November 29, 2012

My “Herstory” of Melanoma. ~ Timna Understein

Tracing the Past to Comprehend the Present

I have been asked by many people about my melanoma story. It is a disease that changed me from the moment I got the call with my first diagnosis.

Here it is, in brief, with pictures.

I was born with fair skin.

I grew up with hippie parents in the late ’60s and early ’70s. We lived in both New Mexico and California, spending a lot of time outside, dressed in minimal clothing.

I spent time with my mom in Pacific Palisades, my dad in Venice, and my grandmother (Nonnie) in Marina Del Ray…on the beach.

Sunscreen was not common then, at least not that I knew of. It was all about just being outside, in nature.

I spent 20+ years of sun loving, laying out, skin burning, beach going, roof-top pool visiting, and much more. 

Fast Forward:

At age 38, I was sitting on my bed, studying the bottom of my right foot. (Yes, I can see the bottom of my feet. Maybe it’s the yoga, but really I think it’s just my body, because below you will see me, at age four, eating my foot.)

While inspecting my right foot, I saw a tiny black speck. I actually thought it was a baby tick, and with my fabulous surgical skills, I proceeded to remove the “tick” with a cuticle clipper—gross, I know. The “tick” was out and life went on- until a few weeks later while catching another good look at my foot, I noticed the black speck was back.

Somewhere in the back of my head I remembered hearing the words, “If you have a freckle on the bottom of your foot, it is not a good thing.” I knew I needed to get to my dermatologist ASAP.

I got an appointment as soon as I could, and saw a P.A., who removed the dot and told me to have a good weekend.

Over a week later, a nurse called me. She started talking to me about melanoma, my oncologist ( I didn’t have an oncologist), my appointment for blood work and chest x-rays at UNC, surgery, cancer center. I left my body at those words. When I came back, I told the nurse she needed to stop talking because I was not hearing her, and that I needed to get a pen and paper to write all of this down. This was not real! It was just skin! Why x-rays and surgery and new doctors, etc.? I mean, it was just about skin, right?

It was then that I quickly became an expert on all things melanoma. I knew that when my oncologist loudly stated to me, “This is serious!” that my life was changing fast and forever.

I had dermatology visits every three months, with multiple biopsies, most of which came back severely atypical and needing further excision. I experienced anxiety, fear, post traumatic stress and obsession with checking my moles all day long. It took three months for the hole in my foot to close after the wide excision, and for the incision in my groin to heal after the lymph node biopsy. More fear, more terror, and, and, and…

And practicing safe sun in all ways.

Three years later (no, I didn’t reach the five year mark. I was so bummed!), I had my second melanoma. This one was on my right forearm, found at one of my regularly scheduled dermatology visits. Back to fear, back to crazy, back to wide excisions.

Then, a few months ago, I started seeing flashes of light in my left eye. So, I decided to study the sh*t out of my eye ball, something I had never done in the past (surprising!). And sure enough, I saw the tiniest dark fleck on the white on my eye, and I sunk into melanoma fear, knowing that tomorrow I would be in my eye doctor’s office no matter how booked and busy she was.

My eye doctor told me that what I had found were just a few pigmented cells. Well, after you have had melanoma, the words pigmented cells don’t jive well…no matter how few there are. She told me it was nothing, but that if I wanted to see an eye tumor specialist because I was so “anxious,” she would make the call. Of course I wanted her to make the call!!!

After weeks of waiting to get in with this eye tumor guy, and after a five (yes, five) hour appointment that included dilation, pictures, exams, different residents, I finally got to see the specialist, who told me this: “The reason you came in here today is actually fine, but right next to it is something called Primary Acquired Melanosis, and because of your history with melanoma, we are not going to wait and watch, we need to biopsy it and freeze around the area.”

Um…with shock having taken over, I blurted out, “Are you f*cking kidding me?” The thought of my eye ball being cut and frozen and….

It was all too much. I broke down, right there, with that nice eye tumor specialist and his nurse; I just sobbed.

So, this is how it goes once you have melanoma. It’s a life long deal. It’s never over.

And so, with these experiences and this new life, I hope to raise awareness and help to educate others about what might be something they can hear about rather than experience firsthand.

 “Out of difficulties grow miracles.” ~ Jean De La Bruyere

Timna Understein is a two-time melanoma warrior, founder of Respect the Rays, educator, yogi, mother, wife, blogger, avid reader…on a mission to spread the word about sun safety. As my Respect the Rays mission states, my goals are educating youth, elevating awareness, empowering minds.




Editor: Terri Tremblett

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