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.