I can't run Boston with the Dana-Farber team this year.
I've not written in nearly a month because committing those eleven words to print rips up my heart.
I've been so ill, increasingly so, since November. Bronchial, lung, and sinus infections, over and over again. Each time, within 3 days of stopping meds, another infection. Two different primary care physicians kept telling me it was "normal", that with a 4 year old and a 2 year old this is what happens, but I knew something wasn't right. All the other moms weren't dropping like flies. Just me. Quit giving me these dumb-ass 10-day doorstopper meds and popping me back into the medical merry-go-round; figure out what is WRONG with me dammit.
So finally I said 'fuck it' and found a specialist - two, in fact. The good news: they did identify what's wrong, and it's a fixable, albeit lengthy, list. The bad news: 4 months of constant illness has left me in a profoundly run-down state. My lung function is about 60%. I believe it; I can't breathe even just sitting. Coughing spasms leave me hyperventilating to get air back in my body. Compound viral lung infections still remain, and blood tests showing that my vitamin B and D levels are nearly non-existent. I burnt through them with chronic illness. My immune and endocrine systems are all haywire and need a re-boot. Allergies I never had before are now a major issue. And I need septum and sinus surgery because somewhere along the line I smushed up my breathing apparatus and it all needs straightening out. Maybe one of the times I got thrown from a horse. Perhaps the time I skiied into a tree and knocked myself out. Who knows? I'm certainly lacking in athletic ability sufficiently to have banged it up on any number of occasions. And like some old Ford jalopy, my schnoz has spluttered along all these years and now, finally, just given out.
At this time last year I could run 20 miles. Now? Now I can't even walk fast without doubling over in a paroxysm of coughs.
I haven't felt this profoundly ill since I had cancer. It's hard to contend with, challenging to articulate what it does to your soul. Cancer leaves a lot of scars. Some are obvious: the warrior slash I wear now at the base of my breast plate, the pale jagged line below my left arm running the length of where my lymph nodes used to be. Some are deeper: the memory of what it felt like to wake up on a spring morning to the sound of birds chirping. For just a moment, you hear them and smell clean air and feel happy. Then you remember the invading thing that now lives inside of you; the cancer consuming your life from the inside out, and the birds fall silent beneath the whir of your brain as you wonder how fast it grew overnight and what it will be like to die. It feels as if your life is now spent trapped in a dimly lit hallway with a slippery floor. At one end, you see the brightly illuminated doorway to your life, and you watch everyone you know and love walk by it as they live, and exist. You wish you could walk down the hall and through that door, be a part of that world beyond even if only to do something as banal as your laundry or to buy groceries, but you can't. The floor is too slippery and the door is too far away. At the other end of the hall lies another doorway, the door ajar. It holds no interest for you - in fact, it's terrifying and fathomless. You feel the floor tilt - a little more sharply each day - and you wish you could pull yourself away from that end of the hall, avoid the door. But you can't. And so you just sit there, interminably, in that dim, lifeless hallway. Just trying to hang on. Just subsisting.
I thought I'd made peace with those memories, but I've been so ill for so long now that it's clear that what I thought were scars were really still just freshly scabbed wounds, wounds easily torn open and laid bare. How else can I explain the kind of insomnia that only seems to happen with profound illness? The kind that wakes you up at 2am with a jolt, because even though you know you need your rest, you are afraid to lose even a moment of cognizance out of fear that you don't know when it is -- you are -- going to disappear? The kind of insomnia where you tiptoe in and sit beside your children's beds and watch them sleep while silent tears fall, terrified you aren't going to be here to see them into adulthood? The kind that impels you to wander through your house in the dark, a few too many pounds overweight to be a legitimate wraith yet feeling like a ghost bearing witness to your own life because you no longer have the energy to meaningfully participate in it?
Now let's be clear here: I.AM.GOING.TO.BE.FINE. I know this because I periodically fake that I forgot my checkbook at the various doctors' offices to gauge how worried they look about whether they are really going to get paid. So far, everyone seems pretty sanguine about it, from which I deduce they are sure I'm going to be around next week and the week after to eventually pay up. In NYC, I figure the extending of unsecured credit is about as sure a sign of my continued mortality as I'm likely to get.
Plus, they told me I'm going to be fine. They also told me I'm neurotic, but you all knew that already. But at present, I am not fine medically and it's haunting me with sharply focused memories of a place and time 11 years ago that I would greatly prefer to not be seeing in such sharp relief.
Those memories are part of what compel me to run with Dana-Farber. The DFMC allows me to be a part of something that works to prevent other people from having to carry the burden of those experiences. Every training mile, every step Marathon Day, is a metaphorical stomp on cancer.
To not run Boston this year is crushing on so many levels, some of which I've still not articulated to anyone. We run for so many people. My pediatric partner, Aaron, is doing well with his treatments and scheduled to finish his last chemotheraphy in July.
I want to run in his honor, but I can't this year.
You have all been so amazingly generous with your donations to Dana-Farber, and have shared with me names and stories of your loved ones who have faced, survived, or been lost to cancer.
I want to run in their honor, but I can't this year.
My DFMC teammates are amazing. No other word for it, unless you want to pick a few other superlatives. Funny, incisive, headstrong, caring, warm, and lots more. I am honored to be on the DFMC team.
I want to run with them, but I can't this year.
And I want to run for me. For my own happiness, health, well-being. Every one of those steps was a conscious statement: "I'm still here." "I'm still moving." "I'm ALIVE, dammit."
Every one of those 55,000-odd footsteps we take from Hopkinton to Boston is a physical validation of who we care about, what we are trying to help achieve, and our own ability to persevere, to whittle away what seems like an insurmountable obstacle until there is nothing left but the soft, welcoming glow of a blue and yellow finish line in the afternoon sun.
So that's the deal. I'm out for 2010, and while I told Jan and Jack and the BAA a month ago, now I guess it is truly official because I've said it aloud to you too.
I'm deferred for 2011. And by the end of April I should have a spanking new septum and be breathing again. By summer, I'll be jogging. By fall, training. And I'll see you in Hopkinton very soon.
XO, Helen.
