Monday, May 25, 2015

Cancer Patient Walks Into A Bar...

I bought a new grill. The old one was 15-years old and as my mother-in-law is fond of saying, "It didn't owe us anything." Parts had worn out, parts had been replaced. Multiple times. It was time. It's now sitting in my garage looking a little sad and lonely but its replacement is out on the patio all shiny and new. 

For the grilling debut we thought we'd try something new, a rack of ribs. I was pretty excited to be sitting out on the patio, having a beer while the ribs slowly cooked to perfection. But the ribs, well they ended up looking like this...

Now beneath the char, they were actually pretty damn tasty, but knowing that we had at least one picky eater, I started planning an alternative dinner and I mentioned to Stacy that I'd eat the well-done ribs and the boys could eat the alternative. 

"You probably shouldn't eat all that char, either," she said.

"Yeah," I said, "I might get lymphoma."

That's a long way to go for this point: even, and perhaps particularly, when you have cancer, you have to keep your sense of humor. Not to make light of your cancer, necessarily, but amidst all the heaviness that cancer contains, sometimes, you have to lighten up, Francis. That's why I love these cards from cancer survivor, Emily McDowell.  

People say crazy things to survivors, almost always because no one ever knows what they should say. They want to acknowledge your news but how? With hope? Sympathy. Pity? Encouragement? All of the above? McDowell's cards strike that perfect pitch - a healthy serving of support, hold the expectations, with an occasional side of humor. My favorite: the lemons one. 


Sunday, May 17, 2015

Glimpses of Perfection

It's been a busy three months, full of soccer, work, and more soccer... and of no oncology appointments. This is the first time since I was diagnosed that I've gone more than three months without an appointment. It takes a little getting used to but hopefully, I'll have a lot of opportunity to adjust. I started this post back in April and finally finished it up.

* * * * * 

This morning as I sipped my coffee on my train ride to Boston, I found myself in my electronic notebook, which took me to a post I wrote about my friend Carolyn who died a year ago, and then to her blog, and then to this post about anger.

I also wrote about anger and cancer, when I emerged from chemo two years back, and a lot of what I wrote then, remains true. One of the great ironies of cancer is that the cliche of daily gratitude which I always feel should come naturally, is sometimes harder to discover under the cloak of cancer. You feel you should be thankful for all the little things; but those little things can set you off - not into some rage or deep depression -- but into a funk - a destination that I sometimes find myself in, and often wonder what train took me there. 

The state of gratitude, I think, is a transient one -- hard to notice, and harder still to grasp. Like a fleeting light dancing around in the background, waiting to be noticed. Glennon Melton aptly describes it on her Momastery blog. The problem is that cancer is like a shadow that blocks the light. You have to look around it, through it, over it to see past the anger, the anxiety, the unfairness to glimpse the gratitude that's hiding off and on in those bright flashes. 

Fear and anxiety are two of the uglier heads of this ugly multi-headed beast known as cancer. I've seen how anxiety can paralyze people and all but take away their life; it's a scary thing. Anxiety feeds on doubt and uncertainty, and fuels fear. It lives in the idle moments and threatens to block out all light. It takes work -- hard work -- to see past it because no matter how busy you make yourself, there are always quiet moments when your body is still but your mind is overactive. 

Getting my mind to rest remains the challenge. Now, nearly four years post-diagnosis and two-plus years post chemo, I'm working hard to see the light that is so often there. It's there in a quiet ride home after a hard soccer game, with Matthew asleep in the seat besides me. It's there on a walk through Boston in this well-deserved spring. It's there in Noah's smile as I sit on the grassy sidelines of yet another soccer game.

Too often we set the bar of expectations so high that we all but guarantee disappointment. We want the perfect day; the perfect weekend; the perfect vacation. Those don't exist except in fiction and in memories. Unless that is, we recognize that a perfect day is full of imperfections and what makes it perfect is not the flawlessness of the day but the small moments of perfection that pop up throughout it.

The challenge is not in seeing these moments, these glimpses. It's in being in a state of mind to receive them. 

Sunday, February 1, 2015

Happy Chemoversary

I've had this day circled in my mental calendar for a while now. 

Two years since my last chemo.
Me, two years ago, celebrating
the end of chemo
 The deal with follicular NHL as we all know is that it comes back, sometimes quickly, sometimes years from initial treatment. I'd like to be in that latter category, thank you very much. In fact, I'd be fine to be an outlier. For some cancers, there's a statistical significance to how far out you are from chemo. I'm not sure that applies as much to indolent lymphomas such as fNHL but it still feels good for the visions of chemo to fade further away in the rear view mirror.

And while I'm not much for artificial milestones and there's nothing really differentiating this Sunday from any other (save a big football game in a couple hours),  getting to two years post-chemo and still feeling good -- well it felt like some hill that I needed to climb.

Nothing has changed, except that I now will only see my oncologist  twice a year, instead of quarterly. But having crossed the threshold seemed at least worthy of marking here, and with my most consistent health affirmation -- a nice winter's run along my favorite local route.

That accomplished earlier today, it would be a nice cap to have a Super Bowl victory too. But whatever happens in tonight's game, it's still a good day.


Sunday, January 25, 2015

A Break From Cancer

Hello blog world. It's been a while since I posted. It seems that the further I go between posts, the harder it is to get over that inertia and post one. So here are some thoughts that have been bubbling up over the last couple months. 

Within a  year or so after I started working at Dana-Farber, a colleague of mine left. She was a cancer survivor who had been there for a long time and, as she said, she needed a break from cancer. I get it now. 

Beyond the challenge of having reduced tolerance for anything less than maximum effort on the part of my colleagues, working at a cancer center means I'm surrounded by cancer news. 

Often sad news. 

Between reading this beautiful blog and the sad but inevitable news of sportscaster Stuart Scott, I've been thinking a lot about mortality. Not mine, necessarily. Just mortality, in general, and how it can envelop us, particularly those of us who work for a cancer center. 

News that a patient we know has died often seeps in to our offices, filling the cracks between meetings and in-box messages, hovering over our department like Eliot's yellow fog and slowly settling heavily on our hearts. 

When I read the blog post that Jesi's mother wrote about Bringing Jesi Home, I'd been following her story and I could feel her family's loss through my screen -- could feel it so much that it hurt. 

And I thought of all of these beautiful patients we hear of --  people we've met through emails and conversations, through interviews and photo shoots, through videos and tv appearances.  Kids like Avalanna and Rayquan and Karina and Jesi, and now Fernando, who I mentioned a year or so ago.  They're  graciously shared their stories for us, with us. And if we're feeling this pain; what grief must their families and friends possess? 

It leaves me feeling utterly, utterly powerless. I truly believe that we're doing great things here, and at many cancer centers. But the foundation for new cancer treatments isn't being built in my office. And in fact, tThe connection between what I do and affecting some change in cancer mortality is beyond tenuous.

But if I'm going to pursue my editorial career at a cancer center, it seems like I have only two choices. Give up and go home; or redouble my efforts and remember that through our work, we can make a difference. 

We can share information and stories, that at least in some small way helps cancer patients or their families. And by talking regularly about these topics, by raising the volume of the cancer conversation, we can bring a little more attention to cancer research and discovery, we can ever-so-slightly help advance the cause.

This is the only rallying cry I can raise when the news hits us hard.  It's one I hope everyone working at any cancer center shares.