Thursday, November 27, 2008

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.


Randy Meador said...

Your attitude and determination will serve you well, Steve. I was diagnosed in 2006 with Stage 4, Blastic MCL and have had 6 rounds of RCHOP, Auto SCT with BEAM, a Allo SCT with a donor that it was later determined had some problems, and finally another Allo with a young lady who was a 10 for 10 match. I am currently in remission but dealing with GVHD that started near the one year point. Life certainly changes when you get that diagnosis, but I think I have appreciated the last five years most of all. Good luck and never give up.
Randy Meador

SMP said...

Thanks. I'm very thankful that it's 2011 and not 2008 anymore!

Anonymous said...

Hi Steve -
You don't know me but I read your post on facebook via Hope for Lymphoma. 4.5 years ago I was diagnosed with 2 kinds of aggressive lymphoma (follicular and diffuse large B cell which was eating up my bone marrow). I did 6 rounds of R-CHOP and 2 years of Rituxan maintenance and got a strong and healthy 4-year remission. Now the aggressive lymphoma has returned and I am starting R-ICE chemo next Tuesday -likely 2-3 rounds followed by an auto SCT.

I'm blown away by what Ransdy posted - his journey gives us both hope for the weapons we will have to fight!

God bless you both - I will be thinking of you out here in Southern California!

Dianne Callahan