Friday, December 31, 2010

New Year, Clear Hope

The other night about 2am, my hour for scary thoughts, I was attempting to think of my hopes for 2011;  achievements, accomplishments, fun.  I tried looking ahead, but as fog rolling in obscuring a landscape, I could no longer see the year for the good it might bring.  It had gone gray.  I had to put thoughts of happy stuff aside, because of course, cancer can't stay hidden.  It rears it's ugly head and whispers, "Don't forget about me."

It occurred to me then, it's been this way for quite a while.  Years, actually, since I was able to welcome a new year with pure thoughts, not those infected by the long reach of cancer, but joyful, celebratory thoughts having nothing to do with someone's illness.  Loads of people envision their future just that way, everyday.  New jobs, marriages, babies, exciting trips, not overwhelming prayers for good health, pushing all other dreams by the wayside.  All while knowing without that, nothing else matters.  Joy is hard to come by.

Just how far back did I have to go to find a New Year's wish that didn't involve cancer?

Pretty far, I have to say.  This will be the second New Year's Eve I've seen since I was diagnosed in 2009, but really, I started wishing away cancer as long ago as 1983.  The year my mother was diagnosed.  Some years were better than others, but honestly, cancer has hung over my head and my family since then.

Much too long...for anybody.

It was the cumulative effect of all those New Year's Eve wishes that prompted me to sign up for Dr. Susan Love's Avon Army of Women. One great hope I carry for 2011 is that more women will join with me.  Please check out the link below if you haven't already done so.  The Army of Women together with researchers are working to discover the causes of breast cancer, and ultimately, prevention.  No one should have to endure this insidious disease a moment longer and our future generations should never know it.

That's a wish strong enough to shine through any fog.

I want to thank everyone that has taken the time to read this blog.  It means more to me than I can possibly express and that's saying something.  I'll see you next year.

I wish you all a happy, healthy 2011!

Thursday, December 23, 2010

My New Alliance

I've been reading a lot lately on the power of social media.  A phenomenon I find fascinating.  Facebook, Twitter and countless other applications that seem to pop up daily didn't exist in any form when I was growing up or even as a young adult in my 20's and 30's, but I so wish it did.

How I would have loved to text my friends or update my status hourly when I was single and working in the big city.  My friends would have responded in kind, sharing their activities, arranging plans, setting up dates, coming to the rescue.  How fun to be so close to each other, having those I chose to surround myself with just an instant message, a tweet away.

Bad date, stupid boss?  Just type it, send it, and wait.  Friends would flock.  I'm sure of it, because I'm sure of the friends I had, the friendships I'd built.

Fast forward to 2010.  I still have those friends.  Some are parents, some are not.  Some still live in the city.  Some, like me, do not.  None, other than me, were ever diagnosed with breast cancer.

Social media arrived too late.  Just when I could have used it the most, my friends don't get my need. They can't possibly understand breast cancer. They haven't heard those life-changing words, haven't been enveloped by it from that moment on.  Breast cancer became the great divider.  Before, my friends and I were on the same playing field.  Our scope of experiences matched.  We could relate to each other, but no longer.

Sympathetic?  Yeah, but sympathy is not what I'm looking for. Knowledge, awareness, stories of been there, done that, is what I need. My iPhone puts all this power of instantaneous communication in my hand and I've no way to harness it.  Nowhere to go with it, no one to reach, to tweet.  How could I use it to my advantage?

It was becoming clear the power lies in connecting the shared experience, something I didn't quite understand until the shared experience didn't exist.  Until I no longer had a give and take relationship, but a relationship that was one-sided.  My friends couldn't share what they didn't personally know.  Over the past 18 months I had to endure a great deal on my own. To use a term I don't like, I had become a survivor, and to steal a popular phrase, where was my alliance?  I desperately needed one.

Pushy breast cancer thrust me into an unfamiliar environment.  Left me stranded on an island filled with strangers giving me no choice, but to find my way around.  After the initial shock, I started to explore my surroundings, broaden my horizons, and eventually, I stumbled onto social media, an amazing find, which helped to light the way.  It not only revealed blogging as a way out of the solitude, it brought the blogs of other breast cancer thrivers, and from there, it brought the women, not just the bloggers, but the readers.  The others, like me, that I had been seeking all along...My new alliance.

Here were the women I could blog my thoughts to, tweet ideas, ask questions and they would answer. They understood. Social media gave me a community I didn't know existed, one I didn't even know I had been looking for, but so happy I found.

I've discovered the breast cancer blogging world to be an absorbing landscape permeated with smart, articulate women carrying a common denominator.  One, I turn to via social media everyday.  I'm invested now in the blogs I read, the articles that educate and the women who post it all. It's nice knowing I have allies, even though I'll probably never meet these women face-to-face.  It doesn't matter.  It's the experience we share. Social media gives us the power to find each other, to care about each other.

As Christmas and a new year comes upon us, I want to thank those that read this blog for your inspiration and encouragement.  I wish you all a very happy, healthy 2011 filled with all good things.

One last note, if you've been reading this blog and relate to anything I may have said (or not!) and haven't commented, please do.  Even if it's just to say hello.  It's important knowing you're out there.  It matters to me, shows me I'm on the right path and not just spouting off for my own sake, although, there is that.

Happy Holidays!!

Sunday, December 19, 2010

The Long, Long Search

Turns out, choosing a bilateral mastectomy was far from the only choice I'd have to make along cancer's journey.  I was forced to think about many things never given any consideration before, and not just big decisions, such as mastectomy versus lumpectomy and treatment choices, but small, inconsequential things you'd never think would give one pause.  But, that's cancer for you.  It changes everything that was once commonplace, routine, so very much taken for granted.  I found myself surprised at what became an issue, such as, What to do with my pre-mastectomy bras?  Keep or trash?  Would they ever fit again?  Would I want to wear bras that came before?  Here again, was something I hadn't considered, but eventually breast cancer brought to my attention.

It didn't take long to realize, the old bras no longer served their purpose. Size and shape were significantly changed.  New ones were called for.

Earlier in life, before BC, bra shopping wasn't terrible.  As a matter of fact, depending on the situation, I liked it.  It was fun to shop around, try on different styles, some I'd never consider purchasing, some I might...hello pushup.  It's easy when you know your size, but after implant surgery I had no idea what size I was.  Well, that's not exactly true.  I'm 510cc's, but what is that going to buy me in Victoria's Secret?

I wish now I could remember the last time I wore a bra before the mastectomy.  I should have savored the moment more.  I didn't realize then how long it would be before I'd comfortably wear one again, if ever.  I never wore a bra while I had expanders.  Why would anyone?  What's the point?  They're hard as rocks and certainly not bouncing around, so I was basically starting from scratch with my new implants.  I needed to know my size, but how would I learn that?  Try a sample in every size from B through D?  Tried it.  Nothing fit right.  I never thought bra shopping would be such a pain in the ass.

My fear was the bra fitter.  Am I alone in thinking a bra fitting is awkward under the best of circumstances with the best body?  I wasn't ready for that.  I was determined to do this on my own without asking for help.  Help came with a whole slew of questions I didn't want to answer.

I entered stores with the best intentions, every time, but I began to see this as another cancer challenge.  One daring me to dress these boobs I never asked for, as if it were yesterday.  It didn't need to be fancy. It just needed to fit, like the old days, but the bras never did and I'd leave empty handed, bra less.

This went on for months.  Every now and then, I'd try again.  I thought I nailed it when I headed for the large department stores at the mall, where lingerie lives in some corner no sales person dares to tread, but still, bra after bra rejected.  Whatever I was looking for, I wasn't finding it here.  I'd leave again, defeated, sad.

Maybe, I wasn't as strong as I liked to believe.  The thing is, it was hard to face the mirror.  This wasn't like seeing the scars in my own bathroom mirror.  I can accept them there, but in a store trying to do something I did hundreds of times pre-mastectomy, I wanted to achieve the same results, but clearly, that wasn't happening.  It would never happen.  These new breasts, though nice, were different.  It wasn't possible to see a former vision of myself, no matter how hard I wanted to, or how many bras I tried on -- She's gone.

When I finally couldn't stand camisoles a moment longer, I drove 45 minutes to Nordstroms, where I'd heard they specialize in such things -- Us, nutty mastectomy patients, with the hope they'd understand and help me without it being too uncomfortable, and it was okay.  Except for the stripping part.  I tried to weasel out of that even then.

Me:  "I'll just keep this tank on."

Specially trained bra fitter:  "Honey, it's nothing I haven't seen."

So, I stripped, scars, implants, no nipples and all, for yet one more stranger in the long line of unexpected, unwanted, public disrobing that is cancer, but I left happy.  It fit.  It was nice and even though it didn't remind me of days gone by, it looked pretty good.  My search, at least until I need a second bra, is over.

Sunday, December 12, 2010

When Breast Cancer and Motherhood Collide

I've been a bad mommy, a mean, inconsiderate mommy.  It's true.  I've spent the last 18 months fixated on myself while completely ignoring my children.  At times I'd be in the same room with them, and have no idea what they were doing or talking about.  I was too absorbed in my own cancer life and what's more, I wanted to be...There I said it.  It's not that I liked thinking about cancer 24/7, but I needed too.  There was just so much to take in.  All. The. Time.

Making meals for the boys, getting them to school, bathing them, was all difficult enough.  Play with them?  How could I sit on the floor and play games with thoughts of reconstruction, oncologist visits, and my CA 27, 29 number swirling through my head?  Cancer's daily life was so consuming there wasn't any way I could take part in fun or even conjure up the patience needed for something as simple as arts and crafts. Sticky kid fingers and one clogged adult brain do not mesh.

Things collided early one autumn morning as I was waking my youngest for preschool.  I noticed he had something stuck in his hair or so I thought. On closer inspection, I miserably determined it was a tick, and not a tiny tick, a plump one, a fat, happy one that had obviously been there a while making himself right at home and it was not stuck in his hair at all, but embedded in the sweet skin of my four-year's head.  Yuck.

Crap.  What to do?  What to do?  Pulling it out myself was out of the question.  I can endure many things, but this was beyond my mothering capabilities.  This wasn't some old splinter that needed pulling out.  What if I tried with my trusty tweezers and it still stuck?  What if I hurt my boy? How long would all this take?  There were many ways this could play out, none appealing.  What if I couldn't get my son off to school on time or worse, what if the answer was to miss it entirely to fit in a doctor visit?  As skived out as I was about a tick burrowing it's hungry head into my son's head, I wasn't ready to have it mess up my day. This was truly a dilemma.

I was tempted to send him off to school and have it become someone else's problem.  Nice mom thing to do, right?  There was a nurse on staff, after all.  Shouldn't her responsibilities include helping out a mother too preoccupied with her own stuff to get a fat tick off her son's head?  I had a lot on my mind.  I needed the kids out of the house as soon as possible in order to get down to my sulking.  This tiny tick was a huge problem for me.

The morning proceeded as if nothing was wrong, but guilt was weighing heavily on my shoulders.  Cancer and guilt...Not a good day.

I was beginning to accept I couldn't let the tick live on, but I was pissed, so pissed that this little bug invaded my life, interrupted my wallowing.  I wanted to just be left alone and this minuscule, bloodsucking creature was preventing that.  It was forcing me to put cancer on the back burner and get back into motherhood.  I didn't want to go.

I realized then I was at a crossroad.  It wasn't about the bug.  It was about doing right by my children.  I couldn't go on this way. Pretending to be a good mother, seemingly making all the right moves, caring and invested in their lives, but really it was a sham, a house of cards waiting to fall.  I needed to own up, stop faking and stop short changing these little guys. They deserved better.  A full time mother, present in their world, not someone vaguely watching from the sideline, but someone ready to play the game. Cancer wasn't a free ride away from motherhood, at least not for me any longer.

The tick woke me up.  I started to see the truly important things I was missing, the things I was messing up.  It was later that very day, I began searching out other women with breast cancer.  Having others to talk to helped free up the brain space required to let my kids back in along with my job as their mother. Turns out, there's room for all.

By the way, I did make the nurse at school remove the tick, but she used my own tweezers, so I did help after all.

Did you reach a point when your ways of dealing with cancer had to change? What helped? 

Saturday, December 4, 2010

When Comfort gets Lost

Tonight, my son lost his Snowy.  What's a Snowy?   A small stuffed polar bear my brother-in-law gave him when he was about a year old, but it's really so much more.  In the nearly 3.5 half years since, there's rarely been a moment, excluding school, that my son didn't have Snowy by his side.

Snowy is the best possible friend.  He goes everywhere with us and demands nothing.  He's been on every vacation, every long car ride, every doctor visit.  He's been packed in suitcases, duffel bags, and backpacks.  He's been thrown in the air and dragged on the ground.  His once shiny, black eyes are dull and scratched.  He will never again be bright white and the once furry nose is now threadbare from thousands of nose rubs, but none of that matters.  Snowy provides unrequited companionship, comfort and a deep sense of security.

In the early years, Harrison would suck on Snowy's fuzzy snout as he fell asleep, but as he got older that lessened and we noticed he would reach for Snowy and rub his cute, black nose whenever he was upset or angry. It seemed to calm him.  By being there, Snowy soothed away his stresses and made his world right all over again.

To our dismay, at bedtime tonight, no one could find Snowy.  He wasn't anywhere.  We checked all the usual places:  Harrison's kitchen chair, family room couch, pantry, car....No, no, no, no.  Bathroom?  Thankfully, no.  Where was Snowy?  All this searching began to drag on and it was getting late.  I don't know if it was fatigue or a hint of newly grown maturity seeping out, but Harrison agreed to go to bed with a substitute stuffed animal.  A puppy wearing a heart tag that read, "I Love You."  He asked me what those words were and when I told him, he smiled and said he was happy the puppy loved him.  

Right then, all I could do was promise to bring Snowy up the moment I found him.  I couldn't express how proud I felt.  He was being so brave, so willing to solider on without Snowy, his prime source of comfort.  I was amazed he was so ready to sleep without his best friend for the first time ever, but I was worried he'd wake in the middle of the night seeking his security, his proof that he was safe and cozy, and not find it.

I didn't want him reaching in the darkness for Snowy only to find him gone and scared his world had suddenly changed.  

Oh wait, that was me

I knew that feeling, as does anyone diagnosed with cancer, of the dread in the middle of the night, your world tumbling over.  That feeling is hard enough to take at my age.  My little guy shouldn't have to know it.  Of course, I'm equating the power of cancer to the power of a stuffed bear, but to a four-year old, it's just the same and at that moment, it was just the same to me.  I couldn't right my own world, but I was determined to find Snowy...and I finally did, hiding amongst the shoes, buried under a raincoat on the mud porch, probably tossed aside early this morning.  He lay waiting for his boy to find him.

After switching out the stand-in puppy for the best friend, I felt a sense of satisfaction.  I had restored order to my son's world.  I wish it could be as simple for myself.  A furry friend to hold, a nose to rub and all is good again.  Cancer took away my sense of well-being, my belief in things I thought were true and treated it so badly, I don't know if it's possible to restore.  Maybe my destiny is finding that peace in something new, as Harrison tried to with the puppy he believed loved him.  Hopefully, I can.

Is there any one thing that makes you feel better?  Something that restores your spirit and sense of security when feeling lost?  

Thursday, December 2, 2010

Soapbox Revisited

The above video shows how easy and how important it is to become a member of the Love/Avon Army of Women and now is a perfect time to join.  A fascinating new study has just been announced.  Researchers are looking for women recently diagnosed with breast cancer and those without.  The Army of Women's website describes the study this way:

These researchers are comparing differences between the intestinal bacteria of women who were diagnosed with breast cancer within the last 5 years and those who have never had breast cancer. They are also studying the intestinal bacteria of women who have not been diagnosed with breast cancer and have a first-degree relative (mother, daughter, or sister) WITH breast cancer.

Why are they studying intestinal bacteria to learn about breast cancer? Well, as you may know, exposure to estrogen has been shown to increase breast cancer risk. This estrogen and other female hormones are absorbed through the intestinal tract, and for that absorption to occur bacteria must be present in the intestines. The researchers think that these bacteria and the systems they use to metabolize female hormones may hold clues as to why certain women develop breast cancer and others do not.

You must live near the following locations or be willing to travel there to participate.

• the Chicago, Illinois metropolitan area
• Northwest Indiana
• Cedar Falls, Davenport, or Des Moines, Iowa
• Minneapolis or St. Cloud, Minnesota
• Southern California (as far north as Kern County and San Luis Obispo)
• Milwaukee, Kenosha, River Falls, or Wauwatosa, Wisconsin.

If interested, click the link below and check it out.  Together we can learn how to prevent the disease that takes so many loved ones and hopefully stop it from latching onto a new generation.  Thank you!

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 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 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 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?

Thursday, October 28, 2010

The Happiest Place on Earth... Not So Much

Cancer doesn't discriminate.  It doesn't care who you are, how much money you have, whether you have kids, a spouse, parents.  It doesn't care if you're a good person and it certainly doesn't care where you are when it decides to drop in and stay for a while.  Which, if you're home with family or friends or even alone, is probably a good thing. Where else would you be as you deal with surgeries, treatment, drugs, emotions, healing?

However, what about the beginning of this mess? Where were you? I've heard different women talk about getting the call that in a split second altered their lives.  Some were at work. Some were lucky enough to be home.  One woman was driving across a bridge.  More power to her for continuing across.

I was in a car that fateful day. My husband was driving and my then three year old was in his car seat behind me.  It was raining. Actually, it was pouring, coming down in such torrential sheets we could barely see.  As I listened on the phone, I wasn't surprised to hear the words. On some level I knew they were coming.  It was just hard to hear them over the pounding rain and the voice in my head repeating, "Say benign, say benign." When the doctor didn't, I handed the phone to my husband without saying a word and I cried.  I cried the whole way home.  I couldn't stop. Even when my little boy, who had never seen his mommy cry before, kept asking why Mommy was sad.
Now, here's where it gets funny.  My family and I were headed to Disney World the next morning for a trip planned months before. Talk about timing.  What goes through your head when you're told you have cancer?  What's the first thing you want to do? Who do you call? What appointments do you make?  Which commitments do you cancel? How do you process this heartbreaking news?
I know what I wanted to do.  I wanted to curl up on the bed and pretend I didn't hear those words. Pretend they didn't just change my life.  How could so few words, "It's a small cancer," change so much?
Thankfully, my husband took charge when I couldn't and started to make phone calls and ask questions.  Our instincts told us to act fast. 
Get an MRI!   Find a breast surgeon!   Get it out! 
We had to learn cancer doesn't work that way.  It's a process and nothing would change that over the next week.  Doctors said to go on vacation and try to enjoy ourselves.  The cancer would be there when we got back.  Well, they didn't say that part, but I'm pretty sure that's what they meant.
Then we were there, in Disney World.  I somehow finished packing and got two small boys on the plane without falling apart. Because that's what a mother does.  She carries on.  I spent the next seven days sharing one room and every waking moment with my family.  I never had private time to feel sorry for myself or question if I'd get to see my boys grow up. So, I had those thoughts in public, while roaming the Magic Kingdom, taking the boys swimming, riding the monorail, cueing up for Dumbo one more time.  These thoughts took over as I watched all the other families have the time of their lives.  I wondered if they had had such news.  Was I the only one that was sad here? It's cruel, I know, but a part of me hoped not.
Carrying that burden in such a joyful place was almost as hard as hearing the news.  I tried to live in the moment and enjoy the kids' excitement.  I really did, but every happy thought, every smiling face was followed by a million "What if's?" and "What's next?"

We finally went home, two happy boys, two emotionally drained parents and began the business of fighting this thing, because even though I had been in the happiest place on earth, cancer didn't care.  It was still along for the ride.
Where were you when you first heard the news?  How did you deal?

Sunday, October 24, 2010

The Power of Pink

One Million Strong (feat. Susan Sarandon) - Love/Avon Army of Women PSA

I used to pretend that if I didn't talk about breast cancer or acknowledge its existence in any way, then it couldn't hurt me. You know how everyone has a circle of personal space around them?  Well, if I refused to let cancer enter my space whether through reading about it, watching yet another news story or hearing about one other person I knew being diagnosed, then I was protected. It wouldn't break into my personal space; my force field held strong.

Stupid, of course, but when you're scared of something for so very long, that's how you deal.  At least, me, until it broke through and I had to face this enemy head on, boobs first.  The thing is, it's nearly a year and a half since I was diagnosed and the road travelled these days isn't as rough as it was early on and I'm starting to believe in the power of pink. Not in the "Let's raise breast cancer awareness pink."  Although, I won't argue the importance of that here.  No, I'm talking about its personal power when faced head on. 

Pink gives us the strength to accept the challenges we've been given, even when they seem insurmountable. Pink is the freedom to talk with others out loud, in public and not in the back room of a small shop in a strip mall someplace, as it was in my mother's day more than twenty years ago.  Pink has without a doubt, helped raise survival rates, so there are more of us out there to band together. The power of pink takes down the monster and just maybe, makes it a bit less scary.  At the very least, we are no longer alone and as they say, there's strength in numbers.

I can say the words now.  Breast cancer.  I couldn't when talking about my mother or even myself when first diagnosed, as if just saying it would make it worse.  Pink has allowed me to change.  I can read all about it now without being afraid.  In fact, I'm devouring any and all information I can get on how to fight this thing and I don't mean for my own particular treatment, but on a broader scale.  Before, I always wanted to look away, but now, I'm looking right at it and wondering what I can do to help.  

This disease has taken countless women from this world including my mother, my aunt, my brother's mother-in-law and two people my own age I knew since high school and those are just the ones I knew personally who have died.  How many more are living with breast cancer everyday?  I don't want it to win ever again. I'm taking a stand. For myself and for the women I've lost.  I signed on to Dr. Susan Love's Army of Women and I hope you'll consider doing the same.  I'm all for raising awareness and early detection is my mantra, but Dr. Love is working toward prevention, not just a cure. 

Please watch the PSA attached here and visit the Army of Women website.  Imagine a world without breast cancer.  Imagine all the women gone before us. How proud they would be.  It wasn't in vain. Pink will have finally killed the beast.  

Friday, October 22, 2010

Now, A Public Service Announcement

Or, just me stepping onto my soapbox.

Here's the thing to remember:  Early detection saves lives!  I can't stress it enough.  I didn't explain it in my last post, but my mammogram looked absolutely fine that day. It was the ultrasound that showed something.  It was too small to feel and not visible on the mammogram.  In retrospect, a sad day turned out to be my lucky day.  I caught it early.

Please, please, please ask for both a mammogram and ultrasound, especially if you fall into any high risk categories.  This is my message and I'm sticking to it.  Shouting it out loud for all to hear.

OK, that's it. Back to your regularly scheduled life.  Oh, and if you have an early detection story, I'd love to hear it.  They make me happy.

Thursday, October 21, 2010

Five Days

My assumption, these days, is that everyone has a story like this and if you don't, you're lucky.  However, you don't know that yet and most likely you're not reading this. My story begins five days before May 2, 2009. That date practically jumped off the calendar every time I glanced over for the months leading up to it.  If the date box could flash strobe lights, it would have. That's how excited we were about our first family trip to Disney World. I know some don't see the joy there, just huge crowds of hot, sweaty, cranky adults and crying kids, but not us.  My husband and I loved it and to say we were excited, limits how we truly felt.  If I could yell here, I would. We couldn't wait for that day to arrive and our vacation to begin.

Disney World's theme in 2009 was "What Will You Celebrate?" and we had so much.  My 45th birthday, the 2nd anniversary of H's adoption and AC's 5th birthday.  All good things.  What better place to be?

Five days prior to leaving, in the midst of packing and planning, I went for my yearly (since turning 40) mammogram, along with my first ultrasound. My mom had been diagnosed with breast cancer at only 49 and her sister at 50.  I was used to the concern my family history brought me, but I was also used to breezing through the mammo appointments with an all clear. Besides, this year I had other things on my mind.  As any Disney fan knows, trip planning takes over your life.  It becomes an obsession. There's just no other way to be and I had it bad. If the radiologists had done an ultrasound of my brain, I'm sure they would have seen mouse ears, maybe a castle, for that was all I had in there.  It was stuffed with all things Disney. There wasn't any room for thoughts of daily life. However, the ultrasound they did do showed one, so small, so very tiny, yet suspicious cluster of cells in my right breast and in one sharp instant my brain cleared and my heart sank. This could not be happening.

Five days. I had five days to prep for the vacation of a lifetime. Five days to plan our adventures in the Magic Kingdom and Epcot and Hollywood Studios and the Animal Kingdom.  Five days to plan our meals, our snacks, our pool time, our fun.  What would become of our celebrations, my birthday?

Days slowed into hours and 48 hours later I was having a core needle biopsy and 48 hours after that, just 17 hours before flying off to the happiest place on earth, I was told it was cancer. I heard the words I had been running from for 25 years, ever since my mom was first diagnosed when I was 19 years old. It finally caught me. I was sad and scared, of course, but also, bewildered and that's not a word I use often, but that describes it. I didn't know where to turn or who to talk to, and looming right in front of me was a trip with my husband and two small boys. I had to finish packing and catch a plane.

Wednesday, October 20, 2010

Why Goliath?

Goliath is my dog.  One hundred pounds of beautiful, purebred German Shepherd. He's mellow.  He likes to sleep a lot and these days you need to nestle close to his ear if you want him to hear you, but this wasn't always the case.  My husband and I adopted Goliath from the local animal shelter when he was nearly two years old. We were ten years younger, childless and very likely smarter than today. I always had dogs growing up and convinced my husband our very small, very old Victorian house needed a walking furball to shed all over it and besides, it would be fun. My husband had never had a dog before, just childhood dreams of how great it must be... a boy and his dog running in the fields.  Off we went.  When you've never had a dog, it seems fine to immediately gravitate to and fall in love with the biggest dog in the shelter.  "Sure, he has a sweet face, but he's so big," I said.  "Ok." I also said. That may be the moment our quiet life began to change.

We named this giant dog with the sweet face, Goliath.  Just because we liked it, not because he resembled a huge warrior or anything.  Well, maybe just a little.  I couldn't know at the time his name would become to symbolize so much more. From here on out, things that seemed so ordinary, things that should have been ordinary became giant struggles.  Goliath size struggles.  Such as having a big dog, trying to start a family, and later being diagnosed with breast cancer.  All major, life altering things, yet life does go on, every day.  My boys still need breakfast, they have homework, they want a mommy playmate.  The dog needs to go out, or the floor needs cleaning.  There's laundry, cooking, grocery shopping, husband, work, bills to pay... You know what I mean.  The stuff that makes up every day continues, whether you're told you probably can't conceive, whether you just flew home from Russia with the cutest baby EVER, or you're told the small spot is cancerous.  I know I can't possibly be alone in these things and that's what brings me to write here.

I've search the internet for another like me, someone with similar experiences and the guts to share it, hoping for a connection to others that "get it."  When I couldn't find what I was looking for, I thought I'd put it out there myself and see what happens.  I hope you find me and share along with me.  We all have our goliath size struggles, everyday, but at least we're not alone to carry them.