Today is my least favorite holiday, Valentine's Day. I never particularly celebrated it even when I was married, when it seemed entirely manufactured and fake, though that might have been because no one had ever been romantic about V-Day with me. I actually think if a man I loved sent me flowers or wrote a note, I'd be weak in the knees. But now I am not only without a valentine of my own, even a funny valentine, I'm a St. Valentine martyr. My chances for romance or even just sex seem way out of reach. The best I can do is be a one-breasted Amazon in the good fight for love. Not to mention life.
Sob. Literally. When a very sweet male friend of my acquaintance wrote nice things to me today in an email (though non-romantic nice things), I wept a bit in the library, which I'm sure made the studious twenty-somethings nearby uncomfortable.
Snap into the bright side of the picture: a check-up visit to the oncologist affirmed that as far as we know, I'm healthy now. That's not a small thing. That's huge. I'd rather be alive without romance than loved and dead. Period, the end.
Talk about the end...not the end of my life, but the end of this blog. If you have been following it (and to my great joy, some of you apparently have), I want you to know that it may cease (not exactly upon the midnight, as Keats said) now, or any time, I can't say. It was meant to be an account of my recurrence, and it has been, but it seems I'm going to put that behind me and go on. I may check back once in a while to recount how well I've adjusted to my new body with time. Or some development in my life may occur that impels me to say more...I hope not a health development. Whether I do or not, I want you to know how grateful I am that you...mostly anonymous you...have listened when I had something I needed to write. You were the best medicine I had, you readers.
Tuesday, February 14, 2012
Wednesday, February 8, 2012
My Shout-Out to Silicone
Today, one month after surgery, I went to the hole-in-the-wall called My Secret, which is something like a back room Victoria's Secret, as if it were a hidden part of the store too embarassing to show the world. They only see you by appointment, and you're brought into a tiny room with a small table and mirror and asked to undress -- in some ways it felt like I was about to get an abortion in the bad old days. But Marisol, my fitter, was professional and warm, and I left an hour later with a custom-fit silicone breast form (thankfully, she did not use that horrible word prosthesis) that matches the other side.
I am still in a major funk, but the difference between the real thing (meaning the synthetic thing) and the foam stuff I've been using is remarkable. Who invented silicone, anyway? It's probably harmful to the environment and bad in all sorts of ways, but let me tell you, the stuff does have a soft, jelly-like, breast-fatty feel and look to it. When it was in the new bra (in a pocket that prevents it from slipping around), I couldn't tell the difference in the mirror while wearing my shirt. And yes, I like, like, like that. Plus the familiar weight was there again, re-balancing me. I know it's fake, false, a "falsie" (another horrible word, in a different way), yet my mind succumbed to the trick and said, "Oh, it's back, great."
On the other hand, and you know I don't pull my punches here, it looks way weirder than the little foam numbers do when it's sitting on the table rather than inside the bra. In fact it resembles nothing so much as a jellyfish that's somehow assumed a triangular shape. This is going to take getting used to, so that has to be added to the list of what I now have to incorporate into my life. I'm not happy about that. And I absolutely can't imagine that a man who saw it in all its silicone-ness would not be turned way off. The less said about that the better.
But when I walked out of there wearing my new silicone wonder, I actually felt normal, not just looked (I think) normal. At times like these, normal is good. Normal is the best I can aspire to. So I'll take it, gladly. Gratefully. Thank you, silicone.
I am still in a major funk, but the difference between the real thing (meaning the synthetic thing) and the foam stuff I've been using is remarkable. Who invented silicone, anyway? It's probably harmful to the environment and bad in all sorts of ways, but let me tell you, the stuff does have a soft, jelly-like, breast-fatty feel and look to it. When it was in the new bra (in a pocket that prevents it from slipping around), I couldn't tell the difference in the mirror while wearing my shirt. And yes, I like, like, like that. Plus the familiar weight was there again, re-balancing me. I know it's fake, false, a "falsie" (another horrible word, in a different way), yet my mind succumbed to the trick and said, "Oh, it's back, great."
On the other hand, and you know I don't pull my punches here, it looks way weirder than the little foam numbers do when it's sitting on the table rather than inside the bra. In fact it resembles nothing so much as a jellyfish that's somehow assumed a triangular shape. This is going to take getting used to, so that has to be added to the list of what I now have to incorporate into my life. I'm not happy about that. And I absolutely can't imagine that a man who saw it in all its silicone-ness would not be turned way off. The less said about that the better.
But when I walked out of there wearing my new silicone wonder, I actually felt normal, not just looked (I think) normal. At times like these, normal is good. Normal is the best I can aspire to. So I'll take it, gladly. Gratefully. Thank you, silicone.
Saturday, February 4, 2012
Frankly
To be consistent with my truth-telling self, I will relate the odd experience yesterday of visiting my opthamologist for an eye check-up, He asked how I am, so I frankly told him what this year has been like. He trumped me by telling me that since I saw him last, his wife died of esophageal cancer at age 64. He said she had suffered through horrible surgery to replace her esophagus after the diagnosis, and she yet died anyway because it had already spread.
What made this odd, folks, and I'm being brutally honest here, is that my very first reaction was the flash thought, "You know, he's not unattractive, maybe we could be lovers now that he's available." Or somehow that thought was mixed with real compassion for how terrible it must have been for both of them. When he showed no sign of having the same thought, I found myself wondering if my mastectomy turned him off. This sort of thing happens to me all the time, and I'm never sure whether I'm just more selfish than other people, or if many people have these reactions and don't have the foolishness to talk about them or even think about them.
Ugh. Sigh. His story was another instance of perspective on how lucky I am to have a good prognosis compared to so many others. Yet I am still struggling with envy for every two-breasted woman on this planet, which makes no sense. I was helped somewhat recently by a long conversation with a close friend who argued that it's okay to feel bad about your own loss while having perspective about the suffering of others at the same time, that it's not a suffering contest.
This friend and I also talked about the interesting question of how we see ourselves as continuous. How do we incorporate changes like losses in our lives? People are often shocked to see pictures of themselves as they age, the way people are shocked by hearing their voices on a tape recorder. Yet the changes of aging are gradual, which probably helps. For example, this friend, whom I've known for over twenty years, looks no different to me. Actually, almost anyone I've ever been attracted to sexually, I still find attractive, which is kind of remarkable. I also know that when I first contemplated getting divorced from my husband of 24 years, it was inconceivable to think of myself as a "divorced woman" -- it just didn't seem to be me ... yet now, 20 years later, it seems very much a part of who I am. So the task before me is incorporating this new body into the "me" I have in my head. And that is complicated by the way breasts are fraught with meanings having to do with femininity, desirability, and sexuality. Even though I'm in my sixties, oddly enough.
What made this odd, folks, and I'm being brutally honest here, is that my very first reaction was the flash thought, "You know, he's not unattractive, maybe we could be lovers now that he's available." Or somehow that thought was mixed with real compassion for how terrible it must have been for both of them. When he showed no sign of having the same thought, I found myself wondering if my mastectomy turned him off. This sort of thing happens to me all the time, and I'm never sure whether I'm just more selfish than other people, or if many people have these reactions and don't have the foolishness to talk about them or even think about them.
Ugh. Sigh. His story was another instance of perspective on how lucky I am to have a good prognosis compared to so many others. Yet I am still struggling with envy for every two-breasted woman on this planet, which makes no sense. I was helped somewhat recently by a long conversation with a close friend who argued that it's okay to feel bad about your own loss while having perspective about the suffering of others at the same time, that it's not a suffering contest.
This friend and I also talked about the interesting question of how we see ourselves as continuous. How do we incorporate changes like losses in our lives? People are often shocked to see pictures of themselves as they age, the way people are shocked by hearing their voices on a tape recorder. Yet the changes of aging are gradual, which probably helps. For example, this friend, whom I've known for over twenty years, looks no different to me. Actually, almost anyone I've ever been attracted to sexually, I still find attractive, which is kind of remarkable. I also know that when I first contemplated getting divorced from my husband of 24 years, it was inconceivable to think of myself as a "divorced woman" -- it just didn't seem to be me ... yet now, 20 years later, it seems very much a part of who I am. So the task before me is incorporating this new body into the "me" I have in my head. And that is complicated by the way breasts are fraught with meanings having to do with femininity, desirability, and sexuality. Even though I'm in my sixties, oddly enough.
Wednesday, February 1, 2012
Not Inspirational
I want to be upfront: if you're looking for inspiration or warm fuzzies, you won't find it in this post. I tend in general not to have a Positive Outlook on Life. On the other hand, I personally would rather read something that is true, even brutally true, than the usual mush written in the interest of being comforting.
When someone like me has some bad days, they can be very bad. The last couple of days were in some ways the worst since my surgery. Physically I'm coming along, maybe even turned a corner. Today I wore a regular bra for the first time, and it was okay, so that's a milestone. But the struggle I have with my appearance sans bra is looming greater than ever.
It comes down to this: I hate my new lopsided look. OK, I'll be blunt...it's freakish and ugly, at least that's how it appears to me. I don't see how I can ever get reconciled to it, and sometimes, frankly, I wish I had not decided to have the surgery, or at least had not been too cowardly about pain to try an implant. (Though that would have looked weird at best, and might have been an ongoing discomfort.) This is what I'm dealing with now.
The reason for the dip in my mood had to do with issues in the rest of my life, or maybe it's the other way around...maybe those issues seemed more depressing because my spirits were already in a fragile state. At any rate, two nights of waking at 3 am after dreams of frustration (missing a bus, being stranded out in nowhere with no way to get home) didn't help. And yesterday when I went to a class called Yoga for Cancer Victims (not really, but sort of), I found myself getting dizzy every time we went from lying down to sitting and back again. Not sure why -- maybe lack of sleep and not enough lunch. It didn't help to relax me, just made me feel worse.
Well, the sun will come out tomorrow, Orphan Annie said, and at least I'll be around to see that. Or so I think. That's the best I can do as Suzy Creamcheese at the moment.
When someone like me has some bad days, they can be very bad. The last couple of days were in some ways the worst since my surgery. Physically I'm coming along, maybe even turned a corner. Today I wore a regular bra for the first time, and it was okay, so that's a milestone. But the struggle I have with my appearance sans bra is looming greater than ever.
It comes down to this: I hate my new lopsided look. OK, I'll be blunt...it's freakish and ugly, at least that's how it appears to me. I don't see how I can ever get reconciled to it, and sometimes, frankly, I wish I had not decided to have the surgery, or at least had not been too cowardly about pain to try an implant. (Though that would have looked weird at best, and might have been an ongoing discomfort.) This is what I'm dealing with now.
The reason for the dip in my mood had to do with issues in the rest of my life, or maybe it's the other way around...maybe those issues seemed more depressing because my spirits were already in a fragile state. At any rate, two nights of waking at 3 am after dreams of frustration (missing a bus, being stranded out in nowhere with no way to get home) didn't help. And yesterday when I went to a class called Yoga for Cancer Victims (not really, but sort of), I found myself getting dizzy every time we went from lying down to sitting and back again. Not sure why -- maybe lack of sleep and not enough lunch. It didn't help to relax me, just made me feel worse.
Well, the sun will come out tomorrow, Orphan Annie said, and at least I'll be around to see that. Or so I think. That's the best I can do as Suzy Creamcheese at the moment.
Friday, January 27, 2012
Support Group, Thursday Version
The Thursday support group at Sloan-Kettering could not be more different than Tuesday's group in midtown. For one thing, it's run by two professionals, long-time social workers at the hospital who have been doing this for many years (I remember one of them from my first bout with cancer twelve years ago). The volunteer at SHARE on Tuesday was an extremely nice woman and not unskilled, but these two Thursday ladies know what they're doing --- they're large (not literally) and IN CHARGE. They run the discussion with a tight rein, make sure everyone is brought in by asking individuals leading questions, and dispense information, wisdom, interpretation and emotional comfort with a sure hand.
So it was a less queasy experience than Tuesday's, though I kind of missed that feeling of being with people very much unlike those I normally encounter. The women here seemed more middle-class, more articulate, more savvy in general. They included a professor at a college five hours away who had just had a mastectomy and implant, two women with young children, and a 73 year old former dancer. Most were undergoing radiation or chemotherapy, or both, or had just finished. The younger ones had been thrown into menopause, which caused debilitating depression, and for one, the consequent loss of her job. No one there had metastatic cancer -- I guess they're in the separate group for those with Stage Four that meets another day.
There was one moment that upset me: the professor was complaining that the schedule for radiation is annoyingly erratic and unpredictable. She was told that they reserve the mornings for children, who have to be anesthetized before radiation because they cannot keep still. Morning is best for them since they are not allowed to eat before the anesthesia, and they would have to go hungry all day while waiting. Sure enough, she said, there was a four year old coming out with his head on his mommy's knee last time she went early. That is, she said, it was hard to tell if it was a boy or girl, because of the lack of hair. I cried. One of my grandsons is four.
It's easy to forget, when I'm whining about my poor lost breast, that this is a brutal disease that attacks the innocent and the not so innocent alike, the very young as well as the elderly. I must remember that when I become too absorbed in myself.
So it was a less queasy experience than Tuesday's, though I kind of missed that feeling of being with people very much unlike those I normally encounter. The women here seemed more middle-class, more articulate, more savvy in general. They included a professor at a college five hours away who had just had a mastectomy and implant, two women with young children, and a 73 year old former dancer. Most were undergoing radiation or chemotherapy, or both, or had just finished. The younger ones had been thrown into menopause, which caused debilitating depression, and for one, the consequent loss of her job. No one there had metastatic cancer -- I guess they're in the separate group for those with Stage Four that meets another day.
There was one moment that upset me: the professor was complaining that the schedule for radiation is annoyingly erratic and unpredictable. She was told that they reserve the mornings for children, who have to be anesthetized before radiation because they cannot keep still. Morning is best for them since they are not allowed to eat before the anesthesia, and they would have to go hungry all day while waiting. Sure enough, she said, there was a four year old coming out with his head on his mommy's knee last time she went early. That is, she said, it was hard to tell if it was a boy or girl, because of the lack of hair. I cried. One of my grandsons is four.
It's easy to forget, when I'm whining about my poor lost breast, that this is a brutal disease that attacks the innocent and the not so innocent alike, the very young as well as the elderly. I must remember that when I become too absorbed in myself.
Wednesday, January 25, 2012
Cancer Support Group, Tuesday Version
To continue my proactivity program, yesterday I attended a free meeting of a cancer support workshop in midtown sponsored by the volunteer organization SHARE. There were twelve of us at this workshop, which turned out to be on the theme of Loneliness after Cancer. This wasn't what I had in mind, exactly -- I was picturing sharing feelings about having had breast cancer surgery, specifically mastectomy, but hell, I know a thing or two about being lonely, so no problem.
Was it supportive? Not really, but it was a very moving and not least, entertaining two hours, I can tell you that. We spent most of the time "going around" the table telling our personal stories. All the women were my age or older, and all were alone -- widowed, divorced, never married -- except for a deaf woman who has a long-term female partner who lives in another state. I was stunned by the sorrow and burdens these women have shouldered alone: the elegant former fashion designer, who lived many years in Paris, now alone in NYC after a break-up (and was blow-you-away beautiful at age sixty-ish), the plump, sweet woman who has no family or friends in the area because they've all gone down South, the widow who keeps her house the way it was when her beloved husband died...all of them.
And then there were the two nutty ones. One gave us an overly detailed monologue of her many, many ailments, but she was Noreen Normal compared to the last member of the circle to speak, an innocent-looking gray-haired old lady with rimless glasses who relished her time at the metaphorical microphone so much that she immediately launched into a diatribe about everyone who was against her and has attacked her (including, embarrasingly, the "Mexican janitor" in her building, "those people" in her neighborhood, and the "Russian mob" who tried to climb into her window...I wondered how the black and Latina members of the group felt about that.) Unfortunately she could not be persuaded to stop speaking, and when the wonderful volunteer who was our leader gently suggested she had to "finish up because our time is almost done," Gray-Haired Lady spit bitterly, "Oh,SO...I'm not allowed to speak now? I can't say what I want to say?". Yet no one was mean to her, though she got on all our nerves.
The women were so different from one another, though united by this common theme of cancer and loneliness for this one afternoon. This is something I enjoy, hearing the stories of people and seeing how they do or do not cope. They spoke about how hard it is to make friends "at my time of life", how they try to reach out but find themselves isolated at home, how they worry that they will die on the living room floor and no one will know. Almost no one had children and grandchildren, as I do, and I found myself extremely thankful that I have those strong connections, that intense love in my life.
Tomorrow is Cancer Support Group Number Two, this one led by the lovely social worker at Sloan-Kettering who talked me down when I was phobic before the surgery. I'm looking forward to it. Really, I could go to support groups every day. Also, another item on my Proactive List was checked off today...yes, there are free (I said FREE) exercise classes for breast cancer patients/survivors at the local community center, paid for by a charitable organization. I plan to go next week to the yoga class. Since spending too much time at home has been making me a bit crazy, this is clearly the way to go.
Was it supportive? Not really, but it was a very moving and not least, entertaining two hours, I can tell you that. We spent most of the time "going around" the table telling our personal stories. All the women were my age or older, and all were alone -- widowed, divorced, never married -- except for a deaf woman who has a long-term female partner who lives in another state. I was stunned by the sorrow and burdens these women have shouldered alone: the elegant former fashion designer, who lived many years in Paris, now alone in NYC after a break-up (and was blow-you-away beautiful at age sixty-ish), the plump, sweet woman who has no family or friends in the area because they've all gone down South, the widow who keeps her house the way it was when her beloved husband died...all of them.
And then there were the two nutty ones. One gave us an overly detailed monologue of her many, many ailments, but she was Noreen Normal compared to the last member of the circle to speak, an innocent-looking gray-haired old lady with rimless glasses who relished her time at the metaphorical microphone so much that she immediately launched into a diatribe about everyone who was against her and has attacked her (including, embarrasingly, the "Mexican janitor" in her building, "those people" in her neighborhood, and the "Russian mob" who tried to climb into her window...I wondered how the black and Latina members of the group felt about that.) Unfortunately she could not be persuaded to stop speaking, and when the wonderful volunteer who was our leader gently suggested she had to "finish up because our time is almost done," Gray-Haired Lady spit bitterly, "Oh,SO...I'm not allowed to speak now? I can't say what I want to say?". Yet no one was mean to her, though she got on all our nerves.
The women were so different from one another, though united by this common theme of cancer and loneliness for this one afternoon. This is something I enjoy, hearing the stories of people and seeing how they do or do not cope. They spoke about how hard it is to make friends "at my time of life", how they try to reach out but find themselves isolated at home, how they worry that they will die on the living room floor and no one will know. Almost no one had children and grandchildren, as I do, and I found myself extremely thankful that I have those strong connections, that intense love in my life.
Tomorrow is Cancer Support Group Number Two, this one led by the lovely social worker at Sloan-Kettering who talked me down when I was phobic before the surgery. I'm looking forward to it. Really, I could go to support groups every day. Also, another item on my Proactive List was checked off today...yes, there are free (I said FREE) exercise classes for breast cancer patients/survivors at the local community center, paid for by a charitable organization. I plan to go next week to the yoga class. Since spending too much time at home has been making me a bit crazy, this is clearly the way to go.
Monday, January 23, 2012
I Am Proactive!
Now that I am feeling my energy come back day by day, I've had a burst of what you might call proactivity (is that really a word?). I spent Friday afternoon on the Internet and phone, trying to find a support group for women who have had a mastectomy, and trying to clarify what benefits I am eligible for in the way of breast forms and special bras.
I located two support groups, first one at the hospital where I am treated, Memorial Sloan-Kettering on Thursdays, and then one sponsored by a group called SHARE, on Tuesdays. I called both because I couldn't reach either one at first, then found myself agreeing to go to two meetings this week,which is overkill. I know I don't want to belong to two groups, but I suppose I'll go and see. Somehow it's just like me to get into these awkward situations (go once and then not go back to one or both?).
The insurance question turned out to be both more complicated and more frustrating. First the United Health Care rep couldn't answer the benefits question because I didn't have "codes" for what they warmly call "Durable Medical Equipment, Subcategory Prothesis." So I had to call the hospital for the codes. No answer, of course (does anyone, anywhere who has information ever answer the phone?). Then when I finally got the codes today, I ran into a UHC rep on the phone who had no idea what to tell me -- she recommended I call their affiliated Cancer Resource Service, they'd know. So I go through all the stupefyingly boring questions (name, address, phone, date of birth, member ID number, etc. etc.) for the millionth time with the Cancer Resource Service, whose rep painstakingly registers me for the service before I get to ask the benefits question. Oh, he says, we don't handle that here, we just give medical advice...but the insurance rep should have those answers. Except she didn't.
Meanwhile, I would love to get something plausible to stuff the bra I already have until I'm healed enough to get fitted with the Durable Medical Device, Subcategory Prosthesis. But that turns out to be maddeningly complicated too. The UHC rep read aloud that I am allowed one bra and one prosthesis -- let me call it a breast form before I spit at someone -- and it must be, she read, "the most cost-effective one." How do I know which that is before I buy it? I asked. She was flustered and basically said she didn't know. So I called a boutique I found online (on Friday, when I was being proactive -- naturally I had to leave a message there too) that specializes in this sort of item -- it's tellingly named My Secret, which makes me feel like I'll be entering the store in a gray raincoat and emerging with a shameful item in a plain brown wrapper. You can buy both the silicone breast form and also a light foam one, the saleswoman told me, as long as you have two different prescriptions from the doctor.
Well, I have one presciption, and I'm not about to go to the trouble of getting another and buying two (they're $120-200 each) unless I hear for sure that two are covered under my insurance plan. So back to another UHC rep (after giving all my info a million and one times), who was brighter than the first one and actually asked someone there at the UHC store, or whatever it is. Now this rep insists that there was a bill passed in Congress that a post-mastectomy patient can have as many forms and bras covered as she wants, as long as you don't buy more than one a day, no prescription needed. So now I've gone from fuming at how limited the coverage is to doubting it could possibly be that generous. Really, they'll pay for 365 bras and forms as long as I purchase them on separate days? Do I believe that?
Sigh. Now I know why people complain about (private) insurance.
I located two support groups, first one at the hospital where I am treated, Memorial Sloan-Kettering on Thursdays, and then one sponsored by a group called SHARE, on Tuesdays. I called both because I couldn't reach either one at first, then found myself agreeing to go to two meetings this week,which is overkill. I know I don't want to belong to two groups, but I suppose I'll go and see. Somehow it's just like me to get into these awkward situations (go once and then not go back to one or both?).
The insurance question turned out to be both more complicated and more frustrating. First the United Health Care rep couldn't answer the benefits question because I didn't have "codes" for what they warmly call "Durable Medical Equipment, Subcategory Prothesis." So I had to call the hospital for the codes. No answer, of course (does anyone, anywhere who has information ever answer the phone?). Then when I finally got the codes today, I ran into a UHC rep on the phone who had no idea what to tell me -- she recommended I call their affiliated Cancer Resource Service, they'd know. So I go through all the stupefyingly boring questions (name, address, phone, date of birth, member ID number, etc. etc.) for the millionth time with the Cancer Resource Service, whose rep painstakingly registers me for the service before I get to ask the benefits question. Oh, he says, we don't handle that here, we just give medical advice...but the insurance rep should have those answers. Except she didn't.
Meanwhile, I would love to get something plausible to stuff the bra I already have until I'm healed enough to get fitted with the Durable Medical Device, Subcategory Prosthesis. But that turns out to be maddeningly complicated too. The UHC rep read aloud that I am allowed one bra and one prosthesis -- let me call it a breast form before I spit at someone -- and it must be, she read, "the most cost-effective one." How do I know which that is before I buy it? I asked. She was flustered and basically said she didn't know. So I called a boutique I found online (on Friday, when I was being proactive -- naturally I had to leave a message there too) that specializes in this sort of item -- it's tellingly named My Secret, which makes me feel like I'll be entering the store in a gray raincoat and emerging with a shameful item in a plain brown wrapper. You can buy both the silicone breast form and also a light foam one, the saleswoman told me, as long as you have two different prescriptions from the doctor.
Well, I have one presciption, and I'm not about to go to the trouble of getting another and buying two (they're $120-200 each) unless I hear for sure that two are covered under my insurance plan. So back to another UHC rep (after giving all my info a million and one times), who was brighter than the first one and actually asked someone there at the UHC store, or whatever it is. Now this rep insists that there was a bill passed in Congress that a post-mastectomy patient can have as many forms and bras covered as she wants, as long as you don't buy more than one a day, no prescription needed. So now I've gone from fuming at how limited the coverage is to doubting it could possibly be that generous. Really, they'll pay for 365 bras and forms as long as I purchase them on separate days? Do I believe that?
Sigh. Now I know why people complain about (private) insurance.
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