Journal of Strong Living

Pan Mass Challenge Recap

2011-08-08T21:47:00.002-04:00

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.

&amp;amp;amp;lt;p&amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br /&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://www.mapmyride.com/routes/view/44874878"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;PMC 2011 Day 1: Sturbridge to Bourne&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br/&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br /&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://www.mapmyride.com/routes/?location=Sturbridge, MA"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;Find more Cycling Routes / Bike Rides in Sturbridge, MA&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br /&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;lt;/p&amp;amp;amp;gt;

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.

&amp;amp;amp;lt;p&amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br /&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://www.mapmyride.com/routes/view/45047266"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;PMC 2011 Day 2: Bourne to P-town&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br/&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br /&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://www.mapmyride.com/routes/?location=Bourne, MA"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;Find more Cycling Routes / Bike Rides in Bourne, MA&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br /&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;lt;/p&amp;amp;amp;gt;

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

2011-06-22T16:09:00.001-04:00

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.

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

2011-05-24T17:48:00.002-04:00

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

2010-08-24T19:29:00.001-04:00

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)

2010-08-20T19:58:00.001-04:00

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.

<a href="http://www.mapmyride.com/ride/united-states/pa/ambler/165128218333843801">Livestrong Challenge Philly Century Course (2010)</a> <a href="http://www.mapmyride.com/find-ride/united-states/pa/ambler">Find more Bike Rides in Ambler, Pennsylvania</a>
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

2010-07-22T09:34:00.003-04:00

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

2010-04-20T21:11:00.000-04:00

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

2009-05-28T20:56:00.004-04:00

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.

2009-05-05T20:28:00.002-04:00

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

2009-04-28T19:02:00.010-04:00

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

2009-04-26T20:49:00.002-04:00

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"

2009-04-22T07:18:00.008-04:00

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

2009-04-20T16:01:00.002-04:00

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

Either side of the elevator

2009-04-19T15:18:00.002-04:00

Greetings from Ellison 14 (medical oncology side, am not having another baby, but more on that in a minute)... when I got back from lunch a few minutes ago, Steve looked almost like himself: on the bike spinning his legs, with his shades on because it's sunny, and the music was blaring.

He hasn't had the nicest of weekends: the nausea has been nasty (bland chicken salad on white bread has been his diet for 2 days now), and the four walls feel constraining. I teased that maybe we could change the furniture around to mix things up a bit. That said, Steve is being positive, and woke up this morning deciding it was going to be a good day, and it has been so far!

So one of the fascinating things about Mass General - besides being the most amazing place for me to participate in my absolute favorite sport: people-watching - is that the 14th floor houses both medical oncology and labor/delivery. Steve and I actually noticed that on our way up here last Monday, and I decided to take a picture today. You can imagine what we thought of that juxtaposition.

Luckily Steve has every possible technology invention in here with him: laptop, webcam, kindle, internet access... we watched Jon Stewart and Stephen Colbert on hulu.com, and are about to watch "Lost in Translation" (Speaking of Bill Murray, we hope you all saw that he is such a bad golfer that at a charity event 2 days ago his drive hit a woman in the head across the street! He described it as, "Well, sobering...")

Finally, I felt like a fraud yesterday as I picked up my brother Phil's Boston Marathon bib... I carried the yellow bag of goodies to his hotel, and MANY people wished me good luck in the race. I decided to just be gracious about it...

PLEASE send emails - Steve's feeling the loneliness!

thanks,

Kathleen

Sharing the rules...

2009-04-16T20:04:00.003-04:00

Dear all,

Despite this stern looking note, the folks on Ellison 14 are quite nice and are doing their best to keep my favorite guy comfortable.

Some tidbits: As of tonight Steve is more than halfway through the chemo - thank God - and coming around to the virtues of Atavan (used to help his horrendous hiccups). They are pushing MEGA fluids, so the poor guy is only getting an hour's sleep here and there (although the Atavan helps with falling back to sleep, too... if it weren't illegal, I'd pinch one for myself!) At least he looks less puffy than yesterday, when he had put on 17 lbs from the day before, due to the fluids. Today he met with the Physical therapist and was happy to report -Steve is competitive!- that he is the only patient on the floor who knows his VO2 max. He doesn't have much of an appetite, but is well stocked in individually-wrapped, low bacteria options such as cheddar goldfish, granola bars, and Milano cookies. Oh, and he has a neighbor on the ward with mantle cell, amazingly.

The driving back and forth has been fine for me; I fell guilty saying that I've been able to open my sunroof for the first time this season... all this while Steve is stuck with filtered air and can't even venture into the hallway outside of his room. It's supposed to be 70 tomorrow; here's hoping we have the most gorgeous May/June ever, so that Steve can hopefully enjoy that while recuperating!

His spirits are high, his sense of humor is intact, and when I left he was speaking Greek with Kristina, one of the nurses. It's nice to be Thursday, and the way we see it, the faster this goes by, the BETTER...

Thanks for the thoughts and prayers,

Kath

2009-04-13T15:09:00.005-04:00

Dear friends,

Greetings from Ellison 14 at MGH; we had a quiet morning at home, and Steve-in his ever practical way-went and got his car inspected so I wouldn’t have to do it while he is in the hospital. The traffic on the Mass Pike was far easier than the elevator traffic within the hospital at noon; but before I get into the update, I do have a few favors to ask you:

1) If you’re really looking for something helpful to do for us right now, PLEASE CONSIDER DONATING PLATELETS or BLOOD. Steve will need many transfusions while he is here, and your platelets, if donated here at MGH, can actually be directed to Steve. The procedure takes about 2 hours, and unlike blood donations, you can donate platelets once per week, and there’s no need to be of the same blood type. (after 4/20 is better for platelet donations, b/c they’re usable within 3 days after cleaning) The number to call for an appointment (required) is: 617-726-8171/8177. http://www.massgeneral.org/blooddonor/ . Location is in the Grey/Bigelow part of the hospital

2) If you don’t have two hours to spare, “honorary blood donations” are also helpful; you can just walk in to do that Tuesday-Friday

3) If you come to MGH, please let me know: Depending on the day, what’s going on and how Steve feels, he might be able to see you; he also might not, and I hope you don’t mind that I’ll be fairly strict on this one…

4) Please don’t send cards, flowers or fruit – all forbidden! Steve can’t touch anything from “outside” and will be on a low-bacteria diet.

5) Please do send emails! We’re hoping to update this blog fairly regularly, so please sign up for the automatic updates

6) Steve’s SKYPE address is: smpratt89

Steve has a nice view of Cambridge, the Museum of Science, Longfellow Bridge, the duck tour boats, and even Goddard Chapel (for all my Tufts friends reading this!!) out in Medford. When we arrived, everything needed to be wiped down with a special product. In classic Steve form, the electronics are all set up: webcam, speakers, headphones, laptop and surge protector power strip…

It’s fairly quiet on this ward because there are only 10 marrow transplant rooms (all individual) with filtered air. Given the huge fear of infection, the cleanliness precautions are intense: Steve won’t be using tap water to brush his teeth, is forbidden from picking anything up from the floor, everyone who enters the room will have on gloves/masks, and he will have a designated chair (which will have daily plastic changes)… it’s an even longer list of things but ‘nuff said.

Despite Steve’s double-lumen “port” in his chest, he is also going to need a PICC (peripherally inserted central catheter); it’s a bit of a bummer because he’ll be connected to meds and lines on both sides. The four days of chemo start early tomorrow morning. Today is actually “Day 7”, and we’ll be counting down to “Day 0” which is the actual transplant day: God willing next Monday, the day my brother Phil runs the Boston Marathon! And for all you mathematicians out there, Days 1 and 2 are hopefully “rest” days, although given the chemo will be between five and ten times the potency of what Steve has had to date, we’re not expecting any of this to be restful.

So, on a lighter note, Steve spent Easter cooking lamb on the grill (that’ll be forbidden for a few months) and making banana splits with Roddy and Louis; last night, he and I had a quiet night getting ourselves ready for the weeks to come. I must say he is far more ready than I am, although I’m feeling a bit more brave now that we’re here, I see the set up, have met some of the staff, etc. Honestly, he just wants to get this over with - and as the one who has seen him even in the private moments, I can tell you that he is AMAZINGLY strong, focused and positive.

Last Thursday, Steve joined dear friends Ron and Suzanne, and their three adorable boys, for the Red sox game, and I met them all afterward at PF Chang’s. Let me leave you for now with the caption from Steve’s fortune cookie, “Your ability to find the silly in the serious will take you far.”

Tailor-made or what?

THANK YOU for the prayers and thoughts,

Kath

In Treatment

2009-04-06T17:34:00.009-04:00

"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

2009-03-16T18:28:00.009-04:00

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.

GO, PHIL, GO

2009-03-08T20:34:00.004-04:00

Happy Sunday night to all - Steve and I enjoyed a much needed "together and alone" weekend. It felt like Spring, he biked and I hiked, although we have another 3" of snow coming tomorrow. Speaking of cold with the hope for Spring...

My brother Phil sent out the amazing note below a few days ago - little did we know that he has been stealthily training for the Boston Marathon on his basement treadmill in tundra-like Wisconsin. Needless to say, the cheering section on April 20th as runners come through Wellesley will be LARGE (and for anyone interested in joining us, please let me know; we live a short distance from the Marathon route)

Here's a picture of Phil. It's incredibly humbling that he has managed to find time to train while also being a great husband/Dad, carrying a full neurosurgery caseload and running The Neuroscience Group. Along with whatever financial support you can provide (we do know that times are tough), please feel free to share any notes of encouragement. I'm going to pull together a scrap book for Phil and our family to remember this by.

Insha'allah (we are half Lebanese after all), the plan is for Steve to have Phil's microchip number so that, despite being in-patient at MGH, he can follow Phil's progress online that day. Here's Phil's note... and thanks for all the continued thoughts and prayers!

Dear family & friends,

Just 7 weeks from today, 25,000 official entrants will compete in the 113th Boston Marathon. I will be one of them, with the express purpose of raising money for a great cause.

The Multiple Myeloma Research Foundation (MMRF) is a nonprofit organization that is searching for better treatments, and a cure, for Multiple Myeloma.

As you may or may not know, my brother-in-law, Steve Pratt, was diagnosed in 2008 with Mantle Cell Lymphoma. As well, my cousin Bryan Ison and my close friend Mark Chelsky were both diagnosed with Multiple Myeloma, in 1999 and 2007, respectively.

These three men are “fighting the good fight” and are the inspiration for this effort, my first marathon.

I understand that these are tough financial times, but please consider opening your wallets, and your hearts

MMRF: http://www.active.com/donate/Boston2009/yazbak

Please forward this to others, as you see appropriate.

Thank you

Dishing out jokes but eating humble pie

2009-02-24T20:26:00.003-05:00

True to form–Steve’s form of course-there were some light, comical moments in the common chemo room today. There was the “serious” comment directed toward me from Dr. O’Connor, “You know, the behavioral issues I’ve had with Steve all reappeared in a matter of minutes today.” Same guy who has already said that some new chemo drugs come in suppository form.

And there was even a Guinness remark today, because we need one of those per session, especially if Dr. O’Connor is around. Steve, while pointing to the little old lady sleeping in the recliner while receiving her dark colored iron infusion, asked Dr O’Connor, “So why is it that her I.V. has Guinness and mine doesn’t? Does her insurance pay better?”

But better yet was the joke that Katie, one of our favorite nurses, and I had at Steve’s expense. Yes, I know, quite a feat because it doesn’t happen often that we get him with a joke. Katie was about to take out Steve’s I.V. line to his chest port, and pulled the pale blue polyester curtain around the two of them. I needed to move my tea from the arm rest of his chair so they could have their privacy… point at which Steve exclaimed, “Oh, Katie!” Except that he hadn’t realized that Katie and I took his exclamation to insinuate that something unusual–shall I say inappropriate?-was happening behind that polyester curtain. Steve was merely remembering something he wanted to tell her. Anyway, Katie and I howled, and it took Steve almost 30 seconds to catch on. Even the little old lady on the iron drip laughed before Steve did! (He claims that if we had had all the chemo we would have been slow on the uptake, too.)

On the more serious side, we have our meeting with Dr.-Not-Eliot Spitzer at MGH on March 10th, my brother Ed’s, fiftieth birthday. We also had interesting interactions with two other patients today:

First, we said goodbye to a young woman with breast cancer who started her chemo the same day as Steve, December 1st. She is now at the end of her chemo, and is facing radical surgery and reconstruction mid-March. I can remember our first day at chemo, and watching her struggle with the whole thing; she was reading a book entitled, “Surviving Cancer” and as the day progressed vacillated between anxiety and anger. Ever since then, we have seen her nearly every cycle, caught up each time and shared stories; she’s a really sweet woman, a Mom with young kids, and incredibly focused on getting through all of her treatments with a fair amount of serenity and level-headedness. It was an odd thing to wish her luck as she wished us the same…

The second patient starting chit-chatting with Steve during the obligatory blood work in the lab. He seemed quite the garrulous type (let’s just say he likes to “share”) It turns out he’s a banker, and also has mantle cell. It seems he has a different variant of mantle cell, and his treatment regime is different than Steve’s. Here’s the kicker: He has had six rounds of chemo and his CT scan is only showing him 70% cancer free; said differently, 30% of his lymphatic system is still riddled with the stuff.

This is where the humble pie comes in. We already felt grateful to know the stuff is doing what we need it to do; but we also realize that this isn’t exact science, and here’s a man with the same diagnosis and same team, in a really different situation.

So… given Steve’s love of cherries, I found this cute photo online. If you can believe it, the title of the photo is actually, “Cherry pie still life.” I couldn’t even make that one up!

And thanks for all the continued thoughts and prayers - we're humbled by those too!

Youth Advocacy Project Honor

2009-02-23T16:12:00.004-05:00

This is a lovely thing that my good friends at the Youth Advocacy Project have organized. I am truly honored to be honored as they said at the Academy Awards last night. Unfortunately, I'm going to be on the transplant ward at MGH but it sounds like they're going to try to beam me in via web cam for the celebration. If you can turn out and support a great cause while also showing your support for me, I'll be mighty grateful...

Save The Date!

Youth Advocacy Project’s

2009 Spring Celebration

Thursday, April 30, 2009

6:00—8:00 p.m.

Back Bay Events Center

180 Berkeley Street, Boston

Honoring our partners in the community:

Extraordinary Leadership Award

Stephen M. Pratt

CEO,

MY TURN, Inc.

Service to Communities in Need Award

Clementina M. Chéry

President and CEO,

The Louis D. Brown Peace Institute

Featuring entertainment by

The Gil Scott Trio

and a performance by

Ritmo en Acción

Hyde Square Task Force’s award-winning Afro-Latin dance troupe

Please contact Priscilla Duffy at 617-989-8125 or

pduffy@publiccounsel.net, or visit www.youthadvocacyproject.org,

for more information or to purchase tickets.

WHAT IS YAP AND WHAT ARE ITS OBJECTIVES?

The Youth Advocacy Project’s mission is to help Boston’s neediest children at some of the most challenging moments of their lives. YAP assists children in delinquency proceedings with effective representation in court, with educational advocacy, with psychological assessments, and with individualized referrals to community resources.

In addition to the traditional YAP Program, YAP also runs the EdLaw Project, providing educational advocacy to children in the Boston community, and produces Community Notebooks, which are books that serve as an informational resource for local professional who work with at-risk youth.

WHO ARE YAP'S CLIENTS?

YAP's client base is drawn from this state’s poorest population. More than 95% of YAP’s clients are children of color between the ages of 7 and 21, with 65% between the ages of 12 and 15; over 80% are boys. Over 70% of our clients live in Roxbury, Dorchester or Mattapan, and all are from families living at or below the poverty line. Typically, nearly 80% experience chronic difficulties in school, over 40% are truant, over 35% are chronic substance users, 20% are children of an incarcerated parent, 10% are pregnant or are a parent, and nearly 5% are homeless.

WHO IS YAP'S STAFF?

YAP's staff includes social workers, psychologists, community outreach workers, trainers and administrators, as well as attorneys. To be effective in the long run YAP helps each child address a host of concerns, including academic difficulties, mental and/or physical health issues, and the need for nurturing adult relationships and appropriate after-school programming. We are proud to be the first public defender office in the country to adopt what psychologists call a “Youth Development Approach” that addresses the needs of the whole child, not just the needs of the youth offender.

Being Bald Brings Big Bucks!

2009-02-20T15:30:00.003-05:00

Hi everyone: Here I was feeling sick and tired of the baldness in this cold weather and then I pulled up today's New York Times on the computer and found out that I can make some lemonade out of these lemons. You can read the whole article here.

So now for the rest of the news. As I have noted on the Twitter feed, I'm back to feeling almost normal, just in time for Round 5 of chemo on Monday-Tuesday. This round is the R-CHOP, which isn't so great on the tummy but is much less depleting than the ARA-C that I did for the last round. My white blood cell count, which was down at 0.5 last Thursday (prompting my doctor to say that it was like going out without skin on) has rebounded to a whopping 28.2 today, meaning that I can hug strangers and lick flagpoles if I want. Don't worry, I have no plans to do either, although I'd like to give Kathleen a long-overdue and much-deserved Valentine's kiss.

My platelets are also back up. They dropped to 17 last week, prompting a transfusion, and are now at 321. So no more nosebleeds, which is bloody good news. Sorry, I couldn't resist that one.

Speaking of blood, my red cell counts are still low, which appears to be chronic during chemo. The main effect of that is that I'm winded climbing three flights of stairs at the parking garage and I have only been able to bike 5 or 6 times this month. In the scheme of things, that shouldn't matter, but I really do miss my fitness and can't wait to be able to do stuff that I worked hard to be able to do. With any luck, I will get a shot of EPO, the stuff that got Tyler Hamilton banned from cycling after the Olympics for artificially boosting his RBC so that he could win the gold medal in the Time Trial event. Ironically, EPO is made by Amgen, the title sponsor of this year's Tour of California bike race. I wonder if they're giving out free samples. Anyway, with or without performance enhancing drugs, I am still planning to ride the Pan Mass Challenge in 2010 and will have to get back in training shape this fall once I'm on the other side of the stem cell transplant...

Kathleen and I are hoping to meet with Dr. Don't-call-me-Elliot Spitzer the week after next and get a better sense of what to expect with the transplant. I know that it will be in April and that I'll be out of action at least until the end of June but how out of action and what the limitations are, I can't say yet. The last time we met with him, we were both still in shock over the whole thing. As you can imagine, I've got lots of specific questions now that I'm close to this phase. Stay tuned for the answers.

Thanks to everyone for your lovely emails and postings. While it's hard to respond to every single one, please know that they mean the world to me. Keep 'em coming!

Valentine's Match

2009-02-14T10:30:00.001-05:00

We’re settling into a quiet weekend of music, games, comfort food and boys kicking off their February school vacation. You might have noticed that the blog doesn’t get updated as often as it used to; in part, that’s because when it’s tough and hard, we’re so intent on getting through that which leaves no energy for anything above and beyond…

For Steve, this week had some new events tied to it. Monday night as we were enjoying a great visit with a bunch of Eureka Fellows/friends, Steve received a phone call that his son Roddy had fainted. At 9pm, Steve left our house to drive to Arlington to be near Louis, while his ex-wife brought Roddy to Childrens Hospital where they spent most of the night. The great news is that Roddy is fine.

But Steve’s crashing white blood, red blood and platelet counts meant that by Thursday he was winded just walking up a flight of stairs; after a nose bleed, and a few emergency calls to Dr. Wisch’s office, he received a blood and platelet transfusion. Steve being Steve, he refused for me to leave my training session to join him at the hospital; in fact, he got onto the wireless connection and continued to work all afternoon.

Given my Lebanese roots and the cultural belief that “all things come in threes”, by Thursday evening it was apparent that Lucas had indeed shared his chest cold from last weekend with me, despite mega-doses of vitamin C and zinc as well as obsessive hand-washing.

Here it is Valentine’s Day and we can’t even hug each other, nor dance in the living room to our song, “Carrying a Torch”. I’ve been sleeping in Theo’s room, since he’s off at school, but on the bright side, Steve and I have invented the “Valentine wave” down the hallway.

But, do you want to hear the nicest part of the week? Steve and I are a match in a new way: our blood types are both a rocking A+!!!!

Steve's morning humor

2009-02-03T08:34:00.006-05:00

Greetings from room 401 at Newton-Wellesley Hospital; we're calling it the Rhode Island suite. Steve has already made both Joan, his nurse, and Dr O'Connor laugh out loud this morning:

Steve, "So we're thrilled about the CT results, but Dr. Wisch says I still can't have a Guinness."

Dr. O'Connor, " You really need an Irish doctor... If you went to Tommy O'Herlihy at the Brigham, he'd give you a Guiness too."

And then seeing the electronics set up in the room (Steve arrived with his own power strip even!), Dr. O'Connor commented, "I'm glad you didn't bring the XBox because we want the interns doing work..."

Nurse Joan, "OK, so no drug allergies... hmmm, what other information do I need?"

Steve, "I'm a Leo. That's really important."

Nurse Joan, "We need to weigh you now so they can mix the Ara-C."

Steve, "The Haagen Dazs dulce de leche was actually prescribed by Dr. Wisch, in case I've put on weight."

Never a dull moment, but as you all know we're hoping humor keeps the treatment as dull as humanly possible. Thanks for all the love and prayers, and as you can tell, Steve is looking on the bright side of this treatment.

Groundhog update

2009-02-02T19:54:00.004-05:00

Yes, I do realize that the cartoon is of a turtle and not a groundhog, but it makes me smile every time I look at it, and Steve has it taped to his computer monitor which meant I thought his fan club – YOU!!! - would want to see it. To add to the animal references, today was even Mighty Mouse day! The Rituxan was wonderfully uneventful, and we were home much earlier than anticipated. Tomorrow we head into Newton-Wellesley for 7:30 a.m… hopefully the Nor'Easter won't be too tough to drive through.

The fun part of today was catching up with Dr. Wisch. After he shared with us that HE had a great weekend because of Steve’s news on Friday, the guys spoke of their favorite Super Bowl advertisements: Hulu.com with Alec Baldwin, the Doritos commercial with the crystal ball, and (Dr Wisch’s favorite) the monster.com one with the Moose whose backside is hanging over a guy’s head, in the ante-chamber of a stuffy men’s club, with the caption, “It’s time to find a new job... We can help."

Interestingly, discussing the Moose came after an impromptu dissertation of our favorite Woody Allen lines of all time, including “Showing up is 80% of the game…” (Dr Wisch’s) and “I’m not paranoid, they really are after me” (mine) Steve will be adding to the Woody Allen mania by burning, for Dr. Wisch, a CD of a stand up act Allen gave in 1962. Yes, Sandy, this is the recording that includes the following lines, “I was driving, upstate New York, with a live moose strapped to my trunk…” followed by, a few minutes later when the moose was attending a costume party at which a couple was dressed as a moose, “The Berkowitz’s and the moose locked antlers in the living room.” (shhhhhh, please don’t tell Dr. Wisch, we want this to be a surprise)

On a serious note, we remain incredibly grateful that we’re on the track we need to be on, and we don’t take that for granted. It’s still a long haul from here, and Dr. Wisch really made the point of saying that he’s not letting down his guard, that the dosages will continue to be high, and the medication(s) will continue to be nasty.

So let me thank you for your continued warm/positive thoughts, friendship, visits, support, funny jokes, food care packages, foot bath deliveries (Barb, let's keep 'em guessing about this one) and -- above all - love and prayers

Remission

2009-01-30T20:58:00.004-05:00

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.

Pork CHOP Report

2009-01-14T08:05:00.005-05:00

Greetings from frigid Dover, where the temp is a fast-plunging 15 degrees with a 20 mph wind out of the northwest . Should be below zero tomorrow. Good thing I'm inside on my comfy chair with my sleeping bag and Lucy to keep me warm while I work from home and recharge the day after Round 3 of chemo.

You'll recall from earlier posts my mantra that "boring is good" right now. If that's the goal, we're doing exceedingly well. After those crazy-low red blood cell and platelet counts of a few weeks back, the numbers came back up to normal and then some by last Friday, so no transfusions, no spontaneous bleeding. I'm certainly more run down due to the RBC effects on my ability to process oxygen. I've continued to work out, but any thought of "kicking ass" on one of those Spinervals DVDs has been replaced by the old Nike slogan, "Just do it." So I've dialed back the intensity of the workouts by shifting down a gear or adding an extra minute of recovery in between sets, but I still got in 19 miles yesterday morning before beginning the second day of this round of chemo, and that felt great, both physically and psychologically.

For those of you keeping score at home, I have two different chemo regimes, which alternate every 3 weeks for a total of 18 weeks. So the odd-numbered rounds (1, 3, & 5) feature the R-CHOP drugs, administered at my doctor's office, spread over 2 days. The even-numbered rounds (2, 4 & 6) feature the ARA-C drugs, which require the 48-hour in-hospital treatment. The R-CHOP tends to make me feel more nauseous but the in-hospital stay leaves me massively sleep deprived, which is worse than the drugs.

All I can say about this round is, "so far, so good." While I don't have a voracious appetite, I don't have the hiccups and acid reflux that did a number on me after Round 1. I got a good night's sleep last night, and I was able to work on my laptop at the oncologist's for most of yesterday's treatment, which is good, because as I wrote earlier, running a nonprofit is more challenging than cancer.

Because I told the nurse to give me the "Lamb CHOP" in Round 1, I asked her to go with the Pork CHOP yesterday, specifically one with a bourbon-maple glaze. The other patients groaned in either misery or appreciation at this image, but I don't think I hurt anyone's appetite. One of the ladies across from me ate a large steak & cheese sub while getting her drugs. More power to her.

The best thing about the drugs you get is the massive dose of Benedryl they give you on day 1 with the Rituxan ("Mighty Mouse"). This dose conked me out for over an hour on Monday, and I told the nurse that it had the quality of a 12 year-old single-malt: "Please pass along my compliments to the pharmacist."

Today, I have an all-morning conference call for work and then go back to the doctor's for the Neulasta shot which will stimulate my white blood cells and give me that lovely bone pain seven days hence. I have a CAT scan at the end of the month to check my progress toward eradicating the lyphoma cells (there are some barely detectable lumps in my neck, but the ones under my arms and in my groin have entirely disappeared already). I'll be in for Round 4 at Newton-Wellesly hospital the first week in February.

But that's for another day. Right now, all I can say is Hey, I'm halfway through chemo!!! I'm still biking, still eating, still working and still a wise ass. We're going to do this, people. One mile at time, but we're going to do this.

PS: A number of you have had some difficulty figuring out how to subscribe to the blog using the "Follower" function or using RSS or Atom feeds. I've just added an easier way to subscribe, via email. You can activate it by clicking the box in the right-hand panel below. If you're on Facebook, you can also follow the links at right for instructions on how to get updates from this blog fed into your Facebook page. Hope this helps!

It was QUITE the vacation...

2009-01-06T20:22:00.003-05:00

Just had to respond -- and NO not about the pumpkin pie (because I love that stuff) -- but about Steve's comment about my being back from Florida to take care of him. He made it sound as though I had a long, luxurious, restful trip; here's the truth: I spent a whopping 48 hours on the ground, 5 of which were spent racing around Busch Gardens with Theo and Lucas! I do think that $10 per hour for the duration of my stay to be in 70 degree weather maybe was a pretty good deal after all...

So, I am trying to take care of Steve, but there are two issues with that:

1) He is actually being incredibly reasonable all by himself. Really, he is NOT pushing too hard and is indeed listening to his body... last night he went up to bed at 8:30, which I don't think I've seen him do since his last red-eye flight

2) There are moments when I'm much more of a basket-case about all of this (there's a feeling at times of having had the rug pulled out from underneath me) and he needs to lead me through deep-breathing exercises... luckily I'm good under pressure when it counts (serious medical meetings, getting it all scheduled, etc)!

Thanks for all the thoughts and prayers - we're gearing up for Round 3 on Monday....

Pumpkin Pie Cures Cancer

2009-01-06T11:49:00.001-05:00

Good news from that oh so reliable news source, The Onion:

Epiphany, Three Kings, Etc.

2009-01-04T16:56:00.005-05:00

Hello everyone: we hope you made it through the holidays in one piece, deftly navigating the various obstacles thrown your way: blizzards? flight delays? fruit cake? family "togetherness?" I'm not saying any of you specifically experienced any of these things. I'm just saying, is all.

Aren't the holidays super?

Anyway, we're past all of that, heading inexorably to an Epiphany on Tuesday (a.k.a., Three Kings Day, Little Christmas, The Twelfth Night). My big epiphany is that the holiday break is over and it's back to the reality of running a nonprofit in the middle of the worst recession in 80 years come tomorrow. As my surgeon pointed out back in November, doing that may be more challenging than fighting cancer. I just finished reading the results of a Bridgespan survey of nonprofit leaders on how they're navigating the downturn. The news is the same all around: funding is down, demand for services is up, and all of us are trying to hold on to staff people who have sacrificed to get us where we are today. Something's got to give, and in the coming months, I think it certainly will for many organizations. How we navigate these moments by cutting smart rather than cutting in panic will tell the tale of our ability to have impact.

In the face of that, dealing with the effects of my "Maxi CHOP" treatments seems to be a passing annoyance. Seriously. OK, I will tell you that the aftermath of Round 2 was decidedly more difficult than Round 1. It's hard to say how much of that is due to the highly toxic ARA-C chemicals pumped intraveneously into my system over 48 hours and how much of it is due to getting just 3 or 4 hours sleep over the two days I was in the hospital. I suspect it was the latter, because even in good health, I'm a little past the time in my life when pulling back-to-back all-nighters was a good idea. At 45 and with a system already under duress, it took me like a week to get back to feeling normal.

After Round 1 with the R-CHOP, my white blood cell counts plunged to a dangerous low 7 or 8 days later only to come back to normal just before I started Round 2. This time, my WBC dropped but came back to normal by this week, thanks to my Neulasta shot. Unfortunately, my red blood cell counts dropped dramatically this week, which means that my blood cannot process oxygen well, so doing bike intervals with Coach Troy is much harder. I found my heart rate in the top of my zone during warm ups and had to ease back on some of the sprints. I got it done, but it's definitely a case of listening to my body. When it says no go, I don't go.

The more dramatic drop was in my platelets, which went from 271 on Dec. 26th to just 13 when I went in to the oncologists' a week later. A normal platelet count ranges from 150-400, and my lowest count before Friday was 174 (yes, I keep an excel spreadsheet on my phone with all of these stats which will surprise no one reading this I'm sure). If the count drops below 10, I will need a transfusion. As it is, I'm at risk of "spontaneous bleeding," which sounds lovely. It means that little blood dots may mysteriously appear inside my cheeks and my nose might bleed for no good reason. If anything bleeds and doesn't stop, I will have to go into the ER. Thankfully, that hasn't happened yet.

For any of you who are going to see me this week, please suspend our normal ritual greeting with swords. I am also giving up my chain saw for Lent a few weeks ahead of Ash Wednesday.

Lest you worry about me, let me assure you that my spirits are fine and I am continuing to do my best to live a boring life in a crazy world. My brother George and my boys spent the last week with me and we cooked pizza from scratch, made s'mores in the fireplace and had our annual Lord of the Rings film festival as we do every holiday season. Lucy and I went on a nice, four-mile walk this afternoon and I have been watching Alec Guinness playing George Smiley on DVD all weekend. Kathleen is back from Florida to take good care of me. Other than looking like the bald bad guy in every James Bond movie, I'm ready and eager to get back in the saddle tomorrow.

Here's hoping that all of you are just as ready for whatever awaits us in 2009. As I suggested in the poem I wrote today over on that other blog of mine, it's far better that we look skyward right now. I'd rather not think about what we're collectively stepping in at the moment.

Yule or Yul?

2008-12-25T21:02:00.004-05:00

Yule tidings to all! We’re grateful to be home after Steve received his high dose Ara-C chemo treatment at Newton-Wellesley (free parking on Christmas Day, by the way). From the attached photo please let me know if I should call him Yul (Brynner) or buy him lollipops (a la Telly Savalas). Views/votes?

Steve is fairly exhausted but that’s more because of the “screamers” on the chemo ward the last two nights than any specific side effects. We had none other than Dr Wisch personally attending to this first of three cycles of the Ara-C; he seemed relieved to hear that Steve was mostly bored for the 48 hours. His direct quote was, "I like boring. A LOT." It is fairly disconcerting to see all the hazardous chemical warnings and special trash bins for the IV materials with this cocktail. Every 9 hours, Steve needed to have neurological testing done because Ara-C can affect the cerebellum and thus fine and gross motor function (ugh). In classic Steve fashion, he renamed one of the neuro exercises “the cancan” and even hummed along to Dr Wisch’s delight this morning! Yup, some guys will do anything to get released from the hospital…

He also promised Dr Wisch to touch his own nose next time. (Just kidding, but Dr Wisch did say that he has had patients touch his nose before!)

Tomorrow Steve gets another shot of Neulasta to stimulate his white cell production, and Monday we’re back at the doctor’s office again to document his plunging white cell counts. But most of all, we’re grateful to be home with a lot of movies still to watch in Alex’s great duffle bag of treasures, some more yummy shepherd’s pie, and the prospect of seeing most of our brothers this weekend.

Remember to wish Steve a Happy Feast Day tomorrow – he is convinced that December 26th is better known for the St. Stephen piece than for the sales-Boxing Day stuff. Let’s not burst his bubble, OK?

Hugs to all,
Kathleen

Grace

2008-12-23T18:01:00.005-05:00

Well, I'm nearly through the first day here at Newton-Wellesley Hospital, and based on my rate of shedding, I predict that I will be bald as a pool cue by St. Stephen's Day on Friday. Lest you feel some pity for me in that revelation, let me direct your attention to the above photo for a prime example of the bed head phenomenon that was me prior to getting my buzz cut a couple of weeks back. I'm talking Big Apple Circus bed head here, not the stray cowlick here or there but a high-altitude, high-wire act that was not appropriate for viewing by the young or those suffering from cardiovascular challenges. Goodbye bed head; you won't be missed.

I took the first dose of the ARA-C from 10:30-1:30, and I'll get the second dose at 10:30 tonight. Doses 3 and 4 happen on the same timetable tomorrow, and then with any luck, I'm out of here late morning on St. Stephen's Eve (also known to some as Christmas). The first dose appears to have gone down well, thanks to a host of anti-nausea drugs now coursing through my system like the snow-clogged Charles River just around the corner from here (OK, I'll save the poetry for the other blog). The good news is that it's so far, so good. I've eaten two square meals (very square: turkey, mashed potatoes and gravy) plus some potato chips and cookies that Kath was good enough to smuggle in from the commisary downstairs (I told her that she "gives good nurse."). I don't yet have any of the neurological side effects that cause some ARA-C patients to lose sensation in their extremities and have difficulty signing their names, which can make it difficult for them to pay their bills so they won't get released until they can (just kidding)...

You've had a chance to read Kath's earlier post, which was lovely. She should have no performance anxiety on this blog as far as I'm concerned. As she wrote, members of Class V from the Eureka-Boston Fellowship that I ran back in the day came over for dinner last Wednesday. I love all of the nonprofit leaders who were part of that amazing network that we built together from 1999 to 2003 (and that lives on in the Massachusetts Nonprofit Network). This particular class has a special place in my heart because they have continued to meet regularly and informally in the five years since their program ended, enduring marital crises, personal tragedies, new fixer upper homes, professional duress, and much more and continuing to hold each other close whenever times got tough for one of us. So no surprise that Mark, Sandy, Phil, Sarah, and Renee should show up with crazy amounts of Redbones barbeque and the kind of friendship that can carry you through the darkest times.

As I told them that night, these are by no means the darkest times for me. In the past two months, I have been reminded in myriad ways of how many people I have had the chance to touch and be touched by going through over two decades of trying to see if we couldn't maybe someday give kids born in poverty the same lucky breaks and the same second chances that guys like me carry around like a birthright. And well we should carry them around as such; but only if every other child, regardless of circumstance carries the same rights.

Which leads me to why I know the times are not dark. One of the Eureka Fellows at dinner last Wednesday works at Boston Healthcare for the Homeless' McGuinness House, which provides respite care to patients with long-term illnesses. When I talked about my work with MY TURN in Brockton, she told me about a patient from Brockton who has just been transferred to their facility so that he can begin chemo. He can't do chemo in a shelter because of the potential exposure to pathogens that could kill him with a compromised immune system.

So while I sit here in my private room at Newton-Wellesley hospital, paid for with generous health insurance benefits and arranged through that Lebanese-Egyptian-Rhode Island mafia I celebrated in an earlier post, there's a man just like me, but for the grace of God, who will walk a much harder road. Not a hopeless road, thanks to Healthcare for the Homeless, but a far more daunting road.

Everytime I get pricked or prodded here over the next few days or lament where I'm spending part of Christmas week, I turn my mind to this brave soul a few miles away from me. A brother in arms. I'm as lucky as they get and I will never, ever forget it.

OK,OK, OK Already

2008-12-22T15:07:00.002-05:00

OK, OK, OK already… so you all know what I’m feeling: just how can I keep up with Steve’s amazing writing and poetry? Isn’t it intimidating to share a blog with him? The answers are: I can’t and YES! So I’m just going to be me. Hope that’s OK with you, because it’s really OK with me.

We’re here at Dr Wisch’s office. Steve is asleep – thanks to a few doses of Benadryl; the infusion of the Rituxan seems to be going well. Tomorrow morning we need to be at the hospital about 6:30 a.m., for the Ara-C "round". This is the 2nd chemo series, and alternates with the CHOP. We’ve been told to expect that the nausea will be more noticeable with this round, and Steve continues to have a positive attitude along the lines of, "Just bring it on and let’s plow through this…"

Speaking of plowing – we have over a foot of snow at the house. The two back-to-back snowstorms this weekend were undoubtedly organized to wreak maximum havoc on my nervous system. I’ll spare you the details but suffice it to say that thank goodness all four of our boys are safely in their tropical destinations for Christmas, my mother is a saint for flying up to get Theo and Lucas and then flying back to Florida (timing BOTH legs of the trip to coincide with a snow storm), and I survived a treacherous 2+ hrs ride home from the Providence Airport last night. (Let me just say my knuckles are still white today) Steve loves all things mechanical and refused to let me use the snowblower; I think the next storm is on me, however!

We did celebrate Christmas on Friday night with the boys, and amazingly, we actually succeeded in choosing gifts this year with which everyone was HAPPY. It just goes to show that being really focused and not having a lot of time to make ourselves crazy about Christmas gifts is a good thing… as is online shopping.

We’re grateful, too, for some fun and lovely friend visits this last week – the timing was great with Steve’s white blood cells rebounding, and schedules working out. Thanks to Andrew, Renee, Sarah, Sandy, Mark and Phil – and of course Aunt Debbie and Uncle Joe - for making the trek to Dover!

As predicted, Steve is losing his hair, in fairly large clumps. He’s really doing OK with it, although I teased him that he had the misfortune of wearing a black sweater yesterday so that we could calculate the number of hairs lost. Let’s just say it’s a lot. Oh, and he’d want you to know that the BACK HAIR IS COMING OUT. He’s going to thank Dr. Wisch for that one –

Hugs to all -

p.s. I just looked online and have to say that I’m sorry to bump Coach Troy out of the top slot on the blog…

Coach Troy

2008-12-13T17:12:00.007-05:00

We're enjoying a mellow weekend over here and I'm feeling just fine. Put in a regular week of work and did all of the things that you wouldn't expect a guy with cancer to be doing. My favorite line from Monty Python And The Holy Grail often comes to mind these days: "I'm not quite dead, yet."

Living a normal life includes resuming my normal bike training routine during the winter, which is doing a variety of interval drills with my bike up on a folding trainer under the direction of Coach Troy Jacobson, who has put out a bunch of DVDs under the name Spinervals. These DVDs have a couple of benefits: (1) they keep you from being bored out of your skull while sitting on a stationary bike in your basement at 5:30 a.m. and (2) they push you to challenge your own limits and build more endurance and power reserves when you get back on the road.

I've started posting my training log on the right-hand side of this blog, partially to brag, but mostly to reassure you that I really am doing ok. There will be ups and downs, usually for the days around a chemo treatment, but for the most part, I should be able to live and work and play as I normally would, with the exception that I am absolutely positively not going to shake your hand or share a swig out of your beer bottle given my dangerously low white blood cell counts.

I eased back into my training regime earlier this week with relatively short, lower intensity (for me anyway) rides of 30 and 42 minutes, respectively. Today, I planned to do about an hour and a quarter, covering about 30 miles in that time, following Coach Troy's DVD called S pinervals 22.0 - Time Trialapalooza.

So, I was in my spandex (sorry, no pictures--for which former colleagues at Boston Beyond breathe a sigh of relief) about to head down to the basement when Kath brought in the mail before heading out to run her errands. At the top of the pile was a padded envelope from Troy Jacobson MultiSport, postmarked White Hall, MD. I tore it open to find a brand new Spinervals DVD (Spinervals 28.0 Aero Base Builder IV) and a hand written note from none other than Coach Troy himself:

Dear Steve:

Happy Holidays! Kathleen sent me a note about you. I wanted to first say that I wish you all the best in regard to your treatment--and recovery. Being fit will be a huge benefit. I also wanted to thank you for using Spinervals DVDs as part of your training regimen. I hope you 'enjoy' them. Finally, be strong, ride smart, and keep the rubber to the road.

Best wishes,

Troy Jacobson

I have to say that this simple note, from a guy who I have occasionally cursed as a sadist with corny jokes (pretty much an extension of my own personality, I guess) moved me to tears. So many of you have written me emails, called me, sent me cards, and done so many, many loving things to let me know that I am in no way alone in this struggle, that I have as big a cheering section as Lance Armstrong ascending the Alpe D'Huez. And now, thanks to my amazingly loving and resourceful wife, I have this half stranger/half household fixture cheering me on.

So, I went downstairs and posted that note right next to my bike on the wall, climbed on and proceeded to kick the crap out of Time Trialapalooza putting in as good a time as I did before chemo.

Life goes on, and I plan to go on living. As I've written before, please don't grieve for me, because I am not grief-stricken. I am counting my lucky stars for each and everyone of you. And for Coach Troy. And especially for Kathleen.

Mile 2

2008-12-08T20:24:00.007-05:00

Well, we're about a week into this.

There are all sorts of tired sports cliches that I could summon to ground us, to give us some navigation tools in this undiscovered country. I prefer to think about the centuries for which I've trained and ridden off and on for the past 20 years of serious cycling. A century is a 100-mile bike race, and it's more or less on par with running a marathon. I've completed a bunch of them, usually breaking five hours. To ride a century requires at least 10 weeks of focused training, covering between 150-250 miles a week.

How do you get through that kind of training and keep going? How do you punish your body and find something left in the tank for that last hill?

One mile at a time. The key is to discipline your mind to stay in the mile you're riding and to know your body well enough to know how much to keep in the tank for the miles to come. If you ride a bad mile, you make up for it in the next one.

OK, I think I've made my point. This is a century, and we're at Mile 2. One week into chemo, and I'm actually feeling more than OK. As Kath wrote in her earlier post, I had a couple of rough days last week where I felt a bit run down and nauseous. But honestly, I felt the same way both times Bush won, and I got over it.

We kept a bucket in the bedroom last week, and I never had to use it. A no bucket night is a good night. By Thursday of last week, I was able to work a full day. On Friday, I drove down to Rhode Island for a board meeting for MY TURN and felt fine. Amazingly, I'd been craving baked ziti all week, and wouldn't you know that my wonderful assistant, Jennifer Travers, had ordered it for the luncheon that day! Talk about a mind reader.

The board was incredibly supportive and helpful, which was an enormous comfort. After the "business" part of the meeting, we came downstairs to have lunch with a dozen key stakeholders of our Rhode Island programs. Wendy Mackie, our Rhode Island Executive Director, wowed everyone with her energy and vision for the program. But what I took with me on the car ride home was the words of the principal of Mt. Hope High School in Bristol: "MY TURN has saved at least 15 kids from dropping out so far this school year." If that isn't worth dragging my sorry ass out of bed and riding the next mile, I don't know what is.

The boys and I had a good, low-key weekend together doing normal things like going to Guitar Center to jam on instruments we couldn't afford, working on ridiculous science project homework assignments, and most entertaining, going to the New England dog show, so that Louis could see the running of the West Highland Terriers. This was a down-market version of the movie "Best In Show," with more pathos than comedy. That said, getting a chance to see a dozen corgies with their owners trotting out to the parking lot and back might have been the oddest sight of a very odd human/canine assemblage.

Don't let cancer own you was the advice that's stuck in my head these last few weeks--not unlike the bike racing maxim that you have to own the course, not let it own you. Sticking to the normal, even the abnormally normal things like dog shows, is my way of owning this course. A couple of miles into this very long ride, I'm keeping my cadence up and making sure there's plenty in the legs for the miles ahead.

RESOLVE

2008-12-05T07:14:00.002-05:00

OK, Stephen Colbert I am not, but “word of the day” did enter into my mind this morning… and I thought we could use “RESOLVE” for this first day. It has quadruple meaning in my life this morning…

1) How proud I am of Steve and his resolve… this week wasn’t fun, although he will continue to be Mr. Funny on this blog. His energy sagged this week most days around 4-5pm, he wasn’t hungry (my homemade turkey sausage and sage soup – made with love – went untouched), and even his coffee doesn’t taste the same anymore. Steve not finishing a cup of coffee - what will Starbucks do? Susan in SF (thanks for the tip!) said that lemon sorbet is the best thing for the metallic taste in the mouth after chemo. Steve said, “Well I’ve never liked lemon sorbet before but given all the stuff I like tastes awful, we’ll give it a whirl.” He is still not sleeping well – the port in his chest sits on bone, and given he has no fat on his body, hurts like a son of a gun. And the flu-like symptoms have been nasty… the shot he received yesterday helps to stimulate white blood cell growth, and it “pulls” from your bones. In Steve’s case, the site of his marrow specimen in his pelvis is the epicenter of discomfort.
2) Resolve is also the name of the rug disinfectant I used after Lucy the Westie vomited on Louis and Roddy’s floor and pee-ed in Lucas’ room. Steve said she doesn’t understand me when I call her out for that inappropriate behavior. She was looking mighty contrite to me, so maybe she’s smarter than those “Far Side” dogs by Gary Larson. By the way, one of my favorite all time Far Side cartoons was entitled ‘What dogs hear’: “Blah, blah, bllah, Lucy, blah, blah blah, blah Lucy” (my other really favorite one had the dog driving the car, and the man in the passenger seat with his tongue wagging out of the window)
3) Resolve relates to my drive to have Lucas (13) keep his hands clean. I am dogged, persistent and down-right irritating about it. “PLEASE WASH YOUR HANDS” is my new mantra. As if my teenager didn’t dislike me enough before all of this…
4) I am now resolved to hop on the bike in the basement and use one of Steve’s intense biking DVDs. This is because I am resolved to not put on 25 pounds during the next few months. Let’s just say that my resolve as it relates to Lindt 85% cacao this week has been poor…

Some lighter moments in our life this week…

A) Steve: "I think it's an American thing... I mean, I'm really going to support those cash-starved pharmaceutical companies." Kath: "Gee, I'm so glad this stuff makes me sleep, I guess I'm helping those poor pharma folks in my own little way, too." Steve: "Well, I'll meet you there and raise you four (more drugs)..."

B) My brother Gene called from Pennsylvania and simply asked, “Do you have the bumper sticker?” to which I replied, “What bumper sticker?” and he said, “The GOT CHEMO bumper sticker?”

C) Steve showing me his bruises on both arms from blood tests (each day) and saying, “Maybe when this is all done I can do that cage-boxing thing… if I can survive this, I can survive that!”

We’re hoping for a quiet non-eventful weekend. Steve got the OK from Dr Wisch to take Louis and Roddy to the car show (as long as he doesn’t kiss anyone there). Lucas has a swim meet tomorrow, and he/I will head down to the Cape to take Theo out for brunch on Sunday. We’re also hoping to set up the Christmas tree with the boys; Dr Wisch’s advice to Steve was, “It’s fine, just don’t lick the tree, OK?”

Love,
Kath

p.s. I hope the Republican followers (my brothers!) don't take offense at the use of the word resolve - I do love you guys! ;)

Steve's Lamb CHOP Report

2008-12-03T07:15:00.008-05:00

Hello Gentle Readers: As expected, Day 2 is when the chemo effects started to become real. It's amazing how much macho bravado gets knocked down by the reality of running the medical equivalent of battery acid through your veins. Yesterday was the CHOP part of the R-CHOP regime. You can read Kathleen's erudite post below to learn more about that. All I wanted to know was where I would be getting the lamb chop or the pork chop. They let me go with the lamb. Speaking of food, one of the drugs they gave me was called something like "aloxy" and I did give the nurse pause for a moment by asking if I could get "a bageley" with my aloxy.

Things change; things stay the same.

Anyway, I felt fine while I was at chemo, which was a good three hours. Thanks to the wonders of Wi-Fi, I was able to get a handle on my inbox, write a poem (which involved me double-checking the difference between turgid and turbid, thanks to Google's handy-dandy online dictionary), crack more bad jokes with the nurses and patients, write more emails—in other words, I was mostly bored out of my skull.

Don't get me wrong. Boring is good. I've been way too interesting to my doctors and my friends and family the past month, even for an unreconstructed narcissist. The day this whole ride started, in early October, I had been at my internist's office for a routine blood pressure check. He brought in a Harvard med school student who follows him on Thursday rounds and made some offhand joke about most of the patients being boring, especially fit, healthy 45 year-old males with hereditary hypertension. He then asked if there were any other medical issues I wanted to ask him about, and I brought up these swollen glands in my neck. Within three minutes, the tenor of the meeting had changed and my doctor said to his student, "Well, you got to see something interesting after all."

So everything going according to normal—blood chemistry, tolerance for the meds, water retention, etc.—is exactly what we want. Of course part of normal is getting nausea later in the day. Don't worry, I won't get too graphic here and give you specific colors, consistencies, etc. You need to have some room for your imaginations to run wild. When I got home from chemo, I was feeling a little light-headed but otherwise fine. I took Lucy on a 45-minute walk since it was sunny and the two of us had a nice time. I then sat down and continued working on a deck for the MY TURN board meeting on Friday. By 5:00, I was out of gas and crashed on the living room chair with NPR for white noise. When I woke up, my stomach let me know that we weren't in Kansas anymore.

The good news is that I did not throw up, but I did feel my stomach at work all night long, so not the greatest night of sleep ever. I'm keeping myself hydrated and just made myself a hard-boilded egg and toast for breakfast, to help wash down the five prednizone tablets, the emend anti-nausea pill, the allopurinol to keep my kidneys functioning while all of this stuff runs through me, and the blood pressure pill that started this whole thing. Well actually, that last one may just end up having saved my life, my internist's snarky comments notwithstanding.

Today, I head in for more blood work and a shot of something that is supposed to stimulate generation of white blood cells. I may actually go into the office for a little bit, but don't worry. If my body says no, I will listen.

Hugs to all of you for your amazing support and friendship,

Steve

Day 2 and Lymphoma 101

2008-12-02T12:17:00.002-05:00

Steve and I are sitting at Dr. Wisch’s office with an adorable lady named Frida and her daughter; it looks like Frida isn’t winning in the cribbage game, but her spirits are high. It’s a full house in the chemo chairs today – I’ll probably get bumped out to the waiting room soon.

Today, Steve receives the “CHOP” part of the R-CHOP cycle which is part A of the regimen (part B will be the inpatient Ara-C in 22 days). “CHOP” is not a Ronco product (nor, I reckon, does it only cost $9.99) but it is:

cyclophosphamide (brand name cytoxan, neosar)
Adriamycin (doxorubicin / hydroxydoxorubicin (ref))
Vincristine (Oncovin)
Prednisone (sometimes called Deltasone or Orasone)

This is the real-deal chemo, and will make him nauseous and lose his hair… he did want to add that not having “bad hair mornings” upon wakeup should have been on the Top 10 list he created yesterday. And Thursday is the day Steve will get his super short buzzcut; apparently his hair will fall out within a couple of weeks.

By popular demand, here’s some of the science behind what we’re learning right now. It has been helpful for me (“helpful” is a relative term) to know about the mechanics, especially as I know a bit about the immune system given my boys’ autoimmune issues. I’ll just say that my learning curve is still steep, and while this is all logical it is still hard to really comprehend. And I’m sure I’ll be tweaking this as I understand more b/c it may not pass a medical professional’s muster…

Lymphomas are a cancer that start in the lymphatic system (our bodies’ first line of defense); they are officially a blood cancer b/c the lymphatic system and the blood cell-forming system in bone marrow are closely related. There are actually three types of lymphocytes (lymphatic cells) that travel around the body: T cells (created in the thymus), B cells (created in bone marrow) and Natural Killer/NK cells. B lymphocytes make antibodies in response to foreign antigens, especially microbes. Antibodies basically attach to a microbe, thus making it possible for other white cells to recognize the antibody and ingest it into the cell along with the attached microbe. The cell then kills and digests the microbe. So, the background here is that B lymphocytes – by their very nature – are mutating all the time. (This adds to the complication in treating a B-lymphocyte cancer, because we need those lymphocytes to mutate, in the future, for the right reasons but not to mutate for the wrong reasons. This is a different mechanism from an organ cancer which happens when a bad cell is formed and divides and divides to form localized tumors)

There are two kinds of lymphomas: Hodgkins and non-Hodgkins. There are then more than 30 non-Hodgkins lymphomas (NHL). 90% of NHL’s are B-lymphocyte lymphomas, including mantle cell; there are 14 different kinds of B-cell lymphomas. (Mantle cell is one of the rarer of the B-lymphocyte lymphomas) Are you confused yet? Just wait!

Dr Hochberg had a great way of explaining how the immune system has evolved and needs to work. Basically it has two jobs: to respond to threats (bacteria, pathogens) and not to respond to every protein or cell in the body (b/c that can cause autoimmune disorders like rheumatoid arthritis).

So, imagine a Chinese food menu (Steve commented to Dr Hochberg that he hates Chinese food, but I like Chinese food so I stuck with the lesson) with 9 soups, 8 salads, 12 appetizers, 6 chicken dishes, 11 beef dishes, 7 starch dishes, etc. Imagine all the possible combinations that the system would need to remember; and by the way, it’s all arranged in a linear way with enzymes cutting and rearranging the DNA. So, just imagine how many opportunities there are for mistakes to happen with all those combinations.

In Steve’s case, a mutation developed (a bad menu combination) and his immune system missed that bad cell. (And then it spread – because the lymphatic system is, indeed, a system) Literally, the DNA was rearranged; the system reached into chromosome 14 and matched it to Cyclin D1 for those of you interested in the detail.

The single biggest factor for lymphoma is age – because mistakes are more likely the longer the system is at work. Other activations of the immune system (such as HIV, or autoimmune disease) might show an immune system fragility. The former is Steve’s case, not the latter. In fact, mantle cell lymphoma usually occurs in people much older than Steve – just adding to how special and unique he is.

Seriously – the main concern with mantle cell lymphoma is that it has a notorious track record of coming back and being harder to treat the next time… hence the reason, we are raising our non-alcoholic glasses to the geniuses behind the Nordic Regime (more on that in a future blog)

On a lighter note, my friend and colleague Jengie shared some important insight into Mighty Mouse: “A quick fun fact about Mighty Mouse and my family - When my grandmother first came to this country she was a private nurse to Mr. Paul Terry, the original Mighty Mouse cartoonist. Basically he adopted my grandmother, mom, aunt and uncle and they lived on his estate when they immigrated here from the Philippines. My uncle, who is a great artist, was very influenced by Mr. Terry and he even went on to become a toy designer. My family tells great stories about him.”

Top Ten Good Things About Chemo

2008-12-01T15:04:00.011-05:00

From the home office in Newton, Massachusetts:

10. Annual savings in haircuts (@ $22/month) and shampoo (one bottle went a LONG way with me anyway).

9. Free Wi-Fi allows me to watch tons of junky tv shows on Hulu.

8. Drowsiness caused by Benedryl drip compensates for giving up Guinness for the next year.

7. "What are you in for?" conversations with cell mates...err, fellow patients.

6. Blood pressure checks every quarter hour fill my narcissistic need for attention.

5. Hearing about nurse's cats and Thanksgiving dinner.

4. Get out of emptying trash for next year.

3. Oncologist's office now accepts Starbuck's card.

2. Great "Go Steve, Go" emails from friends and stalkers.

1. Three words: Goodbye Back Hair.

Kathleen's post from Day 1

2008-12-01T13:12:00.001-05:00

Day 1: So, here I am sitting next to Steve in Dr Wisch’s office; he is cracking jokes with the nurses and other patients. In true Yazbak form, I found a small hole-in-the-wall Greek place in Newton Lower Falls that carries lemon soup. This morning wasn’t so great for me; there is a fair amount of anger that goes along with having this intruder in our lives. But all in all, I think we’re doing OK.

It’s 1pm and Steve is having only minor allergic reactions to the Rituxan he is receiving. This is actually an immuno-therapy drug, and the chemo comes tomorrow. For the record, he did sing the theme to "Mighty Mouse"

Last night I spoke with my cousin, Bryan, who lives in Princeton, NJ, and has been battling Multiple Myeloma (another lymphoma) for 8 years. As I emailed with his wife, JoEllen, this morning, that anyone I love has to face any of this is the piece with which I won’t make peace. They are amazing people, and an amazing couple I love and have admired for so long. Bryan was pretty categorical on a number of fronts, and it felt great to hear him tell me we’re going to survive this.

As well, Bryan and JoEllen have mastered the germ-a-way thing, so I am now their most serious pupil. Believe me, once you start thinking about germs, it’s easy to see how OCD happens. Not that I had any OCD tendencies to start with… ;)

More later...

Mighty Mice, Telly Savalas, and More

2008-11-30T18:50:00.006-05:00

Hello everyone:

I'm sitting in the basement with Kathleen and Lucy (the dog), watching "On Her Majesty's Secret Service" and getting myself ready for the start of chemo tomorrow. The dog always preferred George Lazenby's Bond to Connery or the others. You'll have to ask her why.

Thanks to all of you who sent me emails or voice mails as we got ready to talk to the boys about all of this. The bottom line is that they did fine, all things considered. I met with my guys this morning along with their mom and the talk went well. We focused the conversation on what they need to know right now, which is that I have this disease but that we also have a solid plan of attack. I reminded them of famous and not so famous people we knew who have successfully beaten cancer. This is just one conversation in what is likely to be an ongoing series. They're concerned, and there will certainly be other conversations during the rough days we'll go through to get to the other side of this. But there will be another side, and that was the main message. The boys' mom has been extremely generous and supportive through this, for which I'm very grateful.

Kathleen also sat down with her boys, Lucas and Theo, to share the news today. They wre quite supportive, and I know that they'll do whatever they can to help us get through this.

I'll be honest and say that getting the "mediport" put in my chest on Friday was not fun and still hurts like a son of a bitch. That said, I can now say that I have four nipples. How many other bipeds can tell you that? The discomfort was a sobering reminder that regardless of my attempts at false bravado and compartmentalization, this disease is going to extract its pound of flesh from me before I'm rid of it. I have this odd sense that as we have become increasingly aware of the intruder's presence, it is shedding its stealthy ways. We're about to have war out in the open, without the cold war subterfuge of the last few months (ok, maybe that image came from watching Lazenby foil Telly Savalas on the TV)...

So tomorrow, I start my chemo with a 5-hour dose of Rituxan, which is derived from mouse proteins and attacks the outer lining of the lymphoma cells. At 9:40 a.m., I'll be singing the theme to Mighty Mouse ("Here I come to save the day..."). If you want to sing along with me, you know, as a sign of solidarity with super hero rodents the world over, not to mention solidarity with yours truly, that would be most welcome.

Hugs,

Steve

Thanksgiving and the quote...

2008-11-27T18:11:00.003-05:00

Happy Thanksgiving! We are stuffed like pigs at Christmas, or is it turkeys at Thanksgiving? Castle Hill - and all of you who got us there (you know who you are!) - spoiled us rotten today... We overlooked Newport Harbor holding hands, grateful to be together, so surrounded and so supported as we head into this chemo/immuno marathon. We managed not to think about "stuff" for a few hours... OH, and last night's sunset in Newport was so incredible - and so special.

I remarked to Steve that after our all-day meetings at MGH on Tuesday and Wednesday's trip to Dr Wisch's, I realized how skewed my view of the medical profession had become. I never ever had such an authoritative, competent and confident team describe to me in a holistic way what was going on with Theo which is why I had to become the autism project manager.

I do have a fair amount of understanding now of mantle cell lymphoma - but let's just say I'm leaving the hematology to the specialists.

In this surreal, science fiction story (which I still wish would go away, alas...) we have many strong prayers of Thanksgiving that we live where we live, know who we know, are in the care of these amazing folks, have good insurance, etc . So, yeah, it's utterly weird, random and rare but we have a PLAN that has been tested. I love those Nordics with their icy blue hearts too.

Anyway, the important thing is that Steve and I are ready to rock and roll. And on the tough days I will heed the advice which is etched onto the great new mug that my dear friend Janet gave me: "I'll have a caffe mocha vodka valium latte to go, please!"

11/25/08 Update

2008-11-27T17:48:00.001-05:00

Dear friends & family: On the verge of Thanksgiving, we have so much for which to give thanks. That’s true every year, but after today’s visit to the Cancer Center at Massachusetts General Hospital, I think that this is true in spades. We met with Dr. Ephraim Hochberg, who with that name was destined to be a doctor or an undertaker. I guess he split the difference and became an oncologist. OK, that might have been a little dark, even for me, but there’s nothing like a visit to one of the bigger cancer centers in the US to give you a healthy dose of darkness.
But, seriously, folks…Dr. Hochberg gave us a thorough explanation of lymphoma, mantle cell in particular, and the amazing genetics of our immune system. I won’t embarrass myself by trying to reproduce his explanation because I know I have two doctors, a nurse practitioner, and a semi-professional medical sleuth (my wife) in this distribution list. Suffice it to say that we all have the ability to create mutant cells as our immune systems battle intruders and it is this very capacity for mutation that can save us or sicken us. Whether it’s lousy luck, bad genes (not a reference to my brother-in-law, of course) or the environment (microwaveable hot pockets), who knows? After all is said and done, this is where I am, and how I got here is not particularly interesting at the moment. I’m much more interested in how the hell we get out of here.
And that’s what was so encouraging about today. As you’ll see by reading the article, “Intensive Regimen May be Curative in Mantle Cell Lymphoma,” if I had gotten this diagnosis a year or two ago, it might have amounted to a death sentence within three to five years. The most likely interventions would either get me to remission, only to see the lymphoma return quickly and more aggressively or give me leukemia in the process of “curing” the lymphoma.
A new treatment regime called the Nordic study offers the first real hope of long-term survival for mantle cell lymphoma. I agree with one of the people interviewed in the article that calling this a cure is a bit of a reach and I would never want to jinx myself with a word like that anyway. I know that my life is changed forever by this disease. I will carry its scars and I will also carry a deeper appreciation for my own mortality. But I also expect to carry lessons for my sons about the power of courage, perseverance, positive thinking, intensive exercise, and warped humor.
The next nine months are going to be a hell of a ride for all of us, and your support of Kathleen and me as we climb two very tough mountains will be essential and cherished. You already have a sense of what the next 18 weeks hold—chemo every three weeks for 18 weeks, with three hospital stays as part of the administration of the drugs. I’ll lose my hair, but evidently there is no guarantee that I’ll lose the hair on my back, so I may still have to get that wax job I’ve been saving up for. I will also have to give up Guinness for a wee bit, so I did drop by the liquor store today to give the owner a hug because I know he’ll miss me. The good news is that it appears that I will be able to see my boys regularly and go to work through much of this period, provided that we’re hypervigilant about avoiding infection through the sort of germaphobe practices that have made Donald Trump beloved the world over.
As we’ve known already, the chemo will be aggressive and tough and there are risks that cannot be taken lightly. That said, the second hill will be much steeper and riskier than the first. We met in the afternoon with Dr. Thomas Spitzer, the head of the Bone Marrow Transplant Center at MGH and no relation whatsoever to Elliott nor a regular customer of the Empire Escort Service. The stem cell marrow rescue, as it’s called, involves harvesting my marrow stem cells at the end of the 18-week chemo cycle (probably about two to four weeks after the last treatment). After the stem cells are harvested and frozen, I will be admitted to MGH for at least three weeks. They will bombard me with one final mega-dose of chemo, designed to blast out any remaining lymphoma. At this point, I will basically have no immune system and will be living in a hermetically sealed hospital room that I like to think of as the medical equivalent of Michael Jackson’s house. After about 10 days, they will reinsert the stem cells, which are essentially the “seeds” of my new, improved immune system. They’ll be watching me intensively over the next stretch to ensure that my blood cell and platelet counts are coming back. Once those counts come up, I’ll be on my way to release from the hospital.
I will get on a first-name basis with the radiology team at Newton Wellesley Hospital and will be getting CT and PET scans for a long time to come. To think that a guy who has been deathly afraid of needles would end up becoming such a pro at IVs and barium milkshakes (I prefer the banana flavor to the berry. How about you?)…
As scary and risky as all of this is, I feel more genuinely optimistic tonight than I have since this entire insanity began back in September. There are no guarantees and plenty could go horribly wrong. But isn’t that true for all of us, in one way or another? All I can ask is to be given a set of weapons and a chance for a fair fight. I feel like those Vikings who ran the Nordic study have given me exactly that, bless their icy blue hearts.
OK, this has gotten to be another one of those long missives for which I’m famous. At least my poetry is concise. I thank you all for cheering me on through all of this. It means the world to me, and I’m looking forward to hoisting a Guinness with all of you come the fall.
Love,
Steve

A Big Hill To Climb (11/19/08)

2008-11-27T17:23:00.000-05:00

Hi there: I’m sorry for using email to tell you about this, but as you’ll read below, this is an emotionally challenging time I’m going through, and I’ve found it less trying to send out these updates by email. You can definitely call me about it on my cell; if it’s a bad time for me, I will let it go to voice mail. The bottom line is that over the past month, I’ve been getting some increasingly grim indications about my health, starting with the discovery of abnormally enlarged lymph nodes in my neck in September, a couple of CAT scans, and a biopsy, we now know that I have lymphoma. Here are the headlines:

1) I have a rare form of non-Hodgkin’s lymphoma called mantle cell lymphoma. It only affects about 3,000 Americans, so you now have medical confirmation of how very special I am. My recommendation is that you do NOT get off this email and Google mantle cell lymphoma, because you’re likely to see some info out of context and get freaked out.

2) On Friday, I had more blood work done, a physical exam, and most entertaining of all, a bone marrow sample taken from my pelvis. On Monday, I had a PET scan and EKG. All of those tests let my doctors know two things. First, my lymphoma is stage 4, meaning that it has affected my entire lymphatic system from neck to groin and that it is also in my bone marrow. Second, the PET scan let them know how the cancer cells processed nutrients, and the good news is that the cells reacted the way they expected, meaning that they will be able to trace my response to chemo and the effectiveness of the treatment.

3) I have a wonderful doctor named Jeffrey Wisch, who is the head of oncology at Newton Wellesley hospital, a fellow at Dana Farber, and most importantly, an expert on treating mantle cell. He’s done this before, and as he emphasized to me, patients have gone through treatment with this and gotten better. Dr. Wisch will be coordinating my care with the world-leading oncology team at Mass General.

4) That encouraging news aside, I will tell you that this is not a run of the mill lymphoma and the treatment will not be run of the mill either. The chemo will be aggressive, with the goal of getting me into remission as soon as possible. What is encouraging is that I am not currently symptomatic and am in excellent physical shape, if I do say so myself. That makes my prognosis much more encouraging than would otherwise be the case.

5) When I successfully get to remission, I will be looking at a stem cell transplant to allow my bone marrow to regenerate and for my immune system to work again. In all likelihood, they will use a new method that involves harvesting my own stem cells, cleaning them of the lymphoma, and transplanting them back. That’s several hurdles down the road however, so I would prefer to focus on the battle at hand, which is ridding my body of lymphoma and getting to remission.

6) I will be starting chemo the Monday after Thanksgiving. While a few details are still to be worked out, it looks like I will be getting a day of chemo every three weeks for six cycles, meaning that the therapy will last 18 weeks. Three of the treatments, including the first one, will be out-patient treatments at my oncologist’s office in Wellesley. The other three will involve 48-hour hospital stays because the treatments will be taken at precise 12-hour intervals.

7) “Life is what happens while you’re busy making plans,” John Lennon wisely observed. More than anything else, my ability to make plans and commitments through this period will be pretty limited, to say the least. I’m hoping to be able to work in between treatments, although how much of that will be at my office versus working remotely will depend both on my own strength and on my doctors’ assessment of my ability to fight off infections. I will take the good advice of many of who have gone before me and listen to my body and put my health first. I will also take the advice of Dr. Wisch, who reminded me today that I should not live my life in a bubble, that I should not let cancer own me.

8) I’m lucky in more ways than I can begin to elucidate here, but let me cite a big one: I have an incredibly talented and caring wife, Kathleen Yazbak, who has already walked across hot coals to share a life with me and is now turning all of her talents for Lebanese networking and professional recruiter research to helping me fight this battle together with her. We found Dr. Wisch as well as Dr. Morton Kahan, the wonderful surgeon who performed the biopsy, through my father-in-law, Fouad Yazbak’s Lebanese/Egyptian Medical Mafia, which is based out of (where else?) Rhode Island.

9) I will be talking to my sons, Roddy (13) and Louis (11), the Sunday after Thanksgiving. If you are part of my Arlington network, please do not share this news with anyone in Arlington until after I’ve had a chance to talk with them. I’m grateful to the boys’ mom, Maria Gonzalez, for the support and flexibility that she’s offered me. We’ve done a good job of co-parenting after a difficult separation and divorce, and I know we’ll both support our boys through this new set of challenges.

As I suspect you’ll be quite upset if you’ve read this far, let me assure you that I’m doing just fine. I’m sitting in my favorite comfy chair with a blanket and my dog Lucy next to me, catching up on email and listening to NPR. Despite being literally radioactive on Monday so I could do the PET scan, I felt well enough to bike 21 miles that afternoon and another 20 miles this morning, and it felt great. I’m determined not to act sick until my body tells me to. Don’t cry for me, Argentina. I’m going to beat the shit out of this thing, even if it gives me a pretty good beating in the process.

I never wanted to prove myself this strong, but here I am. Reminds me of a variation on that old Groucho Marx line that I was thinking of while sitting with all of the poor souls in the waiting room at the oncologist’s Friday—“I don’t want to belong to any organization that would have me as a member.” So here I am a member of an exclusive club that no one wants to join, but once you’re in it, you only want to reach out and help the other members of the club, to crack a joke to a nurse and hear an old lady with a walker giggle when she overhears me. What else are you going to do? You can’t quit the club.

The best thing you can do is keep rooting for me while I deal with this stuff. Being who I am, I’ve set up a blog that I will share with family and friends about how I’m doing emotionally through all of this. May not be your cup of tea, but it’s called Poetry of Strong Living. Maybe it will help some others going through this someday…On a lighter note, if you’re on Facebook, you can join the group my brother set up for me, “Make Steve Pee His Pants,” in which various friends and family attempt to make me laugh hard enough to…well, you get the idea.

You may feel free to share this email with others so they know what’s going on. Let me tell you again that I am going to be strong through this, because I have a lot to live for and a lot to still give this world. I feel the love and prayers of my friends and family every day, and I ask you to keep them coming, maybe with FedEx thrown into the bargain.

Best,

Steve