My blogging mama friend, Katie Granju, is coming up on the first anniversary of the death of her son, Henry. Thus far, the authorities have not given the circumstances surrounding his death a full and complete investigation.
Please, in honor of all those struggling with addictions, for all the mamas, for the safety of all of our children, please sign the following petition.
http://www.change.org/petitions/justice-for-henry-granju?utm_medium=facebook&utm_source=share_petition&utm_term=own_wall
Hey, it's my birthday weekend, so do it because I've asked, OK?
I've written more about Henry's case. You can click on "Henry" in my tags to follow more of his story.
Love to all,
Dawn
Sunday, May 29, 2011
Tuesday, May 24, 2011
Pink Abyss
There's nothing wrong with the color pink. It's not, though, typically thought of as a "power color." No law student interviewing for an internship with a judge is going to show up wearing a pink suit, for instance.
As Marshall McLuhan said, "The medium is the message." This is seen nowhere more clearly than in the pink-itude of breast cancer. In previous entries, I've written about the realities of breast cancer, and they really aren't all that warm, welcoming, innocent and harmonious. Yet the medium of pink (ribbons) has become the message of breast cancer awareness. It is also becoming controversial as bloggers and organizations take on the pink ribbon campaign.
I've never liked pink. My mother loved pink. I think it was her second favorite color next to baby blue. She was a very pastel oriented person. Unfortunately for her, her daughter turned out to be very much the tom-boy and very much did not like pink no matter how often I was told I look good in it.
Needless to say, being diagnosed with breast cancer has not helped foster my appreciation for pink. Early in my treatment, a friend who is also an endurer offered me a golf visor with a pink ribbon on it, saying I could have it if I wanted but that she didn't "need to be reminded of breast cancer. Fake boobs do that for me." Very true. As an endurer myself, the limited range of motion in my left arm is a constant reminder of my cancer. The cognition deficits I struggle with are a daily reminder. The damage to my children's psyches reminds me that we are all altered, and not for the better, by cancer.
Yet I find myself inexplicably drawn to pink ribbon paraphernalia. Oh, I don't mean the cute pink teddy bears or pink ribbon key chains. I most certainly won't be getting a pink ribbon tattoo. Daily, though, when one particular group post comes through my Facebook feed, I find myself clicking on items to buy that are decorated with pink ribbons. Pink ribbon running shoes, fleece jackets, and water bottles draw my attention.
I never buy them. I'd be uncomfortable wearing them. I do, though, understand why others buy them.
At one point when I was in treatment, my infusion cycle matched that of another endurer. I mentally referred to her as "the pink ribbon lady." I've since run into her at other breast cancer oriented events. We chatted as we sat, tethered to our poisons, for long periods of time. From what I can infer, she's a mother of grown children, a grandmother, and also has metastatic her2/neu breast cancer. She was there getting the herceptin infusions that are keeping her cancer from progressing. As much as I could tell, she is "healthy" and living a very active life, which is awesome and gives me hope.
I refer to her as the "pink ribbon lady" because on one particular day every single item of clothing that I could see had at least one pink ribbon on it. Her hat, her shirt, her sweat pants, her socks, her tennis shoes, her jacket, and her earrings all had (albeit tasteful) pink ribbons somewhere. She was also talking about having attended a "pink ribbon" event the previous evening and plans for attending another the following week.
Now, maybe her clothing was part of her infusion armor. I wore my "Hey Cancer, you picked the wrong bitch!" t-shirt on infusion days. I also wore my Pac Man t-shirts to infusions. I carried Pac Man band aides to be applied over my port after my infusions. I even mediated to Pac Man music during infusions. I'm all about infusion mojo.
I won't, though, wear pink ribbons. For starters, they are pink. I've made it clear I don't like pink. However, every time I look at some pink ribbon festooned item, I also think "I'd never wear that." I don't want to be known as the Breast Cancer Lady. Trust me, I don't hide my diagnosis. I also wear a lymphedema sleeve quite frequently. I probably talk too much and in inappropriate situations about cancer and treatment. On the other hand, I'm creeped out by the idea of wearing breast cancer ribbons on my attire. During treatment, I had a pink boxing glove key chain that I attached to my bag and a real pair of pink boxing gloves on my power alter, but those are gone now. I don't feel drawn to them.
Still, I find something attractive by the pink culture. Although I struggle with the Komen organization and pinkwashing of product marketing, I also can't say I won't participate in the Race for the Cure this year. I found participating in the Race last year exhilarating. (I promise here that I won't hit anyone up for donations, though, and I won't be organizing a team again.) There's something exhilarating about being surrounded by others who have shared experiences, fears, and hopes. I also don't mind the support funding offered by Komen. I fully enjoyed my exercise classes for women with breast cancer, funded by a Komen grant. Best classes ever! I don't, though, anticipate using the Komen bottle koozie or change purse that I was given.
There is something about the message of hope and progress and belonging that supersedes the other messages in the pinkness of the ribbon medium.
I look at pictures of my friend and her pink ribbon dragon boating paddle, a friend who is many years out from treatment and doing well, and I think if she can do it, I can do it. I relied heavily on messages of strength and hope during treatment.
I'm planning on buying a new kayak next week. I doubt it will be pink. If I could find a pink kayak paddle, I'd be all over that. I'd certainly add a pink ribbon decal to the bow of my kayak. I'd wear a pink whitewater helmet or life vest. I'd wear pink ribbon lifting gloves with pride. I'd probably wear a tech shirt that says, "These boobs don't jiggle. Running for my life" or "Cancer sucks. Running for my life." I already have one that says, "Chemo is easy; chemo is hard." I'd use pink kettlebells. I'd wear a pink biking jersey.
A pink paddle, I think, sends a much more empowering message than a pink teddy bear.
Pink is here to stay. The pink ribbons and teddy bears aren't going away. I just want women to also find strength in pink, to see pink ribbon hand weights and heavy bags, not just yoga mats and water bottles. Instead of racing for a cure, racing in spite of no current cure.
Maybe I'll be out on the river some day and some woman whose breasts have been chopped off, who can't raise her arms more than 30 degrees from her side, who that morning had to ask someone to tie her shoes for her and pour her a cup of coffee will see my pink ribbon kayak paddle and draw some strength and determination to keep putting one foot in front of the other.
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.
Relay for Life 2011
So, if anyone would like to donate to me or donate to my team or if anyone local would like to join our team, please feel free do do so. Due to a technical glitch, I can't access my personal page, but you can donate or join by going here. My name is Dawn Hubbell-Staeble (you will find me on the team twice and it doesn't matter which one) and the name of our team is the Pac Maniacs, in reference to my visualization of Pac Man during chemo and radiation.
If you are local and want to stop by, the event is this coming weekend. Friday evening May 20 to noon Saturday the 21. Our team will be selling muffins Saturday morning for breakfast. My son The Middle will be dressed as Ms. Pacman for the (otherwise offensive in my opinion) Ms. Relay event Friday evening, so if you are around, be sure to drop some change in his bucket.
Here's hoping for good weather and fun!
Thanks!
Tykerb, week 1
Welp, one week of Tykerb is down. Fifty-one more to go.
So far, it's been OK. I could tell you exactly how many episodes of diarrhea I've had, but that would be TMI, for certain. It's not that bad, though, because it's not accompanied by the "traditional" discomforts of cramping and other intestinal discomfort. All in all, it's been pretty ::meh:: in that regard. Of course, I haven't had to work or anything like that this week. The nausea, though, is increasing. One night I took compazine for it. Guilty pleasure, here. I rather like the spacey way compazine makes me feel; however, I just really don't like having to take stuff, so I haven't taken any more. I do feel queasy, though, much of each day, mostly in the afternoons and evenings. According to the nurse I spoke with the other day, one of three things will happen: this will all go away over the next few weeks after building to some sort of peak first, or I'll have low grade continuous symptoms the entire time I take they Tykerb, or I will have intermittant symptoms.
She gets paid for telling me "well, who knows?" in other words.
I've also noticed some fatigue and some increased mental fuzziness. WTF is up with the fuzziness?
On the postive front, the pain I was having in my one heel and the ball of the opposite foot (which I will admit to having been ready to hear was bone mets) has been mostly cured by the wonderful NP, Julie, at NorthWest Ohio Orthopedics. If you are in this area, I highly recommend their services. Best of all, it's not bone mets.
So far, it's been OK. I could tell you exactly how many episodes of diarrhea I've had, but that would be TMI, for certain. It's not that bad, though, because it's not accompanied by the "traditional" discomforts of cramping and other intestinal discomfort. All in all, it's been pretty ::meh:: in that regard. Of course, I haven't had to work or anything like that this week. The nausea, though, is increasing. One night I took compazine for it. Guilty pleasure, here. I rather like the spacey way compazine makes me feel; however, I just really don't like having to take stuff, so I haven't taken any more. I do feel queasy, though, much of each day, mostly in the afternoons and evenings. According to the nurse I spoke with the other day, one of three things will happen: this will all go away over the next few weeks after building to some sort of peak first, or I'll have low grade continuous symptoms the entire time I take they Tykerb, or I will have intermittant symptoms.
She gets paid for telling me "well, who knows?" in other words.
I've also noticed some fatigue and some increased mental fuzziness. WTF is up with the fuzziness?
On the postive front, the pain I was having in my one heel and the ball of the opposite foot (which I will admit to having been ready to hear was bone mets) has been mostly cured by the wonderful NP, Julie, at NorthWest Ohio Orthopedics. If you are in this area, I highly recommend their services. Best of all, it's not bone mets.
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.
This had better be worth it
 |
| $3,000, give or take, of pills. |
I told the younger two boys over dinner tonight. The Middle was already aware, being pretty active on Facebook and having been following along. The Feral Third was shocked and expressed quite a bit of dismay, but was pretty quickly soothed when I explained it was pills and not infusions and I wouldn't be bald or as sick as I was before. Yet it's after midnight and he's still awake, so who really knows what's going on in his head. He's feral after all. Supposedly, he's been asleep but just woke up realizing he had neither his pillow nor his blanket, whatever that means. The child has more pillows than the rest of the family combined, and I'm pretty sure that he has a blanket or two plus a comforter in his room and isn't reliant upon the little fleece blanket he just took upstairs with him. My speculation is that he's been awake, probably on his laptop or playing with his ipod. There's a reason I refer to him as the Feral Third.
 |
| My nightly dose. Looks benign enough. |
It seems like there should be some fan fare or something. Maybe it will become old hat at some point. One part of chemo that was kind of fun the first time around was waiting to see what sorts of side effects I would have. Well, fun in a sort of intriguing way, not amusement park way. There was some appeal to the concreteness of what I'd only read about, the dirty pocket change taste, the first tingles and pains of neuropathy, the crushing bone pain. For the heavy duty chemo, though, no one escapes unscathed. Everyone loses their hair, for instance. Everyone experiences fatigue and nausea to one degree or another. Not everyone experiences everything, but enough people do that I had the feeling that I wasn't going to get by unscathed. With Tykerb, however, some side effects vary widely. I'm taking it without the partner chemos, which are harsher. So, will I or won't I get side effects? Which ones? How many? When? Tonight? Tomorrow? Two weeks from now?
Let's just assume I won't get any.
I think I'll take an ambien, though, anyway so as to not dwell on this any more than I have to when I go to bed.
P.S. So as to not fritter away my summer, I shall get up in the morning, hop on my bike, head to the Community Center to work out, and then I have an appointment with my G.P. to discuss this issue with my heel, a pain like tennis elbow in my "bad" arm, and a few other niggling things. If I announce here that I am going to work out in the morning, I'm more likely to do it. Feel free to hold me accountable.
Sunday, May 8, 2011
Mother's Day, 2011
I love my boys. We are not a touchy-feely, sentimental bunch. Not by a long shot.
OK, I'll admit that I have visions of sugar plums...erm...ideal days. They rarely come to fruition. It is what it is.
This morning started off with my 15 year old, awake silly early for some reason--maybe one of his friends was stopping by to pick something up? I was asleep so I don't really know why he was up. He just was. However, being 15, he wasn't happy being awake, let alone being out of bed, and he ended up jumping into bed with me instead of making the journey alllll the way up the stairs to his own bed. One of the joys of having my bedroom on the first floor (one of the ONLY reasons, I'm thinking these days). I'm not using the word "jumping" here metaphorically. He JUMPED onto my bed, spouting "Happy Mother's Day!" My guess is about an hour later he decided that the sun was sufficiently high in the sky and his brothers both being asleep meant that he could control the Xbox, so he wandered off, leaving me with a kiss and the thought that, truely, that could have been our last ever long snuggle together.
At some point, we all got up, showered, dressed and headed off for lunch with the mother-in-law, which was nice as usual.
On the way home, we saw a turtle in the road. We turn around to go back and move it safely out of the way of traffic. However, this being a semi-busy rural road without much turning room. In the minutes it took us to find a place to turn around, wait for the oncoming traffic, and shudder because we were sure each car would squish the turtle, then turn back around because there was no room to pull off on the side of the road, wait for more traffic, the very lucky turtle had made it safely across the road and was into a field. By this point, my adhd rife family was bored, me included, so we just went on our merry way (at one point, when I identified as a homeschooling mom, I'd have pushed through my own personal boredom and turned this into a forced learning experience....now, not so much).
The Feral Third thought we should all go to a movie, so the boyz treated me to a movie. I"ll admit, I love super hero movies. No real surprise. The older two were well versed in mythology before they even started reading; I sort of did my own sort of Waldorfy education for a while with them, only instead of fairies and gnomes, we immersed ourselves in heros, mythology, and comics. It only seemed fitting we'd go see Thor for Mother's Day. The Eldest paid for the tickets with his hard earned money. The Middle kept the peace. We rode our bikes. It was a good time. Too bad the movie was mediocre. We did have a good time discussing the mythology, especially the use of Loki, and reminiscing about the time we had spent years ago reading Norse mythology. I agree with the Eldest who thought we were over analyzing the movie (it doesn't deserve the term "film"). We also, as a family, don't appreciate the 3-D effects and find that they tire our eyes. The Middle wishes 3-D was used to make the film better, instead of being used to cover up weak films. Still, it was a super hero movie, and we had a good time.
Chinese buffet for dinner. Don't ask. It always smells good, sounds like a good idea, and we always, always always regret it later.
And thus ends a fairly calm, normal day. We were all together, which rarely happens any more.
I love my boys.
OK, I'll admit that I have visions of sugar plums...erm...ideal days. They rarely come to fruition. It is what it is.
This morning started off with my 15 year old, awake silly early for some reason--maybe one of his friends was stopping by to pick something up? I was asleep so I don't really know why he was up. He just was. However, being 15, he wasn't happy being awake, let alone being out of bed, and he ended up jumping into bed with me instead of making the journey alllll the way up the stairs to his own bed. One of the joys of having my bedroom on the first floor (one of the ONLY reasons, I'm thinking these days). I'm not using the word "jumping" here metaphorically. He JUMPED onto my bed, spouting "Happy Mother's Day!" My guess is about an hour later he decided that the sun was sufficiently high in the sky and his brothers both being asleep meant that he could control the Xbox, so he wandered off, leaving me with a kiss and the thought that, truely, that could have been our last ever long snuggle together.
At some point, we all got up, showered, dressed and headed off for lunch with the mother-in-law, which was nice as usual.
On the way home, we saw a turtle in the road. We turn around to go back and move it safely out of the way of traffic. However, this being a semi-busy rural road without much turning room. In the minutes it took us to find a place to turn around, wait for the oncoming traffic, and shudder because we were sure each car would squish the turtle, then turn back around because there was no room to pull off on the side of the road, wait for more traffic, the very lucky turtle had made it safely across the road and was into a field. By this point, my adhd rife family was bored, me included, so we just went on our merry way (at one point, when I identified as a homeschooling mom, I'd have pushed through my own personal boredom and turned this into a forced learning experience....now, not so much).
The Feral Third thought we should all go to a movie, so the boyz treated me to a movie. I"ll admit, I love super hero movies. No real surprise. The older two were well versed in mythology before they even started reading; I sort of did my own sort of Waldorfy education for a while with them, only instead of fairies and gnomes, we immersed ourselves in heros, mythology, and comics. It only seemed fitting we'd go see Thor for Mother's Day. The Eldest paid for the tickets with his hard earned money. The Middle kept the peace. We rode our bikes. It was a good time. Too bad the movie was mediocre. We did have a good time discussing the mythology, especially the use of Loki, and reminiscing about the time we had spent years ago reading Norse mythology. I agree with the Eldest who thought we were over analyzing the movie (it doesn't deserve the term "film"). We also, as a family, don't appreciate the 3-D effects and find that they tire our eyes. The Middle wishes 3-D was used to make the film better, instead of being used to cover up weak films. Still, it was a super hero movie, and we had a good time.
Chinese buffet for dinner. Don't ask. It always smells good, sounds like a good idea, and we always, always always regret it later.
And thus ends a fairly calm, normal day. We were all together, which rarely happens any more.
I love my boys.
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.
Thought for the Day: 5/7/11
Anger is just a demand for change, a passionate wish for things to be different.
Rachel Naomi Remen
Anger is a great force. If you control it, it can be transmuted into a power which can move the whole world.
Sri Swami Sivananda
Let us not look back in anger or forward in fear, but around in awareness.
James Thurber
Do not go gentle into that good nightRage, rage against the dying of the light
Dylan Thomas
Rachel Naomi Remen
Anger is a great force. If you control it, it can be transmuted into a power which can move the whole world.
Sri Swami Sivananda
Let us not look back in anger or forward in fear, but around in awareness.
James Thurber
Do not go gentle into that good nightRage, rage against the dying of the light
Dylan Thomas
Big Decisions
I've been kicking around a lot of ideas lately, many concerning my blog, many concerning where I go now regarding life, treatment, the future. I've composed numerous entries in my head; however, inertia and the end of the semester have really done a job on getting anything posted here.
To start things off, for those of you not following along on Facebook, I'm doing much better psychologically. Mostly. I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days. Not something I want to experience again. The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific. Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter. I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running. When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants. So if you see me wearing the same clothes over and over this season, just ignore it.
Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week. When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not. The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy. My onco nurse doesn't refer to it as such. The drug itself is Tykerb. And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of). Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year. Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses. Herceptin is a large molecule. Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one. Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't. Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease. Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.
This has been a difficult decision. Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day. I'll be taking 4.) . Tykerb is expensive, and as I said earlier, I am taking it off-label. Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago. I've seen it quoted at anywhere from $3K-$6K/month. Assuming that I'd be denied, it was easy for me to agree to try. Really, I had not decision to make. My insurance would make it for me. Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month. At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform. And, although I was concerned over my longevity in the face of not taking it, yet it was good. The decision, ultimately, was out of my hands. And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.
Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call. Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month? It was surreal. I paid by credit card, and she told me that the Tykerb would be delivered in two days.
So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.
Side effects. Do I have to? Really? For starters, it can cause fatal liver failure. Sure it can. Like all chemo, it's toxic (by definition, really). It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf). It can also cause lung problems (and to be honest, I've just been to freaked to find out about those). All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk. Yet...
hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace). On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking. So, I'm hopeful. I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).
Tomorrow, then, I'm off to the lab for my blood work in the morning. Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way. I've committed to the summer. All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself. I'll reassess in August and decide if I'm going to stick it out through fall semester. I'll reassess in December if I'm going to finish out the year of treatment.
At least my hair won't fall out.
My second decision lately is that I need to do something about this blog. What, though, I'm not sure. Look for changes in the future.
To start things off, for those of you not following along on Facebook, I'm doing much better psychologically. Mostly. I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days. Not something I want to experience again. The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific. Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter. I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running. When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants. So if you see me wearing the same clothes over and over this season, just ignore it.
Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week. When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not. The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy. My onco nurse doesn't refer to it as such. The drug itself is Tykerb. And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of). Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year. Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses. Herceptin is a large molecule. Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one. Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't. Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease. Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.
This has been a difficult decision. Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day. I'll be taking 4.) . Tykerb is expensive, and as I said earlier, I am taking it off-label. Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago. I've seen it quoted at anywhere from $3K-$6K/month. Assuming that I'd be denied, it was easy for me to agree to try. Really, I had not decision to make. My insurance would make it for me. Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month. At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform. And, although I was concerned over my longevity in the face of not taking it, yet it was good. The decision, ultimately, was out of my hands. And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.
Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call. Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month? It was surreal. I paid by credit card, and she told me that the Tykerb would be delivered in two days.
So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.
Side effects. Do I have to? Really? For starters, it can cause fatal liver failure. Sure it can. Like all chemo, it's toxic (by definition, really). It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf). It can also cause lung problems (and to be honest, I've just been to freaked to find out about those). All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk. Yet...
hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace). On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking. So, I'm hopeful. I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).
Tomorrow, then, I'm off to the lab for my blood work in the morning. Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way. I've committed to the summer. All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself. I'll reassess in August and decide if I'm going to stick it out through fall semester. I'll reassess in December if I'm going to finish out the year of treatment.
At least my hair won't fall out.
My second decision lately is that I need to do something about this blog. What, though, I'm not sure. Look for changes in the future.
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