Dear Colin

Colin bowling

Hey little man.

You’re not gonna believe this, but you start kindergarten tomorrow. Note in some far off daydream in my head, but In real life.

Your mother, sister and I will walk you the 400 feet from our front door to the bus stop. We’ll wait for No. 105 to come around the corner. The doors will open. We’ll make sure you have your lunch, your pencils and your courage. You’ll take three big steps up, find the window seat you’re so excited about and sit down.

Then off you’ll go. 

You’ll be fine. Hell, the fact that this is your favorite song means we should just drop you off at the nearest college and be done with it.

You’re ready. Your mother and I are not. Not even close. Sure we’ve known this day was coming since May 20, 2009, when the doctors stubbornly pulled all 9 lbs., 7 ounces of you into the world. (By the way, there’s a good chance your mother’s gall bladder _ the one you held onto as they tried to unwedge your foot from her ribs _ still hasn’t returned to its original shape.) And sure there were times during those first few months when colic made you so angry every night I actually stuffed cotton balls in my ears to survive that I wouldn’t have minded the thought of you finding somewhere else to go every day.

Not anymore. Not by a long shot.

You (and your sister) are the greatest thing to ever happen to anybody ever in the world. It’s as if someone distilled the best parts of us _ your mother’s kindness, grace and generosity, my inherent silliness _ and threw away the rest of the crap when they made you.

Your curiosity astounds me. Your photographic memory scares me. The light burning inside you is so pure that the only thing I want to do is protect it.

Only I can’t. That’s not fair. That’s not the way it goes. For you and for the other 20 kids who will walk into Mrs. Hoyle’s class in what quite literally will be the first day of the rest of your lives.

There’s a lot to do. A lot to know. And the sad truth is when you’re older you’re not going to remember much about your life before school started. There may be an image or two, a thought that might stick with you but beyond that it’ll be some sort of foggy blur.

So I’m going to tell you this now so we can look it up in 20 years and laugh about what a chicken your father was (and probably still is):

You are joy. You are everything that is good stuffed into 38 pounds of skin, bones and bliss.

I know that sounds like a lot to put on your tiny shoulders, but anyone who has spent more than five minutes around you knows it’s true. It’s the only way to explain a kid who turns to either one of his parents randomly and says “Mommy/Daddy, I really love you” and then goes back to whatever he’s doing without asking for something in return. The only way to explain a boy who still needs to touch his mother’s skin before bedtime, who shares his toys with his sister so willingly, who loves with a sincerity that I wondered could ever exist.

I see you and wonder how I could possibly be responsible for half of it. I’ve spent most of my life dealing with a voice in my head that makes me constantly examine my worth. If that same voice pops up in yours, I pray you have the strength (and the confidence) to ignore it the way I couldn’t. 

The greatest days of your life lay ahead. It begins the second the bus doors open tomorrow and you let go of mommy’s hand and grab onto your lunchbox and pull out of sight.

And as much as part of me wants to stop you, take you home and barter with God for another few weeks, another few months, another few years of the seemingly unlimited happiness you have provided us, it’s not what you need. It’s not what you deserve.

Starting tomorrow, your journey really begins. You will learn how to write letters and read books with chapters in them. I predict you’ll become obsessed with math. You’ll sing songs and run races. You’ll make friends that will last a lifetime. You’ll have your heart broken by a girl (eventually). You’ll get sent to the principal’s office (at least once, or you’re doing it wrong). It will be the best time. And I can’t believe I get a front row seat.

In a month this will all seem routine. In a year it will be an afterthought. In five we’ll pull out pictures of your first-ever day of school and your mother and I will laugh about how scared we all were.

We promise to be brave tomorrow morning. We won’t cry until the bus is around the corner, until the little baby with the seemingly inflatable cheeks is on his way to take on the big, bad world. One that will be a little better because you’re in it.

Thank you for the last five years Goobs. They have been the best of my life, no matter how complicated I tried to make it at times. You have taught me how to be a man, a gift I’ll never be able to repay. I’ll try to remind myself (and you) that you’re still our little boy. I’ll make sure to remind you that no matter what adventures await, your mother, sister and I will be there.

We just don’t get to hog you anymore.

It’s time for you to share your light.

May it never go out.

Love,

Daddy

 

 

 

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Of Mice and Men

I get by with a little help from my ummm ... friends

I get by with a little help from my ummm … friends

I keep waiting for this to change me, for the tectonic plates in my soul to suddenly move around and reconstitute themselves, for the rough edges I’ve spent four decades trying to sand away _ my obnoxiousness, my impetuousness and my self-centeredness among others _ to just disappear on their own now simply because I have the qualifier “cancer patient” at the end of my name.

Only they haven’t. Five months after being told I have Waldenstrom’s Macroglobulinemia _ an incurable but highly treatable form of lymphoma _  the clarity about What It All Means I expected to come along with the diagnosis remains elusive. I’m healthy (more on that later) but I’m no closer to figuring things out now than I was the second my oncologist walked into my hospital room back in March, handed me his card and made me, _ how do I put this politely _ freak the (deleted) out.

I thought cancer would give me a sense of purpose, that it would galvanize me in the way it seems to do for so many others. I thought somehow my condition would spur me to volunteer for the Red Cross or the Central Blood Bank since I can no longer donate the one thing that I absolutely need to survive.

I talked about reaching out to find other patients who have what I have to quell the momentary panic that sprints through my mind whenever my inner monologue begins a sentence with the phrase “if this treatment doesn’t work.” I talked about making this blog a regular thing in the hopes it would be therapeutic.

I talked. And talked. And talked. So far I’ve done little more than spend most of the spring and summer obsessing over my weight, my hemoglobin level and my place in the world.

I have somehow turned cancer into a vanity project. The only things missing are a Kardashian, an Instagram account and a well-positioned selfie (relax, not this time America).

When I bring this up to friends or family, I get an uncomfortable laugh in return. They tell me not to be so hard on myself. They tell me to relax and try to enjoy how incredibly lucky I am. They remind me to focus on the way my body is responding and the amazing support system I have in place.

And they’re right (note: they usually are but please don’t tell them I said so) but for some reason that voice in my head, the one that relentlessly reminds me of all the (extremely superficial) things I don’t have in my life _ and all the things I’m not doing with it _ will not shut the (again, deleted) up.

Until today. It’s time. Hell, it’s past time.  Way, way, way past time.

I turned 40 a few weeks ago and realized I’ve wasted most of the first four decades of my life constantly measuring myself against the vision in my head of what I SHOULD be.

And while ambition can be a virtue, too much of it can be maddening. All the anxiety. All the angst. All the hell I gave my parents for buying me Toughskins instead of Levis when I was a kid, no matter that they were saving for my college fund _ a plan that allowed me to be one of the fortunate few who graduated from school debt free. It’s a gift I’ve never properly thanked them for.

It’s time to let it go. To be honest, I was hoping my cancer would do the work for me the way it helped me lose the 30 pounds I’d gained in the last five years. As if somehow the fight that’s been raging in my bone marrow for far too long would also alter the neurons in my brain to permanently change the default setting from “self-absorbed egomaniac” to “grown up.”

It hasn’t, at least not yet.

Don’t get me wrong, this disease is equal parts humbling and harrowing. For the first time in my life, I have truly felt defective (as opposed to the usual normal socially awkward and self aware stuff), like the way your car operates when it’s sipping on ‘E’ as traffic whizzes by.

While my treatment is mild by most cancer standards _ one shot of chemo every 3/4 days and one IV treatment of a drug called Rituxan (made with a combination of mouse and human proteins) during each three-week cycle _ that doesn’t mean it has been smooth.

During my first  Rituxan infusion it felt like there was an earthquake under my chair. One problem: I was the one shaking, not the ground. It was terrifying. I had involuntarily lost control of my body as the Rituxan _ a mix of mice and human proteins that basically serve as a beacon for my white blood cells to get into my cancer-infested marrow and start kicking ass. The nurses pulled the curtain so I wouldn’t freak out the other patients. A shot of Demerol and my breathing slowed. The rigors eased.

And the lessons began.

Her name is Ruth. I didn’t ask but if I had to, I’d guess she was in her early 60s. We’d chatted in the waiting room that day, mostly about the magical qualities of Eat N’ Park smiley face cookies. She wore a pink bandana over her head. She was in for another round of chemo chemo (not the chemo-lite that I’m on).  Her hair was gone. Her voice was hoarse. Her smile was permanent. She’d been diagnosed with breast cancer and brain cancer in 2012. The doctors gave her 10 months. Here it was, more than 18 months later and she was still at it. She could no longer drive (which irritated her) and had to be escorted to therapy by one of her kids (which annoyed her even more).

A few minutes after the earthquake stopped, she walked over, the bag with the life-extending poison still dripping its way into her left arm.

“You doing OK?” she asked.

My response was ummmm, inelegant.

“God damn it Ruth, why are you checking on me? I’m the youngest person in here,” I said.

(And the dumbest, by the way.)

Here I was in a moment of true vulnerability worried about how I looked to the rest of the world. What. An. Idiot.

I laughingly apologized to Ruth before she left. A little while later, my wife Ellie and I struck up a conversation with Margaret, who sat across the room from us enduring her own chemo drip. Six years ago she beat back ovarian cancer. Now it had taken the fight elsewhere. We joked about how getting sick the greatest Jenny Craig diet ever. She lamented the fact she couldn’t ride her tractor even though her grass desperately needed cutting. She told me to “be strong.”

I wondered whether the fortitude that she and Ruth have in abundance would be there for me if I ever really needed it.

Silly me. I shouldn’t have worried. See, I got lucky. I married my strength.

World's greatest everything

World’s greatest everything

Her is Eleanor, which is Greek for “shining light.” For more than a decade she has been one of the few constants in a life I have built with an unintentional sense of impermanence.

We met May, 23 2001 and married four years later. It says something about her _ and about me _ that it was her idea to have our anniversary (June 11 if you wanna send gifts) inscribed on the inside of our wedding bands.

She is the one person in the world not related to me by blood whose belief in my inherent (if sometimes misguided) goodness is unwavering.  And trust me, I have done everything in my power to make her waver.

I say sometimes that living with me isn’t easy. It’s meant to come off as a self-deprecating joke. In most ways it’s not.

I’m moody, self-involved and most days unable to think of much that doesn’t involve what’s directly in front of my face at the moment. She is the Michael Jordan of planning: meticulous, thoughtful and relentless. She is equal parts mother, wife, friend, drill sergeant, teacher and muse.

Oh, and she’s tough as hell. The 13 years we’ve been together haven’t always been good. The overwhelming blame lies with me. I spent the first 20 years of my adult life trying to right all the “wrongs” I felt I’d endured growing up. I became obsessed with what other people thought of me. Am I funny enough? Am I talented enough? Popular enough? Smart enough?  The list is neverending.

And she’s sat there patiently as the days bled into weeks bled into months bled into a life together. She reassures me when I doubt. She picks me up when I’m too damn lazy to do it myself, though over the last three years she’s made sure I do my share of the heavy lifting too.

That demand _ which is really what she’s deserved all along _ is probably what makes our marriage stronger now than it has ever been.

There aren’t words (and trust me, I’ve looked) that can adequately describe how thankful I am that she’s too damn stubborn to bail. During those bumpy early days after the diagnosis, she let me crack all the dumb morbid jokes I wanted. These days she occasionally brings work to the treatment center on the days I receive Rituxan to make sure I’m not lonely or scared or bored or some combination of the three.

She doesn’t do it because I have cancer or because I’m the father of our two children. She does it because she believes in our marriage, our partnership and the unending possibility of what’s to come. And she does it because (and I like to think this is my influence on her) she’s too arrogant to think this thing is going to get the better of us. We have worked too hard. Too. Damn. Hard.

I will never be able to repay her for her kindness and grace. Ever. And I pray God doesn’t ask me to try.

See, here’s the thing: all the stuff that drives me crazy about myself she came to terms with that crap long ago. She has never really asked me to change beyond being committed to the idea that I can change if I feel like it. If I do and it makes me a better person/husband/father? Fantastic. If not? Hey, she’s stuck around this long. No sense bailing now.

There’s another inscription in our wedding bands beside our anniversary (note to gift-givers, we could use some new knives!) — INO.

It stands for It’s Never Over, a nod to the 2.5 years we were apart early in our relationship before she moved to Florida  but one that seems even more fitting today. Our marriage _ like our battle with my disease _ is an evolutionary process. Surrendering on either front is not an option. For her. For me. For our family.

Thank God.

The fight goes on. Gratefully.

Feel free to play us out Etta. 

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