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.
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.
The fight goes on. Gratefully.
Feel free to play us out Etta.
Will it’s with tears running down my face that I respond to your remarks. I do not have a blog but I enjoy reading about your journey. There are days that I actually forget I have lymphoma. People have the mindset that lymphoma will change who I am. Thank you for excepting my family to be a part of your family. Mel couldn’t have asked for a better brother. We are in this fight against cancer and know that there is no place for us to go but up. Love you all and I will share this with you, always shoot for the moon and if you miss that’s okay because you will end up among the stars.