Sunday, December 27, 2015

Taking Time to Take Care of Mental Health, Too

I've had a lot of ideas bouncing around my head for a post but the problem is, I can't seem to perfect the post in my head so it rattles in and rattles out and the page sits empty. The challenge of being a writer who blogs -- as opposed to someone whose blogging and writing career started simultaneously -- is, as I've told my therapist (more on that later), that I can obsess over the writing instead of just writing. 

Most of the ideas that have bubbled under my idea volcano have been about mental health.  I started seeing a new therapist about a month or so ago. Well, new might be stretching it as it implies that I was seeing a therapist before. I was, but I wasn't. I sort of saw Dr. F occasionally when I was first diagnosed, but only in conjunction with another appointment and that was, at best, once every couple months. To complicate things, we both work for Dana-Farber, so I would see her increasingly in co-worker settings, making the patient/doctor roles a little awkward. Although I haven't seen her in a patient-doctor role for probably two years, ironically, it was working with her in my communications role that made me realize that I really needed to see someone. It's not that I'm not fine. I am.  I just think I can be finer.

There are times, even surrounded by cancer as I am at work, when I don't think about having cancer; there are times when I can't even recall how long it was since I did chemo. (Three years, I looked it up). But that distance doesn't mean that cancer isn't still part of me. It may be below the surface; but it's there and it's real. Sometimes the enemy you see is easier to deal with than the enemy you can't see. That's part of the reason that it can be challenging to move from treatment to "after treatment." To those looking in, that seems preposterous. You're done. You're finished. You should be celebrating.  So just at the time that you're probably most in need of mental health help, you may be most likely to tell yourself that you don't need it. That you should be moving on and closing that chapter in your life. So, if you're like me, you do nothing and that lack of action can make you feel powerless while cancer lurks.
A lot of patients talk about being angry at cancer. But I wasn't just angry at cancer. I was getting angry at myself for being angry at cancer. I have no right to be angry, I thought. I have the "good" cancer, after all. (Repeat after me: There is no good cancer.) I was feeling fine. I wasn't in treatment any more. There were no lingering effects that so many patients suffer from - no neuropathy, no lymphedema. I should just suck it up, stop complaining and move on.  

Move on.

Moving on doesn't just happen. You don't shake off your cancer diagnosis like a winter cold. The diagnosis stays with you long after the chemo has left your body. That can wear you down. You may look fine and even feel fine, but inside it's peeling away your emotional skin and leaving you exposed.

We at Dana-Farber write often about the mental health of cancer patients -- and we are fortunate to have a very strong psychosocial oncology group. But I think many patients overlook, under-think, and even undervalue the importance of taking care of their mental health. Some times we are so focused as patients on treating the cancer that we forget that we should be treating the patient -- and that's not just the body but the mind as well. That's why I started seeing my new therapist, three years post chemo. 

Sometimes I feel a little silly sitting in my therapist's office. Part of it is because unlike my appointments with Dr. F, this feels like real therapy, like something that's not just tacked on to the end of another appointment, but therapy with a purpose. And part of it, too, was  because I felt better about my mental health almost as soon as I made my first appointment. I felt like I was finally doing something and that gave me the slightest hint of control. And if we know anything about cancer, it's a disease that is completely out of control.

What Dr. D's sessions have done so far is to raise my awareness. At first it seems counter-intuitive. It's gotten me thinking more about cancer when every instinct tells me that if I want to feel better, I should stop thinking about it. But thinking about cancer is not the same as worrying about cancer. 

And thinking about -- and gaining tools and understanding about  how I think about it -- in the controlled setting of Dr. D. or any qualified therapist should be a routine part of ongoing cancer care. 

Sunday, July 5, 2015

10 Things I've Learned From Cancer: Part 3

It was four years as of last Tuesday (June 30) since I sat on the phone in my car in the parking lot of the doctor's office, breaking the news of my diagnosis of follicular non-Hodgkin Lymphoma. About two years later I wrote this post about what I've learned. That proved fairly popular so I also posted this addendum a few months later. Without looking back at what I wrote then, and with the benefit of a little time and distance, here's a new take on what I've learned in the ensuing four years.

1. Time helps. It would have been inconceivable to me three years ago to think I would not remember the day of my diagnosis. But that's what happened this year; June 30th came and June 30th went and it was only in the writing of another entry that I realized that the milestone day had passed. So, particularly for those of us with so-called indolent, slow-growing chronic cancers, time does indeed help. Our flexible little minds adapt to the intrusion into our identity that cancer creates. 

2. Cancer may redefine you, but it doesn't define you. There's no single right reaction to having cancer. Some people acknowledge it openly. Some become advocates for their fellow patients. Some all but ignore it. It doesn't matter how much or little of your daily life cancer becomes, it will always be a part of who you are, but it will never be the sum total of who you are. 

3. In numbers, as in all things, moderation is good.  I love numbers, except when it comes to cancer. And the cancer world is populated with numbers. It's hard not to focus on the statistics that come crashing in, wave after wave. Some numbers can inform. Too many can overwhelm. As in all things, except ice cream, moderation is key. 

4. People should be generous with their empathy and stingy with their opinions. Unsolicited opinions about similar experiences of great-grandfathers, second cousins, friends of brother-in-laws? Don't  need 'em. Latest online fad about paleo diets or juicing or ph-balanced diet or whatever? Don't need those either.  Please... for the next person in your life who is diagnosed with cancer and you don't know what to say; if you should, call, or text, or email or post on their Facebook wall... send them one of these cards from Emily McDowell.  

5. Which brings me to: Humor is important.  I wish more people would joke about cancer. Really, I do. 

6. Of all the vices of the Internet -- phishing and malware, propaganda and porn, online bullying and cyberstalking, you name it -- I  think bad health information is among the worst. There is crazy, crazy stuff on the Internet that can penetrate your rational brain and hit you in your irrational core -- particularly at 2 am.

7. Working at a cancer center is a mixed blessing. In many ways, I'm a lot more knowledgeable about cancer and the workings of a cancer center than I would be if I hadn't spent my last seven years directing content at Dana-Farber. But I'm also a lot closer to a lot more stories of patients who don't survive. 

8. Too many people get cancer. It was President Nixon who declared a war on cancer back in 1971. That's 44 years ago! I know we've made a ton of progress and cancer researchers and doctors are miracle workers. I know we're better at diagnosing and it's probably true that there are more environmental carcinogens that are fueling cancer now. All of which drive up the rate of cancer. But still, there are just too many people getting cancer.

9. You have to find your own path to sanity.  Talking is good. Therapy is good. Creativity is good. But my path is a two-lane road of writing and running. Both activities have been part of me for just about forever; they've become increasingly important since my cancer. As long as I stay in either lane, I'll keep driving toward peace of mind. 

10. Life keeps teaching you if you want to learn. I cheated and looked back at the first two posts of this variety and my list now is different than my list back then. I still agree with what I wrote, but would add these on. So I guess I'm still learning. 

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. 

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.