Pan Mass Challenge Recap

Dear friends, donors, countrymen: I more than survived the Pan Mass Challenge this weekend, and I'm already looking forward to doing it again next year.  The experience brought together so many strands.  Let's start with the notion of community and common purpose in our incredibly divided country, personified by Senators John Kerry and Scott Brown flanking Lance Armstrong on the starting line:

As I've written before, cancer, for all of its evils and heartaches, creates this sort of community.  I'll remember the crowds who lined the roads, ringing cowbells, yelling thank you to me hundreds of times, putting up photos of loved ones who are fighting cancer and photos of remembrance for those who were left behind.  Here are a few images caught by my friend Lauren Hefferon, with whom I had the pleasure of sharing the road for the first 10 miles or so on Sunday:

For those of you not following my exploits on Facebook, my day started at 3:45 Saturday morning.  Kath and I woke up, although in my case, I really didn't sleep at all because I was so wired.  We were in the car and on the road to Sturbridge by 4:15.  I drank a bottle of liquid yogurt to load up on carbs and protein in an easily digestible form, and we arrived in the parking lot of the Super 8 in Sturbridge at 5:00.  I quickly put on sunscreen, loaded up my bike with four 24-ounce bottles of HEED, filled my pockets with food and spare headsweats.  By 5:25, I was on the road, hopping onto the back of the lead pack as they swept past the hotel entrance onto Rt. 20 and the hills of central Mass.





The first 10 miles did feature a few climbs, but honestly, they weren't nearly as tough as they were made out to be, and the way the course worked, we were doing far more descending than ascending.  My only concern was hitting speeds in excess of 45 mph on some of the downhills with other riders just a foot off of either wheel.  I love going fast down the hills, but I prefer to do it without company.  At any rate, by the time we hit the first rest stop, about 22 miles into the ride, I was averaging a stunning 20 mph, about 2 mph faster than my goal for the day.  My main fear was that I'd burn all of my candles going out too fast and have nothing for the last stretch.  I settled down into a nice rhythm for the next 45 miles or so, riding in pacelines with 15 or 20 other riders so that we could draft off of each other and take turns pulling up front.  Even riding what I thought was a more conservative pace, I was still topping 19 mph when we pulled into the rest area at Dighton-Rehoboth H.S. at about mile 75.


The last 35 miles were ridden mostly on adrenaline, fueled by the free Del's Lemonade handed out at the Dighton-Rehoboth rest stop, and a determination to just be done with the ride.  I got in with a great group of riders, and we pulled each other nearly to the end.  A few got dropped as we hit brutal headwinds the last 5 miles into Bourne, where a steady southwest wind of over 20 knots hit us.  By 1:15, I was happily greeting Kathleen and Lucy, who were waiting at the finish line.  Final time 5:40:37 over 108.5 miles for an average speed of 19 mph.  

I could get used to courses that start at 1,000 feet and finish at sea level.  A quick, ill-advised hamburger and sip of beer, and I was on my way to my inlaws in Falmouth for a wonderful dinner with friends and a much better night's sleep than Friday night.


It rained cats and dogs Saturday night, and I felt badly for my fellow riders sleeping in tents at Mass Maritime.  I heard that the sound of wind howling over the campus kept most of the folks up all night,except perhaps those who had overindulged in the free Harpoon Beer.  Being the Boy Scout that I am, I was prepared for the change in weather and switched to my rain bike, which is slightly heavier, but not nearly as valuable, for Sunday's ride, so I didn't worry about trashing the drive train.  I attached a lightweight fender to the seatpost to keep water off of my butt for the ride, put neoprene "booties" over my cycling shoes, a gortex cover on my helmet, and a neon yellow cycling jacket, and I was ready to go.




I met the riders coming off the MMA campus at the Bourne rotary, and we followed a course up the Cape Cod Canal before cutting east, up the Cape Cod Bay side of the Cape, from Sandwich to Barnstable, Dennis, Yarmouth, Brewster and so forth.  Miraculously, the rain cut out almost immediately after we hit the canal, and I rolled up my jacket and helmet cover and stuffed them into my shirt pockets.  The roads were slick, and I was happy for the fender on my back wheel and not to be obsessing about ruining my good bike.  Unfortunately, there were a lot of crashes on the road, mostly behind me among the less experienced riders.  Here's a laconic medical report from PMC Founder Billy Starr in an email today:


Medical Report: Weekend hospital visits: 21

Saturday: 9 riders plus 2 volunteers - all released on Saturday

.               7 bike collisions

.               1 heart evaluation

.               1 dehydration

Sunday 10 riders

.               1 transfer to Boston for hip fracture

.               7 bike falls - all released

.               2 concussions - both released

I was very happy to see Kathleen and Lucy (our dog) waiting for me with friends Geraldine and Christophe from France at mile 32 in Brewster.  It's great to see friends waiting for you at the finish, but seeing them along the route is even better.

Our French friends were very moved by the experience, and Christophe is making noises about coming back from France next year to ride with me.  Allez!

Their son (and Kathleen's godson), Auguste, got to be part of a fabulous group of spectators at Cape Cod Sea Camps who form a cheering section known to the riders as "The Hedge," about 250 kids screaming and holding placards along a hedgerow on the side of Rt. 6A in Brewster.  Wonderful stuff.

So we had a powerful tailwind when we turned the corner at the elbow of the Cape around Nickerson State Park and flew up to Provincetown with nary a sidelong glance at the ocean views in Wellfleet.  Once again, the headwinds came up with a vengeance for the last five miles and we limped into Provincetown a bit the worse for wear.  Final stats for day two: 73.63 miles in 3:59:31 for an average speed of 18.4 mph--not too shabby for a second long-distance day in the weather conditions we encountered.  By 10:15, I was done and eating some Legal Seafoods chowder while I waited for poor Kathleen to find some parking anywhere in Provincetown.  Luckily, she was driving my car, which as many of you know, is blessed with "Parking Karma," and she found a metered spot right in the middle of town.  

Lance Armstrong wrote about his cancer experience that "It's Not About The Bike," and that is mostly true.  My big memories of this weekend will be the incredible support, the moving images of people touched by this disease like the father who rode all 192 miles on a tandem with an empty backseat in memory of his son, and the sense of community and camaraderie that these events create.  We could use a lot more of that in our world today.

But for me personally, it IS about the bike too.  Two and half years ago, I was in an isolation ward on the 14th floor of the Ellison Building at Mass General riding an in-room exercise bike and winded by the slightest exertion.  To be able to meet the challenge of the Pan Mass, and if I do say so myself, KICK ITS BUTT, is a testimony to what all this research is for--so that cancer doesn't have to be a terminal diagnosis, but a challenge to face and overcome so that we can turn our attention back to the challenges of living rather than the challenges of dying.

Thank you one and all for your generosity of spirit and of purse.  Your support was felt every mile and every turn of the pedals.  Together we raised over $5,000 for cancer research.  You each were part of the victory of finishing in Provincetown.

Love,

Steve

Coverage of my 15 minutes of Fame at PMC Night at Fenway

By Krista Kano


Fenway Park- With a ukulele version of “Somewhere over the Rainbow” playing over the loudspeakers, Stephen Pratt of Dover and 31 other cancer survivors rode their bikes from centerfield around Fenway Park’s warning track prior to Saturday’s baseball game between the Red Sox and Milwaukee Brewers. They were greeted by a standing ovation from a crowd already excited from the Boston Bruins’ Stanley Cup parade earlier in the day. 

The riders made their way to home plate and stood next to their bikes while fellow rider and cancer survivor Denise DeSimone sang the national anthem.

Saturday was Pan Massachusetts Challenge Day at Fenway Park.

In October 2008, Pratt was diagnosed with mantel cell lymphoma, a cancer of the B-cells that make antibodies. Of the 48 different kinds of lymphoma, mantel cell is the second rarest form, with only 3,000 cases known in the world.

Pratt ran cross country during college. After postgraduation knee problems, he borrowed a friend’s old bike and within a year was a licensed United States Cycling Federation Rider. Pratt continued to ride competitively into his early 30s and always stayed healthy. He didn’t seem to fit the bill for a cancer that typically attacks people between the ages of 70-79.

Even with the diagnosis, there was hope. 

“Cutting-edge research saved my life,” said Pratt. “This kind of cancer was considered universally fatal until literally two weeks before my diagnosis.”

Pratt followed the Nordic Regimen, consisting of seven rounds of high-dose chemotherapy and an autologous bone marrow transplant, a system in which stem cells are taken from the patient before high doses of chemotherapy and are replanted after treatment. 

During treatment, Pratt trained for his first PMC race.

Today, Pratt has been in remission for 27 months and counting. He is currently training for his third PMC race. 

The Fenway PMC Day marks the Red Sox’ ninth year as a presenting sponsor of the PMC, an organization that since its founding in 1980 has raised $303 million. This year’s cyclists, age 13-87 hailing from 34 states and six different countries, will chose from 11 different routes ranging from 25 to 192 miles. As the most lucrative single fundraising event in the country, the PMC this year hopes to raise $34 million. 

Pratt hopes to contribute $5,000 to the cause. He is training six days a week for 10 weeks, riding between 140 and 210 miles per week at an average rate of 19 miles per hour to prepare for his 192-mile ride from Sturbridge to Provincetown. The night before the challenge, he’ll load up on carbohydrates and water and will stay away from caffeine and alcohol. 

“The best way I can describe it is like a fuel line on a car. You can fill up the gas tank, but you have to keep the fuel line going. If you wait to eat until you’re thirsty or hungry, you’re already dead,” said the experienced rider who has also participated in Livestrong rides. 

But for Pratt, it’s not about the bike.

“There are a million things I could do to prove I’m a great cyclist. That’s not what this is about,” he said.

To contribute to Pratt’s ride, visit www.pmc.org/profile/SP0190.

Copyright 2011 Dover-Sherborn Press. Some rights reserved

Read more: Dover resident takes cancer fight into high gear at Fenway Park - Dover, MA - Dover-Sherborn Press http://www.wickedlocal.com/dover/archive/x1425881687/Dover-resident-takes-cancer-fight-into-high-gear-at-Fenway-Park#ixzz1Q2MfizW9

Support My Ride Against Cancer: The 192-mile Pan Mass Challenge!

Dear Friends: As many of you know, 30 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.  I’ve been cancer free since mid-way through my seven 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.

Many of you were kind enough to sponsor me as I trained and rode in the 100-mile Livestrong Challenge in Philadelphia last August.  With your help, I raised nearly $5,000 to fund Livestrong’s efforts to support the 28 million people affected by cancer.  This year, I’ve decided to kick it up a notch, and will tackle the legendary Pan Mass Challenge, a 192-mile, two-day bike ride from Sturbridge to Provincetown.  Day one takes me 111 miles from Sturbridge to Bourne; Day Two should be a relatively flat 79 miles from Bourne to P’Town.

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 the doctors, the hospitals, the researchers, and especially the NURSES, who were the source of vital encouragement, support, and inspiration to Kathleen and me throughout my treatment and the aftermath.  100 percent of funds raised by the ride go to the Dana Farber Cancer Institute, one of the leading research institutions in the world.  I wouldn’t be alive today if it weren’t for cutting edge research and many people who gave their lives in research trials so that an effective treatement could be found.

So on August 6^th, I’ll be getting up at the crack of dawn to drive west to Sturbridge so that I can pedal East to the Cape.  I’ll sleep at my in-laws (thanks Mo & Fou!) in Falmouth and drive over to Bourne on the 7^th, so that I can torture myself all over again by riding to from Bourne to the tip of the Cape.  As most of you know, I ride year-round, but I’ll start training in earnest on Memorial Day, covering 100-200 miles a week over 10 weeks to get ready.

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 2,500 feet of hills that are still nothing compared to the hills I had to climb 30 months ago.

Making a contribution is easy.  You can go to my PMC Web Page and donate directly there.  If you prefer to write a check or if you have matching gifts available through your employer, you can make a check out to “Pan Mass Challenge” with “Stephen Pratt 72947-5” in the memo, and mail it to me at 42 Glen St., Dover, MA 02030.

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.

Best,

Steve

PS: Apologies if you get this more than once due to cross-posting…

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.


Love,


Steve


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

From Livestrong Philly

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.

Steve

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.


Best,


Steve

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.



Love,


Steve

Lucky

Hi everyone: I owe you a long posting after a long silence. And that's part of the problem, I've been putting off this post for so long because (a) there's so much to say and I don't quite know where to start and (b) I have an almost superstitious aversion to celebrating too much for fear of jinxing it.

I went in for my weekly oil change and tire rotation with Dr. Spitzer and the pit crew at MGH's Bone Marrow Transplant center today. My white blood cell count has continued it's steady climb from 3.7 at the beginning of the month to 5.6 today, well out of the neutropenic zone that I was in coming out of transplant. All food restrictions were lifted last week, and I'm down to just three pills a day now, not the 10 to 15 that were part of my routine over the last few months. Today, I was given the green light to return to work on Monday.

I'm coming back ONE MONTH ahead of schedule. When I told Dr. Spitzer that I'd biked 105 miles and run 8 in the past week, he shook his head and said, "That's just unprecedented."

I know and appreciate how lucky I've been through all of this, particularly this last stretch since going into MGH to have my stem cells harvested at the end of March. At every turn, I've exceeded the doctors' expectations. Blame it on me being ultra-competitive, credit it to me being in good shape going into this, or, my preference, recognize that this is a cruel and capricious disease that I've been fighting, and I have been damned lucky to get the better of it.

Wayman Tisdale was not so lucky. The former college and Olympic basketball great died of bone cancer two weeks ago at 44, with a great attitude and in great shape. I opened my alma mater's alumni magazine last week to discover that a member of this year's senior class was not so lucky, dying just three weeks after being diagnosed with leukemia. Kat Eckman was an extraordinary young woman who gave the world a life's worth of blessings in 21 years.

I know it won't surprise you that I read Lance Armstrong's It's Not About The Bike cover-to-cover in about two days back when it came out. It may surprise you that from diagnosis until tonight, I've been unable to take that book down and crack it open. Nor could I read any of the other cancer books out there or wade onto the cancer blogs and read the stories of other fighters like me. Partially, it was just too painful to read other people's accounts, because somehow they made me admit how terrifying all of this was. If I only wrote and read my own story, it could be anything I decided it would be, and you know, I decided it was mostly going to be funny.

But I did pull down Lance's book tonight, because there was a quote in there that stuck with me as I heard people tell me that I got through this because of my attitude and my strength and my fitness:

Good, strong people get cancer, and they do all the right things to beat it, and they still die. That is the essential truth you learn. People die. And after you learn it, all other matters seem irrelevant. They just seem small.

Armstrong went on to write:

I don't know why I'm still alive. I can only guess. I have a tough constitution, and my profession taught me how to compete against long odds and obstacles. I like to train hard and I like to race hard. That helped. It was a good start, but it certainly wasn't the determining factor. I can't help feeling that my survival was more a matter of blind luck.

I'm glad I had a good attitude and that I made the people around me laugh with me. And I'm glad that I willed myself to get on the bike even on days when I felt like crap and could only spin at low resistance while I watched Sport Center. Did it help me get to the other side in such great shape? Like Lance, I doubt it. But what I do know is that the attitude let me get through this more on my terms than on cancer's terms, and that made all the difference.

I'm by no means out of the woods with this, and I will never use words like survivor or cure. One doesn't survive life; one lives it, and cancer is part of my life now. I have to say that returning to life after battling death is an entirely new sort of challenge. I have some sense of what it must feel like for soldiers returning to peacetime society after war. Perhaps there will be something worth saying about all of that. We'll see how much more blogging I have in me over the next few months. In the meantime, there's a lawn to be mowed, a nonprofit organization to be led, and a few new bike routes to try out.

Dear all, It's so nice to have Steve home! We got back to the house around 9:30 pm on Thursday night, after Steve gave a great speech to 250+ people at the Youth Advocacy Project gala, via webcam (It's a little scary that I was responsible for the technology set up; am proud to say that it worked!)

Wanted to share a photo of that evening, below, and one from today, right - in true Steve form, he biked 16 miles in the basement, and I took a nap.

Given the outfits, I think I'm going to propose to the Lance Armstrong Foundation that they take him on as a model for their apparel.

We saw Dr. Spitzer today, who was very pleased with both Steve's mental and physical state. He mentioned that the folks on Ellison 14 really miss him, that they've rarely had so many laughs with a transplant patient.

His counts are inching up, the precautions are still quite stringent, but after IVs and isolation, hand-washing and clorox seem like a really easy deal...

Big hugs to all, and thank you for the prayers and thoughts - it is our hope and prayer that you all enjoy health, and that we can start socializing soon... we've decided that "boring and middle aged" is a fine goal!

Kathleen

Top 10 Good Things About BMT Isolation

Hi again everyone. Can't tell you what day of splendid isolation we're in because I refuse to count them off right now. I'll do that when I get out. For right now, I'm living in the moment, structuring each day around reading good books, replying to all of your lovely emails, watching some shows on Hulu.com and riding the in-room exercise bike while looking out at the Longfellow Bridge and beyond..

Since our Top 10 Isolation Movies was such a hit (I'll announce the winner soon), I thought I'd offer a companion to the Top 10 Good Things About Chemo that I posted back in December. To wit, the top 10 good things about isolation for bone marrow transplants.

From the Home Office in Boston's West End:

10. My own version of the Slimfast diet: an egg for breakfast, a strawberry shake for lunch and a cappuccino shake for dinner.

9. Ability to provide friends with live, up-to-the minute traffic updates for the Red Line, Storrow Drive, Memorial Drive and the upper deck of I-93.

8. Discovering that I can spend hours imagining the potential medical purpose of devices attached to the ceiling.









7. The thrill of deciding each morning which pair of Adidas track pants to wear—white, blue, black, blue/orange—and select a shirt that truly does them justice.

6. Opportunity to improve my soccer coaching skills by critiquing 8v8 and 6v6 games taking place 14 stories below. Bottom line: Roddy's team could crush any of them.

5. Morning Skype video calls with my brother remind me just how much worse I would look if I were covered in hair.







4. Shifting nurse assignments allow me to rework same tired material and get laughs anew, from people who are paid to humor me.

3. Safety precautions for visitors mean that I can imagine what it would be like to live in a place that required veils on men and women.







2. Charting daily fluid intake and urine output opens up a whole new world of opportunity for the obsessive compulsive in me.

1. Major Life Lesson: Duckboats are the only recession-proof business in Boston.

TOP TEN MOVIES ABOUT ISOLATION

Dear friends,

It wasn't such a fun weekend for Steve on Ellison 14... he literally has "ZERO" white cells and neutrophils (thus, NO protection from any infection). He's not hungry, and he has alot of discomfort in his mouth/throat from the chemo fallout. As always, he is amazingly focused and looking on the bright side.

So, on a fun note, we thought we'd launch a competition... We're compiling a very important list, of the TOP TEN MOVIES ABOUT ISOLATION. We need your movie ideas, and to get things kicked off, here are a few we brainstormed yesterday, via Skype, with Steve's brother George and our sister in-law Sydney:

"Inside Man"

"Waiting for Godot"

"Count of Monte Cristo"

"Castaway"

Place your votes! We want to hear from you! The wittiest and funnest movie ideas will be celebrated in a special way, so don't hold back!

Hugs
Kath

Our "Community"

Some people today are a wee bit complacent until something jumps up and bites them.
—a Roanoke city councilor quoted in Bowling Alone.

As I sit up here on the 14th floor in my splendid isolation, I've had a fair amount of time to contemplate the nature of human connections and community, the emphemeral and the permanent, the accidental and the designed.

I'm certainly not the first to cover this ground. Robert Putnam's seminal Bowling Alone used the demise of bridge clubs and bowling leagues as a metaphor for the unraveling of community connections as Americans' sense of place succumbed to suburbanization and migration. Putnam's work spawned a coterie of academics and activists devoted to experiments in rebuilding "social capital" in communities.

While I certainly saw something noble in the idea of reforming community glue groups like Elks Clubs and Garden Societies, there always seemed something archaic and quixotic about this approach. We live our lives now in cities and towns we hardly recognize, even if we grew up in them. Ad hoc communities are formed at offices, youth soccer sidelines, and "networking" events. People pass into our lives and touch us or we touch them, but rarely are those bonds more than fleeting. We will update each other with Christmas cards, "friend" one another on Facebook, and if you're as good a person as my wife is, you will call regularly.

Here in Boston, The Barr Foundation funded several ambitious efforts to map out these informal social networks and learn how they formed, reformed and sustained themselves. I won't try to summarize all that was learned in these efforts and what it tells us about how adaptive, organic networks might change the way we live. As Barr was studying all of this, we saw the emergence of forces that will, shortly, bring us back to the subject at hand (I promise).

Howard Dean is unfortunately remembered for one ill-advised scream and less for a radically new organizing model that was adapted by Deval Patrick in his race for governor here in Massachusetts and then perfected by Barack Obama. Most political races are about politicians much more than ideas, and the press does little to upset this maxim. Dean and his advisors used the Internet to mobilize and connect a group of people with a vaguely shared idea (that the Iraq war had to end). Once connected, this activist network took on a life of its own.

That said, these networks are not easily manipulated, the way Tammany Hall might have moved its network. I remember after he pulled out, Dean saying that he would put his network at Kerry's disposal in the general election. We know how that turned out. The network had formed to oppose a war, not elect a politician, and enough people in that network distrusted Kerry's sincerity to make it a neutral factor, as much as they despised Bush.

During the campaign for governor here and the presidential election, much was made of the movement that had been created, the number of people who had been moved to act, to give of their time and money, to build a better state or country. After the elections, earnest commissions were formed to discuss how to mobilize this ad hoc community once again in the act of building something better.

Here in Massachusetts, little evidence of the 50,000-strong network Deval Patrick built remains, nor do I see a grassroots network backing Obama more than tacitly. It's obviously easier to rise up to do battle than it is to rise up and do something that truly changes anything.

In my trademark meandering way, this all takes me back to this blog and the community we've built. I've been moved in myriad forms by the connections I've been able to make through this to people I sort of knew, people who sort of knew me, and people who didn't really know me at all before this all started. I got an email late last night from one of these friends, expressing how my latest poem had touched him. Someone else emailed me today with ponderings on the pursuit of self-knowledge. And a sister of a friend emailed me from Louisville a few days ago to thank me for the "In Treatment" recommendation.

As I awoke this morning, I thought about what an unexpected gift it has been to reveal myself to others and in the process, have so many others reveal themselves to me. I've certainly questioned my own motives at times, but the reality is that it has been so much easier to walk through this with all of you than it would have been alone.

What I wonder now is to what purpose we turn this? I do not mean forming a club or a movement or even a Facebook group. Some of you are becoming first-time platelet donors in my honor. Others may have a different conversation with their partner than they've had in some time because of what this journey suggests about our shared mortality. What I do know is that none of us will be the same for the connections we're forging with each other, and I have to believe that some higher purpose may well be served if we dare hold on to those connections through the static that will surely return to my life as it does yours.

Phil, Bill, Steve and DAY ZERO

Dear all,

Steve received his stem cell "rescue" today... it was fairly eventful and tiring, given the cocktail of drugs, and he is trying to rest (easier said than done in a hospital). Unfortunately, nothing tastes good right now food-wise, so he is drinking elemental mixtures to at least get some calories into his system. Let's hope he can sleep better tonight, although we are realistic about his counts continuing to crash during the week, given the chemo dose from last week. The idea is for his reinserted stem cells to "criss cross" with his old immune system. We're keepin' positive...

Speaking of positive, I couldn't help but have tears in my eyes watching the Marathon today... my voice is gone from cheering the racers! As I looked out at the sea of runners, all I could think of is that there are 30,000 stories that brought all those amazing people to that race. And I loved that they were running and producing all those endorphins just as Steve was receiving his transplant. My brother Phil finished the Boston Marathon in 3'59" in exactly the amount of time it took Bill Rodgers to run! (I had seen Bill on Boylston St on Saturday when I went to pick up Phil's bib for him)

We even saw Phil in the crowd and got a hug as he passed by... Lucas had the poster of the day which read, "Phil Yaz iz the man!"

Kath