Tuesday, February 26, 2013

A Week in the Life of Waiting...

During my week of waiting for my pathology reports to come back, I was thinking a lot about my up and coming gig at the local high school, where I will be presenting about sun safety and melanoma.  What I was trying to figure out, was how to convey the fear/insanity I feel each time I wait for that phone call from my doctor, as a way to illustrate that this disease is a life long diagnosis.

Of course, having LOTS of time in my own head (never a good thing!), I became aware of some "interesting" insights: 1) that the intensity of a waiting period differs each and every time (for reasons I can't explain), 2) that I seem to follow a fear-driven pattern, and 3) I'm not sure I could paint this picture verbally, during a presentation....so, I'm doing it here, where they (the teens from the high school) can come to read about it.

Here's how it goes....the fear ride that occurs after every biopsy...while waiting..for the call...

Tuesday- YAY!  I get to see my dermatologist!  Yes, that thrills me, actually.  I crave the physical check and the mental check in...for my doctor is amazing with both!  My doc studies my body, doing her meticulous investigation of every pigmented cell on my skin.  She agrees that 4 of the moles I have circled, need to come off.  My heart speeds up, as she usually tells me, "That one looks stable; you get to keep it." ...and  rubs away my pen mark with rubbing alcohol. It's like she can't win, really.  If she doesn't take anything off, I worry she is missing something....And if she does feel something needs to be removed, then I worry there is a serious reason behind her decision. So there's that- stuck in worry.....either way.

I leave there with a little extra adrenaline pumping through my veins... no, not from the injections of lidocaine with epinephrin...because actually we use pure lido, but  because I am pleased to have 4 less moles on my body.  I am smiling.  I am happy.

Wednesday- All is well.  I have no expectation of hearing from my doctor with results.  I live my life...I am productive.  I am smiling.  I am happy...with the tiniest wisps of worry making very brief appearances...ever so slightly.  

Thursday- All is a little less well.  The worry visitors start to get comfortable in my mind...they take off their shoes, their coats, as if to say, "We are here to stay awhile."  And they do.

Friday- Ok, so here is the day I DO have an expectation...that my doctor WILL call...and that I WON'T have to wait through the weekend.  The "scenario a cappella group" takes up full residence in my brain...singing every possible thing that my doctor might call and say...ranging from the song about "everything is benign" to the scariest melody about "it's another melanoma".  The clock becomes a huge part of this day...as the hours go by, and the phone does not ring.  And then, in between the songs, I manage to have the argument with myself about whether or not to just make the call myself...ya know, to help her out...and call her.  Back and forth, back and forth...


Of course, I call.  I hang up when voice mail picks up.  I call again.  I leave a message.  And the rest of the day is me trying to keep busy, going through the motions, but all the while, watching the clock, and trying not to call again.  I call again.  And hang up again.  And it's 5:30 pm and I know....I'm not going to know!  

Saturday- The mean reds are here, and without the hope of a phone call.  NO HOPE.  The day drags.  The smile is fading to nothing.  The motions are less. The fear, more.

Sunday- This is getting unbearable.  That fucking a cappella group is launching into endless new songs, the smile is gone, I don't want to do anything.  

Monday- Stomach aches.  Edgy.  Going through the daily grind physically, but mentally NOT there at all.  The phone.  It's pissing me off...every minute that it does not ring.  I can't help myself...I call.  I call again.  I leave a message. I call again.  I get a nice young girl on the other end...I try to tell her calmly that I am waiting for pathology results, that I left a message earlier, that I need to know soon or I'm going to go insane (as if I'm not already there!), and proceed to ask her if she can check the computer, EVEN THOUGH I know she can't tell me what those results are.  She checks.  Nothing in the computer...that she can see.  What does that mean?!?!? The clock says 4:30, I'm pretty much frozen with fear...that I will hear and that it's bad ...or that I won't hear.  HOLY CRAP, this brain is verging on insane.



~My Graphs~






At 4:56, she calls!  Irregular heart beats become apparent.  I answer.  She talks.  I hear good news.  My heart finds its way back to normal.  My smile returns.  I'm not exhausted.  I want to do things...like make dinner and talk to people.  I remember ME.  I remember that this is not really who I am, just what I go through each time I wait...even though, when in the midst of it, it feels permanent.  I'm back.  I'm happy.  I'm happy to be back!  


Photo by Robert Sturman




Monday, February 18, 2013

WARRIOR: The Many Meanings

Do you ever feel there is a theme of sorts swarming around you...that it's impossible not to notice?  Like there is a big web around you, showing you something?  Or telling you something?  

I get this...not all of the time, but when I do, I listen.  I take note.  I become super in tuned, and I let it come at me.  It feels like many different things coming together, yet all with one nucleus...threads from all over the place being strung together.

Some people call it serendipity, others synchronicity...or God, or coincidence, or many other things, I'm sure.  For me, when it happens, it takes on a magical essence, and I open right up and listen! 

Ok, let me explain this, so that it makes some sense rather than sounding crazy...

Right before my trip to Los Angeles, the word warrior started appearing in a vast amount of ways over a short period of time: a new song came on about living like a warrior, a speaker I was listening to talked about being a warrior, a book cover with the title involving the word warrior, yoga poses focused on in class were of the warrior family.  It just seemed to go on.  

It was at that point, I began to notice that much of my trip to L.A. was centered around warriors.  My plans included meeting up with many different warriors.  And I realized that I too was a warrior.  I had never called myself that before this point, but after all that was going on with this warrior theme, I allowed myself to see that I have warrior at my core.  

So, here is where this warrior experience led me...to realize that warriors are all different, that people define warrior in so many amazing ways, and that we ALL have some warrior in us, it's just a matter of finding it and doing something with it.  And here's what was found while in L.A. on this warrior journey:

I met up with mother/author/sun safety educator/melanoma warrior Hillary Fogelson,who wrote the incredibly witty and informative book Pale Girl SPEAKS. Right now, Hillary is revving up for an incredible event she heads up,called Miles for Melanoma Run/Walk, which will take place May 4th in the Los Angeles area.  Please check it out and consider becoming involved!
Respect the Rays & Pale Girl SPEAKS together!


I was also blessed to be able to meet up with a childhood friend who grew up in Pacific Palisades (where I did), who recently had melanoma on his face.  He is just starting to embrace the seriousness of this disease and is getting on board with his sun safety practices!  Go warrior, Geno!  Oh, and I must mention that after Geno's diagnosis, his mother went for a full body skin check, and found out she too had melanoma!!!

Me & Geno lovin' our UPF hats and sunscreen!


When I asked, "What does the word warrior mean to you?" on Respect the Rays, I got so many beautiful responses.  Here are some of the responses that were shared:

"Big fighter, prepared for meaningful battle."

"Never giving up the fight...even if you won your own battle."

"Fall seven times, stand up eight."

"Fighting against all odds...but continuing the fight no matter what."

In the midst of all this, I reached out to an incredible artist friend of mine, Robert Sturman to talk to him about the idea of creating something together that would represent my definition of warrior. And we did!
Fallen Warrior Pose 

There are many definitions of the word warrior, many ways to become one, many ways to express it, and many ways to make use of it.  We are all different, yet all connected in this melanoma journey.  Warriors, we are!

Matisyahu's song Live Like a Warrior

 Are YOU a warrior?  What does it mean to YOU?


*This post is dedicated to all warriors with wings...two of which earned their wings while I was on my trip- Jen and Briana.