Respect The Rays: Melanoma Warrior On A Mission

by
Timna Understein as a child
HealthMedicine 7 Comments

My Herstory of Melanoma
By Timna Understein

I was born a baby with fair skin.

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

I spent my 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 a thing then… at lease that I knew of. It was all about just being outside, in nature.

Fast forward (but NOT to forget the 20+ years of sun loving, laying out, skin burning, beach going, roof-top pool visiting, and much more)…

In 2008, at 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 4, eating my foot.

Timna impressively "eating" her foot

So, yeah… I was inspecting my right foot and 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. It was done. The “tick” was out and life went on until a few weeks later, while catching another good look at my foot, I noticed this 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.” And I knew I needed to get to my dermatologist ASAP.

I got in as soon as I could, seeing a PA (Physician’s Assistant), who removed the dot and told me to have a good weekend.

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

Over a week later, a nurse called me. She starts talking to me… about melanoma… my oncologist (I DON’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. And 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 is NOT REAL! It’s JUST SKIN! Why x-rays and surgery and new doctors, etc.?????????? I mean, it is 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.

Fast forward (but NOT to forget the dermatology visits every 3 months with multiple biopsies, most of which coming back severely atypical and needing further excision, the anxiety, fear, post traumatic stress, obsession with checking my moles all day long, 3 months for the hole in my foot to close after the wide excision, and the incision in my groin to heal after the lymph node biopsy, and more fear, and more terror, and, and, and…………… oh, and practicing safe sun in all ways).

Three years later (no, I didn’t reach the 5 year mark. so bummed!), I have my second melanoma. This one is on my right forearm, found in 2011 at one of my regularly scheduled dermatology visits. Back to fear, back to crazy, back to wide excisions.

And then, just a few months ago, I started seeing flashes of light in my left eye. So, I decide to study the shit out of my eye ball, something I had never done in the past (surprising!). And sure enough, I see THE TINIEST dark fleck on the white on my eye… and I sink into melanoma fear, knowing that the next day I will be in my eye doctor’s office no matter how booked and busy she is.

Timna's EyeMy eye doctor tells 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 tells me it’s nothing, but that if I want to see an eye tumor specialist because I’m so “anxious”, she would make the call. OF COURSE I WANT 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 of dilation, pictures, exams, different residents, I finally get to see THE specialist, who tells 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 FUCKING KIDDING ME?” The thought of my eye ball being cut and frozen and………… It’s all just too much. I break. I break down… right there, with this nice eye tumor specialist and his nurse, I just sob.

So, this is how it goes once you have melanoma. It’s a LIFE LONG deal. It’s NEVER OVER.


RESPECT THE RAYS

Timna with her daughterWith her Primary Acquired Melanosis of the left eye diagnosis being made only a few months ago, we asked Timna how she is feeling today. She shared, “Today, well… I live with this new life. I see my dermatologist every 2 months, my oncologist every 6 months, and my eye tumor specialist every 6 months. In between all that, I try and live in the moment (SO HARD!!!) and enjoy life: my family, travel, educating others, etc.” Talk about brave, honest and inspiring… she is truly a Woman You Should Know.

Through her own experiences, and her new reality, Timna hopes to raise awareness of melanoma and help educate others, especially young people, about what “might just be something they can hear about rather than experience firsthand”.

She kicked-off her “Melanoma REAL TALK” awareness movement in May 2012 with a Respect the Rays facebook page. That quickly expanded into an insightful blog, under the same name, which Timna launched this past September.

As she explains, “When I first created Respect the Rays on Facebook, it was simply to reach teens and talk REAL about sun safety, the dangers of tanning, and melanoma. My mission was to educate youth, elevate awareness, and empower minds. I actually had no idea I would be blogging. But what has come of this is so much more than I could have ever imagined! Respect the Rays is part of a larger melanoma community, and we are all trying to spread awareness!”


MELANOMA BY THE NUMBERS

We think it’s incredibly important to talk about sun safety and melanoma more often and not just in the designated “awareness” month (May), as skin cancer does not discriminate based on time of year. According to the Skin Cancer Foundation, an estimated 76,250 new cases of invasive melanoma (44,250 in men and 32,000 in women) will be diagnosed in the US in 2012, with 9,180 (6,060 men and 3,120 women) estimated to result in death.

Respect The Rays logoSo Women You Should Know would like to thank Timna for sharing her very personal and honest story with us.

One potentially life saving statistic we learned from her Respect the Rays blog is that “regular total body skin exams by doctors can lower melanoma deaths by more than 50 percent”. [Source: SCREEN (Skin Cancer Research to Provide Evidence for Effectiveness of Screening) skin screening study with 360,288 subjects as published in the Journal of the American Academy of Dermatology]

With those kinds of odds, we’ll ask the same question that Timna poses… WHY NOT DO IT?

  • JA

    Scary, scary, scary stuff. Really brave of her to share her story to help other people. Wishing her much continued good health.

    • Respect the Rays

      Thank you, JA. It is very real and very scary. Help spread the word.

  • Timna – You are such an inspiration. Keep spreading the gospel, sister. Moms are so good about protecting their kids’ skin, and often forget to protect their own. Our kids need us to be in top top shape – and to be around – so we all need to treat our own skin with the same love and care we have for our kids’. MelaNO-MORE!! xo, Stacy

    • Respect the Rays

      Stacy! Yes, so true! Can’t wait to talk more about this…in Miami!!! See you soon.

  • This is a powerful story and it gets over the message very powerfully: stay safe in the sun! We set up our Charity Myfanwy Townsend Melanoma Research Fund http://www.melanoma-fund.co.uk after my wife Myfanwy died from melanoma on October 20th 1999, and we will be publicising this story immediately on our Twitter and Facebook pages: we became aware of it through Bob Boulton, who posted it on Matt’s Fund, in memory of his son Matt who also died from melanoma
    Thank you
    Harry Townsend

    • Respect the Rays

      Hello Henry! Thank you for your words. I will go check out your org and page right now. Keep spreading the word!

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