Truth Tale #8: Farewell, Respect the Rays

13 years ago I had my first cancer diagnosis. Melanoma. 10 years ago I had my second cancer diagnosis. Melanoma. And 10 years ago I started Respect the Rays, in response to having had a second melanoma. It started with the idea that educating teens about sun safety was something missing, and needed to be addressed. However, soon after the idea, came much, much more. Respect the Rays blossomed into something I could have never imagined. It was incredibly rewarding to feel a part of educating the world about the disease of melanoma and how to practice sun safety. I loved everything about it….from creating the logo, to meeting incredible people all over, forming partnerships, writing, doing in school presentations, and so much more. It really filled that “into action” thing that seems to help others and oneself, when cancer makes you feel like you have no control over your life. A decade of Respect the Rays.

Recently, I’ve decided to close down all things Respect the Rays. I don’t have the bandwidth at this age and stage. Life has given me other things to focus on, like talking about mental health and spreading the word about things like Narcan, the disease of addiction….that kind of stuff. Other diseases.

But here is the first thing I wrote for Respect the Rays, way back when, after a small handful of followers had reached out to me about my melanoma story….

My Herstory of Melanoma: A Picture Story in Brief

I have been asked by many people about my story as it relates to melanoma, a disease that has changed me from the moment I got the call with my first diagnosis.  

Here it is, in brief, with pictures to help…

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.

(I know, weird that hippies let their kids play with toy guns…but they did)

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)……

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…..

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, who removed the dot and told me to have a good weekend.

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 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 at one of my regularly scheduled dermatology visits.  Back to fear, back to crazy, back to wide excisions.

And then, 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 tomorrow I will be in my eye doctor’s office no matter how booked and busy she is.  

My 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.  

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

“Out of difficulties grow miracles.”

~Jean De La Bruyere

So there it is. My story as it relates to melanoma. A long journey. A lifelong journey. But a farewell to Respect the Rays.