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 12^th 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.

Intentions

It's now one week into 2011. Though I don't like to get caught up in the resolution hype, I do think that this is a time of year for reflection. The idea of "wiping the slate clean" doesn't appeal to me. All of the experiences of my past are what make me who I am in this moment. I wouldn't trade them for anything. Every choice that I've made, every hurdle I've crossed, every time I've fallen and gotten back up has led me to this. I can't let go of what's shaped me. And, looking back, it's unnerving, pride inducing and tremendously humbling to see where I've been.

Despite all of the trials the year brought, it's been a pivotal year full of much personal growth, beauty and light. I:

• Literally stomached dozens of husband-administered shots of hormones to the stomach
• Together with Craig, created three beautiful embryos now peacefully living in cryopreservation until we are ready to thaw them
• Endured two lymph node biopsy surgeries and two bone marrow biopsies
• Grew an even tighter bond with the wild Miss Sammy Dog
• Enjoyed several Emergency Room visits
• Discovered so much love around me
• Had a Quentin catheter jammed into my neck and shoved down my subclavian with only local anesthesia
• Learned to hope for the best, prepare for the worst, adapt. adapt. adapt.
• Reaped the benefits of amazing friends and supporters at two extremely moving and humbling fundraisers and a Be The Match donor drive
• Watched my nephew transform into an adorable miracle of a little man and found out that I'll be an aunt for a second time (this time to a baby girl!)
• Healed those damn anal fissures that haunted 2009
• Took a painting class
• Received many bags of life saving red blood cells and platelets and despite some hives, escaped any serious reactions
• Created 12 million stem cells
• Mastered the art of packing and unpacking and repacking
• Made it through the year with only two, count 'em, two vomit sessions
• Became quite the chef – especially with farm to table food
• Learned how to cope with living as a hospital inpatient for days at a time
• Have become more honored every day to be the daughter of my unbelievable parents
• Had nurses coming into my home twice a day to pump me with chemo drugs
• Handled ICE, DICEP and BEAM high-dose chemotherapies and all of their debilitating side effects. Endured a mini, immediately followed by a full, autologous stem cell transplant. Then GND and Bendamustine chemotherapies ...
• Took a mini-vacation by myself
• Learned to snap basil off from the top of the plant and how to properly pick edamame, green beans and cherry tomatoes off the vine
• Fell even deeper in love with my husband
• Hiked and walked many, many miles
• Learned how to lean on people when I need them and to no longer be afraid to take a helping hand when I need a boost
• Pulled out of several days of shaking chills and high neutropenic fevers to walk out of Smilow Cancer Center completely on my own, carrying all of my own bags, just 10 days post autologous stem cell transplant
• Rekindled so many old friendships and sparked countless new ones
• Lost, then regenerated all of my taste buds
• Became an honorary New Yorker who can now hail a cab like a pro, navigate Manhattan city blocks and avenues, and knows the Metro North New Haven and Harlem line stops by heart
• Developed a yoga practice that has become sacred to me and become something that I'm quite good at
• Made my first dough from scratch
• Learned that my younger sister and I are much more alike than I ever thought
• Met many angels on Earth in the form of my medical team
• Blogged, blogged and blogged some more, further kindling my deep love for writing
• Connected with truly amazing and inspiring individuals from all over the country – my fellow cancer warriors
• Discovered a love for bed and breakfasts in Newport and New Hampshire
• Ran the Rocky stairs in Philadelphia
• Survived eight months post transplant and feel stronger and more confident every day
• Built an entirely new immune system
• Went on our first cruise traveling to Puerto Rico, St. Thomas, St. John and Turks & Caicos where I celebrated my 28th birthday with salty margarita in hand and white sand as soft as flour between my toes
• Taught myself to research and comprehend complex medical jargon surrounding cancer research, medicine and treatment
• Kept our household going – from administrative work to housekeeping
• Navigated the intricacies of short-term disability, long-term disability, FMLA, leave of absence, health care co-pays and deductibles and pre-approvals and reimbursements and pre-existing condition clauses and statements of benefits and hospital bills and doctor bills and ... .
• Learned to kayak and spent much time on the Farmington River
• Lost my hair, eyebrows and eyelashes completely and grew them all back fully – for a second time – each now fuller and softer than ever
• Kept my head on straight and my body strong despite some major blows

In 2011 I envision many, many more good things to come. My yoga instructor said in class the other day that if you put it out there, it will happen, but you have to make the space within yourself to let it happen. There is no room for negativity, anger, fear. So I'm putting it out there and I'm leaving space for the good.

My intention for 2011 is simple: To be mindful in everything that I do and fully invested in each experience – from the simplest to the most complex. To live each day with intention and an open heart, grateful for every moment that I have.

With this intention, I move into another year of working toward those two words that I keep coming back to: STRENGTH and PEACE. Building strength in my body and my mind to get me through the difficult times. This continued strength is what will get me toward finally finding peace within my body. A body without cancer. No more cellular battles, no more ravaging inflammation. No more fighting, fighting, fighting against this disease – but instead everything will be at peace, dancing in harmony and all will be in balance once again.