Sunday, November 30, 2008

Mighty Mice, Telly Savalas, and More

Hello everyone:

I'm sitting in the basement with Kathleen and Lucy (the dog), watching "On Her Majesty's Secret Service" and getting myself ready for the start of chemo tomorrow. The dog always preferred George Lazenby's Bond to Connery or the others. You'll have to ask her why.

Thanks to all of you who sent me emails or voice mails as we got ready to talk to the boys about all of this. The bottom line is that they did fine, all things considered. I met with my guys this morning along with their mom and the talk went well. We focused the conversation on what they need to know right now, which is that I have this disease but that we also have a solid plan of attack. I reminded them of famous and not so famous people we knew who have successfully beaten cancer. This is just one conversation in what is likely to be an ongoing series. They're concerned, and there will certainly be other conversations during the rough days we'll go through to get to the other side of this. But there will be another side, and that was the main message. The boys' mom has been extremely generous and supportive through this, for which I'm very grateful.

Kathleen also sat down with her boys, Lucas and Theo, to share the news today. They wre quite supportive, and I know that they'll do whatever they can to help us get through this.

I'll be honest and say that getting the "mediport" put in my chest on Friday was not fun and still hurts like a son of a bitch. That said, I can now say that I have four nipples. How many other bipeds can tell you that? The discomfort was a sobering reminder that regardless of my attempts at false bravado and compartmentalization, this disease is going to extract its pound of flesh from me before I'm rid of it. I have this odd sense that as we have become increasingly aware of the intruder's presence, it is shedding its stealthy ways. We're about to have war out in the open, without the cold war subterfuge of the last few months (ok, maybe that image came from watching Lazenby foil Telly Savalas on the TV)...

So tomorrow, I start my chemo with a 5-hour dose of Rituxan, which is derived from mouse proteins and attacks the outer lining of the lymphoma cells. At 9:40 a.m., I'll be singing the theme to Mighty Mouse ("Here I come to save the day..."). If you want to sing along with me, you know, as a sign of solidarity with super hero rodents the world over, not to mention solidarity with yours truly, that would be most welcome.



Thursday, November 27, 2008

Thanksgiving and the quote...

Happy Thanksgiving! We are stuffed like pigs at Christmas, or is it turkeys at Thanksgiving? Castle Hill - and all of you who got us there (you know who you are!) - spoiled us rotten today... We overlooked Newport Harbor holding hands, grateful to be together, so surrounded and so supported as we head into this chemo/immuno marathon. We managed not to think about "stuff" for a few hours... OH, and last night's sunset in Newport was so incredible - and so special.

I remarked to Steve that after our all-day meetings at MGH on Tuesday and Wednesday's trip to Dr Wisch's, I realized how skewed my view of the medical profession had become. I never ever had such an authoritative, competent and confident team describe to me in a holistic way what was going on with Theo which is why I had to become the autism project manager.

I do have a fair amount of understanding now of mantle cell lymphoma - but let's just say I'm leaving the hematology to the specialists.

In this surreal, science fiction story (which I still wish would go away, alas...) we have many strong prayers of Thanksgiving that we live where we live, know who we know, are in the care of these amazing folks, have good insurance, etc . So, yeah, it's utterly weird, random and rare but we have a PLAN that has been tested. I love those Nordics with their icy blue hearts too.

Anyway, the important thing is that Steve and I are ready to rock and roll. And on the tough days I will heed the advice which is etched onto the great new mug that my dear friend Janet gave me: "I'll have a caffe mocha vodka valium latte to go, please!"

11/25/08 Update

Dear friends & family: On the verge of Thanksgiving, we have so much for which to give thanks. That’s true every year, but after today’s visit to the Cancer Center at Massachusetts General Hospital, I think that this is true in spades. We met with Dr. Ephraim Hochberg, who with that name was destined to be a doctor or an undertaker. I guess he split the difference and became an oncologist. OK, that might have been a little dark, even for me, but there’s nothing like a visit to one of the bigger cancer centers in the US to give you a healthy dose of darkness.
But, seriously, folks…Dr. Hochberg gave us a thorough explanation of lymphoma, mantle cell in particular, and the amazing genetics of our immune system. I won’t embarrass myself by trying to reproduce his explanation because I know I have two doctors, a nurse practitioner, and a semi-professional medical sleuth (my wife) in this distribution list. Suffice it to say that we all have the ability to create mutant cells as our immune systems battle intruders and it is this very capacity for mutation that can save us or sicken us. Whether it’s lousy luck, bad genes (not a reference to my brother-in-law, of course) or the environment (microwaveable hot pockets), who knows? After all is said and done, this is where I am, and how I got here is not particularly interesting at the moment. I’m much more interested in how the hell we get out of here.
And that’s what was so encouraging about today. As you’ll see by reading the article, “Intensive Regimen May be Curative in Mantle Cell Lymphoma,” if I had gotten this diagnosis a year or two ago, it might have amounted to a death sentence within three to five years. The most likely interventions would either get me to remission, only to see the lymphoma return quickly and more aggressively or give me leukemia in the process of “curing” the lymphoma.
A new treatment regime called the Nordic study offers the first real hope of long-term survival for mantle cell lymphoma. I agree with one of the people interviewed in the article that calling this a cure is a bit of a reach and I would never want to jinx myself with a word like that anyway. I know that my life is changed forever by this disease. I will carry its scars and I will also carry a deeper appreciation for my own mortality. But I also expect to carry lessons for my sons about the power of courage, perseverance, positive thinking, intensive exercise, and warped humor.
The next nine months are going to be a hell of a ride for all of us, and your support of Kathleen and me as we climb two very tough mountains will be essential and cherished. You already have a sense of what the next 18 weeks hold—chemo every three weeks for 18 weeks, with three hospital stays as part of the administration of the drugs. I’ll lose my hair, but evidently there is no guarantee that I’ll lose the hair on my back, so I may still have to get that wax job I’ve been saving up for. I will also have to give up Guinness for a wee bit, so I did drop by the liquor store today to give the owner a hug because I know he’ll miss me. The good news is that it appears that I will be able to see my boys regularly and go to work through much of this period, provided that we’re hypervigilant about avoiding infection through the sort of germaphobe practices that have made Donald Trump beloved the world over.
As we’ve known already, the chemo will be aggressive and tough and there are risks that cannot be taken lightly. That said, the second hill will be much steeper and riskier than the first. We met in the afternoon with Dr. Thomas Spitzer, the head of the Bone Marrow Transplant Center at MGH and no relation whatsoever to Elliott nor a regular customer of the Empire Escort Service. The stem cell marrow rescue, as it’s called, involves harvesting my marrow stem cells at the end of the 18-week chemo cycle (probably about two to four weeks after the last treatment). After the stem cells are harvested and frozen, I will be admitted to MGH for at least three weeks. They will bombard me with one final mega-dose of chemo, designed to blast out any remaining lymphoma. At this point, I will basically have no immune system and will be living in a hermetically sealed hospital room that I like to think of as the medical equivalent of Michael Jackson’s house. After about 10 days, they will reinsert the stem cells, which are essentially the “seeds” of my new, improved immune system. They’ll be watching me intensively over the next stretch to ensure that my blood cell and platelet counts are coming back. Once those counts come up, I’ll be on my way to release from the hospital.
I will get on a first-name basis with the radiology team at Newton Wellesley Hospital and will be getting CT and PET scans for a long time to come. To think that a guy who has been deathly afraid of needles would end up becoming such a pro at IVs and barium milkshakes (I prefer the banana flavor to the berry. How about you?)…
As scary and risky as all of this is, I feel more genuinely optimistic tonight than I have since this entire insanity began back in September. There are no guarantees and plenty could go horribly wrong. But isn’t that true for all of us, in one way or another? All I can ask is to be given a set of weapons and a chance for a fair fight. I feel like those Vikings who ran the Nordic study have given me exactly that, bless their icy blue hearts.
OK, this has gotten to be another one of those long missives for which I’m famous. At least my poetry is concise. I thank you all for cheering me on through all of this. It means the world to me, and I’m looking forward to hoisting a Guinness with all of you come the fall.

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.