Down, blue and low are all metaphors, when you think about it. We use metaphors for sadness for the same reason we use them for love (crazy, magical, falling) -- because the feelings are in some way directly untranslatable and appear so unreasonable to those who aren't immediately feeling them. "You're feeling sorry for yourself," said my daughter A., adding quickly, "Not that you don't have a right to." Yes, but "feeling sorry for yourself", as opposed to others taking pity on you, does have that patina of childish self-indulgence, narcissistic attention-seeking (if only the attention of yourself to yourself) that bodes no good. And those who look askance are right, in a way: you stow away your selfhood in a bubble of bad feeling, forgetting that others are suffering more than you are, though it's true that still other Others are suffering far less.
For example, here I am mourning my lost breast and (dubious) desirability, not to mention vigor, and a youngish woman (by comparison with me, that is -- something like 38 years old) of my acquaintance, who has two young children, has just finished chemo for invasive breast cancer, AND has a husband who has lost his job and hasn't been able to find another one in a year, though he is educated and experienced in his field. Now THAT'S what we Jews call tsouris. I feel guilty about feeling so sad when I think about her. Yet when I swivel my head, I see all my friends, not one of whom has had to go through what I have with my bodily ills, and then I just feel mad.
This is nothing many others haven't felt, I'm sure. My daughter C. reminded me today that I felt much the same one week after surgery last January. So this irritable mood could be temporary. Likely it's my futile reaction to having my usual distractions taken away, since restlessness and a certain grief are pretty much my default positions. What normally rescues me is the feeling that I am working toward a goal, say making money, writing a book, looking for a lover, solving all my children's problems. And now it's just me and me (and two cats). And, of course, you.
Tuesday, January 17, 2012
Sunday, January 15, 2012
Get Used to It
Five days after surgery. I'm doing so well that I stopped popping my Vicodin after waking in the middle of the night in slight pain as I did the first few days. I miss the deep, wonderful sleep that Vicodin (or was it just the exhaustion of recent surgery?) gave me, but something in me just refuses to take drugs I don't need; clearly I'd make a terrible addict.
(I can't help wondering why people crave Oxycontin, enough to make it popular on the street...does it induce euphoria? I only took it when I had pain at night, and then it put me right back to sleep. I could find out by taking it now, when it's daylight, but...the truth is I just can't be bothered. Again, not good for drug dealers. I just don't see myself sitting around in a drug-induced groggy euphoria. Maybe if I were curled up in the arms of someone I loved.)
So now that I'm getting a little better every day, I'm restless, tired of the restrictions of my apartment (not even a real sofa to lounge on), but not up to wandering abroad too much. I'm starting to feel cut off from the world, yet not well enough to join it.
Most of all, I'm aware that I have to deal with this one-breasted condition that is permanently a part of me now. I'm an Amazon, and I don't mean the South American region or book website kind. This look would be convenient if I were strapping on armor or a pouch for arrows or whatever Amazons did (Wikipedia tells me the origin of the name is a-mazos, meaning "without breast"). But in our society, not possessing matched breast mounds or actual cleavage is tantamount to having twelve fingers. No one will be able to resist staring if they suspect.
Actually my difficulty has two parts: how others will see me (as ugly and freakish), and how I will feel about myself (i.e. ugly and freakish). I don't yet know how well I can cover the problem of my clothed appearance, since I can't yet wear a real bra, much less put stuff in it...I'll find that out later. I can, on the other hand, see myself naked, and yes, it is a shock. I will be blunt: I don't like it.
(I can't help wondering why people crave Oxycontin, enough to make it popular on the street...does it induce euphoria? I only took it when I had pain at night, and then it put me right back to sleep. I could find out by taking it now, when it's daylight, but...the truth is I just can't be bothered. Again, not good for drug dealers. I just don't see myself sitting around in a drug-induced groggy euphoria. Maybe if I were curled up in the arms of someone I loved.)
So now that I'm getting a little better every day, I'm restless, tired of the restrictions of my apartment (not even a real sofa to lounge on), but not up to wandering abroad too much. I'm starting to feel cut off from the world, yet not well enough to join it.
Most of all, I'm aware that I have to deal with this one-breasted condition that is permanently a part of me now. I'm an Amazon, and I don't mean the South American region or book website kind. This look would be convenient if I were strapping on armor or a pouch for arrows or whatever Amazons did (Wikipedia tells me the origin of the name is a-mazos, meaning "without breast"). But in our society, not possessing matched breast mounds or actual cleavage is tantamount to having twelve fingers. No one will be able to resist staring if they suspect.
Actually my difficulty has two parts: how others will see me (as ugly and freakish), and how I will feel about myself (i.e. ugly and freakish). I don't yet know how well I can cover the problem of my clothed appearance, since I can't yet wear a real bra, much less put stuff in it...I'll find that out later. I can, on the other hand, see myself naked, and yes, it is a shock. I will be blunt: I don't like it.
Friday, January 13, 2012
The Deed is Done
The last post was two days before surgery; now it's three days after. Before surgery, I was a nervous wreck, as usual obsessing about details that might not bother other people. Would I panic on the operating table before anesthesia as I have in other stressful situations (like MRIs), when my throat gets dry and it feels like I can't swallow? Would I wake up as I did from the last general anesthesia 12 years ago, feeling like I was trapped in a bad dream, moaning helplessly in pain for what seemed like hours?
As it happened, I had a much better experience than I'd dared to hope. The very early hour of surgery I'd requested worked well, since it meant I wasn't sitting around all day being nervous (and hungry). I wasn't a wreck on the operating table, and the anethesiologist cleverly told me he was just giving me "a bit of something to relax" before the anesthesia, which is the last thing I remember before waking up (the last thing I said was my reply, "Good idea!") And best of all, I had a far better wake-up than the awful one 12 years ago, and once I was in the hospital room, I felt pretty good and quite euphoric that it was over.
Why was my experience better? I'm not sure, but some of the staff told me that they now use propafol, the drug that killed Michael Jackson ("But he wasn't in a hospital," a nurse pointed out when I said that), which wears off more quickly than older drugs. Also, I talked to the anethesiologist, a charming young man, about my bad experience, which I learned is called "slow emergence" -- who knew it had a label? Labels are so comforting, implying that you are not alone and that someone somewhere is working on the problem. He nodded wisely, so maybe that helped.
My hospital stay was almost pleasant, since Sloan-Kettering has the whole thing, from surgery to leaving the hospital, down to a science, including "classes" on post-op care, exercises for the arm, and three volunteer ladies who enter your room and offer to sing songs of your choice a capella to cheer you up. That is, they offer various genres of songs, of which I chose "Soothing." They were sweet; I mean, how nice is that? Also, the food is great there and can be ordered any time of day.
For some reason I am recovering faster and have more stamina all around than even last January, when my surgery was only outpatient. I don't get this; must ask Dr. C. at my appointment in a week, out of curiosity. But I am grateful. Since I am also neurotic, I somehow also fear that the relatively easy time I've had so far is setting me up for more unexpected suffering down the line. This is because in my heart of hearts I believe that Someone Up There (not God, exactly, more like an unruly teenage boy on some more advanced planet) has got it in for me and will make me pay when I think I've escaped Bad Things.
This is an awkward time, of course: it's just weird going from never, ever having time to myself (the teaching, the book, the health problems, the family) to sitting around uselessly. When I feel more like myself, I'll do all sorts of fun stuff like cooking, exercising, museums, movies and writing, or at least that's the plan. But for now, I can't do much beyond lunch with friends in the neighborhood, so it's me and my tiny studio apartment, which makes me restless.
And then there's the question of my new body. Would I freak out when I saw the results of the mastectomy?
More about that later.
As it happened, I had a much better experience than I'd dared to hope. The very early hour of surgery I'd requested worked well, since it meant I wasn't sitting around all day being nervous (and hungry). I wasn't a wreck on the operating table, and the anethesiologist cleverly told me he was just giving me "a bit of something to relax" before the anesthesia, which is the last thing I remember before waking up (the last thing I said was my reply, "Good idea!") And best of all, I had a far better wake-up than the awful one 12 years ago, and once I was in the hospital room, I felt pretty good and quite euphoric that it was over.
Why was my experience better? I'm not sure, but some of the staff told me that they now use propafol, the drug that killed Michael Jackson ("But he wasn't in a hospital," a nurse pointed out when I said that), which wears off more quickly than older drugs. Also, I talked to the anethesiologist, a charming young man, about my bad experience, which I learned is called "slow emergence" -- who knew it had a label? Labels are so comforting, implying that you are not alone and that someone somewhere is working on the problem. He nodded wisely, so maybe that helped.
My hospital stay was almost pleasant, since Sloan-Kettering has the whole thing, from surgery to leaving the hospital, down to a science, including "classes" on post-op care, exercises for the arm, and three volunteer ladies who enter your room and offer to sing songs of your choice a capella to cheer you up. That is, they offer various genres of songs, of which I chose "Soothing." They were sweet; I mean, how nice is that? Also, the food is great there and can be ordered any time of day.
For some reason I am recovering faster and have more stamina all around than even last January, when my surgery was only outpatient. I don't get this; must ask Dr. C. at my appointment in a week, out of curiosity. But I am grateful. Since I am also neurotic, I somehow also fear that the relatively easy time I've had so far is setting me up for more unexpected suffering down the line. This is because in my heart of hearts I believe that Someone Up There (not God, exactly, more like an unruly teenage boy on some more advanced planet) has got it in for me and will make me pay when I think I've escaped Bad Things.
This is an awkward time, of course: it's just weird going from never, ever having time to myself (the teaching, the book, the health problems, the family) to sitting around uselessly. When I feel more like myself, I'll do all sorts of fun stuff like cooking, exercising, museums, movies and writing, or at least that's the plan. But for now, I can't do much beyond lunch with friends in the neighborhood, so it's me and my tiny studio apartment, which makes me restless.
And then there's the question of my new body. Would I freak out when I saw the results of the mastectomy?
More about that later.
Sunday, January 8, 2012
From Decision to Actuality
Yes, I'm back. It's two days before my surgery, and the end of a hell of a year (let's hope the beginning of another hell of a year -- in a good way, for once.)
I thought I had reached a good compromise: I'll go for removing the breast, but I'll also go for an implant --- not as complicated and painful as tissue transplant, which I understand would look and feel better, but at least something there, so I don't have to deal quite so much with the loss of a body part. But a consult with the plastic surgeon scheduled to do the implant changed my mind. I knew that the rate of complications and outright "failure" of the implant (meaning it would have to be removed because of problems like infection, leakage, encapsulization) is higher in a woman who had been previously radiated like me. But having learned more about it from a former patient I was hooked up with by Sloan-Kettering, and from the surgeon, I was dismayed to realize that the rate was higher than I'd realized. Not very unlikely, I could go through the pain and suffering of the implant surgery for nothing. I think if I had the normal odds of success (95%), I would do it, but 50-70%, with a 40% rate of infection, seemed too high to be worth it. So reluctantly, I decided not to bother, and just to go naked, so to speak, on one side.
This is going to take some getting used to, that's for sure. I'm going to try to track the psychological changes here on this blog, partly for my own mental health, and also in case anyone in my position happens to wander over here, as I've wandered into other women's experiences online.
I wonder how I will handle the difference between having the disfigured breast I have now, and having none at all, starting the day after tomorrow. Already the "good" breast ("Good girl," I want to tell it) looks more and more beautiful to me, though it's definitely not the boob of a youngster of 30 or 40 or even 50. But it's whole and substantial and points the right way, and has the right curve at the bottom. I look at women around me and wonder if they appreciate how lovely and intact they are, and not just the young ones. The surgeons were eager to tell me that after an implant they can match the size of the breasts, real and artificial, by reducing the natural breast ("just a cut around the nipple and in the crease, take out some tissue, and you're evened out"). No thanks! No one is taking a knife to this beauty unless it's to save my life again.
This surgery is going to cause me grief, I know. At the same time, I'm more afraid of physical suffering (not to mention death) than I am of psychological pain and stress, except where my children are concerned. I always have been more of a risk taker emotionally than physically, maybe because I have had a difficult time in some ways in my life and feel like I can tough that sort of thing out. We'll see, won't we?
I thought I had reached a good compromise: I'll go for removing the breast, but I'll also go for an implant --- not as complicated and painful as tissue transplant, which I understand would look and feel better, but at least something there, so I don't have to deal quite so much with the loss of a body part. But a consult with the plastic surgeon scheduled to do the implant changed my mind. I knew that the rate of complications and outright "failure" of the implant (meaning it would have to be removed because of problems like infection, leakage, encapsulization) is higher in a woman who had been previously radiated like me. But having learned more about it from a former patient I was hooked up with by Sloan-Kettering, and from the surgeon, I was dismayed to realize that the rate was higher than I'd realized. Not very unlikely, I could go through the pain and suffering of the implant surgery for nothing. I think if I had the normal odds of success (95%), I would do it, but 50-70%, with a 40% rate of infection, seemed too high to be worth it. So reluctantly, I decided not to bother, and just to go naked, so to speak, on one side.
This is going to take some getting used to, that's for sure. I'm going to try to track the psychological changes here on this blog, partly for my own mental health, and also in case anyone in my position happens to wander over here, as I've wandered into other women's experiences online.
I wonder how I will handle the difference between having the disfigured breast I have now, and having none at all, starting the day after tomorrow. Already the "good" breast ("Good girl," I want to tell it) looks more and more beautiful to me, though it's definitely not the boob of a youngster of 30 or 40 or even 50. But it's whole and substantial and points the right way, and has the right curve at the bottom. I look at women around me and wonder if they appreciate how lovely and intact they are, and not just the young ones. The surgeons were eager to tell me that after an implant they can match the size of the breasts, real and artificial, by reducing the natural breast ("just a cut around the nipple and in the crease, take out some tissue, and you're evened out"). No thanks! No one is taking a knife to this beauty unless it's to save my life again.
This surgery is going to cause me grief, I know. At the same time, I'm more afraid of physical suffering (not to mention death) than I am of psychological pain and stress, except where my children are concerned. I always have been more of a risk taker emotionally than physically, maybe because I have had a difficult time in some ways in my life and feel like I can tough that sort of thing out. We'll see, won't we?
Friday, October 14, 2011
Decision
It was time to make this decision, finally. I had the surgery to remove the second cancer (recurrence or new one, I will probably never know) in January, and it's now October: long enough to make up my mind.
"Go with your gut!" people say, but how can I have a gut feeling when I'm flying blind? I tell you, if I could have an iron-clad guarantee that I would not die from another recurrence, I would not have the surgery; I hate the idea of having no breast there at all (and the success of reconstruction is iffy, says the plastic surgeon, thanks to previous radiation). And not least, I hate the very idea of surgery itself.
But though metastasis is a small risk (according to my surgeon -- everyone else is deliberately vague and stresses that it's impossible to estimate), even a small reduction in the possibility of dying from this is beginning to sound better. The turning point came when I went to an oncologist outside my hospital, someone recommended by a friend of a colleague. He didn't examine me, just spent an hour going over every detail of my records to draw the big picture. Much of this I already knew by heart, but he said one thing that stung: "They threw everything at you the first time, and it didn't work." Therefore, he implied, it's more likely to come back, for reasons we don't know. And since the last time it didn't show up on imaging, that could happen again; yearly mammos and MRIs may not help. He didn't ask this, but I asked myself: do I want to go through this again?
No, I don't. So I think I've decided to get the surgery, I hope in January so I can finish out the semester and also finish my book, now in the last stages of revision. I haven't yet informed my doctors of this, and I feel strangely reluctant to. Some people know, and I've had a bad reaction to telling them, as if I don't have to face the decision if no one knows about it. I'm still a bit in denial in other words, but that probably just means I need more time to accustom myself to the thought of it.
I'm both relieved and scared to have decided.
"Go with your gut!" people say, but how can I have a gut feeling when I'm flying blind? I tell you, if I could have an iron-clad guarantee that I would not die from another recurrence, I would not have the surgery; I hate the idea of having no breast there at all (and the success of reconstruction is iffy, says the plastic surgeon, thanks to previous radiation). And not least, I hate the very idea of surgery itself.
But though metastasis is a small risk (according to my surgeon -- everyone else is deliberately vague and stresses that it's impossible to estimate), even a small reduction in the possibility of dying from this is beginning to sound better. The turning point came when I went to an oncologist outside my hospital, someone recommended by a friend of a colleague. He didn't examine me, just spent an hour going over every detail of my records to draw the big picture. Much of this I already knew by heart, but he said one thing that stung: "They threw everything at you the first time, and it didn't work." Therefore, he implied, it's more likely to come back, for reasons we don't know. And since the last time it didn't show up on imaging, that could happen again; yearly mammos and MRIs may not help. He didn't ask this, but I asked myself: do I want to go through this again?
No, I don't. So I think I've decided to get the surgery, I hope in January so I can finish out the semester and also finish my book, now in the last stages of revision. I haven't yet informed my doctors of this, and I feel strangely reluctant to. Some people know, and I've had a bad reaction to telling them, as if I don't have to face the decision if no one knows about it. I'm still a bit in denial in other words, but that probably just means I need more time to accustom myself to the thought of it.
I'm both relieved and scared to have decided.
Monday, August 22, 2011
Back Again
Well, it's been a long time, hasn't it? I haven't thought about this question of the mastectomy very much since my last post in May, actually...and when friends have asked what I decided, I find myself saying "I THINK I will have the mastectomy, but not till January."'
Why January? Because I want to finish the book I'm writing, and I want to teach my classes this fall. Then, if I do the surgery, I can take the spring to recover, devoting myself to it like a full-time job.
This month I saw the two important doctors: the oncologist, Dr. L., and the breast surgeon, Dr. C, who I have the tiniest crush on (there's something about the combination of tall and calm that I'm drawn to). And here's where I'm left: The oncologist still thinks I should get the mastectomy, and the surgeon, whom I saw today, still argues just the opposite.
Her reasons:
1. The Padgett's was a recurrence in the same breast.
2. I can't be radiated, because I have already been radiated there.
3. There was a close margin, .5 mm.
Here are Dr. C's reasons:
1. Yes, it was a recurrence, but the amount of DCIS was tiny, "microscopic." Dr. L. had mentioned this in passing, but didn't give it much importance.
2. Good and bad margins are not all that reliable; 1 out of 3 times, there is cancer where there's a clean margin, and no cancer where there's a close one. He seems confident that I'm "low-risk".
3. For cases that are low-risk, there is no evidence that mastectomy will be life-saving. The DCIS grows slowly and can be caught on yearly mammograms.
4. He intimated that the surgical result will not be pretty, because the tissue has been radiated, so the reconstruction will likely not look very good. Sigh.
Of course looks is not my first priority -- living is. But I could feel that Reason #4 was not something I could easily discount either.
We agreed that I would get a mammo and MRI (ugh) in January, and see him again. By then I should know what I want to do. Except I don't know how I'm going to make this decision any better than I can make it now, and I don't feel equipped to make it now, unless a little scroll descends from heaven and tells me EXACTLY HOW MUCH (or even approximately how much) I'm risking my damn life by not getting the surgery.
Why January? Because I want to finish the book I'm writing, and I want to teach my classes this fall. Then, if I do the surgery, I can take the spring to recover, devoting myself to it like a full-time job.
This month I saw the two important doctors: the oncologist, Dr. L., and the breast surgeon, Dr. C, who I have the tiniest crush on (there's something about the combination of tall and calm that I'm drawn to). And here's where I'm left: The oncologist still thinks I should get the mastectomy, and the surgeon, whom I saw today, still argues just the opposite.
Her reasons:
1. The Padgett's was a recurrence in the same breast.
2. I can't be radiated, because I have already been radiated there.
3. There was a close margin, .5 mm.
Here are Dr. C's reasons:
1. Yes, it was a recurrence, but the amount of DCIS was tiny, "microscopic." Dr. L. had mentioned this in passing, but didn't give it much importance.
2. Good and bad margins are not all that reliable; 1 out of 3 times, there is cancer where there's a clean margin, and no cancer where there's a close one. He seems confident that I'm "low-risk".
3. For cases that are low-risk, there is no evidence that mastectomy will be life-saving. The DCIS grows slowly and can be caught on yearly mammograms.
4. He intimated that the surgical result will not be pretty, because the tissue has been radiated, so the reconstruction will likely not look very good. Sigh.
Of course looks is not my first priority -- living is. But I could feel that Reason #4 was not something I could easily discount either.
We agreed that I would get a mammo and MRI (ugh) in January, and see him again. By then I should know what I want to do. Except I don't know how I'm going to make this decision any better than I can make it now, and I don't feel equipped to make it now, unless a little scroll descends from heaven and tells me EXACTLY HOW MUCH (or even approximately how much) I'm risking my damn life by not getting the surgery.
Tuesday, May 24, 2011
I Visit the Plastic Surgeon
Yes, it's been a long time...because nothing has happened between the last post and now that's relevant to this awful decision I have to make: to have or not to have a mastectomy. Probably I've lost all readers and I'm writing this for myself, but here goes.
I went today to consult with the plastic surgeon who would do the reconstruction if I do have the mastectomy. It was disappointing in that the choices are a 6-10 hour, very invasive surgery (TRAM flap, which means taking muscle from the stomach) or an implant, which though less invasive, has a higher than usual chance of not working well or maybe at all, due to my breast having been radiated -- I think he said 50%, though he also said that's just a guess, as usual. Apparently radiated tissue can't be counted on to support the implant, so there could be complications that would require either re-operating or removing it altogether.
I'm not a fan of tons of anesthesia and pain, so a big No to the muscle flap surgery for sure -- but I was hoping for better news for the implant. Also, he said there's no way an implant will look even as good as what I have now, and it will probably match the other breast in size no better or possibly even less.
I don't know if this will affect my ultimate decision except it makes it even more difficult. Ugh.
The next step is an appointment on July 5th with my oncologist -- I want to ask her about the timing, since I'd prefer to do the surgery in January, if possible.
"It's just a boob," said my daughter, who wants me to have the mastectomy. I should repeat that like a mantra: just a boob, just a boob.
I went today to consult with the plastic surgeon who would do the reconstruction if I do have the mastectomy. It was disappointing in that the choices are a 6-10 hour, very invasive surgery (TRAM flap, which means taking muscle from the stomach) or an implant, which though less invasive, has a higher than usual chance of not working well or maybe at all, due to my breast having been radiated -- I think he said 50%, though he also said that's just a guess, as usual. Apparently radiated tissue can't be counted on to support the implant, so there could be complications that would require either re-operating or removing it altogether.
I'm not a fan of tons of anesthesia and pain, so a big No to the muscle flap surgery for sure -- but I was hoping for better news for the implant. Also, he said there's no way an implant will look even as good as what I have now, and it will probably match the other breast in size no better or possibly even less.
I don't know if this will affect my ultimate decision except it makes it even more difficult. Ugh.
The next step is an appointment on July 5th with my oncologist -- I want to ask her about the timing, since I'd prefer to do the surgery in January, if possible.
"It's just a boob," said my daughter, who wants me to have the mastectomy. I should repeat that like a mantra: just a boob, just a boob.
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