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!

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!!

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.

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? 

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?  

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!