Go Pink!

It’s that time of year again–October, which is breast cancer awareness month.  So I get to experience, once again, my ambivalence toward the whole Pink Stuff issue.  Like, aren’t we “aware” enough already?  Why must they keep beating us over the head with it?  Plus, there are so many other cancers which don’t get nearly the same amount of attention, but are equally deserving of attention and research money.  And not to mention other diseases, like CFIDS, which don’t even rate in terms of money and publicity.  This makes me cringe.

But, I kind of understand it.  Because it was not that long ago that it was impolite to mention the word “breast” or the word “cancer” in public, and the two together were like unthinkable.

But I think I know why and how that changed.  It was the book Our Bodies, Ourselves.  First published in 1971.  It’s now in its 9th edition (published in 2011) and its focus has changed somewhat.  In 1971, it was revolutionary, and was open warfare on doctors by women.

At that time, the standard of care for a diagnosis of breast cancer was radical mastectomy:  removal of the breast, the muscles of the chest wall underneath that breast  and most of the lymph nodes under the arm.  This was a case where the treatment was nearly as bad as the disease.

And even then it seems, the state of knowledge was that that probably wasn’t necessary.  But the authors of the book said, practicing doctors (who were mostly men) don’t really care.  After all, it’s only women, so who cares?  The whole point of the book really was for women to advocate for themselves and to stop buying everything doctors told them.  They succeeded.

Which falls into the category of “Be careful what you wish for”.  For the most part though, it worked.  The standard of care now is:  radical mastectomies are never done at all.  And a “modified” radical is: remove all the above except the muscles of the chest wall.  And it is now the last choice, not the first.  The downside is that women who may actually need that are more reluctant to do so.  Plus you get Pink Overload every October.

And yet.  I have relaxed a bit about the issue now.  Even if breast cancer hogs all the attention and a lot of the money, a rising tide lifts all boats.

This month, the local newspaper is sponsoring Go Pink!  An awareness effort that other cities are apparently participating in also.  It kicked off on Thursday, October 4th.  That day, driving to work, pink was everywhere. I have never seen an entire city do something like this.  Eventually I had to suspend my embarassment and cynicism about it, and just be amazed.  It made me cry.  A rising tide lifts all boats.

A pictorial history:

 From my drive into work.  The FastSigns store next door to the T-Mobile store.

The pink Poinsettias at Publix Grocery.

The next photos are from the newspaper, the Tallahassee Democrat.

Tallahassee Memorial Hospital.

The (Tallahassee) Leon County Courthouse.

The State Capitol.

The New York Times, And Newspapers In General

I subscribe to the New York Times Premium Puzzles, and it isn’t free, but it isn’t expensive either.  I do their puzzles every day, which you can do for free as long as it’s the same day.  Premium allows you to access previous days’ puzzles, plus access to what they call their Second Sunday puzzle, which includes the Acrostics.  I am addicted to Acrostics!  It also allows you access to Play With A Friend, so you can interactively solve the puzzle with another person or more than one person.  My sister and I do this together every Saturday (Saturday being the hardest puzzle and requiring two brains), so it’s very important to me to be able to access it.  My sister and I use it as our weekly catch-up time.

I remember a friend who used to call his mother every weekend, and he dreaded it.  This is never a dreaded contact, I look forward to it.  If we have nothing to say beyond doing the puzzle together, that’s fine too.  We don’t have to scramble to find a topic if there really isn’t one.   We touched base.  We had fun.  We know we are each okay.  Mission accomplished.

It’s a fixed appointment.  If either of us did not show up without prior notice, we would know something was wrong.

So this week…it would not allow me to type in either the Acrostic or Play With A Friend.  I discovered that Friday night and did everything I could do on my end to try to fix it.  Logged off the NYT and logged back on (about a hundred times).  Restarted the computer (about a hundred times).  Emptied the cache.  Cleared everything I know how to clear.  And it still didn’t work.

So, in desperation, I contacted the NY Times Help.  And…Arrgh. I’ve done this before, and should have remembered.  I got back an automated response suggesting I do all the things I’d already done.  I just wanted to scream.  I am so frustrated!  But what can I do?  Well, I replied, I already did that.  Could a real person look into this?

It does make me a little sad, because I’m well aware of the issues that newpapers are going through.  (Like, death.)  But if I have a problem with my Kindle or with my cell phone, I can get customer service help 24 hours a day from Amazon or Sprint. (Of course they will be from India or Uzbekistan, but…that’s another discussion.)  Sometimes while I’m searching for the answer to my problem, someone will pop up on chat and offer to help.  Or I can choose the chat option to begin with.

Not so with the NYT.  Apparently their people work Monday through Friday and have pre-set automated responses for when they are not there.  This seems like a scheduling problem to me.  You could have shifts that go from Tuesday through Saturday, or Wednesday through Sunday.  That way you would cover every day of the week….even if they were all 8 to 5 shifts.  Inquiries after that time would be answered the next day.  They need a manager.

I am sad about newspapers though.  Every weekday, I read the paper and ink version of my local paper.  I won’t subscribe to the online version, because the fees are more than the fees for the New York Times, which just seems wrong to me.  And the NYT lets you read 10 articles a month for free.  But I don’t see that lasting long.  I like newspapers.  I like real books.  I like libraries, and the smell of old paper.

And yet, as I mentioned, I have a Kindle, a cell phone, a Bluetooth.  I have Windows 7 and more than one email address (some of which I have to remember to check.)  I have a foot in both worlds, so to speak.  I know people who are steadfast in refusing to give up the “old ways”.  For instance.  I’m on the Board of an organization and there are various ways to notify us of meetings.  When that task falls to the former president of the organization, he calls you on the phone.  You will never get me that way.  He has an email address, but he doesn’t like it and doesn’t trust it.  Sad.   If you don’t change with the times, you will become very isolated.  I don’t know what he’ll do if they ever stop publishing the paper and ink version of the local newspaper.   Which has happened in other cities (Seattle).

However, it can also get out of hand.  I, for example, don’t have and never will have a Twitter account.  I think the whole concept is laughable and useless.  That said, apologies to Twitter fans. I once said a similar thing to a blogger friend and he was highly insulted.  I’ll leave it at, this is a bit too much connectivity for me.  The best thing about technology for me is that it has allowed me to become more disconnected, rather than less.  I need lots of down time.  To read in the back yard.  To contemplate how annoying and yet clever squirrels are.  To get stung by fire ants (or some other unknown critter)and take myself to the ER.  I don’t think sending a Tweet about it would be helpful.

Having said this about newspapers, next month I will be a somewhat reluctant “star” in the local newspaper.  They are participating in a campaign called Go Pink! Which is apparently a national endeavor by newspapers. Each day they are highlighting one local woman who has survived breast cancer.  I have very mixed feelings about the whole pink stuff thing.  But overall, I think this is a good idea.  This is the face of cancer:  someone who is your neighbor or co-worker.  And there were things I wanted to say.  When the article comes out, I will let you know, and provide a link to the online video of the interview (which I will probably have to pay for, Ha!)  The reporter did the video using an iPhone!  I am still amazed!

I love newspapers and I am prematurely mourning their deaths.  But I also love new ways to communicate too.  Like iPhones.

The Elephant in the Room

What elephant?  There’s an elephant here? 

So, here’s the deal.  On May 28th, I had an abnormal mammogram for the first time in five years.  Then I had to go for another one. Then I had to see the doctor.  Then I had to have an MRI.  Then I had to have a biopsy.  That was this past Thursday afternoon.  I warned my boss that I might not feel well enough to come to work on Friday.  Being a compassionate and totally understanding kind of guy, he said, “So let me get this straight.  You’re setting it up to give yourself a three-day weekend?”

My friend and fellow manager in another city said, Let’s ask him how he would feel the day after they’d been sticking needles in his dick for an hour. 

I was actually pretty okay the next day.  I wasn’t really in pain, but I was exhausted, and I was bleeding, and I couldn’t take a shower.  I wonder if that’s an acceptable reason to take a sick day in corporate America?  I personally think it beats the hell out of what I usually hear:  “I think I have the stomach flu.”  Hello.  The flu has nothing to do with your stomach.  Just take the day off, okay?  But don’t make something up. 

This is just in case you thought women have come a long way, baby.  I’m honestly not quick to assume that men are clueless just because they’re men.  I just happen to report to a guy with an astonishing lack of empathy.  You have to learn to work around it. 

So it’s been three weeks now, and I won’t know the results until next week.  Guaranteed by Wednesday, the tech thinks by Monday.  That’s the “advantage” to having previously had breast cancer.  I get to step to the front of the line.  A very, very dubious honor, to say the least. 

I had totally forgotten or suppressed the memories of how this plays out.  The area of concern on the mammogram will be something rather than nothing, but it could be benign.  So I forgot that this is the hardest part–the waiting.  Once you know what it is, you can have a plan.  Before that, the anxiety is crippling. 

I also forgot the part about the importance of the people you’re dealing with.  There is a point at which it’s you and the tech.  You are basically locked in a room with them, until the doctor comes in.  Your life and comfort are in their hands.  So my tech Liz said, “You do realize that this will be your life, don’t you?”

No one had ever put it to me that bluntly, and it hit me with the force of truth.  For other people, there might be a “wait and see” period, but for me, that will never happen again.  I might have to have more biopsies than other people, might have to suffer through more false positive results, but the alternative is worse.  I’ve been lulled into complacency for the last 5 years; that ends now.

The Fairy Finder

A few years ago, my friend Judith gave me a mobile for Christmas.  It’s nothing more than disks of mirrored glass, with a few wooden beads in between the disks.  Quite tacky looking, actually.  Probably cost about $1.99.  She bought one for herself as well.  (I can so identify with that method of Christmas shopping–one for you, one for me.)

I immediately hung it in the back yard, and I began to notice that when the light was just right and the wind was blowing ever so slightly, that the mobile throws little dancing circles of light on the ground. 

One day I was visiting her and spotted her mobile hanging on her back deck.  I thanked her again for mine, and she said, it was a pretty meager gift.  I said, Oh no, not true.  This is not just a mobile, it’s a fairy finder.  See, normally you can’t see fairies in the grass, but with this magic device, you can find them.  It’s like a fairy spotlight.  She completely cracked up, and said, Thanks–I can’t wait to tell my grandchildren about this.  We could just picture her grandchildren diligently hunting fairies.  What?  You didn’t find one?  You have to be quick!  Fairies are very fast-moving. 

Yesterday morning as I was making coffee, I looked out my kitchen window and the mobile was sparkling in the sunlight, in full fairy-finding glory.  I felt this sudden and indescribable stab of sadness.  Now I understand, why the word “stab” is used in this context.  That’s exactly what it feels like.  I go along with a sort of undercurrent of sadness about losing Judith, and then there is a moment like that one. 

Such feelings strike me once in a while.  Like when I’m at the grocery store in the frou-frou cheese section (usually buying Brie), I’ll spot a package of white Cheddar.  Judith loved white cheddar.  Before visiting her, I would stop at the store and pick up wine and crackers and cheese and fruit.  I can live with or without white cheddar personally, but I’ll spot a package of it and think, Well, I’ll never have to buy that again.  Stab. 

Don’t get me wrong.  I see that mobile every day of the world, and I visit the frou-frou cheese section of the grocery store at least weekly or more often.  My grocery shopping behavior is very European in style.  Buy two things today, and three tomorrow.  God forbid you should make a list and shop all at once for a week’s worth of stuff. 

So it’s only occasionally that I have these moments of stabbing pain.  I don’t know why some times and not others.  If I could figure that out, I’d put a stop to it right off the bat.  I have a sort of theory, which is that it comes from NOT thinking about something painful for a long time, and you think you’re conquering it, but it never really goes away.  It continues to collect, like water behind a dam, and one day, Poof!  The water wins, and a little break appears in the dam.  Inexorable seems like the right word to me. 

Anyway, they say (whoever “they” are) that eventually your loss is mitigated by happy memories; at least, that’s what you’re supposed to work toward.  I’d say I approve of that.  Wallowing is unhealthy. 

Judith died of breast cancer last July 21st.  I miss everything about her: her grace, her courage, her kindness, her intelligence, her curiosity, her extroverted nature, her occasional unapologetic opinionatedness, her fierceness, her contentiousness, her capacity for joy.  Yesterday I thought, I need to take that mobile down and put it away somewhere for a while.  I need a break.  But that wouldn’t work.  Sitting in the back yard at my picnic table, I’d still be able to “see” it, even if it were hidden in a lonely little cardboard box in the closet. 

I need that reminder of the happy times.  I don’t want to forget Judith, I just want it to be less painful to remember her.  And how could I do that without the Fairy Finder?

Slacktivism

This is a new word I learned yesterday, courtesy of my cousin Drew’s Facebook page.  For the non-Facebook users, a little background:  on Facebook, with a click of the mouse you can “like” something.  This can be anything from a comment to a TV show to a store (if I could find it, I would “like” Publix) to a cause. 

Drew posted something to the effect that clicking “like” on some pink ribbon thing was somehow supposed to increase breast cancer awareness?  One of the first responses said that it’s akin to creating or joining a group called People Against Rape.  Is there a group People For Rape?  One of the next comments called it slacktivism.  While I’ve never heard the term before, I got it instantly.  I had to laugh.  Like clicking I “like” the fight against breast cancer on Facebook was a noble activity.  There now.  My work is done.  I got the sarcasm of it, but I have a completely different take on it.  My next thought was, My, isn’t the younger generation quite a bunch of cynics? 

Then I had to laugh again.  I remembered that sarcasm and cynicism and anomie were the hallmarks of my own generation.  I can’t remember when or why, but I made a conscious decision at some point to stop worshipping the quick-witted retort.  (There are those who may say I’ve never quite mastered that.)  But in contrast to who I used to be, I take people more at face value. 

So I’ll say, aren’t we all slacktivists?  I’m for the fight against breast cancer. I’m for rebuilding New Orleans and Haiti, and protecting polar bears.  I’m against homelessness and famine and animal abuse.  But am I doing anything about it?  Not really.  I haven’t volunteered for Habitat for Humanity (although I would “like” them).  I’m not giving money to any of the causes I support, because I don’t have any.  (I will say this:  I tried to give money to the Red Cross after Katrina, but their website had crashed, so I gave the money to the Humane Society of the U.S. instead.)

I can no longer find it, but I once read an essay written by a woman who was quite bitter about “pink stuff”.  During October, which is Breast Cancer Awareness month, you are inundated with opportunities to support breast cancer research, supposedly.  Hershey’s sells Kisses wrapped in pink foil.  M&M’s makes pink M&M’s.  This woman made a number of valid points, including that there are in fact unscrupulous companies who simply capitalize on it.  If you want to support breast cancer research, and want to buy these products, read the package.  Find out how much of your money will be donated.  If they don’t tell you, don’t buy it at all. 

The other point she made was, what is the deal with breast cancer?  What about people with other cancers?    Why don’t they get the exposure, the dollars, the research, the rock stars?  I have my theories, but basically I would say, don’t knock it.  Breast cancer shines a light on cancer, period, a subject that even twenty years ago would not have been discussed in polite company.   

So last week, I had lunch at On the Border, the chain Mexican restaurant.  As they have done for at least three years, they’ve partnered with the Susan G. Komen Foundation.  Every hanging lamp in the ceiling was wrapped with a pink ribbon.  At the entrance, you could donate $1, $5, or $7.  For $7, you got a leather wristband with a pink ribbon charm sewn on.  I bought a wristband.  My waiter thanked me.  He told me that his mother had had breast cancer and been treated at M.D. Anderson.  He was so young and handsome, and already touched by cancer.  I was sincerely moved by his willingness to share this. 

So, I am not cynical.  If all you can do is click “like” on Facebook, I appreciate it .  As a person who had breast cancer, I still remember the days when people stopped speaking to me because apparently if they asked how I felt, they were afraid I would tell them.  And/or, they were afraid I would die, and didn’t want to be close enough to me to be really sad. 

Those people, I resent.  That considered, clicking “like” on Facebook to indicate your support for breast cancer research is a step up.  As my sister  (who has a tendency to cut to the chase) said today, “It’s a solidarity thing”.

Yes, it is.

Goodbye Judith, Part 2

Time:  You always think you’ll have a little more of it, but technically, you may not even have another 30 seconds.  Thankfully, our brains are not wired to keep that in mind all the time.  To live, we must proceed as if we’re immortal. 

The last time I saw my friend Judith while she knew it was about two months ago.  Astonishingly, she was preparing for a trip to Alaska.  Astonishing because she had had breast cancer that metastasized to bone 4 years ago.  She’d been through bouts of chemo too numerous to count and had had both hips replaced.  (Soon, there would be no more “good” bone to attach things to.  Plus, you can’t replace your whole skeleton.)

The Alaska trip consisted of a week’s cruise of  the Alaskan islands, followed by a week’s bus tour through the Canadian Rockies.  I’m not sure I even have the energy for something like that.  I made it a point to go see her just before she left.  Once I knew she was back, I kept meaning to go visit.  (A variation on the saddest words ever spoken:  “I kept meaning to…”).

On Monday morning, her sister Jill called me and said that last week, Judith became ill and was admitted to the hospital on Thursday.  She returned home on Sunday, but during her stay, they learned the cancer had also metastasized to the liver.  The doctors were giving her weeks to live at most.  Jill said if I wanted to see her again, I should come soon.  I asked when a good time would be–she said to come any time, that someone would always be with Judith at her house.  She said she also had put up a schedule at the house and if I could take any of the “shifts” I could sign up. 

I had a bad feeling about this.  I don’t want to assign this “bad feeling” the status of a premonition, because I don’t  believe in premonitions.  I think a “premonition” is a prediction people make based on actual information  stored in their brains, even if they aren’t consciously accessing that information as you would if you were, say, working a math problem.  So let’s call my “bad feeling” a sense of urgency. 

I wasted no time this time, and went to her house immediately after work.  Both her daughters were there, and so was…her lawyer.  Her daughter Gina apologized, but said they had just managed to get Judith back to bed after an exhausting and painful trip to the bathroom, and she needed to speak to the lawyer.  Gina thought this would take all Judith’s mental and physical energy, and asked if I could please come another time.  I assured her I knew I was taking my chances by just dropping by, and that I would try again the next day and that I would call before I came.   Gina said she would tell Judith I came by–I hope she did. 

When I called the next afternoon, there was no answer at the house and voicemail was turned off.  I called Gina on her cellphone, and reached her at… Hospice.  Later on Monday evening,  Judith was agitated and in great pain, but she lost the ability to swallow, so they could not get any of her pain medication into her.  Desperate, they called Hospice and asked if they could send someone to give her an injection.  Hospice recommended they bring her in.  So that’s what they did.  They called an ambulance at 11:00 P.M.

Gina’s next words were to apologize to me for “denying” me the chance to see Judith Monday evening.  I said, don’t say that.  I would have done the same thing.  She was just trying to take care of her mother and preserve what little strength and comfort she had left.  Like me and the meant-to visit, Gina had no way of knowing there would never be a later. 

So when I got off work that day–Tuesday–I went to a nearby bar and had two glasses of Pinot Grigio (one for me, one for Judith.  Many is the time we’ve sat on her back deck and solved the problems of the world over a bottle of Pinot Grigio).  Then I went to Hospice House. 

People who know me know this took something of Herculean effort on my part, emotionally speaking.  But I long ago decided I would see this through, no matter what it took.  If she was brave enough to endure dying, I was sure as hell not going to be a wimp about it myself. 

When I saw her, I knew she was dying right then and would never wake up.  My sole communication to her, which took a minute or less, was this:  I held her hand and said, “Hello Judith, it’s me Phyllis.  I just came to say hello.  Take care of yourself.”  There was not even an eyelid flicker.  She was breathing shallowly.  The problem for me was that as deeply sedated as she was, she was moaning.  I couldn’t escape the feeling that she was in pain.

On the drive home, I said to no entity in particular, since I don’t believe in “God” (and neither did she), “Please don’t let this continue.”  And I got my wish.  She was dead 17 hours later.  I don’t like to think about those 17 hours. 

I wish that I had gone to see her as soon as she returned from her Alaska trip.  So what I feel is regret, not guilt.  I did her no harm by failing to visit–the loss is all mine.  And we never ended a visit without saying I love you.  Whether I was there in person or not, she knew I loved her.  My regret is overshadowed by sadness, though.  As many good memories as I have, I am sad there will never be any new ones. 

I have a plan, which is that this New Year’s Eve, I am going to go to her “church” (if you can call it that).  Every New Year’s Eve, they have what’s called the Burning Bowl Ceremony.  You write something on a slip of paper that you’d like to leave behind in the year ahead, and then they burn it.  They also build a big bonfire in the yard where you can burn larger pieces of paper.

I spent New’s Years Eve in 2005 there with Judith.  My friend Art had just died, and I burned a long letter to him in the bonfire.  I’ll do the same for Judith.

Cancer and Humor

You may think there’s nothing funny about having cancer, and you would be right.  But that isn’t to say that it doesn’t have its funny moments, particularly where treatment is concerned. 

One of the scariest things about many serious medical procedures and tests is the machinery involved.  When you have radiation therapy they try to ease you into the scenario by introducing you to your new best friend:  Mr. Godzillatron.  In fact it’s called a linear accelerator and here’s a good description of it from www.radiologyinfo.org:  “The machine is the size of a small car, approximately ten feet high and fifteen feet long.”  It’s hard not to be intimidated when you’re left in a room alone with it.  You just hope it’s nickname isn’t “Hal”.  See what I mean: 

So one day, I had been carefully positioned on the table and the two therapists in the room were fooling with something on the back of the machine, when suddenly I heard one of them say something that sounded very much like “Oh shit.”  Then I heard a sound like a BB gun being fired, and in spite of being well-trained to Remain Perfectly Still, I had to turn my head to look.  The machine was spitting out little gold balls, one of which almost hit one of the therapists in the eye. 

Being the medical professionals they are, their first thought after the initial shock was for me.  That’s funny.  My first thought was for me too.  All I could think about in those few seconds was…these look like ball bearings.  This “arm” is going to fall on me.  As they were rushing to remove the arm from over my body, I was pretty much saying “Outta my way!” as I scrambled out from under it.  Once the machine quit spitting and we had all calmed down, one of them said.  “Wow.  Could you have moved any faster?”  And giggled.  And then the next therapist giggled.  And then the therapist in the control room.  And then me too, until we were all just holding our sides.  That of course is the laughter of the Greatly Relieved.  Disaster averted. 

It just so happened that in the course of my radiation–five days a week for seven weeks–I had to turn my head to the left during the procedure.  On the wall was this picture that I had to stare at for a solid four minutes every day.  On the wall to my right was a different picture, so one day I came in and said, “I have a big favor to ask.  Just for a while, could you switch the pictures, because I am sick and tired of looking at these same goddamn apples and pears every day.”

Barbara, the therapist, said, “I’d love to…but I can’t.  The pictures are bolted to the wall.” 

“What the hell?”, I said.  “Does the hospital think we’re going to steal them?  I think we’re too weak for that.  We have cancer!”

Just in case you think it’s just me being weird, the benefits of humor are described on no less than the website for the American Cancer Society. You would think I’d like to never think about the whole thing again, particularly the radiation.  In fact, I don’t miss the part about being fried, but I do miss the people.  I’m not sure why I’ve been thinking about it this week, but it could be that I ran into one of the radiation therapists in the grocery store.  The very one who almost had an eye put out by Mr. Godzillatron.

Weighing In on Breast Cancer

Or at least on the raging debate that has occurred this week.  Warning notice:  I’m about to express some opinions.  Some of those opinions will be supported by “facts” (I place quotes around “facts”, because facts can never be separated from our perception of them–that must be the philosophy student in me rearing its ugly head), but I will not be posting any links for you to check where I got my “facts”.  If you don’t believe me, look it up yourself.  As I am fond of saying, this is a blog, not a term paper.  You won’t find any op. cits. here.  Additional warning:  You can dispute the “facts” all you want unless it concerns my personal body, which you don’t have enough information about to dispute. 

That doesn’t mean you won’t get some links.  To begin with, Thursday’s op-ed column in the NY Times by Gail Collins, always one of my favorites, who pretty much pokes fun at the hysteria the “new” recommendations concerning mammograms has engendered.  “New”, as in, returning to previous recommendations, with now even more evidence to support them.  But the hysteria involves “rationing” and “death panels”.  God, you people (and you know who you are) make me tired.  I suggested to my most rabidly conservative friend that he read her column, and he did, and sent me a message afterwards that I would describe as a diatribe, if I weren’t trying to be kinder and gentler.  In his defense, his mother and many other people he knows have had breast cancer, so it is a very emotional issue for him.  Yeah, well, me too.  In her column, Gail mentions that she had breast cancer herself.  I think she should be cut a little slack for that.  But never underestimate the power of fear, and men fear for their wives, their mothers, their daughters, their sisters, and their friends, and fear is never subject to logic.  It would be foolish to think that only women are affected by breast cancer, and I’m not talking about the fact that men get breast cancer too, which they do.  I’m talking about it affecting the men who love the women who get it.  And if you are the person who has cancer, you feel very much that the situation is out of your control.  As the friend or family member of a person with cancer, you are that much more out of control.  It’s like helpless, then helpless once removed.  That’s why you find people with cancer comforting those around them;  it’s actually worse for you. 

Now we move to the “facts”.  Most breast cancers are extremely slow growing.  It takes years for a tumor to be large enough to be visible on a mammogram.  So two years is not an unreasonable interval. 

Most women develop breast cancer after age 50. 

The value of self-exams has been questioned for forever.  I understand in theory that if you know your own body, you’re better able to detect changes.  Nothing wrong with that.  The problem is that most women don’t know what they’re looking for.  Many women have “lumpy” breasts (sorry to get so technical).  It’s called fibrocystic disease, which is benign (although I’ve recently learned that a history of it is now considered a risk factor for breast cancer), so even if you were to detect a new lump, your response might be “whatever”. 

Mammograms are far better than self-exams, except they aren’t very good.  Collins notes that having just had a clear mammogram, she then found a lump on her own.  In this case, self-exam worked.  The most sensible thing I heard all week was a quote by someone from the Susan B. Komen Foundation who said that this was at least a good debate, since it sheds light on the fact that mammograms are a poor test.  CT scans are much better, but they cost ten times what a mammogram does.  Now there is the debate we should be having:  about why we aren’t doing the best testing available.  Mammograms are crude, and reading them is subject to varying levels of competence by the radiologist.  Of course, so are CT scans. 

Now we get to the part about cutting me some slack too.  In my own case, the tumor was detected by CT scan–a scan I had for an entirely different reason.  Afterwards, I had a mammogram and an ultrasound, but it’s important to note that the mammogram I had was “diagnostic” as opposed to “screening”.  Screening mammograms, which are of the type women have every year, are very general, and I think of them as tests that something has to jump off the screen for the radiologist to recognize.  Between the screening mammogram and the breast exam by a doctor, you hope you will pick up something, operative word here being hope.  Not guaranteed.  Diagnostic mammograms are a lot more detailed (and a lot less fun).  After the CT scan I had, I had that diagnostic mammogram and that’s what I have every year now.  And the results of that first diagnostic were, yeah, there’s something there…not sure what it is….

I will never know for sure whether a screening mammogram would have picked up the tumor first, before I had the CT.  But I seriously doubt it.  My personal advice is, if you can afford it, have a CT scan.  (You have to do that anyway if you have breast implants, I recently learned!)

Finally, for a bit more factual information.  This op-ed article appeared in today’s NY Times and it’s entitled Addicted to Mammograms.  The author explains rather well the history of breast cancer treatment and recommendations, and really, it would apply to most cancers. 

If you’ve read this blog for any length of time, you know that I have a friend who is dying of breast cancer that metastasized to bone.  In distress, I once asked our (mutual) radiation oncologist, if you know where breast cancer is likely to metastasize, why don’t you test for it?  To make a long answer short, the answer was, “It wouldn’t do any good.”  Our methods of detection are primitive, and methods of treatment are worse.   

But I have to tell you, it positively insults me to the core to have politicians trying to tell me that the government wants to kill me.  It’s almost too ignorant to dignify with a comment.  If you care so much, give some money to the NIH for cancer research.  Oh wait, that’s a government agency (Government bad, Tarzan good.)  Okay then, give it to the American Cancer Society.  But your grandstanding is definitely not working for me.

A Crucial Catch: Breast Cancer and the NFL

I recently did a post on Facebook where I said the Jacksonville Jaguars were my new favorite sports team, because of the breast cancer awareness they promoted during their game on Sunday against the Titans.  I’ve been looking for photos, and still can’t find any, but I did find this:  it isn’t just Jax.  It’s the entire NFL, in partnership with the American Cancer Society.  “A Crucial Catch” is their slogan, highlighting the importance of early detection.  See it here:  Crucial Catch. 

I can hardly say enough good things about the American Cancer Society.  If you want the best information, if you want to donate money that will do some good, they are it.  There are a couple of others, but many of the websites you see are scams. 

October is breast cancer awareness month, and it’s the only time I ever wear my pink ribbon pin.  It’s also almost the only time I ever talk about the issue any more.  Progress, of a sort.  But I make myself remember and think about it, at least during October. 

Personally, here is why the NFL’s involvement made so much of a difference to me:  why I thought it was cool that David Garrard came onto the field in pink tennis shoes.  It was the solidarity.  It was the feeling that people are out there caring.  Twenty years ago, hell ten years ago, you couldn’t even talk about it.  Especially breast cancer…like it was an unmentionable body part.  And cancer was like leprosy.  Don’t touch the person…you might get it.  And even worse, you must have done something bad to get cancer.  Even three years ago, an amazing number of people just quit talking to me.  It’s like they were afraid if they asked how I was doing, I would actually tell them.  They were afraid they wouldn’t know what to say.  I will never, ever get over that.  My friend Judith, who is a much nicer person and is in much worse shape than I am by far, said I should forgive them.  I say, they need to get over themselves and their cowardice. 

So the feeling I had when I heard about the Jax/Titans game was sort of a feeling of relief.  These guys have mothers, and wives, and sisters, and daughters.  It was the feeling that they are behind us, even if their marketing department made them do it, I think they get it.  It’s out in the open now.  About time. 

One in eight women are likely to get breast cancer in their lives.  There are other cancers.  Some people complain that breast cancer gets too much of the attention and too much of the research money.  I say…it wasn’t always that way.  And anything that brings attention to the issue is good.  So wear a pink ribbon this month.  If not for your mother or your sister or your wife or your daughter or your aunt or your niece or your girlfriend or your next door neighbor…do it for me.

I Can’t Get Comfortable

Did you ever hurt yourself in such a way that no matter what position you got into, it didn’t help?  You can’t stand up, you can’t sit down, and you can’t lie down.  It still hurts.  I once did that to myself by trying to move a king-sized bed from one place to another in my then-apartment.  By myself.  What was I thinking?  To answer that question, I was thinking I was invincible. 

That’s how I am today, except it is mental rather than physical.  I can’t sleep, I can’t eat, I can’t watch TV, I can’t read, I can’t think.  I am mentally tossing and turning. 

I’m trying to force myself to go through the Five Stages of Grief in a single day.  So far, it hasn’t worked.  Wish I had started earlier.  I was fairly stuck in the Denial phase.  Which is very sucessful, until reality slams into you like the proverbial freight train. 

I hurt.  And I can’t quit.