Lucky

Hi everyone: I owe you a long posting after a long silence. And that's part of the problem, I've been putting off this post for so long because (a) there's so much to say and I don't quite know where to start and (b) I have an almost superstitious aversion to celebrating too much for fear of jinxing it.

I went in for my weekly oil change and tire rotation with Dr. Spitzer and the pit crew at MGH's Bone Marrow Transplant center today. My white blood cell count has continued it's steady climb from 3.7 at the beginning of the month to 5.6 today, well out of the neutropenic zone that I was in coming out of transplant. All food restrictions were lifted last week, and I'm down to just three pills a day now, not the 10 to 15 that were part of my routine over the last few months. Today, I was given the green light to return to work on Monday.

I'm coming back ONE MONTH ahead of schedule. When I told Dr. Spitzer that I'd biked 105 miles and run 8 in the past week, he shook his head and said, "That's just unprecedented."

I know and appreciate how lucky I've been through all of this, particularly this last stretch since going into MGH to have my stem cells harvested at the end of March. At every turn, I've exceeded the doctors' expectations. Blame it on me being ultra-competitive, credit it to me being in good shape going into this, or, my preference, recognize that this is a cruel and capricious disease that I've been fighting, and I have been damned lucky to get the better of it.

Wayman Tisdale was not so lucky. The former college and Olympic basketball great died of bone cancer two weeks ago at 44, with a great attitude and in great shape. I opened my alma mater's alumni magazine last week to discover that a member of this year's senior class was not so lucky, dying just three weeks after being diagnosed with leukemia. Kat Eckman was an extraordinary young woman who gave the world a life's worth of blessings in 21 years.

I know it won't surprise you that I read Lance Armstrong's It's Not About The Bike cover-to-cover in about two days back when it came out. It may surprise you that from diagnosis until tonight, I've been unable to take that book down and crack it open. Nor could I read any of the other cancer books out there or wade onto the cancer blogs and read the stories of other fighters like me. Partially, it was just too painful to read other people's accounts, because somehow they made me admit how terrifying all of this was. If I only wrote and read my own story, it could be anything I decided it would be, and you know, I decided it was mostly going to be funny.

But I did pull down Lance's book tonight, because there was a quote in there that stuck with me as I heard people tell me that I got through this because of my attitude and my strength and my fitness:

Good, strong people get cancer, and they do all the right things to beat it, and they still die. That is the essential truth you learn. People die. And after you learn it, all other matters seem irrelevant. They just seem small.

Armstrong went on to write:

I don't know why I'm still alive. I can only guess. I have a tough constitution, and my profession taught me how to compete against long odds and obstacles. I like to train hard and I like to race hard. That helped. It was a good start, but it certainly wasn't the determining factor. I can't help feeling that my survival was more a matter of blind luck.

I'm glad I had a good attitude and that I made the people around me laugh with me. And I'm glad that I willed myself to get on the bike even on days when I felt like crap and could only spin at low resistance while I watched Sport Center. Did it help me get to the other side in such great shape? Like Lance, I doubt it. But what I do know is that the attitude let me get through this more on my terms than on cancer's terms, and that made all the difference.

I'm by no means out of the woods with this, and I will never use words like survivor or cure. One doesn't survive life; one lives it, and cancer is part of my life now. I have to say that returning to life after battling death is an entirely new sort of challenge. I have some sense of what it must feel like for soldiers returning to peacetime society after war. Perhaps there will be something worth saying about all of that. We'll see how much more blogging I have in me over the next few months. In the meantime, there's a lawn to be mowed, a nonprofit organization to be led, and a few new bike routes to try out.

Dear all, It's so nice to have Steve home! We got back to the house around 9:30 pm on Thursday night, after Steve gave a great speech to 250+ people at the Youth Advocacy Project gala, via webcam (It's a little scary that I was responsible for the technology set up; am proud to say that it worked!)

Wanted to share a photo of that evening, below, and one from today, right - in true Steve form, he biked 16 miles in the basement, and I took a nap.

Given the outfits, I think I'm going to propose to the Lance Armstrong Foundation that they take him on as a model for their apparel.

We saw Dr. Spitzer today, who was very pleased with both Steve's mental and physical state. He mentioned that the folks on Ellison 14 really miss him, that they've rarely had so many laughs with a transplant patient.

His counts are inching up, the precautions are still quite stringent, but after IVs and isolation, hand-washing and clorox seem like a really easy deal...

Big hugs to all, and thank you for the prayers and thoughts - it is our hope and prayer that you all enjoy health, and that we can start socializing soon... we've decided that "boring and middle aged" is a fine goal!

Kathleen

Top 10 Good Things About BMT Isolation

Hi again everyone. Can't tell you what day of splendid isolation we're in because I refuse to count them off right now. I'll do that when I get out. For right now, I'm living in the moment, structuring each day around reading good books, replying to all of your lovely emails, watching some shows on Hulu.com and riding the in-room exercise bike while looking out at the Longfellow Bridge and beyond..

Since our Top 10 Isolation Movies was such a hit (I'll announce the winner soon), I thought I'd offer a companion to the Top 10 Good Things About Chemo that I posted back in December. To wit, the top 10 good things about isolation for bone marrow transplants.

From the Home Office in Boston's West End:

10. My own version of the Slimfast diet: an egg for breakfast, a strawberry shake for lunch and a cappuccino shake for dinner.

9. Ability to provide friends with live, up-to-the minute traffic updates for the Red Line, Storrow Drive, Memorial Drive and the upper deck of I-93.

8. Discovering that I can spend hours imagining the potential medical purpose of devices attached to the ceiling.









7. The thrill of deciding each morning which pair of Adidas track pants to wear—white, blue, black, blue/orange—and select a shirt that truly does them justice.

6. Opportunity to improve my soccer coaching skills by critiquing 8v8 and 6v6 games taking place 14 stories below. Bottom line: Roddy's team could crush any of them.

5. Morning Skype video calls with my brother remind me just how much worse I would look if I were covered in hair.







4. Shifting nurse assignments allow me to rework same tired material and get laughs anew, from people who are paid to humor me.

3. Safety precautions for visitors mean that I can imagine what it would be like to live in a place that required veils on men and women.







2. Charting daily fluid intake and urine output opens up a whole new world of opportunity for the obsessive compulsive in me.

1. Major Life Lesson: Duckboats are the only recession-proof business in Boston.

TOP TEN MOVIES ABOUT ISOLATION

Dear friends,

It wasn't such a fun weekend for Steve on Ellison 14... he literally has "ZERO" white cells and neutrophils (thus, NO protection from any infection). He's not hungry, and he has alot of discomfort in his mouth/throat from the chemo fallout. As always, he is amazingly focused and looking on the bright side.

So, on a fun note, we thought we'd launch a competition... We're compiling a very important list, of the TOP TEN MOVIES ABOUT ISOLATION. We need your movie ideas, and to get things kicked off, here are a few we brainstormed yesterday, via Skype, with Steve's brother George and our sister in-law Sydney:

"Inside Man"

"Waiting for Godot"

"Count of Monte Cristo"

"Castaway"

Place your votes! We want to hear from you! The wittiest and funnest movie ideas will be celebrated in a special way, so don't hold back!

Hugs
Kath

Our "Community"

Some people today are a wee bit complacent until something jumps up and bites them.
—a Roanoke city councilor quoted in Bowling Alone.

As I sit up here on the 14th floor in my splendid isolation, I've had a fair amount of time to contemplate the nature of human connections and community, the emphemeral and the permanent, the accidental and the designed.

I'm certainly not the first to cover this ground. Robert Putnam's seminal Bowling Alone used the demise of bridge clubs and bowling leagues as a metaphor for the unraveling of community connections as Americans' sense of place succumbed to suburbanization and migration. Putnam's work spawned a coterie of academics and activists devoted to experiments in rebuilding "social capital" in communities.

While I certainly saw something noble in the idea of reforming community glue groups like Elks Clubs and Garden Societies, there always seemed something archaic and quixotic about this approach. We live our lives now in cities and towns we hardly recognize, even if we grew up in them. Ad hoc communities are formed at offices, youth soccer sidelines, and "networking" events. People pass into our lives and touch us or we touch them, but rarely are those bonds more than fleeting. We will update each other with Christmas cards, "friend" one another on Facebook, and if you're as good a person as my wife is, you will call regularly.

Here in Boston, The Barr Foundation funded several ambitious efforts to map out these informal social networks and learn how they formed, reformed and sustained themselves. I won't try to summarize all that was learned in these efforts and what it tells us about how adaptive, organic networks might change the way we live. As Barr was studying all of this, we saw the emergence of forces that will, shortly, bring us back to the subject at hand (I promise).

Howard Dean is unfortunately remembered for one ill-advised scream and less for a radically new organizing model that was adapted by Deval Patrick in his race for governor here in Massachusetts and then perfected by Barack Obama. Most political races are about politicians much more than ideas, and the press does little to upset this maxim. Dean and his advisors used the Internet to mobilize and connect a group of people with a vaguely shared idea (that the Iraq war had to end). Once connected, this activist network took on a life of its own.

That said, these networks are not easily manipulated, the way Tammany Hall might have moved its network. I remember after he pulled out, Dean saying that he would put his network at Kerry's disposal in the general election. We know how that turned out. The network had formed to oppose a war, not elect a politician, and enough people in that network distrusted Kerry's sincerity to make it a neutral factor, as much as they despised Bush.

During the campaign for governor here and the presidential election, much was made of the movement that had been created, the number of people who had been moved to act, to give of their time and money, to build a better state or country. After the elections, earnest commissions were formed to discuss how to mobilize this ad hoc community once again in the act of building something better.

Here in Massachusetts, little evidence of the 50,000-strong network Deval Patrick built remains, nor do I see a grassroots network backing Obama more than tacitly. It's obviously easier to rise up to do battle than it is to rise up and do something that truly changes anything.

In my trademark meandering way, this all takes me back to this blog and the community we've built. I've been moved in myriad forms by the connections I've been able to make through this to people I sort of knew, people who sort of knew me, and people who didn't really know me at all before this all started. I got an email late last night from one of these friends, expressing how my latest poem had touched him. Someone else emailed me today with ponderings on the pursuit of self-knowledge. And a sister of a friend emailed me from Louisville a few days ago to thank me for the "In Treatment" recommendation.

As I awoke this morning, I thought about what an unexpected gift it has been to reveal myself to others and in the process, have so many others reveal themselves to me. I've certainly questioned my own motives at times, but the reality is that it has been so much easier to walk through this with all of you than it would have been alone.

What I wonder now is to what purpose we turn this? I do not mean forming a club or a movement or even a Facebook group. Some of you are becoming first-time platelet donors in my honor. Others may have a different conversation with their partner than they've had in some time because of what this journey suggests about our shared mortality. What I do know is that none of us will be the same for the connections we're forging with each other, and I have to believe that some higher purpose may well be served if we dare hold on to those connections through the static that will surely return to my life as it does yours.

Phil, Bill, Steve and DAY ZERO

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

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...

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

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

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

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

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

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

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

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

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

April: "I know I have cancer."

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

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

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

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

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

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

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

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

There Will Be Blood

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

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

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

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

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

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

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

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

GO, PHIL, GO

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

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

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.