Friday, July 26, 2013

A Cancer Survivor at Two Years: Some Goals

In December 2011, six months after diagnosis and months before this blog became public, I wrote a few New Year's resolutions. Keep learning. Keep anxiety in check. Accept people for who they are. That's the summary. 

It's been a long two years and in most ways, I feel like the same person I was two years ago, and yet, I feel like I have one more layer to me now than I did before follicular lymphoma was a regular part of my vocabulary. There have been far more good times than not-so-good times -- kind of like life -- and I couldn't have made it through with my sanity in tact  without my old friends, my new friends out in the cancer blogosphere, my care team, my family, and, most critically, Stacy. 

As I said back in 2011, I'm not great about making resolutions (let alone keeping them) but as I move into year three of the epic, award-winning drama, "Life with Cancer," I thought it'd be interesting, maybe even helpful to set out some goals. 

As a baseball and soccer coach for a whole bunch of kids teams, I always tried to boil things down into easily remembered steps. The earliest list I had for Matthew, for example, was: Line up your hands. Line up your feet. Eyes on the ball. Swing hard.  I've probably said, "Step straight. Throw straight." about 10,000 times over the years. 

I've also developed what I guess I'd call a philosophy of coaching that can be summed up in four rules. 
  • Play Hard
  • Play Fair
  • Listen to Coach
  • Have Fun
That's it. Do I want soccer players to stay in position? Yes. Should baseball players swing at strikes? Yes. Hit cutoffs? Pass the ball? Clear it wide? Anticipate the play? Yes. Yes. Yes. Yes. But overall, those four rules are the most important principles to me. And it struck me the other day, they also apply to cancer survivorship. 

Living takes effort.  Sometimes we need to overcome the inertia to do things and not just talk about how we want to do things.  I don't believe in bucket lists or in simply accumulating experiences. But the flip side of that coin is: I don't want to avoid experiences because they're new, unknown, take planning, take effort -- that's what makes them experiences.

I know that I'm at my happiest and best when I keep myself busy -- with work and with play. So my goal is to live fully. To not back away from difficult things. To do things that I want to do, even if they're hard. Sometimes it's hard to get off the metaphorical and literal couch, but as we say in baseball coaches land, you can't get a hit if you don't swing at the ball. Play hard.

Life isn't always fair. No one equitably distributes opportunity, wealth, health, or box seats to the Red Sox. If life was fair, there wouldn't be 13.6 million cancer survivors. But just because life isn't fair, doesn't mean we can't live fairly. We can pick up our fellow survivors when they're down, not bemoan the bad bounce of the ball that led to diagnosis, and not begrudge others' successes. I don't need others to fail for me to succeed. Play fair.

I have a lot of ideas. Even more opinions. But apparently, so do other people. And often, their ideas are different than mine. Maybe even better. Their way of doing things may be different. Generally speaking, I'm not someone who seeks out conflict. But as comfortable as it would be if we all agreed on everything, disagreement and conflict can be the door to learning. And the way to open that door is to listen. Hearing people doesn't mean I have to take them up on their advice. I just have to listen.

When I go over the four rules with any youth team, I always leave Have Fun for last. Most kids have little trouble with this one; having fun is baked into most kids' nature. 

Sometimes, we can learn a lot from kids. 

Sunday, July 21, 2013

Some Post-Vacation Observations

I've browsed through my blogger list of blogs at times and have seen blogs where the last post was two weeks ago, or a month ago, and was sure that my blog would never be one of those. But here it is more than two weeks since my last post. So some random thoughts.

* To blog or not too blog: As I said to Stacy, it's a win-win situation. If I'm blogging, it's good because I'm writing. If I'm not blogging, it's good because I'm not thinking about cancer (or at least about my cancer). I believe that's the definition of optimism.

* I had coffee with a young woman who was recently diagnosed with follicular lymphoma. It was odd to be on the advice-giving side of the table. As I explained my experience with chemo, I was walking the fine line between nonchalance and been there/done that, and giving realistic expectations of what's ahead.

* Every once in a while it's good to just read the comments on the blog. It's a good reminder that there are a lot of people who are dealing with the same issues, and thinking the same thoughts.

* If I haven't mentioned the blog LymphoBob before, I am now. He is a follicular lymphoma blogger, always knows what's going on in the fNHL research world, posts frequently, and, to top it off, is a Red Sox fan and quotes The Princess Bride. The link here is to his post about survival statistics. He and I share the same philosophy, I think, on statistics.

* The somewhat prolonged absence from the blog was not all because cancer wasn't on my mind. That was part of it, but it was also because we were on vacation and I avoided all social media channels. No Facebook. No Twitter. No Blogger. No work email. It's good to disconnect every once in a while.

* Two years ago on vacation, I was a couple weeks post-diagnosis. Last year on vacation, I was two weeks pre-chemo. This year on vacation, none of the above. Here's hoping next year will be the same as this year.

Friday, July 5, 2013

The History of Lymphoma

Sometimes my work and patient worlds collide. Sometimes, I'm the one responsible for that.

Back in March, I went to my first lymphoma conference. It was a good conference, all things considered, and I sat in on an interesting talk about the history and current state of lymphoma. I thought it might make for good viewing beyond the conference.

Since Dr. LaCasce gave the talk, and since she's both my medical oncologist and Dana-Farber faculty, I asked her if we could put it up on Dana-Farber's Slideshare page.  She agreed. If you haven't used Slideshare before, it's a social media site for presentations. You can view presentations, or in some cases, like this one, listen and view simultaneously. (I'd recommend using Internet Explorer or Safari, though. It's not always smooth sailing on Chrome or Firefox, nor is it great on mobile platforms.)

Anyway, it's about a 30-minute talk and it's interesting, particularly if you have an interest in lymphoma. If you want the shorter summary, you can find that on the Dana-Farber blog.


Monday, July 1, 2013

Keeping the Cancer Card in the Deck

Two years ago, this is what I wrote.
And later, this...

Two years ago, yesterday, I heard my diagnosis for the first time. It's interesting to read my first two posts -- back when this blog was private. But there's nothing in that private post that I haven't said many times in this quasi-public space. But what's more interesting to me is that yesterday came and yesterday went and while I knew the date, I forgot its  significance. That's a good thing. It means I'm not living and breathing my diagnosis every day, which also explains why I'm not posting as frequently. If I had remembered the date I would have prepared the post I'd been planning about my goals for year three. Instead, this is the post I wrote yesterday...

* * * * *
Many times, I've played the cancer card in my head.

It usually goes something like this, "Ha, but if they only knew I was a cancer patient, survivor, whatever..." 

While there were a couple of times when I did voluntarily disclose my diagnosis --  when I had to cancel my dentist appointment, for example, or  when I had to bag out of a softball game because I was still tired from chemo -- it was only in the hopes it would ward off any further conversation. I suppose I could have simply said I had some "health concerns" but I'm pretty bad at being vague. Disclosing my diagnosis as an explanation of why I couldn't do something (get my teeth cleaned, play softball) gave it context, and, I suppose, helped cut to the chase. 

Last week, I had the opportunity for a completely gratuitous disclosure and I'm happy to say that I left the cancer card unplayed. I was giving a talk at a content conference and there was a perfect spot in my talk where  I could have inserted that I was not only a cancer communicator but also a cancer patient. It might have added a little shock value to the talk, and I was a little curious to see how the room would respond. Would they perk up with renewed interest? Or simply go back to discreetly checking their email while pretending to listen.

I never found out.  

There was little context to the disclosure and in the end, I didn't want to elicit any unneeded sympathy; I didn't want the perception of  my talk to be influenced by my health status. "That was a great talk ... for a cancer survivor."  No thanks. We may all need understanding from time to time, but we don't need pity.

A common theme I hear from people who are ambivalent about disclosing their diagnosis is that they don't want to be known as "the cancer girl" or "the guy with cancer." If the value of my talk is judged by my diagnosis, then by extension my value is defined by my cancer. I've touched on this theme many times in this blog. Once cancer enters your life, it unavoidably becomes part of you forever. And at times cancer can define your day or your week or your month, but it never fully defines you. 

* * * * *

The goals for year 3 post is coming, but if you have suggestions for cancer-related goals, please share in the comments.