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

Dear Friends: As many of you know, 30 months ago, I received what I thought at the time was devastating news: I had cancer, specifically, mantle cell lymphoma, one of the rarest forms of the disease, with only 3,000 cases worldwide and fairly grim survival rates.  I wrote many of you an email with the news, aptly titled, “A Big Hill To Climb.”  Thanks to an innovative new treatment known as The Nordic Regime, an incredible medical team, a strong and loving wife, and all of you amazing friends, I am lucky enough to be writing you today.  I’ve been cancer free since mid-way through my seven rounds of chemo and bone marrow transplant.  I don’t use words like survivor, but don’t think I don’t thank my lucky stars every day that I wake up and think about getting on the bike to train instead of getting in the car to go to chemo or get another blood test or scan.

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

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

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

I’ll do the training.  I’d like to ask you to do one thing to help me out: Make a donation, of any amount, to support my ride.  You can give $5 or $50 or any amount that suits you, but please let me know that you’re right there with me as I climb 2,500 feet of hills that are still nothing compared to the hills I had to climb 30 months ago.

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

Thank you for all that you’ve done already to support me getting this far.  Anything you can give will help others like me and will help me make the most of the incredible gift that a second chance at life represents.

Best,

Steve

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

Pork CHOP Report

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!

Steve's Lamb CHOP Report

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

Top Ten Good Things About Chemo

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.