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.

"Can I have scotch, doctor?"

"Only if it's good scotch."

Beyond that humorous line, this post in the NY Times Well blog is a beautifully written piece by a woman, an English professor, and an ovarian cancer patient. Thanks Andrew for referring it to me.

I did, actually, ask my nurse practitioner if I could drink while undergoing chemo (well, not while actually being infused, of course). And, if that's not a sure sign of feeling better, I'm not sure what is. The short answer is yes, I can drink alcohol, in moderation. An occasional beer or glass of wine is fine, but alcohol can lower blood counts (at least that's what I understood - more biological-savvy people feel free to correct me) so doing kegstands at a frat party might not be wise.

Gearing up for round two next week. I think I'm sticking with comedy for entertainment value - and might be adding Fawlty Towers - a short-lived John Cleese British comedy series - to my collection. Thanks Lia for the email which reminded me of the show.

In the meantime, looking forward to a three-day weekend with several runs, some football, some apple picking, and at least one blog post.

--michael

The Post-Chemo Commute

I tend to walk fast.

I like to think it's the New Yorker in me, but the truth is, I'd probably walk fast if I was in Savannah or Key West which are about the strolliest place I can imagine. When I'm taking the train to work, as I do most days, the walk from the Back Bay station in Boston to the Copley Square T stop is about 4-5 minutes. After a two-stop T-ride, the walk on the other side is a little bit longer, about a half mile from Kenmore to my office. That's 7-8 minutes on a good day.

Up until the other day, about my only commuting concerns were whether the train would be on time, and if the wifi would work. On the Tuesday after chemo, though, I remember coming up the escalator at Back Bay and walking slowly out of the station and pausing. 

I could see my destination, but the thought of walking there was daunting.

The walk from Back Bay Station
 (at very top  left of image) to Copley T
 Station (behind the camera). The Boston
Public Library is the building at right.

I sighed and began my slow trek. Speed walking commuters passed me on either side. Small children passed. People on crutches breezed by me. Tortoises, snails...  you get the idea.  I eventually made it to the T and to Kenmore where the prospect of a half-mile walk was nearly overwhelming. 

It was more mentally taxing than physically challenging. Two and a half years ago, I ran the Boston Marathon in 4:09 (take that Paul Ryan) but  now the thought of a slow half-mile walk was making me pause. Literally. That's a bit demoralizing. 

Stacy suggested I take a cab in those situations. But of course, I couldn't do that. Why not? Well, you know why,  So I trudged to the office slowly and settled in. That was Tuesday. Wednesday, I worked from home. Thursday and Friday I drove.

Part of the Hubway bike station
across from Back Bay. They ride
like trucks but beats riding the T.

It's now two weeks since that challenging commute and I've been back to both the train, and for the past week and-a-half, my brisk walk commute.  I've even ventured back onto my Hubway bike on several days. And this past Sunday, I returned to my favorite routine, a morning run and chat. (Thanks Mr. B.)  I may not be ready to tackle a marathon (maybe there's a half marathon race in the future), but being able to go out for a 3.5 mile run at my normal pace was important.

Beyond the joy that I get in running, it helped me reestablish my routine. We all know kids crave routines, but I think they're equally as important for adults. They help define normal. And when your normal is turned upside down with the new routine of cancer treatment, the return to the old normal is something to appreciate. Knowing too that I'm able to bounce back to this will help me deal with the malaise of the first week post chemo. I'll have the wonderful boredom of a normal routine to look forward to.

-michael

p.s. - I have no interest in running for office....ever. But in the interest of full disclosure, I believe my official BAA time in 2010 was 4:11. I stopped for about 2 minutes to wait to use a port-a-potty and don't include that in my personal time recording. I ran a 4:09 and I'm sticking to it.