Tuesday, August 24, 2010

Livestrong Philly Phollow-Up

Dear friends: Well, I'm back from an epic weekend in Philly, energized and not even a little bit sore.  Those 10 weeks of training paid off handsomely, particularly in the last 30 miles where so many riders fade.

The Livestrong Challenge absolutely lived up to the "Challenge" part with driving, torrential rains for long stretches of the race (during one of the downhills, I hit 45 mph and it felt like needles hitting my face), some of the toughest climbs I've done in some time (the one-mile,  7% grade climb up to the Landis Store mid-way through the ride was sadistic) and some of the scariest descents I've seen with twisty, poorly surfaced, rain-slicked roads claiming many riders (I saw more people crumpled by guardrails than I could have imagined).

But I made it through in one piece, one of just 70 riders out of about 1,000 starters to complete the full Century.  At mile 35, they started diverting riders to the 70 mile course after two and half hours had elapsed, but I had made it through in about 1:45, so I was able to stick to the plan and go the distance.  My lovely wife, Kathleen, played the happy "domestique" and photographer, meeting me at the Landis Store with three fresh water bottles and a vest for the rain.  Here is a slide show of her photographic talents:

But I was reminded in so many ways this weekend that this ride was not about my finishing time, about some Quixotic effort to prove that I wasn't 47 years old.  This was about the epic battle that so many families have been forced to wage, the harrowing confrontation with mortality, with terror, with life incomplete that 28 million people are living through right now.  I think of Marc Mandeville, the son of my father-in-law's long-time secretary, whose ongoing battle with colorectal cancer inspired over a hundred people to form something called "Team M-Power" and raise over $130,000 for this weekend's ride.  I think of the brother and sister who came from Rhode Island and Virginia to ride in memory of their mom, who passed away last year.  There were over three thousand of these stories riding on Sunday, and everyone would bring tears to your eyes.  Perhaps that's why it rained so damned hard.

On Sunday, I woke at 5:30 and started stretching and doing a pre-race meal.  I checked my iphone and saw a posting on the blog from a complete stranger named Christopher who made an out-of-the blue donation to Livestrong in my honor and wrote, your blog came up on mantle cell alerts tonight. i was declared in remission last week, on my 5th month of chemo. congrats on your ride tomorrow, your spirit, your health, your shaved legs! i've learned mcl is not the doom sentence i feared 2 years ago. look at us, both still going. i'm 55 and grateful. good luck on your ride. may the wind be at your back.  His words absolutely slayed me, bringing me to tears as I got ready to go out.  I thought of him several times as the course got harder and the weather got worse, telling myself, if you could get through 7 rounds of chemo, if Christopher could get through 5 with more to come, you can f'ing doing this!

I shared about 80 miles of the ride with a guy named Matt riding for "Team Mayo (he's a doctor at The Mayo Clinic) doing his first 100 mile race in about 30 years.  I introduced myself to him by saying that I was wearing a yellow jersey because I rode for his arch-rival, Team Mustard.  He stopped and waited for me when I cramped up at mile 34, and I pulled him through the last 30 miles as he fought off nasty muscle spasms in both legs.  That's what I'll take away from this ride.  Not my final time, which was slower than I'd hoped, but the friendships I formed, the stories I heard, and the sense that the point of this was for all of us to carry each other to the finish line.

Cancer is a heartbreaking disease, fought not just by patients but by doctors and nurses who can't help but be drawn into each patient's struggle, by spouses and siblings and parents who suffer watching their loved ones suffer.  I think Livestrong Philly reminded me of why this experience has defined me, in ways that I am particularly proud.  It forced me to reach out and ask for help, to admit my own weakness and fear, to be carried by those who loved me, to carry those around me when they needed it most.  

Thank you to all of you who made donations and who supported me in so many ways through both the very real struggle with mantle cell lymphoma and then the echo of that struggle in this ride.



PS: Here is a shot of the "Sharpie Tribute" I put on those shaved legs:

From Livestrong Philly

Friday, August 20, 2010

For Whom I'm Riding (or "Who I'm Riding For" if you don't speak English)

 Hi Everyone: First, I have to tell you how humbled I am by the incredibly generous support from friends, family, and colleagues for the Livestrong Challenge in Philly this Sunday. I started with a fundraising goal of $1,000 and blew through that in an hour.  I kept bumping up the goal and you guys just kept on giving.  As I write this, my fundraising total is at an incredible $4, 685.  Unbelievable.

 I've mapped the ride and I'm really looking forward to the 6% grade climb at mile 34 and the 7% grade climb at mile 62 (NOT!).  Thanks goodness I did the mountain training in Vermont back in July, or I think I might have had a nervous breakdown looking at this map.

Fun stuff to be sure.  Seriously, I know that this weekend is going to be quite moving for Kathleen and me.  We're going to a dinner for top fundraisers tomorrow night and will get to meet Lance Armstrong, an incredible honor given how his example inspired me and gave me hope in the darkest days of my cancer fight.

But the story I want to tell you now is about the people who will be on my mind as I suffer on those hills, people who have bravely confronted their own hills, suffered and spat in suffering's eye.  I shaved my legs this morning, partly because that's what we bike racers do (it makes changing the dressing on road rash much easier if you crash) but mostly because I intend to write the names of each of these people in a green sharpie on my legs on Sunday morning before I ride:

  • My friend and Bridgespan colleague Bob, who's daughter Nora has made all of us look like whimps as she confronts a nasty form of cancer and keeps her chin up every day.
  • Another Bridgespaner, Nan, who stood up to breast cancer.
  • Our friend, mentor, and fellow cyclist Carl, who discovered a rare form of cancer on his liver as the result of a biking accident and is now fighting like hell, the only way he knows.
  • My friend Deb, cancer-free and strong (and funny) as hell.
  • My Uncle John, a two-time cancer survivor.
  • My dear friend Bruce, who visited me for each of my hospital stays as he fought his own battle with prostate cancer.
  • My friend Randal, another prostate survivor.
  • Our friend Michale, yet another prostate survivor and frustrated stand-up comic.
  • My college friend, Kathy, who has courageously fought breast cancer and is now working day by day to regain her strength.
  • My mother-in-law, Maureen, survivor of two bouts with cancer.
  • Our friend Barb, who was such an amazing friend and supporter throughout my treatment, and who just learned that her dad has been diagnosed and who lost her mom to breast cancer at 54.
  • Kathleen's cousin, Bryan, who has been living with multiple myeloma for more than a decade through TWO bone marrow transplants.
  • My brother-in-law's dear friend, Mark, another myeloma survivor, with whom I biked the Boston marathon course this April.
  • My college friend Bill's sister, Kathy, who passed away several years ago but is still remembered every day by her brother and whose legacy is carried on in the work of the foundation that bears her name.
  • My friend Sarah's dear friend Cindy, who died of breast cancer at 34, leaving behind two young daughters, who are in college now.
  • Kathleen's cousin Diane, remembered by her brother Matthew,  who succumbed to lymphoma at 29.
My legs are bare tonight, but there will be green sharpie all over them on Sunday, not that I need that reminder to keep these brave and inspiring stories in my mind as I climb those steep hills.  Thank you one and all.


Thursday, July 22, 2010

Support my 100-mile Ride Against Cancer

Dear Friends: As many of you know, 20 months ago, I received what I thought at the time was devastating news: I had cancer, specifically, mantle cell lymphoma, one of the rarest forms of the disease, with only 3,000 cases worldwide and fairly grim survival rates. I wrote many of you an email with the news, aptly titled, "A Big Hill To Climb." Thanks to an innovative new treatment known as The Nordic Regime, an incredible medical team, a strong and loving wife, and all of you amazing friends, I am lucky enough to be writing you today about climbing a different kind of hill, the sort that I like to climb, because, as you know, I'm a masochist.

I'm now six weeks into a 10-week training regime for the Livestrong Challenge in Philadelphia, a
100-mile bike ride to raise funds to support people fighting cancer and their families. I've been cancer free since mid-way through my 6 rounds of chemo and bone marrow transplant. I don't use words like survivor, but don't think I don't thank my lucky stars every day that I wake up and think about getting on the bike to train instead of getting in the car to go to chemo or get another blood test or scan. I view this ride as a celebration of the blessings I've received, of my good health and good luck, and a giant thank you to LIVESTRONG, a.k.a., The Lance Armstrong Foundation, which was the source of vital encouragement, support, and inspiration to Kathleen and me throughout my treatment and the aftermath.

So on Sunday, August 22nd, I'll be getting on the bike at 7:30 and riding a Century, 100 miles through the hills around suburban Philly. I've been training six days a week since mid-June for this, and while I'm no longer the rider I was at 29 years old, when I rode a Century in under 4½ hours, I'm still holding my own for a soon-to-be-47 year-old. I rode nearly 60 miles over the mountains in Vermont this past Saturday, and while the climbing and the heat kicked my butt, I kicked it right back.

So, I'll do the training. I'd like to ask you to do one thing to help me out: Make a donation, of any amount, to support my ride. You can give $5 or $50 or any amount that suits you, but please let me know that you're right there with me as I climb 4,337 feet of hills that are still nothing compared to the hills I had to climb 20 months ago. Making a contribution is easy. You can go to my Livestrong Web Page and donate directly there, or if you're friends with me on Facebook, you can go to my user profile and click on the Livestrong tool that's on the left side of my page.

Thank you for all that you've done already to support me getting this far. Anything you can give will help others like me and will help me make the most of the incredible gift that a second chance at life represents.



Tuesday, April 20, 2010

Happy Anniversary

Hi everyone.  I know, it's been many moons since my last confession.  And of course, that's the point.

Today marks the one year anniversary of my bone marrow stem cell transplant at Mass. General.  This time last year, I was trying to get to sleep with the aid of some Atavan while listening to Josh Ritter on mp3 player.  Today, I may drink a little Bailey's to get to sleep while listening to Josh Ritter on mp3 player.  Potato.  Potahto.

First, for those of you who haven't seen me regularly, my health is terrific.  I just put my last post-transplant meds into the empty Livestrong shoe box I keep in my closet today.  

At my last doctor's appointment in early March, my oncologist said that he would never know that I had cancer from looking at my blood work or examining me.  I'm biking 400-500 miles a month again, and my power on the bike is back to what it was before diagnosis.

If you think that I'm not knocking on wood with one hand while typing with the other, you don't know me.  As I noted when I last wrote here back in May of last year, this experience has made me profoundly aware of one enduring lesson: Life is temporary.  There are no guarantees that the lymphoma won't come back or that it won't send along some unwelcome cousin.  There are no guarantees about so much in life, however, that I can no more dwell on this than I can on the fragility of employment and financial solvency for so many of my friends or the endless litany of risks that adolescence presents for my two boys.

To be honest, the past twelve months of "survivorship," as they call it in the Cancer business, have been far more challenging than the six months of treatment that preceded them.  Having just watched the first 8 episodes of the HBO miniseries, "The Pacific," I can't help but once again analogize my experience to war.  Treatment was World War II, with a clearly defined enemy and a lot of brave allies in the foxhole with me.  Survivorship is like the post-war period: messy and mistake-prone, with moments of joy and plenty of regrets.  In other words, survivorship is life, with all that that entails.

Yesterday, I had the good fortune of spending the day cheering on my brother-in-law, Phil, as he once again ran the Boston Marathon.  Last year, he ran it on the day of my transplant and dedicated his run to me and to his good friend, Mark, who is fighting Multiple Myeloma.  

Yesterday, Mark, who is 7 months out from his bone marrow transplant, his son, Connor, and I biked the length of the course, looking for places to catch a glimpse of Phil.  We never did find him, but I have to say that for me, and I imagine for Mark as well, that wasn't the point.  We covered 39 miles on our bikes, me on my expensive carbon racing bike and Mark on his heavy rental.  Neither of us was wheezing because our red cell counts were low.  No one had to worry about falling off the bike with a low platelet count.

These victories weren't conscious, but I felt them in my bones all day long.  I was alive and climbing the hills by Hellenic College as I angled back to Kenmore Square in a way that was unthinkable 365 days ago.

There are so many people to thank for being where I am today.  I have to start with my amazing wife, Kathleen, who has endured so much with me in two and half years of marriage.  I can't believe we haven't been married 15 years for all that we've endured, but believe me, I love her like the day I met her.

I also want to once again thank my amazing nurses at Mass. General, Liz and Laura, who still stay in touch on Facebook, and my team at Newton-Wellesley's cancer center--especially Katie, Beth, and Dr. Wisch.  As so much nonsense swirled through the public discourse about healthcare this year, all I could think about were these amazing people who came into my life and helped me heal and in so doing, changed me for the better.  How lucky was I to live in Boston and have an employer subsidized Blue Cross PPO plan?  How many people out there did not have the choices that I was so lucky to have?

And finally, I want to thank all of you for reading and for cheering me on.  Believe me, I have felt your love and support profoundly, and I hope I have passed that good spirit on to my fellow cancer fighters who need some good vibes.  If I can work out the logistics of summer camp pickups, I will be spending the first weekend of August riding the Pan Mass Challenge, a 185 mile bike ride to raise money for cancer research.  I see it both as a celebration of my journey back and as a thank you to all who suffered and sacrificed so that a treatment for Mantle Cell Lymphoma could be found.  Stay tuned for ways to help cheer me on in this next endeavor (and yes, have your credit cards ready!).

I'll leave you with this amazing song from Regina Spektor, "Laughing With God, which was the theme song of the past year and half.