Thursday, December 12, 2013

Here's the Dirt: Cancer Still Carries a Stigma

The number one question lung cancer patients get asked: Did you smoke?

The answer most want to give is: What does it matter?

To scientists, epidemiologists, policymakers, statisticians, journalists and storytellers, the cause/effect is very important. It leads to further study, policy decisions, stories and good infographics. To cancer patients and their families, it typically leads to guilt and pain. 

I ran headlong into this issue when my work blog posted an infographic trying to raise awareness about the benefits of quitting smoking. Well-intentioned as it was, it fanned the flames among lung cancer patients, many of them non-smokers who feel that they have been lumped into a group of patients with a target on their back -- a group that is often tossed the compassionate comment, "well, that's what you get from smoking." Save for a minute the ridiculousness of that comment, which avoids thorny issues like addiction and our evolving knowledge base, the persistent linkage between smoking and lung cancer helps perpetuate the myth that to get rid of lung cancer all we need to do is get people to quit smoking.

That is far from the truth. 

We need, as lung cancer advocates will tell you, more research funding and better advanced screening. While I would be glad if the last cigarette in the world were smoked yesterday, that wouldn't erase lung cancer today -- nor would it erase lung 80 years from today. (Here's what we ended up posting instead of the infographic.) 

I don't have lung cancer. I have follicular lymphoma. But I felt in my own way, the stigma that lung cancer patients feel. There's a two-fold guilt that surrounds cancer patients. Unless you've led a saintly life, you immediately start questioning past decisions from physical, theological and philosophical perspectives. 

I've led a physically active life since, well, forever.  But I often wondered: Are the tumors growing in me the result of some carcinogenic seed I planted inside me 20 or 30 years ago? Did I set off the molecular chain reaction that got me to where I am today? Is my cancer some kind of universal moral retribution for my transgressions? A karmic kickback? 

It's little  wonder many cancer patients naturally try to live better after their diagnosis. On one hand, it's a shot at control in a sea of chaos -- an attempt to do something that you can to battle the disease. It can also be a response to the guilt -- a chance to make a deposit into the karma bank.

But there's another subtler form of guilt at play here, and it's what I call the dirt of cancer. See, for all the enlightenment we may have experienced as a society -- most people no longer refer to cancer as the C word -- cancer casts a shadow of dirt, grime and disease on an otherwise healthy person, and in doing so it can make a healthy person feel not just sick, but unwholesome. Forget for a minute the actual physical ailments that cancer, and of course, the treatment can cause, just knowing you have cancer in you makes you feel diseased. 

And the last thing any diseased person wants, I would venture to guess, is to be told what they did wrong to get this way. 


Thursday, November 14, 2013

Does Cancer Make You a Better Person?

Fernando Morales is a cool kid. He's a now 18-year old kid who was diagnosed with Ewing Sarcoma in 2011.

We featured his story on the Dana-Farber blog  more than a year ago as part of pediatric cancer awareness month, and then this past August, he appeared in the NESN/WEEI JImmy Fund Radiothon.  In the clip, he says with full assuredness that cancer's "brought out the best in me" 

I first saw that clip as part of this video  (Fernando is at about 1:40)  back in September and that has stayed in my head.

Cancer brought out the best in me.

Can I say the same? 

For the last week or so I've been mentally writing a post that I was preparing to call: 10 Ways Cancer's Made Me a Better Person. As I wrestled with that list, the idea  migrated to Five Ways Cancer's Made Me a Better Person. That then  devolved to the current question: Has Cancer Made Me a Better Person?  

Has it?

While I've never heard anyone say they were glad they were diagnosed with cancer, I've heard patients express sentiments similar to Fernando's. The underlying theme is the oft-repeated cliche: Whatever doesn't kill you makes you stronger. People talk about how they are stronger, more grateful, more aware, more thankful, even calmer in spite of the anxiety that cancer can provoke. 

But a better person?  Hard to say. Cancer has made me better at my job; I came back to my role at Dana-Farber with a better understanding of what and how to talk about cancer. But at the same time, it's made me more intolerant of people I work with who don't give their full effort. Is that growing intolerance due to cancer, too,  or am I just getting older? 

When I was going through chemo, every fourth week, I was tired and irritable -- probably hard to convince my family that I was a better person for those six months. Still, there's something nagging at my conscience that makes me feel like I'm wiser, more aware, more grateful. Do I live every moment to the fullest? Nah. Do I still get irritated at petty things? Yep. Am I the best evolution of myself? Not yet.

But in the end, what cancer's made me do is think, and write --  which for me is often one and the same. I've realized a while ago that writing for me is often how I think best. It -- writing, not cancer -- is a journey for me into self-awareness, almost a meditative state. And cancer's taken me deeper and more often into that place of self-awareness because it's made me write more often.  Part of why I wrestle with the notion of whether cancer's made me a better person is that by making that claim, I would also need to cede to the notion that cancer has fundamentally changed me -- that I'm not the person that I was two and a half years ago. 

I don't know that I want to give cancer that much of a stake in me.  

As Fernando says in his clip, you are what you are. Cancer doesn't change that. It only amplifies it. Hopefully, the parts that it's amplified for me are the good ones.

Monday, October 28, 2013

Cancer: My Distant Relative

When I was first diagnosed, cancer was so intimately involved in my life it essentially moved into my house, shared a room, consumed our resources. It was a member of the immediate family, always present and always on my mind.

Over the two plus years since diagnosis, though, I've been able to create a little distance. Even when I was undergoing chemo, it felt like cancer had moved away a bit -- to perhaps the position of an extended family member who I might think of often, but only visit occasionally.

Then, after treatment ended, cancer became more a family relative, who I still think of often -- if not quite as often -- and only visit infrequently. Which brings me to where I am today: If cancer were part of my family, it would be a distant relative -- one I know exists but don't plan on visiting any time soon.

That's good progress

But eventually, I'd love for cancer to be that distant relative I didn't even know I had.


Friday, October 4, 2013

5 Things I Learned at the Lymphoma Conference

Friday evening. Sipping a glass of wine with Stacy in a conference ballroom in Brooklyn, NY. We've just met Scott and Joanne, Burt and Kathleen. We get to chatting and there's an instant connection as lo and behold, Scott and Burt are also follicular lymphoma patients/survivors. But I suppose that's a bit expected. After all, wer'e in Brooklyn for the Lymphoma Research Foundation's 18th National Educational Forum. Over the course of a 2.5 days, we heard presentations from some of the country's leading lymphoma doctors and researchers. It was a wealth of information and a lot to take in. But I'm glad to have gone, and grateful to LRF and the dozens of doctors who participated.

My running route on Saturday morning: Across the Brooklyn Bridge at sunrise

Here's what I learned

1. There's abundance of life after cancer. That's a quote from Kelly Payne who gave a short speech about her survivorship story. And it's not that I related to her story. Different disease. Different treatment. Different prognosis. But there's was a palpable sense of hope and optimism throughout the conference -- not just from the oncologists who seem to view this as a boon time in terms of lymphoma drugs being developed --  but also from the patients. At first blush, you'd think a room full of 500 patients and their families would be depressing -- people desperately searching for an answer to their cancer question, for a rope to grasp. But that wasn't the vibe at all. It was living proof of the progress being made, and of the resiliency of individuals. 

2. Cats can have vitamin c deficiency. And apparently, that can cause leukemia in felines. Or so said one participant. No, she wasn't a doctor. Yes, she wanted to know if she should take vitamin C supplements.

3. I'm in the right place. It's so important to have a good, trusting relationship with your oncologist. Different oncologists have different approaches. And what works for you may not work for me. But the combination of Dr. L (who happened to co-chair this national forum) and the support of Dana-Farber is right for me. The combination of research knowledge and lymphoma expertise, responsiveness and approachability, and compassion and kindness may be one of the reasons I look forward to my quarterly visits. It's comforting, too, to know that the resources of one of the world's leading cancer centers is behind her (and me).

4. Cure. Long-term remission. Quality of Life. It doesn't matter what you call it. The drugs being developed now - idelesalib, ibrutinib among others -- promise to usher in a new era in lymphoma care that was first promised with the introduction of rituximab in 1997. 

5. Lymphomaniacs only. When we sat down at a table at Friday evening's networking reception, Scott's first question was: "Are you lymphomaniacs?" Right then, we knew it'd be a good weekend.

Wednesday, September 25, 2013

Cancer and Superstition

I remember watching baseball games on tv as a kid and firmly believing that in order for the Mets to score runs, I needed to sit on the floor. This being the Mets of the late 70s (who were even more abysmal than the Mets of 2013), they needed quality hitters not  superstitious juju to score runs and win games. But that didn't stop me from following the ritual.

A rational mind, I know, would look at superstition and scoff. Show me the scientific proof that a broken mirror produces bad luck, or knocking on wood prevents a jinx from erasing your good fortune. It just doesn't make sense.

Still, here I am with good news about my recent visit with Dr. L and I'm hesitant to write about it. And I know I'm not alone. I know many other survivors who fear that talking about how well they're doing tempts fate too much, almost inviting bad news to follow the good.  

I was reading a story recently about a Parkinson's  patient who confided in his therapist that he was constantly waiting for the other shoe to drop. His therapist told him, "You have Parkinson's. The other shoe dropped a long time ago."

Five years or five months from now, I may have to write a post that talks about how my lymphoma has returned. But that post will happen regardless of what I write today. The more I think of it, the more it seems that avoiding the positive news, or couching the positive in conditionals and wood knocking is giving in to the natural anxiety that comes with a cancer diagnosis. It puts the emphasis on all that can go wrong, instead of what's gone right. 

It's waiting for the other shoe to drop.

So I'll share the good news. After CT scans, bloodwork and an appointment with Dr. L, I remain free and clear. In fact, we are not going to do another scan for a full year. And, on top of that, the Red Sox, my adopted team since the late 80s have clinched the AL East. The Mets, on the other hand, didn't have nearly enough juju this year.


Monday, September 16, 2013

Is It Strange to Look Forward to a Visit with your Oncologist?

This is my third attempt to post a new entry. I'm tempted to say it's writer's block, but it's not. It's just that the thoughts I've been having are worthy of about a line or two and not a full post, so I'll do what all good bloggers do when they can't connect the dots from idea to idea -- I'll use bullets. 

  • I've been looking forward to my upcoming visit to see Dr. L. But then I often find  myself looking forward to my quarterly visits. That seems strange. It's not the Crystal Light flavored contrast agent; or the pre-scan fasting; or the bloodwork. Part of it is that it's an opportunity to be another 3-months clear. As much as I try not to live scan to scan, there's always that mental calendar that's hard to turn off. Each post-chemo visit from now until whenever may carry the anxiety of the lymphoma returning, but it also brings with it the opportunity to have as close as we get to a clean bill of health.
  • The other part of the anticipation is because of the way I'm always treated at Dana-Farber when I replace my employee ID with my patient bracelet. There's a feeling of welcome and belonging that permeates the place and for cancer patients who can feel vulnerable and full of a sense of otherness, not to mention just plain sick, this big bear hug of a feeling helps.
  • I'm also looking forward to our trip to NY to the Lymphoma Research Foundation's National Education Forum. But I have to admit, it's just odd to be looking forward to attending a forum for cancer patients. As we say, the cancer patient/survivor club is the nicest club that no one ever wants to join. It will be good to hear the latest on lymphoma research and treatment, maybe connect with a few other follicularians (that's my new word for follicular lymphoma survivors) and to get away for a weekend. (If you're going to NY for this event, let me know!) 
  • The longer it is between posts, the harder it is to post. 
  • I was surprised the other day to feel a passing wave of nausea. But if you believe what you read on the Internet, that's pretty normal even 6 months post-chemo. As a friend of mine said, I shouldn't be surprised given all the chemicals that were pumped through me. It's happened on occasion since treatment finished, but it's manageable and well short of the need for medication to manage it.
  • Our less processed life continues. It continues to surprise me with how much artificial stuff is in supposedly good-for-you foods.

  • As I introduced myself the other night to my new editing class, I was thinking: I wonder if any of my students Googled me, and if so, what they found. As an adjunct professor, there's not a lot of official info on me on the Emerson web site, but Google is an open book, so to speak. Two or three years ago, it would have been an innocuous search that would have revealed a French chef, and a corporate bio or two or me. Now, it's a different story. Cancer is inexorably part of my identity. It's not what I wanted, but I'm good with it.

p.s. - It's taken more than a week between writing and posting. It's just going to be a busy fall, with work, teaching, sports, and other commitments. So while I aim to post more regularly, it may be a quiet blogging fall -- both for writing and reading. So to all my fellow bloggers out there, hope you're doing well.  

Sunday, August 18, 2013

The Religion of Nutrition

If I have to tell the truth, I would admit that I haven't always been the healthiest eater. I was a picky eater as a kid, and although I grew up to be a much more adventurous eater, that hasn't always resulted in healthy choices -- like when I opted for the 10-scoop Colossal sundae at the Kellerhaus one summer vacation, or the many trips to Stuff yer Face in New Jersey for strombolis (they had two sizes, large and huge), or my college diet of buffalo wings and other college staples.

But the other day I looked in my refrigerator the other day and didn't recognize nearly half of the items in there. That's not that unusual. We've often played the, Name that Leftover game. The oddity this time wasn't the colors of the leftovers turned modern art inside Tupperware containers; it was the labels on the containers. It said things like "date paste" and sesame tahini. 

What's going on here?

About a year ago, I started working on posting this presentation on SlideShare for work. Around that time, I also discovered the website, the 100-day real food challenge. The idea behind that site is simply to pledge to eat nothing but real, unprocessed food for 100 days. I didn't take the pledge but between the advice offered there and the presentation, well, some of it sunk in. I didn't become a vegan, or make any categorical changes to my diet... yet, but I did became more attuned to what was in the food I was eating. And, I started to:

  1. Eat more fruits and vegetables, aiming for more than 5 servings per day.
  2. Eat less sugary foods. 
  3. Eat less processed food.  
We had some success there. Except for kale. I know kale is great for you, and that some of you may actually like the rancid stuff  but here's how the kale conversation usually goes.  

Stacy: You want some of my smoothie? 
Me: Um, is there kale in it? 
Stacy: It's really good. 
Me: You didn't answer the question. 
Stacy: You can't even taste it. 
Me: No thanks.  

 But kale (and shredded coconut) aside, I'll eat just about anything. Of late, largely through Stacy's efforts, that "anything" has been increasingly healthy.  Which takes us back to our refrigerator.  Most of the containers of unrecognizable food are of Stacy's doing. She's continued to embrace more of the whole food and plant-based eating philosophy, which has involved a lot of new foods, and a lot of reading. And here (the reading, not the whole food/plant-based eating) is where the problems begin. 

As you dive deep into the jungle of nutrition and diet books, you find that, as Stacy says, nutrition is a lot like religion. Many people faithfully follow their nutritional philosophy - vegans, vegetarians, whole fooders, eat loaclites, carb haters -- and leave the rest of us Twinkie-eating, soda drinking carnivores alone. (For the record, I don't eat Twinkies... anymore, or drink soda for that matter.) But some people believe in their nutrition with a zeal that often borders on fanaticism. And as they proselytize their nutritional philosophy, and then convert their beliefs into a marketable book with a catchy title, they often boil down complicated issues and inconclusive science into absolutes: Cheese will give you cancer; Blueberries will prevent it; Wine is good; Wine is bad.  

It ain't that easy. 

A simple web search on most food topics will almost always turn up evidence on both sides of any nutritional argument. And the more you dig, often, the more opinions you'll find. It's enough to make you feel guilty if your diet is anything but kale and water. (I haven't found any research saying either of those are bad for you.) 

Enter thoughtful eating.  For me, the trick is to walk the line between thoughtful eating and guilt-driven choices. There's enough guilt surrounding cancer (and eating, for that matter)  that I don't want to be dissecting the science every time I reach into the fridge. I love to eat, and I want to be conscious of what I'm eating, without obsessing about every bite, every meal. Sometimes a salad full of leafy green vegetables is perfect, but sometimes I need to enjoy a hot fudge sundae... maybe just not 10 scoops of it. 


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.


Thursday, June 20, 2013

A Visit to the Oncologist, in Two Parts

Part 1: Before the Visit

I'm a little amazed at how weird it feels to be a patient again -- even if it's only for blood work and an office visit. It's been just over four months since my last chemo and 3+ months since my last scan, but it seems of another time.

Part of the time distortion is that April and May are crazy busy times around here. Sports, schoolwork and a whole lot of work work has meant a lot of activity, and when you compress all of that in a short time frame, it tends to distort time in a way, stretching it and winding it up at the same time.

But as I sit in here in the clinic, I'm struck, odd as this sounds, by the number of sick patients. I realize it's a cancer center, but  after spending the first two years of diagnosis working to redefine (in my mind) cancer patients as someone who felt and looked like me -- that is asymptomatic and surprisingly healthy --  I've forgotten that many cancer patients here on Y8 look much sicker - tired, masked, bald or weak. It's a stark reminder,

Fortunately, I feel fine. My vitals were all fine. My weight is healthily down; my pulse is back to its low running rate. I'm just waiting to see Dr. L to hear about my blood work and such. I expect to hear nothing surprising, but there is -- and will always be -- that nagging anxiety that there was something in the lab work, some growing lump. As I've said before, there's very little I can do to control that.

Part 2: After the Visit
Everything's fine. Let's start there. But I left feeling a bit disappointed nonetheless. Dr. L was running late so I ended up seeing my NP, who is fine and nice enough, but isn't Dr. L. So that was the beginning of the let down, but what exactly does one say in those situations: "Oh, hi. I thought I was going to see Dr. L..." with the implication being, "and that's who I would have preferred to see."

No, that seems awkward and mildly insulting. So we just see the NP. But the disappointing point is that, although my blood work looked fine, there's nothing particularly informative about it. As she explains it, there not really going to see any signs of my lymphoma in my blood work, unless it's relatively advanced. And if it is relatively advanced, well then, I'd probably know about it because I'd have, repeat after me, fellow veterans of oncology visits: night sweats, fatigue, etc.

So if the blood work isn't informative, and the office visit consists of asking me how I'm doing, feeling my lymph nodes and spleen,  listening to my lungs (I'm guessing that's what we're doing with the stethoscope), and asking me how I'm doing... well, it just seems like we could all but do that by email, couldn't we?

At the root of my disappointment, I think is this: when we're post-chemo, or in remission, or whatever we're going to call this waiting-for-lymphoma-to-return phase, what we want is hard confirmation that we're okay. Isn't that why, at it's most basic level, we go to a doctor, any doctor? If we're feeling sick we want the doctor to make us better. But if we're feeling okay yet are concerned even ever-so-slightly that something might be lurking (as, I should add, all cancer survivors tend to be), then we want the doctor to say, "you're fine."

And even though I feel fine and have no reason to think otherwise, that's what I didn't get on Tuesday.


Tuesday, June 11, 2013

Play Ball!

In a week, we make the transition from kids' sports to Dad's sports. Little League and spring soccer wind down this week and my softball league begins the week after. It's a 40-and-over league that I more than qualify for by age. There are only two things remarkable about the league:

1) It's amazing that, given the shape of some of the players, more people do not get injured just from warming up. 

2) This is my third year playing, and hopefully, it's my first season that won't have missed games due to biopsies (two years ago) or chemo fatigue (last year) . 

Hopefully, chemo is in my rear view window and nowhere to be seen on the horizon. While I still think about cancer often, I find that, true to common wisdom, I'm not thinking about my cancer as often -- except of course, when I have a muscle ache, or a joint ache, or a cold.

I always play sports with a fair amount of intensity. But last year, when I patrolled center field (or anywhere in the outfield), I did it with at least a modicum of ambivalence, torn between feeling like I should be fatigued and wanting to prove to everyone that, screw cancer, I could still play. Ironically, there were only two people on my team who had any idea I had cancer, let alone that I was going through chemo. But as is true with much of my sports playing, the proving is really to myself.

There's a great line from The Princess Bride.  When Inigo Montoya finally meets the evil, six-fingered man for whom he's been searching all his life, the man (spoiler alert) stabs him and as Montoya struggles, he says, "You have an overdeveloped sense of vengeance. One of these days, it's going to get you in trouble." 

This year, I have no overdeveloped sense of cancer vengeance. I'm just going to enjoy the games. I have nothing to prove to my teammates or myself. Cancer. Biopsy. Chemo. Whatever. I know I can play. I don't even need steroids to help me.   


Tuesday, June 4, 2013

It's Just a Tooth

One of the perks of chemo, as I wrote back in October , was that I got a get out of dentist free card. Unfortunately -- or maybe fortunately -- that card expired. 

So I went to the dentist today and the good news is that my teeth are clean. The bad news is that #19's gotta go. I kind of suspected that -- the tooth's been on it's way out, so to speak for years, but I'm not really here to write about my teeth.

I'm here to write about my dentist.

After he evaluated the tooth to see what the verdict was, he sighed. He put down his instruments, and looked at me very seriously (or at least that's what I thought, but he was wearing his magnifying glasses and I was wearing goggles of sorts, so it was hard to tell). And he said, "I'm afraid it can't be saved." 

And all I thought was, "It's just a tooth."

I mean, I know having oral surgery will suck. Been there, done that. I know it will likely be expensive to get an implant. I know it will be inconvenient with appointments and recovery and such. 

But ... it's just a tooth.

Once again. Thank you, cancer, for the perspective.


Sunday, June 2, 2013

It's Not a Tumor, Or, 5 Symptoms that Aren't Symptoms At All

Some people spend many years worrying about whether they'll ever get cancer. Whether its family history or natural anxiety, every mole, every unchecked symptom, every unanswered question is  potentially cancer in the wings. 

Ironically, I was never like that. 

Which is not to say I didn't obsess about whatever ailed me -- I've had many visits to the doctor or walk-in clinic to check out various medical issues, but I never thought that the root of any of those issues was cancer. Even when we were chasing the diagnosis that would eventually be follicular lymphoma, it was only in a passing exaggerated worry that I imagined it could be cancer.  Now, the possibility of any ailment being a tumor is the first stop on my ride to diagnosis. The symptom detection train first stops at cancer, even if the eventual destination is much more benign. There are no express trains; It goes with the territory.

Sometimes I'll email Dr. L to check it out. Sometimes I'll  wade deep into the murky swamp of the Internet. Sometimes I'll  just wait for common sense to take hold. Here are a few symptoms that turned out to be nothing but signs of life.

1. Maybe I'm just getting old -  My knee began hurting one Thursday in between chemo rounds. By Friday evening, I had waded deep into the cloudy water online and was pretty sure that I had TLS - which was, after all, a potential side effect of my chemo, and which also could require immediate medical attention. It's hard to see clearly in the swamp but an email to Dr. L and a couple of Advil kept the train moving.

2. Maybe I'm just tired - Every appointment from here until I stop seeing an oncologist, I will be asked by doctors, nurse practitioners, and anyone else whether I'm feeling tired. Unexplained fatigue, along with night sweats and weight loss, are telltale symptoms of lymphoma's presence. So when is fatigue attributable to cancer, and when is it due to the fact that I wake up between 4:45 and 5:30 every day, work a full time job, do freelance work, coach youth sports, run, and blog. I don't think I need an MD to figure that one out.

3. Maybe this running thing works.  At the height of chemo, on day two of my last treatment, with steroids and fluids at their bloating best, I weighed about 5-7 pounds more than I've ever weighed, and about 15-17 pounds over what I would call my ideal weight. Some of those pounds naturally disappeared a week or two after the chemo ended. But since then, I've made a concerted effort to lose the rest. I've been trying to watch what I eat and take in more fruits and vegetables -- although this is very tough to do in April and May when 90% of our meals seem to be on the way to or from a soccer field, baseball field, track meet or karate dojo. Most of my weight loss effort has been through running, and I'm happy to have lost most of the pounds I've wanted to, but every time I step on the scale, I kind of want the number to be low, but not too low. 

4. Good-bye standing desk. The harm of a sedentary lifestyle has been well documented. So too, has been the rise of the standing desk and the treadmill desk. For $23 at Ikea, I bought the parts and converted to a standing desk. Problem is: the veins in my leg aren't as fond of gravity as they used to be.  Standing 4-5 hours a day led to some swollen lower legs, an ultrasound and bloodwork. When that revealed nothing, it also led to the dismantling of the standing desk. 

5. It's not a TUmah -- In one of Arnold Schwartzenager's "finest" acting performances, you may remember, he plays a cop undercover as a kindergarten teacher. When a kid suggests that maybe he has a tumor, Arnold responds, "It's NOT a TOO-mah," a line we have used often in our house, both before and after diagnosis. The other morning, I felt something inside my cheek. It felt like I could move it about and instantly the train pulled into cancer symptom station. But on further review, I could feel something irritating the outside of my cheek as well; and looking closely at it in the mirror, it became pretty clear that what I could feel wasn't a lymph node gone rogue, but a pimple forming. Didn't call the doctor on that one.

So there you have it. Five symptoms so-to-speak, two calls to the doctor. None related to lymphoma. As I move further out from treatment, I know that the symptom-mania will subside, if not completely disappear.

I also know that I'm not the only one chasing potential symptoms.  Fellow patients/survivors out there - what crazy symptoms did you have that turned out to be unrelated to cancer? 

Sunday, May 26, 2013

Anger Management

I had a very distinct and clear thought as I headed into Boston on Thursday morning. I didn't want to be surrounded by cancer. I didn't want to hear from other cancer patients or  survivors; I didn't want to read fellow cancer bloggers. I just wanted a cancer holiday. 

A day off.

The problem is: I was on my way to work at Dana-Farber Cancer Institute. Avoiding cancer was sort of impossible. So I did the next best thing. I meditated for a few extra minutes. And by meditating, of course, I mean running. 

After a good long run along the Charles River and back past the Boston Marathon memorial, I went to work where I read about cancer survivors, edited stories about platelet donors, and talked about our content plans (which, of course, is all cancer related). It was all fine. But for the past few days I've been wondering why I had that reaction.

I was tired, sure. But there was nothing to trigger it. I'm more than three months removed from the post-chemo steroidal roller coaster; I'm feeling better than I've felt in a while; running more than I have in three years. And, through this blog and elsewhere, I've largely come to accept the cancer part of my identity. Why Thursday did I suddenly want to twist, squirm and run from it? 

My blogger friend Tara talked in a recent post about anger, and it got me thinking, I've never really been angry about my diagnosis. Anxious, scared, annoyed, sad, frustrated, defiant, grateful to an extent. All those things. But angry? Well, not at the cancer. 

Could it be that for almost two years -  through watchful waiting, scans, treatment, and now post-treatment - my anger's been like a giant pot of water on low heat, warming but never reaching full boil? That occasionally a bubble will surface in the form of a disproportionate reaction to a kid's action,  an uneven response to an argument, a lack of tolerance to an inconsiderate act? 

Could my feeling on Thursday have been a bubble -- or a warning that a full boil is on its way?

I acknowledged in my last post that anger is darkness. To be honest, I wasn't sure why I wrote that. I felt it, but I wasn't sure where it came from. And it comes from here: the shadow of cancer can be full of anger and it can cast darkness over otherwise light times. And cumulatively, with each bit of anger that surfaces, it adds to the darkness and casts a pall over life.

Life should be full of light. Life with a healthy (yes, healthy) family, complete with two good kids should be overflowing with light. With so much light that it's hard to see. When I feel a bubble rising, that's what I need to remember.

When things are going well, the remembering is easy, but when adversity -- in all its shapes and sizes -- strikes, the remembering is hard. I wrote most of this post sitting on the floor in a dark corner of a hotel room that we were calling home for a Memorial Day weekend soccer tournament. Stacy and the boys were sleeping, or attempting to do so. 

It's been a fun weekend, but it's been full of sub-optimal sleeping arrangements, sub-sub-optimal weather conditions, and a few sub-optimal games as Matty's team is playing "up" against stiffer competition. Which is all to say that I've needed both a steady stream of coffee and frequent self-reminders that life is full of light. 


Friday, May 17, 2013

10 More Things I've Learned From Cancer

A couple months back, I posted this list about what I've learned from cancer. It's now been more than three months since my chemo ended; more than two years since I began the trip down biopsy road which would end with my follicular lymphoma diagnosis. 

Along the way I've gone from anxiety and awkwardness (about disclosing my diagnosis) to understanding and openness, passing through a variety of states -- denial, ignorance --on my way there.

One constant has been learning. So before my next three-month check up in June, time for another list of what I've learned from cancer.

1.  Maybe it's just me, but there seems to be a paradox among cancer survivors: we celebrate our successes quietly and we celebrate other survivors' successes loudly. Maybe it's that I don't want to jinx my own success, but the further removed I am from the inner circle of diagnosis, the more comfortable I become using words like "cancer free" and "congratulations.'

2. Every season in New England is the best season. I thought that before my diagnosis and I feel it more strongly now. It's not that I'm enjoying each season as if it's my last -- far from it. It's almost as if I'm enjoying each as if it's my first.

3. Anger is the most useless of all emotions, but passion and anger often get confused. Anger comes from darkness; passion comes from light.

4. Here's another cancer paradox: every cancer is different yet many cancers share similarities. No two people will present exactly the same, but on the biological level, understanding the similiarities of cancers -- not just of one particular cancer, but of cancers even of different origin, is one of the keys to unlocking treatments and cures.

5. There are few things better than watching a kid who has struggled at something, and really tried to get it, finally get it. Doesn't matter if that something is hitting a baseball or understanding quadratic equations. It's great when it clicks.  (Okay, in truth, I didn't need cancer to learn that one.)

6. It's amazing how much research is going on into new drugs, new approaches to treating lymphoma, and in particular NHLs like follicular lymphoma. But every time I read about the "promise" of this or that approach, I want to scream: "Stop promising. Start delivering." It can be maddening how long it takes for drugs to get to market. Sometimes I feel like it's a race between drug discovery and indolent lymphoma growth.

7. Knowing you have cancer every day is different than thinking about your cancer every day.

8. Cancer sucks. No doubt about it. But smiling helps. So does laughing. It's hard to be angry, nervous, anxious or any other negative emotion if you're laughing. It's as if your mind is occupied with the laughing and it crowds out the other emotions. 

9. There's a lot of talk about defensive medicine and over testing, and the burdens it puts on the health care system. But if my primary care physician didn't continually chase my initial complaint about a swollen lymph node that wouldn't go away, my lymphoma would have grown and grown until... who knows. 

10. Don't worry about seizing the day, just seize the moment. That's good enough. The next scan, the next blood test, the next appointment is months away. It's tempting to want to rush to turn the pages in a calendar to mark the weeks, months or years in which we are in remission, cancer free, surviving. But it's better to live the days than count them.


Saturday, May 11, 2013

The Bright Light of Cancer

It seems like a lot of my cancer blogging friends are stepping back. Some that were blogging regularly are doing so less so; others have turned the spotlight away from cancer, or even health, and others still, have flipped the light off and closed the door behind them.

I understand it.

I've written about how often I should blog, and if you closely examine the content of the blog over the past month or so, I seem to have veered slightly away from writing about  my thought process and mental health as it relates to cancer. My last post didn't even mention cancer or lymphoma -- but then again, if you examine the early posts, I stayed away from the big C word. Denial? Fear? It wasn't accidental. As a writer, I usually think carefully about word choice so it couldn't be coincidence that a blog called,Thinking Out Loud: A Cancer Blog, didn't mention the word cancer. Most often, I would use the term, my diagnosis.
I'm comfortable now talking about my lymphoma, my cancer. But it comes at a time when my cancer doesn't have much to say. The chronology of a cancer crisis progresses like a nova. The intense light builds and builds, bursting to the forefront of your identity with such blinding brightness, that it obscures all other elements.

All you can see -- and all, you fear anyone can see  -- is that white hot light of fire. The rest of your identity exists; it just seems invisible to those who can see that explosive brightness. This is why so many struggle with who to tell, and who not to tell. If I tell this person I have cancer, will they still be able to see me.  Or will they just see the cancer?

But here's the thing about novas: they slowly return to their original state. Their brightness fades, and the rest of your identity seemingly shines more clearly. It's not that I have less to say about cancer, it's just that the bright light of cancer has faded. For some cancers -- those with legitimate cures, it may fade to black, leaving only a residue of light. For the more chronic cancers, the light will stay softly on in the background, pulsing with activity from time to time. 

As the light grows stronger, it will be reflected here. And when we have found a definitive cure for follicular lymphoma -- not a push-it-into-the-background-and-wait-for-it-to-return treatment, but a god's honest, it's-not-coming-back cure, then perhaps both in my identity, and in this blog, cancer will fade to black.


Tuesday, May 7, 2013

My Quiet Space

Torn between writing about running or not writing, I'm going to write about running. Or at least I'm going to start by writing about running, again. I've found out during these past two months as both my frequency and distance has increased how important running is to my well-being. Yes, the exercise has been great and the shirts that didn't fit so well at the height of steroids and post-chemo carb-loading now fit a bit better. 

What it really comes down to is that running is my quiet space. No email. No social media. No phones. No people. Just me and my music. The cliche often portrayed in commercials, books and movies is the runner's epiphany. Lace up the shoes. Take a few strides and answers to vexing problems crystallize. That never happens. Not to me, at least. 

My mind wanders a lot when I'm running. It thinks about the lyrics of the music playing; it observes the surroundings; it usually grouses a bit about the lack of friendliness of other Boston runners (the runner's courtesy wave is all-but-never acknowledged on my Boston runs, and always acknowledged on my Barrington runs); maybe it bounces a bit from how to phrase an email or what to say to a colleague; it thinks about how to run a baseball practice; perhaps a couple of ideas will float in for a future blog post.   and often, it calculates how far it is to the next turn, the upcoming section of run, how its body feels, and the pace of the run. It's rare that I even think of cancer, or my cancer, unless it's done with a little bit of n attitude. And after my mind's processed all that, I have a mile done and four more to go.  

Then a wonderful thing happens. 


Because for all the noise pumping through my headphones, running is my quiet space -- my meditation. It's my way of learning about myself. Because once the scattered thoughts have come and gone, and it's just me, my music and my running, my mind turns inward and stops processing tasks, and starts thinking about who I am, how lucky I am to have the life I have, and how I want to live. I almost always end runs feeling inspired and energized, not simply because I've released a few endorphins and burned some calories, but because of the quiet space I was able to inhabit for the last few miles. 


Tuesday, April 30, 2013

So, How are You?

Once upon a time, "how are you?" wasn't such a loaded question. Nor wasv"how are things going?" Or, "hope you're well?" Or "how's the family," for that matter.

When you think of it, "how are you?" is an impossibly broad question if you think about it literally. Of course, most people don't think of it literally, but then, I'm not most people. I have a need for accuracy that I've been told by at least one person in my house, can occasionally stretch my stories to a somewhat unbearable length. Matthew, fortunately, has inherited this gift. While his brother is the talker of the two, if Matthew actually gets going on recounting, say how Messi scored in a recent Barcelona game, the story might take longer than the game, even with stoppage time. But you will know everything happened before -- and after-- that goal with preciseness, if not conciseness.

Which brings me back to, How are you?

The meaning of the question lies in the interpretation of the answerer. And for someone who feels the need to be fullly truthful in their answer, that can be tricky, leading to long answers and awkward exchanges. When I was first diagnosed, I always took the question, often asked by caring people with a tilt of the head and a touch on the arm, to mean: "I'm so sorry you have cancer. How are you dealing with it?"

When I was going through treatment, I heard the question differently. It sounded to me like: "Oh, you're going through chemo? But your hair is not falling out. And I saw you running last week. Are you really going through chemo? Because if you are, you seem okay. Are you?"

But now, as I'm a day away from three months post chemo, I'm almost ready for the meaning of "How are you" to return to its rightful place on the shelf of available small talk.


There are still times when someone I haven't seen in a while will use the question, asked with a pronounced emphasis: "How are you?" to let me know that they know -- to inquire without inquiring, to ask about my cancer without having to say the "c" word. When you think about, it's a lot less awkward way of asking, than, say, "So, how's the old cancer doing?" as if my lymphoma was a bum knee that's been bothering me.

In the past, I might have tired to answer with an honest description including the results of my latest scans, and the details of symptoms related and unrelated to lymphoma. But after two years of being asked the question by a growing group of people in the know, I've learned to save the boring details for Dr. L, and answer, instead, based on my interpretation of the question:

"I'm doing well. Thanks for asking."


Sunday, April 21, 2013


Thinking Out Loud's been a bit quiet this last week. It's not as if there wasn't much to think about, or enough time to write about them -- I only worked Wednesday and Thursday this week but I was a weird emotional distance from the Boston Marathon Bombing. Fortunately, I wasn't close enough to have the traumatic emotional response that many have; I was three years removed from that. Nor was I far enough away to be completely insulated from what transpired -- I don't think anybody was.

Instead in the initial hours and days after the bombing, I seemed to occupy an emotional middle ground. I vividly remember 9/11 and how I felt then and this event was closer to me than that; yet I still felt slightly detached from the rawness that many people felt.

I was talking (and emailing) with a couple of card carrying members of the Cancer Club about this, and the sense of guilt that accompanied that partial detachment. It's not that any of us viewed the events with apathy or anything close to it, but the same cancer cocoon that protects us from too much negative information coming in, perhaps prevents too much emotion from spilling out, even in the most traumatic non-cancer events. It's as if there are two worlds -- our cancer world and the other world, and that other world is sometimes viewed through a haze from our world looking out.

On Saturday, I thought it right
 to wear my Dana-Farber
Marathon Challenge gear from
2010.  Not only Boston Strong
but also Dana-Farber Strong.
And then I went for a long run today.

I've been running a lot this week, in fact -- today was my 7th run in 9 days and the first time I've tackled my favorite 6-mile loop in probably 3 years. As I settled into my pace after the first mile, my mind settled down too, and I thought of how many of the victims of the attack were runners (either marathoners or casual runners), and how many months, or years, it might be before they can throw on a pair of running shoes and go out for a run on a beautiful spring day.

And I thought about an acquaintance of mine who contracted Lyme Disease and can no longer work.

And I thought of all the cancer patients who were recovering from surgery, or undergoing chemo, or stem cell transplants, or radiation, or all of the above.

A bit of the scenery on my favorite in-town run.
Photo by Mary Motte, from the Barrington
Virtual Art Gallery
Cancer comes with an ample amount of guilt, served up in many flavors. From guilt that what you did somehow caused your cancer to karmic guilt that wonders what you did to amass such dark karma, to guilt that your cancer is "easy" compared to other cancer patients to the more predictable guilt over being a burden to friends and families.

It's one of the perverse ironies about the mind that at a time when we should be most open to receiving, we often feel guilty about doing just that.

But guilt comes not only in flavors, but also in depths. Sometimes you can peel away those layers of guilt, and when you do, you're left at your emotional core...  with perspective.


p.s. Adding a link about my fellow DFMC runners,

Monday, April 15, 2013

If It Weren't For Cancer . . .

This post was going to start like this: Oh for god's sake, not another post about running. I formulated some ideas for this post as I was out enjoying a beautiful spring run on a day off. Then before I even made it inside my house, Stacy told me the news from Boston.

I don't know what I can add to the discussion that will consume us. There will be grief, sadness, anger, frustration. There will be relief, joy, appreciation and gratitude. Many will feel some of those emotions. Some will feel all of them. It seems a natural human reaction to tragedy to gauge our proximity to the event. We measure the degrees that separate us from disaster.

Three years ago, when cancer was something I witnessed and not experienced, I finished my Boston Marathon in an official time of 4:11. The first explosion went off at between 4:09 and 4:10 and the second one shortly thereafter. But for three years, I would have been running down Boylston Street in smoke.

I had though of volunteering for this year's race -- to thank all the Dana-Farber runners for their dedication and fundraising. I was going to ask to be at the finish line to help escort runners from the finish line back to the Dana-Farber Marathon Challenge headquarters. In the end, my boys are off this week and I wanted to spend some time with them... and not have to deal with the crazy traffic that usually ensues on Marathon Day. So instead of volunteering, or even working today, I took a vacation day and spent it suburban Rhode Island.

Crazy indeed.

Friends and family who know the Dana-Farber connection to the Marathon (and my connection to running and Dana-Farber) have reached out to me and Stacy to make sure I'm okay. When one found out I was fine, she commented, "You must have a guardian angel watching over you."
"Yes," we replied. "It's called cancer."

If it weren't for cancer -- for six months of chemo, would I have been running the marathon today? If it weren't for cancer, would I have turned a milestone birthday (50, last December) into a reason to run? I've done that before. If it weren't for cancer, would I have been as concerned about taking time off to drive my kids to soccer camps and dentist appointments and ice cream shops on their school vacation week.

Who knows? It's likely that my knees and my wish to remain married would have kept me from another marathon. But it's hard to think of what decisions I would have made if I didn't have cancer. It's hard to think of how I even thought before I had cancer. And, in some respects, it's pointless to try.

There are thousands of decisions over the course of my life that took me to Dana-Farber five years ago. And who knows whether any decisions I made in my life had any affect on my developing cancer. It's likely.

I'd like to think that there is some kind of positive life force -- karma, God, human conscience, whatever -- that balances things out. But at times like this, it's hard to see how things balance out. It's hard not to think that it -- all of it -- is anything but serendipity. A string of connecting decisions that map out our fate from day to day, from year to year, from cancer diagnosis to safety.

Friday, April 12, 2013

The Capacity for Joy

I was going to write about fear and guilt but I'll get back to that topic in a later post. Instead I want to talk about the flip side of that coin:  joy. 

One of the things that cancer -- or any serious disease -- threatens to steal is not just happiness, but the capacity for joy. Mired in the day-to-day struggle of symptom or side-effect management, the disease becomes not just the oft-cited "new normal" but it becomes the new routine. Instead of a daily dose of happiness, we look for a serving of "am I okay today?" 

At best, our answer is yes. At worst, it's answered by uncertainty, ambiguity, and a day of obsession (or worse, Internet searches.)

In the process, the constant thinking about the question adds layers of clouds to your emotional weather that become harder to penetrate.The little things that once gave us joy can't make it through and even the larger bursts of sunshine are muted by the time they reach us.

That's the danger. But it doesn't have to be the reality. While the events that occupy our days and lives help shape how we feel, it's often true that the emotion you find is the one you're looking for. Looking for an argument? I'm sure you'll find one in pretty short order. Want to get mad? Good bet, you'll be able to find something in your day to sate that appetite for anger. 

I often look back at moments in my day and wonder why I deprived myself of joy. Was that offense really so egregious? Where was the harm? Why instead of laughing it off, did I pile on another layer? 

If you want moments of happiness to visit, then you have to have the capacity for joy. You have to be able to put aside the worries and obsessions, and decide that you're going to receive the joy that surrounds you. It becomes self-fulfilling - clouds beget more clouds; sunshine produces more sunshine.

* * * * *
There's a great little article that's circulating around social media and blogs from the LA Times. It's somewhat on topic here, but probably more related to item # 6 in my list of 10 Things I've Learned, and the impact that cancer has on those near the center of the storm. A short, but well-worth it read.


Wednesday, April 10, 2013

Spam, Spam, Spam

A quick post to say that the spambots have been finding this little blog with increasing frequency. I've been getting about 10 or so anonymous spam comments on a daily basis so I've had to enable word verification for comments going forward. A pain -- but a necessary evil to avoid spam comments which are, at best, annoying and at worst, dangerous.

And since we're talking spam, a little Python spam for you.

Hope to have a more thoughtful post for the ride home.


Thursday, April 4, 2013

That Cretin Creatinine - A Detective Story

Let's start with the good news: it's very unlikely my kidneys are failing.

Of course, I never really thought I had kidney failure... except maybe for a brief couple of hours between my first creatinine test and my second. Have I mentioned that the Internet is a scary place for medical information?

The problem is, nowhere on all the wonderful places where one might surf does one find a site that says, "It's probably nothing. Go have a glass of wine and calm down." That's what your doctor says. Except the last part. He usually says, "It's probably nothing.... but let's run a gajillion tests just to rule out all the somethings that it probably isn't"

Maybe some context would be helpful here.

About two years ago, I was in the midst of following up on a couple things that I had brought to the attention of my doctor. The first one, which was probably nothing, was a swollen lymph node that was eventually diagnosed as follicular lymphoma. The second was some swelling in my lower right leg. That was probably nothing, too, but my track record with nothing wasn't that impressive. So after blood work - normal and an ultrasound to rule out a blood clot -- ruled out, we were left with essentially nothing.

My leg was never really bothering me, but it was just kind of there, a little swollen, and noticeable. Sort of like my lymph node. Two years later and my lymph nod is no longer "swollen" -- thank you rituxan and chemo, but here's my leg returning to its less-than-normal status.

This time round, I have a few more variables in the mix.  For one, I've been doing the whole standing desk thing for three months. Not eight hours a day, but enough hours to probably have an impact. And then there's the chemo.

I reached out to Dr. L who, checked my recent scans and also noted that I had mentioned this problem two years ago when I first saw her. She didn't suspect it was lymphoma related and while I would have preferred to see her than my primary care physician, for a variety of reasons including proximity. I set up an appointment with my PCP.

I have to say up front that I like my PCP well enough. We're not hanging out on the links together, but he's a nice enough guy, thorough and smart. He is, after all, the one that had me do tests on that pesky swollen lymph node that was probably nothing. The problem is, after two years of care at Dana-Farber, the bar is set pretty high. So after checking in with a not un-friendly desk person, I waited.

Eventually a nurse came out and asked if I had filled out any paperwork? No, I hadn't. She looked confused. She came back with paperwork -- a health questionnaire that I started to fill out. She reappeared and asked if I was here for a physical. Um, no, and I started to explain. OH, she says, that's why I didn't have paperwork. She had just assumed that because I was being seen in a time slot that's usually reserved for physicals that this must be why I'm here. Um, no.

If you're wondering, yes, it is the same nurse who believes that "they" have already discovered a cure for cancer but are keeping it to themselves. After we have that awkward conversation, nurse leads to doctor, doctor leads to lab tests (and yes, another ultrasound). Lab tests lead to slightly elevated levels of creatinine.

Huh? About 10 minutes after I saw the tests online, I get a call from a nurse saying that my PCP wants to run the test again. Okay. In the meantime, it's time for me to figure out what the hell creatinine is. And why mine is slightly elevated. I do some reading. I convince myself that I am beginning to have kidney failure, even though my kidneys feel just fine. I do some more reading, trying to find why it might be elevated. I'm now certain that my kidneys are failing... or I have pre-eclampsia, which only applies to pregnant women. I read some more. I know that "Creatinine is a breakdown product of creatine, which is an important part of muscle" but I haven't started any giant muscle building program. I finally hit upon this nugget: among the things that can elevate creatinine levels are strenuous exercise, high levels of red meat, caffeine.

My bloodwork was done on Monday around 3 pm. What happened in the 48 hours prior? Well, ran about 3.5 miles at 6 pm on Saturday. Ran about 5 miles at 11 am Sunday. Had leftover brisket (mmmm) for lunch on Sunday and Monday. Oh, and I didn't sleep well on Sunday so had an extra cup of coffee on Monday around noon. Strenuous exercise. Red meat. Caffeine. My kidneys visibly relaxed.

When they retested me on Wednesday morning, just to be safe, I had them prick the other arm. Wednesday afternoon, I got the results: as I suspected, creatinine levels were back to normal.

I celebrated with a nice brisk run this morning (after my coffee, of course). And resigned myself to the fact that my veins, like their owner, are just older and more tired than they used to be.

Monday, April 1, 2013

Conspiracy Theories and Cancer

Stop me if you've heard this one before: Cancer is cured. It has been for a long time. But the [fill in the blank] are keeping the cure a secret because they're making so much money treating cancer patients.

That's a theory that's been going around for I don't know how many years. Usually, the alleged conspirators in this plot are the pharmaceutical companies who don't want to let in on the cure because it would eat into their profits. They're also experimenting on people. And, by the way, don't eat the Soylent Green. See, I do love science fiction, but there's more than just a space separating science from fiction.

There's so much crazy out there that I expect to hear conspiracy theories from everyone.. about everything. I just didn't expect to hear the cancer conspiracy theory from a nurse. Here's how it went down.

I was visiting my primary care physician and as I sat in the exam room, I saw this magazine:

As an editor, this sensationalist headline bugs the crap out of me. Granted, I've never had to compete on the newsstand like Time does, but the idea that a magazine journalist is going to reveal to the world how to cure cancer is absurd, misleading, insulting, and, to all the people looking for answers and hope, cruel. So I was about to engage my nurse on the subject.

Me: "Oh, I see you have the Time magazine that's gotten a bit of attention."

Nurse: "Oh yeah, that. Well, they found the cure a long time ago."

Me (doing my best Scooby Doo): "Huh?"

Nurse: "Yeah, I heard that years ago at Dana-Farber, they..."

Me: "You know I work at Dana-Farber?"

Nurse: "Oh. Well, didn't they fire a, um, not a doctor. What do they call them?"

Me: "A researcher?"

Nurse: "Yeah. They fired him because..."

I'll just stop the conversation there... NOT because she stopped. Oh no, she continued. She continued, even after I added that I'm not just a Dana-Farber employee, but also a CANCER PATIENT! She claimed that Dana-Farber didn't want to cure cancer because they made so much money treating cancer patients. Dana-Farber. A non-profit. That has curing cancer as part of its mission. Now, I'm not naive enough to think that just because you attach a non-profit label to your organization, you guarantee goodness. But I've seen the dedication and commitment of Dana-Farber doctors, nurses, and what do you call them, oh yeah, the researchers up close. And, you know what, they have cured some cancers. And hopefully more cures are on the horizon. But there is no conspiracy.

I wanted to scream at her but I remained polite. She was a nurse and she had to take my vitals. Plus she probably had access to needles and other sharp things.

Look, everyone's entitled to their opinion - crazy as it may sound. But if you're going to be a nurse, shouldn't you have the trust and faith in your fellow healthcare professionals? Shouldn't you at least vet some of your crazy theories before your launch them on your patients? Or at least, check your patient's chart before you open your mouth.


Wednesday, March 27, 2013

What's A Guy Like Me Doing at A Conference Like This?

A funny thing happened on my way to last blog post. I had been writing it over the course of a couple days and right before I posted it... I hesitated. Then I hit publish.

The post has been somewhat popular, and I'm not that surprised. For one, it was a Top 10 list. But it was also as honest as I've been in my blog and I think that helped. So did  a couple of posts on a Facebook site I hadn't discovered yet, and on one I had.  

The anticipated popularity  is part of why I hesitated. Now that more of you may be reading this, there's more pressure to post with both frequency and quality. It's the frequency that frightens me. When I switched the blog from a private thinking, and perhaps healing place to a more public forum, I resolved not to write any differently, or through any different filters. I didn't -- and still don't -- want to post on some set schedule that pushes me to post when I have nothing to say, or no time to process what I'm writing. Because first and foremost, that's what I'm doing here -- processing things by thinking out loud. Hopefully that process is also helpful to others. That means I might post three times a week sometimes; or, like this week, only once. 

Okay, enough blogging about the blog. Back to our regularly scheduled post. 

* * * * *

Some observations from the Lymphoma Research Foundation's workshop in Needham, Mass. on Saturday. 

The advance billing was: great info; great food. It delivered on that. But it was at least a little odd sitting in a room of 150 or more lymphoma patients (or family members). I've been to many conferences before. I've gone as a reporter, an editor, an exhibitor, a presenter, and just an average old attendee. But this was the first one where I went as a patient.  The room was set up in round tables and as I walked in, there were a bunch of partially filled tables, some with coats thrown over the backs of chairs holding space. I tried to find coats that looked friendly. Really. I was looking for youngish looking coats -- or even older coats that looked like they belonged to youngish people. I partially succeeded. But the oddest part was that as we made small talk about the weather, the traffic, the coffee, the overwhelming question on everyone's mind was:

"What are you in for?"

I'm sure we all wanted to know if the person sitting next to us was patient, or family member, and if patient, what type of Lymphoma patient? And what was their status? And what treatment they had? And what side effects? And a million other things. But we kept it to small talk. At first. Later, after we broke up into smaller groups of different disease types, and then broke for lunch, the ice was already broken. We knew we were all folliculars and we had more opportunity to talk.

Outside the meeting rooms, there were small tables set up for the sponsors. It's one thing to have information from a cancer center (Dana-Farber was there), or from the Mass chapter of the LRF pitching their walk-a-thon. But it felt odd to have drug companies exhibiting at a conference for cancer patients.  I know it's perfectly legitimate. It just felt odd. 

I've said it before and I'll say it again. I get someone possessive about my oncologist. Dr. L presented about the history of lymphoma and in a weird way, I was rooting for her. For what, I don't know. I suppose, I wanted her to be smart, informed, compassionate, articulate. Part of this could be because she represents Dana-Farber, my employer and center of care. But I think the deeper reason is that if she were to present well, answer questions expertly, then it would in some way reinforce the trust that I have in her as my oncologist. She did great. 

So did Dr. Freedman who answered about an hour's worth of questions from patients in the Follicular Lymphoma breakout session. The instructions to all the attendees was to try to keep the questions broad so they would appeal to as many people as possible, it didn't stop some people from using this as a public appointment with Dr. Freedman.

A lot of the discussion was focused on the issue of maintenance therapy. In short, many follicular patients have embarked on a two-year plan of Rituxan treatment once every two months, following successful treatment. There's no evidence that this so-called maintenance therapy improves overall survival, but a study has shown an increased duration of remission. Sounds good, right? Well, I had gone into the conference pretty well set on the idea of not getting maintenance. But on listening to the Q & A, and then having a discussion with my table mate -- a gentleman a little younger than me who was now about halfway through his Rituxan maintenance, I was now leaning the other way. Why not do maintenance?

That was the question I tossed about as I drove up to NH for the remainder of Matthew's soccer tournament. By the time I arrived I was convinced I would do maintenance. So after dinner, I emailed Dr. L with some questions. Shortly later, she replied. And the long and short of it is this: none of the maintenance vs no-maintenance studies involved patients who had been treated with Bendamustine-Rituxan, which is proving to likely be superior to other therapies studied. So the likely benefit of maintenance after B-R s likely to be less pronounced, or non-existent, not because of maintenance's shortcomings, but because of B-R's strengths. So we are back to making a decision based on the Do Something / Feel Healthy decision axis.

Which for me, means I'm back to no maintenance.