Tuesday, November 20, 2012

Words Frozen in Time

At the beginning. I love you and am proud of you, sweet girl. 
I’ve actually been taking tangible steps toward recreating this blog into a book for a wider audience.  A huge part of getting a manuscript and proposal ready to pitch to literary agents and publishers has been going back through it all, rereading, editing, organizing, trimming. That’s been a journey in and of itself and I realize why it’s taken me so long to find the strength to be able to do it. It’s eerie and it's tough to relive it all and to hear my own voice and perspective change as I read about everything I’ve been through. 

However, I’m confident that I’m finally in a place where I can handle it and see past my own insecurities to the greater good that sharing this story can bring. Someone told me in the very beginning that I should write a book but I thought that my cancer story wasn't unique enough; I had an "easy" cancer that'd be cured with simple therapy. Well, now I've certainly got a lot more fodder to work with. My story most definitely isn't mainstream.

It’s strange because I read it and just feel awful for this young woman. I know what’s going to happen, obviously, but even so am disappointed with every relapse and devastated at the side effects and choices that had to be made. I read it as if it’s not me, but someone else, a coping mechanism I’m familiar with relying on. The blog has helped me to remove myself from this whole situation and now creating it in another medium is like setting another layer of padding. I truly don’t recognize myself in some entries. In others, I remember myself in those moments far too intimately and it can be very painful to relive. It’s been a taxing and revealing creative process so far.

I’m through the first year of treatment and am stunned and rather happy with how naive I was, blissfully unaware of what was to come, but because of that, wrecked by what was happening to me at the time.

At six weeks I wrote that I was sick and tired of having to go through the chemo treatments and deal with the side effects. Six weeks? It’s now been grappling with this disease for 182 weeks.

I wrote about how I could barely drag myself to my eighth ABVD treatment, that I stalled impossibly and even drove past the cancer center to park in a school lot to cry it out until I could muster enough strength to walk through those doors. I’ve now had more than 30 different chemotherapy combinations at five institutions.

I celebrated on my 12th ABVD treatment that I would never be in a chemo chair again; how wrong could I be?

I wrote over and over about how I wanted my port out immediately after treatment. I've now been rocking that chest implant for three years, the third nipple now a permanent fixture I contend with. 

I was proud of myself for never having puked during all my front-line treatment. Little did I know I'd be making up for it tenfold every day through allo transplant, puking becoming a regular part of my routine and wardrobe accouterments. 

I didn’t even know how to spell “autologous” stem cell transplant. I kept writing it as “analogous.” Now I know far more about cancer treatment and its varied therapies than I ever wanted to learn, keeping up with doctors in conversations about HDAC inhibitors, immunomodulators and cell receptors with ease.

I love 26-year-old, freshly diagnosed Karin, but I also want to tell her to wake up, ask her to pay more attention and be more patient, laugh at her unbridled optimism and unfettered confidence that she would overcome and conquer without question. I want to tell her not to be so easily influenced, to seek more research and to stop obsessing about why this happened.

I also want to hug her and have a lot to learn from her, from those very same things I was feeling at the beginning of all of this, a self-assurance that I’ve lost along the way, conceding that no longer am I pushing past, but instead accepting this as my life.

And it’s not just because I’m living with cancer. Any of us who look back at our personal reflections from nearly four years ago will find change, growth and evolution. Growing into myself from a 26 year old to a 30 year old has been fascinating to chronicle, never knowing all along that I’d be doing so for so long.

Reading that emotional and intellectual development is striking and a big reason why I think it’s a story that needs to be told. It is so deeply rooted in truth and honesty of what I knew at that time and what I felt at that moment, not clouded by the experiences I have should I be writing it looking back with today’s perspective. Today’s perspective is completely different having been shaped by experiences I never could have fathomed in the beginning.

We have no idea what we can overcome until we have no choice but to do so. It makes me proud and humbled and (sometimes) fearless. When looking at what I’m grateful for during this time of thanks giving, it’s that “thing,” whatever it is, a combination of many things, that got me through all of that and continues to carry me through allowing me the joy to wake up to another morning and all the beautiful possibilities it brings. Holy shit it’s been a crazy ride, my ride.


  1. Like all of your viewers have said all along... YOU ARE AMAZING!! You are Love and Life but most importantly YOU ARE HUMAN! God Bless! xoxo

  2. I encourage you to write a book, I also think it should be made into a movie or documentary.. Your story encompasses a wide range of emotion, humanness , a strong spirit & a deep desire & will to live. You remind us cancer free folk to count our blessing each day. I am reminded no matter how tired, how sick or how down I may feel, I have a choice to change these things.

  3. One word keeps coming to mind as I read this post....Resilience.

    Love you <3

  4. Happy Thanksgiving Karin! I am so glad that you are writing a book- your talent with words and your insight must be shared as widely as possible.

    One idea for the book- you know how sometimes authors choose to devote different chapters in one book to different characters? Like multiple characters? I wonder how it would be if you interspersed chapters written by an older version of yourself in between the chapters that documented your unfolding story. Sort of like what you have just done in this blog entry. It would be like current self and future self's perspective on the same events. I think it might be interesting. It might take a reader a while to realize that in the end the multiple voices are all the same person. God luck with the writing process- I cant wait to buy this someday at Barnes and Noble. Beth