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." 

--michael

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:

10 Things I've Learned from Cancer

We are always learning. Sometimes more so than other times.

Nearly two years ago, I was diagnosed with cancer -- follicular Non-Hodgkin Lymphoma (or FL) to be specific. Until then, I thought I knew about cancer - having spent several years working as a director of editorial and creative services at Dana-Farber Cancer Institute in Boston. I met with cancer patients; worked with them closely on some projects; I walked the floors of the clinics; I edited stories about research advances; I was surrounded by cancer.

I knew nothing.

I spent more than a year watching and waiting. I spent six months undergoing a chemotherapy regimen known as BR (bendamustine and rituxan). It was comparatively mild -- both in terms of its side effects and its disruption to my daily life. I worked through it - literally, taking a day or so off each month to manage. I've had friends and colleagues spend two years in treatment; friends deal with surgeries, radiation, the works. And then when that was done, even more. What I had to go through was mild. But cancer's effects are not rated like buffalo wings -- mild, hot, and extra hot. Yes, there are different kinds, and some more serious than others, but any degree of cancer is hot enough. And any diagnosis carries its own challenges.

In March, I had my post-treatment scans, which came with the good news that I am now no longer in treatment. I watch, and I wait for my lymphoma to return, and when it does, we'll deal with it. In the meantime, here's what cancer's taught me.

1. Friends matter. They say it takes a crisis for you to know who your real friends are. I don't know that I believe that. I know who my real friends are; I knew that before I was diagnosed. Some of them were great at expressing their concern; some weren't. The fact that they weren't -- because they made stupid comments or ran away from the problem -- doesn't make them less friends; it just makes them poor at dealing with emotions. Who knows why? Maybe it drudges up bad memories, or bad anxieties, or they just are lousy communicators. All I know is that I know who my friends are and I'm grateful to have them and their support -- well expressed or otherwise.

2. I don't know of any study comparing the outcome of pessimistic patients versus optimistic patients or whether either group makes better treatment decisions. But I have to believe the optimists have a better quality of life. I've had my moments of anger, frustration, sadness, fear, and anxiety. I'm sure I'll have more of them. But they've been short-lived -- not because I figured out the answers, but because I realized that those emotions don't subtract from the problems, they add to them. 

3. I've never been big on prayer in the formal sense of the word. So it used to bother me when people would say: "I'll pray for you."  It doesn't anymore. Pray. Send positive vibes. Do a random act of kindness. Meditate. Run. Whatever. It all helps. I don't know how. I don't know why. But it does.

4. People who practice oncology - nurses, doctors, assistants, technicians, phlebotomists, schedulers, you name it. They are a cut above. The people who practice it on the 8th floor of Dana-Farber? They're a cut above a cut above. They bring a level of compassion, respect, understanding, and (and this can't be understated) knowledge to what they do that can't be measured.All of this gives you a sense of comfort and trust; two companions constantly needed on this journey.

5. Cancer takes its toll, and it's cumulative. It's not just a giant shock to the system on the day of the diagnosis, but a constant pounding of the shore wave after wave. At times, the waves are small, and the sand holds strong; at other times, they crash violently and leave the landscape changed by their effect. It takes time and energy to reclaim the land .

6.  Patients are just the tip of the iceberg. Family, friends, coworkers, caregivers - everyone is affected in ways small and large. For immediate family, it's doubly difficult. They face not only the impact of the disease and its disruption of daily life, but also the burden of emotional support. 

7.  To borrow from Glennon Melton, we can do hard things. We can face diagnosis. We can withstand the anxiety; we can manage the treatment. We may not want to do it. But we can.

8. Everyone's cancer is different. There are lots of male, follicular lymphoma patients out there. But are there many 50-year-old follicular lymphoma patients with the exact level of disease progression, with the same health status, the same mental outlook, the same molecular blueprint as me? No. So you can look at statistics and know that they are comprised of sets of cases that are all unique, even if they share some characteristics.

9. It's easy to find daily examples of cruelty and indifference -- just watch the news, read the paper. I've been amazed over the past two years with people's capacity for kindness and compassion. Not just to me but in the stories I've heard from others who have been admitted into this unfortunate cancer club.

10. Bucket lists are overrated. There are thousands of things I'd like to do in life. I could fill pages alone with just the places I want to go - let alone the events and sites that I'd like to see in those places. And that's not even adding in the geographically agnostic experiences I'd like to experience. But to me, life isn't about creating checklists to check off; to me, it's about experiencing what you have, where you are, and who you're with. That doesn't mean I don't want to see Barcelona vs Real Madrid in Barcelona, shag flies in Fenway Park, or sample Thai food in Thailand. I'd love to do all of those and a  thousand other things -- but I'm as excited to watch Noah pitch in Little League. Life's a journey not a to-do list.

-michael

Survivorship and Superstition

When it comes to cancer, there's a lot of confusion about a very common word: survivor.

Some define survivorship as five years of remission. By that definition, after five years of follow up with No Evidence of Disease, you are a survivor. Great. But what are you in those intervening years between treatment's end and survivorship's beginning?  A patient? A patient in remission?

Others mark the beginning of survivorship from the moment of diagnosis. Under those rules, once you know you have cancer, you are immediately a patient and survivor until you are no longer either.

And still others, mostly patients, avoid the term altogether for fear of jinxing the remission, not unlike baseball players and a no-hitter (a no-hitter is when a pitcher allows no hits over the duration of an official game). Baseball superstition holds that players never acknowledge the ongoing streak of hitless innnings, particularly to the pitcher working on the feat. If you've ever seen a no-hitter in progress, you'll notice the players keeping their distance from the pitcher as the game moves into the later inning. Even the announcers will often refrain from acknowledging it -- relying on graphics that show the score and the conspicuous zero in the hits column.

I don't think superstition holds much sway over genetic mutations and runaway cell growth, but I do find myself dancing around the term, and around the whole prospect of remission. A casual search of this blog doesn't turn up any posts with the word "survivor" in them (until this one, of course). Statistics would say that I have a good chance of years of remission; but then, statistics would also say that my lifestyle would give me a good chance of not developing cancer in the first place. And we know what my favorite author Mark Twain says about statistics.

When treatment ends in a few weeks, I hope that it marks the beginning of a long period of remission.  If I'm fortunate enough to throw up a string of zeros, so to speak, I'm sure I'll note the time that's passed. I just might not use the word: survivor. Why jinx it?

-- michael