Jagged Little Pill

This was supposed to start with a hero shot.

I had it all planned. Me sitting in one of those beige chairs inside the cancer treatment center that at times over the last seven years has become a second home. IV needle jabbed into a vein on my left hand. The rack holding my meds placed ever so conveniently over my left shoulder in the background, probably with the big bag of obinutuzumab hanging from it. A look of calculated hopeful weariness on my face.

Maybe, I thought, I’ll wait until the rash that typically accompanies my infusion starts. Or maybe I’ll take video of the shakes I get. All of it carefully designed to elicit some combination of sympathy, empathy and inspiration.

My mother and sister laugh when I tell them this. They think I’m kidding. My wife knows better. She knows I’m not.

I joked when I was initially diagnosed with Waldenstrom’s Macroglobulinemia in March, 2014 that I was lucky. That I had some form of incurable cancer that was somehow, too much of a slacker to kill me. What a break. I mean, there are few things more powerful than to end any conversation with “who cares, I have cancer.”

Now it’s become a punchline, an excuse I use to try to get out of everything from doing the dishes to cleaning the litter box to (insert unwanted daily chore here). (Note: I get out of none of those things).

It’s back now for a third time. My blood numbers — the ones I have become a relative expert in — told me last fall this was coming. Even though I look fine. Even though most days I feel fine. Even though by every metric outside of numbers on a page, I am as healthy as the next dad-bodded 40-something slightly overweight because I mean, who doesn’t love cookies, sports writer.

And while there was a sense of dread as I watched the cancer steadily peck away at my red blood cells, in a way there was also this mix of “OK, cool, cancer is back baby! Hero time!”

This sounds dumb. Hell, it is dumb. But in a way, I look back at the spring of 2014 — when I really was sick — with nostalgia. For a while, everything else fell away. I semi-coasted at work (even more than usual). I vividly remember getting into the idea of making dinner for my wife and the kids, often the highlight of my day. Nothing else mattered. Who was getting hired. Who was getting fired. Which of my colleagues were getting the assignments (I wasn’t getting). My seemingly endless pursuit for professional relevance in the city that has become my adopted home.

My days became a series of never-ending internal diagnostic tests, both physically and spiritually. How hard was my heart working as I climbed the steps. What the latest blood panel looked like. Then, as the meds started work, how was I going to use this reprieve to recalibrate everything.

I thought it’d be automatic. That somehow God would be like, “OK kid, I gave you this thing that’s manageable but I want you to make some changes, and here they are.”

For a while, they seemed self-evident. I joined a church. I volunteered with the Red Cross. I left work at work. My ego (as much as it could) went on sabbatical. I ran a half-marathon. I really did feel that in some ways I had reinvented myself. That the perspective I’d lacked has somehow been handed to me free of charge.

Only, it didn’t last. When my cancer came back in 2018, I was pissed. My privilege outweighing my humility (to be fair here, that’s always been a pretty low bar to clear). The steroids I loved the first go-round instead made me moody. I lost my composure over stupid things. I went off in the dugout at a Little League game because the 9-year-old left fielder had the gall to be — a 9-year-old left fielder by placing his glove atop his head while the ball was in play.

Sure, I went back into treatment with the “let’s go” attitude. Sure, I took selfies of me in the chair. Sure you mashed “like” on my Facebook page. I mean, what kind of person doesn’t “like” someone when they say “hey, here’s me fighting cancer.” Yes, I took notes if you didn’t. Yes, I’m keeping score. No, I’m not just kidding.

I gained 25 pounds. I shrugged my shoulders. When my oncologist told me my remission would be shorter this time, I went “meh.” Who cares? Like most movie sequels, the impact of Part II paled in comparison to the urgency of the original. Unlike the first time, I didn’t use my break from treatment as a chance to embrace the things I’d long ignored.

I kept going to church. I didn’t read much of the Bible. Yes, I sang in the choir. No, I didn’t dwell on the meaning of what I was singing (most of the time.) I stopped volunteering for the Red Cross. I stopped running. All the things I’d rightfully minimized resurfaced.

I went back to being the same old “me.” And yeah, that dude is kind of an ass.

The early stages of the pandemic, however briefly, reminded me of those early days of my diagnosis. For a while it was just our family tucked into this protective bubble. We were around each other 24/7. We didn’t drive each other crazy. Our kids didn’t become brats. We got to projects we’d long put off. Even as the world around us went to hell, in some ways I’d never been happier.

The world, however, has this insane habit where it just keeps spinning. It’s relentless like that. And as we’ve started to get back to some semblance of “normal” I found myself falling into habits I’ve long tried to kick. I ran my mouth on Twitter. I attempted to mic drop people in Facebook groups in my constant pursuit to — as comedian John Mulaney put it — become the Mayor of Nothing.

I wrote a long time ago that I expected cancer to shift the tectonic plates within me. I’m still waiting.

That’s why when I saw my numbers start to slide last fall I got … excited? Yeah, kind of excited.

“Woot,” I thought. “I’ll be ‘interesting/sympathetic/hero’ again.”

I girded myself for another round of long days in the treatment chairs, chatting with the nurses. Walking around the other patients — most of whom far sicker than I am — with a “look, I can do this, you can too” air of confidence. The kind that comes not because I am some sort of beacon of anything but because well, I just happened to catch another break in a never-ending string of them.

And in a way, I needed that treatment. A little bit of pain. A little bit of anxiety. A little bit of a brush (a very, very faint brush) with my own mortality.

I viewed it as my penance for those who aren’t as fortunate. For the younger sister of a colleague who died at 20 last year from COVID. For people like my friend Beth, diagnosed with triple negative breast cancer in her late 30s. She’s chronicled her journey in painstaking detail over the last six months. Chemo. (Real chemo, not chemo-lite like I’ve received). Surgery. Radiation. Baldness. Weight loss. All of it.

We have exchanged notes of encouragement over Instagram. I am in awe of her realness. And in a way, when my remission officially ended in early January, I almost looked at going into treatment as a stroke of good fortune. Like, ‘Hell, yeah! I’ve got cancer too baby. I can keep it real too. Let’s Gooooooo.”

Now, I don’t even have that.

Instead of the drip, instead of steroids, instead of rashes and the tremors and the fevers I’m … taking a pill. That’s it. I’m taking a freaking pill.

What a letdown. Where’s the heroism in popping something into your mouth twice a day that — much like parents when the clock ticks past midnight during a sleepover — tells the gene that screws up your bone marrow to shut the hell up and go to sleep?

The plan to go to the pill was semi-last minute. We had planned on real chemo. At my oncologist’s suggestion I went for a second opinion. The doctor I saw suggested the pill, mostly because it’s less toxic and in theory would make me a candidate for a stem cell harvest/transplant down the road, yet another form of therapy that is (checks notes) yes, not nearly as “look at me” as going bald or having surgery or puking my guts out.

The overwhelming feeling I had last night when I took the first one wasn’t anxiety but guilt and some form of Fear Of Missing Out. Why did Beth, who did nothing wrong, get big scary Varsity “holy hell this could kill you” cancer while I got this thing that never really goes away but is now mostly an inconvenience and an “oh by the way” thing?

Maybe I’ll get lucky. The twice-daily pill is not a cure. But it’s going to work for a while. Maybe a long while. But there are also side effects. Most of them run of the mill.

Who knows? Maybe I’ll grow a shell on my back. That’d make me interesting, right?

Meaning … I’m going to be fine. How boring is that?

I have to find a way to define myself. Apparently, cancer isn’t going to sand off the rough edges for me. I’ve tried to let that happen for the last 2500 days or so. I’m still waiting. I’m still struggling to find out why I’ve been spared. I’m terrified that if you strip it away I don’t become some sort of walking story of redemption but just … a pretty damn privileged middle-aged white guy who doesn’t really know what struggle looks like.

I fear there’s a karmic bill coming due that I won’t be able to pay. That the prayers and cards and thoughts that people have sent my way yet again over the last few weeks are being wasted because I am not worthy of them. That I don’t need prayer but some sort of instruction manual titled “OK, Looks Like You’re Going to Live, Here’s What You Do Now Idiot.”

It’s all in my head. God gives grace freely. It’s his greatest gift.

If we had to earn it, we never would. So better just accept it and make the best of it.

I am still an egomaniac. I am still chasing the likes. I am still sometimes far consumed with what others think of me. I’m still a narcissist. (I mean, if you’re still here, I’ve just written 1500 words on it).

But as Jules said at the end of Pulp Fiction.

“I’m trying Ringo. I’m trying real hard.”

For now, that’s going to have to be enough.

Survivor’s Remorse

Yep, that's about right.

Yep, that’s about right.

A year later, it turns out I’m going to live. At least for awhile (give or take the potential of getting smushed by a bus). Now what?

They say there are stages of grief. I probably experienced a portion of them all over the last 12 months following my cancer diagnosis. Denial and Isolation? Hell yeah. Anger? Absolutely. Bargaining? Kinda sorta. Depression? Sure, why not. Acceptance? Well, four out of five ain’t bad, right?

I named this navel gazing, insightful. narcissistic, self-absorbed site “A Blog Called Quest” because a: I didn’t have a better idea. Actually, there is no B. It’s just A. Well, A and the fact that these guys remain the greatest hip-hop group of all-time. So much for truth in advertising. It’s definitely a blog. A quest? Hmmm. Depends on your definition of the word. I could have called it “obvious midlife crisis hastened a bit by unlikely diagnosis of disease that sounds way scarier than it actually is” but the URL was just a little too long.

So what now? After 10 cycles of chemo (and two more to go by September) I’m as healthy as I’ve been since before my kids were born.I went back for a maintenance cycle last month. I’ve had oil changes that were more emotional. My disease isn’t the first thing I think about in the morning or the last thing I think about at night. Call it the upside of arrogance. I never worried that this thing would get me, even as I see others in the handful of Facebook groups I’ve joined struggle to repair their lives as the medicine that’s given me a second chance wreaks havoc with their own immune systems.

The default line here is I should be thankful, right?

A year ago I couldn’t climb the stairs in my house without thinking I was having a heart attack. Now if I do less than an hour on the treadmill or the sorority girl (note, that nickname came from a female cousin in law) errr elliptical machine I get cranky. I’m thinking about a 5K in a couple of weeks (my first race in a decade) and can’t wait until I become one of “those guys” who take their bike riding waaaaay too seriously sometime later this spring even if the truth is I typically get lapped by kids on tricycles.

I would love to sit here and tell you that I’ve figured it out, that I’ve figured me out. Yet I’m no closer now than I was the day my oncologist told me “Hey, you’ve got a rare form of incurable cancer but you’re going to be fine.” He was absolutely right of course, but reconciling two drastically different notions has been maddening.

Cancer got my father at 59. My brother-in-law at 35. Dad built houses. Bill was a teacher (and a good one). There is no explanation for what happened. How a non-smoker can be struck down in his prime by lung cancer is something I’m never going to figure out. How esophageal cancer turned a 6-foot-6, 230-pound titan into a graying, frail old man in six months is terrifying.

My experience has been far different. I’ve joked repeatedly that I have “JV” cancer. Most people think it’s me just being modest (important: as much as I try, modesty isn’t really my thing). I’ve sat in chairs next to folks nearing the end. I’ve watched the nurses come out wearing the blue scrubs with the chemo bags and tenderly administer it. I get four shots to the stomach and a four-hour drip of a drug that is basically little more than a reminder to my white blood cells to get to work and start kicking cancer’s ass.

It’s hard not to think about why I was spared. Why is my life more valuable than any those facing far more dire circumstances. It’s like watching a disaster movie where the entire planet is wiped out but hey, the protagonist is gonna live so really, everything is gonna be OK.

I wish I could tell you I’ve found my purpose. Lord knows I’ve been searching for one. If the last year has taught me anything, it’s that I have spent far too much of the first half of my life screwing around. And yet old habits die hard. I still play video games. I still obsess over what my professional contemporaries are doing (and just as importantly, what I’m NOT doing.) I still stare at my phone way too much, and while I’m becoming more of a grownup on Twitter, I’m still not exactly a paragon of responsible tweeting.

My smart friend Nancy (disclaimer, while this happens to be her name this is also a blatant ripoff of this guy’s work) says repeatedly “You had cancer, not a lobotomy.” Sometimes I’d almost prefer the latter (and my incredibly patient wife would agree). Far too often over the last year I’ve sounded like every politician who has ever promised “change” (no offense Mr. President) only to discover the mechanisms of democracy make progress a difficult and sometimes ugly slog (I’m looking at you Indiana).

I get told all the time that I’m being too hard on myself. That what I’m going through is completely natural, that I need to give myself a break. And I get it. Yet when I’m sitting there undergoing treatment and I see people who would likely switch places with me in an instant, it’s hard not to feel like every second when you waste not maximizing your life is a complete waste of everyone’s time.

There was a blissful stretch last summer where I really did unplug. I focused on my health and my family. I took time off work. I stayed out of the bubble I had lived in for far too long.

Then my numbers started ticking up. I felt my strength return. And the bubble returned, version 2.0. And I realized how incredibly fortunate I am. At my core though, it only made the issues I’ve struggled with for years seem only more urgent.

Every day I deal with intensified expectations. I want to be the best father. The best husband. The best writer. The best son. The best brother. The best (insert whatever I’m doing at a given moment). Every damn day. I can say unequivocally I am a better person than I was five years ago. At the same time that pursuit has made my awareness of my own shortcomings only more acute.

God didn’t spare me so I could win the Stanley Cup on my Playstation one more time. (At least, I’m figuring he didn’t). Trying to figure out what to do with the 40ish years I have left is perplexing. My greatest gift as a writer is my ability to get a handle on people. Whether it’s the best gymnast in the world or the kid at the end of the bench. I can ask the right questions, talk to the right people. And yet I’m no closer to getting the gears in my head straight than I was a year ago. Or five years ago. Or 20.

At least now, though, I’m trying. My family is in the process of joining a church, something my wife and kids have somehow taken faster to than I have. I’m trying to break out of my comfort zone by volunteering for a non-profit. I might not save the world. Not all of it anyway. But I will do my part if it freaking kills me.

Which, thankfully, blessedly it won’t. Not anytime soon at least.

Cancer might not be the best thing that ever happened to me, but it might be among the most important. To fully embrace my life, first I had to realize I might lose it. What a world. What a ride. The quest continues.

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–30–

The Invisible Man

Me and Dad

I didn’t call him enough. I can see that now. That’s on me.

Instead, I ran, just like I always did. I took the path of least resistance with my father because, well, that’s just the way Tom Graves wanted it. In the 59 years he walked the earth, in particular the 35 he spent with me in his life, you could count the number of times things didn’t go his way on two hands. Maybe one.

So when he diagnosed with stage 3 esophageal cancer in the fall of 2009 I did what he wanted. I let it go. Treated it as just another thing on his plate, like the property flipping business he started in retirement. A chore he would take care of on his own terms, thanks for not asking.

So I didn’t. He began chemotherapy in September, 2009 and I made exactly zero change to our routine. I think during his first four months of treatment we might have talked twice.  And when we did, it wasn’t about cancer. What questions I did manage to squeak out (note: my father remains the toughest interview of my life) were met with a simple “Oh, dad’s fine” and the unmistakable subtext that trying to work on a followup was completely unnecessary.

Being 600 miles away in Kentucky and preoccupied with a job and an infant son, I was only too happy to go along. I could hear the frustration in my sister’s voice when she talked about her inability to communicate with him and I wanted no part of it. Better to pretend that everything is fine rather than deal with the messy emotions that come with true honesty.

It’ll be fine, I convinced myself. This will be just another one of those things that he handles alone, like the three heart attacks he suffered between his mid-40s and early 50s. The ones he basically walked off like a bad cold.

He was so fiercely private about his health I literally had to invent an excuse to come home when he underwent surgery in January, 2010 for what he kept referring to as a “blockage” in his intestine. When I surprised him in the hospital, I lied and told him I was in town because a high school friend was having a bachelor party. Seeing him laid up in bed, his body dulled yellow by chemo and nausea forcing him to spit up into a wastebasket every few minutes was jarring. The 6-foot-6, 235-pound in his prime monolith I remembered couldn’t have weighed 170 pounds.

And still, the charade continued. I hung out with him before he went into surgery. We talked about my upcoming Olympic assignment. We talked about Colin, his grandson. We talked about the Redskins (because we always talked about the Redskins). We kept it light.

The day I flew back to Kentucky, I stopped by the hospital to chat. He appeared exhausted but OK. I wasn’t sure if it was going to be the last time I saw him alive, but it kind of felt like it was. It was pleasant but my most vivid memory was how I basically tried to get him to tell me he was proud of me. I needed to hear it. He obliged (kind of) but it wasn’t quite the heartwarming “movie” moment that I’d fantasized about. It felt forced (by me, not by him). I hugged him and left, already preoccupied with thoughts of the Vancouver Olympics.

Barely a month later, he was gone. It wasn’t the cancer technically. His heart, weary of the fight, gave out. I spoke to him a couple of days before that last heart attack. He was back in the hospital and high on pain medication. He thought I was his girlfriend when I initially called. I think the entire conversation lasted 97 seconds. Enough time for one last “I love you” from both of us. While I was able to get home and be in the room when they turned the life support machines off, there was little doubt he was already gone.

Four years later, I still don’t know what to make of his death and how it impacted my life. It’s funny. I miss him more now than I did two years ago. Maybe it took cancer (in some small way) to find the common ground that we failed to reach as adults.

My cancer is different (thank God). I’m not going to die. Not even close. While the first cycle of treatment was a little bumpy (I’ll blog about that later) I’m amazed at my body’s ability to handle constant bombardment of medicine, whether it’s Velcade or the Rituxin that is treating the cancer or the fistful of pills I take daily to ward off the side effects. The early numbers are encouraging. And while I may be in treatment longer than anticipated, my resolve _ thanks in large part to the support of my wife Ellie _ has only strengthened.

Yet sitting in a chair for hours on end (my Rituxin days are a good 7-8 hours long, as are the days when I receive blood transfusions) gives you time to think. I can’t shake the idea of what treatment must have been like for my father.

The thing that has frustrated me the most since this thing has started is the knowledge that I can’t predict on a given day how I’m going to feel. I’ve called out of assignments on my way to them because I’ve been hit with a sudden fever or weakness. I can’t imagine how difficult and painful ceding that power from his mind to his body must have been for dad, who never met a situation he couldn’t find a way to immediately take control of. I imagine it was infuriating and agonizing. I’ll never know, though. I never called to ask. I happily took ‘no’ for an answer.

I shouldn’t have.  I wasn’t a kid when he went through this. I was 35. I was a husband and a father. I was a professional with a career. Yet the balance of power in our relationship never evolved. In many ways I was still the 10-year-old who famously told him once that I didn’t have to do my homework anymore because I was  a big kid. He responded by grounding me.

I fully understand that some of this is on him. That he kept nearly everyone, from his parents to his brothers and sisters to his children, at arm’s length. And because he had a force of will unmatched by anyone perhaps on the planet, we didn’t fight it. We should have. I should have.

The guilt of failing to do that ebbs and flows. I don’t feel it quite as acutely as I did in the immediate aftermath of his passing. Instead, I just miss him. I would have liked to see him as grandfather. He saw his grandson Colin once. He never met my 2-year-old daughter Catherine. I bet she would have owned him. The thought of it makes me laugh.

One of the blessings (if you can call it that) of this illness is that it has forced me to empathize with him. The differences and distance that had us reach out from neutral corners most of the time has disappeared. I feel closer to him in a way. I was wide awake at 4 a.m. last week (thanks steroids!) when I envisioned him walking into the bedroom. He filled the frame (he always did). I didn’t hallucinate but the image was so clear that I started to cry. For years during young adulthood he was on the periphery of my life. Now that I finally have the courage to want him to be a part of the nucleus, he’s gone.

Colin asked Ellie this morning who my dad was. She politely responded “Grandpa Tom” and the name didn’t register in Colin’s ears. Part of that’s on me. I haven’t talked about my dad enough, perhaps because I never talked TO him enough.

Yet Colin needs to know about his grandfather, even if I’m still learning. He needs to know that the reason I do what I do for a living isn’t because it’s cool or because I think I’m good at it. I do this because sports was the one thing my father and I could talk about.

He took me to my first football game when I was 8, the 1982 NFC championship between the Redskins and the Cowboys. Three decades later I can still hear the crowd at RFK chant “We Want Dallas.” The Redskins won. My father was joyful. I was hooked.

I have no idea how my relationship with Colin will evolve over the next 30 years. I want us to be friends when he’s my age. (Hell, I want to be alive when he’s my age). I hope we’re close. I know one thing’s for certain. I won’t raise him to take no for an answer from me. I won’t let him be satisfied if I try to keep him at arm’s length. If that’s the lesson I take from my father’s death, so be it.

Thanks Pop. Sorry I didn’t call enough. For both of us. It won’t happen again.

Dad was a big Motown/R&B guy. I’ll let Marvin show you out: https://www.youtube.com/watch?v=ph0aELhsQoc

Will