Thursday, May 31, 2007

Could Jesse's leukemia have origins in the WTC disaster?

We lived close enough to the site that when the planes hit, I stood on our avenue and watched our national nightmare begin. Jesse was stuck in the Bronx that night, staying with friends from school, but over the months afterward we were all experiencing smoke and dust in the house, on the street, everywhere. The Armory right near us was a base for the responders. My younger son wore a face mask every day until the fires had died down, but I don't think Jesse did, especially after the first few days. I don't know how close he ever went to the site, I don't even know if he ever went down and volunteered. It'd be just like him to do that and never let on to anyone what he'd done to help.

If what Mt. Sinai suspects is true, and more and more people are going to be contracting plasma cell cancers, including APL, then New York and New Jersey need to know the symptoms of leukemia so they can get early treatment. Our doctors in Chicago called it the "good" cancer because there is a cure. The hitch is, if you don't catch it in the first week or so, you die of it. Jesse first noticed possible symptoms of a relapse around January 9th. He didn't go to the hospital until January 16th. Could that week have saved his life? I'll never know, but you can bet that I'm going to find a way to make sure Jesse's story saves someone else's life if that's at all possible.

Third wave of ills from WTC seen
Mount Sinai docs fear new cancers
Thursday, May 31st 2007, 4:00 AM

Responders to the 9/11 terror attacks could face a devastating "third wave" of illnesses - blood and lymphatic cancers - related to their exposure to Ground Zero air, says the director of the largest treatment program for those workers.
Though many scientists have cautioned that it's too soon to link cancers to toxins at the site, doctors at Mount Sinai's World Trade Center medical monitoring program are now seeing surprising cases of plasma-cell cancers in people who were there, said Dr. Robin Herbert.
"We know we have a handful of cases of multiple myeloma in very young individuals, and multiple myeloma is a condition that almost always presents later in life, so that's the kind of odd, unusual and troubling finding that we're seeing already," Herbert said in an online audio interview in advance of today's issue of the New England Journal of Medicine.
Doctors at Mount Sinai are trying to verify cases of leukemia and lymphoma reported by any of the more than 20,000 responders they've examined, she said.
More than 120 people with those cancers are part of a class-action lawsuit alleging negligence by the city and its contractors at Ground Zero, said lawyer David Worby.
"People are afraid of the C-word, cancer. It's taken hundreds of people getting sick this way for Mount Sinai to say, 'We are more than concerned,'" Worby said. "Washington and Mount Sinai should draw up an entire platform of blood tests and precancer tests."
Herbert was unavailable for an interview, but in the Journal she described three waves of post-9/11 illnesses.
The first was the stubborn, dry "World Trade Center cough" stemming from pulverized cement there and seen in the months just after the disaster.
The second wave involves chronic respiratory diseases that cause lung inflammation and scarring.
Cancers could be the third wave among responders exposed to asbestos, dioxins and other carcinogens at Ground Zero, Herbert said.
Although the "full range" of those toxins will never be known, "you really worry when you have a mix of chemicals about the possibility of [a] synergistic effect," she said.

Wednesday, May 30, 2007

That dream we all dread.

Well, maybe you don't know to dread it yet. I fell asleep briefly in front of the tv and dreamed that none of this had happened. In the dream, I thought for a moment, that Jesse was dead, and then laughed at myself for my silly fears. Then I woke up, staring at the urn of his ashes.

Friday, May 11, 2007

Happy Birthday, Jesse

This would be Jesse's 23rd birthday. I toyed with the idea of baking a cake, but what? Jesse's been so detached since he came back last May, that I have no idea what kind of cake he wanted. Maybe the one my dad liked (they were both born under the same astrological sign, shared the intelligence, cynical optimism, and cussed stubbornness. Different senses of humor. They both died young. They both died in front of me: dad with me pounding on his heart and blowing breath into him, Jesse with me holding his foot from the other side of the hospital curtain while the staff pulled his respirator tube. Jesse's heart kept beating, though he never took a breath. No death rattle. Dad's face turned grey every time I stopped one part of CPR to start another.

I'd rather think about Jesse's birth: at this point I'd been in labor for 31 hours. We had him at home, with no painkillers. I remember laying in bed between contractions, looking at the baby on a box of diapers nearby and thinking, I can endure this for you. And I did. But now? This?

I tell myself that it isn't really unfair. It's the human condition, and everyone goes through these horrible things in one form or another. In the living room that used to be part of Jesse's apartment in our loft, I stand in front of the urn and photos of him, and I ask him (I know, crazy. I'm crazy) do you like the new rug? And in my head he says, mock disdainfully, "It has a lot of big leaves." And I say, isn't there anything you like? And he says, "Jack Bauer," and laughs a little.

And then I remember, he always liked Phish Food ice cream.

If you'd like some, come by the loft tonight. There's beer and soft drinks too.

Monday, May 7, 2007

Photos of your smile

We've been finding pictures here and there, in your stuff. Pictures of your friends, of you, even pictures of us. I feel relieved that you've saved those, as if to say, perhaps, that you still loved us and all this distance was just something you were working through. In all these pictures you're smiling, sometimes a half a grin, sometimes a full throttle beaming face full of happiness. One shot, of you with Lisa, you're looking at me with that happiness. I remember that night, and how close and sweet it felt for all of us-- you were 20. Almost 21. You had survived the first round of leukemia, and we all thought you would live forever. How can all of you be gone?

Right after the World Trade Center went down, we were living near the armory where people had begun posting photos of their lost loved ones: "Have you seen so and so?" and a picture, almost always of someone smiling, often with a group of friends, family-- and it hit me over and over, that each of these photos had been taken by someone who loved that person, whom that person was smiling at-- that the photos weren't just a record of that person's face but of their relationship to the unseen person behind the camera. I cried every day on my way to work as I passed them. Now, I cry on my way to work, talking under my breath to you, to you.