Tuesday, July 10, 2007

the pieces are in place

Eileen and Su accompanied me to Dr. Castro-Malaspina's office yesterday for my follow-up appointment. At the appointment, we learned that the 9/10 unrelated adult donor was chosen to be my donor. It's the best available. The cord blood lines, which were identified earlier, weren't sufficient matches for a safe transplantation. Though my donor isn't a perfect match, it's the best there is. For a cure, it's this or nothing.

He said there's a 40% chance it will work . . . that I'll be cured. Dr. Moskowitz said about 33% chance at my appointment this afternoon. Not much difference really. It's about the same. Dr. Moskowitz told us that very recently one of his patients with Hodgkin's died after having failed an autologous transplant (I don't know why he didn't go for an allo), but he had lived four years post-transplant which is the longest he had ever seen. Most people (this includes those who receive more treatment and those who do not), he said, live about two years following a failed autologous transplant. But if there ever was an opportunity to go ahead with the transplant, the time is now. This time right now is the best moment to go forward, Dr. Moskowitz said. Moreover, he said that I'm the type of person (because of age, overall health, and in remission) who should have a great shot at a cure. I need to go into this thinking positively and hoping for the best, Dr. Castro-Malaspina told us. I must go thinking that all will be well though sometimes that can be very difficult.

The PET-CT scan, which I took last week, was negative thankfully just like the one taken about one month ago in Chicago. The CT showed scarring, which is normal considering my previous treatments but the PET, the important element here, revealed no uptake and therefore, no activity. That's a great thing, everyone has said. Ideally, one wants to be in remission before heading to transplant and I am, so that's positive.

It was very difficult to listen to the somber statistics of transplant success and discussing the frightening consequences of GVHD. Even a perfect match doesn't remove the risks of GVHD, Dr. Castro-Malaspina said. I broke down and cried twice during yesterday's appointment as I thought about the difficult, uncertain road ahead and my fear that these days now may be my last days of good health. It's difficult, very difficult no doubt, but this is the best shot that I have to live a long, normal life. Indeed, it has been difficult for us all: for my folks, Su, Clare and Eileen. No treatment, however, I was told will mean only a 5% chance of cure as opposed to 40% with the transplant. But that 40% means that there are indeed people who survive, live and move on and I just have to hope that I become one of them, a fortunate member of a elite group.

I'm scheduled to be admitted to the transplant ward of Sloan-Kettering on Friday, July 27th for a stay that is expected to last about four weeks. In the meantime, I have a lot to do. On Thursday, I see my hygienist for a cleaning and evaluation and then, I plan to attend the Stupid Cancer Happy Hour that evening downtown. The next day there's a pulmonary function test (PFT) at 10am and an echocardiogram at 11:30am. At 1:30, I'll see my therapist, Dr. Roberts.

Early Saturday morning Ben will pick me up and we'll head up to Osterville, MA to attend the wedding of our friend and Vassar classmate, Dimitri, that afternoon. Not knowing my schedule until yesterday, I didn't know if I'd be able to make the wedding but I will. I haven't seen Dimitri since graduation five years ago, so it will be a nice reunion. Also, I have visited Massachusetts only once and that was a day trip to Boston about two years ago, so it will be nice to see a different part of the state. We'll spend the night and return the next day.

I am scheduled to see Dr. Castro-Malaspina again on Monday, the 16th at 12:30. At 2:30, I'll have a bone marrow aspiration done. On the 19th, I see Dr. Joachim Yahalom, the radiation oncologist, for a consultation at 10am. And on July 23rd, I see Dr. Tomer Levin, a psychiatrist at Sloan specializing in transplant patients.

It will be difficult to make it out to Glacier National Park in the time that remains before the transplant. Glacier is a place that I've wanted to visit ever since I first learned about it several years ago and it's a place in which I'd want to spend at least a week. As my schedules stands, it wouldn't be possible to stay for so long. There's just too much happening. Round trip tickets for two people to Glacier are about $1,800. Though I'd love to go, the time isn't really there and I'd be spending a lot more money for a shorter stay than I'd really want under ideal circumstances. Consequently, I'm slowly relinquishing my hold on the idea of traveling to Montana though it hurts me. In place of Glacier, I've been thinking about Niagara Falls, the Adirondacks, or the Catskill Mountains (which are all other locales that I've placed on my mental list of places to visit, but Glacier is by far the foremost). Even to these destinations on such short notice, I need to hurry. Glacier will have to wait for another time. (I hope the glaciers will wait too.) Su described Glacier as a huge "carrot" or incentive for me to look forward to post treatment. Once healthy again, it will be my first vacation stop post-transplant.


Comment Blogger Tom (dB) said...

This sounds all too familiar with what I went through. I wish you all the best and will be thinking of you.

5:04 AM  
Comment Anonymous Emily said...

*hugs* love you! You're in my prayers:)

2:54 PM  
Comment Anonymous Anne said...

Hi Duane. I'm not online anymore - very rarely, but I wanted to send my good thoughts to you with lots of prayers your way. I know how you're feeling with your upcoming SCT because last summer, I had a syngeneic stem cell transplant. So far, 14 months in remission thank God and a recent negative PET scan. I wish you the same. Keep the faith and continue fighting until you beat this disease. My twin sister and I are rooting for you. God bless you.

11:33 PM  
Comment Blogger Duane said...

Thanks everyone.

9:39 AM  

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