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…

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.

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.

In Treatment

"I'm not a TV person," we've heard some people claim, and we probably envy them to some degree, the way we do those who forgo alcohol or ice cream or avocados. I, on the other hand, am a TV person. Not so much "American Idol" or "Are You Smarter Than A 5th Grader," but I do find myself absorbed by shows that work more like long-form novels, usually dark ones at that. So, I'll have to ask you to trust me when I tell you that shows like Battlestar Galactica, Rescue Me, MI-5, and The Sarah Connor Chronicles tell stories about the human condition today that are as compelling as anything found in Dostoyevsky or Faulkner. Not a substitute for them, but voices that add something to that exploration. Like I said, you'll just have to take my word for it.

As in good novels, I find myself becoming attached to the well-drawn characters in these series, even if on the surface, their life circumstances bear little resemblance to my own. Indeed, it may be precisely because their circumstances are so different (an alcoholic firefighter dealing with post-traumatic stress or a mother defending her son from killer robots) that they allow us to look at the darker sides of life more readily.

Stay with me, people. I promise I'll bring all of this back home to the subject at hand presently. This week, the second season of HBO's In Treatment got under way, starring the remarkable Gabriel Byrne as Paul, a shrink with as many demons as his patients. The show features five half-hour episodes per week, each episode with a different patient. We watch the patients go through therapy in 12-week story arcs that are equally compelling and painful.

While some of the patients bear little resemblance to me, the new season introduced a patient named April, 23 years old, who is trying to come to terms with a diagnosis of lymphoma. She's gone five weeks without telling a soul and is toying with the question of whether to stand up to the disease or let it take her. A little close to home?

She tells the doctor, "Don't ever get a bone marrow biopsy. There's got to be some other way." Yeah, I can absolutely relate to that one. More on that subject in a moment.

Later, he observes, "You seem to me to be really independent, and I can imagine that the idea of accepting treatment, putting yourself in someone else's hands can be really scary."

Paul: "There's an old saying that smokers don't believe that cigarettes will give them cancer because cigarettes have never given them cancer before...I'm wondering if you really believe that you have cancer."

April: "I know I have cancer."

Paul: "Yes, but do you believe what you know?"

I would have found this compelling viewing any day, but for a number of reasons, I've found my mind wandering back to those difficult early days in October and November when this news first broke and began to settle in. I got a brochure in the mail today from the Massachusetts Nonprofit Network, an organization that I helped launch over the past five years and a couple of pages in, I discovered a photo of me (with hair) taken at our statewide conference this past October 24th. That day marked the culmination of years of hard and dogged work by many people to give the nonprofit sector a voice in the dialogue about the future of our state. The hope was (and is) that the values that have made the nonprofit sector distinctive could begin to shape the values of our politics and our state at large. October 24th was one of those rare days in my life where years of tending a garden suddenly bore real fruit.

Toward the end of the conference, my cell phone buzzed and my GP was on the line. I'd had the first CAT scan of my neck the day before and wasn't thinking much of it because my blood work had already come back clean and I was looking at the CAT scan as a formality. So, you can imagine the sinking feeling as I listened to my doctor talk about an abnormal result and the need for a biopsy as soon as possible. Believe me, I went through every emotional phase you could name over the next four or five weeks. There were moments where, like April, I couldn't believe what I knew and I doubted my own capacity to stand up to this disease.

At the risk of sounding maudlin, I'll tell you that three things convinced me that I could do this: the amazing love and support of Kathleen through all of this, my own determination to be there for my boys no matter what, and the sense that beyond anything else, I would never want to be remembered as a man who shirked a fight worth fighting. If I were going to go down, I wanted to be remembered for going down fighting. Fear not, I have no intention of going down anytime soon.

As we approach the end of the fighting phase of this journey, there has been little time for coasting. The week before last, I had to be transfused twice with platelets and then admitted to the hospital for the weekend and transfused with whole red blood because my hematocrit had dropped so low. It was as lousy a week as I've had in this entire battle.

A week ago--the day after I was released from the hospital--I was at Mass General to have my marrow stem cells harvested. The tide really turned in my favor that day. They were looking for a minimum count of 5 cells per million to do the harvest. I had 443, which they told me was the highest they'd ever seen at MGH. That meant that instead of taking three days to harvest enough cells for my transplant, they got enough in four hours.

I felt increasingly better as the week wore on, and I even got through a second bone marrow biopsy on Friday with minimal drama, thanks to the wonders of morphine (Charlie Parker, eat your heart out!). A day after the biopsy and seven days after being admitted to the ER with a 100.6 degree temperature, I was on my bike, covering 19 miles on a beautiful early spring day.

I've learned so much in this fight that it will take a dozen blog entries or perhaps a book to capture and express it all. But one lesson stands out more than most. Good times and bad times are all temporary. I cherish the good days, and I will keep yesterday's bike ride in mind as I slog through three weeks on the transplant ward. And I will not hold onto the dark days, because they slide away as quickly as we are willing to let go of them.

There Will Be Blood

Hello everyone: I'm writing this from home after Day 1 of the 6th and final round of chemo this week. I got the Rituxan (MIghty Mouse) today, which is not that big a deal, particularly because the mild allergic reactions that I experienced in the first couple of rounds are no longer an issue. So all I had to do was show up at 9:30, get a blood test and get an IV hooked up to my mediport by about 10:30. The benedryl put me right to sleep and I dozed until noon. I caught up on email and watched a little bit of TV on Hulu until it was time to go at 2:30. No big whoop. I did bring in a platter of dolmas and hummus for the nurses at NEHO today because it's one of my last days in the common chemo room and I wanted to do something special to thank this extraordinary group of women who balance professionalism and compassion on the head of a pin every day.

Tomorrow, I head over to Newton-Wellesley Hospital at 7:00 a.m. for the last round of the ARA-C. Again, the actual administration of the chemo drugs is not terribly dramatic or traumatic, other than the two doses that I get in the middle of the night. The week after is usually tougher than the actual hospital stay because I'm sleep deprived and my blood counts drop to scary-low levels. I'll be willing to bet that I get another blood transfusion by then end of next week.

Which reminds me that I have come up with a tagline for my friends at New England Hematology & Oncology (NEHO). I've convinced my friends at the reception desk to start answering the phone, "Hello NEHO. There WILL Be Blood!"

I think if they can get Daniel Day Lewis as their celebrity spokesperson, they'll really have something going.

Of course, cancer is a recession-proof business anyway, so I guess they don't need my marketing genius to get by. Nevertheless, I will continue to offer unsolicited advice to them...

So in a couple of days, I will be through this phase of my treatment and moving on to a new adventure. As most of you know, I’m going to be going out on leave next month to get a bone marrow transplant. Here’s an update on where we stand. Kathleen and I went to MGH lastTuesday to meet with the bone marrow transplant team and learn details of the plan for my autologous stem cell marrow transplant, which is not truly a transplant but an extraction and reinsertion of my own marrow stem cells. They do this by taking large quantities of blood out of me through an IV, running it through a machine that separates out the marrow stem cells floating in my blood, and then reinserting the stem cells several weeks later. Here are the details:

• Starting this Friday, I’ll go over to NEHO every morning at 8:45 (including Saturday and Sunday) to get a Neupogen shot, which will stimulate the production of marrow stem cells into my blood stream.
• On March 30 & 31, I will go to MGH first thing in the morning and have the blood drawn out. They’ll take like 4 pints out a day and cycle it back in, and this will take up to 5 hours. If they don’t get enough stem cells, I’ll have to keep coming back on subsequent days to give more blood.
• On Monday, April 13^th, I’ll be admitted to MGH’s bone marrow transplant unit, which is located on the top floor of the hospital with a nice view of the Charles River. Since I’ll practically be a prisoner for three weeks, it’ll be good to have a decent view!
• The first step will be to give me one final mega-blast of chemo over the first 4 days. I’ll be getting 10 times the dose that I received in any other round of chemo, and this will basically destroy my entire immune system, along with killing any remaining stray cancer cells floating in my system. My white cells, red cells and platelets will all go through the floor and I will be in a very weakened and vulnerable state. The chief concern will be to avoid infection, so I will be in an isolation room and unable to see visitors.
• Once I’m stabilized after this last chemo dose, they will begin the process of reinserting the stem cells into my body. These are basically the seeds of a new immune system, one that we hope doesn’t have the capacity to produce new lymphoma cells. Over the next two weeks, they will keep me under observation and wait for my blood counts to come up. Once they’re up to a baseline level, I will be released. If all goes according to plan and I avoid infections and internal bleeding, that should be around May 1^st.
• I’ll be largely restricted to home for the next two months as I recover. In the initial going, I should expect to be pretty worn out and weak. The first 30 days, in particular, are considered to be a fairly vulnerable time for me and I’ll need to restrict visitors, avoid public places and so forth. By early June, I should be ok to begin venturing out on a limited basis.
• In terms of work, it now appears that I will not have to go on an extended leave. I’ll be completely out from April 13^th through May 1^st and then will be working from home in May and June, barring any major infections. The target for my return to the office is July 1^st, but that obviously will depend on how I’m doing. Thankfully, summer is quieter, so if I have to ease back into the swing of things, I’ll have a couple of months to do that.

If I return to my now well-worn analogy that this is akin to riding a Century on my bicycle, I'll be hitting Mile 75 at the end of the week, with 25 left to go. But the last 25 are always the hardest. Your tank is running on empty and the race organizers like to put a couple of tough climbs in there to separate those who have earned a place on the podium from those who have just earned the right to finish. I plan to be on the podium come July, and it's thanks to all of you for cheering me on as if I were climbing the Pyrenees in July with the rest of the peloton. Your love and support continues to mean the world to me.