The good, the bad and the ugly
The bad, at this very moment, is not so bad--all it really involves is the fact that not having my own computer right at the moment SUCKS THE BIG FAT RED ONE!
And at the moment, that's as bad as it gets, really. Which is pretty good stuff.
It sounds, right at the moment, like we may have solved Paul's mystery cough. He had kind of a rough night with the coughing, but, this morning, he decided to take a Zyrtec. And he's been sleeping peacefully, without coughing, ever since. So I have the feeling that it is as we suspected, and there is some allergic something going on with him, and that the coughing can be controlled with an antihistimine. The coughing always got worse when the windows were open or when he was outside, and I had it in the back of my head that that's what it was, especially since the visiting nurse came on Monday and indicated a clear chest when she had a little listen. And his temperature has been down to normal for a couple of days now, so whatever was going on there seems to have corrected itself.
Yesterday, we toodled ourselves down to the University of Pennsylvania to meet with Dr. Flaherty in regards to the melanoma. He is as Cathy indicated--he talks fast, he talks a lot. But he's farging BRILLIANT, he clearly is NOT on any pharmaceutical house's payroll, he has very kind eyes, and he made me cry. A lot.
The crying is part of the GOOD, by the way, because what he said was of such a comfort that I felt like he took the weight of the world off my shoulders.
My husband, through this whole thing, has been remarkably positive. He tends to describe it as "stupidly optimistic", but we'll go with "remarkably positive" for now. And while I have done everything in my power to follow his lead in that attitude, I've had my moments.
And we discussed why on the way home in the car.
It has to do with the fact that I'm not inside him. I'm out here, all alone. I can't feel what he feels, I can't understand the suffering, I can't relate in any way--and this is often a drawback, because my lack of understanding makes me profoundly stupid in thinking of ways to help him. This compounds the heartache of empathy with the heartache of frustration and helplessness. I can do what I can do, but the limitations imposed by my severely curtailed understanding is PROFOUND.
It's not happening to me, and because of that, I feel like a shitty wife, because it's quite possibly the very first thing we've experienced in the course of our relationship that I cannot share with him completely.
And that feels awful.
In case you haven't noticed before now, I'm fiercely protective of him. There is a sweetness in him, a vulnerability, that makes me go all she-bear on the world when the world treats him less gently and less lovingly than I feel he deserves to be treated. And this latest medical injustice has had me feeling absolutely crappy, because there's no one to be mad at. There's no one I can blame, there's no one to scream at, there's no one out there who has done this to him. It's just been one of those "shit happens" kind of things, and there isn't a goddamned thing I can do about it--except wish, fervently, that it was happening to ME, and not to him.
But it didn't. It happened to him. And I can't even do much about that.
Anyway...
One of the things that has had me completely heartsick is the idea that the treatments for this particular disease are stupendously ineffective. All this chatter about interferon and such made me frikkin' crazy, because it's a terrifically rough course of treatment--and on top of that, there's a < 1% chance that it does any good at all.
LESS THAN ONE PERCENT.
Sorry--that's just not a good enough result to put him through that kind of suffering for a year.
But that's what the medical community had to offer as the "gold standard" of treatment.
Yay.
So.
Dr. Flaherty came in, and he talked to us (with two fellows standing by), about all this stuff. He talked about radiation (which he assured us right up front that Paul positively did NOT qualify for--his cancer isn't severe enough). He talked about interferon, and about interleukin and about melanoma vaccines in trial right now at Sloan Kettering and UVA at Charlottesville and the National Cancer Institute...and the fact is, everything right now is a great big question mark. Nobody can say whether or not any of these things actually WORK, and may not be able to say with any kind of assurance that any of them WILL work for about 10 to 15 more years.
And the ursa major in my heart just screams, "THAT'S NOT GOOD ENOUGH!!!"
And all of this sounds pretty bleak, right?
So then, he starts talking about Paul, and things start getting better.
First thing he says is that, depending on the results of the biopsies that come back from the lymph node dissection, he may not be sick enough to qualify for adjuvant treatment--in fact, he's fairly certain that Paul won't be, because the traces of melanoma in the sentinel node were microscopic, and it's fairly certain that the results of the node dissection will show no further evidence of disease. The scans indicate that no visible melanoma has spread to distant organs. The results of the blood tests indicate that there is no active cancer in his system. And while melanoma is an insidious cancer in that it recurs relentlessly and there is really no chemotheraputic treatment to which it responds well and/or reliably, it is also a cancer that responds quite nicely to surgery, and that therefore a watchful waiting course of treatment is probably the best way to handle a melanoma in this stage, and that, quite probably, the worst is over, no further treatment will be necessary, and that he can safely concentrate simply on healing from the surgeries rather than wondering what's next.
And then he looked me square in my tear-welling eyes and said, "It's important to remember that more people recover from cancer than die from it."
I lost it. Right then and there, I lost it.
I kept it together, but the unshed tears sat like a burning ball in my chest, and I could hardly wait to get out of there so that I could get to the privacy of my car and start bawling.
Paul took all this information completely in stride--the doctor was, in fact, confirming what he had known in his heart all along.
But for me, this was a revelation, and a confirmation that it was totally OK to not let my husband go through any further suffering, and that I could do it without having the niggling suspicion in the back of my head that choosing NOT to do interferon was somehow neglectful, or less than the perfect, balls-out treatment that he deserved.
Of course, as part of the clinical trial, he'll be scanned once every three months for a year, and then at ever-decreasing intervals over the next several years, and probably for the rest of his life. And that's OK--CT scans don't HURT. They don't cause suffering. They don't make you sick. And if anything turns up on any of those scans, then we deal with it. But this doctor--this wildly qualified medical oncologist at one of the very few state-of-the-art cancer centers in America--doesn't believe, at this point, that we have anything like that to worry about, and that, if it does recur, it will show on the scans at a manageable stage.
And then he said, "By the way, you're in very good hands with Dr. Desai. He's an excellent surgeon, and very, very good at what he does. You are under extremely good care."
So yeah--that was yesterday.
I don't know when I have felt more reassured, more relieved or more grateful in my life.
And at the moment, that's as bad as it gets, really. Which is pretty good stuff.
It sounds, right at the moment, like we may have solved Paul's mystery cough. He had kind of a rough night with the coughing, but, this morning, he decided to take a Zyrtec. And he's been sleeping peacefully, without coughing, ever since. So I have the feeling that it is as we suspected, and there is some allergic something going on with him, and that the coughing can be controlled with an antihistimine. The coughing always got worse when the windows were open or when he was outside, and I had it in the back of my head that that's what it was, especially since the visiting nurse came on Monday and indicated a clear chest when she had a little listen. And his temperature has been down to normal for a couple of days now, so whatever was going on there seems to have corrected itself.
Yesterday, we toodled ourselves down to the University of Pennsylvania to meet with Dr. Flaherty in regards to the melanoma. He is as Cathy indicated--he talks fast, he talks a lot. But he's farging BRILLIANT, he clearly is NOT on any pharmaceutical house's payroll, he has very kind eyes, and he made me cry. A lot.
The crying is part of the GOOD, by the way, because what he said was of such a comfort that I felt like he took the weight of the world off my shoulders.
My husband, through this whole thing, has been remarkably positive. He tends to describe it as "stupidly optimistic", but we'll go with "remarkably positive" for now. And while I have done everything in my power to follow his lead in that attitude, I've had my moments.
And we discussed why on the way home in the car.
It has to do with the fact that I'm not inside him. I'm out here, all alone. I can't feel what he feels, I can't understand the suffering, I can't relate in any way--and this is often a drawback, because my lack of understanding makes me profoundly stupid in thinking of ways to help him. This compounds the heartache of empathy with the heartache of frustration and helplessness. I can do what I can do, but the limitations imposed by my severely curtailed understanding is PROFOUND.
It's not happening to me, and because of that, I feel like a shitty wife, because it's quite possibly the very first thing we've experienced in the course of our relationship that I cannot share with him completely.
And that feels awful.
In case you haven't noticed before now, I'm fiercely protective of him. There is a sweetness in him, a vulnerability, that makes me go all she-bear on the world when the world treats him less gently and less lovingly than I feel he deserves to be treated. And this latest medical injustice has had me feeling absolutely crappy, because there's no one to be mad at. There's no one I can blame, there's no one to scream at, there's no one out there who has done this to him. It's just been one of those "shit happens" kind of things, and there isn't a goddamned thing I can do about it--except wish, fervently, that it was happening to ME, and not to him.
But it didn't. It happened to him. And I can't even do much about that.
Anyway...
One of the things that has had me completely heartsick is the idea that the treatments for this particular disease are stupendously ineffective. All this chatter about interferon and such made me frikkin' crazy, because it's a terrifically rough course of treatment--and on top of that, there's a < 1% chance that it does any good at all.
LESS THAN ONE PERCENT.
Sorry--that's just not a good enough result to put him through that kind of suffering for a year.
But that's what the medical community had to offer as the "gold standard" of treatment.
Yay.
So.
Dr. Flaherty came in, and he talked to us (with two fellows standing by), about all this stuff. He talked about radiation (which he assured us right up front that Paul positively did NOT qualify for--his cancer isn't severe enough). He talked about interferon, and about interleukin and about melanoma vaccines in trial right now at Sloan Kettering and UVA at Charlottesville and the National Cancer Institute...and the fact is, everything right now is a great big question mark. Nobody can say whether or not any of these things actually WORK, and may not be able to say with any kind of assurance that any of them WILL work for about 10 to 15 more years.
And the ursa major in my heart just screams, "THAT'S NOT GOOD ENOUGH!!!"
And all of this sounds pretty bleak, right?
So then, he starts talking about Paul, and things start getting better.
First thing he says is that, depending on the results of the biopsies that come back from the lymph node dissection, he may not be sick enough to qualify for adjuvant treatment--in fact, he's fairly certain that Paul won't be, because the traces of melanoma in the sentinel node were microscopic, and it's fairly certain that the results of the node dissection will show no further evidence of disease. The scans indicate that no visible melanoma has spread to distant organs. The results of the blood tests indicate that there is no active cancer in his system. And while melanoma is an insidious cancer in that it recurs relentlessly and there is really no chemotheraputic treatment to which it responds well and/or reliably, it is also a cancer that responds quite nicely to surgery, and that therefore a watchful waiting course of treatment is probably the best way to handle a melanoma in this stage, and that, quite probably, the worst is over, no further treatment will be necessary, and that he can safely concentrate simply on healing from the surgeries rather than wondering what's next.
And then he looked me square in my tear-welling eyes and said, "It's important to remember that more people recover from cancer than die from it."
I lost it. Right then and there, I lost it.
I kept it together, but the unshed tears sat like a burning ball in my chest, and I could hardly wait to get out of there so that I could get to the privacy of my car and start bawling.
Paul took all this information completely in stride--the doctor was, in fact, confirming what he had known in his heart all along.
But for me, this was a revelation, and a confirmation that it was totally OK to not let my husband go through any further suffering, and that I could do it without having the niggling suspicion in the back of my head that choosing NOT to do interferon was somehow neglectful, or less than the perfect, balls-out treatment that he deserved.
Of course, as part of the clinical trial, he'll be scanned once every three months for a year, and then at ever-decreasing intervals over the next several years, and probably for the rest of his life. And that's OK--CT scans don't HURT. They don't cause suffering. They don't make you sick. And if anything turns up on any of those scans, then we deal with it. But this doctor--this wildly qualified medical oncologist at one of the very few state-of-the-art cancer centers in America--doesn't believe, at this point, that we have anything like that to worry about, and that, if it does recur, it will show on the scans at a manageable stage.
And then he said, "By the way, you're in very good hands with Dr. Desai. He's an excellent surgeon, and very, very good at what he does. You are under extremely good care."
So yeah--that was yesterday.
I don't know when I have felt more reassured, more relieved or more grateful in my life.