One Year

How should I begin?

Do I celebrate?  Do I contemplate? Do I let the day go by unannounced, unnoticed, uninvited. One year and nothing has changed. One year and everything has changed.

I want to stay positive. But I want to admit that I hate having cancer. Hate that the illusion of certainty and security has been stripped bare and that I now know what everyone finds out -- that there is no certainty of tomorrow and we partake in a happy delusion most days. We eat right. We exercise. We don't smoke. We play mostly by the ever-changing rules. And we get cancer. 

I hate that. 

But then, I'm lucky. I know that.  I watch as friends try to manage the challenges -- physical, emotional, and logistical -- of treatment and I feel guilt for presuming to be part of the cancer club. I  think this is why I've resisted the occasional pull of support groups and lymphoma conferences. I at once belong and don't belong -- and if treatment is the ticket to the dance, I'll gladly stay uninvited for a long time. 

Indeed, I need to acknowledge how grateful I am - for everything and everyone that makes up my life and for where I was when I was diagnosed. I was diagnosed early and am able to watch as the insidious disease grows or doesn't grow. I have a team standing by, clinical weapons in hand, ready to douse the fire when it starts to burn. I have made it from June 30, 2011 to June 30, 2012 with only a few scans, office visits and blood work to endure. 

One year later and I'm in a good place.

There's no denying that a cancer diagnosis is a life-changing diagnosis. But how it changes you is up to you. It's not like the epiphany in the movies -- at least not for me. I don't suddenly spend every day treasuring every moment. It's not that I don't appreciate things just a little bit more, but each day is still each day, filled with its good moments and bad moments. What put a smile on my face BC still puts a smile on my face AC. And what bothered me BC has the same effect now -- if a little muted. One of my favorite mommy bloggers put it best in the post that went wildly viral (as in 247 thousand shares on Facebook and 58 thousand likes on Facebook) and catapulted her into the mommy blogger stratosphere. You can seize the day, but that doesn't mean you're loving every minute of every day. (Read her anti-carpe diem post here.)

If you're in the cancer business, you're assaulted with numbers. One year since diagnosis. Two years since treatment ended. Three months between visits. Six months between scans. Your afternoons aren't measured as much in coffee spoons, as they are in blood counts, measurements, averages. Do I want to hear the median survival rate? Do I want to hear how many years CHOP is effective? Or Rituxan? Do I want to hear success rates of Stem Cell Transplants, knowing that a success rate of less than 100% implies a corresponding failure rate? Can I just hear the good numbers? Are there any good numbers?

No, I don't want to know. Not now. There will be time yet for decisions and revisons that a minute will reverse.

It's a tricky thing, this number business. Once you have that knowledge, it creeps its way into your brain, slowly insinuating itself into your thoughts. It becomes difficult not to let it affect you somehow.

For now, I will let the numbers and the day go by. I'll work hard to not let cancer change me, let alone define me. And I'll  focus on other numbers -- on miles logged and Little League scores. Because one year and everything has changed. One year and nothing has changed.

--michael

p.s. One of my favorite poems is TS Eliot's Love Song of J Alfred Prufrock. Several lines from the poem have been borrowed (and paraphrased) for this post -- not because the poem has any relation whatsoever to the topic. I just always liked the phrases. English majors among us may spot them.

A Quick Question

As I finish up writing a post that I will publish tonight/tomorrow, I'm debating putting the link on my social media pages. FB and Twitter is an easy decision as I've posted about my blog there before. But what about Linked In -- I have about 200 "friends" on FB and about 500 contacts on Linked In -- many of whom are simply people who I've worked with or met via social networks, but some are more friends than others.

On the one hand, it seems like the wrong audience. On the other, there are probably people in that network who are in similar situations -- or who have friends who are in similar situations -- as I am. 

What do you think? Post a link on Linked In or not? If you have an opinion, just leave a comment. 

 

Who's To Blame?

Kevin MD is a respected web site and e-newsletter with a collection of interesting points of view, many from the physician community perspective. 

They had this post, from an internist and public policy wonk named Steven Schimpff, MD. In an interesting article about rationing and whether we need it, he argues the same points that many have argued before -- too much unnecessary testing when patient history and deduction would do (he doesn't address the issue of our litigious society and what happens when tests aren't done and outcomes are negative), too much unnecessary treatment at end of life when palliative care would do, and too much prescribing when lifestyle changes would do. 

Fine. 

It's this sentence, however, that pissed me off.

"As a society, we eat a non-nutritious diet and far too  much of it, we are sedentary, we are chronically stressed and 20% still smoke. The results are complex chronic illnesses like diabetes, heart disease, cancer, and stroke."

It's a lazy sentence that paints a way-too-wide brush. The results of such "bad" behavior aren't these illnesses. It may be a RISE in incidence of these diseases -- certainly there's a link between smoking and certain cancers, and some evidence points to links between obesity and some cancers, too. 

But there's also genetics at play. There are genetic links to some cancers, to heart disease and I believe diabetes (but don't quote me on that last bit... I'm not a doctor.) There's also a generation of chemicals and other environmental factors that have been permeating society that many would argue are part of the cause.

Cancer patients and survivors already spend enough time thinking, "What could I have done to prevent this cancer?"  We don't need someone pointing a finger at our behavior, too. I'll own up to being stressed - but I'm far from sedentary, have never eaten all that bad, and don't smoke. Sometimes bad things just happen.

Small Talk

Shortly after being diagnosed, Stacy and I talked about talking -- to the kids, specifically. We didn't talk about talking for a few more months, but that's a different post. And sometime last summer we had a conversation with them about it. Part of me was reluctant to do it, but part of me wanted them to know.

There was a decent amount of stress and worry around the house, particularly last July and they knew I was making a few trips to the doctor, had a little bandage on my neck. Something was up. And we wanted them to know what that was.

Between my psychologist, the Dana-Farber web site  and Stacy, we figured out a good plan to discuss with them. We'd explain that I had cancer, but there were a lot of types of cancer and they were all different. And my type, called lymphoma, also had a lot of different types (more than 50, if you're counting) and they were all different. So if they hear friends at school talking about cancer, or if they read about it in a book, or see it in a movie, they shouldn't think that's the disease that Dad has. It's almost definitely NOT that type. (There are very few plot lines that include a character with follicular lymphoma.) And most importantly, I was now seeing some of the best doctors in the world who did nothing but treat my type of cancer. They would watch it and when they thought it necessary, they would treat it. Our lives probably wouldn't be changing anytime soon because of the news - except that I might be making a few trips to Dana-Farber now and then. 

Noah had questions. 

Was this because of those bumps on my neck? Yes, those were symptoms.

Can I go play Wii now? 

Beyond that, there weren't many questions. And, here again, we run into the good challenges of being in  watch-and-wait mode; without treatment and any visible symptoms, the kids don't see anything different. So the issue has washed back out to sea with the tide of time. And we haven't brought it back onto the beach, so to speak.

A year later and I don't think it crosses their mind and we don't look for ways to remind them. There will be time and there will be a time. For now, let them worry about more important things - how to hit a fastball or how to deal with girls, for example. 

I'm still working on both of them.

Giving Advice

The DFCI Facebook page posted a question: "What advice would you give someone who was just diagnosed with cancer?" It generated more than 100 responses, which is good for the page.

I was going to wade into the comment pool but what I would say was already said - be positive, advocate for yourself, do your research, don't go online, lean on friends and family.
For a moment, I was going to paste a link to this blog because most of what people talked about there, I've talked about here. I decided against it, in the end, but I couldn't help wonder why this post generated such response.

Why do people feel so compelled to offer advice and counsel on this. It's well intended and there are some truths that approach universal, but some of what I would have said as advice is really just what works for me. Should everyone write about it? Probably not. Should everyone talk about it? What if the people you talk to say idiotic things that make you feel worse? Should everyone lean on friends and family? I suppose... if you have friends and family that can be leaned on.

So in the end, I read the posts. I composed a response. Then I deleted it.

---michael

ps - I might not post as frequently in the next two weeks as I'm working on a slightly longer post and that's been occupying my train time of late.

Charlie's Story

There's a great story that we produced about a young boy named Charlie. It follows the Mom, Caroline, and her four years of writing about -- mostly via email updates -- Charlie as he went through treatment for leukemia. 

http://www.dana-farber.org/Pediatric-Care/Treatment-and-Support/Patient-Stories/Charlie-Rider.aspx

One of my favorite parts (it's in part 1 of the four part series) is when Caroline writes about how for the first few months she expected every doctor and nurse to walk in and say, "Sorry. We made a huge mistake. Charlie is fine."

She said that it took about six months for reality to set in.

Seems about right.

But I think I will always hold out at least a sliver of hope that it's all a big mistake -- and I don't think that's just because I'm asymptomatic. It's just in my blood, which, in case you were wondering is B+. When we're creating publications at Dana-Farber, particularly our Paths of Progress magazine, we talk a lot about creating a tone that's hopeful and optimistic, but honest as well. It's a fine line. One person's optimism is another's rose-colored glasses delusion. And by the same token, someone's realism is another's melodrama or lack of faith. Who's right?  Most people -- myself included -- will extol the virtues of keeping a positive attitude. Some will point to the link between stress and the immune system and try to prove the connection between hope, faith -- whatever you want to call it -- and outcomes. But it's much simpler for me. If I'm going to accept reality, then I need to try to keep the worry at bay. Because every day that I spend worrying is a day that  cancer wins. So if that takes a little delusion -- a little belief that my next scans will somehow miraculously show an absence of enlarged lymph nodes -- I don't see anything wrong with that.  

New Video

Quick update. Dr. LaCasce re-did her physician profile. How she talks about how she practices is exactly how she does practice.

Eating Up Information

When I left Dana-Farber last July, I wanted to get away from a work environment of "all cancer, all the time." Now that I'm back, there are some informational advantages.

It's not that I'm uncovering new treatment options -- I leave that to my doctor. But as I continue to focus on more digital publishing, I'm finding more information on things like nutrition. I worked with our nutritionist to edit and publish this talk on slidesare: Fighting Cancer with Your Fork. And in the course of editing it, I watched it three or four times.

Some of it actually stuck.

I'm eating more fruits and vegetables -- although that's a challenge during the crazy spring sports schedule we follow -- and less processed food. And now, after watching this video from 60 Minutes, I'm trying to cut down on my sugar. 

For the longest time, I've been drinking my coffee with a splash of milk and one sugar. Funny thing. When I leave out the sugar, I actually like the taste just as much. Fortunately, chips contain no added sugar.

As Jamie Oliver would say, eat your veg.

Epiphanies

In the world of literature and movies, life-changing events (like cancer diagnoses) are served up with a side dish of epiphanies. Either done as a bargain with God or a self-made promise to enjoy life to its fullest, fictional characters vow to abandon a slew of bad behaviors. Smiles everyone. Music swells. Roll credits.

It doesn't happen that way. 

At least it hasn't for me. Part of it may be that my life-changing diagnosis hasn't changed my life all that much. But part of it is also that I don't want to change. At least not that much. It's imossible to appreciate every moment of every day of every week, especially if you're trying to focus on living life after diagnosis, just like you did before diagnosis -- except for the occasional visit to the oncologist.

There are some things that I am doing differently -- I'm trying to eat more fruits and vegetables, and less sugar, for instance. And as I wrote around New Year's, I'm trying to appreciate the kids for who they are more -- and maybe have a little more patience. 

But those are more resolutions than epiphanies. Maybe my perspective will change but I hope not. I am who I am and I don't need a cancer diagnosis to help me figure that out. 

Name Dropping

These days, I'm finding myself dropping the name -- or if not the name, the existence -- of my oncologist in casual conversation. It's almost a nonchalant mention of her, like I'm discussing my podiatrist or dermatologist -- as in, "I was speaking with my oncologist and she says..."

 I take this as a good sign.

Coming up on one year since my diagnosis, it's as if I'm no longer afraid of the elephant in my mind. I can talk about it openly. But then I realize, it may be a bit weird for other people to hear someone talk about "their oncologist." I'm not sure. Is it?

Silver Lining

For six years, I edited a monthly inflight magazine. As with many senior editorial positions, it involved little writing -- an occasional assignment that I'd take on but never really have the time to do the way I wanted to, or a short item that was easier to just write up than explain to another writer.

The one piece I wrote every issue -- all 72 of them -- was the letter from the editor. It was a place where I could frame that month's issue for readers; where I could write first person in a voice that gradually became my own. It wasn't award-winning (my column or voice); it wasn't experimental or innovative; but if you looked at the collection of letters -- particularly from the last couple of years -- you'd definitely say it had a common voice. We had a couple million people who read the magazine supposedly, but I never felt like I was writing to a large audience. I was just sort of thinking out loud about the issue and what it meant to me.

It was my first blog.

There are many reasons I decided to make the blog public. For one, I had come to the understanding that cancer may be part of who I am, but it doesn't define me. That was a gradual realization that came about through six months of discussion -- in essence, six months of practice talking about these types of things to friends and family, and through the blog. Before I flipped the public switch, I reread all the entries starting from Day One, my original post. As I did, I saw the tenor of the posts shifting -- going from what I'd call more of a diary to myself to where it is today, an opportunity to think out loud and frame an issue that's curling around my mind. 

I found my voice.

An optimist looks at the sky and sees the silver lining in every cloud; a pessimist sees the storm clouds on the horizon. Finding my writing voice is the lining of one of the clouds.