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.
Friday, October 14, 2011
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.
Tuesday, April 5, 2011
I Advance a Step
If "advance" means getting closer to a decision about mastectomy, I think (note hesitant quality of declarative sentence) I've progressed a bit.
Yesterday I had my revisit with Dr. L., the oncologist. I told her I need her help deciding what to do, and described my meeting with Dr. M, the radiologist who advocated so vehemently for mastectomy. I was going to ask Dr. L. for more facts, but she said "it would be hard to say" what my chances of recurrence and survival would be with or without mastectomy.
Before I could answer, she waived it aside: "I agree with Dr. M., " she said in her sweet, calm voice (so unlike Dr. M.'s more forceful tone), "The close margins...the inability to have radiation...the fact that this is a recurrence in the same breast -- if it were me, I'd have a mastectomy."
I guess that did it. But what about Dr. C., my surgeon, and his completely opposite opinion? It seems she had emailed him after getting the news about no radiation. "He's very confident that you'd be fine as is," she said, which was not news, "but I disagree. Even if you survived another recurrence, you don't want a recurrence, period. You wouldn't know if it had metastasized."
There you go. A small chance, but deadly if you get unlucky. And I have not been very lucky, though so grateful to still be here. So...I guess I will be doing it. More on that another time.
Yesterday I had my revisit with Dr. L., the oncologist. I told her I need her help deciding what to do, and described my meeting with Dr. M, the radiologist who advocated so vehemently for mastectomy. I was going to ask Dr. L. for more facts, but she said "it would be hard to say" what my chances of recurrence and survival would be with or without mastectomy.
Before I could answer, she waived it aside: "I agree with Dr. M., " she said in her sweet, calm voice (so unlike Dr. M.'s more forceful tone), "The close margins...the inability to have radiation...the fact that this is a recurrence in the same breast -- if it were me, I'd have a mastectomy."
I guess that did it. But what about Dr. C., my surgeon, and his completely opposite opinion? It seems she had emailed him after getting the news about no radiation. "He's very confident that you'd be fine as is," she said, which was not news, "but I disagree. Even if you survived another recurrence, you don't want a recurrence, period. You wouldn't know if it had metastasized."
There you go. A small chance, but deadly if you get unlucky. And I have not been very lucky, though so grateful to still be here. So...I guess I will be doing it. More on that another time.
Saturday, April 2, 2011
Square 2.5
I have another appointment with Dr. L, the oncologist, on Monday. My hope is to advance the decision-making process, which I'm finding increasingly awful, by tossing pointed questions at her. Because my friends are now lining up on the mastectomy question, and let me tell you, I could form two good teams. So that not only hasn't helped, it's increased my anxiety and stress about it all.
Every time I think, Okay, it will be fine as it is, someone says, "You're kidding me, you're going to risk your life, even a little bit, for that little old breast?"
Then I think, That's absurd, of course I won't. Better have the dreadful surgeries and get it over with. Then someone else says, "The surgeon wouldn't have said it was safe if he didn't think it was. Don't trust the ones who tell you to run to the most extreme measure. Surgery is hell you don't want to put yourself through for very little risk."
And I'm back where I was. So we'll see if Dr. L can manage to shed more light on Monday.
Every time I think, Okay, it will be fine as it is, someone says, "You're kidding me, you're going to risk your life, even a little bit, for that little old breast?"
Then I think, That's absurd, of course I won't. Better have the dreadful surgeries and get it over with. Then someone else says, "The surgeon wouldn't have said it was safe if he didn't think it was. Don't trust the ones who tell you to run to the most extreme measure. Surgery is hell you don't want to put yourself through for very little risk."
And I'm back where I was. So we'll see if Dr. L can manage to shed more light on Monday.
Friday, March 18, 2011
Square Two
Ah, the long-anticipated visit to the radiologist today. The idea was to see if my breast-conserving surgery could be given a radiology boost to make another recurrence less likely down the line. As Dr. C., my dashing surgeon, had explained, you usually can't re-radiate breast tissue: it tends to shrink or collapse or do something dreadful under the rays a second time. But with new techniques, it might be possible to do "targeted" radiation and get away with it. A study is underway at Sloan-Kettering, and he thought I might be part of it.
I was sort of hoping not to do it, actually: the idea of trooping an hour each way to the hospital for lengthy periods of time is pretty unthinkable right now. But then, who wouldn't want a boost to one's chances?
This idea was pretty much crushed when the radiologist Dr. M., who is doing the study of re-radiation I would have been part of, announced on meeting me that she'd just reviewed my chart and had news: their "protocol" says they can't radiate after Paget's Disease. She told me why, but to tell the truth, I forget, and I had the impression she wasn't sure herself. It had something to do with the skin, but all I remember is that she remarked that the skin on my breast above the scar was quite good: soft, with a smooth appearance. What a strange thing is the mind, or at least this one: I'm such a compliment hound that I didn't retain the reason for not radiating, but do remember the random and totally irrelevant praise for the surface of the top half of my mutilated breast! Really astonishing.
Then came the bad part. She wanted me to know that since I won't have radiation, and the DCIS was close to the margins of the excision in two spots, I really should have a mastectomy, with or without reconstructive surgery. Dr. C. had warned me that she would say that. But here's the thing: this is what Dr. L, my oncologist said too (the "gold standard"). I asked for hard statistics: she said that would be difficult to come up with. So I asked my Big Question: how come Dr. C. says there is no survival advantage to mastectomy, when there's a greater risk of recurrence? This is what's confusing to me.
Her answer: My close margin indicates there could be DCIS left in my breast: Dr. C. said 10-20% chance of recurrence. DCIS, left untreated, will turn into invasive cancer half the time. So take the recurrence statistic and slice it by one half, because a recurrence of DCIS isn't a big deal. Then take the half that is invasive and say you most likely will catch it early and treat it with the usual stuff (mastectomy and chemo, if necessary). That will grab most of it. But a very small percentage of that will not be cured by the treatments and metastasize, threatening life, killing you sooner rather than later. That's the risk: a percentage of a percentage of a percentage. It's probably life-threatening to only a few, so statistically it doesn't show up when compared to a recurrence after mastectomy.
What's disturbing is that the pro-mastectomy gang clearly feel: why are you hesitating for a breast that's "asymmetrical in size" (as Dr. M. put it) and doesn't even have a nipple? Whereas Dr. C., the surgeon, spins it the other way: why not hold onto the breast and play such good odds?
Now what? I've progressed past Square One = Know Your Pathology, but I feel like I'm solidly back in Square Two = What To Do.
I was sort of hoping not to do it, actually: the idea of trooping an hour each way to the hospital for lengthy periods of time is pretty unthinkable right now. But then, who wouldn't want a boost to one's chances?
This idea was pretty much crushed when the radiologist Dr. M., who is doing the study of re-radiation I would have been part of, announced on meeting me that she'd just reviewed my chart and had news: their "protocol" says they can't radiate after Paget's Disease. She told me why, but to tell the truth, I forget, and I had the impression she wasn't sure herself. It had something to do with the skin, but all I remember is that she remarked that the skin on my breast above the scar was quite good: soft, with a smooth appearance. What a strange thing is the mind, or at least this one: I'm such a compliment hound that I didn't retain the reason for not radiating, but do remember the random and totally irrelevant praise for the surface of the top half of my mutilated breast! Really astonishing.
Then came the bad part. She wanted me to know that since I won't have radiation, and the DCIS was close to the margins of the excision in two spots, I really should have a mastectomy, with or without reconstructive surgery. Dr. C. had warned me that she would say that. But here's the thing: this is what Dr. L, my oncologist said too (the "gold standard"). I asked for hard statistics: she said that would be difficult to come up with. So I asked my Big Question: how come Dr. C. says there is no survival advantage to mastectomy, when there's a greater risk of recurrence? This is what's confusing to me.
Her answer: My close margin indicates there could be DCIS left in my breast: Dr. C. said 10-20% chance of recurrence. DCIS, left untreated, will turn into invasive cancer half the time. So take the recurrence statistic and slice it by one half, because a recurrence of DCIS isn't a big deal. Then take the half that is invasive and say you most likely will catch it early and treat it with the usual stuff (mastectomy and chemo, if necessary). That will grab most of it. But a very small percentage of that will not be cured by the treatments and metastasize, threatening life, killing you sooner rather than later. That's the risk: a percentage of a percentage of a percentage. It's probably life-threatening to only a few, so statistically it doesn't show up when compared to a recurrence after mastectomy.
What's disturbing is that the pro-mastectomy gang clearly feel: why are you hesitating for a breast that's "asymmetrical in size" (as Dr. M. put it) and doesn't even have a nipple? Whereas Dr. C., the surgeon, spins it the other way: why not hold onto the breast and play such good odds?
Now what? I've progressed past Square One = Know Your Pathology, but I feel like I'm solidly back in Square Two = What To Do.
Monday, March 14, 2011
One Order of Gratitude, Please
I sharply remember a moment soon after the diagnosis when I confronted the brutal possibility that this new cancer could be a death sentence for me. It was one of those Lifetime Movie Moments, when you go all Elizabeth Kubler-Ross and bargain : I'll do anything to live. If You (God, fate, the Universe, the cancer itself, those teenage boys in outer space who are using me as their avatar in their amusing video game) will only let me live, I will be grateful... So grateful that I will have a proper sense of perspective on all complaints about the woes of my life, the annoyances and sad absences and worries, the relatively minor discomforts of other ailments and such.
This seemed like such an epiphany that after the tests and pathology report came back with news so good that many patients would rejoice to hear it, I said to my friend, "You know, everyone should go through the interesting experience of thinking your life may be over." He kind of snorted, so I added, "That is, if it turns out it's not." This may be true. It certainly seemed true for a while.
Because here I am, 10 weeks or so past that moment of recognition about the larger perspective that cancer can bring, and I can tell you in all honesty that I cannot hold onto it. It's slipped out of my fingers like smoke and disappeared into the overwhelming desire -- need -- for the mind to orient itself to the normal and everyday. The truth is I am not any more grateful than I used to be, except in small moments when I shake myself and scold that I have got to stop bitching about the usual stuff (as on Valentine's Day, when being no one's Valentine seems particularly, if ridiculously, oppressive). I do not revel in the incredible excitement of just being alive, damn it...except for other small moments, when I actually do.
So much for all those books and movies and guests on talk shows telling us that they "now realize" something-or-other, which "saved" their miserable lives, and how that empowered them to never do Whatever again, which explains why they are So Happy now. I am here to say it has not worked for me. And I can't say I much want to try it again so I can get it right next time.
This seemed like such an epiphany that after the tests and pathology report came back with news so good that many patients would rejoice to hear it, I said to my friend, "You know, everyone should go through the interesting experience of thinking your life may be over." He kind of snorted, so I added, "That is, if it turns out it's not." This may be true. It certainly seemed true for a while.
Because here I am, 10 weeks or so past that moment of recognition about the larger perspective that cancer can bring, and I can tell you in all honesty that I cannot hold onto it. It's slipped out of my fingers like smoke and disappeared into the overwhelming desire -- need -- for the mind to orient itself to the normal and everyday. The truth is I am not any more grateful than I used to be, except in small moments when I shake myself and scold that I have got to stop bitching about the usual stuff (as on Valentine's Day, when being no one's Valentine seems particularly, if ridiculously, oppressive). I do not revel in the incredible excitement of just being alive, damn it...except for other small moments, when I actually do.
So much for all those books and movies and guests on talk shows telling us that they "now realize" something-or-other, which "saved" their miserable lives, and how that empowered them to never do Whatever again, which explains why they are So Happy now. I am here to say it has not worked for me. And I can't say I much want to try it again so I can get it right next time.
Wednesday, March 2, 2011
A Dream, It's Only a Dream...
The title quotes a song by Neil Young...if only. What I mean is that some corner has been turned in my heart, and I have returned to the probably deceptive feeling of normalcy, with its small cares and joys, that I had before the diagnosis two and a half months ago. I no longer feel in crisis, and while my brain tells me that I could be in danger of dying of a recurrence of breast cancer in the future, my mind (more plastic than the brain) says "La, la, la" sort of blithely and refuses to wrap itself around the statistics. Too many other items on the list of worries: will my students give me good evaluations? Will I finish the book, and will the editor laugh derisively when I do? What are the chances I can find the money sometime to help my daughter buy the house she so much wants? Is it possible to protect my five beloved grandchildren from future harm by worrying about them night and day? How do I program THREE reality shows on my DVR at the same time?
Yes, I think I do worry a bit more about my health in general than I used to, and I still do lament that I have some reasons for worry. Plus I'm seeing the radiologist on March 18th, and that should be blog-worthy, as I suspect I'll have to make yet another burdensome and anxiety-filled decision that will have an impact on my life and health. But in general I've returned to floating through the days, doing just enough to keep up with what must be done while never quite feeling I've done enough. In other words: regular life.
Yes, I think I do worry a bit more about my health in general than I used to, and I still do lament that I have some reasons for worry. Plus I'm seeing the radiologist on March 18th, and that should be blog-worthy, as I suspect I'll have to make yet another burdensome and anxiety-filled decision that will have an impact on my life and health. But in general I've returned to floating through the days, doing just enough to keep up with what must be done while never quite feeling I've done enough. In other words: regular life.
Tuesday, February 22, 2011
The Price of a Breast
Yesterday was my one month check-up with the dashing Dr. C., my surgeon. I was looking forward to this, as I was determined to pin him down on the question that seems to get talked around every time, including with my oncologist: if I don't have a mastectomy, how much more likely am I to die of breast cancer?
Thinking about it since I saw Dr. L, the oncologist, I realized that we had discussed odds of recurrence. Of course, this is salient too: no one wants to go through the wicked uncertainty and discomforts of the experience I just had, even if the results are, happily, a good prognosis. But the more important, the crucial question is simpler and razor-sharp: am I risking death by not having a mastectomy, and if so, by what odds?
Funny how difficult it was to put this question into the clearest and most direct phrasing. While I waited two and a half hours to get into the examining room (he was "backed up", as the receptionists say, which conjures constipation more than crowding), I tried out different versions till I settled on the one above. Meanwhile, patients all around me were tapping their feet, buttonholing staff, and generally in a bad mood about the interminable wait, especially one elderly Russian lady who had originally had a later appointment and had been shifted to a much earlier one, only to be taken an hour after the original time. As for me, I'm an old hand at this, so I know you have to come armed with very long books -- fortunately, I never run out of those I'm supposed to be reading for my job as college professor.
Dr. C. looked worn, and I felt for him: it was dark by the time I saw him, most of the staff had gone home, and there I was with my questions. First he looked at the breast in question, and he was pleased with himself: "It looks as good as any reconstructed breast would," he remarked with innocent pride; I felt like Galatea. "I have a question for you, and I'm going to be blunt," I said when he was done. "Go right ahead," he said generously. After all that mulling over phrasing, you'd think I would have gotten it right. But I only got half the question out when he interrupted me to say that yes, mastectomy is the standard procedure, and the radiologist I'm going to see will probably tell me the same thing as Dr. L, but he thinks it's okay to save the breast. I mentioned statistics for survival versus reccurence, but his answer was confusing, and he was in such a rush (poor man, I don't blame him) that there was no time to parse it out.
Basically what he seemed to say was that my chance of getting a life-threatening cancer (i.e. one that has advanced too far to "cure") is less after this surgery than it was eleven years ago, because this was DCIS. If I do get one, and the chances are low (I could not seem to get him to say how low, and I tried), it would be from the original cancer, not this one. On the other hand, the rate of recurrence from this one could be as high as 10-20% (!), though not life-threatening recurrence. If that happened, mastectomy would be necessary. In sum, he seemed to claim that studies did NOT show a survival advantage from mastectomy in my case, though it would have a recurrence advantage. And meanwhile, I get to keep my breast, such as it is.
And just to complicate matters, even mastectomy would not reduce the risk of either recurrence or survival to zero. Welcome to the wonderful world of cancer.
Which brings me to the question in the title: at what price do I get to have two more-or-less matching breasts? On what scales am I supposed to weigh all this? It's like playing poker for your house, your job, your life, while unable to see all your cards.
On the one hand, there are the odds, which is to say the studies and the statistics they proffer from which the odds are derived, that imply the risk is worth taking. Get into the car, book that trip, cross that street...it will probably be okay, so why not? On the other, there is the worth of that breast...a globule of soft fat (with some scar tissue thrown in and no nipple, in my case) that evens out the bra, the shirt, the bathing suit, the nightie. Why risk anything at all for this hunk of stuff? What's it worth?
I don't know, right now. That's the truth. I'm waiting for March 18th, when I finally get to see the radiologist. Maybe that will shed some clearer light on all this. I hope so. Because I'm flying blind.
Thinking about it since I saw Dr. L, the oncologist, I realized that we had discussed odds of recurrence. Of course, this is salient too: no one wants to go through the wicked uncertainty and discomforts of the experience I just had, even if the results are, happily, a good prognosis. But the more important, the crucial question is simpler and razor-sharp: am I risking death by not having a mastectomy, and if so, by what odds?
Funny how difficult it was to put this question into the clearest and most direct phrasing. While I waited two and a half hours to get into the examining room (he was "backed up", as the receptionists say, which conjures constipation more than crowding), I tried out different versions till I settled on the one above. Meanwhile, patients all around me were tapping their feet, buttonholing staff, and generally in a bad mood about the interminable wait, especially one elderly Russian lady who had originally had a later appointment and had been shifted to a much earlier one, only to be taken an hour after the original time. As for me, I'm an old hand at this, so I know you have to come armed with very long books -- fortunately, I never run out of those I'm supposed to be reading for my job as college professor.
Dr. C. looked worn, and I felt for him: it was dark by the time I saw him, most of the staff had gone home, and there I was with my questions. First he looked at the breast in question, and he was pleased with himself: "It looks as good as any reconstructed breast would," he remarked with innocent pride; I felt like Galatea. "I have a question for you, and I'm going to be blunt," I said when he was done. "Go right ahead," he said generously. After all that mulling over phrasing, you'd think I would have gotten it right. But I only got half the question out when he interrupted me to say that yes, mastectomy is the standard procedure, and the radiologist I'm going to see will probably tell me the same thing as Dr. L, but he thinks it's okay to save the breast. I mentioned statistics for survival versus reccurence, but his answer was confusing, and he was in such a rush (poor man, I don't blame him) that there was no time to parse it out.
Basically what he seemed to say was that my chance of getting a life-threatening cancer (i.e. one that has advanced too far to "cure") is less after this surgery than it was eleven years ago, because this was DCIS. If I do get one, and the chances are low (I could not seem to get him to say how low, and I tried), it would be from the original cancer, not this one. On the other hand, the rate of recurrence from this one could be as high as 10-20% (!), though not life-threatening recurrence. If that happened, mastectomy would be necessary. In sum, he seemed to claim that studies did NOT show a survival advantage from mastectomy in my case, though it would have a recurrence advantage. And meanwhile, I get to keep my breast, such as it is.
And just to complicate matters, even mastectomy would not reduce the risk of either recurrence or survival to zero. Welcome to the wonderful world of cancer.
Which brings me to the question in the title: at what price do I get to have two more-or-less matching breasts? On what scales am I supposed to weigh all this? It's like playing poker for your house, your job, your life, while unable to see all your cards.
On the one hand, there are the odds, which is to say the studies and the statistics they proffer from which the odds are derived, that imply the risk is worth taking. Get into the car, book that trip, cross that street...it will probably be okay, so why not? On the other, there is the worth of that breast...a globule of soft fat (with some scar tissue thrown in and no nipple, in my case) that evens out the bra, the shirt, the bathing suit, the nightie. Why risk anything at all for this hunk of stuff? What's it worth?
I don't know, right now. That's the truth. I'm waiting for March 18th, when I finally get to see the radiologist. Maybe that will shed some clearer light on all this. I hope so. Because I'm flying blind.
Tuesday, February 15, 2011
Doctor, Doctor, Give Me the News
In a perfect world, when there's something wrong, an expert is there to diagnose it and fix it: and so in medicine, A (illness) leads to B (diagnosis) leads to C (cure). I suspect we all have that in our heads somewhere; it's just a question of finding the right doctor, like finding the right person to marry.
My dear old-world mother, who revered doctors as much as any self-respecting Jewish immigrant, would relate in reverent tones, "And she's seeing a big shot on Park Avenue". We never saw Big Shots, Park Ave or otherwise, because there was no money. We saw sweet Dr. Leban, who had wire-rimmed glasses, never asked questions, and came to our house to deliver a "shot" in the butt to anyone lying on the living room couch with the flu, for which he was paid in cash. Before she could afford that, she took subways and buses to Coney Island Hospital on a regular basis to treat my older brother's asthma in the Emergency Room, as so many poor people still do today.
But I was socially and economically mobile, as she intended me to be, and when I was a married lady with a child in my late twenties, I acquired an actual doctor on Park Avenue. It's not that we had a lot of money; my husband was a lowly Assistant Professor at a public university, and I was a graduate student. But I'd suffered from a misdiagnosis (in an Emergency Room) of an ectopic pregnancy and had to have emergency surgery to save my life. Afterward, the idea was to get nothing-but-the-best, and so I found myself a patient of Dr. Z, a portly (to put it nicely), chain-smoking OB-GYN with a lavish office and a long wait to get in to see him. Dr. Z. had an excellent rep -- yes, a Big Shot -- and you could tell he was beloved by his patients because pretty photos of the babies he delivered adorned the walls of his waiting room, along with gushing letters along the lines of "Dr. Z, we love you JUST BECAUSE YOU'RE YOU!" My friend DK will testify that I'm not making this up.
Anyway, when I entered my forties, an odd thing happened: unexpectedly, my periods stopped coming regularly, and then, at age 44 or so, not at all. It seemed too early for menopause, but that's what it was, apparently. Dr. Z. said not to worry; he had just the thing. All I had to do was take this prescription for HRT -- hormone replacement therapy, a combination of estrogen and progesterone -- and I would not only avoid the symptoms of menopause (none of which I actually had), but it would be good for me in every way. I remember something about prevention of heart disease and dementia, not to mention looking and feeling young till I was 120 or thereabouts.
Cut to age 53, when I'd been taking this little pill daily for nine years. That's when I was diagnosed with breast cancer, and before I knew it, it was all over the paper: major studies had shown that taking HRT for more than five years was definitely correlated with a higher risk of breast cancer (it's now known to be even worse than that). I had an estrogen-positive tumor, too, meaning this cancer was fed by estrogen. This was appalling, but how could I be mad at Dr. Z? It wasn't his fault, right? That was the wisdom of the day. However, I remember that while I was taking HRT, an aunt once told me her female doctor, who tended to be skeptical about pharmacology, advised her not to take HRT and she had done without it. I remember thinking this was wacky; Dr. Z. was, after all...a Big Shot. On Park Avenue.
The reason I'm thinking about this is that The New York Times ran an article the other day about a new study showing that lymph node resection does not prolong survival for breast cancer patients. Oh. No kidding. Really? Because eleven years ago, when I had my first surgery for invasive cancer, the sentinel node (the one nearest the tumor and thus most likely to be malignant if any are) was removed and found cancerous. So I had another surgery, excising more tissue, and also had twenty or so more lymph nodes taken from under my arm, hunting for the supposedly all-important number of malignant nodes that would tell us about my prognosis. There were no more, so the flesh cut from my underarm and the numbness in the area that makes it a torment to scratch an itch there were for nothing (actually I was very lucky not to get lymphedema, possibly thanks to the skill of the famous Dr. C, my once and future surgeon).
So now you tell me that this wasn't necessary. It didn't prolong my life. It didn't do much at all, except cause more pain after surgery and a deformity in my underarm.
Plus Dr. Leban's shot of antibiotic (though for all I know, it could have been saline) almost certainly didn't help us get over the flu.
This does not raise my level of faith, hope and trust in the medical field, dear reader. I suppose that is the way medicine works, yes. Except that there is a class action suit against the pharmaceutical company that produced the drug I took, because, according to a lawyer who works exclusively on the suit, the drug company suppressed evidence of a suspected estrogen-cancer link long before the study that exposed it. I won't see any of the money, though, if the suit is successful, because I didn't learn about it until it was too late to sue. Put that in your pipe and smoke it. Or rather, don't smoke at all, unless you trust what the tobacco companies were telling you.
My dear old-world mother, who revered doctors as much as any self-respecting Jewish immigrant, would relate in reverent tones, "And she's seeing a big shot on Park Avenue". We never saw Big Shots, Park Ave or otherwise, because there was no money. We saw sweet Dr. Leban, who had wire-rimmed glasses, never asked questions, and came to our house to deliver a "shot" in the butt to anyone lying on the living room couch with the flu, for which he was paid in cash. Before she could afford that, she took subways and buses to Coney Island Hospital on a regular basis to treat my older brother's asthma in the Emergency Room, as so many poor people still do today.
But I was socially and economically mobile, as she intended me to be, and when I was a married lady with a child in my late twenties, I acquired an actual doctor on Park Avenue. It's not that we had a lot of money; my husband was a lowly Assistant Professor at a public university, and I was a graduate student. But I'd suffered from a misdiagnosis (in an Emergency Room) of an ectopic pregnancy and had to have emergency surgery to save my life. Afterward, the idea was to get nothing-but-the-best, and so I found myself a patient of Dr. Z, a portly (to put it nicely), chain-smoking OB-GYN with a lavish office and a long wait to get in to see him. Dr. Z. had an excellent rep -- yes, a Big Shot -- and you could tell he was beloved by his patients because pretty photos of the babies he delivered adorned the walls of his waiting room, along with gushing letters along the lines of "Dr. Z, we love you JUST BECAUSE YOU'RE YOU!" My friend DK will testify that I'm not making this up.
Anyway, when I entered my forties, an odd thing happened: unexpectedly, my periods stopped coming regularly, and then, at age 44 or so, not at all. It seemed too early for menopause, but that's what it was, apparently. Dr. Z. said not to worry; he had just the thing. All I had to do was take this prescription for HRT -- hormone replacement therapy, a combination of estrogen and progesterone -- and I would not only avoid the symptoms of menopause (none of which I actually had), but it would be good for me in every way. I remember something about prevention of heart disease and dementia, not to mention looking and feeling young till I was 120 or thereabouts.
Cut to age 53, when I'd been taking this little pill daily for nine years. That's when I was diagnosed with breast cancer, and before I knew it, it was all over the paper: major studies had shown that taking HRT for more than five years was definitely correlated with a higher risk of breast cancer (it's now known to be even worse than that). I had an estrogen-positive tumor, too, meaning this cancer was fed by estrogen. This was appalling, but how could I be mad at Dr. Z? It wasn't his fault, right? That was the wisdom of the day. However, I remember that while I was taking HRT, an aunt once told me her female doctor, who tended to be skeptical about pharmacology, advised her not to take HRT and she had done without it. I remember thinking this was wacky; Dr. Z. was, after all...a Big Shot. On Park Avenue.
The reason I'm thinking about this is that The New York Times ran an article the other day about a new study showing that lymph node resection does not prolong survival for breast cancer patients. Oh. No kidding. Really? Because eleven years ago, when I had my first surgery for invasive cancer, the sentinel node (the one nearest the tumor and thus most likely to be malignant if any are) was removed and found cancerous. So I had another surgery, excising more tissue, and also had twenty or so more lymph nodes taken from under my arm, hunting for the supposedly all-important number of malignant nodes that would tell us about my prognosis. There were no more, so the flesh cut from my underarm and the numbness in the area that makes it a torment to scratch an itch there were for nothing (actually I was very lucky not to get lymphedema, possibly thanks to the skill of the famous Dr. C, my once and future surgeon).
So now you tell me that this wasn't necessary. It didn't prolong my life. It didn't do much at all, except cause more pain after surgery and a deformity in my underarm.
Plus Dr. Leban's shot of antibiotic (though for all I know, it could have been saline) almost certainly didn't help us get over the flu.
This does not raise my level of faith, hope and trust in the medical field, dear reader. I suppose that is the way medicine works, yes. Except that there is a class action suit against the pharmaceutical company that produced the drug I took, because, according to a lawyer who works exclusively on the suit, the drug company suppressed evidence of a suspected estrogen-cancer link long before the study that exposed it. I won't see any of the money, though, if the suit is successful, because I didn't learn about it until it was too late to sue. Put that in your pipe and smoke it. Or rather, don't smoke at all, unless you trust what the tobacco companies were telling you.
Thursday, February 10, 2011
Gratifying, Frustrating
I was glad to see my old oncologist, Dr. L, today, partly because I really like her, and partly because I had many questions that my surgeon either didn't want to or cannot answer.
And I did get some answers and learned one or two interesting new facts, which was gratifying. But I didn't find out what I most wanted to know, which was frustrating (yes, thus the title). And there was an awkward moment at which I teared up and she actually apologized for what she'd said. More about that in a moment. First, the answers:
1. Was this a recurrence or a new cancer? Supposedly an recurrence is more dangerous because it means the original cancer cells haven't been eradicated, so I'd like to know. The surgeon was quite vague and seemed uninterested in the question; Dr. L, on the other hand, appeared to give two contradictory answers at different points. First she said that my original invasive cancer eleven years ago had been estrogen-positive, and that recurrences of estrogen-positive tumors tend to peak twice (as opposed to estrgoen-negative ones): the first peak is 2-4 years after, the second around ten years. "So I'm right on the second peak?" I said, amazed because I had never heard this nugget of info before (why? did no one want to tell me to avoid alarming me?). "Yes", she said. So that implies recurrence, right? But later she said it wasn't a recurrence, because it was DCIS rather than invasive, and apparently the surgery, chemo and radiation did wipe out the original invasive cancer. This is confusing. Is the 11 year gap from diagnosis just a coincidence?
2. Why were the mammogram and the MRI just after the diagnosis of Paget's both normal, when the path report showed DCIS? Answer: Because I didn't have enough DCIS to show up on the imaging. "After all, the amount you had was minimal," she said. It WAS? No one had told me that, not even the surgeon. I read the path report, and the word "minimal" isn't on there. "No," she said, "But it says 'a few foci of DCIS found', and that means it's not extensive." So that's good, going on great. But you'd think I would have been told that before.
3. What about the dread "dirty margin"? Dr L said I didn't actually have a "dirty" margin, which means cancer found ON the margin of the excision. I didn't know that either. What I had was a close margin, half a millimeter from the incision. Is that as good as a greater margin? No. The bigger the better. But it doesn't necessarily mean an automatic re-excision either. It's a judgement call, as so much else in cancer treatment seems to be. She did add that the path report says only "one of five slides shows DCIS .5 mm from the margin" -- I'd read that but didn't know that one of five is not considered much at all. What do I know?
4. Hormone treatment: shouldn't I go back on it, given that I was diagnosed with the Paget's one year after finishing my course of estrogen inhibiting drugs? Hmm, she said. Hard to say, she said. There's a study being done now about extending hormone treatment for women like you, but we won't have the results for three years. And if it does no good, you run the risk of osteoporosis, higher cholesterol, and possible heart damage for no reason. So she will consult with other oncologists and get back to me in a few days with their collective decision. Apparently majority rules. Another judgement call.
5. Radiation: this isn't up to her. There's no question that radiation prevents further recurrences after lumpectomies, but the standard is not to re-radiate an already treated breast. "The breast tissue usually can't withstand it at the levels needed to eradicate cancer," she said. Nevertheless, I'm to see the radiologist in about a month: she said the one my surgeon recommended is their best expert on this, so that's nice.
6. My prognosis: this is where we ran into trouble..my tearing up, her apology. She repeated several times that the "cure rate" for DCIS is 98%, which is wonderful, but then added that this is after lumpectomy and radiation -- in other words, for first timers..."So if you can't do radiation, you should rethink getting a mastectomy, because that's the gold standard." NOW? I thought. I'm just beginning to come out on the other side of this surgery, which after all was minimal compared to mastectomy (not to mention breast reconstruction, which I hear is even more painful). Am I going to up the ante now? She saw that I was getting upset, and quickly apologized: "Wait, I misspoke," she said, "Decisions about surgery have to be made in consultation with the surgeon. That's not my call. It's just that it's the gold standard."
Ah, the gold standard! Who wouldn't want the gold standard? Why take silver or bronze medals when you can Go for the Gold? The feeling that I am being cowardly because I hate surgery and want to look normal is distressing; the idea of risk, even a small risk, is dismaying. On the other hand, I really, really don't want a mastectomy right now. I don't like making this decision myself, but I also don't know that I trust Dr. L. OR Dr. C. (the surgeon) or anyone to make the right choice. It all seems so much a matter of luck, a cost-benefit analysis based on unknowns. This is the weird and frustrating part. The answer to every question seems to be "hard to say".
And I did get some answers and learned one or two interesting new facts, which was gratifying. But I didn't find out what I most wanted to know, which was frustrating (yes, thus the title). And there was an awkward moment at which I teared up and she actually apologized for what she'd said. More about that in a moment. First, the answers:
1. Was this a recurrence or a new cancer? Supposedly an recurrence is more dangerous because it means the original cancer cells haven't been eradicated, so I'd like to know. The surgeon was quite vague and seemed uninterested in the question; Dr. L, on the other hand, appeared to give two contradictory answers at different points. First she said that my original invasive cancer eleven years ago had been estrogen-positive, and that recurrences of estrogen-positive tumors tend to peak twice (as opposed to estrgoen-negative ones): the first peak is 2-4 years after, the second around ten years. "So I'm right on the second peak?" I said, amazed because I had never heard this nugget of info before (why? did no one want to tell me to avoid alarming me?). "Yes", she said. So that implies recurrence, right? But later she said it wasn't a recurrence, because it was DCIS rather than invasive, and apparently the surgery, chemo and radiation did wipe out the original invasive cancer. This is confusing. Is the 11 year gap from diagnosis just a coincidence?
2. Why were the mammogram and the MRI just after the diagnosis of Paget's both normal, when the path report showed DCIS? Answer: Because I didn't have enough DCIS to show up on the imaging. "After all, the amount you had was minimal," she said. It WAS? No one had told me that, not even the surgeon. I read the path report, and the word "minimal" isn't on there. "No," she said, "But it says 'a few foci of DCIS found', and that means it's not extensive." So that's good, going on great. But you'd think I would have been told that before.
3. What about the dread "dirty margin"? Dr L said I didn't actually have a "dirty" margin, which means cancer found ON the margin of the excision. I didn't know that either. What I had was a close margin, half a millimeter from the incision. Is that as good as a greater margin? No. The bigger the better. But it doesn't necessarily mean an automatic re-excision either. It's a judgement call, as so much else in cancer treatment seems to be. She did add that the path report says only "one of five slides shows DCIS .5 mm from the margin" -- I'd read that but didn't know that one of five is not considered much at all. What do I know?
4. Hormone treatment: shouldn't I go back on it, given that I was diagnosed with the Paget's one year after finishing my course of estrogen inhibiting drugs? Hmm, she said. Hard to say, she said. There's a study being done now about extending hormone treatment for women like you, but we won't have the results for three years. And if it does no good, you run the risk of osteoporosis, higher cholesterol, and possible heart damage for no reason. So she will consult with other oncologists and get back to me in a few days with their collective decision. Apparently majority rules. Another judgement call.
5. Radiation: this isn't up to her. There's no question that radiation prevents further recurrences after lumpectomies, but the standard is not to re-radiate an already treated breast. "The breast tissue usually can't withstand it at the levels needed to eradicate cancer," she said. Nevertheless, I'm to see the radiologist in about a month: she said the one my surgeon recommended is their best expert on this, so that's nice.
6. My prognosis: this is where we ran into trouble..my tearing up, her apology. She repeated several times that the "cure rate" for DCIS is 98%, which is wonderful, but then added that this is after lumpectomy and radiation -- in other words, for first timers..."So if you can't do radiation, you should rethink getting a mastectomy, because that's the gold standard." NOW? I thought. I'm just beginning to come out on the other side of this surgery, which after all was minimal compared to mastectomy (not to mention breast reconstruction, which I hear is even more painful). Am I going to up the ante now? She saw that I was getting upset, and quickly apologized: "Wait, I misspoke," she said, "Decisions about surgery have to be made in consultation with the surgeon. That's not my call. It's just that it's the gold standard."
Ah, the gold standard! Who wouldn't want the gold standard? Why take silver or bronze medals when you can Go for the Gold? The feeling that I am being cowardly because I hate surgery and want to look normal is distressing; the idea of risk, even a small risk, is dismaying. On the other hand, I really, really don't want a mastectomy right now. I don't like making this decision myself, but I also don't know that I trust Dr. L. OR Dr. C. (the surgeon) or anyone to make the right choice. It all seems so much a matter of luck, a cost-benefit analysis based on unknowns. This is the weird and frustrating part. The answer to every question seems to be "hard to say".
Wednesday, February 9, 2011
There's Nothing Like the Right Bra, Baby
It should be a song. Because just as all men are not alike, and all boobs are not alike, some bras just make you look and feel better than others.
It's not only small vs. large-breasted women, though; it's women who have been through the cancer mill and come out with one or more boobs that don't look the way they did...and yes, the way they should, in some boob-utopia of the mind. I've been twisting and turning in that mill-of-the-mind for weeks now, waiting and hoping that the poor beaten-up boob will return to "normal" or some semblance of it, and slowly realizing -- not. It's not what it used to be, and probably never will be, and I'd better get used to it, and I'd better be grateful for however long I get to hang on to it (so to speak) at all, and do what I can.
As soon as I returned to work, I went back to wearing my bras. But it was a disaster unless I wore the loosest, maternity-like sweater and crossed my arms a lot. This made me so sad I obsessed about it during a few sleepless nights. Would I have to ditch my entire wardrobe,really? And no more cleavage, ever again?
Then one day I idly found a chat room on breastcancer.org and cyber-spoke to the ladies who happened to be on at the same time. I don't much like real-time chat, but they were great, a true example of people who help each other for the sheer comfort and pleasure of doing so. My thought at the time was that I would buy inserts (like falsies) to put on one side, and didn't know where to get them. The Ladies Online immediately gave me a link, and I bought some. But when they came, they didn't look the way I hoped, and they didn't help with the discomfort I felt when I wore my usual underwire bras. I think it was my daughter A. who advised me to go to a bra fitting store and get a special bra instead.
I was reluctant but willing to try, dreading the process and the results. No one had seen the breast naked except for medical personnel, and I didn't look forward to awkwardness and suppressed embarrassment. So I rehearsed what I'd say when I went into the Town Shop: "I'd like someone to help with fitting a bra, but I have a special situation. I had breast surgery recently." Oddly, I never got to the second sentence, because at the sound of "special situation," a young woman was called from where she was lurking at the back. I told her the deal and she just said sweetly, "OK, let's see." I took off the bulky sweater and bra, and then I knew she'd seen it and probably a lot worse many times before. "Wait here," she said cheerfully, and then came back with just the right bra. It wasn't a mastectomy bra or a modified regular bra, just an actual bra that doesn't have underwire to cut into my incision..instead it has double stitching and support and is shaped in such a way that when it's on, it's really not possible to tell that anything is different -- unless you're staring directly at my boobs, in which case why are you?
I could have kissed her. She was so unimpressed with my freakishness that I felt less freakish. And when I left the store she had also provided me with a lighter and looser version for sleeping (at least till I heal). Plus they weren't very expensive, as I'd expected. And since then I've worn just about any damn thing I feel like. So there. Thank you, Imperturbable Young Lady from the Town Shop, and thanks to the wonder we call The Bra.
Tomorrow is my important first visit with my old oncologist, Dr. L.
It's not only small vs. large-breasted women, though; it's women who have been through the cancer mill and come out with one or more boobs that don't look the way they did...and yes, the way they should, in some boob-utopia of the mind. I've been twisting and turning in that mill-of-the-mind for weeks now, waiting and hoping that the poor beaten-up boob will return to "normal" or some semblance of it, and slowly realizing -- not. It's not what it used to be, and probably never will be, and I'd better get used to it, and I'd better be grateful for however long I get to hang on to it (so to speak) at all, and do what I can.
As soon as I returned to work, I went back to wearing my bras. But it was a disaster unless I wore the loosest, maternity-like sweater and crossed my arms a lot. This made me so sad I obsessed about it during a few sleepless nights. Would I have to ditch my entire wardrobe,really? And no more cleavage, ever again?
Then one day I idly found a chat room on breastcancer.org and cyber-spoke to the ladies who happened to be on at the same time. I don't much like real-time chat, but they were great, a true example of people who help each other for the sheer comfort and pleasure of doing so. My thought at the time was that I would buy inserts (like falsies) to put on one side, and didn't know where to get them. The Ladies Online immediately gave me a link, and I bought some. But when they came, they didn't look the way I hoped, and they didn't help with the discomfort I felt when I wore my usual underwire bras. I think it was my daughter A. who advised me to go to a bra fitting store and get a special bra instead.
I was reluctant but willing to try, dreading the process and the results. No one had seen the breast naked except for medical personnel, and I didn't look forward to awkwardness and suppressed embarrassment. So I rehearsed what I'd say when I went into the Town Shop: "I'd like someone to help with fitting a bra, but I have a special situation. I had breast surgery recently." Oddly, I never got to the second sentence, because at the sound of "special situation," a young woman was called from where she was lurking at the back. I told her the deal and she just said sweetly, "OK, let's see." I took off the bulky sweater and bra, and then I knew she'd seen it and probably a lot worse many times before. "Wait here," she said cheerfully, and then came back with just the right bra. It wasn't a mastectomy bra or a modified regular bra, just an actual bra that doesn't have underwire to cut into my incision..instead it has double stitching and support and is shaped in such a way that when it's on, it's really not possible to tell that anything is different -- unless you're staring directly at my boobs, in which case why are you?
I could have kissed her. She was so unimpressed with my freakishness that I felt less freakish. And when I left the store she had also provided me with a lighter and looser version for sleeping (at least till I heal). Plus they weren't very expensive, as I'd expected. And since then I've worn just about any damn thing I feel like. So there. Thank you, Imperturbable Young Lady from the Town Shop, and thanks to the wonder we call The Bra.
Tomorrow is my important first visit with my old oncologist, Dr. L.
Friday, February 4, 2011
Telling
Rereading the last post, I'm aware that I am feeling quite a bit better than when I wrote that five days ago (probably if I weren't, I would have posted more here!). There's no question that work is a wonderful antidote to these feelings: I'm busy as a bee, and it feels great to be up and about, surrounded by people, doing what I feel I'm good at, and making decent money by doing it.
An odd question has come up: whom do I tell about the cancer and to whom do I pretend that nothing has happened? Now that the first level of family, friends, and key superiors at work know (the latter in case I had to take time off), it seems odd to answer the innocent (and usually meaningless) question, "How was your vacation?" I'm constantly tempted to say, "Fine, if you don't count surgery for breast cancer." You can't just say "Lousy", because then you're expected to provide an explanation. So either I tell them the truth, or I say, "Okay, thanks, and yours?". I've never been able to say things I don't mean with ease, so the bland social response feels uncomfortable to me. But at this point telling Tom, Dick and Harry what happened also feels uncomfortable...like I'm begging for sympathy. And what can they say? "Oh, I'm so sorry." "Yeah, thank you..." I'd reply. Not satisfying to me, and probably embarrassing to them. This is probably why I told almost no one at work when my mother died years ago. I'm weird that way: either oversharing or undersharing compared to other people.
Still in a distressing amount of physical discomfort, hard to describe. There are occasional flashes of pain in the breast, but that's not the problem. It's more like a constant, tight, heavy, stinging feeling that I can't forget about and that's not relieved with OTC medication or ice or heat. Maybe it will go away, but it hasn't changed that much in a couple of weeks.
This Thurs. I have an important appointment to see my old oncologist, Dr. L. (randomly, she may be the only black female oncologist on the staff). I have lots of questions for her: WTF? is pretty much the first one. Why didn't the MRI pick up the DCIS and the extent of it? is the second. Does this mean that even MRIs don't see all that's in there, that there could be a lot more that the surgery didn't get? Then I definitely want to know what she thinks about the surgeon's decision not to operate further in spite of the "dirty" margin. And the question of radiation, and the possibility of further hormone treatment...and so on. I should take a tape recorder with me. Maybe a human one.
An odd question has come up: whom do I tell about the cancer and to whom do I pretend that nothing has happened? Now that the first level of family, friends, and key superiors at work know (the latter in case I had to take time off), it seems odd to answer the innocent (and usually meaningless) question, "How was your vacation?" I'm constantly tempted to say, "Fine, if you don't count surgery for breast cancer." You can't just say "Lousy", because then you're expected to provide an explanation. So either I tell them the truth, or I say, "Okay, thanks, and yours?". I've never been able to say things I don't mean with ease, so the bland social response feels uncomfortable to me. But at this point telling Tom, Dick and Harry what happened also feels uncomfortable...like I'm begging for sympathy. And what can they say? "Oh, I'm so sorry." "Yeah, thank you..." I'd reply. Not satisfying to me, and probably embarrassing to them. This is probably why I told almost no one at work when my mother died years ago. I'm weird that way: either oversharing or undersharing compared to other people.
Still in a distressing amount of physical discomfort, hard to describe. There are occasional flashes of pain in the breast, but that's not the problem. It's more like a constant, tight, heavy, stinging feeling that I can't forget about and that's not relieved with OTC medication or ice or heat. Maybe it will go away, but it hasn't changed that much in a couple of weeks.
This Thurs. I have an important appointment to see my old oncologist, Dr. L. (randomly, she may be the only black female oncologist on the staff). I have lots of questions for her: WTF? is pretty much the first one. Why didn't the MRI pick up the DCIS and the extent of it? is the second. Does this mean that even MRIs don't see all that's in there, that there could be a lot more that the surgery didn't get? Then I definitely want to know what she thinks about the surgeon's decision not to operate further in spite of the "dirty" margin. And the question of radiation, and the possibility of further hormone treatment...and so on. I should take a tape recorder with me. Maybe a human one.
Monday, January 31, 2011
I Continue Down
Today I find myself more down than when I last wrote here. Why now, when my prognosis suddenly seems so good? I am being ungrateful, especially when I think of those who are diagnosed at Stage 4 and must hold onto every year as a blessing. So what's wrong with me?
Yes, I feel as though a bullet chased me down the street and I improbably managed to duck. But that in itself makes me feel unsafe, like walking in a bad neighborhood and waiting to be stabbed. Also, transitioning out of crisis mode has freed me to think of lesser problems that had to be put aside before. It must be that way when soldiers finish a battle: then they realize they're cold and wet and hungry.
I have said over and over that I "just want to get back to normal", to "resume" my life. And on the surface, I have. I'm working again, and starting to write the book again, and have begun to be able to talk about other matters besides cancer when I see family and friends. All that is undeniably good. But in another way, I don't feel normal, and it doesn't feel that I've just turned back the clock or put the train back on the track after a temporary derailment. I think I felt that way after the first cancer, once chemo was over. I actually may be more shaken now than I was then! Really, twice around feels like too much, especially when I look about me and see that most people never get on this merry-go-round even once.
My mood may be partly because I find I am still in pain..or call it discomfort. It had gotten so much better by a week after surgery that I pretty much thought I'd be fine by now, two weeks later, and instead it seems to be taking its sweet time to go away. So I'm conscious of that body part all day (and when I'm not asleep at night) in a very unpleasant way.
Then too, I'm mentally in a state of discomfort, conscious of some deep alteration that feels more disturbing than the cancer I had eleven years ago. I didn't feel monstrous after those surgeries, and I sort of do now. It's not just the lack of nipple...that doesn't bother me as much as the whole appearance of the thing. And I do think of that poor battered and mutilated breast as a "Thing", sadly enough. Yesterday and today I couldn't stop wondering if any of my clothes will look okay, and that I will surely need to ditch my tank tops and bathing suits. I can't tell you how bad that unimportant idea makes me feel. It's very odd.
I had a dream last night: I was cutting the arms off very small dolls. That is, they seemed like dolls, but they were alive. I wasn't being violent and I wasn't enjoying it at all: I was doing it for their own good. Gee, where do you think that came from?
As I said, kind of feeling down.
Yes, I feel as though a bullet chased me down the street and I improbably managed to duck. But that in itself makes me feel unsafe, like walking in a bad neighborhood and waiting to be stabbed. Also, transitioning out of crisis mode has freed me to think of lesser problems that had to be put aside before. It must be that way when soldiers finish a battle: then they realize they're cold and wet and hungry.
I have said over and over that I "just want to get back to normal", to "resume" my life. And on the surface, I have. I'm working again, and starting to write the book again, and have begun to be able to talk about other matters besides cancer when I see family and friends. All that is undeniably good. But in another way, I don't feel normal, and it doesn't feel that I've just turned back the clock or put the train back on the track after a temporary derailment. I think I felt that way after the first cancer, once chemo was over. I actually may be more shaken now than I was then! Really, twice around feels like too much, especially when I look about me and see that most people never get on this merry-go-round even once.
My mood may be partly because I find I am still in pain..or call it discomfort. It had gotten so much better by a week after surgery that I pretty much thought I'd be fine by now, two weeks later, and instead it seems to be taking its sweet time to go away. So I'm conscious of that body part all day (and when I'm not asleep at night) in a very unpleasant way.
Then too, I'm mentally in a state of discomfort, conscious of some deep alteration that feels more disturbing than the cancer I had eleven years ago. I didn't feel monstrous after those surgeries, and I sort of do now. It's not just the lack of nipple...that doesn't bother me as much as the whole appearance of the thing. And I do think of that poor battered and mutilated breast as a "Thing", sadly enough. Yesterday and today I couldn't stop wondering if any of my clothes will look okay, and that I will surely need to ditch my tank tops and bathing suits. I can't tell you how bad that unimportant idea makes me feel. It's very odd.
I had a dream last night: I was cutting the arms off very small dolls. That is, they seemed like dolls, but they were alive. I wasn't being violent and I wasn't enjoying it at all: I was doing it for their own good. Gee, where do you think that came from?
As I said, kind of feeling down.
Saturday, January 29, 2011
The Path Report, At Last
I did decide, after all, to call every day to see if the pathology report was ready. This shows, I guess, that when I have a conscious choice to know the truth, I will choose to know, whereas unconsciously I have sometimes been a champion denier about my own life. (The prime example that leaps to mind is the belief I cultivated for many years that my marriage was a happy one.)
As for the path report, which was supposed to take the classic 7-10 days, I was told it was "not available" on Day Seven or Eight, and Day Nine, the snowstorm hit New York and the doctor's line didn't get answered at all. So that brought me to Day Ten, when I had my post-op check-up with Dr. C, the surgeon, anyway.
Anxiety built during those last three days, I'll admit. My fantasy was that the report was in, but was so bad the doctor wanted to give me the news in person (even though I was told all the bad news over the phone at the time of the first, invasive cancer, from the same doctor's office). Fortunately, I didn't really believe this -- I do know I'm susceptible to this kind of "What if"-ing. But when Dr. C. strode cheerfully into the examining room on Friday morning and greeted me with, "Hello! How are you feeling today?" I wanted to yell, "Cut the crap and tell me how the path report was, please!"
I'm well-behaved and didn't, and right after, he said, "Well, the path report was good..." -- "It WAS?" I cried, but he went on, "But I do need to go over it with you." Never a good sign.
First we admired his handiwork, which really is quite amazing (more on that another time), and then he showed me the detailed report. The good (going on fabulous) part: no invasive cancer found, DCIS (ductal carcinoma in situ, which means localized) only. The not-so-great part: three margins were nice and clean, but one showed a little bit of DCIS half a millimeter from the margin of the incision. "Clean" margins, the ideal, are more than a millimeter (which is damn small, if you look at a ruler). The point of clean margins is that the chances of having missed a patch of cancer cells is better. His comment: "Some of my colleagues who are conservative would say this requires re-excision [i.e. another surgery to take more tissue, as I had eleven years ago], but my judgement is that it's a low enough risk that we can stop where we are and just monitor it."
Oh. That was deflating, and a little scary. I wasn't sure how scary, so confusing, too.
He went on to discuss the possibility of radiation ("This hospital has been experimenting with re-radiating the same breast but the benefit seems very small, so let's set up a consultation with a radiologist for you to discuss the benefits and side effect"). I asked about going back on hormone therapy, and he thought my old oncologist should decide that. I was given three more appointments in the next month -- radiologist, oncologist, and another check of the incision by Dr. C -- and sent home.
Calling my family to tell the good news was excellent. But I didn't tell my children about the "dirty margin" (as they call it), though it's always tempting to share every single feeling with them. Dr. C. said the risk of recurrence was low, so why trouble them with this vague possibility if I'm not going to have more surgery? And it gave me such pleasure to hear their excited voices when I told them the report was good.
On the other hand, while the percentage of recurrences is low (I think he said 3%), the percentage was also low for getting a recurrence eleven years ago, not to mention for getting Paget's Disease (only 2-5% of breast cancers), or even getting breast cancer at all (I'm the only one among my friends who has had invasive cancer). Here I'd been hanging all week on Good (a fine path report) or Terrible (a bad one), and this leaves me with more mixed feelings than I thought I'd have. I've noticed life is like that so often: just when you think it's a drama of Yes or No, Good or Bad, What I Want or Don't Want, it turns out to be more complex than that, no simple denouement.
And so this morning I woke up feeling down for the first time in quite a while...how odd that in the last weeks of anticipating surgery and the path report, I have been very anxious but quite cheerful, not depressed at all...I suppose because something was always happening next, and there was always the hope that good news would make it all go away.
As for the path report, which was supposed to take the classic 7-10 days, I was told it was "not available" on Day Seven or Eight, and Day Nine, the snowstorm hit New York and the doctor's line didn't get answered at all. So that brought me to Day Ten, when I had my post-op check-up with Dr. C, the surgeon, anyway.
Anxiety built during those last three days, I'll admit. My fantasy was that the report was in, but was so bad the doctor wanted to give me the news in person (even though I was told all the bad news over the phone at the time of the first, invasive cancer, from the same doctor's office). Fortunately, I didn't really believe this -- I do know I'm susceptible to this kind of "What if"-ing. But when Dr. C. strode cheerfully into the examining room on Friday morning and greeted me with, "Hello! How are you feeling today?" I wanted to yell, "Cut the crap and tell me how the path report was, please!"
I'm well-behaved and didn't, and right after, he said, "Well, the path report was good..." -- "It WAS?" I cried, but he went on, "But I do need to go over it with you." Never a good sign.
First we admired his handiwork, which really is quite amazing (more on that another time), and then he showed me the detailed report. The good (going on fabulous) part: no invasive cancer found, DCIS (ductal carcinoma in situ, which means localized) only. The not-so-great part: three margins were nice and clean, but one showed a little bit of DCIS half a millimeter from the margin of the incision. "Clean" margins, the ideal, are more than a millimeter (which is damn small, if you look at a ruler). The point of clean margins is that the chances of having missed a patch of cancer cells is better. His comment: "Some of my colleagues who are conservative would say this requires re-excision [i.e. another surgery to take more tissue, as I had eleven years ago], but my judgement is that it's a low enough risk that we can stop where we are and just monitor it."
Oh. That was deflating, and a little scary. I wasn't sure how scary, so confusing, too.
He went on to discuss the possibility of radiation ("This hospital has been experimenting with re-radiating the same breast but the benefit seems very small, so let's set up a consultation with a radiologist for you to discuss the benefits and side effect"). I asked about going back on hormone therapy, and he thought my old oncologist should decide that. I was given three more appointments in the next month -- radiologist, oncologist, and another check of the incision by Dr. C -- and sent home.
Calling my family to tell the good news was excellent. But I didn't tell my children about the "dirty margin" (as they call it), though it's always tempting to share every single feeling with them. Dr. C. said the risk of recurrence was low, so why trouble them with this vague possibility if I'm not going to have more surgery? And it gave me such pleasure to hear their excited voices when I told them the report was good.
On the other hand, while the percentage of recurrences is low (I think he said 3%), the percentage was also low for getting a recurrence eleven years ago, not to mention for getting Paget's Disease (only 2-5% of breast cancers), or even getting breast cancer at all (I'm the only one among my friends who has had invasive cancer). Here I'd been hanging all week on Good (a fine path report) or Terrible (a bad one), and this leaves me with more mixed feelings than I thought I'd have. I've noticed life is like that so often: just when you think it's a drama of Yes or No, Good or Bad, What I Want or Don't Want, it turns out to be more complex than that, no simple denouement.
And so this morning I woke up feeling down for the first time in quite a while...how odd that in the last weeks of anticipating surgery and the path report, I have been very anxious but quite cheerful, not depressed at all...I suppose because something was always happening next, and there was always the hope that good news would make it all go away.
Wednesday, January 26, 2011
Do YOU Want to Know?
It's a funny feeling: as I get stronger and feel more "normal", part of me wants to forget it all (in spite of my weirdly un-nippled breast, which I still have not seen bare) and part of me feels I'm walking on the edge of a cliff, waiting for the news from the path report.
I find myself making plans for the summer and then catching myself: maybe I'll be having chemo then and those unfulfilled plans will make me feel bad. I've just got to know everything is "all right" -- at least, as far as the doctor can tell -- before I can be normal, whatever that is.
I called yesterday with some trepidation, and was told the report was not back yet. The nurse said I can wait for my post-op visit with Dr. C, the surgeon, on Friday morning, when it will definitely be ready, or I can call today or tomorrow to see if it's in before that. I doubt they'll bother to call me, so I feel I have to decide: how much do I want to know this news now?
Remember that old dorm-room question (not that I ever got to have a dorm room), Would you choose to know the date of your death if you could? My answer would be a resounding No. I'm prepared to live with a certain fogginess over the pain of mortality. On the other hand, it's been in the news a lot lately that if a test is developed that predicts Alzheimer's in an individual, some may prefer to know the results even though there is presently no treatment for it. I'm one of those...and I've thought about it because my mother, her father and two of her sisters died of Alzheimer's, so that pushes me on the more likely side of the genetic probability scale. And I'd like to know, horrible as that would be, for a pragmatic reason: I could make arrangements for my children to take over my finances and decisions when they see the early signs.
What's at stake in the path report is not -- at least, probably not -- as dramatic as death and dementia, but a bad report would sure disrupt my life and bring me stress and pain in the form of a mastectomy. The last few days have been the happiest since this bad dream started in December: the surgery is over, not in a lot of pain, I'm out in the world again, and most of all, back at work. If I choose to know early and the report is bad, I will have forfeited a few days of peace and contentment; on the other hand, underneath everything, the presence of those dark possibilities taints it all. And if I find out the report is good, I can be free of that. So I'm not sure what to do.
I find myself making plans for the summer and then catching myself: maybe I'll be having chemo then and those unfulfilled plans will make me feel bad. I've just got to know everything is "all right" -- at least, as far as the doctor can tell -- before I can be normal, whatever that is.
I called yesterday with some trepidation, and was told the report was not back yet. The nurse said I can wait for my post-op visit with Dr. C, the surgeon, on Friday morning, when it will definitely be ready, or I can call today or tomorrow to see if it's in before that. I doubt they'll bother to call me, so I feel I have to decide: how much do I want to know this news now?
Remember that old dorm-room question (not that I ever got to have a dorm room), Would you choose to know the date of your death if you could? My answer would be a resounding No. I'm prepared to live with a certain fogginess over the pain of mortality. On the other hand, it's been in the news a lot lately that if a test is developed that predicts Alzheimer's in an individual, some may prefer to know the results even though there is presently no treatment for it. I'm one of those...and I've thought about it because my mother, her father and two of her sisters died of Alzheimer's, so that pushes me on the more likely side of the genetic probability scale. And I'd like to know, horrible as that would be, for a pragmatic reason: I could make arrangements for my children to take over my finances and decisions when they see the early signs.
What's at stake in the path report is not -- at least, probably not -- as dramatic as death and dementia, but a bad report would sure disrupt my life and bring me stress and pain in the form of a mastectomy. The last few days have been the happiest since this bad dream started in December: the surgery is over, not in a lot of pain, I'm out in the world again, and most of all, back at work. If I choose to know early and the report is bad, I will have forfeited a few days of peace and contentment; on the other hand, underneath everything, the presence of those dark possibilities taints it all. And if I find out the report is good, I can be free of that. So I'm not sure what to do.
Monday, January 24, 2011
I am a Bitch with Cancer
I swear, breast cancer No. 2 is turning me into a bitch, or else bringing out the bitch that has always lurked within.
I am so tired, for example, of people telling me "it's going to be fine." Here's today's conversation with a colleague who just learned the news and called to get an update:
Me: Blah, blah, so the path report should be ready this week and I'm anxiously waiting for the results.
Colleague: Oh, I'm sure it'll be fine...
Me: Please don't say that! I hate when people tell me everything will be fine when you don't actually know that. [Lamely, feeling guilty at my aggressive tone]..I mean, it's the evil eye thing, I guess..
Colleague: I didn't say it will be fine, I said I hope it will be fine.
Now, gentle reader, she lied, whether purposefully or unconsciously. Because I distinctly heard her say "I'm sure", and "I'm sure I hope it will be fine" makes no sense at all. Normally I'm far from confrontational and would have dropped it, but instead I stuck my metaphorical chin out and said "No, you said you were sure it would be fine. The thing is, if the doctor wasn't sure it would be fine, how could we be?" Note that I softened it at the last minute by saying "we" when I really meant "You, idiot."
I think I've illustrated what I mean by my new level of bitchiness.
Why does this piss me off so much? Hmm, let me count the ways: mostly, it feels dismissive.."Don't feel bad because then I don't know what to say, so let's just wrap it up with a note of positive thinking, and we're on to the next topic!" Then too, maybe it IS the evil eye thing, ingrained from childhood: never-never-say-anything-will-be-good, because you're provoking the gods and they'll make you pay. (You can see I'm from peasant stock.)
I feel bad about my poor colleague, who is both very nice and nice to me in particular, and I hope I didn't make her sorry she called. You may be curious how she handled my mini-assault: simple. She changed the subject, which is no doubt what she wanted to do anyway.
I am so tired, for example, of people telling me "it's going to be fine." Here's today's conversation with a colleague who just learned the news and called to get an update:
Me: Blah, blah, so the path report should be ready this week and I'm anxiously waiting for the results.
Colleague: Oh, I'm sure it'll be fine...
Me: Please don't say that! I hate when people tell me everything will be fine when you don't actually know that. [Lamely, feeling guilty at my aggressive tone]..I mean, it's the evil eye thing, I guess..
Colleague: I didn't say it will be fine, I said I hope it will be fine.
Now, gentle reader, she lied, whether purposefully or unconsciously. Because I distinctly heard her say "I'm sure", and "I'm sure I hope it will be fine" makes no sense at all. Normally I'm far from confrontational and would have dropped it, but instead I stuck my metaphorical chin out and said "No, you said you were sure it would be fine. The thing is, if the doctor wasn't sure it would be fine, how could we be?" Note that I softened it at the last minute by saying "we" when I really meant "You, idiot."
I think I've illustrated what I mean by my new level of bitchiness.
Why does this piss me off so much? Hmm, let me count the ways: mostly, it feels dismissive.."Don't feel bad because then I don't know what to say, so let's just wrap it up with a note of positive thinking, and we're on to the next topic!" Then too, maybe it IS the evil eye thing, ingrained from childhood: never-never-say-anything-will-be-good, because you're provoking the gods and they'll make you pay. (You can see I'm from peasant stock.)
I feel bad about my poor colleague, who is both very nice and nice to me in particular, and I hope I didn't make her sorry she called. You may be curious how she handled my mini-assault: simple. She changed the subject, which is no doubt what she wanted to do anyway.
Friday, January 21, 2011
Healing Well
So pronounced the nurse, after I squeezed myself into her schedule and waited an hour to see her. This is because it's Friday, and I knew that if I didn't have a professional look at the wound, I'd worry that it was infected all weekend. Many, many times -- diverticulitis attack, various UTIs, children's ailments, and of course, the diagnosis of cancer -- conditions for which you need to see a doctor have occurred on the weekend, or just before a major holiday...just my luck, right?
I was already downtown on my first subway trip (complete with transfer at 42nd St) since surgery, to copy the syllabus for the first day of class on Monday and meet with a grad student who wants to do an Independent Study...pretty much on sex, but okay, sure. I felt lousy, and as the day went by, I had convinced myself that I was running a fever. Nope. The sweet and very efficient nurse took my temp and took one look and said everything was going well, and I just need to rest. It's common to feel worse after the first day or two, she said, because the immune system has kicked in after the first shock and is causing all the discomforts in the area that I'm experiencing, like redness, swelling and stinging. Interesting.
I came home to the comforts of a cable box that is up and running, after a serious diagnosis of TOO MUCH CAT HAIR in the mechanism by the technician. Not sure exactly what to do about that. The culprits don't go near the cable box, but their hair sure does fly wantonly about the room and lands everywhere. If I could sell loose cat hair as an accessory, I'd make a fortune.
So nice to nestle under the electric blanket and watch my electric boob-tube. And no pun about boobs intended.
I was already downtown on my first subway trip (complete with transfer at 42nd St) since surgery, to copy the syllabus for the first day of class on Monday and meet with a grad student who wants to do an Independent Study...pretty much on sex, but okay, sure. I felt lousy, and as the day went by, I had convinced myself that I was running a fever. Nope. The sweet and very efficient nurse took my temp and took one look and said everything was going well, and I just need to rest. It's common to feel worse after the first day or two, she said, because the immune system has kicked in after the first shock and is causing all the discomforts in the area that I'm experiencing, like redness, swelling and stinging. Interesting.
I came home to the comforts of a cable box that is up and running, after a serious diagnosis of TOO MUCH CAT HAIR in the mechanism by the technician. Not sure exactly what to do about that. The culprits don't go near the cable box, but their hair sure does fly wantonly about the room and lands everywhere. If I could sell loose cat hair as an accessory, I'd make a fortune.
So nice to nestle under the electric blanket and watch my electric boob-tube. And no pun about boobs intended.
Two Days Later
Only two days later, and my spirits have bounced back. My daughter C. firmly told me to have some perspective ("It's only been two days since surgery, Ma, give yourself a break, it will get a little better every day, geez...") -- usually my other daughter, A., performs this necessary task, but C. is quite good at it too -- and sure enough, some energy came back yesterday. I went further afield for breakfast, and actually got some teaching preparation done. And last night was the first since before surgery that I didn't have raging insomnia.
Also, I'm not in pain any longer, though the poor beaten-up breast is pinkish and swollen tight, just as when I had an infection while nursing babies. The nurse I called said this could be normal for recovery, but I must watch and see it doesn't get worse.
And I worked the phone and had the cable appointment moved up to this morning. I am now sitting here waiting for Cable Guy, who will arrive at the last minute of the designated window, or not at all, if the past is any indication. I guess you could say that's part of life returning to normal?
Also, I'm not in pain any longer, though the poor beaten-up breast is pinkish and swollen tight, just as when I had an infection while nursing babies. The nurse I called said this could be normal for recovery, but I must watch and see it doesn't get worse.
And I worked the phone and had the cable appointment moved up to this morning. I am now sitting here waiting for Cable Guy, who will arrive at the last minute of the designated window, or not at all, if the past is any indication. I guess you could say that's part of life returning to normal?
Wednesday, January 19, 2011
I am Ridiculous, Post-Op Version
Yesterday I had the surgery. I set the alarm for 5 am so I'd have time to take a second shower with some super-germicide as ordered, then appear at the hospital, about as far east from my place as you can go in Manhattan and a couple of miles downtown, by 7 am. Instead I woke at 4:45 after little sleep, as if I knew what was coming. After the shower, I walked rapidly through the ghostly, snowy dark (how empty the streets are at 6 in the morning after a snowfall!) to the subway and then the bus, arriving at the hospital half an hour early. It was oddly comforting to see how busy the hospital was at 6:30 am, staff going in and out chatting on cellphones or walking with quick steps down corridors.
From there it went like clockwork, as it pretty much always does at Sloan-Kettering; they have their firm routines, and you're pushed along the required stops on the road with beautiful precision. To my joy, I did not have general anethesia; instead I was given Propofal (if that's how it's spelled), the Michael Jackson drug. I did not even count down...the last words I heard were, "We're just giving you something to sedate you first." There was no second as far as I could tell, and I woke up feeling remarkably well, considering. Big elastic bandage around my chest, but couldn't see beneath it, and still haven't really looked, so nothing to get upset about there. I'm saving that for later.
My dear daughter C. picked me up on time, stuck me in a taxi for a damned expensive ride, and by midday we were at my table having tea, toast and jam before she had to return to work. I was almost euphoric: It's over! Then I popped one of the Vicodin and basically slept dreamlessly on and off the rest of the afternoon, evening and night. In between bouts of sleep I ate the chicken-and-cornbread pot pie I'd thought to make the day before. So far, so good.
But I woke this morning in the lowest spirits I've had since the diagnosis in late December, basically spent an hour or so mopping tears. The pain had worsened over the course of the day, and I realized when I woke up that it hurt more than yesterday to reach things, or pick things up (like the flowerpot one of the cats upset in the middle of the night), or wash dishes. I didn't have to get up for any reason, so I lay there exhausted, in spite of all the sleep. Then the anxious thoughts began:
1. Now that I've experienced this relatively minor out-patient surgery, I'm more afraid than ever of the more extensive surgery with general anesthesia I'll have to have if the post-op path report is not good. Sure, that's now unlikely, but that's what I was told at other times...So unlikely that the sentinel node will be malignant! Odds are that the altered appearance of your nipple is nothing at all! If there's one thing I've absorbed from this, it's that unlikely things do happen.
2. My daily habit is to leave my apartment as soon as I'm dressed, rain or shine, work or no work, to have breakfast out while I read the paper. I don't really feel the necessity of this when I'm a houseguest at someone's spacious home, so it must have to do with a kind of morning loneliness or claustrophobia, or both. In spite of feeling pretty awful, I did get dressed and went out today, only to feel dismayingly weak and invalid-ish. Basically I had the gait and strength of a ninety year old woman. Yes, that's to be expected 24 hours after even out-patient surgery, but it brought back very unpleasant buried memories of feeling that way for six solid months during chemotherapy eleven years ago.
3. This led to lots of self-pitying thoughts about being alone. In addition to Real Estate Envy and Good Health Envy, I felt a bad infusion of Partner Envy. How well that must work: you have someone by your side who by institutional imperative (at the least) is obligated to take care of you, or better yet is impelled to do it by their emotional investment in you. You have a claim on them, very different from a relationship with good friends who are being kind (your grown kids have a deep emotional investment, but if they have young children of their own, as all three of mine do, their main obligations are elsewhere). And if you live with your main squeeze, you don't have to feel that you're burdening him or her too much. That's how the partner system works, but it hasn't been there for me for many years.
4. As one of their little jokes, the gods decided to render my cable box completely dysfunctional last night, so the comfort of holing up in bed (and there really is no other place to hole up in my studio apartment) while watching amusing stuff I'd saved for this occasion was trashed. This is a new cable box, installed last summer -- what amazing timing. No TV at all till it's fixed, and of course no appointments to fix it are available for days. I could read, but my head is foggy and the programs on my DVR would have been just what the doctor didn't order.
Yes, this is all mostly silly, made larger by lying in bed feeling sorry for myself. Big deal: I thought I'd work intensively on the book this month and that's not possible. So there's no partner to hover over me and bring me tea and pick up the dirt from the plant that the cat sent crashing at 3 am. So I'm not my usual energetic and curious self the day after surgery and feel both restless and also unable to do anything to entertain myself now that the cable box is sitting there dead and useless. At this point, I'm alive and haven't heard anything different. And I long ago decided that I'd rather take care of myself than live with a partner I'm not downright crazy about. Plus there's a fair chance I'd have to be the partner who takes care of the other (given my luck), which sounds much less appealing.
One step at a time, to paraphrase the useful advice of AA.
From there it went like clockwork, as it pretty much always does at Sloan-Kettering; they have their firm routines, and you're pushed along the required stops on the road with beautiful precision. To my joy, I did not have general anethesia; instead I was given Propofal (if that's how it's spelled), the Michael Jackson drug. I did not even count down...the last words I heard were, "We're just giving you something to sedate you first." There was no second as far as I could tell, and I woke up feeling remarkably well, considering. Big elastic bandage around my chest, but couldn't see beneath it, and still haven't really looked, so nothing to get upset about there. I'm saving that for later.
My dear daughter C. picked me up on time, stuck me in a taxi for a damned expensive ride, and by midday we were at my table having tea, toast and jam before she had to return to work. I was almost euphoric: It's over! Then I popped one of the Vicodin and basically slept dreamlessly on and off the rest of the afternoon, evening and night. In between bouts of sleep I ate the chicken-and-cornbread pot pie I'd thought to make the day before. So far, so good.
But I woke this morning in the lowest spirits I've had since the diagnosis in late December, basically spent an hour or so mopping tears. The pain had worsened over the course of the day, and I realized when I woke up that it hurt more than yesterday to reach things, or pick things up (like the flowerpot one of the cats upset in the middle of the night), or wash dishes. I didn't have to get up for any reason, so I lay there exhausted, in spite of all the sleep. Then the anxious thoughts began:
1. Now that I've experienced this relatively minor out-patient surgery, I'm more afraid than ever of the more extensive surgery with general anesthesia I'll have to have if the post-op path report is not good. Sure, that's now unlikely, but that's what I was told at other times...So unlikely that the sentinel node will be malignant! Odds are that the altered appearance of your nipple is nothing at all! If there's one thing I've absorbed from this, it's that unlikely things do happen.
2. My daily habit is to leave my apartment as soon as I'm dressed, rain or shine, work or no work, to have breakfast out while I read the paper. I don't really feel the necessity of this when I'm a houseguest at someone's spacious home, so it must have to do with a kind of morning loneliness or claustrophobia, or both. In spite of feeling pretty awful, I did get dressed and went out today, only to feel dismayingly weak and invalid-ish. Basically I had the gait and strength of a ninety year old woman. Yes, that's to be expected 24 hours after even out-patient surgery, but it brought back very unpleasant buried memories of feeling that way for six solid months during chemotherapy eleven years ago.
3. This led to lots of self-pitying thoughts about being alone. In addition to Real Estate Envy and Good Health Envy, I felt a bad infusion of Partner Envy. How well that must work: you have someone by your side who by institutional imperative (at the least) is obligated to take care of you, or better yet is impelled to do it by their emotional investment in you. You have a claim on them, very different from a relationship with good friends who are being kind (your grown kids have a deep emotional investment, but if they have young children of their own, as all three of mine do, their main obligations are elsewhere). And if you live with your main squeeze, you don't have to feel that you're burdening him or her too much. That's how the partner system works, but it hasn't been there for me for many years.
4. As one of their little jokes, the gods decided to render my cable box completely dysfunctional last night, so the comfort of holing up in bed (and there really is no other place to hole up in my studio apartment) while watching amusing stuff I'd saved for this occasion was trashed. This is a new cable box, installed last summer -- what amazing timing. No TV at all till it's fixed, and of course no appointments to fix it are available for days. I could read, but my head is foggy and the programs on my DVR would have been just what the doctor didn't order.
Yes, this is all mostly silly, made larger by lying in bed feeling sorry for myself. Big deal: I thought I'd work intensively on the book this month and that's not possible. So there's no partner to hover over me and bring me tea and pick up the dirt from the plant that the cat sent crashing at 3 am. So I'm not my usual energetic and curious self the day after surgery and feel both restless and also unable to do anything to entertain myself now that the cable box is sitting there dead and useless. At this point, I'm alive and haven't heard anything different. And I long ago decided that I'd rather take care of myself than live with a partner I'm not downright crazy about. Plus there's a fair chance I'd have to be the partner who takes care of the other (given my luck), which sounds much less appealing.
One step at a time, to paraphrase the useful advice of AA.
Monday, January 17, 2011
I am Ridiculous
If you've read this blog at all, you may have picked up that I often tend to worry about small things when I'm really worried about big things. Tomorrow is my surgery, but I really wasn't anxious about it today...instead I gnawed on my fear of the fasting you have to do the day of surgery. Yes, I hate any kind of fasting, including hunger when a dinner host makes you wait hours before you can sink your teeth into anything filling...the sort of thing most people don't mind (or at least appear not to mind) at all. My dear friend G.R. used to skip lunch regularly to maintain his weight; I viewed him as a kind of alien species. I can't remember the last time I voluntarily skipped lunch or any other meal. It's not in my repertoire.
I suppose this comes from deep, dark neurotic roots...lack of nurturing, self-comforting instead of maternal warmth and so on. But who cares? I'm not overweight, and I like to eat. Period. It's all about pleasure, people, and avoiding pain. I'm a Utilitarian.
So when I learned that I have to be at the hospital by 7 a.m. I was overjoyed rather than annoyed that I have to get up at the crack of the alarm clock at 5 am or so. This afternoon I happily made a cornbread-topped chicken pot pie from scratch to eat for the next few days. And I strongly feel that since I won't be eating till the afternoon tomorrow, I should not put limits on the amount of chocolate I eat tonight. There's got to be some fun in all this.
I suppose this comes from deep, dark neurotic roots...lack of nurturing, self-comforting instead of maternal warmth and so on. But who cares? I'm not overweight, and I like to eat. Period. It's all about pleasure, people, and avoiding pain. I'm a Utilitarian.
So when I learned that I have to be at the hospital by 7 a.m. I was overjoyed rather than annoyed that I have to get up at the crack of the alarm clock at 5 am or so. This afternoon I happily made a cornbread-topped chicken pot pie from scratch to eat for the next few days. And I strongly feel that since I won't be eating till the afternoon tomorrow, I should not put limits on the amount of chocolate I eat tonight. There's got to be some fun in all this.
Sunday, January 16, 2011
Surgery Looms
I met with the surgeon on Friday and had various pre-op tests (blood, X-ray, EKG) performed. Memorial Sloan-Kettering is a well-oiled machine; you are tunnelled from office to office, where a kindly nurse or technician takes you through exactly what you must do and what will happpen. As unpleasant as it is (the depersonalization, no matter how well-meant, the technologies, leave-your-clothes-here, recite your name and birth date), there's also a kind of comfort in it: they've done this thousands of times and they know exactly what they're doing.
Dr. C., my surgeon, exudes professional competence and calm. He will change the breast shape as little as possible, since the MRI result was so good...with the small exception of that nipple, of course. The surgery is outpatient, and aside from a bit more rest than usual, I should have a quick recovery and can go back to work in a week, JUST in time for the first day of classes, coincidentally. All this was reassuring.
But then he said: There's a 90% chance that we will find nothing more, as the MRI indicated. But we won't really know until the post-op pathology report comes back, 7-10 days later. Even an MRI isn't a hundred percent reliable. If the path report shows more cancer than we thought, we'll have to go back in and do a mastectomy.
Oh. So that provokes more anxiety. I'm almost there, but could be stopped in my tracks, as when it turned out that the sentinel lymph node was malignant eleven years ago. The odds were against that too. The result of that was five months of chemotherapy and a much bigger, more painful operation.
But keep the spirits and optimisim up. Worry isn't going to make it better or worse.
Dr. C., my surgeon, exudes professional competence and calm. He will change the breast shape as little as possible, since the MRI result was so good...with the small exception of that nipple, of course. The surgery is outpatient, and aside from a bit more rest than usual, I should have a quick recovery and can go back to work in a week, JUST in time for the first day of classes, coincidentally. All this was reassuring.
But then he said: There's a 90% chance that we will find nothing more, as the MRI indicated. But we won't really know until the post-op pathology report comes back, 7-10 days later. Even an MRI isn't a hundred percent reliable. If the path report shows more cancer than we thought, we'll have to go back in and do a mastectomy.
Oh. So that provokes more anxiety. I'm almost there, but could be stopped in my tracks, as when it turned out that the sentinel lymph node was malignant eleven years ago. The odds were against that too. The result of that was five months of chemotherapy and a much bigger, more painful operation.
But keep the spirits and optimisim up. Worry isn't going to make it better or worse.
Thursday, January 13, 2011
Lucky/Unlucky
My poor father, born in the mean streets of the Whitechapel district of London to an impoverished tin peddlar and his illiterate wife, used to shake his head bitterly when something bad happened and cry, "Goddamn-stinkin'-rotten-lousy-LUCK!" Naturally, that meant he had none. And the truth was, he didn't have a lot, but probably could have made more of what he had (or at least that was my mother's view).
So it's no wonder that a theme of I've-got-bad-luck runs through my life. It's so pervasive as my complaint, my fear, my attempt at manipulating the gods through guilt, that I smile when I hear myself thinking it. "Oh, poor you," mocked a therapist once, "As if whatever happens that you don't like is just luck." Her big theory was that I was mentally cowardly and lazy, dooming myself to self-fulfilling prophecies when I should be upbeat, positive and optimistic about my bright future. Which would get me nowhere, given my lousy luck.
What happens when a hypochondriac gets sick is similar to what happens when the bad-luck girl gets a diagnosis of cancer for the second time, out of the blue. It feels like the gods are picking on her...as usual. Take that, therapist; did I deserve this? Did I?
Yes, poor me, dammit.
Part of my luck fixation is a (yes, I admit it) irrational envy of those who have good luck. This might take the form of inherited money, but usually centers on acute Real Estate Envy (which shows I'm a New Yorker): the rent controlled or rent stabilized who happened to stay in the right place at the right time, or the recipients of gifts from well-off parents. They never seem to ask or doubt whether they deserve this largesse. Because here's what's odd: I don't at all envy those who accomplish or achieve by being smart, talented, or hard-working. I see the justice of that and don't begrudge their prizes and acclaim, even their financial rewards. I don't even envy the beautiful or the young; I consider that almost a fleeting kind of talent, or at least a state of grace.
The form my irrationality takes right now is Health Envy: I look around at everyone I know who is my age, and overwhelmingly, I see healthy breasts and people with minor complaints who bitch about them endlessly. There are friends who rarely or never go to doctors -- and have absolutely nothing wrong with them, who never even get bladder infections. Why?
And then I think of the exceptions: a childhood friend who was diagnosed with Lou Gehrig's disease and died this year after only 13 months of (terrifying) illness, or a friend's wife whose multiple sclerosis is getting worse. It all seems to come down to...luck. Good luck, or bad. And which was mine, if I get past this roller coaster month and live?
So it's no wonder that a theme of I've-got-bad-luck runs through my life. It's so pervasive as my complaint, my fear, my attempt at manipulating the gods through guilt, that I smile when I hear myself thinking it. "Oh, poor you," mocked a therapist once, "As if whatever happens that you don't like is just luck." Her big theory was that I was mentally cowardly and lazy, dooming myself to self-fulfilling prophecies when I should be upbeat, positive and optimistic about my bright future. Which would get me nowhere, given my lousy luck.
What happens when a hypochondriac gets sick is similar to what happens when the bad-luck girl gets a diagnosis of cancer for the second time, out of the blue. It feels like the gods are picking on her...as usual. Take that, therapist; did I deserve this? Did I?
Yes, poor me, dammit.
Part of my luck fixation is a (yes, I admit it) irrational envy of those who have good luck. This might take the form of inherited money, but usually centers on acute Real Estate Envy (which shows I'm a New Yorker): the rent controlled or rent stabilized who happened to stay in the right place at the right time, or the recipients of gifts from well-off parents. They never seem to ask or doubt whether they deserve this largesse. Because here's what's odd: I don't at all envy those who accomplish or achieve by being smart, talented, or hard-working. I see the justice of that and don't begrudge their prizes and acclaim, even their financial rewards. I don't even envy the beautiful or the young; I consider that almost a fleeting kind of talent, or at least a state of grace.
The form my irrationality takes right now is Health Envy: I look around at everyone I know who is my age, and overwhelmingly, I see healthy breasts and people with minor complaints who bitch about them endlessly. There are friends who rarely or never go to doctors -- and have absolutely nothing wrong with them, who never even get bladder infections. Why?
And then I think of the exceptions: a childhood friend who was diagnosed with Lou Gehrig's disease and died this year after only 13 months of (terrifying) illness, or a friend's wife whose multiple sclerosis is getting worse. It all seems to come down to...luck. Good luck, or bad. And which was mine, if I get past this roller coaster month and live?
Tuesday, January 11, 2011
Surgical Insomnia
I must be getting anxious about the upcoming surgery, even though I don't expect it to be difficult. Last night I woke at 3 a.m. and tossed until 6 a.m., when I briefly fell into dreaming about anxiety-filled situations, e.g. I was taking care of a grandchild at the movies and when I came back to our seats from getting him a snack, he wasn't there. Freud? Meaning? Ah, you say we don't need Freud for this one? You think?
I'm always amused afterward by the kinds of thoughts I dwell on when I have insomnia in the middle of the night (as opposed to not being able to fall asleep, when my mind is more ordered). What I was thinking about at 4 a.m., for example, was not death but a)how much I dread fasting before the surgery, and b)what I'm going to look like in a bathing suit, and whether I'd have to wear one without cleavage for the first time in my life. I'm going to have to buy a new one, and I hate shopping for bathing suits, I remember saying to myself petulantly. Not exactly a Jean-Paul Sartre level of cognition about being and existence. And it doesn't help at all to tell myself that I shouldn't be sweating the little stuff. Because at 4 a.m. it doesn't feel little, period.
I'm always amused afterward by the kinds of thoughts I dwell on when I have insomnia in the middle of the night (as opposed to not being able to fall asleep, when my mind is more ordered). What I was thinking about at 4 a.m., for example, was not death but a)how much I dread fasting before the surgery, and b)what I'm going to look like in a bathing suit, and whether I'd have to wear one without cleavage for the first time in my life. I'm going to have to buy a new one, and I hate shopping for bathing suits, I remember saying to myself petulantly. Not exactly a Jean-Paul Sartre level of cognition about being and existence. And it doesn't help at all to tell myself that I shouldn't be sweating the little stuff. Because at 4 a.m. it doesn't feel little, period.
Monday, January 10, 2011
The Knife
I don't really understand how people can bear to be surgeons and cut into flesh, even for life-giving purposes. I suppose Dr. C. will not think of himself as cutting off a nipple so much as cutting out the bad stuff, the killer, though both are true.
It's all scheduled now, down in my calendar: this Wed., pre-op meeting with surgeon and tests like X-ray and EKG, and the surgery itself next week, on Tues. The focus of interest should be getting through it and the post-op path report, which could answer important questions like whether this is a recurrence or new cancer, how aggressive the nature of the malignancy actually is, and whether or not the surgeon got enough out so the operation doesn't have to be immediately repeated, as eleven years ago.
Instead I find myself thinking about fitting into my bras, and what I'm going to have to do to look passably normal. This is actually more of an issue to me than how I'm going to look without a bra, since I can control who will see me naked (basically, as of this writing, no one), but I have to go out and face the public (including that pitiless population, my students) dressed, like it or not.
It's all scheduled now, down in my calendar: this Wed., pre-op meeting with surgeon and tests like X-ray and EKG, and the surgery itself next week, on Tues. The focus of interest should be getting through it and the post-op path report, which could answer important questions like whether this is a recurrence or new cancer, how aggressive the nature of the malignancy actually is, and whether or not the surgeon got enough out so the operation doesn't have to be immediately repeated, as eleven years ago.
Instead I find myself thinking about fitting into my bras, and what I'm going to have to do to look passably normal. This is actually more of an issue to me than how I'm going to look without a bra, since I can control who will see me naked (basically, as of this writing, no one), but I have to go out and face the public (including that pitiless population, my students) dressed, like it or not.
Saturday, January 8, 2011
Nipples
So today I'm thinking about nipples in general and my left nipple in particular. It's an interesting experience to look at a part of your body that you've had all your life and know that it's shortly going away. I don't think that's ever happened to me before, unless you count cutting off hair and trimming nails.
When I've told people in person that this is about to happen (not many, actually), I think I see by their expressions that they're embarrassed or horrified, or maybe embarrassed because they're trying not to show that they're horrified. But is it really all that bad? This is what I'm contemplating today.
That nipple (and its twin, of course) has had a long and rich life of its own, in a way. I remember very well when it first puffed out at age eleven, and my puzzlement about this, since I hadn't exactly been briefed on expecting it or what it meant. I can recall fitting into a size A bra, which became a B rather quickly after. There was the odd recognition that boys were very interested in the existence of those nipples, and not quite understanding the enthusiasm behind that for a long time.
It took a while to see the beauty of a breast and nipple, and to think my own were quite pretty. The nipple part of the breast is almost always painted as rosy and smooth, or photographed in glowing light, when in fact it's not lovely in itself, especially the bump at the end that goes into the baby's (or lover's) mouth.
Then came the babies, three of them, if anything more fixated than the boys had been, each infant in turn totally obsessed with those nipples. They were sore with the babies' vacuum sucking, as unbelievably (to me) they delivered the milk with sloppy efficiency and were always there in the middle of the night when they were needed (unlike plastic bottles that had to be fetched from the kitchen). And for a long time, even when they weren't needed (as in the middle of the night past the newborn stage) they were still always wanted, possibly the most wanted part of my entire body, since they've done double service for sexual desire and nurturing.
Because of breast feeding or weight gain or both, the bra size became a C and stayed there, and the bra no longer had to be the kind that opened for the baby's mouth. And so it proceeded for many years, the admirers of the nipples being lovers only, no more infants.
And now -- no babies, no lovers, no admirers any longer for those nipples. That one will be just gone, and the poor breast will look odd, probably monstrous to anyone who should look at it. I don't intend for it to be seen, though, maybe not even by me. I'm recalling that when my father had a mastectomy (he had male breast cancer) and swam shirtless in a pool, someone complained to the management that his surgery scar was disturbing and they made him put on a shirt when he swam. I remember his face when he told me that. And I've seen pictures of mastectomies myself online and in magazines, and I thought they were repulsive and disturbing to look at too.
Yet I am not very upset at losing my nipple, in spite of facing problems in looking good in shirts and tank tops. What's the value of looking good? I've been giving that up for years now. I feel like I've made a swap, my nipple for my life, and I've got the far better part of the bargain. I'm going to say goodbye to that nipple fondly and with regret, but it's going to be a hearty farewell. You might say that after nursing babies and pleasing lovers, giving and getting pleasure, it's done its job long and well and the last thing it can do for me is go quietly to save my life.
When I've told people in person that this is about to happen (not many, actually), I think I see by their expressions that they're embarrassed or horrified, or maybe embarrassed because they're trying not to show that they're horrified. But is it really all that bad? This is what I'm contemplating today.
That nipple (and its twin, of course) has had a long and rich life of its own, in a way. I remember very well when it first puffed out at age eleven, and my puzzlement about this, since I hadn't exactly been briefed on expecting it or what it meant. I can recall fitting into a size A bra, which became a B rather quickly after. There was the odd recognition that boys were very interested in the existence of those nipples, and not quite understanding the enthusiasm behind that for a long time.
It took a while to see the beauty of a breast and nipple, and to think my own were quite pretty. The nipple part of the breast is almost always painted as rosy and smooth, or photographed in glowing light, when in fact it's not lovely in itself, especially the bump at the end that goes into the baby's (or lover's) mouth.
Then came the babies, three of them, if anything more fixated than the boys had been, each infant in turn totally obsessed with those nipples. They were sore with the babies' vacuum sucking, as unbelievably (to me) they delivered the milk with sloppy efficiency and were always there in the middle of the night when they were needed (unlike plastic bottles that had to be fetched from the kitchen). And for a long time, even when they weren't needed (as in the middle of the night past the newborn stage) they were still always wanted, possibly the most wanted part of my entire body, since they've done double service for sexual desire and nurturing.
Because of breast feeding or weight gain or both, the bra size became a C and stayed there, and the bra no longer had to be the kind that opened for the baby's mouth. And so it proceeded for many years, the admirers of the nipples being lovers only, no more infants.
And now -- no babies, no lovers, no admirers any longer for those nipples. That one will be just gone, and the poor breast will look odd, probably monstrous to anyone who should look at it. I don't intend for it to be seen, though, maybe not even by me. I'm recalling that when my father had a mastectomy (he had male breast cancer) and swam shirtless in a pool, someone complained to the management that his surgery scar was disturbing and they made him put on a shirt when he swam. I remember his face when he told me that. And I've seen pictures of mastectomies myself online and in magazines, and I thought they were repulsive and disturbing to look at too.
Yet I am not very upset at losing my nipple, in spite of facing problems in looking good in shirts and tank tops. What's the value of looking good? I've been giving that up for years now. I feel like I've made a swap, my nipple for my life, and I've got the far better part of the bargain. I'm going to say goodbye to that nipple fondly and with regret, but it's going to be a hearty farewell. You might say that after nursing babies and pleasing lovers, giving and getting pleasure, it's done its job long and well and the last thing it can do for me is go quietly to save my life.
Friday, January 7, 2011
The Surgeon Weighs In
To me, it seemed like an eon till the doctor called me - yet I'm sure to him it seemed perfectly normal to wait two days. It was a short conversation, basically confirming that since the imaging revealed no new cancer, it's probably confined to the ducts beneath the nipple, the minimum for Paget's. He thinks a mastectomy is not necessary; he's just going to excise the bad stuff, which unfortunately includes the nipple itself, and hope that the pathology report supports that decision. If not, back to square one, which means mastectomy, though probably not chemo.
Many questions remain: When will surgery be? How long and how bad will recovery be? What will the path report show? Will I need more surgery for dirty margins? What about post-op treatment, since I can't be radiated twice? And so on. Sigh.
Of these, the most important is the path report: it will show if this cancer is a recurrence of the last one, or possibly a new one, and it will show the "grade" of the cancer cells. From what I've read, you don't want a recurrence, as it shows the cells were there doing God-knows-what all these years.
I feel like I dodged a bullet. Yet I can't now feel safe again, not for a long, long time.
Many questions remain: When will surgery be? How long and how bad will recovery be? What will the path report show? Will I need more surgery for dirty margins? What about post-op treatment, since I can't be radiated twice? And so on. Sigh.
Of these, the most important is the path report: it will show if this cancer is a recurrence of the last one, or possibly a new one, and it will show the "grade" of the cancer cells. From what I've read, you don't want a recurrence, as it shows the cells were there doing God-knows-what all these years.
I feel like I dodged a bullet. Yet I can't now feel safe again, not for a long, long time.
Thursday, January 6, 2011
Another Day
I'm embarrassed to say that though I sat in front of a computer several hours in the library today, supposedly working on my book, I accomplished very little. Instead I spent most of my time there reading reviews of the new Mike Leigh movie I saw yesterday ("Another Year") and searching for articles on how predictive MRI results are for successful surgery on Paget's Disease, the form of cancer I have.
I love to read movie reviews after I've seen a movie, especially one I'm on the fence about, but an hour and a half of this is over the top even for me. I did find a couple of very interesting medical articles co-authored (to my surprise) by my own surgeon on exactly the question I was researching. How fortuitous was that? And the answer was gratifying: apparently studies show that MRI exams are quite reliable in spotting "occult" (meaning hidden, those that don't show up on mammograms) breast cancer. Tumors of various types and sizes usually accompany Paget's and their presence determines whether the patient must have a mastectomy or might -- notice might -- be able to get away with excision of the nipple area.
Now to be fair to myself, all this distraction and procrastination probably had to do with waiting all day for the surgeon to call me back, which he has not, as of this writing at past 5 pm. I haven't spoken to him since I had the mammogram and MRI, and I can't know or do another thing till he tells me what the tests mean and where we should go next. So while there isn't the dark cloud of dreadful anxiety that made waiting for imaging results so difficult, I do still feel a bit on edge about that phone call and not knowing when the surgery will take place. I worried all day about missing it, the way I missed the dermatologist when she called to tell me the biopsy showed cancer, while I was in the bathroom for five minutes and left the cell phone in the other room. I then had to wait for another horrible hour or so to get hold of her.
"He's been in surgery all day," said the secretary snippily when I called him again at 4:30 pm. Apparently I'm going to be waiting some more.
I love to read movie reviews after I've seen a movie, especially one I'm on the fence about, but an hour and a half of this is over the top even for me. I did find a couple of very interesting medical articles co-authored (to my surprise) by my own surgeon on exactly the question I was researching. How fortuitous was that? And the answer was gratifying: apparently studies show that MRI exams are quite reliable in spotting "occult" (meaning hidden, those that don't show up on mammograms) breast cancer. Tumors of various types and sizes usually accompany Paget's and their presence determines whether the patient must have a mastectomy or might -- notice might -- be able to get away with excision of the nipple area.
Now to be fair to myself, all this distraction and procrastination probably had to do with waiting all day for the surgeon to call me back, which he has not, as of this writing at past 5 pm. I haven't spoken to him since I had the mammogram and MRI, and I can't know or do another thing till he tells me what the tests mean and where we should go next. So while there isn't the dark cloud of dreadful anxiety that made waiting for imaging results so difficult, I do still feel a bit on edge about that phone call and not knowing when the surgery will take place. I worried all day about missing it, the way I missed the dermatologist when she called to tell me the biopsy showed cancer, while I was in the bathroom for five minutes and left the cell phone in the other room. I then had to wait for another horrible hour or so to get hold of her.
"He's been in surgery all day," said the secretary snippily when I called him again at 4:30 pm. Apparently I'm going to be waiting some more.
Yes, Good News!
I'm almost afraid to write it, but the nurse called yesterday while I was having lunch out with a friend and told me the MRI result was "benign." For a second I wasn't sure what she meant, I was so focused on how much cancer there was. I'm still wary of being too happy till I talk to the doctor, who didn't call me yesterday. What does a negative MRI mean, exactly, about my condition? Does the doctor actually know, or is it an educated guess?
Today the doc is in surgery all day but supposedly will call me in between surgeries (what a fun day that must be). I assume I'm still going to have surgery to have the nipple removed, but I just have to wait and see.
Better "benign" than malignant, of course. I stood in the entryway of the Turkish restaurant calling my children to tell them: "Yeah, baby, a normal MRI!" There's nothing like delivering good news to kids who are upset and worried about you.
And now more waiting. What a two weeks this has been.
Today the doc is in surgery all day but supposedly will call me in between surgeries (what a fun day that must be). I assume I'm still going to have surgery to have the nipple removed, but I just have to wait and see.
Better "benign" than malignant, of course. I stood in the entryway of the Turkish restaurant calling my children to tell them: "Yeah, baby, a normal MRI!" There's nothing like delivering good news to kids who are upset and worried about you.
And now more waiting. What a two weeks this has been.
Tuesday, January 4, 2011
More Anxiety
I was told to try calling for the MRI results late this afternoon (Tues), but when I did just now, the nurse {?} said the results "are still being reviewed" and I should call tomorrow afternoon instead. It's a funny thing that today I was not too exercised about waiting for these results, still triumphing over my fear of MRI's yesterday. In fact, I was in a good mood all day, an I-can-handle-it, warily optimistic mood, and was quite productive with work.
But as soon as I heard that the results were not ready, anxiety kicked in. Was it bad news and they wanted to check and make sure before talking to me? Was the doctor not available to give me the bad news? Or did it just mean that no one had looked at the report yet? No way to know.
Again I focused on a detail: I'm supposed to have lunch out and see a movie with a friend tomorrow, which means I'll have to call for the news on a cell phone, where I often can't hear well. Do I want to be with my friend if/when I get bad news? No, peculiar as it may sound, I'd rather be alone.
But I'm not going to stay by my home phone all afternoon in a state of high anxiety. Better to see the movie and hope for the best, I think.
Oh, I wish this part could be over so we can get to work on what needs to be done to save my life.
But as soon as I heard that the results were not ready, anxiety kicked in. Was it bad news and they wanted to check and make sure before talking to me? Was the doctor not available to give me the bad news? Or did it just mean that no one had looked at the report yet? No way to know.
Again I focused on a detail: I'm supposed to have lunch out and see a movie with a friend tomorrow, which means I'll have to call for the news on a cell phone, where I often can't hear well. Do I want to be with my friend if/when I get bad news? No, peculiar as it may sound, I'd rather be alone.
But I'm not going to stay by my home phone all afternoon in a state of high anxiety. Better to see the movie and hope for the best, I think.
Oh, I wish this part could be over so we can get to work on what needs to be done to save my life.
Monday, January 3, 2011
Take That, You Nasty MRI, You
I was dreading the horrible 45 minute MRI, but I got through it with flying colors just now. First, my daughter A., who always knows exactly what to say to me, gave me a stern talking to about sucking it up because I had to. I knew she was right: I could do this. Second, the Valium was excellent. I wish I'd had it last time when I ran out of there crying with fear and anxiety.
I took it early enough so I was woozy and pleasantly sleepy when I went in. When I was positioned lying flat down on the narrow table, the worst problem for me was not moving my head for nearly an hour --it was immoblized in a kind of hole in the table (surrounded by a tunnel) and I couldn't even lift my chin or scratch my nose, which itched a bit after a while. But they played classical music through the headphones and I imagined ballet dancers moving gracefully and beautifully to the music; that helped a lot. And they provided a ball to squeeze if I needed to stop the procedure. I like an exit plan.
When it was over, I was elated and treated myself to a cab and a guilty-pleasure dinner out (spaghetti and meatballs). Of course the results of the MRI are the next hurdle (tomorrow or the following day) but one step at a time. Right now I'm feeling great because I had the strength to do it.
Can't help wondering if heroin is anything like Valium? If so, I can see the appeal. Im not the druggie type, though, which is why I'd never taken Valium before. You can be sure it will be on hand for the next MRI.
I took it early enough so I was woozy and pleasantly sleepy when I went in. When I was positioned lying flat down on the narrow table, the worst problem for me was not moving my head for nearly an hour --it was immoblized in a kind of hole in the table (surrounded by a tunnel) and I couldn't even lift my chin or scratch my nose, which itched a bit after a while. But they played classical music through the headphones and I imagined ballet dancers moving gracefully and beautifully to the music; that helped a lot. And they provided a ball to squeeze if I needed to stop the procedure. I like an exit plan.
When it was over, I was elated and treated myself to a cab and a guilty-pleasure dinner out (spaghetti and meatballs). Of course the results of the MRI are the next hurdle (tomorrow or the following day) but one step at a time. Right now I'm feeling great because I had the strength to do it.
Can't help wondering if heroin is anything like Valium? If so, I can see the appeal. Im not the druggie type, though, which is why I'd never taken Valium before. You can be sure it will be on hand for the next MRI.
Sunday, January 2, 2011
Anxious Me
This weekend I've experienced a lot of anxiety. Last night, for example, I couldn't fall asleep, not typical of me. I can't wait for this week to be over: the MRI on Monday, the talk with the surgeon about the results on Tuesday, scheduling the surgery.
I also feel a lot of sadness. Even if this doesn't take my life, cancer is preoccupying the very time that I thought I'd have to work hard at my book project and yet also relax, free of the usual pressures of teaching. Instead it seems that January will be devoted to taking care of this invader.
On the good side, I saw a lot of my little grandsons, ages 3.5 and 6 months, who live nearby these last two days, and they could not be more distracting. No matter what, I can't help laughing when I'm with them. Visiting me, the 3 year old commented, "This is a nice place,Grammy". Actually it's a small cluttered studio, but he doesn't care about that.
I also feel a lot of sadness. Even if this doesn't take my life, cancer is preoccupying the very time that I thought I'd have to work hard at my book project and yet also relax, free of the usual pressures of teaching. Instead it seems that January will be devoted to taking care of this invader.
On the good side, I saw a lot of my little grandsons, ages 3.5 and 6 months, who live nearby these last two days, and they could not be more distracting. No matter what, I can't help laughing when I'm with them. Visiting me, the 3 year old commented, "This is a nice place,Grammy". Actually it's a small cluttered studio, but he doesn't care about that.
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