• Dragonslaying Blog
  • Gallery of Armor
  • Links
  • Dragonslaying Mix
  Adventures of a Girl with Hodgkins

The "R" Word

6/7/2011

5 Comments

 
I had my end-of-chemo-PET scan a week ago Wednesday.  It’s a routine test given to us cancer patients, which involves drinking radioactive dye and getting in one of those MRI tubes so the techs can take photos of your insides. (You end up with a photo that looks not unlike those new TSA full body scans, only those are free and the one I got cost $12,000. One the up side, there was no slow dude in front of me trying to unpack three laptops with all of the grace and speed of a wounded basset hound.)

Dr. Fishman recommended I get this test back in February when I finished chemo, mostly as a baseline against which to measure all future scans. And…”just to be sure.”    I put off getting the scan for a month and then scheduled it and then rescheduled it twice after that.  

“What’s the rush?” I thought. I mean, if my scans came back clean half way through chemo (which they did) surely another 6 rounds of that stuff could only have made me extra cancer free or super-cancer free or something like that. Besides, three months out from chemo, I’m busy.  I’m working again. And I *really* needed a pedicure.  Plus no matter how much they try to disguise the label with pictures of strawberries, that disgusting contrast dye shake tastes like “berries” the way that air freshener sprayed over rotting meat smells like “lilacs”.   

And if I’m being totally honest (and let’s face it, that’s what blogs are for) I knew that even though there was NO way I still had cancer in my body, that if for some crazy reason I did….I kinda didn’t want to know.

Let’s just say when you relapse with Hodgkins, the treatment starts with a month-long stay in the hospital where they put you in a bubble and totally blow away your immune system. Then they give you a transplant of your own stem cells. After that you get 6 months of chemo. Then radiation.  (I know all of this because it happened to my friend Mia, who is twice as brave and fierce and amazing than I could ever hope to be.)   

I would tell you that the thought of all of that totally freaked me out, except I can’t. I don’t really know what the thought of that feels like, because I never entertained that thought. 

What I did know was that I made it through chemo with my sanity intact – but just barely.  I also knew that if I considered the thought of a relapse even for one second, I might go totally, completely and irretrievably batshit crazy. (And not crazy in that fun, “my-life-is-a-Laverne-and-Shirley-episode” kinda way.  I mean the other way. The “talking-to-yourself-real-loud-and-punching-invisible-bad-guys-in-public” kinda way.)

So that’s all to say, I tried not to think about it.  And I knew I would be okay.  So except for the momentary gag reflex when I forced down the “triple berry shake”, this whole PET scan thing was a total non-event.

Or so I thought. 

I was getting ready for work when I got a message from Dr. Fishman’s receptionist.  It was short, sweet and to the point: “The doctor would like you to call him.” 

Well…shit.  That doesn’t sound good.  Doctors are usually too busy to give you good news in person over the phone.   I listened to the message again and then stared at my phone for about a minute.  “What’s up?”  Charlie asked.  “Fishman wants me to call him,” I replied.  While I refused to meet his gaze, I could see out of the corner of my eye a very small, barely perceptible flash of sheer panic on his face.  Charlie also knows that doctors never call with good news.

I dialed the number and tried to stay as calm as possible.  I had to hold for about 3 minutes (roughly about 4 ½  hours in “waiting for the diagnosis” years).  Finally I heard Fishman’s very authoritarian sounding voice come on the line.  He asked how I was feeling.  “Oh great, just great.” I said, lying through my teeth. I actually had been feeling great about 20 minutes before.  Right then I thought I was going to puke.  “Well,” he said “I just wanted to tell you that your scans look excellent.  I would say you’re in full remission.”  

Full. Remission.   Just typing those words now gives me goose bumps all over again.

I hung up the phone and immediately burst into tears.  Charlie hugged me as I said, though sobs “he…s-s-s-said…I’m…in…remission.”  Charlie managed to both smile and look a little freaked out, the way most guys do when they see the waterworks.  “Are these good tears?”  he asked.  I nodded.  And they were good tears.  But I realized I didn’t really feel happy. I mostly felt...relieved. 

It's like I had girded up for battle, fought the good fight, took a lot of hits along the way, and through it all the only way I kept going was to never entertain the idea that it might NOT be okay -- that I might not be okay. That sense of optimism was my magic lasso, my invisible jet, my Rocinante, all rolled into one.  And it worked. It held me together. Allowed me to kick some serious butt.  The flip side is that without realizing it, I spent the better part of the last nine months holding my breath.  I guess it took hearing official confirmation from a guy with letters after his name, to finally exhale.

Later that day I found myself at the Sculpture Garden enjoying some of the free jazz and not-so-free sangria they have there (if you’re in or around DC on any given Friday this summer, you should check out both: http://www.nga.gov/programs/jazz)

Thanks to Charlie who had beaten me there by at least an hour, I had a prime seat along the fountain, toes in water.  About two hours into the show, ominous black clouds rolled in from the east. Lightning crackled through the sky like a thousand fireflies doing their best impression of Rolling Thunder (without the Sarah Palin photo-op.) The rain started immediately fast and furious.  Folks all around me grabbed their blankets and pitchers of sangria (and this being DC, their Tory Burch flats) and scrambled for cover.  Everyone, that is, except for me.  Some little, but very firm, voice in the back of my head said, “stay.”   (Actually it said “stay, but take your toes out of the water for god’s sake – it’s lightning!”)

So I did.  (both)

I watched the drops falling on the water in the fountain, hitting the surface in a way that made them look like they were doing a frenetic little happy dance, ecstatic at being freed from whichever dark cloud they had come from.  It was the kind of show you don’t see every day, either because you’re stuck inside, or not paying attention or too busy running for cover.  It was raw and beautiful and made me laugh out loud.  I felt like a little kid at the Icecapades. 

Staying there, in the midst of that lashing rain also felt like church, like I was being baptized anew, reborn as someone who looked a lot like my old self, except for stronger and wiser in ways I had never imagined before.

Bearing witness to that downpour felt like an offering to the universe, an acknowlegement  of all that life has both taken away and given me over the past 18 months.  And it was a great reminder that things bigger than us -- things that we cannot control -- will upend our lives in ways small (the sudden soaking rainstorm, the blown tire) and big (cancer, a tornado that wipes out an entire community).   These moments are part and parcel of being alive.  And if we can weather the initial influx of pain, sit still and just bear witness, that sudden downpour can be as beautiful as the most breathtaking sunset.

Staying put was also an offering to myself, to that scared inner part of me that had held her breath for so long.  Yes the lighting crackles and the thunder roars and rain comes down in sheets, but eventually it stops.  And it's then you realize you’re still alive -- soaking wet, but still laughing.

5 Comments
Paula Morgan
6/7/2011 06:55:08 am

Incredible!! So impressed with your courage and congratulations on your remission!
Love Paula,
Breast Cancer patient for another 19 weeks
Making Cancer my Bitch

Reply
Maria Cristiano
6/7/2011 07:17:30 am

You probably don't remember me - we met last summer at LBI at the Cugina Convention. You were just beginning your battle and we met for the briefest moment. I am Charlie's cousin (duh - cugina convention!!)
Anyway, congratulations on your victory. Obviously you had amazing doctors and an awesome support system. But I know that the real credit goes to you. You are right, life will always have an unlimited supply of surprises to throw in our paths. As we approach each one we have to choose - sometimes pretty fast - how we are going to handle them. And it just seems to me that the people that meet the challenges head - on, who face the fear and the pain but somehow manage to lift their eyes up even for a second and see that there is still beauty and hope and joy find the strength to fight and win. I know that it is not easy. And I know that it can feel like it will never get better. But you know it does. You know that finding a way to embrace the blessings when all around you seems bleak is really the key. I pray that God continues to Bless you with health and strength and love. I believe he will because you are a walking testament to the power of those things to do good. I look forward to seeing you in LBI this summer - a healthy, beautiful woman who fought the good fight and won!!

Reply
Pauline Steinhorn
6/8/2011 02:58:55 am

Erin - Thrilled to hear your good news!
I love your writing. I was with you every word, every image and emotion. Please don't stop writing. It is a gift from the gods and one that you should share with the world, whatever the topic.

Reply
liz link
6/16/2011 02:35:01 am

Hey,
I am very happy for you, truly happy for you. Your life is yours again! Its no longer on pause or threatened, simply yours - to live and direct in what ever direction you choose and its a great feeling to have that type of control back, especially after loosing it and being submissive to doctors or illness. It is a pleasure to read your mind and get a glimpse of your soul among these "pages". Remember this feeling for new found freedom, since its rare and by no means available for everyone for whatever circumstance. I don't know in how many words or ways I can express my only point, you got anther chance to be your own master, take this chance and hold on for as long as humanly possible, and then hold on some more,,, and tighter.

Reply
liz Belilovskaya, i'm also the person above this comment link
7/18/2011 06:07:40 am

Hey Dragon Slayer,
My name is Liz and I have been following your blog for the last several months. First, congratulations on the "R" word. It is amazing that you reached this point, stay healthy and active.
That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey.

Either way, thank you so much for your writing. Take care and best regards.
-Liz@ihadcancer.com-If anyone wants info on I Had Cancer please email me.

Reply



Leave a Reply.

    Author

    Standing in the breach, trying to hold the flashlight for love.

    Picture

    Archives

    November 2016
    January 2014
    July 2012
    June 2012
    May 2012
    April 2012
    December 2011
    November 2011
    June 2011
    April 2011
    March 2011
    February 2011
    January 2011
    December 2010
    November 2010
    October 2010
    September 2010

    Categories

    All

    RSS Feed