Friday, March 29, 2013

Like The Very Hungry Caterpillar, But Not Really

The theme of endlessness has come up a lot for me lately, as it relates to melanoma.  There have been people close to me that have been diagnosed with second melanomas, others with horrible and mysterious side effects of their treatments, those with anxiety that has spiraled into obsession...the list goes on.  

I often think about how this disease is lifelong, and how its cunning nature has the ability to walk in my shadow, wherever I go.  But really, I want to convey to those who believe that this disease is "just a skin thing", that it really is not.  When I say this disease feels endless, I mean that on so many levels.

So, here's my attempt to show how this disease is not simply about skin, but rather a perplexing, boundless part of life that does not end.

A few days ago, my right, big toenail area started feeling weird...a pain/pressure of sorts.  I knew this sensation.  And immediately I was rocketed back to a week last year that went like this...

Ya know the book The Very Hungry Caterpillar by Eric Carle ?  Well, if you don't, you can watch below, as the story is read by the author:

Here is how my own Very Hungry Caterpillar week went...
FLASHBACK to last year:

On Monday, I was in yoga class, in down dog, and noticed what I thought was a piece of nail polish that had lifted off my big toe nail.  Unable to stop fixating on it, I stop my practice, and inspect.  It's not polish. It's my nail...half OFF my big toe.  In my mind, I go straight to melanoma....I know I've read that toenails that come off may mean melanoma.  Within hours, I'm in the dermatologist's office, seeing a physician's assistant.  Fear goes from zero (on the yoga mat before noticing this, all zen and yogi-ish) to 10+(in a medical facility, thinking I have another melanoma).  The PA goes and get some large, pliers-like tool, and cuts it off.  Yes, half my toes nail, from top to bottom is gone.  She examines the skin and says it looks healthy and that this is probably a result of an injury months prior.  Ok.  Exhale, and move on...with a missing toenail.

On Tuesday, I have a five hour eye appointment to address the pigmented cells found on my left eye (or, really, I should say...that I found).  This entails meeting with many different techs and residents for dilation, pictures, exams...before being seen by the eye tumor specialist I was there to see.  I spent 4 hours and 45 minutes being examined and told that everything looked good.  I remember feeling so relieved and full of hope, that I had made it through this with the "all ok".  And then, I was called back to see the eye tumor guy.  And that's where the 4 hours and 45 minutes of good news was erased in an instant.  I was told I have PAM (Primary Acquired Melanosis) and that I needed surgery to biopsy the area and freeze the surrounding cells.  

On Wednesday, I went to the North Carolina General Assembly to participate in a free skin cancer screening event, where we, as survivors, were asked to speak with our legislators about the need for strengthening indoor tanning laws.  It's also where I met the amazing people behind Black is the New Pink-Fight Melanoma and Melanoma Prayer Center... BEST part of the day...and week, for sure!  

On Thursday, I got some vaccinations for my up and coming travels out of the country.  Oh, and LOTS of time in my head (bad place), mulling over the PAM diagnosis.

On Friday, I had a follow up mammogram for calcifications found 6 months prior.  When the radiologist came into the room and spouted off the words, "There have been changes; we need to do a vacuum-assisted core biopsy."...I thought I was having auditory hallucinations from all of the stress.  I left there in tears, got on the phone to my surgical oncologist's office, and completely lost it when asked by the nurse on the phone, "Ok, so do you see Dr. ______ for melanoma or breast cancer?"  Through my sobs, I tried to explain that I thought I was just his melanoma patient, but now I might be seen for both!  [*Please note: There is a link between melanoma and breast cancer.] This day was a whirlwind of insanity, racing back and forth to the cancer center, seeing nurses, scheduling the biopsy, rushing all of it, because I was supposed to leave the country the next week.  

On Saturday, I did not eat through a bunch of yummy stuff, but rather bit off all of my nails and chewed my cuticles until they bled.  

On Sunday, I most definitely found myself in a cocoon, a fucked up cocoon of fear, what ifs, and panic.

On Monday, I had the breast biopsy.

On Tuesday, I waited...........all day...for results.  My angel that day was my outstanding, sensitive nurse practitioner, who called me throughout the day, giving me updates on what was going on in the pathology lab.  Her last call came late in the day, with her gleeful voice saying, "Have a great time in Costa Rica!"  The path report was good.  No breast cancer.  

I did not emerge from my cocoon a beautiful butterfly, but I did come out a toughened warrior.  

Photo by Robert Sturman

My point of all of this, is that melanoma is more than a simple cancer of the skin.  It's a horrible disease, that can spread to your liver, lungs, brain, can increase your chances of getting breast cancer, will require a life long commitment of vigilance, and so much more...including, when you feel a strange pain/pressure in your big toenail, you are thrown back to a week of fear-filled memories.  


"We live in a rainbow of chaos."
~Paul Cezanne

Thursday, March 21, 2013

When You Hear It a Second Time (the M word, that is)

The past few days have me thinking about the phone call I got from my dermatologist about a year and a half ago.  I was waiting for multiple biopsy results...days go know how it goes.  I'm with my son, on the way to the market, when my phone rings.  

On edge, filled with that extra bit of adrenaline, I see that it's my doctor calling.  I answer, "Hello?"...and she says, "Hi, it's Dr. _____, where are you?"  That question, from her lips to my ears, has the blood rushing to my face.  I feel my heart, and a prickly sensation on my scalp. I swallow, feeling a large lump in my throat, as I respond with, "I'm driving."  My thoughts start going, in this fraction of a second...I start to think she has to be calling me about a basal cell or a squamous cell carcinoma...when she says, "I need to talk to you when you are not driving."


I pull over.

I try to remain in my body.  And I say, "OK, I'm not driving anymore!  What is it?!"  

And then I hear the words I really never thought I'd hear again..."It's melanoma, but not as bad as your first one."

When I was diagnosed with melanoma on my foot, I learned all about the severity of this disease.  I knew (intellectually) that once you have a melanoma, your chances of having another is greater than someone who has never had melanoma.  I knew these statistics.  I knew these numbers.  I knew these facts. 
But I never thought I'd hear those words again!

This week, a fellow melanoma warrior, friend, educator, beautiful YOUNG woman, Chelsea, was diagnosed with her second melanoma.  She, at 24 years old, is another example of the horrible fact that, once you have a melanoma diagnosis, it is a lifelong deal.  

Chelsea, of Adventures with My Enemy Melanoma shares about her experience of receiving news of her second melanoma, in her blog post, The Latest Guest: Melanoma. I'm praying for you, Chelsea!

Of course the shock is there...and the fear, and the facing of one's own mortality...again.  But, for me, having melanoma a second time was the shove that got me thinking about speaking out.  It was the catalyst that got me thinking outside of myself.  It was my stepping stone to the creation of Respect the Rays.

So, yes it sucks receiving bad news, but if I am truly looking for the good in the bad, then I feel that Anne Frank said it best...

"Everyone has inside of him a piece of good news.  The good news is that you don't know how great you can be!  How much you can love! What you can accomplish!  And what your potential is!"

I love you, Chelsea!

Wednesday, March 13, 2013

Before I Knew...

Do you ever feel like a certain memory is retrieved all too often?  Like it's been seared on your hippocampus and will never fade away?  I have that.  I have that with a specific memory that was encoded in my brain right after my first melanoma diagnosis.

I know why it's been brought back to the surfaces of late.  It happens when the big sunscreen kiosks are assembled in the markets and drug stores.  It happens when spring is coming, when summer is here, when the wide variety of sun screens are laid out in public.

Right after getting the phone call about my first melanoma, there was a period of not knowing all things melanoma.  I knew this was serious, but I was still in shock and had not researched this disease to the end of the internet..........yet.  I knew I was terrified. I knew life was different than before this phone call.  I knew I was going in for surgery.  But, there was a lot I did not know.

The month was May.  It was hot;the humidity was upon us.  I was getting ready to go to Field Day with my daughter's kindergarten class.  I took a fresh canister of spray sunscreen out to the front steps, sat down on the top stair, and started spraying my feet.

I pushed that button down, watched the mist fall onto my feet, some drifting into the air.  I watched my feet become shiny and wet from the amount of sunscreen being applied.  And I couldn't stop.  I wouldn't stop.  I held my finger there and refused to release.  The thought going through my head while engaging in this strikingly out of the ordinary behavior was, "If I just keep spraying this sunscreen on my feet, this will all go away and I will be ok."  

I'm sure I knew intellectually that that was nonsensical thinking, but in that moment, with spray filling the air and tears streaming down my face, I felt the depths of desperation and needed to DO something.  

And so I sat there, spraying until there was no more spray to force out, knowing that this would not change the outcome, yet needing to feel I could take some form of action, that something could be done, that somehow this would make things better.

This was before I knew...
...that aerosol sunscreen sprays could be flammable.

...that there is a risk of inhaling this substance.

...that when given a melanoma diagnosis,  it is a lifelong deal.

...that this disease is such a beast.

...that my whole world would be permanently altered.

...that almost 6 years later, I would still have this memory retrieved every time I see sunscreen kiosks.

...that I would be able to turn something so scary into a positive thing!!!

So yes, each time this memory resurfaces, I catch myself saying, "What the fuck was I thinking."  But I know exactly what I was thinking....that I just wanted to be ok.  And today...I am ok.

What the Fuck Was I Thinking
By Jenny Owen Youngs

Do you have a surreal experience to speak of? Please share...

Saturday, March 2, 2013

The Classroom: A Magical Place

Once upon a time, when I was young, I was a teacher.  I loved it...really, I lived it, breathed it, took it on as more than a full time job...It was a passion.  Well, after being out of the classroom for EIGHTEEN years, I was the local high school, to speak with 3 classes of teens about melanoma and sun safety.

I'm not sure words can really capture what I felt while there with these amazing kids, but here is a sprinkling, that may give you a hint  of what I felt: awe-inspired, hopeful, invigorated, grateful, energized.  

I'm not going to lie...FEAR was there too.  Fear has a way of making sure it is not left out.  But really, this bully came in the form of anticipatory anxiety...pretty much for the entire week before.  I hate fear!  It's an energy sucker and some other things...that I will refrain from saying...BUT, there is a positive side to it (sometimes).  This anxiety is what propelled me into the practice, practice, practice mode...leading to lots of tweaking, modifying, rearranging, hopes of getting this thing to its best...for these teens.

Once I saw the faces of these kids, fear actually melted away and I was rocketed into teacher mode, and so excited to have the opportunity to DO THIS!  I mean, come on...just look at these faces....

In brief, this is how it went down:

I introduced myself.  I did a little "interactive" question type thing, to get them engaged ("Raise your hand if you brush your teeth everyday?"...Thank you David (my little brother) for that brilliant idea!). I asked them to be thinking throughout my presentation about the things that stand out as extremely important and possibly life saving (prompting).  Then came Dear 16 Year Old Me...OF COURSE!

I told them my story (using My Herstory of Melanoma).  I told of what my life is like now- the doctor appointments, the biopsies, the waiting (FEAR), the life long roller coaster ride.

I knew at that point they may be getting a little, "Ugh...she's old, I'm not...this shit is not going to happen to me...I'm YOUNG."...So, this is when I brought in the YOUNG faces of melanoma.  And of course, I brought Jillian with me.  And Steve .  Both of them live on by the impact they are making everyday!

There were lots of questions at this point, so we took time to explore their questions.  They were so engaged and curious, and wanting to KNOW.  For me, this is the most thrilling part of doing this- hearing from them!  They wanted to know about the healing of my foot, my eye...They wanted to know about moles they had on their bodies...They were internalizing this information...making it personal!  

It was at this point, I turned the focus from "here's what can and does happen" to "here's what YOU CAN DO!"....This slide (in the power point) was a list of 10 things you can do to protect yourself.  It was time to get them reengaged with the smart-board, so I asked for volunteers to read from this list of 10 things.  It's empowering to know there ARE things we CAN do to help keep us safe.

And then came REAL TALK.... knew that was coming!  I thought that after hearing about the 10 things, and the A, B, C, D, E rule, they would need their ears perked up...and that is what happened when I talked about melanoma developing in the vagina, on the penis, in the scrotum, in the butt.  YES, I really did say all that.  Why not?!  It's REAL!  It needs to be known!  

I included talk of Bob Marley, the fact that melanoma does not care what race you are...We talked tanning beds. And we talked of ways teens can creatively become involved in spreading the sun safety message...
The teen in this video goes to the high school in which I was speaking!

We wrapped up with any last questions, and then a mini-survey for them to fill out. This was an anonymous, 3 question form (2 of the 3 questions were yes/no types).  Their responses were remarkable!  Check them out!  Read what THEY had to Responses

It was an incredible afternoon, to say the least!  I want to give a huge shout out to Mr. Reed, for inviting me into his classes...and to ALL of the amazing teens I got to meet!  YOU GUYS ROCK!