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

Tuesday, September 18, 2012

Do You Do It?



I recently asked the question "How often do you have your skin checked by a dermatologist?" in the form of a poll, offering four answers: every six months, once a year, every few years, and never.  I was surprised by the numbers....in a good way, and in a bad way.  Sounds strange?  Well, let's have a look at the distribution of my extremely unofficial "data".  


Looking at the graph, you can see the good news clearly- lots of folks are visiting their dermatologist on a regular basis!  The bad news is in the red- 31% of those who participated, have NEVER had their skin checked by a professional.  This percentage shows the need for more education about the importance of putting the dermatologist on your list of annual people to visit.  

The largest skin screening study ever done, provides compelling information.  SCREEN (Skin Cancer Research to Provide Evidence foe Effectiveness of Screening) published a study in the Journal of the American Academy of Dermatology, with 360,288 subjects.  The study concluded that regular total body skin exams by doctors can lower melanoma deaths by more than 50 percent.  

So, why not do it?  There seems to be a few common reasons why people do not get to the dermatologist.  First, FEAR.  If we fear something, we tend to avoid it.  I know all about this.  I did it with my teeth.  I avoided the dentist for 10 years....and sure enough, when I finally did return, I had 10 cavities.  Thus, a perfect example of how avoidance is self-sabotaging.  There is a sense of immediate relief by avoiding something we fear, but that relief is fleeting.  Facing the fear is the only way to lower our fear.  And the best way to do this, is practice, practice, practice!  Now, when I visit my dentist I am sure to book my next appointment before walking out the door.  Otherwise, I know the phone will get too heavy to pick up to make the appointment.  The more I do it, the easier it gets.  

The second common reason for not going to the dermatologist is TIME.  "I don't have time. There is nothing wrong."  I love this Spanish Proverb to address this: "A man too busy to take care of his health is like a mechanic too busy to take care of his tools."  It is hard to make time for things that don't feel urgent.  We are busy people, living busy lives.  But the truth is, if you go for a skin check on a regular basis, a full-body skin check may only take about 15 minutes.  That is not a lot of time in the grand scheme of things.  

Lastly, MONEY....I know, these visits add up, and many don't have health insurance to cover such visits.  Two things here- 1) If you do have health insurance, try this on for size...If you think the cost of an annual dermatology visit is expensive, the cost of cancer, surgeries, etc. is WAY more expensive!  2) If you do not have health insurance, there are FREE skin cancer screenings being done all over.   You just need to Google search "free skin cancer screening" and add your city.  Or visit The Skin Cancer Foundation's website for information on locations and dates of their screenings.  You can find that info here- http://www.skincancer.org/events/tour

In closing, the best way to protect the skin you are in and to stay safe, is to practice safe sun (avoid peek hours, use SFP 30+ mineral based broad spectrum sunscreen, wear hats and sun glasses, seek shade, wear UPF clothing) and have your skin check regularly by a dermatologist.  DO IT!  

"My philosophy is that not only are you responsible for your life, but doing the best as this moment puts you in the best place for the next moment."
~Oprah Winfrey


This is scarier.
This takes more time.
This is more expensive.


This is scarier.
This takes more time.
This is more expensive.


Invest in yourself!  YOU ARE WORTH IT!!!!!

Tuesday, September 4, 2012

My Brain in a Holding Pattern

Have you ever experienced what feels like the suspension of time?  I'm sure there are countless circumstances that could render this sensation.  For me, this comes every time I await pathology reports.  

I've been in this for a week now.  I feel myself turn into an airplane in a holding a pattern.  Truly. Get the visual going- I can feel myself turning stiff with fear, not wanting to say anything but the uttering of a groan (that's sort of airplane-ish). I can feel it come on, a couple of days after a surgery...and each day that I wait, I sense the building of doom from within.  


A holding pattern is the only way I can explain this with a visual twist.  Here is the evolution of this temporary transformation: It's me, the aircraft, flying through life, doing what I need to do, moving forward, taking care of myself (the surgery).  Then a short-lived sense of relief...ya know, from surviving the surgery.  With this comes bunches of gratitude, smiles, joy....for a day or two.  Then comes the announcement from air traffic control (which is really just my brain.  ugh.), telling me that at this time, I will need to go into a holding pattern, until otherwise notified (pathology results come).  And right there, the direction of moving forward gets bent...into a circular motion.  Circling.  


While swirling through this suspended state of being, lots of stuff arises in the mind.  It's an interesting place for thought.  It's where I revamp my bucket list, hang out in the Kubler-Ross model a little bit, with some bargaining with God.  It's where I vow to enjoy every moment if I am given more moments.  It's where I talk to myself about eating more healthfully, treating my body like a temple.  It's also where the doldrums set in and a tinge of listlessness may come.  


So, technically, while in a holding pattern, one awaits clearance to land.  In my brain, I'm waiting to hear if I will get clearance to make a smooth landing, or if I will just crash.  Circling and waiting.  


I know.  There are tools to employ during times like this.  And I do.  I pray, and breathe, and try to keep my daily routine going, but the mind, MY mind, does this.  And then the day comes.  The call comes from those in air traffic control (my surgeon), and I hear the words.  Today I heard the words "NO malignancy", which is my permission to land...safely.  


And down I come.  Back to earth; back to life.  The smile comes back, gratitude overflows, and with a renewed mind, I am back on the ground.  Glad to be back!


"Forever is composed of nows."

~Emily Dickinson 





Getting ready for eye surgery...at the party store.  Making it a family affair...all members wearing eye patches.








Coming down from the holding pattern!