Many bloggers have caught a lot of flack for not being gung-ho SGK/Pinktober rah-rah.
Part of the problem is that the Pinking of Breast Cancer denies reality for many. Of course, we all want to hear stories about long term survivors and those whose lives weren't drastically changed. Even more, we want to know about people who have survived treatment and then climbed Mt. Everest or sailed around the world in a hand-hewn canoe (obviously a canoe with a sail...you get my drift....no pun intended).
That all can provide inspiration, hope, and by golly it's happy.
But the reality which is denied is much more private. It's where none of us really wants to dwell. Yet, once an endurer ends up in that reality, it's not such a happy place, and it really isn't all that pink implies. It's much more shades of gray. The hard part is, not a single one of us has any way of knowing which reality will be granted to us.
Here's a wonderful blog that shows a different reality. It's loving and touching, and the opposite of the pinkality that is so often portrayed in the media. You should check it out. Angelo and Jen are an amazing couple, full of love and compassion. Angelo's blog shows the gray side of the journey.
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Sunday, December 11, 2011
Sunday, November 20, 2011
Memes, again.
I was just copied on another "awareness" meme on Facebook. This time, the person who sent it to me is a long time, much loved, highly respected friend of mine. One of those awesome friends I met online over a decade ago and whom I have grown to love deeply. She is, in many ways, a much loved mother figure to me. And I don't want to hurt her feelings although I fear I may have. I hope, if she reads this, she realizes that this in no way changes my feelings toward and about her.
Anyway, this new meme deals with your birth month and date. Each month is linked to a country. You then post "I'm going to ______ for X number of months" with the number being the date of your birth. So, I'd post, "I'm going to France for 27 months." Of course, you are supposed to keep it secret from men, and in doing so, we raise awareness for breast cancer.
This one really annoys me. Maybe because, we just came out of Pinktober, which is supposed to raise awareness. Maybe because so many women with breast cancer or who have come through breast cancer can't even begin to wrap their heads around the opportunity to travel to a foreign country for many months. We have no way to afford it. We can't even dream of taking time off work because we carefully hoard our vacation and leave days, always wondering if we will need them for further treatment. Maybe because it's so US-centric.
Here's what I wrote about it to the entire list of women (most of whom are strangers to me). I'm sure I ruffled some feathers, but I just couldn't stop myself.
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Anyway, this new meme deals with your birth month and date. Each month is linked to a country. You then post "I'm going to ______ for X number of months" with the number being the date of your birth. So, I'd post, "I'm going to France for 27 months." Of course, you are supposed to keep it secret from men, and in doing so, we raise awareness for breast cancer.
This one really annoys me. Maybe because, we just came out of Pinktober, which is supposed to raise awareness. Maybe because so many women with breast cancer or who have come through breast cancer can't even begin to wrap their heads around the opportunity to travel to a foreign country for many months. We have no way to afford it. We can't even dream of taking time off work because we carefully hoard our vacation and leave days, always wondering if we will need them for further treatment. Maybe because it's so US-centric.
Here's what I wrote about it to the entire list of women (most of whom are strangers to me). I'm sure I ruffled some feathers, but I just couldn't stop myself.
------------
- I'm not knocking anyone, but if OCTOBER itself doesn't raise awareness, playing little games isn't either. Did anyone here go do a BSE or make an appointment for a mammo after getting it? You want awareness? I'll send you a picture of my chest. You can post it on your fridge. I bet I could find 12 women to send you pictures of their mutilated chests and you could make a calendar out of them. Maybe we all define awareness differently.
I think that these little games make bc seem like a game, like something that people either win or lose. Sadly, most of us who "win" only do so temporarily. And win at great cost physically. My left arm will never be the same. Every time I move it, I feel where lymph node removal and radiation have damaged it. I have to massage it in a particular way every day or it swells. I have to wear a really not sexy or fun compression sleeve which just makes me stand out all the more. Even with tank tops, especially when exercising, every day. I can't get on a plane without wondering or worrying if doing so will fuck it up for the rest of my life. I have heart and lung damage from treatments, ongoing treatments. Great because heart disease kills more women than breast cancer.
Here's something else that I've written about awareness.
http://desideratajourney.blogspot.com/2011/05/awareness-pt-2.html
and I'm not feeling sorry for myself or whining. Just saying that it's not a game. And it shouldn't be secret. Because this affects men, too. They get bc. And they live with those of us who have had it.
Here's another little tidbit about awareness....early detection doesn't really save lives or increase survival rates. It improves quality of life, perhaps, because treatments don't have to be as invasive. But recurrence rates, over time, don't really change.
I have a 19 yo student who has bc. I have a lot of friends who nursed for many years who are in their 30s who were diagnosed. Our treatments age us 10 years. They damage our brains. They increase our odds for Alzheimer disease. I have a brain that now scans like that of a 20 or 30 year drug addict. I've lost IQ points.
It's just not fun. And to make the awareness memes fun and silly is, in my opinion, really disrespectful. I struggle to play real games now. I'm forbidden to play some games. I can't play volleyball. I struggle with the memory games that my kids like to play. I can't retrieve words for trivia games.
So, yeh. I probably shouldn't have said anything, but I couldn't figure out how to get my name off this.
Monday, September 5, 2011
How many weeks? Where do you like it? What color? Memes for a cause
DISCLAIMER: I apologize for letting this blog lie dormant lately. I owe a HUGE apology for not handling my time better and keeping up with it. Also, tonight's topic is one I've been dwelling on for a few days, but just now sat down to work on. This will be neither well organized nor clear, I'm guessing. I'm trying to cram in a little bit of TV watching at the same time before the start of a particularly hectic week during a particularly hectic semester.
*************************************************************************************
Social networking has given rise to the phenomenon of various memes of all sorts. However, one particular type of internet meme is the "awareness meme." The most basic of these are found on facebook and take the form of "25 Things" or whatever. If you are on Facebook, you've seen these. "25 things I've never told anyone" or "Put your ipod on shuffle" or whatever. Another common one is the "cause" meme. This type always ends with "if you care about cause X, post this to your status....only a certain percentage of you will" (implying that if one doesn't spam their friends with statistics about child abuse or leukemia or fire fighters or nurses or whatever, one doesn't care. Again, whatever.
Some of the oddest memes in the category of the cause meme are the "keep this secret from men" memes. Two years ago, this meme took the shape of an oblique reference to bra color, the following year, it was a weird reference to where women hang their purses--masquerading as a sex reference: "I like it on the kitchen counter" or "I like it under the table" or "I like it in the closet." This year, it's something really, really weird: a misleading statement indicating a woman is pregnant and craving a specific candy. What all of these odd memes have in common is that they are, in theory--and theory only--, intended to raise awareness of breast cancer.
Even as I type this, it makes no sense.
I know no one who spreads these intends to be anything but helpful and supportive. So I really feel kind of bad for saying this, and I sincerely hope I hurt no one's feelings.
But dang, these things trivialize breast cancer.
And they don't raise awareness. Remember, they are secret. They are coded. Only people in the know can participate. It's just stupid.
Specifically:
1) Keeping this a secret from men serves what purpose? Men can get breast cancer, too. These poor men are often overlooked. What an awkward cancer for a man. How does a man say, "I have breast cancer" to his buddies? Where does a man go for support? Also, men in the lives of women with breast cancer are deeply affected by breast cancer. The lives of my husband and my three sons will never, ever be the same since my diagnosis. More than worrying about my own life, I've worried about theirs, especially my sons'. Cancer has affected their grades, their personalities, their sense of security and fairness, and their futures. Trust me, they are NOT better off for the experience. None of us are.
2) When it comes to the bra color meme, what? Because of breast cancer, I'll never have to wear a bra again. Seriously. Even with reconstruction, my breasts are so unnatural that a bra is redundant. Oh, but that doesn't matter because thanks to radiation, the tissue in my chest is so tight that it still feels like I have the band of a bra around my chest. I'm not sure that I'd even be capable of wearing a bra. Thanks to radiation and/or surgery, I seem to have some nerve damage in my left arm, resulting in carpel tunnel and what is apparently untreatable tendonitis in my elbow. Add to that a minor case of lymphedema in that arm, and a bra strap on my shoulder would probably cause tingling, numbness, and maybe more swelling.
I'm not alone. Some breast cancer endurers don't need bras because they don't have breasts. Others need special bras to hold their prosthetic breasts. Those don't tend to come in sexy colors.
The bra meme was trivializing. Saddening.
3) The purse meme, alluding to where one likes to have sex, is an odd one. Breast cancer, although the disease contains the word "breast," is not sexy. A mastectomy is not sexy. It's an amputation. Some of use even have "ghost pains" or sensations where our breasts should be. I still feel the nerves that used to lead to my nipples--tee hee she said nipples--used to be. Only I don't have nipples. I can't even feel sensation on the front of my breasts. "Feel your boobies!" "Save the ta-tas!" "Save second base!" Sensationalizing the sexiness of breasts, all of it, is misleading as all hell. Being nauseous, bald, bloated, and in pain does nothing to make a woman feel sexy. Lots of women are suddenly thrust into menopause, regardless of their age, when they start chemo. Again, not sexy. And what about those poor men who get breast cancer? How sexy can they feel? And then there is the insanely huge number of strangers who get to look at, feel, discuss, take pictures of, and mutilate the breast cancer endureres breasts? Not sexy, especially when those ever so attractive hospital gowns are involved, doubly so when in a hospital gown under fluorescent lights.
A meme supposedly intended to raise awareness but really makes it into a sexy little game is insulting. Totally.
4) This year's "I'm X number of weeks and craving Y" meme is probably the worst. For starters, who ever thought of it is not very forward thinking. Slap that statement up on facebook and suddenly people start congratulating you...and then feeling like idiots when you say, "Oh, I'm not pregnant!" How many people out there thought that they were finally going to be grandparents? That a true miracle had occufred, only to find out it's some odd joke with a purpose kind of thing? What about the husbands reading their wives' statuses thinking, "Oh. My. God! I don't want another kid! I thought we'd taken care of that!!!! Now what?!?"
Worse, though, are the people who have been struggling with infertility who have to see these statuses. Their struggle turned into a joke of sorts. I can't even imagine what this meme has done to people with infertility.
But in the realm of breast cancer, it's doubly insulting and insensitive.
Chemo has a way of making people infertile. Some regain their fertility. Others never do.
Many women opt to undergo oopherectomies--having their ovaries removed--to prevent more cancer. Some who are BRCA positive (gene positive) have much higher odds of passing the gene on to their future children, making pregnancy a real double edged sword. Those same women have a much higher incidence of other "female" cancers, cancers which lead to--you guessed it--infertility.
Estrogen, a necessary female hormone for "cycling", also increases one's risk of breast cancer. So, just being a woman who is fertile is a risk.
So this meme is simply thoughtless.
5) But the worst of all of this is that memes are not going to raise awareness. I'm not even sure what it means "to raise awareness." I've written about awareness in the past, both here as well as here.
What I want people to become aware of is that breast cancer isn't fun. It isn't pretty. It's not feminine. It's not sexy. Most of us don't just get on with our lives. We are irrevocably changed. We are forced to make the best of it, for the most part. What other option is there? It doesn't "make us better people." We were pretty darn good people before this. Nothing we did caused this, and there's really very little people can do to prevent it. Well, having breast buds removed at birth would be a good preventative. Beyond that, there's not much that an individual can do. Healthy people get breast cancer. Thin people get breast cancer. Vegetarians and happy people get breast cancer. Old people and young people get breast cancer. If you have breast tissue, you are at risk.
No one wants to think that way, but that's what people need to be aware of.
And that's what's been on my mind lately.
Now, before I head off to bed so that I can get up at some unholy hour to go see my Occupational Therapist for more wasted time trying to fix my tendonitis--which is not improving--and over which I am very depressed, I'll give a brief update of what's going on here at the homestead:
School is back in session. The Eldest has left to participate in www.geojourney.org for his first semester of college. I've talked to him twice since he left. He's having fun. He also has officially moved out of the house and has an apartment on the other side of town for when he returns. In other words, he's fledged and left the nest. The Feral Third has moved into The Eldest's bedroom and has new furniture, new design, and it's all preteen kind of stuff. The Middle is doing well in school this year and is actively working with Organizing for America as an intern and is heavily involved in helping to defeat HB 194 and SB 5 as well as helping a friend of ours who is running for city council. He got to meet President Obama in June, and I think he's still walking in air from that experience.
I'm back in the classroom, teaching my typical fall schedule as well as an extra course to fill in for a colleague who has been struggling with cancer and a liver transplant. The great news is, he's doing fantastically, and for that we are all exceedingly happy. I'm also finally in a position to do more than just show up and teach. I'm actually excited to be revamping some of my assignments this semester and also participating in a learning community.
The Mister Mister, who has been out of work for nearly two years has finally found a sustainable job that pays more than his unemployment compensation. I don't want to talk too much about that because I don't want to jinx it.
The biggest news, though, is that we've opened our home to an 11 year old boy whose family is homeless. His story isn't really mine to tell here. However, I will say he's the eldest of 5 children. His father isn't in the picture at the moment. His mother is out of work and has nowhere to live. None of us really have known this child nor his family other than as others who sit on the sidelines at soccer games. He plays on the same team as The Feral Third. I figured that we have the capacity, and he's a child in need. So, he's here during the week for now. Supposedly, I'll be getting temporary legal custody tomorrow. My parents gave me the opportunity to expand my horizons by inviting foster kids to live with us when I was young. It wasn't always easy, but sometimes growth isn't. I think my brother and I are better for it. I know my foster sisters were. I hope that this experience also ends up having a positive net gain for all involved.
It's nice to be back here. I've missed it.
One final thing: I'm inviting people to be guest bloggers here in October, "Breast Cancer Awareness" month. If you'd like to be a guest, let me know! I look forward to hearing from you:)
*************************************************************************************
Social networking has given rise to the phenomenon of various memes of all sorts. However, one particular type of internet meme is the "awareness meme." The most basic of these are found on facebook and take the form of "25 Things" or whatever. If you are on Facebook, you've seen these. "25 things I've never told anyone" or "Put your ipod on shuffle" or whatever. Another common one is the "cause" meme. This type always ends with "if you care about cause X, post this to your status....only a certain percentage of you will" (implying that if one doesn't spam their friends with statistics about child abuse or leukemia or fire fighters or nurses or whatever, one doesn't care. Again, whatever.
Some of the oddest memes in the category of the cause meme are the "keep this secret from men" memes. Two years ago, this meme took the shape of an oblique reference to bra color, the following year, it was a weird reference to where women hang their purses--masquerading as a sex reference: "I like it on the kitchen counter" or "I like it under the table" or "I like it in the closet." This year, it's something really, really weird: a misleading statement indicating a woman is pregnant and craving a specific candy. What all of these odd memes have in common is that they are, in theory--and theory only--, intended to raise awareness of breast cancer.
Even as I type this, it makes no sense.
I know no one who spreads these intends to be anything but helpful and supportive. So I really feel kind of bad for saying this, and I sincerely hope I hurt no one's feelings.
But dang, these things trivialize breast cancer.
And they don't raise awareness. Remember, they are secret. They are coded. Only people in the know can participate. It's just stupid.
Specifically:
1) Keeping this a secret from men serves what purpose? Men can get breast cancer, too. These poor men are often overlooked. What an awkward cancer for a man. How does a man say, "I have breast cancer" to his buddies? Where does a man go for support? Also, men in the lives of women with breast cancer are deeply affected by breast cancer. The lives of my husband and my three sons will never, ever be the same since my diagnosis. More than worrying about my own life, I've worried about theirs, especially my sons'. Cancer has affected their grades, their personalities, their sense of security and fairness, and their futures. Trust me, they are NOT better off for the experience. None of us are.
2) When it comes to the bra color meme, what? Because of breast cancer, I'll never have to wear a bra again. Seriously. Even with reconstruction, my breasts are so unnatural that a bra is redundant. Oh, but that doesn't matter because thanks to radiation, the tissue in my chest is so tight that it still feels like I have the band of a bra around my chest. I'm not sure that I'd even be capable of wearing a bra. Thanks to radiation and/or surgery, I seem to have some nerve damage in my left arm, resulting in carpel tunnel and what is apparently untreatable tendonitis in my elbow. Add to that a minor case of lymphedema in that arm, and a bra strap on my shoulder would probably cause tingling, numbness, and maybe more swelling.
I'm not alone. Some breast cancer endurers don't need bras because they don't have breasts. Others need special bras to hold their prosthetic breasts. Those don't tend to come in sexy colors.
The bra meme was trivializing. Saddening.
3) The purse meme, alluding to where one likes to have sex, is an odd one. Breast cancer, although the disease contains the word "breast," is not sexy. A mastectomy is not sexy. It's an amputation. Some of use even have "ghost pains" or sensations where our breasts should be. I still feel the nerves that used to lead to my nipples--tee hee she said nipples--used to be. Only I don't have nipples. I can't even feel sensation on the front of my breasts. "Feel your boobies!" "Save the ta-tas!" "Save second base!" Sensationalizing the sexiness of breasts, all of it, is misleading as all hell. Being nauseous, bald, bloated, and in pain does nothing to make a woman feel sexy. Lots of women are suddenly thrust into menopause, regardless of their age, when they start chemo. Again, not sexy. And what about those poor men who get breast cancer? How sexy can they feel? And then there is the insanely huge number of strangers who get to look at, feel, discuss, take pictures of, and mutilate the breast cancer endureres breasts? Not sexy, especially when those ever so attractive hospital gowns are involved, doubly so when in a hospital gown under fluorescent lights.
A meme supposedly intended to raise awareness but really makes it into a sexy little game is insulting. Totally.
4) This year's "I'm X number of weeks and craving Y" meme is probably the worst. For starters, who ever thought of it is not very forward thinking. Slap that statement up on facebook and suddenly people start congratulating you...and then feeling like idiots when you say, "Oh, I'm not pregnant!" How many people out there thought that they were finally going to be grandparents? That a true miracle had occufred, only to find out it's some odd joke with a purpose kind of thing? What about the husbands reading their wives' statuses thinking, "Oh. My. God! I don't want another kid! I thought we'd taken care of that!!!! Now what?!?"
Worse, though, are the people who have been struggling with infertility who have to see these statuses. Their struggle turned into a joke of sorts. I can't even imagine what this meme has done to people with infertility.
But in the realm of breast cancer, it's doubly insulting and insensitive.
Chemo has a way of making people infertile. Some regain their fertility. Others never do.
Many women opt to undergo oopherectomies--having their ovaries removed--to prevent more cancer. Some who are BRCA positive (gene positive) have much higher odds of passing the gene on to their future children, making pregnancy a real double edged sword. Those same women have a much higher incidence of other "female" cancers, cancers which lead to--you guessed it--infertility.
Estrogen, a necessary female hormone for "cycling", also increases one's risk of breast cancer. So, just being a woman who is fertile is a risk.
So this meme is simply thoughtless.
5) But the worst of all of this is that memes are not going to raise awareness. I'm not even sure what it means "to raise awareness." I've written about awareness in the past, both here as well as here.
What I want people to become aware of is that breast cancer isn't fun. It isn't pretty. It's not feminine. It's not sexy. Most of us don't just get on with our lives. We are irrevocably changed. We are forced to make the best of it, for the most part. What other option is there? It doesn't "make us better people." We were pretty darn good people before this. Nothing we did caused this, and there's really very little people can do to prevent it. Well, having breast buds removed at birth would be a good preventative. Beyond that, there's not much that an individual can do. Healthy people get breast cancer. Thin people get breast cancer. Vegetarians and happy people get breast cancer. Old people and young people get breast cancer. If you have breast tissue, you are at risk.
No one wants to think that way, but that's what people need to be aware of.
And that's what's been on my mind lately.
Now, before I head off to bed so that I can get up at some unholy hour to go see my Occupational Therapist for more wasted time trying to fix my tendonitis--which is not improving--and over which I am very depressed, I'll give a brief update of what's going on here at the homestead:
School is back in session. The Eldest has left to participate in www.geojourney.org for his first semester of college. I've talked to him twice since he left. He's having fun. He also has officially moved out of the house and has an apartment on the other side of town for when he returns. In other words, he's fledged and left the nest. The Feral Third has moved into The Eldest's bedroom and has new furniture, new design, and it's all preteen kind of stuff. The Middle is doing well in school this year and is actively working with Organizing for America as an intern and is heavily involved in helping to defeat HB 194 and SB 5 as well as helping a friend of ours who is running for city council. He got to meet President Obama in June, and I think he's still walking in air from that experience.
I'm back in the classroom, teaching my typical fall schedule as well as an extra course to fill in for a colleague who has been struggling with cancer and a liver transplant. The great news is, he's doing fantastically, and for that we are all exceedingly happy. I'm also finally in a position to do more than just show up and teach. I'm actually excited to be revamping some of my assignments this semester and also participating in a learning community.
The Mister Mister, who has been out of work for nearly two years has finally found a sustainable job that pays more than his unemployment compensation. I don't want to talk too much about that because I don't want to jinx it.
The biggest news, though, is that we've opened our home to an 11 year old boy whose family is homeless. His story isn't really mine to tell here. However, I will say he's the eldest of 5 children. His father isn't in the picture at the moment. His mother is out of work and has nowhere to live. None of us really have known this child nor his family other than as others who sit on the sidelines at soccer games. He plays on the same team as The Feral Third. I figured that we have the capacity, and he's a child in need. So, he's here during the week for now. Supposedly, I'll be getting temporary legal custody tomorrow. My parents gave me the opportunity to expand my horizons by inviting foster kids to live with us when I was young. It wasn't always easy, but sometimes growth isn't. I think my brother and I are better for it. I know my foster sisters were. I hope that this experience also ends up having a positive net gain for all involved.
It's nice to be back here. I've missed it.
One final thing: I'm inviting people to be guest bloggers here in October, "Breast Cancer Awareness" month. If you'd like to be a guest, let me know! I look forward to hearing from you:)
Sunday, May 15, 2011
Awareness, pt. 2
Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?
The facts aren't that happy. Sure, it's not the death sentence other forms of cancer are. Let's face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn't "if" but "when." I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don't know what the one year survival rate is, but it's not great. Another of my friends was told she'd live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.
But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?
For starters, when we talk about "surviving" with breast cancer, we speak of surviving five years. The term is "the five year survival rate."
Pardon me for not being too chipper about that. I'm coming up on my second cancerversary.
If a woman happens to be Hispanic, which I am not, she's more likely than other women to get aggressive breast cancers and die from breast cancer. Were you aware of that?
I've heard people, endurers as well as the non-effected, say, "At least the tumor is estrogen (or progesterone) receptive. There's a pill for that." Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication. In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn't aware of that fact.
Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It's called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, "you just do herceptin treatments for the rest of your life." Well, that's probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn't work, either. And, the woman dies.
We are also all aware that breast cancer is curable. And that's true. To an extent. Most women don't die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we'd be fine. Cut it out, chop 'em off, radiate 'em. End of story. However, that's not how breast cancer works. There's never, ever a guarantee that even the smallest spot of cancer hasn't sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.
Many of us are aware that there are things we can do to "prevent" breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn't anything that "prevents" breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not "preventative" as we'd like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person's life time risk of getting breast cancer. It's not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn't have to still screen and hope for the best. Many women aren't aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as "preventative" had the gall to ask me if I had a family history, as if...whatever. She said she was counting on nursing to "protect" her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.
Let's talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let's face it, when you are in your late 60s or your 70s or older, "long term" takes on a whole different meaning than when you are in your 20s or 30s or 40s.
And none of this takes into account the negative effects of cancer treatment on a person's general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There's a double-edged sword. Better yet, there's the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, "sometimes fatal." Nothing like killing yourself to stay alive.
Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn't that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!
There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.
I don't think most people are aware of this. That to "survive" does not mean to "get better" and that life isn't always pink and rosy are not parts of awareness.
Yet, we are aware that there's a "cure" out there. In fact, when it comes to breast cancer and pink, "awareness" seems to be synonymous with "cure." However, one would think that if an organization were really, truly concerned about a "cure" their money and focus would go to what...awareness/education? or research? prevention or parties? I'd like my money to go to research and prevention. Check out these charts to see where it really goes.
Just so you are aware.
The facts aren't that happy. Sure, it's not the death sentence other forms of cancer are. Let's face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn't "if" but "when." I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don't know what the one year survival rate is, but it's not great. Another of my friends was told she'd live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.
But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?
For starters, when we talk about "surviving" with breast cancer, we speak of surviving five years. The term is "the five year survival rate."
Pardon me for not being too chipper about that. I'm coming up on my second cancerversary.
If a woman happens to be Hispanic, which I am not, she's more likely than other women to get aggressive breast cancers and die from breast cancer. Were you aware of that?
I've heard people, endurers as well as the non-effected, say, "At least the tumor is estrogen (or progesterone) receptive. There's a pill for that." Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication. In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn't aware of that fact.
Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It's called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, "you just do herceptin treatments for the rest of your life." Well, that's probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn't work, either. And, the woman dies.
We are also all aware that breast cancer is curable. And that's true. To an extent. Most women don't die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we'd be fine. Cut it out, chop 'em off, radiate 'em. End of story. However, that's not how breast cancer works. There's never, ever a guarantee that even the smallest spot of cancer hasn't sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.
Many of us are aware that there are things we can do to "prevent" breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn't anything that "prevents" breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not "preventative" as we'd like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person's life time risk of getting breast cancer. It's not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn't have to still screen and hope for the best. Many women aren't aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as "preventative" had the gall to ask me if I had a family history, as if...whatever. She said she was counting on nursing to "protect" her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.
Let's talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let's face it, when you are in your late 60s or your 70s or older, "long term" takes on a whole different meaning than when you are in your 20s or 30s or 40s.
And none of this takes into account the negative effects of cancer treatment on a person's general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There's a double-edged sword. Better yet, there's the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, "sometimes fatal." Nothing like killing yourself to stay alive.
Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn't that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!
There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.
I don't think most people are aware of this. That to "survive" does not mean to "get better" and that life isn't always pink and rosy are not parts of awareness.
Yet, we are aware that there's a "cure" out there. In fact, when it comes to breast cancer and pink, "awareness" seems to be synonymous with "cure." However, one would think that if an organization were really, truly concerned about a "cure" their money and focus would go to what...awareness/education? or research? prevention or parties? I'd like my money to go to research and prevention. Check out these charts to see where it really goes.
Just so you are aware.
Monday, May 9, 2011
Awareness, pt. 1
Day 1 with the Tykerb, and all is well. Right this very minute, I'm feeling a little queasy; however, who isn't if they really focus on it? Overall, it was a good day. Technically, I accomplished little. This is supposed to be the week that I deep clean all the public areas of our house. Yeah, about that.....
I did manage to make some phone calls and schedule some appointments, so all is good, right?
Regardless, it was a full day. Did some weights at the Community Center, walked a mile or so, had a visit with my NP to discuss some foot pain, scheduled further appointments with an ortho NP, and then went on a bike ride along the Maumee with the Eldest and the Feral Third. Came home and the Eldest fixed a wonderful dinner, which 4/5 of us ate on the patio. The Feral Third and I played catch for awhile and then, after he came home from his internship stuff, the Middle and I took a walk. Now, the Feral Third is in bed, the Middle is doing homework, the Old Man is watching something boring on TV, and the Eldest and I are watching Anthony Bourdain. But enough of this self indulgent, twitter-esque blather no one really cares about.
Instead, a day or so ago I threatened to indulge myself in pondering about the whole concept of Breast Cancer Awareness. To loosely paraphrase myself, I said something to the effect that any teenager who had not been in a coma his or her whole life had to be aware of breast cancer. It's breast cancer, for god's sake, not Leiomyosarcoma. Did you have to look that one up? A few years ago, when my friend told me that she had breast cancer, I didn't have to look it up.
So, we are aware of breast cancer.
In fact, most women know we are supposed to do self breast exams. When we go for our annual gyn exams, we get a clinical breast exam. We know that there are recommendations for mammograms, whether we believe they will find anything or will actually cause cancer or not...we still all know that it is recommended we get them.
Everyone knows what the pink ribbon stands for.
Do you know what the black ribbon stands for? Look it up.
In the sense of knowing that breast cancer exists, that it is common among women, that it is eminently treatable. In fact, if you clicked on the last link I included, and read far enough, you will read those exact words.
And all of this is where the pink ribbon campaigns have been successful: lots of women get breast cancer, it can be screened for, it's treatable. The pink ribbons, the boobie bracelets, the second base stealing and the ta-ta loving campaigns., though, have also brought some false awarenesses (is "awarenesses" a word?).
We are all now aware that breast cancer is fun. Just look at the parties! Breast cancer is yummy! It's beautiful! It's sporty! It's cuddly! It's comfortable!
Well, you get the idea.
I did manage to make some phone calls and schedule some appointments, so all is good, right?
Regardless, it was a full day. Did some weights at the Community Center, walked a mile or so, had a visit with my NP to discuss some foot pain, scheduled further appointments with an ortho NP, and then went on a bike ride along the Maumee with the Eldest and the Feral Third. Came home and the Eldest fixed a wonderful dinner, which 4/5 of us ate on the patio. The Feral Third and I played catch for awhile and then, after he came home from his internship stuff, the Middle and I took a walk. Now, the Feral Third is in bed, the Middle is doing homework, the Old Man is watching something boring on TV, and the Eldest and I are watching Anthony Bourdain. But enough of this self indulgent, twitter-esque blather no one really cares about.
Instead, a day or so ago I threatened to indulge myself in pondering about the whole concept of Breast Cancer Awareness. To loosely paraphrase myself, I said something to the effect that any teenager who had not been in a coma his or her whole life had to be aware of breast cancer. It's breast cancer, for god's sake, not Leiomyosarcoma. Did you have to look that one up? A few years ago, when my friend told me that she had breast cancer, I didn't have to look it up.
So, we are aware of breast cancer.
In fact, most women know we are supposed to do self breast exams. When we go for our annual gyn exams, we get a clinical breast exam. We know that there are recommendations for mammograms, whether we believe they will find anything or will actually cause cancer or not...we still all know that it is recommended we get them. Everyone knows what the pink ribbon stands for.
Do you know what the black ribbon stands for? Look it up.
In the sense of knowing that breast cancer exists, that it is common among women, that it is eminently treatable. In fact, if you clicked on the last link I included, and read far enough, you will read those exact words.
And all of this is where the pink ribbon campaigns have been successful: lots of women get breast cancer, it can be screened for, it's treatable. The pink ribbons, the boobie bracelets, the second base stealing and the ta-ta loving campaigns., though, have also brought some false awarenesses (is "awarenesses" a word?).
We are all now aware that breast cancer is fun. Just look at the parties! Breast cancer is yummy! It's beautiful! It's sporty! It's cuddly! It's comfortable!
Well, you get the idea.
Saturday, May 7, 2011
Judge Mary McLaughlin may know law, but ...
...she doesn't understand reality.
Apparently, last December a couple of girls wore bracelets to school that said "I (heart) boobies." The bracelets come from the Keep Abreast Foundation. The girls were suspended. Their families filed lawsuits. And this month, Judge Mary McLaughlin ruled, "The bracelets ... can reasonably be viewed as speech designed to raise awareness of breast cancer and to reduce stigma associated with openly discussing breast health."
I don't want to get into the psychology of the teen mind here, but I'm quite sure that teens are capable of talking about "breast health" without resorting to words like "boobies." This is not the 1950s or 1970s or even the 1980s when songs such as Prince's "Let's Pretend We're Married" raised eyebrows. I'm pretty sure today's youth can say the word "breast." Yep. I pretty much guarantee it. Here, let me ask a few. Just did it. Yep. It can be done.
See, women die from breast cancer. Not ta-ta cancer. Not second base cancer. Not boobie cancer.
I didn't tell my husband one evening, "Hey, I went for my annual exam today. I got yanked and cranked. Oh, and my ta-ta has a lump in it."
I didn't pop two xanax and sit around the fire pit with my boys and tell them that I had boobie cancer.
I didn't call my best friend and say, "Yo, beotch, looks like cancer is stealing second..."
No, I said "I have breast cancer."
We certainly lose breasts to cancer, but we lose so much more. We lose health. We lose longevity. We lose energy. We lose our lives.
About 260,000 women were diagnosed with breast cancer in 2010, according to the American Cancer Society statistics. The National Institute of Health says that about 40,000 women and 400 men will die each year from breast cancer. That's more than the population of my city. Imagine the uproar if an entire small college town was decimated each year. Obliterated. No one would be selling sexy tank tops with hand imprints over the breast area to "raise awareness."
So, Judge Mary McLaughlin, I will not argue that the girls in question should be permitted to wear bracelets with the word "boobies" on them. No question asked about that. In the USA, that right is guaranteed. Personally, if girls want to dye their hair chartreuse and wear bikinis to school, so be it. I'll go to bat for them to have the right to do so. However, Judge McLaughlin, you are wrong when you say the bracelets themselves "raise awareness of breast cancer" and "reduce the stigma of discussing breast health."
For starters, unless a young person has been in a coma his or her entire life, by high school age (if not most probably before), he or she is "aware" of breast cancer. (I'll save the whole discussion asking what awareness even means for a future entry.) Come on, Judge. One in eight women in the USA (although I've also seen in places that it's now 1 in 7), or just slightly over 12% of the female population will develop breast cancer at some point in their lives. After all, breast cancer is the most common cancer in women in the USA, according to medicinenet. There's an entire pink month devoted to breast cancer. There are pink ribbon barbies. People are aware of breast cancer.
Furthermore, kids these days certainly don't need to use words like "boobies" if we want them to take breast health seriously. Parents don't encourage teens to take necessary medicines by pretending the spoon is an airplane. Doctors don't look in teens' ears and pretend to find hidden toys during exams. And teens don't need to be encouraged to "feel [their] boobies" or "save the ta-tas" or to discuss "boobie health."
We don't say "willie" and "ya-ya" when we discuss reproductive health. We say "penis" and "vagina." We talk about "greater than" and "less than" signs not "Mr. Alligator chomping" with young adults.
We say "obtuse and acute triangles" instead of "fat and ice cream cone triangles."
I think we can say breast.
So, Judge Mary McLaughlin, stick to First Amendment rights and stop trivializing us all. Reality is a bitch, but it's also so much more than boobies and bracelets.
Apparently, last December a couple of girls wore bracelets to school that said "I (heart) boobies." The bracelets come from the Keep Abreast Foundation. The girls were suspended. Their families filed lawsuits. And this month, Judge Mary McLaughlin ruled, "The bracelets ... can reasonably be viewed as speech designed to raise awareness of breast cancer and to reduce stigma associated with openly discussing breast health."
I don't want to get into the psychology of the teen mind here, but I'm quite sure that teens are capable of talking about "breast health" without resorting to words like "boobies." This is not the 1950s or 1970s or even the 1980s when songs such as Prince's "Let's Pretend We're Married" raised eyebrows. I'm pretty sure today's youth can say the word "breast." Yep. I pretty much guarantee it. Here, let me ask a few. Just did it. Yep. It can be done.
See, women die from breast cancer. Not ta-ta cancer. Not second base cancer. Not boobie cancer.
I didn't tell my husband one evening, "Hey, I went for my annual exam today. I got yanked and cranked. Oh, and my ta-ta has a lump in it."
I didn't pop two xanax and sit around the fire pit with my boys and tell them that I had boobie cancer.
I didn't call my best friend and say, "Yo, beotch, looks like cancer is stealing second..."
No, I said "I have breast cancer."
We certainly lose breasts to cancer, but we lose so much more. We lose health. We lose longevity. We lose energy. We lose our lives.
About 260,000 women were diagnosed with breast cancer in 2010, according to the American Cancer Society statistics. The National Institute of Health says that about 40,000 women and 400 men will die each year from breast cancer. That's more than the population of my city. Imagine the uproar if an entire small college town was decimated each year. Obliterated. No one would be selling sexy tank tops with hand imprints over the breast area to "raise awareness."
So, Judge Mary McLaughlin, I will not argue that the girls in question should be permitted to wear bracelets with the word "boobies" on them. No question asked about that. In the USA, that right is guaranteed. Personally, if girls want to dye their hair chartreuse and wear bikinis to school, so be it. I'll go to bat for them to have the right to do so. However, Judge McLaughlin, you are wrong when you say the bracelets themselves "raise awareness of breast cancer" and "reduce the stigma of discussing breast health."
For starters, unless a young person has been in a coma his or her entire life, by high school age (if not most probably before), he or she is "aware" of breast cancer. (I'll save the whole discussion asking what awareness even means for a future entry.) Come on, Judge. One in eight women in the USA (although I've also seen in places that it's now 1 in 7), or just slightly over 12% of the female population will develop breast cancer at some point in their lives. After all, breast cancer is the most common cancer in women in the USA, according to medicinenet. There's an entire pink month devoted to breast cancer. There are pink ribbon barbies. People are aware of breast cancer.
Furthermore, kids these days certainly don't need to use words like "boobies" if we want them to take breast health seriously. Parents don't encourage teens to take necessary medicines by pretending the spoon is an airplane. Doctors don't look in teens' ears and pretend to find hidden toys during exams. And teens don't need to be encouraged to "feel [their] boobies" or "save the ta-tas" or to discuss "boobie health."
We don't say "willie" and "ya-ya" when we discuss reproductive health. We say "penis" and "vagina." We talk about "greater than" and "less than" signs not "Mr. Alligator chomping" with young adults.
We say "obtuse and acute triangles" instead of "fat and ice cream cone triangles."
I think we can say breast.
So, Judge Mary McLaughlin, stick to First Amendment rights and stop trivializing us all. Reality is a bitch, but it's also so much more than boobies and bracelets.
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