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