Happy Anniversary: Life after Melanoma

Five years was the magic number: 1825 days. When the time was first given to me, it seemed like a (tentative) lifetime away. But that day has come, and–more than ever–I am still here.

When I was first diagnosed with skin cancer, I didn’t quite understand what it meant. “Is it serious?” I asked the resident who called me personally a day after I’d gone in for a consult on a suspect spot on my scalp which bled and refused to heal. “We always take melanoma seriously,” he replied solemnly. He gave me a web address and said, “you may want to look at this website to learn more about it.” But nothing was really processing at that moment. I was standing in the mudroom my partner and I had just built so my six year olds could dump their muddy shoes and bookbags there instead of all over the house. I hung my coat and Googled “melanoma.”

Melanoma is the most dangerous type of skin cancer. Melanoma constitutes about 4% of all skin cancers. However, it accounts for more than 80% of skin cancer-related deaths.

I looked at the photos and read the data on survival rates. And then I felt the kind of fear that wells up from deep within your belly and makes you lightheaded and breathless. All I could think about was my daughters. I didn’t cry (that would come later). Instead, I pulled myself together. I told my partner. I told my parents. I told my boss. I did not tell my daughters. I made the appointments I’d been told to make right away.

I first discovered my melanoma three months or so earlier. I was blow-drying the thick, unruly, wavy hair I’d hated since my teen years and in the effort to get it straight I brushed hard over a spot on top of my head. The spot bled, hurt and felt like a scabbed-over mosquito bite I had scratched too much. I figured it would heal.

But the following week, it was still there and it bled again. I called my girls over and asked them to look at it and tell me what it was, and they said, “eww, it looks gross.” I parted my hair and took a photo of the top of my head with my phone and finally got a look myself. It was indeed gross: scabby, pinkish-colored, oddly-shaped, and about the size of a pencil eraser. Because I am fair, I have always been on the lookout for odd-looking moles or freckles, but this one didn’t look like what skin cancer is supposed to look like (dark, uneven, etc). When I showed it to my primary care practitioner, she said, “it doesn’t look like anything, but you are welcome to go to a dermatologist.” This is where I was reminded of just how important trusting your instinct can be: something told me I needed to go right away, and I did.

The appointment where I showed the “bump” to the dermatology resident and he said, “that needs to come out right away” lasted perhaps 5 minutes. And when he (instead of a nurse) called me the next day, I knew the news would not be good, but to be honest, I expected him to say something like, “your lesion was cancerous, but we got it out and now you’re all set.” My understanding of skin cancer was much like anyone else’s: an inconvenient mole you take out and forget about. I had no idea that a 3-mm spot can cause all sorts of bad trouble.

Once my skin cancer had been identified as melanoma, I had to submit to a variety of tests to determine whether the cancer had spread. Several vials of blood were drawn and thankfully came back negative. Over a period of two hours, I lay still in a scanner while radioactive tracer material was injected at the site of my lesion to help identify the sentinel lymph node (the first lymph node into which a tumor drains) so surgeons could remove it and test for signs of cancer spreading into the lymphatic system.

I met the surgeon who would remove the melanoma from my scalp, Ian Lyttle. The surgery, he said, would require him to remove a 2-inch margin around the original site of my lesion which translated to an area with the circumference of an orange. Because the scalp is not as elastic as the rest of skin, there was a strong possibility that he would not be able to close the wound and he would need to create a graft using skin from my thigh.

As he explained the procedure, I could tell he was being gentle – he was telling me he was about to take a huge section of my head and hair, perhaps disfigure me, and attempt to pull me back together. “Take as much as you need to,” I said, “be aggressive. I have two young girls. I have to be around to raise them, even if it involves a wig, ha ha.” I was being rational and brave, yes – but I was also doing what I had done so many times before in life: giving the right answers, trying to impress people with how put-together I was, distracting myself by making a joke. On the day of the surgery, I still at it, trying to entertain the nurses and anesthesiologist as they put me under. Seven hours later I woke up viciously nauseated, bandaged up like Frankenstein, some scalp, two lymph nodes and a couple of moles lighter, and hopeful that the cancer was out of my body.

The lab results came back and I was told that because my lesion had grown into the scalp but there was no sign of cancerous cells in my lymph nodes, my official diagnosis was melanoma, stage IIB. The dermatologist asked me whether I wanted to know my chance of survival or preferred not to. I definitely did, so I got my number: “75% of patients survive 5 years. After five years, if melanoma has not returned, your chances of survival increase markedly. After five years, you will be considered in remission.”

Over the next days, the dressings came off and revealed ear-to-ear scars almost to my hairline. My scalp seemed to be stretched to its absolute limit, the blue surgical thread digging into it like the stitches in the leather interior of a European car. My head was raw and red and messy, with bits of hair interspersed within shaved areas. Thankfully, no graft had been needed – the surgeon had managed to close it and expected it to heal on its own. And heal it did. It took a three-month headache and clumps of hair falling out until the wound closed and left behind an eerily-smooth, moon-like crater with little feeling and no hair. My first grey hairs appeared. I had to buy smaller hair elastics to adjust for my thinner ponytail. And in the meantime, I cooked and took my girls to school and worked, and life went on.

One day, a few months after the surgery, I finally let me see myself in the mirror. I looked at the scar, a wide-open space on my head. I touched it and I knew I would never see hair there again. I thought about my girls as newborns – their perfect smooth heads, their miraculous little bodies with not one scar. And the thought that I had once been whole and safe in my mother’s arms and that I was no more – but I was still here – struck me like a thunderbolt. And I finally cried. I allowed myself be sad and shallow and mourn the fact that I would never be able to wear my hair parted to the left, or pulled back like I used to. I allowed myself to feel the fear and sadness that came with knowing my chance of dying from this cancer was still 25%. I admitted I was afraid – I had been afraid since the day I found this thing, and this did not make me weak or selfish. And then everything changed.

I stopped being afraid of failing, disappointing people, and making mistakes. I stopped living as if I could do things later and tomorrow, and started doing them now. I looked at every day, even the most frustrating ones, as good because I got to live them. And I also realized that the fact that I was able to feel sadness over something as presumably shallow as having a big scar meant my first concern was no longer that I would die and leave my daughters behind. I knew that regardless of how things went from here onward – whether I lived 5 years or 50 more – I would be ok. And I knew even though my head would never be whole again, I had been handed a huge gift in exchange.

The counter started on the day I was told “five years.” As the dermatology visits went from every three months to every six months to once per year, my life became more about life and less about cancer, and the five year counter started to tick by faster.

We’re all going to die someday – there is no escaping that. But most of us live by ignoring this fact, aided by the unknown future. When you are given a cancer diagnosis, you are not only reminded that you will die, but that your death may be happening in the very near future, and this is when your life comes into a beautiful and clear focus. All the noise quiets down and you really understand what truly matters to you.

At one point, you may have hypothetically asked yourself, “if I only had a limited amount of time to live, what would I want to be doing with my life?” But when you receive a cancer diagnosis, the question is no longer hypothetical. When I asked myself that question five years ago, my answer was, “exactly what I am doing now.” At the time, I was working on becoming the mother I wanted to be and sharing my life with the man I loved madly (who is now my husband). My cancer diagnosis reaffirmed that my time here was limited, and that I should pursue the things I was passionate about because I didn’t just want to live – I wanted to drink every bit of life in. Here’s to the last five years, the next five, and hopefully many more five after that: may I never forget that every day we draw breath is a good day.

The story continues here.

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Special thanks to Kat Foley Photo for taking the photographs that accompany this piece. I am very grateful for her warm heart and huge talent. katfoleyphoto.com

For information about melanoma, please visit The Melanoma Research Foundation, www.melanoma.org

And please…wear your sunscreen, avoid tanning beds and check your skin regularly. For you and for those who love you. <3

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