A Big Hill To Climb (11/19/08)

Hi there: I’m sorry for using email to tell you about this, but as you’ll read below, this is an emotionally challenging time I’m going through, and I’ve found it less trying to send out these updates by email. You can definitely call me about it on my cell; if it’s a bad time for me, I will let it go to voice mail. The bottom line is that over the past month, I’ve been getting some increasingly grim indications about my health, starting with the discovery of abnormally enlarged lymph nodes in my neck in September, a couple of CAT scans, and a biopsy, we now know that I have lymphoma. Here are the headlines:

1) I have a rare form of non-Hodgkin’s lymphoma called mantle cell lymphoma. It only affects about 3,000 Americans, so you now have medical confirmation of how very special I am. My recommendation is that you do NOT get off this email and Google mantle cell lymphoma, because you’re likely to see some info out of context and get freaked out.

2) On Friday, I had more blood work done, a physical exam, and most entertaining of all, a bone marrow sample taken from my pelvis. On Monday, I had a PET scan and EKG. All of those tests let my doctors know two things. First, my lymphoma is stage 4, meaning that it has affected my entire lymphatic system from neck to groin and that it is also in my bone marrow. Second, the PET scan let them know how the cancer cells processed nutrients, and the good news is that the cells reacted the way they expected, meaning that they will be able to trace my response to chemo and the effectiveness of the treatment.

3) I have a wonderful doctor named Jeffrey Wisch, who is the head of oncology at Newton Wellesley hospital, a fellow at Dana Farber, and most importantly, an expert on treating mantle cell. He’s done this before, and as he emphasized to me, patients have gone through treatment with this and gotten better. Dr. Wisch will be coordinating my care with the world-leading oncology team at Mass General.

4) That encouraging news aside, I will tell you that this is not a run of the mill lymphoma and the treatment will not be run of the mill either. The chemo will be aggressive, with the goal of getting me into remission as soon as possible. What is encouraging is that I am not currently symptomatic and am in excellent physical shape, if I do say so myself. That makes my prognosis much more encouraging than would otherwise be the case.

5) When I successfully get to remission, I will be looking at a stem cell transplant to allow my bone marrow to regenerate and for my immune system to work again. In all likelihood, they will use a new method that involves harvesting my own stem cells, cleaning them of the lymphoma, and transplanting them back. That’s several hurdles down the road however, so I would prefer to focus on the battle at hand, which is ridding my body of lymphoma and getting to remission.

6) I will be starting chemo the Monday after Thanksgiving. While a few details are still to be worked out, it looks like I will be getting a day of chemo every three weeks for six cycles, meaning that the therapy will last 18 weeks. Three of the treatments, including the first one, will be out-patient treatments at my oncologist’s office in Wellesley. The other three will involve 48-hour hospital stays because the treatments will be taken at precise 12-hour intervals.

7) “Life is what happens while you’re busy making plans,” John Lennon wisely observed. More than anything else, my ability to make plans and commitments through this period will be pretty limited, to say the least. I’m hoping to be able to work in between treatments, although how much of that will be at my office versus working remotely will depend both on my own strength and on my doctors’ assessment of my ability to fight off infections. I will take the good advice of many of who have gone before me and listen to my body and put my health first. I will also take the advice of Dr. Wisch, who reminded me today that I should not live my life in a bubble, that I should not let cancer own me.

8) I’m lucky in more ways than I can begin to elucidate here, but let me cite a big one: I have an incredibly talented and caring wife, Kathleen Yazbak, who has already walked across hot coals to share a life with me and is now turning all of her talents for Lebanese networking and professional recruiter research to helping me fight this battle together with her. We found Dr. Wisch as well as Dr. Morton Kahan, the wonderful surgeon who performed the biopsy, through my father-in-law, Fouad Yazbak’s Lebanese/Egyptian Medical Mafia, which is based out of (where else?) Rhode Island.

9) I will be talking to my sons, Roddy (13) and Louis (11), the Sunday after Thanksgiving. If you are part of my Arlington network, please do not share this news with anyone in Arlington until after I’ve had a chance to talk with them. I’m grateful to the boys’ mom, Maria Gonzalez, for the support and flexibility that she’s offered me. We’ve done a good job of co-parenting after a difficult separation and divorce, and I know we’ll both support our boys through this new set of challenges.

As I suspect you’ll be quite upset if you’ve read this far, let me assure you that I’m doing just fine. I’m sitting in my favorite comfy chair with a blanket and my dog Lucy next to me, catching up on email and listening to NPR. Despite being literally radioactive on Monday so I could do the PET scan, I felt well enough to bike 21 miles that afternoon and another 20 miles this morning, and it felt great. I’m determined not to act sick until my body tells me to. Don’t cry for me, Argentina. I’m going to beat the shit out of this thing, even if it gives me a pretty good beating in the process.

I never wanted to prove myself this strong, but here I am. Reminds me of a variation on that old Groucho Marx line that I was thinking of while sitting with all of the poor souls in the waiting room at the oncologist’s Friday—“I don’t want to belong to any organization that would have me as a member.” So here I am a member of an exclusive club that no one wants to join, but once you’re in it, you only want to reach out and help the other members of the club, to crack a joke to a nurse and hear an old lady with a walker giggle when she overhears me. What else are you going to do? You can’t quit the club.

The best thing you can do is keep rooting for me while I deal with this stuff. Being who I am, I’ve set up a blog that I will share with family and friends about how I’m doing emotionally through all of this. May not be your cup of tea, but it’s called Poetry of Strong Living. Maybe it will help some others going through this someday…On a lighter note, if you’re on Facebook, you can join the group my brother set up for me, “Make Steve Pee His Pants,” in which various friends and family attempt to make me laugh hard enough to…well, you get the idea.

You may feel free to share this email with others so they know what’s going on. Let me tell you again that I am going to be strong through this, because I have a lot to live for and a lot to still give this world. I feel the love and prayers of my friends and family every day, and I ask you to keep them coming, maybe with FedEx thrown into the bargain.

Best,

Steve