Wednesday, January 30, 2013

On the Eve of Round Six - Gratitude, Take Three

Work's been busy. One of the logistical challenges of treatment is that every four weeks, my work week is truncated, creating a traffic jam of meetings before and after. I started working on this post on Monday am, but am just posting now.

There are moments when I'm so in love with my life that it feels impossible to contain it. It's not due to any dramatic life event or sudden stroke of good fortune, but just a clarity of perspective that opens up as if two large hands have pried apart a blanket of gray clouds and brilliant sunshine reveals itself to me.

It's what Glennon Melton writes about when she talks about kairos time  -- these moments when time stands still and I'm overwhelmed with gratitude.

Sunday morning, 11:30. Driving over the bridge that spans the Barrington river on my way home from my weekly run and chat. Thinking back on a weekend that included a Friday night date with Noah to see an elementary school production of Jungle Book; a competitive effort by Matthew's U11 soccer squad; a visit with my youngest niece and family; a family dinner out to an old favorite restaurant. One of the better Saturdays in a while with a whole relatively unplanned Sunday spread out before me.

Tuesday evening, kids bedtime. I'm showing Noah a new app on my iPad (iJot, if you were wondering). He's hovering over my shoulder and I can smell the remnants of kids' shampoo in his hair. He draws a three-dimensional shape but is eager to show me what he's done to his room, so he leads me upstairs to show me not just that he's cleaned his room, but that he's hung pieces of his elementary school artwork from the ceiling with painter's tape. What he most wants to show me is the process: how he used his bunk-bed ladder to reach. And what I love, more than the end result, is watching how proud he is of doing it.

I've written before about the cliches and expectations of perspective post-cancer diagnosis. I don't believe it suddenly makes you a nice person; I don't believe it makes you appreciate every minute as you never have before. But I don't remember having these moments of gratitude with such clarity. Maybe the feeling is not new at all; maybe it's just a greater awareness of it. Either way, I'll take it.


Friday, January 25, 2013

A Tiny Rant: Gratuitous Cancer on Television

I've always been a fan of The Amazing Race, which is incredibly in its 22nd season. If you're not familiar with the show, it's a reality show where teams of two compete in an around-the-globe scavenger hunt. In the early days, it was an interesting mix of cultural awareness and ugly American. As its sought to outdo itself from season to season with improbable duos competing, it seems to be shopping for its cast of characters from Stereotypes-R-Us.

Among the underdog teams competing in the past, there have been couples where one person was a cancer survivor. But this season's cast includes a team with not just one, but two cancer survivors.

As a cancer patient who works at a non-profit cancer institution that counts on the generosity of donors, there's certainly a part of me that is grateful to see the cancer survivors (if we are going to use that word) competing. For one, it's a grueling kind of race and this has the potential to show that cancer survivors come in all shapes and sizes, abilities and disabilities. But I'm sure that the team will be cast as the underdog in a root-for-us-because-we-are-going-to-try-despite-our-cancer kind of way. I'm sure the cameras and close-ups will convey a sense of "Oh, wow, look at them walking and running... and they have/had cancer!" That's the identity that I would suspect many cancer survivors would be happy to avoid.

There are 13.6 million cancer survivors in the US. For some, the disease is incapacitating; for others, the treatment is almost equally debilitating, at least for periods of time. But for all of us, I suspect, we face the challenge of not letting the flood waters of disease wash away our identity. To borrow from a friend of friend, we don't want to be known as "the cancer guy" or "the cancer girl."

There's an inherent hypocrisy in a cancer blogger making that statement. I recognize that. It's akin perhaps to a comedic actor with dozens of starring comedic roles complaining that no one sees him as a dramatic actor. The navigational identity we face is allowing cancer into our lives in a way that we can control -- we need to man the floodgates, as it were -- so that it joins with the rest of us and becomes simply a part of who we are.

There's another prime-time show that has had cancer as a major story line. Parenthood, the well-done drama, a features a young (early 40s) mother with breast cancer.

I used to watch the show often, but haven't seen any of the season with this plot line. But the show has tackled some strong topics in the past and typically does it thoughtfully and honestly. For those of you who have seen the show, I'm curious how true to reality the depiction of breast cancer has been. Sensationalist stereotyping to boost ratings? Or honest portrayal to raise public awareness? I fear the former with all its trappings of circus side show, but hope for the latter.


Sunday, January 20, 2013

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

Wednesday, January 16, 2013

A Morning Run

Next week marks one year since I've returned to Dana-Farber after my brief time away. And yesterday I did something  that I haven't done in the time since I've been back; I ran before work.

Working in a large hospital setting offers some advantages. In this case, it means that I have access to a small men's room with a few lockers and a shower. Given that I have  a 75-90 minute commute, the ability to shower at work is critical. It means, among other things, that I don't have to run at 5 am in the morning, and that I get to run in Boston. However to make it happen, I do have to get up before 5 am.

The path that runs alongside the water. My
 run was before it was covered with snow
When I was training for the Boston Marathon back in 2010, I would do this 2-3 times a week. But with one week of four being shot, I haven't been able to get back into the routine, and with only one more round of chemo to go, the temptation has been to wait until after chemo's done.

But, as I wrote the other day, I don't want to put things on hold, put life on hold, waiting for some milestone. There is always another obstacle in the way - a busy week at work, kids sports or school events, a cold, the snow. Life doesn't roll up the delays and roll out a red carpet with an invitation to begin something new. Sometimes you just need to overcome the inertia and start. I felt rested on Monday so I went to sleep early and the next morning, I ran.

Sometimes the best part of any run (to adapt from Dorothy Parker) is to have run. Sometimes I run to justify ice cream. But sometimes, like yesterday, I truly enjoy the run. While daylight forced itself upon a reluctant dawn, I made my way along the paths that wind through the Longwood Medical Are and Jamaica Plain -- the trail follows a small waterway and took me toward, and then away the building rush hour traffic. My legs felt fresh; my lungs felt fine in the brisk winter air. Headphones on, I passed a few fellow runners and the occasional dog walker. I wasn't running at any fast clip, but speed wasn't the objective.

The goal was just to run.


Friday, January 11, 2013

What To Do When Life Happens

Among the various pieces of well-intended and often quickly accepted pieces of advice given to me -- and I would guess many cancer patients --  is this:

Take time to focus on getting better.

It's usually paired with other offers, as in: Don't worry about that project. Just take time to focus on getting better. Or, don't worry about gaining weight. Just worry about getting better.

And the intent is clear and well-meaning. It's an offer to take one helping of worry off of a plate already heaped full of cancer-related worries. Importantly, it's also an opportunity for people, who often feel as helpless as the patient, to actively help; to do something even if that something is simply pickup up the slack for a project, or an obligation.

I've both profited from and offered up this type of help. But there's a dark side to the bargain. Life doesn't stop just because you do. Sure, you can schedule a trip to Disney so it falls during the most optimal time. But you can't schedule all the elements of  life around cancer. You can try. But daily events will keep on keeping on. Kids' homework will continue. New projects will arise at work. Practices will get scheduled, games will get played. School plays will be performed. Snowball fights will happen. Holidays will happen. Life will happen.

Suleika Jaouad writes about  Life, Interrupted on the New York Times Well blog. It's about the particular challenges that she, as a young adult faces, when cancer interferes with her life's normal trajectory. For many patients, there is little choice -- life does have to be put on hold even as it careens on all around one. I'm lucky in that my treatment produces only mild effects that have been limited to a few rough days a month. There have been no surgeries, no hospital stays, no isolation  watching the world move on. For me, though, the roughest part of my foggy fatigue funk has been the effort to stay connected -- to the daily routines, to the ebb and flow of office work, to life. At times, it seems like it would be easier to just crawl up and sleep through the day -- but I'm not willing to concede two days a month. I'm not going to give my cancer that.

Instead, I find ways to stay connected as life whizzes on. I meet the school bus at the end of the street; I watch sports on tv with the boys; I respond to emails. And If the fog permits, I blog.

I'm grateful for the support of my family and friends and colleagues. It would be all but unbearable to go through diagnosis and treatment without it. But while being a patient has taught me that it's okay to ask for help, and to accept the help that's offered,  I can't put aside the beautiful mundane events that make up my days and weeks to focus solely on getting better. I'd miss them too much.


Tuesday, January 8, 2013

And Then There Was One


Most clinicians and patients will tell you that exercise is an effective and important way to manage chemotherapy side effects. The question always is: how much? After five rounds of trial and error, I feel like Goldilocks. I think I've got the amount of exercise just right.

Instead of limiting my post treatment days to a short walk, this go round I managed a slow, short run -- maybe 1.5-2 miles -- on both Saturday and Sunday mornings. As a result, my usual miserable Monday was much more manageable. Even more so than last month's round. And my Tuesday was all but normal. I'm not sure if that's a direct result of the more active exercise on the weekend, but it's the only variable I've changed so I'm going with it.

I'll take that information into next month's final round -- hoping it's the last time I'll need that knowledge for a long time.


Saturday, January 5, 2013

Blog of the Year Award 2012

With thanks to Andrew at My Lymphoma Journey, Thinking Out Loud has been nominated for a 2012 Blog of The Year Award.

I'm pleased to hear that, but even more pleased that the blog has proven to be exactly what I needed for navigating my cancer journey. When it began as a private space to jettison the baggage that was weighing me down, it was immensely therapeutic. It remains that - and even more important for me now as I finish up by chemo treatment plan (only one more round to go!) - but it's been immensely gratifying to see and hear (via comments, emails and other communications) that it's been helpful for others who are diagnosed, or have friends and family that have been diagnosed. I hope that continues in 2013.

My favorite blogs for 2012 are varied -- sometimes very self-focused -- and only a few relate to cancer. Here are some, I'll call it my Eclectic Eight, oops, make that Nine in random order.

1. My Lymphoma Journey - I love Andrew's blog because of his outlook, and his extensive posting of other blog links of interest. I followed many of his links to great information. And I would have nominated him WELL before he nominated me if I had known about it.

2. Momastery - I don't think there's a person out there with a bigger heart than Glennon Melton and her band of Monkees. I love her humor and her philosophy. She has more faith than I do, but that never stops me from appreciating her bruitful honesty and approach.

3. A Little Peace of Paper - My creative talent starts and stops with words on the page. Stacy's extends to the 3-dimensional world and her creative talents put a smile on my face. Okay in the interest of full-disclosure, we are married but still, all bias aside, it's a great little blog.

4. Life Interrupted - Suleika Jaloud writes with honesty and emotion in her beautiful blog about a young adult whose life was just beginning when cancer interrupted.

5. Fenway Reflections - If you're a diehard baseball fan or if you want some great perspective on Boston sports, Saul Wisnia's blog is for you. This sports-writer and multi-book author's blog offers great takes on current events and historical context.

6. Floatsam of the Mind - Cynthia, I might make it my resolution to read this more often. It's a lighter side of my basic rationale for my blog (thinking out loud) and it gives me a chance to smile and see your photography!

7. NIH Director's Blog - I've stayed away from corporate, institutional or professional bloggers for the most part (otherwise, I'd be obligated to list Dana-Farber's Insight) but I started following Dr. Francis Collins blog recently and it's informative and intelligent and worth reading (and very professionally done.)

8. Well Scituated - Another creative outlet for me, Jess' is a talented designer who is turning her talent to momhood and her beautiful baby Ainsley. As a kindred creative, I liked her design thoughts and look forward to the blog's migration to momhood!

9. Martin's Musings - I don't know if the genesis of this blog is from Martin's Moments back at our day's working together at Melcher St. but it's evolved into a fun and interesting read.

There they are, my Eclectic Elite 8 er, 9. Hope you enjoy them.

p.s. the Rules follow

“The rules for this award are the following (applies to all nominees):
  1. Select the blog(s) you think deserve the ‘Blog of the Year 2012’ Award
  2. Write a blog post and tell us about the blog(s) you have chosen – there’s no minimum or maximum number of blogs required – and ‘present’ them with their award.
  3. Please include a link back to this page ‘Blog of the Year 2012’ Award – and include these ‘rules’ in your post (please don’t alter the rules or the badges!)
  4. Let the blog(s) you have chosen know that you have given them this award and share the ‘rules’ with them.
  5. You can now also join our Facebook group – click ‘like’ on this page ‘Blog of the Year 2012’ Award Facebook group and then you can share your blog with an even wider audience
  7. As a winner of the award – please add a link back to the blog that presented you with the award – and then proudly display the award on your blog and sidebar … and start collecting stars…
Unlike other awards which you can only add to your blog once – this award is different! When you begin you will receive the ‘1 star’ award – and every time you are given the award by another blog – you can add another star!
There are a total of 6 stars to collect. Which means that you can check out your favourite blogs, and even if they have already been given the award by someone else, then you can still bestow it on them again and help them to reach the maximum 6 stars!”

Tuesday, January 1, 2013

New Year's Day 2013

It's been nearly two weeks since my last post and I've been reflecting about a post about thankfulness, and a post about New Year's Resolutions. But I kind of like last year's resolutions so I'm not going to mess with them, and I'll return to the thankfulness post in the next week or so. In the meantime, this New Year's Day I've been contemplating this question:

What is luck? 

Amidst the superstitions, traditions and wishes for good fortune in the New Year, I'm wondering: how will I know if they worked? How will I know if the good things that happen in the year are somehow related to the good luck charms I attempted to bestow upon myself, and if the bad things that happened are the result of a lack of concerted superstitious effort? 

When it comes down to it, I have a hard time believing that any special foods eaten on New Year's Day, anything we say, or any black cats we avoid has any bearing on the events that transpire. If we truly believe in luck, then by definition, we can't influence it, can we? Luck is after all simply the result chance.  

That is, it's random. 

And if it's random, it's unaffected by previous events and no number of rabbit's feet or broken mirrors can affect it. It is, by definition, "the absence of any cause of events that can be predicted, understood, or controlled"

If, on the other hand, we don't believe in luck, then what shapes the events that unfurl?. Are they fated events, predestined by an omnipotent being or a pre-programmed universe? If that's the case, then once again, they are unaffected by the tiny actions of crossed fingers and knocked wood.

Or is the future unplanned and unfolding second by second based on the nearly infinite actions of  all living things?   (Isaac Asimov's Foundation trilogy is a must read for any science fiction fan, and has an interesting take on this.)

Regardless of your philosophical and theological bent, perhaps a more relevant question is: How do we differentiate a good year from a bad one? 

As I look back on 2012, I can find lots of signs that make me want to wish for a "better" 2013. It started with the end of an ill-fated new job and included two trips to the ER for Matthew and the beginning of chemo for me. But the end of the "new" job meant an opportunity to return to a new, old job; the ER trips for Matthew were isolated events that created some inconvenience but no lasting issues; and the chemo for me, well, that could mean the beginning of a long period of watching and waiting. And on top of that, our year ended with a magical trip to Disney followed by a wonderful New Year's Eve with great friends.

Bad year or good? 

It's easy for  me to cast the decision in the context of a personal outlook (the glass is half full or half empty). But in truth, I think it's more complicated - a balance of good and bad that teeters from side to side, year to year.

And as I sit here in my comfy, warm living room on this cold winter's day, listening to music while the boys play video games and Stacy putters in her craft room, it's hard to complain despite the challenges we've faced this year. Every year is filled with its moments of greatness, of pure happiness and gratitude, like this one. Sometimes they're so tiny, so fleeting that you can miss them if you don't pay attention. But they're always there.  

Every year is also filled with obstacles --  moments that lead you to the overwhelming question: why me? It's a pointless question. The answer doesn't have any impact on the result. Why do I have lymphoma? Beyond the biological and medical importance of knowing the physical causes, knowing why I'm the lucky recipient of lymphoma cell doesn't matter. 

So where does that leave us? Do we abandon superstitions, traditions, and well wishes? Do we create a spreadsheet to tally up 2013's successes and setbacks? 

No and no. 

It's New Year's Day 2013. I'll still have my helping of sauerkraut today and wish for good luck.  And rather than count and categorize the moments that 2013 brings me, I'll simply experience them, hoping there will be more joyful moments and less hurdles. More good news than bad. But whatever it brings, I will be thankful for being able to face the challenges and enjoy the bright spots with the support and love of my family and friends -- and I'll remember how lucky I am.

Happy New Year everyone. Hope it brings you health and happiness.

 p.s. Why sauerkraut on New Year's Day? I'm not sure but a little Googling may point to an answer here.