There's been a lot of chatter in blogs lately about Komen, pink branding, and, most damning, that very little of the KOMEN money...all those races and walks and bracelets and ribbons...actually goes toward researching a cure for cancer. There's also talk that Komen is in bed with big pharma, which admittedly, has its own set of issues. I deny none of this. In fact, while I will be running in the local Race for the Cure this fall, I won't be putting together a team, nor will I be asking for donations.
So, you might be asking, why the heck is she even telling us all of this. She sounds rather wishy-washy. If she's against Komen, why is she even participating?
I want to clarify: I am NOT against Komen as an organization at all. I'm against the duplicitous nature of the "for a CURE" mumbo jumbo. If an organization raises millions of dollars "for a cure," I expect that, quite frankly, a lot of their money should go toward a cure. Instead, approximately 25% goes toward research. When it comes to research dollars, only about 3% go toward research on metastatic breast cancer which is what actually kills the absolute vast majority of people diagnosed with breast cancer. Komen's mission is to end breast cancer. Yet, almost as much Komen money is spent on fund raising, office expenses, etc. as goes toward research.
But I'm letting all that roll off my back right now, because one thing Komen does, and does superbly, is support those with breast cancer, and for that, I'll run. I have directly benefited by Komen funding in one way, especially, that might potentially prevent me from having an reccurence. One way that has been life changing.
Exercise.
A year ago, I attended, a yoga retreat for breast cancer survivors that was funded by Komen and private donations and Duke Cancer Center. It was an amazing experience, one I shall be forever grateful for.
However, much more life changing was my participation in a Komen grant sponsored exercise program here in town. C.U.R.E. (A Community United Through Relationships and Exercise) was one of the best experiences of my life (some might think that my life has been boring). Granted, we were a small community, but what we learned about exercise, alone, made the experience worthwhile.
I am much, much stronger than I was before beginning the classes. I also had the opportunity to try different forms of exercise, for instance spin (and I decided that I really do NOT like it) and aqua fit (water aerobics, two thumbs up). Zumba, which I really did not think I would like, turned out to be one of my most favorite exercise options, and I now attend at least two zumba classes a week, have purchased a zumba game for our xbox kinect! I'm in the market for the best option for zumba shoes.
I also developed relationships with other bc survivors I may not have otherwise developed. For instance, one participant was a woman I'd known in passing for several years, yet I didn't know she had had bc and she didn't know I had. On the surface, we are two vastly different women, but we easily found commonalities in the CURE classes.
The teachers were very awesome as well. As trained exercise specialists, and young very fit women themselves, I would have previously been disinclined to chat them up; however, that was so not the case with these CURE instructors. The one I exercised with the most frequently even went so far as to come up with a specialized exercise routine for me and one other participant as we were a little stronger and more able than some of the others. Regardless, we all had fun, we all tried out new activities, and best of all, I learned to enjoy sweating to the point that my entire head was wet. Who knew?
So, for this, and this reason alone, I'm not convinced that Komen is worth totally ditching. I have certainly benefited from Komen's generosity in funding these programs.
Oh, and now I've "graduated" to the regular classes at the Rec Center and can hold my own with students who are the age of my own children. Some times, I even show them up :)
Tuesday, July 12, 2011
Thursday, July 7, 2011
Beautiful Day in the Neighborhood
Wow. It has certainly been a long time since I've written anything. It's not that I don't think about blog posts. I have many good intentions; I have many ideas for posts and notes jotted down; however, I have moved my laptop from the couch to the table. This is both good and bad. It's good in that I'm less likely to get sucked into watching tv and hanging out online. It's bad in that I don't hang out watching tv and hanging out online. This change in location also means that I'm more apt to do "drive by updates" on facebook, but less likely to sit down long enough to compose something thoughtful. I've read enough blogs to realize that the self-indulgent, thoughtless blogger is worse than no blogger. Hence, my silence.
However, today was such a nice day that I'm compelled to share it with you. Actually, the day had nothing to do with me. It was a beautiful day for my youngest son, aka The Feral Third.
TFT has had a rough month or so. You see, his soccer team merged with a team from another club and there will now be enough kids to have two teams. Sadly, TFT did not make the A team. Even sadder, all of his buddies did make the A team. This has been very upsetting and devastating for him as you might imagine. No matter what spin we put on it, he knows that he is going to be playing weaker teams, in a weaker division, not going to tournaments, and will not have the prestigious coach. He also believes this marks the beginning of the end of his soccer career and he foresees playing JV in high school while his buddies all play varsity. Yes, we adults know he's waaaaay over analyzing this all, but reality is that he is over analyzing this and this is his life right now. He totally feels slighted, insulted, and demeaned.
Yes, we've all been there, done that and lived to tell the tale. He just has a lot of emotional energy to put into this tale these days (weeks? this has dragged on and on).
Anyway, to make what has been a miserable month shorter for the sake of the rest of you (no one else should have to live my misery and believe me, I've shared it enough already with others), he has felt overlooked by his friends who, being on the A team, do some sort of running club or something. He was invited once and didn't go because we got off to a slow start (no pun intended) that morning, but he clearly feels that if he were wanted there, he'd have been in on it from the beginning and then he found out that they also play soccer afterward and, again, he wasn't "in on it". He was an after thought.
Again, play me a violin....
So, that sets the stage. Probably 99% of all of this angst is in his imagination, but he's been bringing that imagination to life in our family's daily life for a month now.
Last night, though, things began to look up. Two of his mates spent the night and they never once talked about soccer. Thank the stars.
It was a total flash back to 2005 or so, when my eldest (hmmm....do I have a blog name for him? I might, but thanks to chemo brain, I can't remember) and his mates would get together. It was a mini-me of the current teenagers hanging out here at the same time.
On top of the emotional wanking that has been going on, we've also had lots of late nights and slow mornings for the past month. I was out of town for about 10 days, and my husband is an early to bed kind of guy, which meant that the kids were very, very late to bed. Those of you who still have enough control over your children to have bedtime, might be shocked to hear that an 11 year old was regularly going to bed at 2 a.m. or later and sleeping until noon, but that is a pattern we've fallen into. Add in a visit from the cousins which makes for a week with looser rules than usual, and...chaos regarding sleep hygiene.
So last night, I agreed to these other two boys spending the night in part to keep the hormonal Feral Third happy but also because I saw it as an opportunity to enforce a bedtime without an argument. Who wants to act like a toddler and throw a tantrum in front of their friends? The deal was OK to the sleepover if they agreed to lights out and a movie turned low at midnight.
It worked. I removed all the video game controllers so that they weren't tempted to cheat, told them if they'd lay still, they'd be cooler, and they were out.
This also meant then were awake fairly early this morning. I was reading and came out of my room at 8:45 and found all three of them awake. Awake and looking like the older boys they so admire. I have since begun referring to them as The Third Wave.
Now, back in the day, in 2005 or so, my eldest and his buddies would have some wild Risk games. They'd combine games, boards, pieces, and rules and play for entire weekends. There have also been many Risk games played at our home by many, many young boys in this town. It is also a tradition to play Risk with the cousins when they come to visit each year. It was very heart warming to see The Third Wave getting it on with World Domination with such glee.
Of course, you can't have boys in the house (even if they are on the patio) without feeding them. I was flashing back to the days when I would regularly stock up on cheap frozen pizzas, frozen burritos, jarred spaghetti sauce, and other food items in mass quantities because I never knew when I'd be called upon to provide food for the hungry hoards.
It's been awhile.
So a trip to the grocery was called for. Hoping that this will not be the last time we have a hoard of hungry boys, I stocked up.
Then I got to do what I love doing the most. Providing food for people I love.
However, today was such a nice day that I'm compelled to share it with you. Actually, the day had nothing to do with me. It was a beautiful day for my youngest son, aka The Feral Third.
TFT has had a rough month or so. You see, his soccer team merged with a team from another club and there will now be enough kids to have two teams. Sadly, TFT did not make the A team. Even sadder, all of his buddies did make the A team. This has been very upsetting and devastating for him as you might imagine. No matter what spin we put on it, he knows that he is going to be playing weaker teams, in a weaker division, not going to tournaments, and will not have the prestigious coach. He also believes this marks the beginning of the end of his soccer career and he foresees playing JV in high school while his buddies all play varsity. Yes, we adults know he's waaaaay over analyzing this all, but reality is that he is over analyzing this and this is his life right now. He totally feels slighted, insulted, and demeaned.
Yes, we've all been there, done that and lived to tell the tale. He just has a lot of emotional energy to put into this tale these days (weeks? this has dragged on and on).
Anyway, to make what has been a miserable month shorter for the sake of the rest of you (no one else should have to live my misery and believe me, I've shared it enough already with others), he has felt overlooked by his friends who, being on the A team, do some sort of running club or something. He was invited once and didn't go because we got off to a slow start (no pun intended) that morning, but he clearly feels that if he were wanted there, he'd have been in on it from the beginning and then he found out that they also play soccer afterward and, again, he wasn't "in on it". He was an after thought.
Again, play me a violin....
So, that sets the stage. Probably 99% of all of this angst is in his imagination, but he's been bringing that imagination to life in our family's daily life for a month now.
Last night, though, things began to look up. Two of his mates spent the night and they never once talked about soccer. Thank the stars.
It was a total flash back to 2005 or so, when my eldest (hmmm....do I have a blog name for him? I might, but thanks to chemo brain, I can't remember) and his mates would get together. It was a mini-me of the current teenagers hanging out here at the same time.
On top of the emotional wanking that has been going on, we've also had lots of late nights and slow mornings for the past month. I was out of town for about 10 days, and my husband is an early to bed kind of guy, which meant that the kids were very, very late to bed. Those of you who still have enough control over your children to have bedtime, might be shocked to hear that an 11 year old was regularly going to bed at 2 a.m. or later and sleeping until noon, but that is a pattern we've fallen into. Add in a visit from the cousins which makes for a week with looser rules than usual, and...chaos regarding sleep hygiene.
So last night, I agreed to these other two boys spending the night in part to keep the hormonal Feral Third happy but also because I saw it as an opportunity to enforce a bedtime without an argument. Who wants to act like a toddler and throw a tantrum in front of their friends? The deal was OK to the sleepover if they agreed to lights out and a movie turned low at midnight.
It worked. I removed all the video game controllers so that they weren't tempted to cheat, told them if they'd lay still, they'd be cooler, and they were out.
 |
| The Third Wave |
 |
| Sorting Game Pieces |
Now, back in the day, in 2005 or so, my eldest and his buddies would have some wild Risk games. They'd combine games, boards, pieces, and rules and play for entire weekends. There have also been many Risk games played at our home by many, many young boys in this town. It is also a tradition to play Risk with the cousins when they come to visit each year. It was very heart warming to see The Third Wave getting it on with World Domination with such glee.
Of course, you can't have boys in the house (even if they are on the patio) without feeding them. I was flashing back to the days when I would regularly stock up on cheap frozen pizzas, frozen burritos, jarred spaghetti sauce, and other food items in mass quantities because I never knew when I'd be called upon to provide food for the hungry hoards.
It's been awhile.
Then I got to do what I love doing the most. Providing food for people I love.
And these people were very appreciative!
The day continued without a hitch. It included a walk to Walgreen's, a game of volley ball and one of badminton. They then went to one of the other boys' homes for dinner, returned here, were playing something that involved yelling and running in the dark, and at 10 p.m., more than 24 hours after it started, the "sleep over" ended.
No fuss, no muss (they did have to be persuaded to clean up the family room, but they did a good job), no arguments, and only one injury (and that was in the last 15 minutes).
I know my member of the Third Wave was asleep early and easily tonight, and I hope he is feeling better about his predicament or at least had 24 hours of not stewing over how unfair life can be at times.
Yes, it can be, son, but it is still a wild and wonderful place and you might as well ride it hard while you can.
And I'm glad there are Risk players back in the house.
Sunday, May 29, 2011
Justice for Henry Granju
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
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
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.
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