialist who offered no more than xerox copies of news letters on the clinical trials and the less-than-comforting news that with clinical trials you don’t know if you’re getting the drug or the placebo, I opted for interferon treatments, which were starting to show hopeful results. I was to have daily intravenous treatments at the hospital for 4 weeks, then self-administer daily injections of a milder dose for an additional 11 months. My oncologist told me that there really was no proof that the additional 11 months had any added value and that I would be so sick from the drug that it was up to me if I wanted to do that. He seemed to feel that the month of strong treatments would be enough. I decided it would be.
In order to make the most of the treatments, I had two things I needed to do before I started. One was to get a tattoo on my arm of positive words that translated into my meditational prayer during treatment and the other was to throw a party and celebrate life.
I told everyone I invited to bring the best energy they could to share with me, but if they were not in a good mood or sick, please don’t come. I wanted to be surrounded by only good, healing energy. And I was! Word got out and over 100 friends, family and acquaintances came. We had a huge prayer circle out in the front yard, drawing from every faith we could think of, lit candles, burnt sage, chanted, sang and laughed. I come from a musical circle of friends and they all brought instruments. We sang, we danced, we celebrated life, living and love late into the night. It was amazing. I choke up now, remembering that day, and still feel the love course though my veins.
I decided to accept my treatments as a gift of life, so I dressed up, put on make-up and plastered a smile on my face every single day on that longest month of my life. Interferon changes everything. Every single sense is altered. My skin felt scaley to my touch (it wasn’t). Nothing tasted normal (except candy – I cleaned out the cancer center’s candy jars of every Worthers I could get my hands on). I had a screeching buzz in my head. I was exhausted. I hurt everywhere. And I only have one arm that can accept needles now, and those veins got wise quickly and learned to roll and shrink, making getting the daily IV in me a painful, bruising chore that I swear the nurses flipped coins on, loser having to insert the port. I got moon-faced from the steroids and the weekends were spent feeling withdrawals and anxiety.
I kept a blog on MySpace during that time, keeping everyone up to date on what I was going through and the love continued to flow through everyone’s comments, notes of encouragement and prayers.
It took about 7 months after the interferon before I finally felt 100% like myself again. I don’t think I could have handled the additional 11 months of self-injections. Since that time, I was having yearly PET/CT scans until this last year when insurance denied covering it (that’s a whole ‘nuther frustrating story in itself) and I see my dermatologist every 3 months for a skin check. It’s rare that there isn’t something that needs to be biopsied and I’ve had two that have come back as pre-cancerous, requiring a second surgery and stitches to make sure it’s all clear. I’m covered in divots, but each represents a tale of survival to me.
I learned several lessons from this experience:
•Believe in yourself and you can do anything.
•Never take a moment of life for granted.
•Love and positivity both hold a ton of healing power.
•If you’re not normally prone to hypochondria, listen to that voice if it tells you to get to a doctor ASAP
•Melanoma runs in families, but is treatable (5 of us cousins have had it. One lost his battle, but that was due to his own reluctance to face it and fight).
•You must be your own advocate in health care. If your body is telling you something and your doctor doesn’t seem to care, get another opinion or make your voice be heard.
•Melanoma is not “just a little skin cancer” that you can have removed and never worry about again. It can kill you.
•Melanoma holds no prejudice to skin color – Bob Marley died from it.
It’s been over seven years since the first mole was removed from my back; 6 ½ since my surgery and treatments. I’m lucky to be retired now (at this “young” age – ha) and I live at the beach once again, spending much of my time playing tennis, walking along the shore and boating; slathered in sunscreen, wearing a hat, and praying I stay healthy. Life is too short for me to hide away, afraid of the sun and avoiding the activities I love, but I have to respect it and myself or pay the price. Melanoma is a war I will never win completely, but if I can keep the enemy at bay, I consider myself a successful warrior.