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