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.

Being Bald Brings Big Bucks!

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

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

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

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

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

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

Valentine's Match

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

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

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

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

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

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

Steve's morning humor

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

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

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

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

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

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

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

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

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