Monday, September 24, 2012

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 of 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



Pacific Palisades

35 comments:

  1. You made me very sad, scared and I just checked the bottom of my feet. I am so sorry you have to go through this. If we only knew then what we do now life would be very different. XO

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    1. Good that we are educated now! Now go make your dermatology visit! And tell Jess to also! I can't seem to get her in, even with my story.
      XOXOXOXO

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  2. Oh my God Timni, I'm so sorry. I get my stiches out tomorrow along with my diagnosis. My arm looks just like yours, but mine is on top of my forearm. I'm thinking the Bride of Frankenstein might be a good Halloween costume this year, but I digress. Thank you so much for sharing your experiences. I'm crying right now, but I'm truly grateful to know that someone has had a similar experience. A lot of friends and family say, "...but it's just skin cancer. They'll cut it out and you'll be fine." They really don't get it, but you do. Thanks again and prayers to you that this is it!

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    1. Hello Janell! I'm glad you feel connected, and know that we all understand...those that have gone through this. It is so important to NOT feel alone. I am praying for quick stitch removal and for GREAT news! Please keep me posted!!!!!!!! Thank you for sharing your response here.

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  3. Thank you for sharing - I will never forget those days after the cuticle cutter - I am so proud of all you are doing to let others know.....you are my hero!! xoxo

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    1. If this is the Amy I think it is...I LOVE YOU! It must be, because who the hell else knows about the cuticle cutter! LOL! LOOOOOOOOOVE YOU...and need to see your FACE, not your Facebook, SOON!!!!! XO

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  4. Thanks for sharing your story. The eye thing is really scary, I hope that heals well. Whenever I tell people the story of my melanoma and my ongoing battle with BCC and repeated surgeries, I always have people saying "I'm sorry" and it's never really what I want to hear. I want to hear people say "Congratulations" you made it, "keep up the fight", "you are so strong, so brave, I admire you", "thanks for educating me, I'll take what you shared with me and learn from it". I never want people's sympathy. I'm not trying to criticize other people's responses, just saying to you what I wish people would say to me. You are strong, you are brave and you have reason to keep on fighting. Life will always get better.

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    1. The eye IS scary, yes. It is healing...slowly. This too shall pass. I know, sometimes people say some strange stuff...but they just don't know what to say. I know I didn't really know what to say until I was touched by the disease. We live an learn. And yes, we are strong and brave!

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  5. Elegantly told, the message is there, my dear. Thank you for sharing, for talking me down from the ledge when Geno was under, and for just being you. Xo

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    1. Thank you, Donna! I am here. I'm so glad we "met" :) XOXO

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  6. These are very sad stories ladies. Our prayers are with you. I'm 19 years out with melanoma but my right eye is "funny" after reading your story I will go and get it checked. My husband's son passed away from the big M 20 years ago this October. He was 37. We hold a walkathon every year in San Diego to raise money to hopefully beat the disease. check us out on Annual UCSD Gorder Walk for Melanoma Awareness. There is a lot of support from this group. We are with you.

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    1. Yes, go get your eye checked out right away! And hearing about 19 years out is very inspiring! I just liked your Facebook page. Keep up the great work!!

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  7. Miss Timna!
    Hey there. Just sent a link to your site out to many folks I love and asked those people to share it too. You are doing a brave and wonderful service to share your experience with the world.
    I love you and your sweet mama. Hope our paths cross soon, dear one.
    Farley

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    1. Hi Farley!!! Thank you for spreading the word! If we all do something, we are bound to make a difference! I LOVE YOU!!!! XOXO

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  8. I am totally inspired and blown away by your courage and candor. Thinking of you with great love and respect.
    Danni

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  9. you are amazing, thank you for sharing and i hope for a speedy recovery for your eye, big love, kate xxx

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  11. I finally got around to reading your story, I was scared so I postponed it, it was right I am a mess now. Thinking of my Daughter, how much I miss her, how the Beast took her life after 167 days, how I miss her, how I miss her, how I miss her. but as a Mom to hear you say once you have Melanoma its a life long battle and some of the battles I have seen & heard of I can only be thankful for the 167 days and that she truly din't suffer. Truly, that is selfish but I know where she is, she is in Heaven where no more sorrow, no more pain, no more Chemo, no more freakin out finding more & more tumors, looking at her Daughter knowing she won't see her grow up! I miss her so much but so thankful her 31 yrs & 31 days were a dream come true for her. and her Mom didn't have to see her suffer in life!

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    1. Sue! I can not even begin to imagine what you and your daughter and family went through...and what you continue to go through. This disease is for sure a beast! It really is a life long reality; the fear is never gone. It's an up and down emotional and physical roller coaster. You have such amazing faith and gratitude. You are an inspiration!!!! Sending you love! XO

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  12. Thank you for sharing this story! I was a tanning bed idiot , stage 1b melanoma last may.. I have had 5 more incisions since that were all severe atypical I pay I am done with this rotten cancer! Thank you for posting and sharing your story!

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    1. Hello Chicky Beach Art! Thank you for reading and posting!! I know all about the severely atypical stuff....got scars all over my body from those. Just stay on top of it and be vigilant! And yes, this cancer is ROTTEN!
      Come join us on Facebook- https://www.facebook.com/pages/Respect-the-Rays/243223335784833

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  13. Timna! Can't wait to meet you and your family! Loved reading your story. I put some "scar" pictures on the "Scars of Melanoma" FB page. I'm at 6 years, stage IIb, so thankful. But you are right, it's never over. The pictures you made yesterday are just so freaking amazing!! I will be so proud to carry one!

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    1. Hello!!! I am thrilled to be meeting you! This is going to be incredible! So glad to hear you are SIX years out!!!! We all need to hear stories like that! See you SOOOOOOON!!!!!!!

      XOXO

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  14. Timna, thanks for your story. You KNOW I will be sharing it on Facebook :) You are so beautiful, inside and out. "I grew up with hipppe parents" - when I see your pictures, I always think 'Yimna is such a beautiful hippie' Ha! Love it! Love you!

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    1. Thank you, Jennifer!! LOL...so funny that you KNEW about my hippie upbringing. I LOVE YOU!

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  15. Your story is so much like mine!! I too grew up in So Cal... Laguna Beach, and spent loads of time in the sun with few clothes on...for hours and hours. As a teenager I added a few visits to the tanning booth in the winter to keep the tan. Melanoma almost killed me, I am a stage IV SURVIVOR. We need to share to let people know the dangers of the small dark spots, skin cancer is more than cancer of the skin that can be scraped off.

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    1. WOW, Steph! Stage IV survivor...you are one mighty warrior!!!! :) Yes, we must share to educate! What years were you out in SoCal sun?

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  16. I'm glad someone finally put their melanoma story into a language I can relate to. I get mighty pissed off about this whole business too. I've had three separate melanomas '91 - left shoulder, '93 - right upper arm and '09 - right ankle. I've also had three dsyplastic nevus which have had to have wider margins taken. Over the years I've had at least 40 biopsies. Every visit to my derm results in a few places being taken off and then the ensuing anxiety waiting for phone call about the results. Three months later, just as the old biopsy scars have started to fade somewhat, it's back to the derm for more.

    You're right, it's a life long deal. Every little ache and pain makes me wonder and worry if that melanoma monster is creeping and growing somewhere inside me. I try to not 'live' melanoma, but you just can't help it.

    The shit just never ends...

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    1. Kelli- Thank you for reading! And yes...I feel the same way..the SHIT NEVER ENDS! EVER! It's our life....

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  17. Thank you so much for sharing your story and especially your emotions surrounding your experiences. It is so reassuring to know that there are others out there who have been through it . The fear is the hardest part...wondering about every little spot and ache and wondering if my concerns are warranted or on the verge of paranoia. In any case, I know that my perspective on life has definitely been forever altered.

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    1. Hello Orange Blossom Brand! YES, forever we are changed! Thank you for reading and responding!

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  18. Wow. So scary. I'm sending this to my hubby whose sister has had melanoma and he still needs to be reminded to wear sunscreen. UGH. So sorry for all you've had to go through!

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