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:)

Update to previous Addendum...

I'm doing better.  Still pretty blah, but overall better.  As far as the procedure goes, I have no more discomfort to speak of.  There's a tightness, almost like the feeling of a bra, but all in all, rarely do I have any real discomfort any more.

Psychologically, I'm doing better.  I realized when it was refill time, that I had more Lexapro left than I should, so I guess I kind of forgot to take some after surgery, and therefore crashed pretty hard in that second week. 

However, I'm also noticing some disturbing symptoms in my left arm, my radiated side.  It's a little swollen, but there's also a tingling and feeling of discomfort.  I've slacked off on wearing my compression sleeves since the surgery, and I'll start being more diligent about that this week, but I have noticed it in the past when I'm wearing my sleeve, too.  The swelling I can trace directly to smashing the back of my hand on the edge of a piece of furniture while playing Dance Central.  As the bruise has faded, the puffiness has gone down.

However, as much fun as I've had choosing sleeves, and as much as I didn't mind wearing them last year, I really don't like it now.  At this point, my hair has grown back.  If you didn't know me, you'd never know that I'm a "survivor."  And the sleeve is like a neon sign that says, "Hey, something's not quite right with this chick."   Not only does my body not feel like my body, not only does my mental state not feel like me, not only do people who know me look at me differently, but dagnabbit, strangers do too.  And it is a neon sign, like being obviously pregnant, that encourages people to just get into my business, like the elderly gentleman who approached me at the community center one day or the woman who hounds me there and thinks she's my best buddy because she, too, had cancer.  My sleeve was what prompted her to come up and talk to me, and now I can't get rid of her.

It's only recently that these things have bothered me.  I don't know why they do.  And I don't hold it against these people.  This is clearly MY issue, not their issue.  I just want to blend.  I want to be the wallflower I enjoy being.

I didn't get to see Dr. Mo for my appointment.  She had to reschedule.  I see her this coming week.  Then I imagine the rounds of medical tests will start.  Since I've met my co-insurance and deductibles for the year, I guess we might as well throw a few extras in there for good measure.  After all, they'll be free.

Thanks for everyone's concern.  I think getting back to work, having a reason to get out of the house, having some purpose for every day has been really good for me.  Who would have thought that teaching would keep me sane?  Generally, I feel it's the other way around....

update June 22, 2010

I posted this as a status update on facebook, so for those of you here who aren't there, here ya go:)

I have more to say on this and owe a more complete update, but must go to bed. I promise to be more forthcoming in the near future.

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good check up with radiation onco today. Dr. F was as pleased with my current health....low bp, low heart rate, clear lungs, good cardiac echo, skin and tissue not showing any issues or contractions and showing lots of flexibility. He says he anticipates that reconstruction surgery will go well and there will be goood... results. He anticipates the fatigue will recede over the next 6-12 months.

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Early June 2010 update

Wow. I can't believe it is approaching mid-June already! Where has the time gone?

It's going to start blowing by now.

I leave for a week of scoring AP exams in Louisville in two days. Somehow, that week always seems to last 10 days, what with one day preparing to leave and two days decompressing after returning. It will be interesting to see how this year goes given my decrease in cognitive function, which seems to still be an issue with immediate recall and focus, and increase in fatigue, which doesn't seem to be decreasing at all and at times is quite debilitating.

The trip to L'ville comes right on the heels of our trip to Knoxville/Cumberland Gap. It would have been nice to have taken that particular trip for a happier reason. It almost seems wrong to have used the need to attend a funeral to take a short vacation, but it also seemed like the right thing to do.

The memorial service for Henry Granju was beautiful. The music was lovingly chosen. Dylan's "Forever Young" was very appropriate, and touching given that it was the lullaby I sang to my children and was also played at the memorial service for our babies. Hearing hundreds of voices sing "Let it Be" was also beautiful. Chris, Henry's father, wrote and delivered a very touching eulogy.

I was worried for a moment that the ground would open up when the Hubbell-Staeble clan went up for communion. It was nice to be back in an Episcopal Church. Genuflecting rocks my socks!

Later Saturday, after spending some time decompressing with Louis' cousin and her family, the kids and I loaded up and headed to the Cumberland Gap to camp. Given that we didn't really have a plan or know what we were getting into, it turned out rather well. We found a decent camp site, got set up, and set out for food. Little did we know that we chose the wrong direction on the highway, directly away from the nearest town with real eateries and options. Instead, we drove, and drove, and drove, and drove, and finally, a nice woman in a small gas station with what was called a "deli" said she'd make sandwiches for us. It appeared that nearly all gas stations had a "deli." They certainly use the term loosely: bologna sandwiches and chicken salad, all served up on either white bread or hamburger buns. For the vegetarians in our midst, the pickin's were mighty slim. Nathan ended up with American processed cheese food slices on a bun, and Patience opted for cold, undiluted Campbell's vegetable soup.

Sunday dawned waaaaay too early as far as Aidan and I were concerned, but Tynan, Patience, and Nathan went off for an early morning hike. Clearly these flat-landers, born and bred, were intrigued by the topography. We later all took a hike, stood in the middle of the Gap, etc. and then headed into a real town for lunch, during which it started to rain, so we then went to see a movie. Thank the goddess that matinees were $2. Marmaduke the movie was an ideal time for me to catch up on some sleep. When we came out, the sun was out, humidity was high, and we were happy to head back to the campground, where the kids all took another long hike and I lounged and read.

We managed a rip-roaring fire that night, turned in early, slept fairly well albeit a little damp. Nathan and Patience woke up and went running, which solidified in Patience's mind that she does NOT appreciate hills for much more than their beauty, then we packed up and got on the road.

It is so cool to have other drivers in the family. Nathan did most of the driving and I got to nap and read for most of the drive. I, of course, got the boring part, between Dayton and BG.

Camping after the funeral was a nice, healing experience. It was a trauma free trip, not counting the accelerated heart beats caused by the two Brown Recluse spiders we stumbled across and the Black Widow Spider that was on Nathan's leg. Other than that, the kids were very well behaved and enjoyable to be with. It was a nice way to kick off the summer and helped us all recover from the past year. It also gave Louis time at home, without us to get in his way, to scrub the carpets and work on grouting the shower stall....not exactly fun times, but necessary chores best done when others aren't around to bung them up.

One good thing about fatigue is that it enables one to sleep deeply and solidly in the middle of the woods, bear warnings be damned.