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…

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.

Remission

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

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

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

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

All in the past, Steve. Shake it off.

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

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

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

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

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

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

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

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