Wednesday, February 6, 2013

Fighting Disease With Words

The below piece was published yesterday on The Huffington Post and is featured in the Healthy Living section as part of the HuffPo's Generation WHY series focused on young adults with cancer. I'll be contributing regularly here, so please become a "fan" or follow me from my Huffington Post page to get alerted to my postings on the news website. This first piece is focused on how blogging has helped me get through the difficult times and accentuate the positive ones that have crept in along this wild adventure. 

Thanks for checking it out!

As a writer and blogger, rather than unraveling at the words my oncologist is speaking, I am able to think about what a juicy story nugget his uncomfortable delivery makes. Once, he was telling me that despite the intensive, debilitating treatment I had just endured, the cancer was back and rapidly spreading. Instead of crying, I focused on the way he bit his bottom lip when delivering difficult news and at the prominent crook in his nose, which looked as if it were broken and re-broken after too many hockey fights.

I focused on his crisp baby blue shirt -- the only color I'd ever seen him wear. I wondered what his closet looked like, imagining hangers upon hangers of stiff collared shirts of only pale blue in checks, stripes and prints hung above a shelf of folded khakis and a row of boat shoes, the makings of the outfit that unfailingly peeked out from under his white lab coat.

As my transplant doctor detailed the risks of infertility, hair loss, permanent organ damage, and, oh yeah, death, I faced, I watched him swing his stethoscope in circles between his fingers, a nervous habit he leaned on when answering my pointed questions about survival rates and statistics. Focusing on these future narrative details saved me from breaking down at the reality of what was happening all around me.

When being wheeled into my many surgeries, I'd note the frigid metal operating table, the roughness of the paper drapings, the smell of the antiseptic, and that of the nauseating plastic breathing tubes in my nostrils. I collected details and wrote each story in my head as I went through the motions of three-and-a-half years (and counting) of uninterrupted cancer treatment.

In 2009, at age 26, I was diagnosed with stage 4b Hodgkin Lymphoma. The diagnosis came as a complete shock, never mind the advanced disease stage. Times have been terrifying, exceedingly beautiful, and incredibly funny -- the makings of great stories, and here I am, living them as the storyteller.

I started a blog a month before cancer was anywhere in my realm. I did it to balance the corporate and marketing writing I did in my career. Just two casual blog posts in, I received my diagnosis and found my unwanted and unexpected muse.

Since then, I have chronicled my journey through stories at The practice is both practical and therapeutic. I can jump right into step when I see friends and family rather than having to rehash difficult updates over and over again. Often, I'll meet new people and they'll tell me they follow my blog, which, after my self-consciousness fades, helps me breathe easier knowing the elephant has already been addressed without me having to awkwardly introduce it.

Blogging has become a welcome responsibility to my readers, who started as friends and family then grew to total strangers -- other cancer patients, caregivers, medical professionals, or those without any ties to this disease but who relate for different reasons. Writing about my adventures gives me purpose at a time when my place in the world is constantly in question.

Knowing that each step in the treatment process potentially makes for its own blog post, I see myself from the outside, watching how I look, how I feel, how everyone around me reacts to each relapse, scan, or little triumph. My blog entries are an alternate reality that helps me to handle the unfathomable reality I am actually living.

If I don't write, my head will clutter with "what-if" scenarios, it will ache trying to process the life-and-death decisions I am constantly having to make regarding my treatment plan, it will flood with the unanswerable "whys." With each post I can digest the most recent piece of the saga and garner the strength to move forward.

I may not always want to talk about the intimacies of what I am going through, but I can write about it. I have to write about it. It is the one thing that I have control of in a world where at times it feels that nothing is in my control: not even my own body.

I have a rare, refractory form of this otherwise "highly curable" cancer, meaning many failed treatments and relapses. I have endured more than 30 chemotherapy drugs, several early phase clinical trials, radiation, immunotherapy, four biopsy surgeries, two autologous stem cell transplants using my own cells, and an allogeneic stem cell transplant using the donated stem cells of my sister to replace my entire immune system.

Through it all I often quip, "The blog just writes itself," at the drama that is always surrounding me, like vials of my blood dropped and shattered on the floor, emergency post-chemo bathroom sessions, lost radiation body molds, crisscrossed EKG leads, insensitive comments of onlookers, chance encounters, and surprise symptoms.

There is no question that writing is cathartic, but chronicling my journey also saves my sanity. My words keep me company in the loneliest of moments. When I can't escape the pain, I can writhe and scream with my words. Even when chained to the IV pole that held bags of chemotherapy, blood and antibiotics that flowed into me via plastic tubing, my writing could take me anywhere I wanted to go.

I endured many hospital stays, one left me confined to the walls of a very small room, no one allowed entering without wearing a mask, gloves and a gown. I had no skin-to-skin human touch and no sight of an unmasked smile for nearly a month. But what quarantine couldn't take away was the connections I could make with my writing. I could illuminate this experience for others who would follow and help to give perspective to those who thankfully would never have to endure something so dehumanizing. I couldn't be with the outside world, but I could connect with fellow humans at an even deeper level through what I shared on my blog and heard in reply.


  1. Hi Karen.
    I am one of those strangers who you will never meet, but who has been following your story from the time I was diagnosed with Hodgkin's in July, 2009, and found your blog when researching my illness. I am so far one of the lucky ones who was treated once with ABVD and have not had a reoccurance. I am 59 and have lupus, osteoporosis, and other autoimmune conditions, so I am not exactly the picture of health either. I have read every word you have written and to me you are a star. It's funny how all of us who read your blog know you intimately - through your words, but you will never know us. You're kind of like a movie star and we're your fans. Reading about your amazing struggle helps me to be constantly greatful for the 3.5 years I have had my life back. I know that a spontaneous remission is possible for you and if there ever was a person who deserved one, it's you Karen. Keep up the good work you do of helping others by sharing your life with us. Your writing is an amazing talent and it is your purpose. Thank you.

    One of your fans from Atlanta, GA

  2. You certainly do illuminate and provide perspective, and for that I'm very grateful. My cancer journey is quite different from yours, but we are all connected through disease and more importantly, through words.

  3. You are such a rock star lady. Keep kickin' ass like you do.

    Sending Love,


  4. I am so incredibly proud of you!!! Keep on being you, my friend. I promise to keep on reading.



  5. I to am a hodgkins lymphoma survivor and have followed your blog since the beginning. I came across it from a friend of a friend of a friend of yours from a lymphoma society lite the nite walk we did through our Arlington, VA kickball league. I had a 2 year fight and am proud to say I am coming up on 10 years cancer free this December. Thank you for your amazing blog and your continued inspiration in my life.
    You are a star and remember it is all worth it.
    L, Kari

  6. This is the first time I have read your blog and you knocked me away. You are such a talented writer and I know it is your way of handling your disease but it is cathartic and meaningful to all of us who read you. I found you through Chris-alt-delete. Chris is my cousin who also suffers from the same disease. Your blog, as any blog, I have read of cancer patients, puts everything in perspective. Thank you for sharing. I try to handle mine through blogging and humor. You truly rock, Kari and good luck in your continued battle.