Monday, March 16, 2009

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 13th, 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 1st.
  • 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 13th through May 1st 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 1st, 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.

Sunday, March 8, 2009


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


Please forward this to others, as you see appropriate.

Thank you