Wednesday, July 1, 2015

I Used To Be Disgusted...

 'Tis the season. 

Not the holiday season but the season of end-of-year school activities. Beginning of summer fun. It's a chance to enjoy all the simple things that make summer great - longer days, sunshine and swimming pools, vacations and backyard barbecues, and seeing friends who we haven't seen in a long time. But cancer has a way of complicating even the simplest things.

Catching up with friends often brings the inevitable earnest inquiry: "How are you?" or "How's your health?"

The subtext of the simple question is: "I know you have cancer and I'm concerned (or maybe just curious) and you don't look sick but I don't want to presume and I I don't know how exactly to ask about it and since saying something like 'How's the lymphoma doing? Not acting up again is it?' seems inappropriate, I'll just ask: How are you? With emphasis." 

That's a lot of subtext. 

It's taken me a while to figure out how to deal with the question. It used to bother me quite a bit at first. There was one  friend who, if I hadn't seen him in more than a week, would ask that question, with particular emphasis. And to be honest, it would piss me off, like the very asking was an affirmation of the cancer that I was trying to ignore.  

Part of it, too, was that I didn't know how to answer. Sometimes I'd awkwardly say, "I'm good, how are you?" And sometimes I'd just blather on about when my next oncology appointment or next CT scan was: "Yep, I'm good. No scans for another year!"  But usually, I'd just say, "I'm good. I'm fine." And then try to change the subject as quickly as possible. 

I've been able to pivot, at least in my head, my reaction to the question.

Somewhere over the last four years, I cleverly realized that my lymphoma is going to be here whether someone asks about it or not. So I can understand now that, in most cases, asking about my health is nothing more than a concerned inquiry from a well-meaning friend. Being the friend of a cancer patient/survivor is no picnic, and people deal with it in different ways. Some avoid the topic. Some avoid the person. Others want to express concern and don't know how to do it. And others bravely venture forth. 

So next time someone who I haven't seen for a while asks, I'll simply look the person in the eye and say, "I'm doing great, thanks. And thanks very much for asking." 


p.s. -The title of the post comes from a great, old Elvis Costello song, or at least this phrase: I used to be disgusted. But now I try to be amused."  The song itself has nothing to do with the topic, but the phrase stuck in my head one run. Here's the song:

Thursday, June 4, 2015

Health, Mental Health and Quality of Life

I went for a run last night; the first one I've been on in 10 days. A week and a half may not seem like a long time, but it's the longest I've gone without running since I finished chemo in 2013. And if you know me, you know that I have two keys to good mental health: running and writing.  (These are also common themes which I've touched on from time to time on Thinking Out Loud.)

But over the last 4-5 weeks, my running has been a bit sparse. I'd been having some minor GI issues that have finally worked themselves out. I'll spare you the details but they were minor enough that they didn't outwardly affect my daily life. Still, they were  persistent enough to get in my head. Not every day, not all the time, but enough to occasionally distract me and take me off my game. In a month overflowing with kids' appointments, lawn work, and busy work schedules, it gave me one more thing to think about when I was debating whether or not to squeeze in a run. 

The bottom line is that it's hard to stay mentally focused when you're physically not well. My chemo regimen was relatively light compared to others, and the burden on my mental state was similarly light. But for those going through long lasting cancer treatment, it's not just the anxiety of the prognosis, but also what the treatment is taking away that weighs on the mind and sinks the mood. Add in a good deal of idle time for the mind to wander and it's a dangerous recipe. 

According to the National Institute for Mental Health, 16 million adults in the US, or just less than seven percent of American adults, had one major depressive episode in 2012. Given that there are about 1.7 million new cancer diagnoses in the U.S. each year (according to the American Cancer Society),  and millions living with cancer, I would imagine that there's a good overlap between the two statistics.

People in and around cancer often talk about quality of life. And that phrase often bothers me because I never can quite parse what it means. But whatever it is that defines quality of life, good mental health has to be part of the definition. 


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.