The Thing About Breast Cancer

Once again, my friend “Casey” has agreed to be the guest blogger on my site.  She’s someone I’ve known for almost 40 years,  since she moved to my home town and we caught a frog together in her backyard in 3rd grade.  (ok… stop laughing… I know I’m not exactly “nature girl”, but I used to be outdoorsy!!).  I saw this friend for lunch this weekend, and she gave me the name “cancer girl”.  At first, it made me wince a bit, but she later explained she meant it not as a moniker of weakness or disease, but rather as a super-hero of sorts, a cartoon character who takes no prisoners and fights every fight with grace, dignity, and in my case, smooth skin and a matching scarf.  Read below and you’ll see why I love this friend.  She pretends to be snotty and sarcastic on the outside, and yet we all know she has a heart of gold.  I’m lucky to call her my friend. 

Perspective.

It’s the time of year when everything is grey. Outside, the dust all over my house, the sky, the ground — almost everywhere you look.

We are in the after Christmas, pre Valentine slump. Once again, I did not get an “Every kiss begins with Kay” Christmas— you know, where the husband hides the ginormous diamond inside an eggplant or something. I am for sure not getting one of those Lexus SUV’s with a big bow on it in my driveway for Valentine’s day either. Yet— I have been thinking about gifts I have received this year. Surely the gift of perspective has landed on me hard.

We all complain about our hair, “it’s grey, it’s stripe-y, it’s falling out”. Watching my friend wear her scarf like a diamond tiara over her little bald head— truly gives one perspective.

Our husbands/partners jobs and careers— all fodder for complaining— until that job is gone. Perspective— busy people worrying about their own families, careers and jobs, using their names, connections and everything in their power to help someone else even make a contact for a job.

Our bodies— no longer a size 8, no longer boobs that are perky — but every doctor appointment that you leave fine, every day your hands and knees and legs move easily gives you perspective on how lucky you are no matter what size or shape you are in.

Friends— we all feel we never see enough of our friends. Commitments, careers, children— all come first— yet what a gift— to even have friends. It doesn’t matter whether you see them once a week or once a year. Perspective is knowing the friends are there, in your heart, in your head— very often, like voices in your head, but always there for you

If you don’t have a Wii, you can probably skip this post.  If you do, you’ll be aware that each player gets set up in the system.  There is a whole elaborate system where you can customize the players (AKA Wii Mii’s) to resemble the people in your home.  My little daughter loves this customization process.  My  husband’s the tall one with the blond crew cut and bright blue eyes.  My teenager looks dramatic with her dark brown eyes.  My 11 year old has made a Wii Mii version of herself with cute red hair and freckles.  Prior to yesterday, my “Mii” was an attractive woman with a corporate bob and stylish glasses.  Yesterday, in the ultimate way of saying, “get with the program, Mom; you don’t have hair and won’t have any until summer”, my daughter re-did my Wii Mii as a bald woman. 

With a stroke of the Wii remote control, I went from being cool calm composed career lady to chemo cancer chick!

I thought this was a sobering moment, until my husband reminded me that she did it with a total light-hearted feel, maybe showing us that she’s dealing with all of this better than we are……………

Who remembers the 80’s?  Remember those quirky little novelty items — chia pets?  You would water them and fake hair/fur would grow.  I recently discovered that chemo has made me the anti chia pet.  Every time I shower, a little more hair falls off my head.  It’s like a magic trick!  The part that’s really odd is that you think you are 100% bald, and yet more hair falls out.  Does it grow in over night just to fall out in the morning?  As though chemo isn’t annoying enough, you need this little mental torture every morning? 

I guess I could look on the bright side … I might finally have something worthy of David Letterman’s “stupid human tricks”. 

When I returned to work after having my second child (the one where I gained 60 lbs while pregnant!), I couldn’t focus on anything other than how thin all the women at work seemed to be.  I’d sit in meetings (with a good 20 lbs left to lose even though my daughter was 4 months old), and I’d be completely unable to focus on anything other than what a miracle of nature it seemed that other women could tuck their shirts in, wear belts, and sit all day without buttons coming undone on their pants. 

Weeks ago, as I nervously anticipated my hair falling out during chemo, I couldn’t turn on the TV without noticing that all the TV news anchors had reverted to big “Breck girl” hair.  The economy was in a free-fall, Israel and Gaza were at war, Obama was about to be sworn in, and all I could do was stare at Erin Burnett’s hair on MSNBC. 

Then suddenly it changed.  I got a super short crew cut to avoid large clumps of hair clogging my drain, and suddenly I didn’t notice Hoda Kotb or Alex Witt or Contessa Brewer.  Now I only noticed Matt Lauer, Al Roker, Paul Schafer, and of course JD on “Scrubs”.  I felt a certain camaraderie with these men who showed up at work every day proudly displaying their balding heads.

But as the crew cut was shedding everywhere, I had my husband give me a buzz cut that was so short I was forced to start wearing scarves.  I’m suddenly watching re-runs of “Rhoda” on YouTube.  I’m looking at all the Kwanza posters admiring the intricate ways these women tie their scarves.  I look for pictures of Marianne on “Gilligan’s Island” to see if her bandana look would suit me well in corporate America 35 years later.  I’m thinking about renting “Fiddler on the Roof” to see if the “babushka” look might work for me. 

My life has become very “of the moment”, I suppose.  I guess this is a warning to everyone … I’ll be staring at your breasts this summer, wondering if they are real or implants…………….

so, there I am … it’s early Tuesday morning and I’m sitting in our kitchen (plastic cape around me like a 3 year old in a barber shop with newspaper on the floor) as my husband is getting ready to shave my head.  I’m trying to quickly finish my first cup of coffee before he starts his handiwork.  (didn’t want the shavings to go IN my coffee cup).  My little daughter is excited for the big event and asks my husband why he isn’t starting already.  He calmly says, “I have to have a cup of coffee first”.  I think nothing of it, but she says, “coffee???  who can think of coffee at a time like this??!!  It then came to me:  coffee has been the common thread in all my experiences along this cancer journey….

·         worst part of first surgery?   no food or COFFEE in the morning prior to surgery.

·         worst part of second surgery?  No food or COFFEE in the morning prior to surgery.

·         worst thing about staying overnight in hospital?  cold bad coffee on your breakfast tray. 

·         worst part of the chemo?  waking up so queasy that I couldn’t even drink my morning COFFEE. 

·         worst part of having chemo at the local hospital?  the coffee is lousy.

·         worst part of having second opinions at Sloan Kettering?  the coffee is lousy. 

·         Biggest concern of having second opinions at Sloan Kettering?  wondering if we get back to Grand Central with enough time to get coffee before boarding the train. 

·         Best part of having surgery?  Friends come to visit and text you on the way asking what they can bring you from Starbuck’s. 

so…… while there are many unknowns as we tackle this strange thing called cancer, it is comforting to know there will always be coffee. 

         so… when I was first diagnosed and while I was preparing for surgery, everywhere I looked, the word “breast” was being used (see prior blogs on this topic).  Now that I’m knee deep into chemo and my hair is falling out, I can’t help but notice that the word “hair” is in virtually every sentence I hear. 

·         As I watch the Giants play, the announcer says, “it’s just a hair before the 2 minute warning”

·         My friend returns from a visit to the orthopedic surgeon and informs me, “it’s just a hairline fracture”

·         The Today Show reporter talks about the hairy situation she was in during her survival skills course

I wonder what expressions I’ll notice this summer that contain the word “implant”?????????

·         Everything right now is temporary.  I came home from the hospital with my “tissue expanders” … which are basically my temporary breasts. 

·         I borrowed temporary bras from my teenage daughter, not knowing what I would look like when the expansion work was done.

·         Post surgery, I  was too uncomfortable to sit at the desk in my office, so I set up a temporary desk at the island in my kitchen

·         I was told my hair would fall out on day 18 of my chemo treatment, so I got a temporary crew cut, which would tide me over until my hair started to fall out in earnest.

·         I have a full set of temporary clothes for work … since I can’t quite convince myself that my tailored suits will go well with baseball caps and scarves

·         I eat my temporary diet of simple carbohydrates, diet ginger ale and toast, since my usual healthy diet doesn’t taste so great with the chemo nausea.

Maybe by the time I get through my temporary life in 2009, we’ll be done with this awful recession and we can ALL go back to our real lives!

You know the drill.  You’re flying NY to Los Angeles.  It’s a whole day.  You prepare as though you’re going to be on the plane for a week.  Lots of snacks.  The world’s largest bottle of Aquafina.  A full season of WEEDS downloaded onto your I-tunes on your laptop.  Enough reading material for a 2-week vacation (is there a name for the disease that I have:  “FEAR OF RUNNING OUT OF READING MATERIALS BEFORE WE LAND IN LA”?)

I recently discovered that having chemo isn’t that much different.  The food, drink, & reading/viewing materials are pretty much the same.  In chemo-land, the gum is there to kill the metal taste in your mouth, not to make your ears pop due to air pressure, but the net effect is the same:  tote bag full of gum.

Your personality comes through the same.  On the flight, I sit on the aisle near the front because I am claustrophobic and I pee a lot (so I need easy access to the ladies room).  In chemo land, I choose my seat carefully, making sure I have full view of the door so I can see who is coming and going (I am a tireless people watcher, even with cancer!).  I also make sure I have a seat with enough leg room and personal space to pacify my little claustrophobic thing. 

On the plane, you tread lightly before engaging the person in the chair next to you in conversation.  After all, you’re going to be there for many hours and maybe that person wants some alone time, and you have all those back issues of “In Style” magazine that you NEED to read.  It’s the same in chemo land; you stare straight ahead at first, trying to tell everyone you’re in a ZEN place where you don’t want to make friends or talk about the weather, but after 2+ hours of sitting right next to someone, you realize it’s a little odd not to at least make a little small talk. 

On a plane, you see the readers, the sleepers, the talkers, the lap-top-ers, the gamers, the knitters, the workers and the pacers.  Same for chemo, except that it’s hard to pace with an IV, so the pacers have been replaced with the multi taskers who write Christmas cards and clean out their purses while the harsh chemicals drip slowly into their bodies. 

I’ve yet to see anyone bring Annie’s pretzels, a COSI salad or a Pizza Hut personal pan pizza into chemo, but when I do, I’ll know that chemo land and American Airlines have officially merged!

Intellectually I know I am having my head shaved in 4 days.  That’s what you do; you have your head shaved right before your hair is going to fall out (which magically occurs on day 18 of the chemo).  I know it will take about 6 months from my last treatment to grow back to anything more than fuzz.  I know I will be a bald woman with hats and scarves on for the better part of 2009.   As a result of this, I intellectually know it does not make sense to highlight my hair this month, get a stylish haircut this week or spend any money on deep conditioning products.  And yet, there are all these things I do out of habit:

·         I go to J. Crew and I buy the cute preppy headbands on the sale table just before the register

·         I go to CVS and can’t resist buying my favorite no frizz hair serums

·         I pass the aisle with the scrunchies/clips in the Walgreen’s and when I see my favorite hard to find barrettes (the only ones that can hold my thick frizzy hair), I throw 2 packages in my cart. 

·         We stay at a hotel and I take the complimentary shower cap and tuck it away in my toiletry case (as though there are going to be any mornings in the next year where my hair looks so darn good that I wouldn’t want to ruin it by washing it????????????)

Maybe after 46 years of having hair, it’s not quite to easy to transition to a chapter in my life NOT having hair …………..