To John and Elizabeth Edwards, With Experience
[originally posted on Daily Kos on Thursday, March 22]
When cancer hits, you tell yourself a lot of things. I know this from experience: My wife was diagnosed with breast cancer in 1996, and then with a completely independent GIST tumor in 2003. She’s doing fine. She takes Gleevec, one of those targeted miracle drugs, and for Deb it has been more miraculous than for most people. Usually the cancer comes back in two years or so, but she’s at four years and counting.
Which brings me to John and Elizabeth Edwards.
Or maybe not quite yet. My role in the first cancer battle, other than just being the husband and keeping our friends informed, was to do all the background reading. Deb wanted to know what the best thinking was about attitude and visualization, how you should deal with your doctors, and so on. But she couldn’t stand to read the stuff, so I filtered it and told her what I thought she could use. I read a lot of accounts of people with cancer and how they handled it. A few of their insights were useful, but a lot of their stories were just depressing. I never told Deb about those.
One thing I learned was that it takes people a long time to come to grips with the reality of cancer. While Deb was in chemotherapy, a woman who worked for USA Today did a series describing her breast cancer diagnosis and treatment. Her cancer was further advanced than Deb’s, and I wasn’t convinced that Deb was going to make it. The USA Today women listened to her doctors’ plan-of-attack without objection. And then she realized that, as a side-effect, she’d never be able to bear children. That finally made it all real to her. That’s when she had to stop and ask if she really wanted to do this.
Reading USA Today in the waiting room, I thought (because the inside of my head is a very blunt, tactless place): “You idiot. Having children should be the last thing on your mind. You’ll be lucky if you’re not dead in two years.”
She was dead in two years.
Deb lived. Or (if past tense is inappropriate here), she’s still alive. That wasn’t really miraculous; it was more of a lucky throw of the dice. Maybe half or a quarter of the women in comparable situations lived. The second time was closer to the miracle end of the spectrum. The surgeon took something the size of a soccer ball out of her abdomen and didn’t think he got it all. He wasn’t sure what it was or whether it would be treatable at all. Turned out it was; that was the last we’ve seen of it. Four years now.
Now, maybe, it’s time to talk about Elizabeth Edwards. She was diagnosed the first time late in 2004. She got treatment, I’m not sure what kind, and now the cancer is back in a rib. That’s not unusual. When breast cancer spreads, it usually goes one of three places first: liver, lung, or bone. Deb’s mother’s breast cancer spread first to the liver, and then the lung. Edwards’ doctor noted that she has “very small” abnormalities on the lung that are “too small to say what’s going on in there.”
Later on, if it’s not stopped, it goes anywhere it wants. Ken Wilbur’s Grace and Grit tells the story of his wife’s breast cancer. It went to her brain finally, and that’s what killed her.
“We’re incredibly optimistic,” Elizabeth Edwards said today. John said that the doctors described it like diabetes, a condition that you live with but don’t cure. The campaign goes on. Elizabeth insisted it goes on. She’s talking about living “many years.”
Like I said at the beginning, you tell yourself a lot of things. Because we’re all supposed to be hopeful. Optimistic.
Count me as a dissenter against the religion of hope and optimism. What I’ve learned in the past 11 years – 15 if you go back to Deb’s mother’s cancer – is that hope and despair are two sides of the same coin. And you don’t want to flip that coin. You want to keep it in your pocket. Hope and despair both trap you in your head, and (just in case you don’t have a lot of life left), you don’t want to spend it in your head.
I find it amazing that the first sign of recurrence turned up Monday and the Edwards have already decided what to do. Maybe their minds really are that clear. But I’d have a better feeling right now if I knew they’d taken a vacation together for a week before they decided. Deb and I went away for a weekend the first time; it was a good idea.
Back in 1996, we knew what the score was: You get one shot at beating breast cancer. If it comes back, it kills you. Science has learned a lot about cancer in the last 11 years, but I don’t think that has changed. In the last decade I’ve seen a lot of headlines about exciting new treatments, but when you read deep into the articles you always find that people who used to die in 20 months get the treatment and live 24 months. Believe me, if it’s you or somebody you love, those four months are a godsend. But it’s not a revolution. We’re still not winning.
The impression you get from the Edwards press conference is that they’re not going to let this rock their boat. They’re going to keep sailing, and maybe they’ll sail into the White House.
But let me take a wild, unauthorized, irresponsible guess here. The reason the campaign goes on is that the White House is Elizabeth’s dream as much as John’s. And John can wait until 2012 or 2016, but she can’t. If she’s going to see President Edwards, it has to happen this time around.
I understand this thought process. There was a novel I started in 1999. It’s been on hold for several years now because other opportunities came up and crowded it out of my life. But if Deb had a recurrence, I’d be tempted to drop all the other stuff and finish it. Because otherwise she’d never read the ending. I’d always pictured her reading the ending.
So I think I get it. I think John imagines himself being sworn in on some wintery day in 2017, and he imagines himself thinking: “I wish Elizabeth could have seen this.”
But I hope they understand what they’re giving up. In late 96 and early 97 I wasn’t working. We had savings we could live off of. Deb wasn’t good for much that winter and spring. Some days we’d sit on the couch and watch TV. If it was sunny, I might take her for a drive in the mountains. I didn’t hope and I didn’t despair. I just spent time with her. Because I didn’t have anything better to do.
John has a presidential campaign. I know that must seem incredibly important, to him and to Elizabeth both. You couldn’t put out that kind of effort without thinking it was incredibly important.
But is it really? Is it more important than taking a drive in the mountains? More important than sitting on the couch together and watching TV?
John, Elizabeth: Go away for a few days. Think about it.
I’m sure John would be a great president. Maybe he still will be someday. But we’re a big country. We’ll get by.
Just think about it.
When cancer hits, you tell yourself a lot of things. I know this from experience: My wife was diagnosed with breast cancer in 1996, and then with a completely independent GIST tumor in 2003. She’s doing fine. She takes Gleevec, one of those targeted miracle drugs, and for Deb it has been more miraculous than for most people. Usually the cancer comes back in two years or so, but she’s at four years and counting.
Which brings me to John and Elizabeth Edwards.
Or maybe not quite yet. My role in the first cancer battle, other than just being the husband and keeping our friends informed, was to do all the background reading. Deb wanted to know what the best thinking was about attitude and visualization, how you should deal with your doctors, and so on. But she couldn’t stand to read the stuff, so I filtered it and told her what I thought she could use. I read a lot of accounts of people with cancer and how they handled it. A few of their insights were useful, but a lot of their stories were just depressing. I never told Deb about those.
One thing I learned was that it takes people a long time to come to grips with the reality of cancer. While Deb was in chemotherapy, a woman who worked for USA Today did a series describing her breast cancer diagnosis and treatment. Her cancer was further advanced than Deb’s, and I wasn’t convinced that Deb was going to make it. The USA Today women listened to her doctors’ plan-of-attack without objection. And then she realized that, as a side-effect, she’d never be able to bear children. That finally made it all real to her. That’s when she had to stop and ask if she really wanted to do this.
Reading USA Today in the waiting room, I thought (because the inside of my head is a very blunt, tactless place): “You idiot. Having children should be the last thing on your mind. You’ll be lucky if you’re not dead in two years.”
She was dead in two years.
Deb lived. Or (if past tense is inappropriate here), she’s still alive. That wasn’t really miraculous; it was more of a lucky throw of the dice. Maybe half or a quarter of the women in comparable situations lived. The second time was closer to the miracle end of the spectrum. The surgeon took something the size of a soccer ball out of her abdomen and didn’t think he got it all. He wasn’t sure what it was or whether it would be treatable at all. Turned out it was; that was the last we’ve seen of it. Four years now.
Now, maybe, it’s time to talk about Elizabeth Edwards. She was diagnosed the first time late in 2004. She got treatment, I’m not sure what kind, and now the cancer is back in a rib. That’s not unusual. When breast cancer spreads, it usually goes one of three places first: liver, lung, or bone. Deb’s mother’s breast cancer spread first to the liver, and then the lung. Edwards’ doctor noted that she has “very small” abnormalities on the lung that are “too small to say what’s going on in there.”
Later on, if it’s not stopped, it goes anywhere it wants. Ken Wilbur’s Grace and Grit tells the story of his wife’s breast cancer. It went to her brain finally, and that’s what killed her.
“We’re incredibly optimistic,” Elizabeth Edwards said today. John said that the doctors described it like diabetes, a condition that you live with but don’t cure. The campaign goes on. Elizabeth insisted it goes on. She’s talking about living “many years.”
Like I said at the beginning, you tell yourself a lot of things. Because we’re all supposed to be hopeful. Optimistic.
Count me as a dissenter against the religion of hope and optimism. What I’ve learned in the past 11 years – 15 if you go back to Deb’s mother’s cancer – is that hope and despair are two sides of the same coin. And you don’t want to flip that coin. You want to keep it in your pocket. Hope and despair both trap you in your head, and (just in case you don’t have a lot of life left), you don’t want to spend it in your head.
I find it amazing that the first sign of recurrence turned up Monday and the Edwards have already decided what to do. Maybe their minds really are that clear. But I’d have a better feeling right now if I knew they’d taken a vacation together for a week before they decided. Deb and I went away for a weekend the first time; it was a good idea.
Back in 1996, we knew what the score was: You get one shot at beating breast cancer. If it comes back, it kills you. Science has learned a lot about cancer in the last 11 years, but I don’t think that has changed. In the last decade I’ve seen a lot of headlines about exciting new treatments, but when you read deep into the articles you always find that people who used to die in 20 months get the treatment and live 24 months. Believe me, if it’s you or somebody you love, those four months are a godsend. But it’s not a revolution. We’re still not winning.
The impression you get from the Edwards press conference is that they’re not going to let this rock their boat. They’re going to keep sailing, and maybe they’ll sail into the White House.
But let me take a wild, unauthorized, irresponsible guess here. The reason the campaign goes on is that the White House is Elizabeth’s dream as much as John’s. And John can wait until 2012 or 2016, but she can’t. If she’s going to see President Edwards, it has to happen this time around.
I understand this thought process. There was a novel I started in 1999. It’s been on hold for several years now because other opportunities came up and crowded it out of my life. But if Deb had a recurrence, I’d be tempted to drop all the other stuff and finish it. Because otherwise she’d never read the ending. I’d always pictured her reading the ending.
So I think I get it. I think John imagines himself being sworn in on some wintery day in 2017, and he imagines himself thinking: “I wish Elizabeth could have seen this.”
But I hope they understand what they’re giving up. In late 96 and early 97 I wasn’t working. We had savings we could live off of. Deb wasn’t good for much that winter and spring. Some days we’d sit on the couch and watch TV. If it was sunny, I might take her for a drive in the mountains. I didn’t hope and I didn’t despair. I just spent time with her. Because I didn’t have anything better to do.
John has a presidential campaign. I know that must seem incredibly important, to him and to Elizabeth both. You couldn’t put out that kind of effort without thinking it was incredibly important.
But is it really? Is it more important than taking a drive in the mountains? More important than sitting on the couch together and watching TV?
John, Elizabeth: Go away for a few days. Think about it.
I’m sure John would be a great president. Maybe he still will be someday. But we’re a big country. We’ll get by.
Just think about it.
posted by Doug Muder at 3:06 AM
0 Comments:
Post a Comment
<< Home