Raw. Who am I? Round 2!

My dear sweet Ashia, touched my very soul when she wrote this:

I'm sorry that you are going through this! I love reading about what you're doing whether it's hiking some mountain I have never heard of or planting flowers in some random persons yard you make life seem so adventurous! With all that is going on now I know it may sound crazy (coming from someone who has never been sick other than common stuff) but I want to encourage you because all those side effects don't have to be yours! You said something powerful when you first started your blog some years ago. "Who am I"? You gave us (readers) all the things you knew yourself to be. And then you said you would leave space for us (your friends) to fill in! Well Celeste you are one of the most amazing Women that I know! You are so multi purpose that you pass Super Woman! You can teach a rock to talk lol!! Know that this too shall pass my friend I love you like I love cake! You are a phenomenal Woman❤️😘

Between her sweet words, the amazing support from all of you, and the generosity of those of you who have helped me with concrete discussions of the nitty gritty that are my options ~ as promised ~ I have been thinking.

I don't believe in undue focus on the past.  Still, I've found that looking forward often requires a quick glance back.  I have felt uncharacteristically down over these past weeks.  I mean, I've had a lot of shit to deal with, but what's been so jarring is that I never plumed these depths when I had "a lot of shit to deal with" BEFORE!!!  As Tam Bo put it during one of our discussions,

You are more down and discouraged than I've ever seen you.   I feel like even more than when u had brain cancer.  I get it though.  It's the physically sickest u have ever been and have taken so long to recover.  Add to that the bad cancer news and no wonder u r discouraged.  I know you have done well because of the strong fighter you are.  Is it still F'd up that u gotta do it again?  Hell, ya it is.  Unfair.

I've written of my crazy journey before, particularly here in an Essay for Health Monitor Magazine  When diagnosed with Stage III melanoma in 2003 I was horrified, frightened, pissed.  Brent and I had tearful, hard conversations about what to do (NOTHING!  We knew interferon was not a valid treatment option even then!!), what to think, what my chances of survival were, all that stuff.  BUT!!!  I didn't have TIME to dwell on my fate.  I had a 10 and 12 year old.  I had a husband with a busy medical practice.  I was in the middle of my NP/Master's degree at UAB, a three hour commute from my home!  So - the night before going in for my complete lymph node dissection, a routine procedure at the time since I had a positive sentinel node, was family night - in a very weird and wonderful way.  Knowing I was going to be out of the game for a bit in order to recover, my professors allowed me to take an incomplete for my current semester, with the understanding that when I returned for the NEXT semester, I would complete new classes as scheduled as well as all work that remained from the one I bailed on!  A bit daunting, to say the least!!  One major project required was a video of me completing a head-to-toe, in depth, physical on a child.  As it was not due for a bit, I was not very well prepared.  But, B, always my best advocate and (as he puts it) Balls-to-the-Wall Warrior, was adamant - we were gonna get her done!!!  Fred-o, the 'patient', was laid out on the ever so comfy dining room table covered with a sheet.  Roo held up helpful posters just off camera.  (Sorry, Dr. Ivey, but a girl's gotta do what a girl's gotta do!!!)  B directed with camera rolling!  We did it!  Even if Fred did become a consummate actor in demonstrating reflexes I don't think I hit once during his exam!  With a post-op drain in my right arm pit, I started working on rehab exercises to regain movement and strength as soon as it was allowed.  When the next semester began, I hit the ground running to complete 2 semesters in one.  But!  NONE of that was my real focus.  My children were.  I was laser locked on making sure their lives changed as little as possible.  Of course they knew what was up.  We were honest as possible within the confines of our knowledge and their age.  Nevertheless, they were NOT going to miss soccer or dance.  They were NOT going to spend days in sadness instead of joy.  Not if I could help it.

In 2007 B planted three lovely cherry trees just months before my five year anniversary. Suddenly, another cutaneous melanoma lesion appeared on my left arm.  Still busy people!!!  Working as an NP.  Kids still my life!  Surgeries done.  No positive nodes this time.  Rehab exercises completed.  Back to work.  Miserable, but feeling a bit like a bullet had been dodged, as things were no worse.  2010.  Lung, brain and tonsilar melanoma mets in rapid succession.  Still working with my kiddos.  Fred off in college.  Roo graduating high school with all the pressure of heading to Ga Tech.  Brain met zapped with radiation.  Right upper lobe of my lung removed surgically, as was right tonsil.  No meds or treatments available.  We were sick at heart.  I knew I was in a frighteningly bad spiral.  But, what more was there to do?  B finds a trial with an experimental immunotherapy.  I admit to being somewhat opposed!  What a waste of time, money, and effort for an enormous question mark!!  Yes, B almost lost his mind.  I capitulated and thankfully, Weber knew what he was talking about.  With my last dose of immunotherapy in June of 2013, right up to this last set of scans in August, I remained NED - having no evidence of disease.  15 years with melanoma.  8 years as a Stage IV patient.  8 years alive and well after brain and lung mets.  Nothing short of a miracle in melanoma world.

In fact, B reached out to Dr. Weber just before my most recent scans.  While the plan of care for melanoma peeps like me is being written as we go, BY peeps like me, B asked what Weber recommended going forward?  He replied, "Get these last scans, and celebrate!"  Damn!  This from a man who has spent years being incredibly cautious, reticent, when discussing my future.  Hesitant to use the word "cure" or let me off the hook from future monitoring.  B was thrilled.  I tried hard to be careful, not wanting to make too much of those simple words.

Wary.  Guarded.  These are words that describe me far more than some who know me incredibly well may realize.  Children raised in volatile circumstances become watchful - acutely attuned to those around them.  Hyper aware of changes in tone and facial expression.  They also become fearful, but simultaneously hardened, strong, Teflon coated.  That strength evidenced by the ability to stand perfectly still, never flinching or moving to wipe away spittle that lands upon their face, while those they want most to love them rant and scream.  Their Teflon surface allows them to let various horrors fall away so that when the storm has passed, they carry on.  Smiling.  Finding joy in what they can.  Participating in regular kid stuff with school and friends.

I have come to terms with many things over the past 54 years.  I have become someone of whom I am relatively proud.  I have played some small role in rearing two amazing adults.  I think I have been a good friend to my dear ones, a healthcare provider who practiced with love and integrity, an honest person who tries to help others when I can.  But, I know that that painfully thin, fearful, towheaded girl, despite her steely spine and Teflon surface, remains within me as well.  In some ways, those skills, particularly when combined with my observant, vigilant nature, have stood me in good stead!! And despite what I thought was a careful, measured response to Dr. Weber's words, I think I allowed them to cause cracks and unattached corners, that I did not immediately rush to super glue, in the cheap, house trailer Formica that constituted my armor.

On thinking about the crushing funk in which I've somewhat uncharacteristically found myself over the past 6 weeks, here's what I've come up with:  Despite what I have endured physically in the past, these two abdominal surgeries combined with the adverse reactions to medications have been a misery far greater than I previously experienced.  Most detrimentally however, it frighten me.  Fear.  Something that I thought surviving my childhood and melanoma had banished from my emotional vernacular.  I was wrong.  Now it is all too easy to fear that more of the same will be my ultimate fate.  An aversion to three additional months of abdominal misery with nausea and vomiting seems rational.  And I HATE that!  Being afraid makes me feel weak.  Persistent pain and my malnourished, anemic state, though improving daily, has certainly not helped my mood.  Nor has considerable sleep deprivation, having not had a full night's sleep since August 29.  But ultimately, I think I fell for a fairy tale.  For all these years, I never ONCE let myself think that I was cured, or well, or free.  I kept my Formica carapace intact.  It was lame.  It was cracked, often peeling up at the corners.  But, as I held it together, I was protected.  My guard was up.  I was ready, no matter what.  Until, I wasn't.  I let myself believe that I was done.  I had my scans.  We ate our hair filled breakfast.  I wasn't worried.  I was happy.  I was normal. I could live.  WE were free.  Free to have a new life.  Free to just be.  So when this round hit.  I was not prepared.  I had not battened down the hatches.  I let that shitty, ugly, white with a gold squiggly thread running through it, house trailer Formica suit of armor be ripped away, leaving me raw and exposed.

So here we are.  I have love.  I have dear ones who are more than willing to light the way when my own light is dim.  I realize that fear is not something I can dismiss in a moment.  But, through what each of you have shared with me and what I can now see about myself...I know it is something I can master....rather than the other way round. Like I've told hundreds of parents over the years, peer pressure is not always a bad thing.  Kids sit down and eat their veggies if they see the other "cool kids" doing it.  They get out their books and work to read, because their teachers and friends do so.  Similarly, my dear ones, I want to be the woman you say you know.  I want to be strong.  I want to teach a rock to talk!  And, with your help - I really think I can.  - love, les