Monday, November 29, 2010

A Question of Nipples

"When do you want to do nipples?"

The words hang in the air of my plastic surgeon's office.  Echoing endlessly in my ears because no matter how much I think about it, no matter how ready I claim to be about this portion of reconstruction, nothing prepares me for hearing those words in an actual sentence.  A question spoken so casually, as if I was asked what I wanted for lunch... It's not that simple. The question comes at me as if I had an answer.  That's the weird part.  How could any person possibly have an answer to that question? You don't just get used to the idea of new nipples.  

I had to get used to the idea of a bilateral mastectomy and breast reconstruction.  When all my options were weighed, it actually wasn't that difficult, but nipple reconstruction?  I'm shaking my head even now in disbelief, although, disbelief doesn't truly describe what I feel.  I believe it.  I know it's coming, yet I find it impossible to wrap my brain around it. Young girls don't grow up dreaming of new nipples one day.  I doubt that's something anyone does.

***Brothers and/or father may want to stop reading here.

Nipple.  It's a silly word, isn't it?  It's not a word that commands a lot of respect.  I keep picturing a big cartoon baby bottle with a huge rubber nipple stretched over the top.  That's how I see it now, but if I try hard enough, I can remember how mine used to look before cancer took them away.  They were nice.  One of the few body parts I actually liked.  A good shade of pink, not too large, not too small.  Just right.  But, they're gone and I'd rather not think too much about what I've lost.  I'm supposed to look forward and think about what I'm gaining.  After all, I keep hearing how nipple reconstruction is the icing on the cake.  How the hard part is over, the final step has arrived.  I'm about to be "done."

Well, that's what I hear, but here's what I know.  I'm not comfortable with the whole scenario.  I don't like the process, being awake while my surgeon cuts and manipulates skin to create nipples where before there were none. Not to mention the grape-like size I'd have to endure while healing and waiting for the inevitable shrinkage.  I also, don't believe the end result looks that great.  Perhaps somewhere, in some far off distant imaginary world, there's a resemblance to a woman's nipples, but not by much.
  
I'm wavering though because ultimately, breasts should have nipples, right? I have to decide.  I can't remain in this boob limbo forever, where implants are done, but finishing touches are left off...can I?  If I'm uncomfortable with the idea, why get nipples?  Do I move forward or stand still?

Not surprisingly, neither option is a clear winner.  It's not that I don't want to be finished with this mess.  I do.  It's hard to look in the mirror and see all the scarring and if nipple reconstruction with the eventual areola tattooing can make it look a bit better, then I want it, but despite having silicone implants, aka "fake boobs" and accepting them, the nipple thing, seems more fake...faker.  A plastic cherry topping a wedding cake.

I think the real question here is not whether I should do the nipples, but why I can't accept what I have, if I feel this way?  Why the need to reach some man-made stop sign?  So, I can use it as a springboard to the rest of my life?  "Nips and tats done, must be ready to move on."  I should be able to do that regardless.  Apparently, I still have some thinking to do.

Any thoughts on this from those that have done it... or not?

Saturday, November 27, 2010

Giving Thanks

Early Thanksgiving morning I read on Twitter that a young woman had died leaving her husband and two small children.  I didn't know anything about her, but I was curious and followed the link.  Not the cheeriest way to start Thanksgiving day...so what.

She died of some kind of pelvic tumor.  Not breast, or ovarian, or uterine. Not a cancer with a household name, but cancer all the same.  She fought a brave fight, taking on treatments and withstanding surgeries that make me shudder to think about and after several years, she died.  Because that's what happens in life.

I felt so badly for her, for the struggle she endured, for the sadness she must have felt, for her young family.  It didn't matter that I didn't know her.  I felt badly knowing I was lucky.  I was going off to share Thanksgiving with my family and extended family.  A day where everyone at my table walked in on their own, ate without assistance, laughed, raised glasses to welcome a new baby, celebrate an engagement and acknowledge a 20th anniversary.  All that stuff is life, too.

I often wrestle with my own complaints about breast cancer.  My thinking is, how dare I complain?  I'm stage 1, no chemo required.  Yeah, a bilateral mastectomy, 4 drains for 9 days, two reconstruction surgeries...still not quite finished.  A lot of crap, but who cares?  There are Stages 2, 3, and 4 out there.  There are people like that young woman out there.  What about them?

A friend of mine says we can't take on another person's illness.  We can be compassionate.  We can be caring and we can listen, but their journey belongs to them.  We each have our own. We can't take good or bad from columns A and B and total it all up to see who's better or worse.  Life isn't ordered off a menu, no matter how much we'd like it to be.  We can only be thankful for what we have, appreciate what we're given and make the best of it.  I tried to and went on to have a really great Thanksgiving and I hope everyone reading did the same.

Friday, November 19, 2010

Before, Now, and Forever After



Million in the Mirror PSA

The more I think about breast cancer, the more it pisses me off.  It's so sneaky.  Women live in fear of it everyday.  Family history or not; you never know when and if it might hit.  Seems it's forever hovering nearby waiting to make its entrance and if that weren't enough, once it arrives, it's a bitch to get rid of.  It's the guest that can't take a hint.

I hate how it's been around forever and despite billions of research dollars, we still can't prevent it.  I hate how it affects families and not just for taking wives, mothers, daughters, and sisters, but that it has no qualms about striking more than once in the same family.  I hate that just when you think you've seen the last of breast cancer, it lays in wait, pouncing another day.

I've said this in a previous post, but I feel so strongly about ridding the world of this despicable disease that I've joined Dr. Susan Love's Army of Women. I've battled to free my body of breast cancer, I'm more than willing to fight to eradicate it from the planet.  The Army of Women is not about a cure.  It's about stopping breast cancer before it starts.  Dr. Love is hoping to recruit one million women (and men) for various studies around the country in order to discover the cause of breast cancer and from there...prevention.  Think about that for a moment.  Let it sink into your brain and settle in. Sounds really good.  No more breast cancer.  There's a thought we can all live with.


Registering is quick and easy on the website. No donations of money or time required. You'll start to receive emails about various research studies being conducted with details describing who's eligible to participate.  If interested, respond and you'll receive further information, if you're not, don't. It's that simple, yet so important.  Together the Army of Women can make this happen.  Below is a link to the current studies.  You're welcome to read about each one without registering, but please know signing up for information does not require you to join a research project.  It's completely voluntary.


If you'd like to participate in a study and don't match any of the criteria right now, don't worry.  More projects are on the way and you can always help by spreading the word to others. To the women in your life that mean so very much.

As for myself, this is my chance to actively take part in finding the cause, and if we're lucky, prevention.  That's an opportunity too good to pass up. Breast cancer has taken so much from me, from so many.  I've joined to honor the memory of the women I've lost before, for those I know battling breast cancer now and to hopefully prevent it from reaching the next generation, and forever after.

For all of us, please check it out. 

Tuesday, November 16, 2010

A Clear Message

I was diagnosed with Invasive Ductal Carcinoma five days before my 45th birthday, but this wasn't the first time cancer invaded my life.  When I was 19 my mother learned she had breast cancer.  I can't tell you what kind she had.  I don't think she knew.  No one spoke about such things in 1983. There was a lump, you had it taken out via mastectomy, chemo came next...End of cancer story, unless of course, it wasn't.

Six years later and only a few months after discovering her illness, breast cancer took the life of my mother's younger sister and best friend.  My aunt was my mother's sounding board. The one person listening unconditionally to the fear of finding the lump, the disbelief it was cancer, the rigors of chemo. She got all the gory details. How was it possible her own cancer advanced, seemingly without warning?  Weren't there symptoms? Something? Anything, that seemed off?  Maybe, maybe not.  Who can say what she experienced, what her fears may have been and whether or not she could voice them.

Losing her sister to the very disease she had beaten was unbearable for my mother. She felt it was her fault somehow.  Perhaps she hadn't spread the word enough, didn't scream the signs loud enough.  I don't think she ever believed she wasn't responsible for protecting her sister.  A hard thing to live with.

A few years after that my mother had a recurrence and things never really went back to normal.  As they say, we learned to live a new normal.  By this time, I was in my 30's and getting mammograms every two or three years. I now had a family history I wasn't born with, yet conversations with Mom just skimmed her deep rooted concern for me. I'd get the occasional questions dropped into the middle of a phone call,

"Are you taking care of yourself?  Getting checked?"  

Not wanting to venture into unpleasant territory, I would give a quick answer, "Yes, all is fine."  Topic addressed, subject changed.

My mother died in 2000.  The very same week my brother's mother-in-law, whom we all adored, was diagnosed.  Now, there seemed no respite between the women, between the horror stories, the surgeries, the blood tests, the tumor markers.  What was the number this time?  We lived and breathed by those results.  None of us could just be.  A cruel twist of fate was taking an entire generation of women from my family.

At 40, I began yearly mammograms.  How could I not?  I carried these women with me.  I believed they died because they had the bad luck of being born too early.  Before the advances in breast cancer detection, before heightened awareness brought the disease out of the shadows, before some miracle drugs that may have helped stave off the inevitable. Not going would have been disrespectful to their memory, not to mention, unbelievably stupid. I felt I owed them more than that.

Approaching 45, an ultrasound was tossed into my mix for the first time, and there it was, not on the mammogram as you would expect, but that ultrasound -- Newly added to the routine check because of my mother, because of my aunt.  Without that ultrasound, I would have blindly lived another year thinking I was fine, while it grew inside.

In 2009, it had a name all its own, not just Breast Cancer, but Invasive Ductal Carcinoma. Discovered while still under half a centimeter and zero node involvement.  Stage 1.  I was lucky that day.

My women fought their battles in strong silence, but their message carried through loud and clear.  Their legacy wasn't the cancer. It was their journey that educated and enabled me to be diligent with my own screenings.  I can say with certainty, if it were not for them, my cancer would not have been found as early.  That's a fact and that's quite a gift they've left behind.

Friday, November 12, 2010

Mother's Day comes to November

Cancer normally rules my posts, but not today.  Today, I will not talk about how life has changed because of it.  I will not talk about seeing life through cancer's glasses as if life before cancer (BC) didn't matter as much or was somehow easier or I was somehow less aware of the world around me. I won't talk about how cancer taught me to enjoy the small moments. Nope, cancer doesn't get the headline today. It's been shoved harshly aside because today is the anniversary of my oldest son's adoption and I don't need some disease to teach me the importance of that.

Six years ago today, my husband and I stood in front of a judge in northern Russia and became a family of three. It's a day we celebrate every year, just as we do his birthday.  It might even be a bit more special since we weren't there at the time of his birth.  He was born to us six months later.

Recently, I read a blog that questioned the moment a woman knows she's a mother. Is it when a newborn is placed in your arms?  Is it earlier?  What was the signal that switched off self-centered narcissist and switched on caring, loving, nurturer?  That question is clearly meant for myself.  For the blogger, it was the first feeling of a flutter deep within her body.

That got me thinking, wondering how I can answer that question.  I'm a mother, but my babies were adopted.  I didn't have nine months of a life growing inside me.  My body didn't change into a physical reminder that, like it or not, I was about to become a mother. It was completely mental for me.

As with all impending arrivals, there was lots of baby talk. Lots of preparing for he or she in ways all parents do, buying clothes, setting up a room, but there were also ways no biological parent would ever know, such as divulging every personal and financial aspect of your life to strangers...in triplicate.  There were many, many months spent sloshing through agency and government red tape, all for the goal of a baby... the idea of my baby.

Still no flutter.  When did I first feel like a mother?  It certainly wasn't when the judge declared me one, the baby wasn't even in the building, least of all, my arms.

About a month before that court day, my husband and I were standing in a sunny nursery filled with changing tables and square, wooden playpens large enough for several babies.  This was our first introduction to a Russian orphanage. We were surprised and pleased that it was so cheery.  The ladies taking care of the babies, these caregivers, were genuinely invested in their well-being.  They were loving.  Did they feel like surrogate mothers to these little ones that didn't have mothers or was it just a job?  Did they realize their actions would lay the foundation of who these children would be? Not my actions, not yet.

Eventually, our interpreter walked us over to a changing table where a lady was undressing a baby.  We were told he was ours. The sweetest boy I'd ever seen was squirming naked on a changing pad.  He looked good. Ten fingers, ten toes, but was this the baby I had been waiting for?  Hard to say.  I was waiting to feel something, a connection that was not biologically grown.

How is one supposed to feel the second they're given a six month old they've never seen before?  Immediate love? Is it instantaneous for those that have given birth? Is it easier to love when the baby's only moments have been spent with you? When his first six months are not unknown?  Who is this baby and can I love him? A lot of questions.

The caregiver dressed him, picked him up, turned his face to us and handed him over.  As I reached for my son for the very first time, that little face, that baldy-bean, gave me the most beautiful, toothless grin ever given to anyone on the planet in the history of mankind.  I was sure about that and sure of a flutter deep inside.  Here was my baby. It took a journey of more than a year and many thousands of miles to reach him, but he was my baby just the same as any biological mother's.  Here he was to love, a life to care for, nurture and share.  I was a mother in that moment.  Six years ago.  The best day ever.



PS.  In all honesty, the anniversary of that court date was November 10th, but with my kids off from school and my husband home recuperating from knee surgery, this post is a little late. The sentiment remains the same.


Monday, November 8, 2010

80 Years

I’ve been to a lot of funerals in my time.  More than I like to remember, but the one constant I take away is how nice it is seeing familiar faces again.  Faces of long distance relatives and friends I hadn’t seen in ages. Here, we have an opportunity to catch up on all that's new, but just as it gets interesting we’re called to the business at hand, the funeral and we remember why we've gathered in the first place. I can't count the number of times I found myself saying we have to get together for a happy occasion sometime soon. Isn't that what's always said? Yet, never seems to happen.
Funerals and cancer both have a way of making happy occasions a rarity, but both have taught me to take one day at a time...live for the moment...find some joy everyday. All those sunshiny cliches are true. They have to be. Cancer won’t let the happy days last. My great fear is cancer lurking around the next corner, waiting to ruin a new day.  In living this way, I’ve lost sight of time’s big picture. My view of a whole life has shrunk to small, individual moments and it’s hard to believe someone can live 80 years or more.
Remember being a kid thinking your grandparents were ancient, while in reality they were only in their 50’s and 60’s?  They still had decades before them and I naively believed everyone would have that...all those years.  Except it wasn’t to be, my grandmother saw her two daughters die at the early ages of 52 and 65. Two lives deprived of all those years, but affecting so many more.  Children deprived of their mothers, husbands of wives and innocence shattered by life’s unfairness.
However,  I'm relearning it’s not all bad.  Some people actually do make 80 and make it look like a good time, enjoying their hobbies, their friends. My father is doing just that. He turned 80 this past week. Yet, it seems to have snuck up on me, and not because he didn’t mention it.  He spoke of nothing else for months. So how was it I was missing the awesomeness of this achievement?  Not seeing it for what it's worth. Me? The one who looks for joy everyday? 


Possibly, my head was buried so deep in the sand of crap that fills my day, dealing with my own diagnosis and its never ending fallout, while making a halfway decent attempt to raise kids, that somehow I missed this amazing feat.  My small view of life wasn’t letting me pay attention to the big stuff outside my little circle. I was somehow missing the point of all this. 


In honor of his birthday, my father wanted a party.  With little cooperation and much grumbling from children too busy to pitch in, he still wanted it. To me, it seemed like a lot of unnecessary work and as a mother dealing with the cancer thing, I can't take on any more work.  My brain is on overload as it is, but what I had missed is what my father saw, a joyous reason to bring everyone together. He wanted it and was determined to get it. 




When I finally lifted my head up and saw the group he had gathered last Saturday, I realized that maybe he also needed it. I had overlooked the fact that whatever I had lost over the years, he had also lost, but was thriving in spite of it all. 
He threw a party filled with food, drink, and dancing for everyone he loved.  A party where four generations came to celebrate a happy occasion, not a sad one, and it was great. Just as he knew it would be. In his 80 years, through loss and living, he’d learned that much. 


Thanks, Dad.  Happy birthday and here’s to many more.



Thursday, November 4, 2010

The Most Personal of the Impersonal

Exam rooms are almost always a dreary shade of white or pale green. Sometimes, a diploma hangs on a wall, but not often. Usually placed here and there, cardboard displays advertise how you too can be wrinkle free in only a lunch hour.  Mixed in might be pamphlets describing various breast reconstruction options and always American Cancer Society guidelines for early detection.  The room is always freezing and the table paper always crinkly. There isn't an element of warmth to be found or a single sign that I belong here. It screams sterile, clinical, and when the doctor walks in...a stranger walks in.

Unless you've experienced it, you might not realize breast cancer is more than a physical fight. Its sheer nature attacks your emotions. Your sense of self shrinks away as it pushes you out of your comfort zone, forced to endure scrutiny and the hands of strangers.

Yes, they're doctors doing their jobs and I want them to be better at it than anyone working a job anywhere. Having new doctors, these people I've never met before, comes with the territory. I accept it's a necessary part of the equation that makes up my new reality.

Cancer + Many New Doctors = Survival

So, Breast Surgeons, Plastic Surgeons, Oncologists, come on in. Welcome to my life.  I don't know you, but here, feel me up and while you're doing that, tell me something personal about you because aside from the stellar credentials I read off your internet profile, I don't know a damn thing.  Are you married? Kids? Cat person or dog person?  From my vantage point, this probably shouldn't be the info that matters, but it does.  I need this relationship to be a little less impersonal.

What do you know about me? You know my mother and aunt died from this disease and that my biopsy didn't turn out as I had hoped. Do you know I have two little boys?  Do you know my husband and I went to Russia five times to adopt them? Do you even want to know who I am outside this room?

Does any of this matter in the cancer long run? You bet it does. To get better I have to strip bare, mentally and physically, time and time again. I have to let go of inhibitions, modesty and the very body part that defines the line between childhood and adulthood, and to some women, the essence of motherhood.

For me to accept that, I at least need my male doctors to know something other than my family history. I need them to understand this doesn't come easy, on so many levels other than the disease itself.

Cancer's world is filled with strangers, surgeries, high-tech scans, drugs and blood tests. It's an endless stream of follow-up visits back to those very cold rooms. From the outside looking in, it all seems very impersonal...but it's not. Just the opposite. It's personal. So very, very personal.

Monday, November 1, 2010

I've Been Outed

Thinking about cancer takes up a lot of my time.  So does talking about it.  I love to talk about it.  Probably, because it is on my mind so much.  Regular stuff that makes up a normal day doesn’t stand a chance of grabbing brain space. Call it therapeutic, call it cathartic, whatever, talking about it feels right and even laughing about it, because sometimes, it is pretty ridiculous.  Nipple reconstruction?  Seriously??  I can barely type the words much less speak them. It’s just funny.  I could write for days on this glorious topic, and I will, just not now.
The thing is, I can’t talk about it with just anyone.  It has to be the right someone and that’s tricky.  My husband?  He’s very good with this, but he’s sad for me.  I can’t dump on him 24-7.  He deserves to escape it for a while.  Girlfriends??  Maybe, again, to a certain extent.  They can’t relate, don’t know what to say and ultimately, isn’t everyone happier just hearing that you’re doing fine?  Just super. 
In my quest to find people I could talk to, I decided to write this blog, and not tell anyone. Just my lucky husband.  I do know the whole idea of blogging is to share, but it seemed like a good idea at the time.  Who would read it anyway?  I was having trouble finding others on the internet like me, but that’s exactly the population I was trying to reach.  I wanted time to find them.  To discover other cancer bloggers (cloggers), read their words, comment and hopefully one of them might read mine.  I could have linked the blog to my hundred or so Facebook “friends.”  That would have generated some traffic, but they don’t have cancer.  They aren’t the right fit for this. 
There’s something to be said for writing your most personal thoughts and sending them out into an endless void where, seemingly, no one would ever find them.  I found it easy to write intensely personal things and hit publish.  Maybe it’s because I knew so few would find it.  Eventually, I picked up a couple of readers:  Thank you to Nancy, Sarah and Alethea.  
Then a funny thing happened last Friday afternoon.  I blabbed.  I blabbed about this blog to my brother in a moment of boredom and later that night, without notice, he outed me to his 370 Facebook friends.  It was a strange moment for me when I saw the blog link on his page.  I wasn’t mad.  I knew it was time to be open with everyone.  Why have a blog otherwise? Here was my story for all to read.  And many did.  The blog got more views in a couple of hours then it had since I started it.  The power of Facebook.  
I waited for the comments to pour in.  I waited a long time and when they didn’t come, I realized this wasn’t the right crowd for me and that’s okay. They’re not the ones I’m writing for.  I’m writing for myself and those that unfortunately understand what it’s like to live with cancer. Although, I'm happy so many read it and hope it can be passed on.
In the end, even though the blog was outed to several hundred people, it didn’t really matter. It’s still tricky finding the right one to talk to about this stuff.
Who do you turn to when you need to let it all out?  Who’ll listen unconditionally whenever you need them?