The Elephant and the Hermit Crab

“There are people I’d like to settle into a drink with.  Not for the sole reason of getting drunk, but for the ritual of lubricating someone’s personality.”  ~Dave Matthews

There is an elephant in the room!  I repeat, there is an elephant.  Hello?  Anyone?  Anyone?  We’ll come back to that!

Tomorrow is a pretty big day: I finally meet with my oncologist.  We set up “a plan” or something like that.  Because we’re not done.  It seems we’re never done.

On Monday, I got my drain out, which was an I-want-to-barf-full-sweat-hot-mess kind of situation this time around (sexy?).  It was jammed in there, said the physician’s assistant, which it just code for, sorry but this is going to fucking hurt.

It fucking hurt.

I am going to share with you what she said to me, because… I can; I love you but you need to be with me and hear this one, if I was subjected to it, so can you be: pulling the tube out will feel the way a slimy pasta noodle feels when you swallow it halfway and then pull it out.  Sean was there, he heard it too.  Maybe don’t tell patients that.  That’s just gross.  Pasta may be ruined for me (wait, was that the point all along?  Pasta is in the bad carb category that can be associated with cancers; ah but wait there again, just about everything is blamed for or associated with cancer; no win here, it’s all circles now).  I’m a “1-2-3 but pull on 1” kind of person (you know, keep counting so I don’t know what’s going on and my brain is still just following the numbers even as the pain sets in).

Well, anyway, it was at least out.  No results yet.  Would I like to set up genetic counseling?  Sure, why not.  I’m a scientist, I’m curious, I’d like to know more and help the scientific community.  And I’ve got some free time right now (I’m still on leave from work as we sort all of this out).  Let’s find out if I’m in the 10% of breast cancer patients that have the gene.  Because I’m so young, I’m eligible for counseling.  Cool?  I guess.  Yay, science, yay, research patient.

The elephant is this: this isn’t me but it’s totally me!  Do you get it?!  You don’t yet.  You shouldn’t yet.  It’s like a jedi mind trick or a fortune cookie from Yoda or a Confucious says sort of thing.  Let me explain.

I’ve gotten lots of feedback from so many people about my blog, it has been truly amazing.  I set this up so that you all have to make the choice to come here and learn more.  I will not put my shit on anyone.  But you can join me in the shit if you’d like (I do have a fondness for shit, don’t I?!).  I’m happy to have you!  And all are welcome.

One of the greatest things I’ve heard though is how stunned and/or surprised–maybe a better word?–many of you all are that I am 1) actually writing this and telling you everything and 2) that even though most of it is hard, it’s actually kind of funny and interesting and maybe even exciting to read.  Folks, I love you, I love…. that.

This is who I have always been but I never wanted you to know, and unless you were on the inner circle you couldn’t know (don’t worry, there’s only like five people on the inner circle and don’t go fretting about and racking your brain wondering if you’re one of the five because I totally made that number up; it’s arbitrary but it sounded good).  I am locked up tight, in my shell, quite like a… hermit crab!  (I do believe Catie, Carter and Jill titled me that while working at Ocean Institute).  I do not share my business or personal life with but a few.  Now, we’re talking in depth about my BOOBS!  Yeah, folks, we’re still talking about boobs!  Boobs boobs boobs.  All day.  Implants, sizes, cancerous ones, silicone or saline.  We’re talking about blood and IVs, armpits, drugs, all sorts of lovely shit that has become my current life focus.

THAT’S THE ELEPHANT!

I know how I may seem to most, a bit mysterious, hard to crack, a tough little shit, thoughtful, judging, etc and I am but, obviously, there’s another side, there’s more.  I know everyone sees me slightly differently and uniquely each to themselves but some of those previously mentioned traits may be or should be on your list.  We’re all like onions really, lots and lots of layers.  In that, I am am no different than anyone else.  I just happened to be the case of the extremes: I’ve chosen to do a personality 180 (ok ok, more like a 110) and word vomit you with my great breast tissue issues.  It’s liberating, that’s why I do it.  And it’s also something more.

When you (ok, yeah, me, when I…) are given the news of “you have cancer” (without spending time talking out the facts and details and treatment options and plan), and you just hear that, your mind instantly goes into end-of-the-world overload and covers your highest priority topics.  For me that was:

1) I don’t get to have a family.  (Or get married, travel the world and live my life out) and

2) Have I lived as the person I wanted to be up to this point?  Have I let people in?  Have I shared?  Have I allowed myself to be supported?

Mostly, have I let people know who I really am?

One thing I’ve always struggled with is feeling misunderstood.  There’s a shit-ton more going on in my head than I ever express and I have trouble verbalizing my thoughts properly.  Plus, who really wants to hear my shit?  We’ve all got our own shit too and quite frankly, I like to use our time together to figure you out and not the other way around (hey, I’m a psych minor, I’m always trying to figure people out)!  Here, I have the time to think it, write it, read it and edit it.  And even go back and fix it.  Like twelve times if necessary.  Or just leave it and say fuck it.  Maybe don’t let children read this.  I do curse a lot.

Before we all fall apart, I want you to know that I do not have any current plans to die anytime in the near future.  As you know, I’ve got shit to do!  I’ve since had many chats with Doctors–factoring in the importance of having a family–and surgeries–getting rid of the bad stuff as much as possible–and I know that I have time, time to do all or most of those things in number one and tell you about me for number two (no poop jokes, uh, sorry, that was uncharacteristic of me; no SHIT jokes).

Blogging in this format is ironic to me because it is such a thing of our generation, it’s what we d0, but it sure aint what I do.  We network, we chat, we are whiz kids on computers.  I can check on 50 friends on any given day and see wassup via F-book.  Information flows like crazy in our world.  We’re spoiled in this (I still admire the power and old school connections found in snail mail and sharing actual books, wondering how many people before me handled the letter or the book and where these items traveled… every piece could tell its own story and it allows humans to remember the importance of physical connection, of touch, even if they are not aware that it’s happening).  In this belief, blogging my life story to people I know and interact with daily isn’t something I would ever fathom to do under normal conditions; it’s too… vulnerable.

But, like I said, it’s liberating.  To cast the net, hold my breath and see what comes up has been energizing, lifting, wonderful.  You’re all out there.  So many of you said such kind words and helpful things, sent me books with answers and flowers that make me happy.  You’re all taking this shitty journey with me (and it’s actually not really that shitty anymore since we packed the party bus full of friends, music and booze!).  You have elevated my mood and kept my head above water.  When I’m gearing up for yet another Doctors visit and writing out all my 20 questions, you’re all in the back of my head (and actually quite literally on my phone, computer, street, town, state, doorstep, local bar, state of birth, boat, my mom’s phone, etc) as a captive audience waiting for me to just come back and tell you, that yes, yes, I’m still here and I’m still a feisty shit sticking around to not only kick some cancer ass but to also work on that long ass to-do list that includes family, marriage, career, LIFE!  Shit.  Sheeeeiiiit.  🙂

I started this in part too because: I was exhausted from saying the same story over and over; it’s an awkward topic that you lovely souls may have a hard time hearing about and conjuring words that would magically make the bad cancer cells go away; and I wanted it, I needed it, to be my story from my mouth.

And so it is.

After my drain removal and no pathology reports to be shared from my mastectomy, I was mentally starting to plan for tomorrow’s visit to the oncologist.  Thankfully, Dorien, the Physician’s Assistant, called Tuesday to say that the pathology reports were in and she wanted me to be even more prepared for Friday with questions based on these results.

Oh, the results?

I will level with you: they are OK but not great.  They took every bit of breast tissue out of there (I think, but I will ask tomorrow for sure) and they got almost all clear margins.  Almost.  Fucking almost.  Except on one area where the Ductal Carcinoma In Situ (DCIS) went–within the duct (pretty sure totally within, not on the outside of the duct, gotta ask)–all the way to the end or edge or margin (the cut/removed tissue from mastectomy surgery).  This means that there was not a section of cancer-free cells that they could definitely say, yes, we got it, because we have a clean margin free of evil and corruption.

In my scientific theory, if you took all my breast tissue then what’s left for DCIS to spread too?  Did the semi-evil cells (invasive cells are full evil, they did not find those on the margins thankfully) get to the end and look at each other, shrug and say “fuck, we’re outta pipeline, we’re done burrowing here lets go infect new tubes”, then, “OH SHIT, THE SURGICAL KNIFE, WE’RE DONE FOR!”  My cancer for sure has personality and spunk (it is my cancer after all).

I still don’t quite know how DCIS becomes invasive or how all that works and if DCIS can jump ship, reconfigure it’s DNA and say, “let’s go F up her pec muscle or do a quick change to pure evil and pick a new organ to harass and infest” (you know, you know, more questions for tomorrow!).  I don’t even know if the Doctors have all the answers.  But I think they have a plan (or many plans with lots of statistics and I, yet again, get to… HAVE to… choose something; I choose “don’t die,” to me, that’s simple; stop asking for more complicated decisions).

And from that section you can see how eloquently I take complicated biology information and make it user friendly, voices and personalities and all, as an interpreter and naturalist!

**Disclaimer: I am a marine biologist who deals in whales; not at all as a medical doctor and/or oncologist.

AKA: I am constantly trying to understand this myself and then try to regurgitate it for you.  Oh, the reading!

Well, folks, I imagine that quote at the beginning sounds real good right about now: time to settle into a drink and lubricate some personalities.  We’re deep complicated people (unless your shallow and simple) and that’s what makes being Homo sapiens so fun!  Thank you for supporting me in all of this.  Reading is supporting.  Sharing is supporting.  I’ve realized as a writer (there, I said it, it’s scary but I said it) it is very important to have not just an audience but an engaged one.  And I see it when you leave comments or Like it on Facebook or re-post the link or just visit the page (I have site stats!  3,800 clicks to this site; and Mom and Ash, I know you both clicked it like 400 of those times, so, thanks!).

To conclude, I want to specifically thank my Godparents Carol and Craig.  Ethan and I went to your Makawao church today, Craig, it’s beautiful and with amazing views (we even saw your name on the placard!).  And Carol, especially, shows to me how God may be hiding in the details too, in His ironies: Carol and Craig lived on Maui multiple times because they fell in love with each other there and with the beauty of the islands… I now live there (here, actually, for me) and found my love there (Scupper!  Just kidding, Sean Michael Sultan ;0)… a few years ago Carol went through–began–her battle with breast cancer (double mastectomy, bonus points for the double, auntie, it hurts enough with just one!) and is now a survivor (with an imaginable many check ups that followed and continue to follow)… and now I am battling my cancer and planning my survivorship.

I know I know, I already am a survivor, kinda!  No Beyonce songs, please.

“Run your fingers through my soul.  For once, feel exactly what I feel, believe what I believe, perceive as I perceive, look, experience, examine and for once, just once, understand.”

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