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.

--Michael

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

The Post-Chemo Commute

I tend to walk fast.

I like to think it's the New Yorker in me, but the truth is, I'd probably walk fast if I was in Savannah or Key West which are about the strolliest place I can imagine. When I'm taking the train to work, as I do most days, the walk from the Back Bay station in Boston to the Copley Square T stop is about 4-5 minutes. After a two-stop T-ride, the walk on the other side is a little bit longer, about a half mile from Kenmore to my office. That's 7-8 minutes on a good day.

Up until the other day, about my only commuting concerns were whether the train would be on time, and if the wifi would work. On the Tuesday after chemo, though, I remember coming up the escalator at Back Bay and walking slowly out of the station and pausing. 

I could see my destination, but the thought of walking there was daunting.

The walk from Back Bay Station
 (at very top  left of image) to Copley T
 Station (behind the camera). The Boston
Public Library is the building at right.

I sighed and began my slow trek. Speed walking commuters passed me on either side. Small children passed. People on crutches breezed by me. Tortoises, snails...  you get the idea.  I eventually made it to the T and to Kenmore where the prospect of a half-mile walk was nearly overwhelming. 

It was more mentally taxing than physically challenging. Two and a half years ago, I ran the Boston Marathon in 4:09 (take that Paul Ryan) but  now the thought of a slow half-mile walk was making me pause. Literally. That's a bit demoralizing. 

Stacy suggested I take a cab in those situations. But of course, I couldn't do that. Why not? Well, you know why,  So I trudged to the office slowly and settled in. That was Tuesday. Wednesday, I worked from home. Thursday and Friday I drove.

Part of the Hubway bike station
across from Back Bay. They ride
like trucks but beats riding the T.

It's now two weeks since that challenging commute and I've been back to both the train, and for the past week and-a-half, my brisk walk commute.  I've even ventured back onto my Hubway bike on several days. And this past Sunday, I returned to my favorite routine, a morning run and chat. (Thanks Mr. B.)  I may not be ready to tackle a marathon (maybe there's a half marathon race in the future), but being able to go out for a 3.5 mile run at my normal pace was important.

Beyond the joy that I get in running, it helped me reestablish my routine. We all know kids crave routines, but I think they're equally as important for adults. They help define normal. And when your normal is turned upside down with the new routine of cancer treatment, the return to the old normal is something to appreciate. Knowing too that I'm able to bounce back to this will help me deal with the malaise of the first week post chemo. I'll have the wonderful boredom of a normal routine to look forward to.

-michael

p.s. - I have no interest in running for office....ever. But in the interest of full disclosure, I believe my official BAA time in 2010 was 4:11. I stopped for about 2 minutes to wait to use a port-a-potty and don't include that in my personal time recording. I ran a 4:09 and I'm sticking to it.