Tuesday, August 2, 2011

The Breakup

Sounds strange, but good news can be difficult to take. In a way, I feel a loss. Having aggressive refractory disease will do that to you. Whenever good news is delivered about clear scans or positive movements forward, I find myself receiving it with a skeptic’s embrace. I’m thrilled to no end about the condition I’m in right now, but it’s hard to quench the worry that it isn’t a permanent condition. The many, many, many times the disease has begun to retreat only to figure out its attacker and come back within just a few weeks has left me with scars of hesitancy that I don’t know will ever heal. I’m like a timid dog just let out of my very small cage after years of abuse. I need to retrain myself to trust and accept that this battle may actually be fizzling – a slow burn-off, but fizzling into health nonetheless.

I was so naive in December of 2009 when after six months of ABVD treatment against the Hodgkin Lymphoma, Craig and I threw a “Kicked Cancer’s Ass” party. There was no reason to think that I hadn’t. My November PET Scans showed a full response – and a vast majority of Hodgkin patients are done at that point. In January when a cough developed and my chest felt like an elephant was yawning and stretching inside my sternum, I knew the celebration had been premature.

It’s hard for me to wrap my brain around the fact that the treatment I’m undergoing right now is a constant therapy. It’s not drugs and poison that are haplessly trying to seek and destroy cancer cells and my good cells along with it. That part is over, but not so easily forgotten. I’ve been burned so many times – 24 different chemo drugs in 9 combinations. Each one worked initially, but the cancer ultimately proved to be too resilient for any to provide a forever cure. But unlike those, this immunotherapy is my cure and I look forward to that two-year mark when I can say in great confidence that I am in long-term remission. For a long time I’ll still be leery, but at least now, with negative side effects diminishing daily, I can live my life without the physical disabilities weighing around my neck like a noose. That rope has been cut.

But again, there’s that unexpected feeling of loss. It’s like an unrequited relationship with an ex-lover. Hodgkin was destructive and abusive but somehow we kept finding each other and I kept finding myself falling back into its strangling arms. I’d dig my way out and think I’d moved on then he – it – was back with a vengeance, overtaking me. There was nowhere I could hide so I had to dance with the cancer, to adapt with it and work with it in order to get out of the relationship alive. I had to give tough love back until we could find common ground amid the battles and the tender moments. Hodgkin needed something from me and I needed something from it. I hope it is as satisfied as I am right now and that we’ll forever be able to live in harmony and peace. I’ve been running toward this peace with all my energies, now I’m happily running toward peak health with that peace I’d been seeking finally right there within my heart.

As detrimental as it was to my entire being, cancer, its treatments, and the very small world it put me in, are what’s been familiar for so long now. The aches are familiar. The fatigue is familiar. The nausea, the mood swings, the foggy headedness is familiar. What’s not familiar is being able to take a deep breath without coughing or to be able to crack a joke with perfect timing or process a scenario with ease, confidence and clarity – comforts I haven’t known in a very long time. I didn’t realize how much Hodgkin was holding me back. I love how free I feel right now. I love that all parts of me feel aligned again, a truly miraculous sensation. What’s even more miraculous is that I’m only 46 days into this forever healing. For the first time in more than two years I’m not getting better only to gear up for the next toxic therapy challenge. If I feel like this so early out of the gate, what will it be like years from now? I imagine it to be nothing less than bliss run rampant.

Cancer is and always will be a part of me in some form in the theoretical and the biological sense, but what doesn’t have to remain is the baggage that it carries. A fuzzy, painful, uneasy world was my world for a very long time, but I fell into its syncopations because I had no choice but to absorb the punches. Now I’m introducing myself into an entire new world, a world in which I’m punching back into the air with zeal. It’s not like the world I was in even before cancer: it’s even sweeter, more tender and graceful, and more inspiring by the moment. I would not realize this had I not seen what hell looks like. I would not have known the breadth of my capabilities to move, feel, think, create, and connect with others on this wild ride we call life. A life that to me is no less than heaven.

I know my relationship with cancer is not over, but I hope we remain friends. It will take a long time to heal from the forever imprints it has made on my being – a tattoo inked during a 29-month bender. I will hear, feel or taste something in the air and like a cheesy romance it will take me right back to our tumultuous times together – times of rawness a Hollywood script can’t give justice to. It’ll be just me and that trigger and the rest of the world spinning out of control around us. It can be the scent of an alcohol wipe, the sight of a pulpy blanket, the twitch of my oncologist’s eye.

The memories come flooding out of the abyss. I am in slow motion and completely transfixed with jarring flashes of PET Scan hot spots, bloody gauze, painful needle sticks, and mustard yellow-colored vomit buckets. I’ll find myself itching at glue left on my arm skin from the endless strips of medical tape – glue that isn’t there. Everything around me spins at dizzying speeds and there I am, unable to move, unable to see past the torture of my tormenting lover.

Then it’s over and I breathe and I see my scars in a new light. They are tattooed reminders of that bender that yes, I roared through, but understand that I’m still sobering up from. I’m stumbling back into clarity, still nursing the hangover, still a little buzzed.

“If you’re going through hell, keep on moving. Don’t stop now. If you’re scared don’t show it; you might get out ‘fore the devil even knows you’re there.” – Rodney Atkins


  1. i'm so glad you're doing well. this is written so honestly and beautifully and you are such a talented writer.

  2. "bliss run rampant" is my new motto. Love it! You perfectly capture the idea of savoring life post-cancer while living with the fear of recurrence. It's quite a balancing act.

  3. Karin you are such an inspiration to everyone. You are a constant reminder that life is precious and should not be taken for granted. We love you.

  4. Look at that beautiful smile - beaming!!!

    :) Michelle

  5. Hi again Karin!

    So happy to see you are doing so well so soon after your transplant. Those are some super strong cells your sister gave you.

    I know this feeling so well: cautious joy. I have been cancer free for 9 months now. But Hodgkin's still has a place in the back of my mine. I was just recently taken off the post-transplant anti-viral, anti-fungal, and antibiotic drugs. All I have to take now are vitamins. The freedom I feel is a bit scary, sometimes. Before, making plans required me to check chemo dates and nothing was "written in pen."

    Eventually, being a cancer survivor will stop defining us, but it hasn't happen yet. Well, at least for me.

    Oh, this blog really reminded me of the song "Gravity" by Sara Bareilles: http://youtu.be/nBiGrHc0Xy4.

    "Something always brings me back to you.
    It never takes too long.
    No matter what I say or do I'll still feel you here 'til the moment I'm gone.

    You hold me without touch.
    You keep me without chains.
    I never wanted anything so much than to drown in your love and not feel your rain.

    Set me free, leave me be. I don't want to fall another moment into your gravity.
    Here I am and I stand so tall, just the way I'm supposed to be.
    But you're on to me and all over me.

    You loved me 'cause I'm fragile.
    When I thought that I was strong.
    But you touch me for a little while and all my fragile strength is gone.

    Set me free, leave me be. I don't want to fall another moment into your gravity.
    Here I am and I stand so tall, just the way I'm supposed to be.
    But you're on to me and all over me.

    I live here on my knees as I try to make you see that you're everything I think I need here on the ground.
    But you're neither friend nor foe though I can't seem to let you go.
    The one thing that I still know is that you're keeping me down...
    You're on to me, on to me, and all over...
    Something always brings me back to you.
    It never takes too long."

    Much love! And congrats! You have earned it!
    Pegah *_*

  6. Karin, I'm so happy to hear you are doing so well. You sound like you are at peace and so forgiving of the Hodgkins, which is probably not an easy thing for you to do. I'm glad you are in this beautiful space! I also loved the "bliss run rampant" phrase--book title, perhaps?

  7. Karin, you write in such an eloquent, honest way. You say so precisely that which I could never. Thank you for sharing your soul. It is bright and beautiful, just like you. xo

  8. YOU (and your sister) DID IT!! What a beautiful thing! There were so many times when there was a lapse in your writing I thought to myself "OMG why ISNT she writing?" then BAM - You have made your path through the thickest vines and walah YOU BEAT DOWN CANCER and KICKED ITS ASS!! I am so excited for you and although you may take some time to get back into the swing of 'normalcy' I have no doubt you will enjoy life more than anyone else in the World with "Eyes WIDE open"! Go get em girl! Breathe in the new you and look at the scars as a huge defeat. They dont make trophies big enough for people like you!

  9. Karin,
    You are an amazing and gifted writer, and to share your journey is so inspiring! Congratulations on your new path in life!