Terrorism and Cancer

I've been toying with the idea for this post all week. The idea came to me as I was leaving the T station on Monday. Usually I write a post in the morning and publish it that day. For some reason, I've been hesitant with this one. But here it is nonetheless...

It's easy to say we live in a dangerous world.

From there, it's almost as easy to say that we need to remove all those dangers from our lives as if we're childproofing our house from newly ambulatory infants; that we need to refrain from activities (air travel, movies, shopping malls, school) that create that danger. That, ultimately, would leave us living in a bubble, if we could invent one, or under our bed (although as fans of Calvin and Hobbes will remember, that's where the monsters live at night.)

Last week's act of terror in Newtown made me think of the daily risks I go through. Here's my typical routine. I drive in the dark and often weather-impaired conditions along a five-mile stretch of road populated with makeshift memorials at the site of past accidents. That leads me to the highway into Providence. (There are somewhere in the neighborhood of 40,000 motor vehicle deaths each year in the U.S.)

I get on an Amtrak train headed into Boston, walking past the Amtrak police, the Providence police, and often a bomb-sniffing dog. Amtrak trains have not been the scene of any terrorist actions to date, but derailments aren't foreign to US train travel.

Once in Boston, I either bike through Boston streets (enough said) or now that it's cold, take the T (the Boston subway) which locks a couple hundred people inside a moving electrified trolley. As you enter or leave the crowded stations, emergency evacuation signs are among the largest ads you see. More often, I'm most concerned about the smells and germs circulating around me and less about derailments or acts of terror.

I try not to breathe too much.

Then I walk a half-mile to work, where, in an unsecured building, I spend nine or so hours, with a couple hundred people, including researchers, IT folks and fellow communicators. There are some great people in all those departments, and a lot of folks who I don't know -- and at least two of those professions attract at least a few individuals who seem to prefer technology and science to people. 

I then turn around and repeat the process to go home.

If I spent too much time thinking about the risks, I'd calculate them to be a lot higher than they really are and I might never get out of bed.

So what's that got to do with cancer?

There's a song by one of my favorite artists. It's called "(Everything Will Give You) Cancer" by Joe Jackson (the video is below as well). The chorus goes like this: Everything. Everything will give you cancer. There's no cure. There's no answer. Everything will give you cancer. 

It's an old, sarcastic little song, maybe 25 years old and he's got a point. If you started making a list of things that might be linked to some forms of cancer, you'd have a list that unfolded over many pages -- and included on it, would be things like, alcohol, a high-carb diet, tobacco, and oh, the sun. 

For 48 years, I carried on mostly oblivious to any risky behavior I engaged in. Did any of that fuel my cancer? Who knows? Did all those delicious cold cuts I ate - piled high, Dagwood style on fresh-baked Italian bread lay the seeds of my lymphoma?  Did shots of Jack Daniels start the process of the DNA mutations that led to my swollen lymph nodes twenty years later? Doubtful. I have a hard time believing that anything I did was in excess enough to be related.

Sure, I'm more careful about what I eat and drink these days. I try to eat more fruits and vegetables, more whole grains, less processed foods, less sugar-fueled snacks. But that doesn't mean I won't have a drink with friends and not  think twice about whether that's dangerous. If I stressed over every bite I ate; worried about each time I had a cookie or a bowl of ice cream, I'd probably subsist on bread and water. There's some interesting research that is examining chemo brain - the real and quantifiable changes in brain activity that some patients experience -- and its relation not to the chemo drugs themselves, but to the stress of the diagnosis.     

As with the threat of terrorism, the threat of cancer can hang over our head like a weighty, oppressive cloud, forcing us into a fetal position. Or we can accept the risk inherent in living, take a deep breath and process the risk as awareness, even alertness, but not anxiety. 

The tragedy in Connecticut filled me with sadness. The more I think about it -- its proximity in so many ways to the life we lead in Barrington -- the easier it becomes to overflow with that sadness. The same can be true with my cancer diagnosis. 

I read a story about talking to your kids about the tragedy which had this bit of advice: This may have been an act of evil but it's one event in an otherwise good world. It's what I believe. If I'm going to continue my optimistic  view of the world, it's what I have to believe.

--Michael

 Here's one of a few options for (Everything Will Give you) Cancer on YouTube.

Random Observations, December 2012

It's time to fall back on the blog chestnut: random thoughts and observations -- which means of course that I'm just not finding a thread to tie together my thoughts. I could blame it on the chemo but as it's Thursday and I'm as clear-headed as I've been in five days, that's a weak excuse. So we'll just dispense with the rationale and get into the observations.

I got a lot of positive response from the news that my chemo was working. That shouldn't be surprising. But the level of relief (measured in the digital lexicon of exclamation points, caps and emoticons) made me to do a mental double-take. I suppose that the option of the treatment not being effective was something I entertained somewhere deep in my consciousness; the chances of that idea escaping the stranglehold that was suppressing it were pretty slim. Whether optimism or naivete, I always assumed that the chemo would work. The reality, of course, is that high success rates are defined by the rare failure. And just to illustrate the point, when I was getting chemo, a young woman (young enough that she had a one-year-old at home) was getting news that her treatment wasn't having the effect they wanted. 

Hello neighbors, I have cancer. As more people know about my diagnosis and treatment, more people will know about my diagnosis and treatment. At a recent neighborhood gathering, one of my neighbors asked Stacy how I was doing. The rest of the group then asked for the missing information. I don't think it fazed Stacy; it certainly didn't faze me -- which is to say we've come a long way. 

I ran across this article about a British researcher and former cancer patient. Her tweet upon receiving her PhD had a familiar refrain to it. It started with a little flavor of a cancer center ad campaign ("Dear Cancer") and ended with a phrase that I've invoked at times -- "Take that."

Exercise is key. These past two cycles, I've made it a point, even on my most fatigued days to at least walk around the block, do a set of push-ups, walk to the bus stop and collect Noah, or some combination of the three. If this past post-chemo is any experience, it certainly helps. 

Salt lick anyone? One of my most insatiable cravings in the days after chemo is salty foods. I'm not sure why - a product of the fluid retention? The drugs? It just screws up my taste buds and many things seem unappealing. Ask Stacy about my aversion to juiced fruits and vegetables. Suleika Jaouad writes about the more intense effects chemo and treatment have had on her eating experience in the NY Times blog, Life Interrupted. (Thanks Andrew at My Lymphoma Journey, for highlighting the post) Once  again, I count myself lucky.

This seems a bit obvious but I'll say it anyway: Chemo is disruptive. For two days of actual chemo, there's a familiarity to the routine of bloodwork, office visits, trips to the dining pavilion, infusion, retrieving the car. We even squeeze in a lunch or dinner without the kids and this cycle, a trip to Ikea. But come Saturday, we descend into a holding pattern as we wait for the storm to arrive. The house is boarded up; we've stocked up on batteries and water and we go about our business as we watch the clouds move ominously closer. As much as we prepare, it's still a disruptive storm. Once it's passed, we clean up from its effects and celebrate the clear, blue sky -- but catch a glimpse of the long-range forecast and know that there's another storm brewing. Only two more storms. 

And staying with the metaphor, it's a persistent storm. Even after the skies have cleared, the occasional cloud or ill wind will blow by in week two, even week three, reminding me of its presence with a passing nausea or wave of fatigue. 

The movies are filled with images of sick patients, who despite how crappy they feel, muster up the strength to be particularly warm, caring, and patient with everyone around them. Remember, most movies are works of fiction. The fatigue seems to sap any lingering threads of patience, particularly with the under 12 age group. 

I've been starting to think about what happens after February. What happens when the chemo is done?  What happens if we make no more progress? What happens if we do make more progress? Do we watch and wait again every three months? Do we live on the edge of our seat waiting for lymphoma to return? Do we get to that place where hours and even days go by where cancer, my cancer is not the dominant thought in my head? And if that's the case: what do I write about? 

Perhaps the difference between now and a year ago is that I may be thinking (and writing) these thoughts, but for the most part, I'm not staying awake at night worrying about them. I'm learning, day by day, that I can't control the future - no matter how much anxiety I harness to try.

And finally, to leave on a more upbeat thought. It's Friday now (though the post started on yesterday morning's commute) one week post chemo and there is nothing like the weekend one week out. It's a blank slate of possibilities and even the mundane events (transporting kids to soccer practice, shopping, housecleaning) present themselves as unwrapped gifts waiting to be opened. 

Happy, happy weekend all.

-michael

It's Monday and I'm Blogging

This is a good sign. 

My post-chemo recovery has usually followed a consistent pattern: fine on Friday, a little tired Saturday, then a sluggish Sunday followed by still slower Monday. It's usually not til Tuesday that I can muster up the eyeball energy to look at a computer screen. (See last month's post for reference.) But today, I've even been able to  get a little work done -- nothing fancy, but just some email that required a slight dose of brain power. 

Good thing it didn't require much more, because I've been sitting here trying to string two solid paragraphs together and this is about as far as I'm getting. Ah well. I'm optimistic that tomorrow will bring a somewhat normal day with maybe the need for a few more breaks than normal.

Four rounds done. Two to go.

--michael

It's Working

I wasn't quite sure what to expect from today. Three cycles of chemo and I could feel the effects in ways pleasant and not so pleasant (nausea, fatigue, fuzziness) . But were the physical manifestations of the drugs merely unwelcome side effects or evidence of effectiveness.  In other words, was the chemo working?

After CT scans -- my first since beginning treatment -- and regular bloodwork this morning, I'm happy to report that the answer is yes. It's working.

The swollen lymph nodes in my neck are no longer palpable. The larger ones in my abdomen have shown "marked improvement." A few new, "subcentimeter" nodes were evident but other areas were "unremarkable." 

Or in non-radiology speak, the scans look "great" according to Dr. L -- and in Dr. L we trust. I don't say that lightly. Trusting your oncologist -- your entire care team -- is an important part of care. The cancer journey can be one full of serpentine roads, forks in the path, even the metaphorical red light. And as we motor along that journey, at times we're just the passenger in a vehicle driven by oncologists, radiologists, pathologists, nurses, and other cancer professionals who travel this road regularly. 

It's like traveling along in a foreign country where you don't speak the language. You see the road signs and the words look somewhat familiar, but you're not sure if the left turn ahead will take you to a restaurant or a rest room. So you ride along, putting the trust in your navigator that when they say, I'm going to take a left up here to take you a restaurant, ok?  You have confidence not only that the road will take you there, but also that the restaurant is where you want to go. You trust their decision, which is really your decision.

Last week, I wrote that I wasn't sure if I'd preset my expectations before the scans. I didn't. I decided to calibrate my expectations based on what I learned,  even though that's a little bit like answering a Jeopardy clue after you find out the right answer. The illogical part of me thought that maybe all the lymph nodes would miraculously melt away. But if that were the case, then we'd only be doing three rounds of chemo, not six. 

So here we sit in the infusion chair, beginning round 4 with the knowledge that halfway through the treatment, the drugs are working.

Not a bad day-after birthday present.

--michael

The Interwebs

The two scariest words in the medical lexicon are: The Internet.

Rest assured that whether you have a paper cut or a softball-sized mass visibly growing on the side of your head, some web site, some blog, somebody, somewhere on the Internet will confirm that your symptom could be a sure sign of some fatal malady. When I was first diagnosed, I surfed around a bit and decided that I'd limit my information gathering  to sites and people who I fully trusted.

Then last Thursday, my knee started hurting. 

Two years ago, I would have first dismissed this as a sure sign of an aging knee,  one-too-many surgeries, and perhaps, one-too-many marathons. I would have complained about it for a couple of days; obsessed about how I could have hurt it and anxiously wonder whether I re-tore my ACL. Then I would have Googled "knee pain" and found all kinds of interesting causes - arthritis, bursitis, tendonitis, cancer.  I would have thought it was cancer. I would have scheduled an appointment with my orthopedic surgeon -- only to cancel it two days later when my knee had healed itself with a little ibuprofren.

This time, I followed a similar mental trajectory. After wondering what I did to it, I checked my  chemotherapy information sheets for possible side effects. The Bendamustine sheet had nothing to report about knee pain. But here's what it said for the Rituxan sheet, under the heading of "Things that may occur a Few Days or Weeks Later"

1. Mild Nausea may occur.

2. Some patients may feel tired, also known as fatigue. . . Talk with your doctor or nurse. 

3. Rituximab may cause Tumor Lysis Syndrome (TLS). If you start to feel joint pain, swelling or stiffness, you should contact your doctor.

Oh, let's see. My knee is a joint. It's painful, swollen and stiff. 

So what the hell is Tumor Lysis Syndrome? Let's Google it. I didn't have to get beyond the descriptions on the results page to encounter this: "Tumor Lysis Syndrome is a life-threatening oncologic emergency."

I can deal with nausea and fatigue but would prefer to stay away from life-threatening oncologic emergencies. 

Luckily, I've since found out that TLS almost always occurs with large volume, aggressive lymphoma (not mine) with the first round of chemo (also not mine). This I found out from Dr. L, who responded to my Friday night email in exactly two minutes. (You ever notice how health  issues never present themselves in the light of day.)

Her recommendation was that I take ibuprofren.  

Two days later and my knee is back to normal -- life-threatening oncologic emergency averted --  and I'm back to my relying only on my trusted sources.

--Michael

What is Progress?

 The last thing I want to do is be critical of oncologists. For one thing, it's psychologically counterproductive. For another, I'm genuinely impressed with their ability and their demeanor -- not just mine but so many of the doctors that I meet at Dana-Farber. Indeed, one of the things that I love about my job is working with such a talented group of caregivers who are uncommonly both talented and nice.

Still, I'm struck by a quote I read attributed to a long-time physician and researcher. As he looked back on a long career he recalled that nearly 40 years ago, patients with a certain cancer would have months to live. Now they can look at them and say that they have 10 years and more... and it's improving all the time.

Is that good? 

If you're 85, sure. If you're 45? 10 years is better than 10 months but that's hardly great news.

Clinically and statistically, the improvement in survivorship statistics is remarkable. If I were talking about advances in my work, I'd put a big check in the progress column for that. But as a patient, any timeline is an unwelcome limitation. Progress is defined by many patients as a cure -- whether that means a never-ending string of checkups showing No Evidence of Disease or the chronic management of disease to the point where, put bluntly, something else gets you before cancer.

Comparing the patients' and clinicians' perspective, there seems to be a natural tension between the clinical classification of scientific progress and an often unrealistic expectation of a total cure. 

As an editor of magazines and other copy that often quotes oncologists, I'm always on the lookout for these instances where the doctor is unintentionally cavalier with the numbers, knowing that for some readers those figures seem scarier than the aggregated statistics that they are. 

The Cancer Forest

 I've been at a bit of a loss for blog posts this past week but if I look back over the last three months, I find even that is a familiar pattern as I cycle through the "good" weeks -- about as predictable as lingering nausea and fatigue.

When I was first diagnosed and in watch-and-wait mode, the goal was to progress from days in which cancer was part of every waking thought, to a point at which a day would go by and the thought of cancer hadn't even drifted into my view. We were making our way to that goal. 

Being in active treatment and working at Dana-Farber Cancer Institute combine to make that goal somewhat impossible. But I'm happy to say that during a busy Thanksgiving weekend full of family, food and football (with a couple of runs thrown in for good measure), cancer was about the last think I was thinking about. That's good, but it makes it hard to post to a blog about cancer. 

Now as I enter good week #2, I'm in a decidedly weird place. While I'm thinking about the logistics of the treatment-- what time do I need to leave? Do I have all my scrips? Have I moved all my meetings off those days? etc. -- I'm not thinking about the treatment itself. I'm focused on the narrow path that lies immediately ahead, but not focusing on the larger cancer forest, or jungle, perhaps. 

Occasionally, I find my hand making its way to the right side of my neck where I first noticed a swollen lymph node nearly two years ago -- ground zero, if you will. I feel around, all but unconsciously confirming what I've felt since after the first chemo round;  that the swollen lymph node has receded, beaten back by three months of chemo and Rituxan. And less subtly, cancer makes itself know occasionally even in good weeks when a mild bit of nausea will show up at my door, an unwanted visitor who lingers for a few minutes -- enough to remind me, but not enough to make a lasting impression.

For the most part, though, I'm thinking about what lies ahead in February and beyond. Treatment cycle four begins on 12/6, which means I'm three cycles and just about 2 months to the end of treatment. It will come as no surprise that making it beyond the halfway mark is psychologically critical for me -- like being beyond mile 13 in a marathon. I know now not only that I've less left than what's come before, but I also know what effort the remainder of the course requires. 

This next round begins for the first time with imaging. For the first time, we'll take a look to see what all this effort is doing to the various bits of lymphoma growing inside me -- a somewhat more scientific gauge than my two fingers checking my neck. I'm not really sure what to expect from the CT scans (well, I know what to expect from the scans themselves -- they're painless and easy. The hardest part is being hungry and waiting my turn.)  Should I expect all the affected nodes to have shrunk down to normal size? Should I expect the favorite phrase: No Evidence of Disease? Or should I have more modest expectations? And what is the course of action depending on what we find out?

This leaves me with a small dilemma. Should I ask Dr. L what the range of expectations are ahead of time or wait until we see the results and calibrate my expectations accordingly? 

I think I know what I'll do. 

--michael 

Vulnerability

I was planning on writing about exercise -- about how I made a conscious effort to do some every day during the first week and how that really seemed to help.

And I was going to mention our new push-up regimen that my boys and I do every night. I had hoped to get to 50 by the time I turn 50 but I'm running out of time.

And I was also going to talk about some long-term running goals. (No. No new marathons in sight, but maybe a half...)

But instead I ended up watching this Ted talk video which I found on Momastery. It's a longish video (20 minutes) but if you watch it, you'll find out why it's been viewed six million times. It's a very interesting topic which may not be specific to cancer care and such, but it touches on some themes that I've written about -- and on topics that I think are worth thinking about.

Happy Thanksgiving to all. I know well what I'm thankful for -- and all your support is at the top of that list.

--Michael

Reentry

On May 5, 1961, Alan Shepard became the first American to leave the earth's atmosphere and experience space travel in his 15-minute sub-orbital flight  (don't ask me why I still know this but I do). And once a month, I get to experience similar effects . . .  minus the exhilaration, thrill, and sense of awe.

What I'm left with are what I imagine are all the uneasy and uncomfortable aspects of space flight --  motion sickness, dizziness,  and a vague sense of being untethered from earth. On chemo Thursday and Friday, the steroids and anti-nausea meds carry me through the launch of the cycle, but by Saturday evening as they fade away, I float off into my own zero-gravity world. I've written before about the fog, but it's the disconnectedness that I've noticed most this last month. On Sunday and Monday, I hover about, unattached to any schedule -- no work, no school pick up or drop off, no bedtime, no wake-up time, no chores around the house, no responsibilities. I just sort of exist - as the rest of the world, grounded in their daily routine marches on. 

We are creatures of habit - and, in particular, I'm a creature of activity. When I'm lacking both, it's downright disturbing. And along with the fatigue and fog of post-chemo, it's this mental uneasiness that I always look forward to shedding.

Tuesday marks the beginning of my gradual reentry. My mind focuses and and I return to work, but from the virtual office of my dining room table. That helps me re acclimate to a degree, but I don't start feeling the full pull of the world until Wednesday. At times, it's a bit turbulent, the reentry. But as I return to the gravitational forces of a busy work schedule, a regular commute, a dinner and post-dinner routine complete with dishes and bedtimes, I find my ground -- the terra firma that is my routine. Eventually, I let any notions of disconnectedness drift harmlessly and silently away. 

Until the launch of the next cycle.

--Michael  

       

Round Three, Almost Over

I was going to post a link to the Boomtown Rats video, "I don't like Mondays" but it seemed a bit of an exaggeration. That song was inspired by a girl who shot and killed students at a school playground across the street from her home. When she was asked why, she reportedly said, "I don't like Mondays."

For me, it's not quite that serious but I still don't like Mondays. They continue to be the worst day of the post-chemo cycle. This round was about like the last. By Monday evening, I was feeling more human and today, mostly human except for some on-and-off nausea and a little fatigue. Still managed to work a full day from home.

Not much more to say. Just wanted to do a quick update. Back to work tomorrow and back to some semblance of normalcy.

 --Michael

p.s. Oh, okay, here's the link to the Boomtown Rats video. It's the overly dramatic live version from 1981. Worth watching just for the hair.

8 Random Observations After Round Three

Not sure what it is, but I've been thinking in lists and numbers of late it seems. So while the steroids are still coursing through my veins, keeping the fog at bay, 8 random observations about my treatment.

• I'm more productive sitting in the infusion chair than I am in my office. It's kind of like flying. When I travelled often for work, I longed for a 3-hour flight to have uninterruped thinking and working time.
  
• A joke: What do voting and getting chemo have in common? You don't need an IQ test for either. (Inspired by idiotic conversation of two patients in the waiting room. Sigh.)
  
• Smiles are always good. Laughs even better. Seriously, there must be research that actually bears this out. 

• Twenty years ago, if I wanted to update people real time, I would have had to find a payphone at the hospital.
  
• And if I wanted to recap the events afterwards, I suppose I would have written a letter.
  
• Three done. Three to go. Bloodwork looked good yesterday (in fact, hemoglobin/hematocrit hasn't looked this good for 3 years, probably.)  Here's to that continuing. Next month, we get bloodwork and scans before treatment.

• I've seen the bill for chemo (not just my copay, but the whole cost) and I don't care where you stand politically but thank God for healthcare insurance, and for two important considerations: no preexisting condition exclusion; and no cap on lifetime insurance coverage.
  
  

• And, finally, having  heard the old, cranky wife of my infusion neighbor who, among other things was complaining that he was taking his pills one at a time (he was having difficulty swallowing), and was yelling at him because he wanted to go kayaking... NEXT SUMMER, it reminded me that I have an incredibly supportive wife, family and friends. Thank you!

--Michael

Top 10 Perks of Being Treated for Follicular Lymphoma

Cancer is serious stuff.  I know that.

There are many aspects of the disease that just can't be sugar-coated. And there are many people who have both a more challenging diagnosis and a tougher treatment plan than I do. Yet in my case, a diagnosis comes with some silver lining;  a deeper connection with friends and family, a stronger sense of gratitude, and even a renewed sense of purpose. Those exist side by side with the uglier side of the disease. That said, these larger truths are somewhat expected, at least in hindsight. Blogs, and other outlets (including this one) are filled with so many stories of deeper appreciation that it becomes almost cliche.

As I begin my third chemo cycle tomorrow, I've also noticed a few unexpected benefits. Granted, I'd gladly give up all of these if it meant I could get rid of the cancer.  But since I can't, to lighten it up a bit, here are my Top 10 Perks of Being Treated for Follicular Lymphoma (with apologies to Letterman). 

# 10. Legal use of steroids. Get that buff feeling without working out,

# 9. Emails from friends you haven't heard from in 10 years. 

#8. Frequent e-mails, texts and calls from close friends and family

#7. Playing the chemo card - "Sorry, I can't make the 3-hour chimes concert. I need a nap."

#6. Discount hotel rates in Boston (okay, only at one hotel, and only if you have appointments)

#5. Being the only one in the room who can quote Arnold from Kindergarten Cop  - "It's not a TUmah"

#4. Six hours of football watching with no guilt 

#3. Get out of dentist free card

#2. Goodbye insomnia.  Hellooooo Ativan! 

And the number one perk of being treated for follicular lymphoma is...

 Being one step closer to no longer being treated.

Here's to being halfway through treatment after this cycle. 

-- michael

Home-Field Advantage

I met up with some old coaching buddies last night. Over the course of a couple beers, we caught up on kids, life, and of course health. Talking about treatment has become easier for me as I move through it; it's now a part of my routine, like commuting,  working, and soccer practice. I look forward to the days when it's no longer part of my routine. But while it is, I continue to be not necessarily shocked or amazed, but pleasantly suprrised at the acts of kindness and support from people near and far -- like the cookies a friend dropped off last night, or the emails from people with whom I haven't spoken in more than 5 years, or 10 years.

Sometimes it's almost embarrassing to accept the amount of support I feel, but more often it feels like I have a whole stadium of people on my side. In the debate about "battle" imagery in describing the "fight" against cancer, I've heard some people object to its use for fear of making patients feel like they've let their friends and family -- and their care team -- down if they don't respond well to a treatment. As if the poor response is some fault of their own.  I get that, but when I think about the encouragement, prayers and postive energy I've experienced, I can't help but think of it metaphorically as a battle, or a tough sports match, and importantly, one where I have the home-field advantage. 

Next kick-off is Thursday about 11:30.

--michael

Dual Identity

Hurricane Sandy spared us. We had high winds and rain for the better part of a day, but other than a neighbor's fence that was pleading to be put out of its misery, the damage here was non-existent. One casualty of the storm, however, has been the blog, but in the most roundabout of ways. 

After more than nearly 20 years of writing and editing in mostly a communal cube setting, I've been conditioned to writing in a certain environment. First off, I must have music. Rock, classical, jazz, anything. Second, I must have headphones. The combination of the two creates a little writing cocoon where I can tune out the world and tune in to the creative process. Sometimes I can simulate the headphone part if I'm home alone and can turn the speakers loud enough, but the number of times that I'm home alone in the past oh, 11 years, I could probably count on one hand. That means there are usually three times when I can simulate my ideal writing environment -- the train ride to work, the train ride from work, and evenings when the boys are in bed. 

Enter SuperStorm Sandy. With the boys home from school for two days and suspended train service, there's been no time to get in the right writing environment. Until today. 

So here I am with headphones in and iPad out thinking about a couple of chance encounters today.

I took a moment out of my day to drop off leftover halloween candy at our Patient and Family Services center. And while I was there, I refilled a couple prescriptions at the pharmacy on the second floor. Convenience is one of the benefits of being both a patient and employee. As I left, I checked my email and was hit by some sad news. A young patient who we've featured in a variety of communications efforts passed away yesterday morning. I don't know how old she was, but the picture that accompanied the email showed a young woman in her late teens or early twenties with a beautiful, vibrant smile. It's a sad and sobering reminder - even if there are more than 400 types of cancers, all with differing outcomes influenced by a host of factors. I sighed a deep breath and headed out the door on my way back to my office and was greeted by the sight of a line of three ambulances curbside. Waiting to transport patients somewhere? I have no idea. But side by side, the two encounters were a stark reminder of what cancer can be -- and of one of the principal drawbacks of being both a Dana-Farber patient and employee. Few other communications departments get the news of one of their "sources" dying. 

As I continue to work at Dana-Farber over the years, I'll constantly be reminded of the advances researchers are making and the setbacks clinicians are facing. It comes with the territory. 

So does the challenge of keeping my identities separate. Men often make lousy patients, as we know. I think that's because men like to think they're in charge while patients are by definition not in charge. We're  under the care of someone else -- or many others, a care team,  caregivers. Patients dont know all the answers; sometimes we don't even know the questions. We're not in control. Part of being a good patient, then, to me is accepting that you need to be cared for - in ways small and large. That's all well and good, but it's a mindset that runs counter to my Dana-Farber work identity - which, as a director of a team of 16, I hope is someone who is in control, someone who knows tHe answers, or certainly the questions.  It's hard to be subtle about my treatment even if I wanted to, as I disappear for four days every month and then come back to work with a nearly lost voice. Bu by being open about my current state (that is, that I'm in treatment), I risk blurring the line among my team and coworkers who see me as both Michael the patient and Michael the director -- or worse, who see me as only Michael the patient. I walk the fine line of having my patient experience inform my work without turning my input into a focus group of one. 

--Michael

Gratitude, Take Two

Matthew got his cast off his ankle on Monday. He is working out his stiffness but is doing all the things he used to do - showering without a bag on his foot, playing with his brother outside, running -- doing the normal things that sports-crazed 11-year-olds do. Monday was also the beginning of one of my two good weeks -- when chemo and its side effects are, if not a distant memory, just faintly visible in my rear-view mirror. Between Matthew and me, it meant a a return to life as we know it. 

The old normal.

It's good to have the old normal back. When life is turned a bit upside down by chemo, I often feel like we are plodding silently along a desolate stretch of highway. The scenery doesn't change; there are no exits, no towns, no houses, no other cars on the road. We are just the four of us in the car, driving down the endless straight highway, knowing that we need to keep moving forward. We sleep. We wake up. Another milepost passes by. We eat. We talk. Another milepost passes by. And then we see hazy signs of civilization in the distance. It slowly draws near. And then, there we are, back in the city of life.

But that's not what  I wanted to write about. 

A shot of the healing garden on the third
floor of the Yawkey Center at Dana-Farber

Yes, I'm grateful for the old normal becoming the new normal again for the next two weeks. I've been thinking, though, about how grateful I am that nearly five years ago, I came to Dana-Farber to work. I often follow my gut. Sometimes that works. Sometimes it doesn't. My recent foray into Providence was evidence of the latter. My decision to join Dana-Farber (and then rejoin it) was the former. I knew that the position would be different from what I've done before. I  also just knew that it was right. (Malcolm Gladwell's book Blink offers an interesting take on decision making.)

If I hadn't take that job, what would have happened? Would I be here for my care now? Doubtful. I would have likely followed my doctor's lead which might have landed me at Beth Israel or another Boston hospital, or perhaps I would have stayed in Rhode Island. Dana-Farber wasn't on my radar 5 years ago. Cancer wasn't on my radar...  until something put it there. It seems too important for it to be coincidence.

There are plenty of good hospitals and care centers out there; we're a bit spoiled here in New England. Still, none of them compare to Dana-Farber. I recognize that I'm at least doubly biased here, but I'm also intimately familiar with the care model, with the sheer brain power of the research and clinical staff, with the level of compassion, and with the intense focus and commitment of the people who work here. What makes it even more providential that I landed here as an employee before I became a patient is that if there's one place that you would think that understood the logistical challenges of working through treatment, it would be here. I sometimes try to imagine how I would manage the work and travel schedule that characterized my life in the years immediately preceding Dana-Farber and I don't know that I could have done it. 

Sometimes, the day-to-day work involved in a large, non-profit organization can frustrate me. But I'm grateful that Dana-Farber was there for me each time that I needed it. 

-michael

A Normal Weekend

Nothing overly deep today, but it's been nearly a week since last post, so some quick thoughts.

The second weekend after chemo is my life-returns-to-normal weekend. While the fog lifts by Tuesday, the effects linger like a bad dream that you can't quite completely escape; just when you think it's out of your memory, it appears again as a momentary glimpse of nausea, or tired legs that shouldn't be tired.

In some ways, I was smarter this time around. I managed my work schedule much better. And I kept my weekend plans to a minimum. But in other areas I'm still learning. My two biggest challenges are: sleep and hydration. I've always been able to get by on about  6-7 hour of sleep but in the first two weeks of chemo cycle, that just doesn't cut it. A standard eight hours is mandatory if  I want to manage the fatigue. Hydration (or lack of it) exacerbates the fatigue. Of course, the problem with hydration is that I'm already waking up every 2-3 hours every night in the first few nights because of all the fluids that I've retained.

I'm learning too, the differences between the fatigue which I classify as LF or NLF (limiting fatigue or non-limiting fatigue). Take yesterday, a glorious fall day in New England with warm temps, a light wind and crystal clear skies. After a short bike ride with Noah (Matthew is still in his cast until, we hope, this morning), my legs felt a little tired. Keep in mind that Noah is 8 and we only rode about 2 miles, with a long break halfway through to watch a little local soccer action (go Leila). So with an hour and a half to go before the Patriots kick off, and the temperature still hovering around 65, the question was: do I interpret the mildly tired legs as a need for rest, or as a need to run? LF or NLF?

I ran.

And after two quick miles, I knew I made the right decision. The running was easy. The music was good and the legs were not an issue. And ever since the run, I haven't felt a bit of fatigue. Whether that's the exercise, or simply the post-chemo calendar turning, I'm not sure, but I think at least part of it is exercise driven.

We now enter the two plus weeks of feeling good until next cycle - hopefully with several good runs in there.

-michael

Fog

The yellow fog that rubs its back upon the window-panes,
The yellow smoke that rubs its muzzle on the window-panes
Licked its tongue into the corners of the evening,
Lingered upon the pools that stand in drains,
Let fall upon its back the soot that falls from chimneys,

-- The Love Song of J. Alfred Prufrock

So we start to see a pattern. 

Chemo days (Thursday and Friday) are easy. Clear-headed, rested, energetic, even. I even have the wherewithal to post once or twice.  Saturday morning is fine, but by the afternoon fatigue sets in. Still coherent and relatively clear headed for most of the day, but by Sunday morning, the fog starts rolling in, thick and heavy.

Inevitably and unavoidably. 

When the heaviest fog is settled in, it's hard to do much of anything. The world seems coated in a a thick sheet of plastic -- like those big ugly sheets that we put on windows in our poorly insulated college apartments, Nothing is quite in focus. Reading is strained; even watching a movie or TV can be uncomfortable, particularly if there's an unsteady camera or a lot of quick cuts. Thoughts don't quite make direct connections - at best, they reach their destination after a long layover waiting for storms to clear.

And the frustrating part is that there's nothing I can do about it -- nothing Stacy can do about it -- but wait it out as it thickens over night, and settles in for a long Monday.  

I started writing this Monday evening when the fog began to lift. I could concentrate on a screen; have a conversation, read, even write a bit. All of which was relatively impossible on Monday am. But it took me about 45 minutes to get two paragraphs written. 

So what do you do? This is what cancer treatment is. You get yourself sick so you can get yourself better. And you remind yourself that this is a mild treatment. It's a couple days of fog a month for 6 months. Two tough weeks in the course of half a year. 

I'm two times through the cycle. A third of the way there. As amazing as the body is in its resilience, the mind can be even stronger. By next week, the after-effects of last week's treatment will have long faded, and my memory of them will fade, too. Already now, on Tuesday evening, I can feel my thoughts shifting to how quickly I rebounded  -- how I could walk down to the bus stop to get Noah from the bus today; how I was able to work on my computer most of the day --  and not how tired I was on Monday. 

The November cycle will come. The November cycle will go and I'll bounce back in plenty of time to enjoy Thanksgiving. Then December and the anticipation of the holiday season to get me through. And then, well, then we'll have four in the bag, and we hope, just two more to finish.  

Thanks to everyone for the recent well wishes. Even if I'm not the best conversationalist when in my fog, I appreciate all the thoughts and positive energy.

-michael

The opening quote is from my favorite poem, T.S. Eliot's The Love Song of J. Aflred Prufrock. It begins like this, (which also sets the tone for me these last few days).

LET us go then, you and I,
When the evening is spread out against the sky
Like a patient etherized upon a table;

A Few Pics from Round 2, Day 2

The day begins in the Dining Pavilion -- if I knew I had time,
I wouldn't have had a bagel earlier and instead had my favorite,
a freshly made omelet. Next time. Instead some fruit and...
(see next photo)

Banana, my new fave, Odwalla C Monster and free coffee -
brought to me in my chair.  

IIt may be gray, but I've got the corrnerroom surrounded by wiindows.
 A little ColdPlay on the shuffle, a little blog in front of me. Not bad.

Sara - my infusion nurse for all four days so far. Note
the protective gear as noted yesterday!

Blogging from the (Infusion) Chair

 A funny (or at least to me) story about infusion. When I first started at Dana-Farber, I remember people talking about infusion all the time and it took me a couple of weeks before I realized that chemo equals infusion. Chemotherapy is the use of drugs to treat cancer, while infusion is the way in which the drugs are delivered. There is something called oral chemotherapy which involves taking pills versus having the meds infused.

 

Anyway, cycle 2, day 1 has started and as you see from the pic above, we had a room (or chair) with a view. Here are some general observations.

• Dana-Farber is a world-class cancer center. Some of the best doctors, nurses, researchers all together in one place to focus on cancer. I love that. It's why I work here and why I chose Dana-Farber for my treatment.  What I love more is how everyone makes you feel when you come here. It's not just that they smile and greet you by name, at every step of your journey. It's not just the warmth and compassion that you can hear in their voice and see in their eyes. It's the way they treat you. In a world where healthy is the normal and you are the odd-man out; they treat you like you're normal -- as a patient, sure, but as a normal human first. 

• I just got a Get Out of Dentist free card. No dental work for the entire six months. Awww. Probably should still brush my teeth and floss though.

• Last month, infusion started at 10:30 and we left after 6 pm. Today, we should be done by 2. Woohoo!

• I have two Dana-Farber identities - patient and employee. Today they met. Barbara, my nurse practitioner who I saw this morning just came back from Rwanda where DFCI just opened a clinic with the Rwanda Health Ministry. We spent a good part of my visit with her this am to talk about her writing guest blogs for our Dana-Farber Insight blog.

• The infusion regimen begins with just plain old fluids and then we know we're onto the real stuff when Sara (my infusion nurse) comes in with the gloves and gown. That protects her from the chemicals that are going into my body. Ironic. 

1. 
   

•  Oncology is a tough career -- and when you ask doctors and nurses about why they pursue the career, they often talk about the close relationships they form with their patients. As I go through round 2, I get it, more than I ever could before.  It's not just a closeness, but almost a possessiveness that I feel. Sara is my infusion nurse. Dr. LaCasce is my oncologist. I don't know the nurse who took my vitals, but it's the same woman all the time. Barbara is my nurse practitioner. The phlebotomist is mine too. 

• So it's no surprise that I was very glad to see Dr. LaCasce when she  stopped by a few minutes ago to check up on me. There was no clinical need to do that, but since I saw Barbara instead of her this morning, she just wanted to see how I was doing.

It's likely round 2 will follow the round 1 routine which means by Saturday night/Sunday am, I'll be starting to enter fogland, which occasional excursions into nauseaville. I plan to take it easier this go round. If the fog lifts enough, i hope to post something again this weekend.  
--Michael

Running, the wind and Coldplay

Like well-crafted stories, good runs have a natural arc. The first mile is almost always a chore as my body gets used to the shock of running. Somewhere deep in my brain, I sense a bored sentry dropping his magazine and springing into action, suddenly aware that we need more oxygen, more blood flow.

This takes about 5-10 minutes. Then I settle into a pace and the running is, if not effortless, pretty comfortable. Until the last mile, which is a mixture of anticipation and fatigue.

Some runs are better than others; some are longer than others,  but even so, the arc is always there, with just different degrees of difficulty.

For the first time since treatment began, I was able to get out two runs in a row this weekend. Yesterday's was more difficult as the standard starting struggles were exacerbated by a strong headwind and a lack of pre-run carbs. But I muddled through, found my pace, and as I made my last turn, I picked up the pace for a last quarter-mile kick, just as Coldplay's Fix You shuffled into rotation on my iPod. As I lengthened my stride, the thought: Take That, Cancer, went through my head. It's not that I'm running because of cancer, but every once in a while, it feels good to prove that I'm fine, cancer notwithstanding. (Fix you, incidentally, is not only one of my favorite Coldplay songs, it was also our anthem when we were doing home physical therapy for Matthew's broken elbow.)

This morning's run, on the other hand, was a breeze (must be the company). But regardless of how easy the runs, they were both great -- because fast or slow, easy or hard, I'm just grateful to be running. I said earlier that I tend to walk fast. I also like to run fast. It may take a moment or two for my engine to get started, but when I get a full head of steam going, it's really a magical feeling. My feet feel like they barely touch the ground. Few things make me feel as alive as a full-out sprint. It's a time when I'm thinking about anything except the feeling of running. I'm in the moment. 

And while I really don't like running in the wind, I'll gladly run when the weather is otherwise extreme. Rain, snow, cold, heat:  I don't mind them. In fact, I  kind of like them. Whether it's jogging through a warm summer rain or a quiet steady snow, it makes the moment even more vivid.

--Michael


Here's the Coldplay video for Fix You. If you're not familiar with it, stick with it for a couple minutes-- and sorry for the ad at the beginning.