Friday, August 13, 2010


Sometimes it feels like my chest will explode with anxiety. Most all the time it feels like my entire body is heavy with the weight of it all. It makes me scared of the idea of lying down –resting – for fear that if I do, the heaviness will pummel at me and crush me into a million tiny pieces. If I keep moving, the fear can't catch me. I have to be sure that I'm always strong enough to be able to somersault out of the way when I see it driving at me from above.

This fear isn't the adrenaline driven type spurred by cheap horror movies or hokey haunted houses, nighttime games of hide and seek, or the menacing Ouija board messages that kept us up at sleepovers. It's not the fear that takes over when a crab grabs hold of your big toe underwater or the one that takes over you as the roller coaster wheels click painfully slowly within the track as it ascends the steep uphill.

It's instead a fear that can take over my mind, permeate all of my thoughts and even wriggle its way into my chest until it forces my heart to beat in overdrive, tightens my muscles taunt, and sends my stomach into
convulsions. That's if I let it. Sometimes even the happiest music and the most seemingly perfect distraction are not powerful enough. Sometimes if I'm very happy it can be worse. This is when the fear creeps up and whispers villain-like in my ear: "This may be the last time you ever see this friend. Enjoy it now, soak it up, it's all going to be over soon." If people are too nice or situations too perfect it can set off a torrent of mixed emotions.

What is it that scares me? It's that 80% of Hodgkin's disease patients are cured with the first line of treatment. I'm on treatment line 4. It's that 2 out of 3 people don't make it through this type of transplant. It's that only 30% are cured (aka long-term remission) without any complications. Treatment related mortality is 15-30% in the first two years post-transplant from Graft vs. Host Disease (GVHD). 40% of patients end up with acute GVHD with symptoms from chronic arthritis, skin tightening, rashes to kidney failure or loss of muscle control. 20% live past the transplant but have another relapse and deal with the disease with palliative chemotherapy.

According to the Dana Farber doctor I met with, whom I think had a PhD in instilling fear (we'll call him Dr. Grim Reaper): "The lymphoma is my worst enemy." In short, even though this transplant has its risks, if I do nothing, this lymphoma will kill me.

It scares me that the type of lymphoma I have has all three factors identified as high-risk: b symptoms at time of relapse, disease coming back in more than one site, and relapse in less than a year out from treatment (try a month in my case). A place like Dana Farber has only seen 40-50 patients like me in the last 10 years.

What quells the fear? Talking to people on the other side through
mentorship programs. Doing the things that I enjoy and using every ounce of strength to kick those negative thoughts in the ass when the do creep in. Mostly this is accomplished by removing myself from the situation. When I hear these doctors outlining the grave statistics for me I tend to see myself as an outsider thinking: "Wow, this is what it's like for a doctor to give a patient some really hard news. This poor family. That poor girl." No matter what, it's not me. When things get really serious, like with Dr. Death, I just focused on the way his lips curled up into a bow like the Grinch who stole Christmas. For better or worse, not internalizing some of the really scary stuff has helped me to keep sane. Craig is the same way. A disturbing meeting with the doctor at Yale was followed not by tears, but instead by a balloon head fashioned from a medical glove. This was the funniest thing we'd ever seen.

There is nothing that I can do to change odds. I can't make the science better and I have to just shrug when I hear these brilliant doctors say to me that unfortunately, they just don't know why this happens and why some people are cured and some are not. There just aren't enough studies or advancements yet. When 80% of people are cured of Hodgkin's (the "good" cancer) at the onset of treatment, it seems that us in the other 20% aren't left with too many options.


  1. It is a good thing that you already are a "one in a million" type person- don't think about where you will fit in the statistics, think about how you will CHANGE them when you beat this!

  2. Hi Karin,

    I happened upon your blog about a month ago now; I believe I found it through someone's posting of blogs on the Susan G. Komen 3-Day site, which I walked in (Boston) a few weeks ago. Either way, I went back to the beginning and have read every single one of your entries. Your story is unbelievable...the first time I read it, I sat here for an hour and just read and cried...there were a few laughs thrown in there too, as you are truly an inspirational and witty writer. Much of what I read in the beginning was familiar to me, as one of my friend's was diagnosed with Hodgkin's about 5 years ago now. She has been in remission for a few years and is doing well...she's actually now pregnant and due in December! I know I don't know you, but you seem like an amazing woman, with a wonderful support network in your husband, family, and friends. I wish you the best of luck with the transplant. I'll be rooting for you!

    Warm regards,
    Erika Walther

  3. Ah the devastation of details
    the somberness of statistics
    finding a place for yourself
    in amidst the turmoil roiling in your brain
    these facts and number, these bearers of grim findings -
    well it's you they are dealing with - the woman who has the where for all to defy all odds, defy negative statistics, defy those who are 'negative naysayers' to project such a beam of perseverance, to project optimism,to conquer the demon!
    For without you and your fortitude to continue with your 'eyes peeled always' so many would not have received your incredible gift - just look to those like Erika Walther, as just one example.
    Carry on brave - and often scared - warrior, continue on your battle to win.
    Remembering to turn to strength of others in laughter and glee - just remember your incredible strength in just who you be,
    cozy feelings, laughable nonoseconds

  4. Karin.....I'm praying for you. Keep the faith.

    Love and Hope,


  5. You are showing everyone who comes into contact with you the incredible power of what you believe. Some people in your position wouldn't have made it this far, but you are moving forward with strength, grace, determination, and beauty. Your life has been enriched over the course of the last year, not diminished.

    Statistics, schmatistics. They represent only what has happened in the past. You are your own human being, your own experience, and unique from what has come before you.

    Everyone who reads your words or sees your face knows that you are not bound by the limitations of statistics.

    Continue to do what you know is right for you, and you will come through the other side, whole again. You give others hope.