Friday, January 30, 2009


Gentle readers: Yesterday was a day to retrace some steps from my recent past, and in so doing to find the line of sight I've been seeking on my future.

The day started with a half day at Bridgespan, where I worked from 2003-04 and met my fellow blogger and lovely wife. The senior management team at MY TURN has been through an intense month of scenario planning with the help of my old friends and colleagues. Like every other enterprise on the planet, we're trying to figure out how we navigate the depressing recession. Going through several increasingly specific iterations of our loftiest expectations and worst nightmares opened a lot of eyes. Bottom line is that after a month of hard work, I have a clear line of sight to how we are going to get through the next 24 months. We'll be smaller, but we'll also go deeper and deliver consistently strong results to the kids who we do serve. We'll have to swallow some bitter medicine to get there, but I am now clear that there is a there to get to, which is more than half the battle.

Do you feel a metaphor coming on? Yes, so do I.

I picked up my car and drove over to Kenmore Square to run a few errands and found myself driving past the Harvard Vanguard on Brookline Avenue, a place that makes me shudder with a combination of pain and indignation. Pain for the two CAT scans I had there back in October and all that they ultimately revealed. Indignation as I recalled the surgical consult with the most socially inept doctor in Boston, the one who walked into the session and while looking down at the chart told me in a matter-of-fact voice that I had lymphoma, in a tone that you might use to tell someone that their front tire was a little low on air. Needless to say, that was the end of that medical relationship ("It's not you; it's me. No actually, it is you.").

All in the past, Steve. Shake it off.

I continued my drive out Rt. 9 to Hammond Pond Parkway to Beacon St. and finally to Newton-Wellesley Hospital for my half-way point CAT scan. I spent two hours drinking small sips of an orange-flavored barium shake before heading into the room with the SciFi machine where they inserted an IV into my arm and then injected contrast die while a pre-recorded stern male voice commanded that I INHALE AND HOLD as I was robotically passed through the machine and then allowed once again to BREATHE. Ten minutes later, I was on my way home with a sore arm and a stomach full of barium.

Today, I woke up early and hopped on the bike for 18 miles of intervals. Lest you worry, I am continuing to "dial it down" thanks to my low red blood cell counts. I am just happy to get through these sessions and not completely lose an activity that has been my passion for over 20 years now. I wish I could cover the 400 miles I rode last January, but I will count myself lucky to have made it through three rounds of chemo and still be up on that horse.

OK, now for the good stuff, and I hope I havent' already lost you with all of my digressions and botched metaphors. After breakfast, I headed over to my oncologist's office, where I learned that my white blood cell counts are normal, my platelets and RBC are still low, blah, blah, blah. My doctor then pulled up my CAT scan results and asked slyly, "You don't want any good news today, do you?"

He read through the technical jargon: "No evidence of lymphopathy. Nodes normal." Translation: I am in remission. There is no evidence of lymphoma in my system. The treatment regime is working.

So, of course my first question was if I could skip the next round of chemo and have a Guinness instead. No such luck. But, to be halfway through this and not simply hear that the lymphoma was on the retreat but that all evidence of it was GONE from my system, I don't think even an optimist like I was expecting such news.

So, there are still three more rounds of chemo awaiting me, including the second in-hospital treatment next week with the ERAS-C and the screaming patients keeping me up all night. But rather than lying awake at night asking WTF, I will lie awake saying "Holy shit! We're going to do this!"

There are many rivers to cross, as Jimmy Cliff once sang. Or to use my bicycling analogy from an early post, we've just made it through mile 25 of this 100-mile race and my split suggests a personal best. Rounds 4, 5 & 6 represent the next 25 miles. Halfway there come mid-March. And then some more big hills over the last half-century as they extract my marrow stem cells and transplant them back in.

As I've written before, we'll continue to ride this race one mile at a time. But just as I wrote about MY TURN at the beginning of this post, I can now say that I have a line of sight on what was previously visible only through the lens of faith. There is clearly a there to get to.

Wednesday, January 14, 2009

Pork CHOP Report

Greetings from frigid Dover, where the temp is a fast-plunging 15 degrees with a 20 mph wind out of the northwest . Should be below zero tomorrow. Good thing I'm inside on my comfy chair with my sleeping bag and Lucy to keep me warm while I work from home and recharge the day after Round 3 of chemo.

You'll recall from earlier posts my mantra that "boring is good" right now. If that's the goal, we're doing exceedingly well. After those crazy-low red blood cell and platelet counts of a few weeks back, the numbers came back up to normal and then some by last Friday, so no transfusions, no spontaneous bleeding. I'm certainly more run down due to the RBC effects on my ability to process oxygen. I've continued to work out, but any thought of "kicking ass" on one of those Spinervals DVDs has been replaced by the old Nike slogan, "Just do it." So I've dialed back the intensity of the workouts by shifting down a gear or adding an extra minute of recovery in between sets, but I still got in 19 miles yesterday morning before beginning the second day of this round of chemo, and that felt great, both physically and psychologically.

For those of you keeping score at home, I have two different chemo regimes, which alternate every 3 weeks for a total of 18 weeks. So the odd-numbered rounds (1, 3, & 5) feature the R-CHOP drugs, administered at my doctor's office, spread over 2 days. The even-numbered rounds (2, 4 & 6) feature the ARA-C drugs, which require the 48-hour in-hospital treatment. The R-CHOP tends to make me feel more nauseous but the in-hospital stay leaves me massively sleep deprived, which is worse than the drugs.

All I can say about this round is, "so far, so good." While I don't have a voracious appetite, I don't have the hiccups and acid reflux that did a number on me after Round 1. I got a good night's sleep last night, and I was able to work on my laptop at the oncologist's for most of yesterday's treatment, which is good, because as I wrote earlier, running a nonprofit is more challenging than cancer.

Because I told the nurse to give me the "Lamb CHOP" in Round 1, I asked her to go with the Pork CHOP yesterday, specifically one with a bourbon-maple glaze. The other patients groaned in either misery or appreciation at this image, but I don't think I hurt anyone's appetite. One of the ladies across from me ate a large steak & cheese sub while getting her drugs. More power to her.

The best thing about the drugs you get is the massive dose of Benedryl they give you on day 1 with the Rituxan ("Mighty Mouse"). This dose conked me out for over an hour on Monday, and I told the nurse that it had the quality of a 12 year-old single-malt: "Please pass along my compliments to the pharmacist."

Today, I have an all-morning conference call for work and then go back to the doctor's for the Neulasta shot which will stimulate my white blood cells and give me that lovely bone pain seven days hence. I have a CAT scan at the end of the month to check my progress toward eradicating the lyphoma cells (there are some barely detectable lumps in my neck, but the ones under my arms and in my groin have entirely disappeared already). I'll be in for Round 4 at Newton-Wellesly hospital the first week in February.

But that's for another day. Right now, all I can say is Hey, I'm halfway through chemo!!! I'm still biking, still eating, still working and still a wise ass. We're going to do this, people. One mile at time, but we're going to do this.

PS: A number of you have had some difficulty figuring out how to subscribe to the blog using the "Follower" function or using RSS or Atom feeds. I've just added an easier way to subscribe, via email. You can activate it by clicking the box in the right-hand panel below. If you're on Facebook, you can also follow the links at right for instructions on how to get updates from this blog fed into your Facebook page. Hope this helps!

Tuesday, January 6, 2009

It was QUITE the vacation...

Just had to respond -- and NO not about the pumpkin pie (because I love that stuff) -- but about Steve's comment about my being back from Florida to take care of him. He made it sound as though I had a long, luxurious, restful trip; here's the truth: I spent a whopping 48 hours on the ground, 5 of which were spent racing around Busch Gardens with Theo and Lucas! I do think that $10 per hour for the duration of my stay to be in 70 degree weather maybe was a pretty good deal after all...

So, I am trying to take care of Steve, but there are two issues with that:

1) He is actually being incredibly reasonable all by himself. Really, he is NOT pushing too hard and is indeed listening to his body... last night he went up to bed at 8:30, which I don't think I've seen him do since his last red-eye flight

2) There are moments when I'm much more of a basket-case about all of this (there's a feeling at times of having had the rug pulled out from underneath me) and he needs to lead me through deep-breathing exercises... luckily I'm good under pressure when it counts (serious medical meetings, getting it all scheduled, etc)!

Thanks for all the thoughts and prayers - we're gearing up for Round 3 on Monday....

Pumpkin Pie Cures Cancer

Good news from that oh so reliable news source, The Onion:

Sunday, January 4, 2009

Epiphany, Three Kings, Etc.

Hello everyone: we hope you made it through the holidays in one piece, deftly navigating the various obstacles thrown your way: blizzards? flight delays? fruit cake? family "togetherness?" I'm not saying any of you specifically experienced any of these things. I'm just saying, is all.

Aren't the holidays super?

Anyway, we're past all of that, heading inexorably to an Epiphany on Tuesday (a.k.a., Three Kings Day, Little Christmas, The Twelfth Night). My big epiphany is that the holiday break is over and it's back to the reality of running a nonprofit in the middle of the worst recession in 80 years come tomorrow. As my surgeon pointed out back in November, doing that may be more challenging than fighting cancer. I just finished reading the results of a Bridgespan survey of nonprofit leaders on how they're navigating the downturn. The news is the same all around: funding is down, demand for services is up, and all of us are trying to hold on to staff people who have sacrificed to get us where we are today. Something's got to give, and in the coming months, I think it certainly will for many organizations. How we navigate these moments by cutting smart rather than cutting in panic will tell the tale of our ability to have impact.

In the face of that, dealing with the effects of my "Maxi CHOP" treatments seems to be a passing annoyance. Seriously. OK, I will tell you that the aftermath of Round 2 was decidedly more difficult than Round 1. It's hard to say how much of that is due to the highly toxic ARA-C chemicals pumped intraveneously into my system over 48 hours and how much of it is due to getting just 3 or 4 hours sleep over the two days I was in the hospital. I suspect it was the latter, because even in good health, I'm a little past the time in my life when pulling back-to-back all-nighters was a good idea. At 45 and with a system already under duress, it took me like a week to get back to feeling normal.

After Round 1 with the R-CHOP, my white blood cell counts plunged to a dangerous low 7 or 8 days later only to come back to normal just before I started Round 2. This time, my WBC dropped but came back to normal by this week, thanks to my Neulasta shot. Unfortunately, my red blood cell counts dropped dramatically this week, which means that my blood cannot process oxygen well, so doing bike intervals with Coach Troy is much harder. I found my heart rate in the top of my zone during warm ups and had to ease back on some of the sprints. I got it done, but it's definitely a case of listening to my body. When it says no go, I don't go.

The more dramatic drop was in my platelets, which went from 271 on Dec. 26th to just 13 when I went in to the oncologists' a week later. A normal platelet count ranges from 150-400, and my lowest count before Friday was 174 (yes, I keep an excel spreadsheet on my phone with all of these stats which will surprise no one reading this I'm sure). If the count drops below 10, I will need a transfusion. As it is, I'm at risk of "spontaneous bleeding," which sounds lovely. It means that little blood dots may mysteriously appear inside my cheeks and my nose might bleed for no good reason. If anything bleeds and doesn't stop, I will have to go into the ER. Thankfully, that hasn't happened yet.

For any of you who are going to see me this week, please suspend our normal ritual greeting with swords. I am also giving up my chain saw for Lent a few weeks ahead of Ash Wednesday.

Lest you worry about me, let me assure you that my spirits are fine and I am continuing to do my best to live a boring life in a crazy world. My brother George and my boys spent the last week with me and we cooked pizza from scratch, made s'mores in the fireplace and had our annual Lord of the Rings film festival as we do every holiday season. Lucy and I went on a nice, four-mile walk this afternoon and I have been watching Alec Guinness pla
ying George Smiley on DVD all weekend. Kathleen is back from Florida to take good care of me. Other than looking like the bald bad guy in every James Bond movie, I'm ready and eager to get back in the saddle tomorrow.

Here's hoping that all of you are just as ready for whatever awaits us in 2009. As I suggested in the poem I wrote today over on that other blog of mine, it's far better that we look skyward right now. I'd rather not think about what we're collectively stepping in at the moment.