I never got around to mentioning it here, but I had my "annual" MRI (or rather the MRI which I guess is to become an annual thing....) and the results were "unremarkable." In this instance, it's good to be unremarkable.
I'm not sure the stress and expense of an annual MRI is called for, seeing as I have very little breast tissue (probably an "unremarkable" amount) and any recurrence is likely to show up distally, in my bones, liver, brain, lungs or all of the above. At that point, it becomes "incurable." Those types aren't diagnosed until there's some sort of symptoms. It's unlikely that I'd experience a recurrence while I'm taking Tykerb, but that doesn't mean that I don't think about it often.
Meanwhile, I'm happy to be "unremarkable."
Tuesday, November 1, 2011
Saturday, September 17, 2011
Positive Improvements
It really pays to have rock awesome doctors.
Let me backtrack a little here....
Earlier this summer, I had to have a regular check up with my surgeon. The checkup went fine, but that day had been a particularly bad, emotional, depressed day for me. I was totally out of sorts. Insanely so.
In the office, my blood pressure was sky high, higher than it has ever, ever been. Scary high. Crazy high. I never have problems with high blood pressure, so that was odd. I'd totally lost it on The Eldest on the drive up to the appointment over something totally stupid. I was weepy. It was crazy.
Near the end of my appointment on this particularly, spectacularly bad day, I was crying about how horribly I was functioning. How confused I always was. How fuzzy my brain was. How I could hardly read.
Dr. The Cutter immediately knew what I needed. I needed to go see her friend, a psychologist, who treats people with chemo brain. I really think she thought I was losing it, because--being the rock awesome doctor she is--she called him right there, left him a message when he didn't answer, and called to follow up with me a few times in the days following.
I've not had a day that bad since (maybe not before, either), and I tracked it down to an increase in my Ambien dosage. Therefore, I should never have that problem again, but it sure was scary.
Since I didn't feel so fragile once I stopped taking Ambien, I put off calling the chemo brain doctor as I was thinking of him. Yet, eventually, I did get around to it. And I am so happy that I did. It has changed my life more than I could have imagined, and I foresee more changes in the future.
For starters, when I finally did get around to calling him, he remembered who I was--and what Doctor the Cutter had said about my mental state on the day she last saw me. He immediately agreed to set up an appointment with me and deal directly with my insurance company because one reason I hadn't called sooner was the "deer in the headlights" position I find myself in whenever I have to do such things as call insurance company or sort out such details.
So, one day in July, I met the Magic Man of Maumee as I've come to think of him. We had a chat. I detailed all of my chemo brain problems and frustrations, how my life was falling apart.
It's hard to even put it into words....for starters, I was having incredibly hard times finding words, most notably nouns, even common every day words.
Here's an example: my sons' names. Sure, like everyone, I tend to call child A by child B's name. I've always done that. But for the last year or so, I can be staring right at a child and not be able to retrieve the name. I'd just stare blankly. There were other, more disturbing things. Like not being able to remember what I was doing while I was doing it. Not being able to follow along in meetings. Not being able to read a student essay without losing track of what I was doing. Forgetting in the middle of writing a comment on said student's essay what it was I was commenting upon. Being nearly totally incapable of basic math. Having a hard time reading fiction. A general lack of critical thinking and analytical ability. Much worse spelling, which has never been a strong suite for me, than normal.
And then there was my inability to remember what I needed to do, to carry through with what I should do, to complete what I started, to start. I'd find myself frozen with anxiety, unable to start things: housework, grading, planning, phone calls.
I was perseverating on certain topics, to the point that I was losing sleep.
I was depressed.
I could barely do my job. Teaching was hugely, hugely stressful for me. I'd lost my pizzazz. I could barely do what I needed to do. I was constantly forgetting basics. For instance, I had to set an alarm on my phone to remind myself to take attendance! I wouldn't get prep work done in a timely manner. I felt as if I weren't making sense when I'd talk to my students individually.
I couldn't grocery shop and then figure out what meals to prepare. Food regularly rotted in the fridge because I'd forget I'd made it in the case of left overs, or I'd forget to repackage and freeze it in the case of buying large quantities of chicken quarters several times, or I'd forget to prepare what I'd bought.
We have eaten so much pizza in the last year......gag.
I couldn't retell simple movies that I'd just seen. Heck, I could hardly watch a movie and follow along.
I'd get confused really easily. I couldn't remember strings of numbers, even saying them out loud.
In general, I felt really stupid and incapable and everything was so damn hard. So, so, so hard. My quality of life was certainly diminished.
So the Magic Man of Maumee and I talked. I explained. I described. I detailed. The Magic Man explained what science and research has shown about the brains of those who have such complaints after chemo. It's not everyone who has such changes, although women--especially--who are required to multi-task tend to find the changes most disturbing. Women in a certain age range tend to find them more obvious and to bounce back less quickly than other women. I tend to fall into all of the "risk" categories, including one of the biggest for significant negative change: having ADHD.
For years, I'd suspected that I had ADHD. I started wondering when my one son was diagnosed with pretty extreme ADHD. I then had a student who did a fairly extensive research essay about girls with ADHD, and, in doing her research, she got tested and was diagnosed, began treatment, and her life improved greatly.
Yet, I couldn't get my life together enough to do anything about my suspicions...which is very typical of a person with ADHD.
So, the Magic Man gave me some tests. I aced 'em. He had my husband and one other person who would rather go nameless fill out some questionnaires. I "aced" those, too. If there is such a thing as "off the charts" in the area of non-attentive ADHD, it would be me.
The Magic Man's assumption is that I've always had ADHD but to a lesser degree, and that I'd been more or less able to cope, until doing two protocols of chemo aged me by 20 years and shrank my frontal cortex (I think that's what he said).
Anyway, it all made sense when he was explaining it.
He then gave me a bunch of other tests to rule out anxiety and depression and mood disorders and other, more serious, problems. Indeed, they were ruled out for the most part. At least the biggie, mood disorder, was ruled out. Many people with ADHD also exhibit signs of anxiety and depression, as do cancer endurers....so there were some blips on those tests, but nothing too significant.
After meeting three or four times, the Magic Man made a recommendation for some medication, which I started taking in August, and I've continued to see him for talk work and ADHD coaching.
The change has been phenomenal. Life certainly isn't perfect, but I'm able to participate again. I'm still overwhelmed by things with a lot of details. But for the first time in a long time, I feel engaged in the world. I'm not just going through actions in a daze.
I'm as on top of things as I've ever been since having children, I think. For example, I graded four sets of essays in three days last week without even noticing that I was doing it. Reading and commenting on them was easy, and it wasn't at the last minute. I *see* the flow of pedagogy in my classes for the first time in two years. I can plan things and execute them. I can be engaged in meetings. I feel much more alert (and don't go thinking it's because I'm taking speed or something for the adhd, because I'm taking a non-stimulant med).
Best is that for the first time in my LIFE, I can see how to work with my limitations and make life work. A huge part of that is the "coaching" the Magic Man is doing with me, helping me to think differently about time, helping me to work with instead of against my neurology. In a lot of ways, life is becoming the "easy" way I always saw it for so many others.
And this all reminds me of the first day my one son took his first pill for his ADHD--and trust me, I was loathe to the core to "resort" to meds with him--and he came to me and said, "Does everyone see the world so clearly? Why didn't you give me that sooner?"
I can still tell that my brain isn't what it once was. I still struggle for words. Writing is hard. Organizing my thoughts is hard. I certainly don't have the IQ I once had. I've been with my students for 4 weeks now and I'm still struggling to recognize them all and remember their names, but I'm way, way better off than I was at this point last year.
I still struggle to read, but I'm not struggling with student essays. And I am able to finish novels now. I can follow movies better. I'm sleeping better. I'm not fixating on negative thoughts so much. I'm much better able to organize the family.
Meals and shopping are still a struggle, and I'll be working on that area in October. Meanwhile, I've to a flow to my days, a flow that is intentional. I don't feel so overwhelmed by getting out of bed in the morning. I've been able to add activities to my schedule.
All in all, it's been a good thing, and the Magic Man thinks that at some point, I'll be able to stop taking the med. We'll discuss that in 12 months. I think I'll also be doing some brain training to try to get back some of the intelligence that I've lost.
Two days ago, I saw my onco, and we were discussing this. She clearly believes in chemo brain and the havoc it wreaks in our lives. She was very happy to learn that my quality of life has improved. And later that night, she called me to let me know that another woman had been in to see her with similar complaints, would I call this woman and give her the Magic Man's info? Duh. Of course.
Let me backtrack a little here....
Earlier this summer, I had to have a regular check up with my surgeon. The checkup went fine, but that day had been a particularly bad, emotional, depressed day for me. I was totally out of sorts. Insanely so.
In the office, my blood pressure was sky high, higher than it has ever, ever been. Scary high. Crazy high. I never have problems with high blood pressure, so that was odd. I'd totally lost it on The Eldest on the drive up to the appointment over something totally stupid. I was weepy. It was crazy.
Near the end of my appointment on this particularly, spectacularly bad day, I was crying about how horribly I was functioning. How confused I always was. How fuzzy my brain was. How I could hardly read.
Dr. The Cutter immediately knew what I needed. I needed to go see her friend, a psychologist, who treats people with chemo brain. I really think she thought I was losing it, because--being the rock awesome doctor she is--she called him right there, left him a message when he didn't answer, and called to follow up with me a few times in the days following.
I've not had a day that bad since (maybe not before, either), and I tracked it down to an increase in my Ambien dosage. Therefore, I should never have that problem again, but it sure was scary.
Since I didn't feel so fragile once I stopped taking Ambien, I put off calling the chemo brain doctor as I was thinking of him. Yet, eventually, I did get around to it. And I am so happy that I did. It has changed my life more than I could have imagined, and I foresee more changes in the future.
For starters, when I finally did get around to calling him, he remembered who I was--and what Doctor the Cutter had said about my mental state on the day she last saw me. He immediately agreed to set up an appointment with me and deal directly with my insurance company because one reason I hadn't called sooner was the "deer in the headlights" position I find myself in whenever I have to do such things as call insurance company or sort out such details.
So, one day in July, I met the Magic Man of Maumee as I've come to think of him. We had a chat. I detailed all of my chemo brain problems and frustrations, how my life was falling apart.
It's hard to even put it into words....for starters, I was having incredibly hard times finding words, most notably nouns, even common every day words.
Here's an example: my sons' names. Sure, like everyone, I tend to call child A by child B's name. I've always done that. But for the last year or so, I can be staring right at a child and not be able to retrieve the name. I'd just stare blankly. There were other, more disturbing things. Like not being able to remember what I was doing while I was doing it. Not being able to follow along in meetings. Not being able to read a student essay without losing track of what I was doing. Forgetting in the middle of writing a comment on said student's essay what it was I was commenting upon. Being nearly totally incapable of basic math. Having a hard time reading fiction. A general lack of critical thinking and analytical ability. Much worse spelling, which has never been a strong suite for me, than normal.
And then there was my inability to remember what I needed to do, to carry through with what I should do, to complete what I started, to start. I'd find myself frozen with anxiety, unable to start things: housework, grading, planning, phone calls.
I was perseverating on certain topics, to the point that I was losing sleep.
I was depressed.
I could barely do my job. Teaching was hugely, hugely stressful for me. I'd lost my pizzazz. I could barely do what I needed to do. I was constantly forgetting basics. For instance, I had to set an alarm on my phone to remind myself to take attendance! I wouldn't get prep work done in a timely manner. I felt as if I weren't making sense when I'd talk to my students individually.
I couldn't grocery shop and then figure out what meals to prepare. Food regularly rotted in the fridge because I'd forget I'd made it in the case of left overs, or I'd forget to repackage and freeze it in the case of buying large quantities of chicken quarters several times, or I'd forget to prepare what I'd bought.
We have eaten so much pizza in the last year......gag.
I couldn't retell simple movies that I'd just seen. Heck, I could hardly watch a movie and follow along.
I'd get confused really easily. I couldn't remember strings of numbers, even saying them out loud.
In general, I felt really stupid and incapable and everything was so damn hard. So, so, so hard. My quality of life was certainly diminished.
So the Magic Man of Maumee and I talked. I explained. I described. I detailed. The Magic Man explained what science and research has shown about the brains of those who have such complaints after chemo. It's not everyone who has such changes, although women--especially--who are required to multi-task tend to find the changes most disturbing. Women in a certain age range tend to find them more obvious and to bounce back less quickly than other women. I tend to fall into all of the "risk" categories, including one of the biggest for significant negative change: having ADHD.
For years, I'd suspected that I had ADHD. I started wondering when my one son was diagnosed with pretty extreme ADHD. I then had a student who did a fairly extensive research essay about girls with ADHD, and, in doing her research, she got tested and was diagnosed, began treatment, and her life improved greatly.
Yet, I couldn't get my life together enough to do anything about my suspicions...which is very typical of a person with ADHD.
So, the Magic Man gave me some tests. I aced 'em. He had my husband and one other person who would rather go nameless fill out some questionnaires. I "aced" those, too. If there is such a thing as "off the charts" in the area of non-attentive ADHD, it would be me.
The Magic Man's assumption is that I've always had ADHD but to a lesser degree, and that I'd been more or less able to cope, until doing two protocols of chemo aged me by 20 years and shrank my frontal cortex (I think that's what he said).
Anyway, it all made sense when he was explaining it.
He then gave me a bunch of other tests to rule out anxiety and depression and mood disorders and other, more serious, problems. Indeed, they were ruled out for the most part. At least the biggie, mood disorder, was ruled out. Many people with ADHD also exhibit signs of anxiety and depression, as do cancer endurers....so there were some blips on those tests, but nothing too significant.
After meeting three or four times, the Magic Man made a recommendation for some medication, which I started taking in August, and I've continued to see him for talk work and ADHD coaching.
The change has been phenomenal. Life certainly isn't perfect, but I'm able to participate again. I'm still overwhelmed by things with a lot of details. But for the first time in a long time, I feel engaged in the world. I'm not just going through actions in a daze.
I'm as on top of things as I've ever been since having children, I think. For example, I graded four sets of essays in three days last week without even noticing that I was doing it. Reading and commenting on them was easy, and it wasn't at the last minute. I *see* the flow of pedagogy in my classes for the first time in two years. I can plan things and execute them. I can be engaged in meetings. I feel much more alert (and don't go thinking it's because I'm taking speed or something for the adhd, because I'm taking a non-stimulant med).
Best is that for the first time in my LIFE, I can see how to work with my limitations and make life work. A huge part of that is the "coaching" the Magic Man is doing with me, helping me to think differently about time, helping me to work with instead of against my neurology. In a lot of ways, life is becoming the "easy" way I always saw it for so many others.
And this all reminds me of the first day my one son took his first pill for his ADHD--and trust me, I was loathe to the core to "resort" to meds with him--and he came to me and said, "Does everyone see the world so clearly? Why didn't you give me that sooner?"
I can still tell that my brain isn't what it once was. I still struggle for words. Writing is hard. Organizing my thoughts is hard. I certainly don't have the IQ I once had. I've been with my students for 4 weeks now and I'm still struggling to recognize them all and remember their names, but I'm way, way better off than I was at this point last year.
I still struggle to read, but I'm not struggling with student essays. And I am able to finish novels now. I can follow movies better. I'm sleeping better. I'm not fixating on negative thoughts so much. I'm much better able to organize the family.
Meals and shopping are still a struggle, and I'll be working on that area in October. Meanwhile, I've to a flow to my days, a flow that is intentional. I don't feel so overwhelmed by getting out of bed in the morning. I've been able to add activities to my schedule.
All in all, it's been a good thing, and the Magic Man thinks that at some point, I'll be able to stop taking the med. We'll discuss that in 12 months. I think I'll also be doing some brain training to try to get back some of the intelligence that I've lost.
Two days ago, I saw my onco, and we were discussing this. She clearly believes in chemo brain and the havoc it wreaks in our lives. She was very happy to learn that my quality of life has improved. And later that night, she called me to let me know that another woman had been in to see her with similar complaints, would I call this woman and give her the Magic Man's info? Duh. Of course.
Wednesday, September 7, 2011
Wanna be a guest blogger in October? Leave a comment here!
Hey all,
If you'd like to be a guest blogger here in October, which by the way is Breast Cancer Awareness month, leave a comment here (not on facebook) so I can keep track....
You don't have to blog about breast cancer. You don't have to have or have had breast cancer. I'd kind of like to keep the focus cancery and maybe tangentially related to life with cancer or observing cancer or being a caregiver or whatever.....but really it's up to you. Run it by me and I'm more than likely to give it the thumbs up.
Some ideas:
Not having breast cancer
Having another cancer that is over shadowed by the emphasis on bc
Being a caregiver
Living with a chronic illness
Having an invisible illness
being young, old, minority, poor, etc....and cancer
living in the shadow of cancer....
the importance of support
I dunno.....you will be the writer, not me.
Let me know....I have lots of people in mind, but I'd like you to step forward on your own:)
If you'd like to be a guest blogger here in October, which by the way is Breast Cancer Awareness month, leave a comment here (not on facebook) so I can keep track....
You don't have to blog about breast cancer. You don't have to have or have had breast cancer. I'd kind of like to keep the focus cancery and maybe tangentially related to life with cancer or observing cancer or being a caregiver or whatever.....but really it's up to you. Run it by me and I'm more than likely to give it the thumbs up.
Some ideas:
Not having breast cancer
Having another cancer that is over shadowed by the emphasis on bc
Being a caregiver
Living with a chronic illness
Having an invisible illness
being young, old, minority, poor, etc....and cancer
living in the shadow of cancer....
the importance of support
I dunno.....you will be the writer, not me.
Let me know....I have lots of people in mind, but I'd like you to step forward on your own:)
Monday, September 5, 2011
How many weeks? Where do you like it? What color? Memes for a cause
DISCLAIMER: I apologize for letting this blog lie dormant lately. I owe a HUGE apology for not handling my time better and keeping up with it. Also, tonight's topic is one I've been dwelling on for a few days, but just now sat down to work on. This will be neither well organized nor clear, I'm guessing. I'm trying to cram in a little bit of TV watching at the same time before the start of a particularly hectic week during a particularly hectic semester.
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Social networking has given rise to the phenomenon of various memes of all sorts. However, one particular type of internet meme is the "awareness meme." The most basic of these are found on facebook and take the form of "25 Things" or whatever. If you are on Facebook, you've seen these. "25 things I've never told anyone" or "Put your ipod on shuffle" or whatever. Another common one is the "cause" meme. This type always ends with "if you care about cause X, post this to your status....only a certain percentage of you will" (implying that if one doesn't spam their friends with statistics about child abuse or leukemia or fire fighters or nurses or whatever, one doesn't care. Again, whatever.
Some of the oddest memes in the category of the cause meme are the "keep this secret from men" memes. Two years ago, this meme took the shape of an oblique reference to bra color, the following year, it was a weird reference to where women hang their purses--masquerading as a sex reference: "I like it on the kitchen counter" or "I like it under the table" or "I like it in the closet." This year, it's something really, really weird: a misleading statement indicating a woman is pregnant and craving a specific candy. What all of these odd memes have in common is that they are, in theory--and theory only--, intended to raise awareness of breast cancer.
Even as I type this, it makes no sense.
I know no one who spreads these intends to be anything but helpful and supportive. So I really feel kind of bad for saying this, and I sincerely hope I hurt no one's feelings.
But dang, these things trivialize breast cancer.
And they don't raise awareness. Remember, they are secret. They are coded. Only people in the know can participate. It's just stupid.
Specifically:
1) Keeping this a secret from men serves what purpose? Men can get breast cancer, too. These poor men are often overlooked. What an awkward cancer for a man. How does a man say, "I have breast cancer" to his buddies? Where does a man go for support? Also, men in the lives of women with breast cancer are deeply affected by breast cancer. The lives of my husband and my three sons will never, ever be the same since my diagnosis. More than worrying about my own life, I've worried about theirs, especially my sons'. Cancer has affected their grades, their personalities, their sense of security and fairness, and their futures. Trust me, they are NOT better off for the experience. None of us are.
2) When it comes to the bra color meme, what? Because of breast cancer, I'll never have to wear a bra again. Seriously. Even with reconstruction, my breasts are so unnatural that a bra is redundant. Oh, but that doesn't matter because thanks to radiation, the tissue in my chest is so tight that it still feels like I have the band of a bra around my chest. I'm not sure that I'd even be capable of wearing a bra. Thanks to radiation and/or surgery, I seem to have some nerve damage in my left arm, resulting in carpel tunnel and what is apparently untreatable tendonitis in my elbow. Add to that a minor case of lymphedema in that arm, and a bra strap on my shoulder would probably cause tingling, numbness, and maybe more swelling.
I'm not alone. Some breast cancer endurers don't need bras because they don't have breasts. Others need special bras to hold their prosthetic breasts. Those don't tend to come in sexy colors.
The bra meme was trivializing. Saddening.
3) The purse meme, alluding to where one likes to have sex, is an odd one. Breast cancer, although the disease contains the word "breast," is not sexy. A mastectomy is not sexy. It's an amputation. Some of use even have "ghost pains" or sensations where our breasts should be. I still feel the nerves that used to lead to my nipples--tee hee she said nipples--used to be. Only I don't have nipples. I can't even feel sensation on the front of my breasts. "Feel your boobies!" "Save the ta-tas!" "Save second base!" Sensationalizing the sexiness of breasts, all of it, is misleading as all hell. Being nauseous, bald, bloated, and in pain does nothing to make a woman feel sexy. Lots of women are suddenly thrust into menopause, regardless of their age, when they start chemo. Again, not sexy. And what about those poor men who get breast cancer? How sexy can they feel? And then there is the insanely huge number of strangers who get to look at, feel, discuss, take pictures of, and mutilate the breast cancer endureres breasts? Not sexy, especially when those ever so attractive hospital gowns are involved, doubly so when in a hospital gown under fluorescent lights.
A meme supposedly intended to raise awareness but really makes it into a sexy little game is insulting. Totally.
4) This year's "I'm X number of weeks and craving Y" meme is probably the worst. For starters, who ever thought of it is not very forward thinking. Slap that statement up on facebook and suddenly people start congratulating you...and then feeling like idiots when you say, "Oh, I'm not pregnant!" How many people out there thought that they were finally going to be grandparents? That a true miracle had occufred, only to find out it's some odd joke with a purpose kind of thing? What about the husbands reading their wives' statuses thinking, "Oh. My. God! I don't want another kid! I thought we'd taken care of that!!!! Now what?!?"
Worse, though, are the people who have been struggling with infertility who have to see these statuses. Their struggle turned into a joke of sorts. I can't even imagine what this meme has done to people with infertility.
But in the realm of breast cancer, it's doubly insulting and insensitive.
Chemo has a way of making people infertile. Some regain their fertility. Others never do.
Many women opt to undergo oopherectomies--having their ovaries removed--to prevent more cancer. Some who are BRCA positive (gene positive) have much higher odds of passing the gene on to their future children, making pregnancy a real double edged sword. Those same women have a much higher incidence of other "female" cancers, cancers which lead to--you guessed it--infertility.
Estrogen, a necessary female hormone for "cycling", also increases one's risk of breast cancer. So, just being a woman who is fertile is a risk.
So this meme is simply thoughtless.
5) But the worst of all of this is that memes are not going to raise awareness. I'm not even sure what it means "to raise awareness." I've written about awareness in the past, both here as well as here.
What I want people to become aware of is that breast cancer isn't fun. It isn't pretty. It's not feminine. It's not sexy. Most of us don't just get on with our lives. We are irrevocably changed. We are forced to make the best of it, for the most part. What other option is there? It doesn't "make us better people." We were pretty darn good people before this. Nothing we did caused this, and there's really very little people can do to prevent it. Well, having breast buds removed at birth would be a good preventative. Beyond that, there's not much that an individual can do. Healthy people get breast cancer. Thin people get breast cancer. Vegetarians and happy people get breast cancer. Old people and young people get breast cancer. If you have breast tissue, you are at risk.
No one wants to think that way, but that's what people need to be aware of.
And that's what's been on my mind lately.
Now, before I head off to bed so that I can get up at some unholy hour to go see my Occupational Therapist for more wasted time trying to fix my tendonitis--which is not improving--and over which I am very depressed, I'll give a brief update of what's going on here at the homestead:
School is back in session. The Eldest has left to participate in www.geojourney.org for his first semester of college. I've talked to him twice since he left. He's having fun. He also has officially moved out of the house and has an apartment on the other side of town for when he returns. In other words, he's fledged and left the nest. The Feral Third has moved into The Eldest's bedroom and has new furniture, new design, and it's all preteen kind of stuff. The Middle is doing well in school this year and is actively working with Organizing for America as an intern and is heavily involved in helping to defeat HB 194 and SB 5 as well as helping a friend of ours who is running for city council. He got to meet President Obama in June, and I think he's still walking in air from that experience.
I'm back in the classroom, teaching my typical fall schedule as well as an extra course to fill in for a colleague who has been struggling with cancer and a liver transplant. The great news is, he's doing fantastically, and for that we are all exceedingly happy. I'm also finally in a position to do more than just show up and teach. I'm actually excited to be revamping some of my assignments this semester and also participating in a learning community.
The Mister Mister, who has been out of work for nearly two years has finally found a sustainable job that pays more than his unemployment compensation. I don't want to talk too much about that because I don't want to jinx it.
The biggest news, though, is that we've opened our home to an 11 year old boy whose family is homeless. His story isn't really mine to tell here. However, I will say he's the eldest of 5 children. His father isn't in the picture at the moment. His mother is out of work and has nowhere to live. None of us really have known this child nor his family other than as others who sit on the sidelines at soccer games. He plays on the same team as The Feral Third. I figured that we have the capacity, and he's a child in need. So, he's here during the week for now. Supposedly, I'll be getting temporary legal custody tomorrow. My parents gave me the opportunity to expand my horizons by inviting foster kids to live with us when I was young. It wasn't always easy, but sometimes growth isn't. I think my brother and I are better for it. I know my foster sisters were. I hope that this experience also ends up having a positive net gain for all involved.
It's nice to be back here. I've missed it.
One final thing: I'm inviting people to be guest bloggers here in October, "Breast Cancer Awareness" month. If you'd like to be a guest, let me know! I look forward to hearing from you:)
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Social networking has given rise to the phenomenon of various memes of all sorts. However, one particular type of internet meme is the "awareness meme." The most basic of these are found on facebook and take the form of "25 Things" or whatever. If you are on Facebook, you've seen these. "25 things I've never told anyone" or "Put your ipod on shuffle" or whatever. Another common one is the "cause" meme. This type always ends with "if you care about cause X, post this to your status....only a certain percentage of you will" (implying that if one doesn't spam their friends with statistics about child abuse or leukemia or fire fighters or nurses or whatever, one doesn't care. Again, whatever.
Some of the oddest memes in the category of the cause meme are the "keep this secret from men" memes. Two years ago, this meme took the shape of an oblique reference to bra color, the following year, it was a weird reference to where women hang their purses--masquerading as a sex reference: "I like it on the kitchen counter" or "I like it under the table" or "I like it in the closet." This year, it's something really, really weird: a misleading statement indicating a woman is pregnant and craving a specific candy. What all of these odd memes have in common is that they are, in theory--and theory only--, intended to raise awareness of breast cancer.
Even as I type this, it makes no sense.
I know no one who spreads these intends to be anything but helpful and supportive. So I really feel kind of bad for saying this, and I sincerely hope I hurt no one's feelings.
But dang, these things trivialize breast cancer.
And they don't raise awareness. Remember, they are secret. They are coded. Only people in the know can participate. It's just stupid.
Specifically:
1) Keeping this a secret from men serves what purpose? Men can get breast cancer, too. These poor men are often overlooked. What an awkward cancer for a man. How does a man say, "I have breast cancer" to his buddies? Where does a man go for support? Also, men in the lives of women with breast cancer are deeply affected by breast cancer. The lives of my husband and my three sons will never, ever be the same since my diagnosis. More than worrying about my own life, I've worried about theirs, especially my sons'. Cancer has affected their grades, their personalities, their sense of security and fairness, and their futures. Trust me, they are NOT better off for the experience. None of us are.
2) When it comes to the bra color meme, what? Because of breast cancer, I'll never have to wear a bra again. Seriously. Even with reconstruction, my breasts are so unnatural that a bra is redundant. Oh, but that doesn't matter because thanks to radiation, the tissue in my chest is so tight that it still feels like I have the band of a bra around my chest. I'm not sure that I'd even be capable of wearing a bra. Thanks to radiation and/or surgery, I seem to have some nerve damage in my left arm, resulting in carpel tunnel and what is apparently untreatable tendonitis in my elbow. Add to that a minor case of lymphedema in that arm, and a bra strap on my shoulder would probably cause tingling, numbness, and maybe more swelling.
I'm not alone. Some breast cancer endurers don't need bras because they don't have breasts. Others need special bras to hold their prosthetic breasts. Those don't tend to come in sexy colors.
The bra meme was trivializing. Saddening.
3) The purse meme, alluding to where one likes to have sex, is an odd one. Breast cancer, although the disease contains the word "breast," is not sexy. A mastectomy is not sexy. It's an amputation. Some of use even have "ghost pains" or sensations where our breasts should be. I still feel the nerves that used to lead to my nipples--tee hee she said nipples--used to be. Only I don't have nipples. I can't even feel sensation on the front of my breasts. "Feel your boobies!" "Save the ta-tas!" "Save second base!" Sensationalizing the sexiness of breasts, all of it, is misleading as all hell. Being nauseous, bald, bloated, and in pain does nothing to make a woman feel sexy. Lots of women are suddenly thrust into menopause, regardless of their age, when they start chemo. Again, not sexy. And what about those poor men who get breast cancer? How sexy can they feel? And then there is the insanely huge number of strangers who get to look at, feel, discuss, take pictures of, and mutilate the breast cancer endureres breasts? Not sexy, especially when those ever so attractive hospital gowns are involved, doubly so when in a hospital gown under fluorescent lights.
A meme supposedly intended to raise awareness but really makes it into a sexy little game is insulting. Totally.
4) This year's "I'm X number of weeks and craving Y" meme is probably the worst. For starters, who ever thought of it is not very forward thinking. Slap that statement up on facebook and suddenly people start congratulating you...and then feeling like idiots when you say, "Oh, I'm not pregnant!" How many people out there thought that they were finally going to be grandparents? That a true miracle had occufred, only to find out it's some odd joke with a purpose kind of thing? What about the husbands reading their wives' statuses thinking, "Oh. My. God! I don't want another kid! I thought we'd taken care of that!!!! Now what?!?"
Worse, though, are the people who have been struggling with infertility who have to see these statuses. Their struggle turned into a joke of sorts. I can't even imagine what this meme has done to people with infertility.
But in the realm of breast cancer, it's doubly insulting and insensitive.
Chemo has a way of making people infertile. Some regain their fertility. Others never do.
Many women opt to undergo oopherectomies--having their ovaries removed--to prevent more cancer. Some who are BRCA positive (gene positive) have much higher odds of passing the gene on to their future children, making pregnancy a real double edged sword. Those same women have a much higher incidence of other "female" cancers, cancers which lead to--you guessed it--infertility.
Estrogen, a necessary female hormone for "cycling", also increases one's risk of breast cancer. So, just being a woman who is fertile is a risk.
So this meme is simply thoughtless.
5) But the worst of all of this is that memes are not going to raise awareness. I'm not even sure what it means "to raise awareness." I've written about awareness in the past, both here as well as here.
What I want people to become aware of is that breast cancer isn't fun. It isn't pretty. It's not feminine. It's not sexy. Most of us don't just get on with our lives. We are irrevocably changed. We are forced to make the best of it, for the most part. What other option is there? It doesn't "make us better people." We were pretty darn good people before this. Nothing we did caused this, and there's really very little people can do to prevent it. Well, having breast buds removed at birth would be a good preventative. Beyond that, there's not much that an individual can do. Healthy people get breast cancer. Thin people get breast cancer. Vegetarians and happy people get breast cancer. Old people and young people get breast cancer. If you have breast tissue, you are at risk.
No one wants to think that way, but that's what people need to be aware of.
And that's what's been on my mind lately.
Now, before I head off to bed so that I can get up at some unholy hour to go see my Occupational Therapist for more wasted time trying to fix my tendonitis--which is not improving--and over which I am very depressed, I'll give a brief update of what's going on here at the homestead:
School is back in session. The Eldest has left to participate in www.geojourney.org for his first semester of college. I've talked to him twice since he left. He's having fun. He also has officially moved out of the house and has an apartment on the other side of town for when he returns. In other words, he's fledged and left the nest. The Feral Third has moved into The Eldest's bedroom and has new furniture, new design, and it's all preteen kind of stuff. The Middle is doing well in school this year and is actively working with Organizing for America as an intern and is heavily involved in helping to defeat HB 194 and SB 5 as well as helping a friend of ours who is running for city council. He got to meet President Obama in June, and I think he's still walking in air from that experience.
I'm back in the classroom, teaching my typical fall schedule as well as an extra course to fill in for a colleague who has been struggling with cancer and a liver transplant. The great news is, he's doing fantastically, and for that we are all exceedingly happy. I'm also finally in a position to do more than just show up and teach. I'm actually excited to be revamping some of my assignments this semester and also participating in a learning community.
The Mister Mister, who has been out of work for nearly two years has finally found a sustainable job that pays more than his unemployment compensation. I don't want to talk too much about that because I don't want to jinx it.
The biggest news, though, is that we've opened our home to an 11 year old boy whose family is homeless. His story isn't really mine to tell here. However, I will say he's the eldest of 5 children. His father isn't in the picture at the moment. His mother is out of work and has nowhere to live. None of us really have known this child nor his family other than as others who sit on the sidelines at soccer games. He plays on the same team as The Feral Third. I figured that we have the capacity, and he's a child in need. So, he's here during the week for now. Supposedly, I'll be getting temporary legal custody tomorrow. My parents gave me the opportunity to expand my horizons by inviting foster kids to live with us when I was young. It wasn't always easy, but sometimes growth isn't. I think my brother and I are better for it. I know my foster sisters were. I hope that this experience also ends up having a positive net gain for all involved.
It's nice to be back here. I've missed it.
One final thing: I'm inviting people to be guest bloggers here in October, "Breast Cancer Awareness" month. If you'd like to be a guest, let me know! I look forward to hearing from you:)
Saturday, August 6, 2011
Tuesday, July 12, 2011
Komen is OK, but not for the Cure.
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 :)
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 :)
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.
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