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.