Sunday, January 29, 2012

More Than Words

"I'll see you in May," my breast surgeon says.  "It'll be three years then."

He smiles as he says that.

I smile too, at the idea of three years out.  Sounds like a long time, but is it cause for celebration?  Is it significant? Three years without a sign of recurrence.  Does it mean anything or should it be five years to carry some weight?

Or is it never?

Or is it simply, keep moving until you die of something else?  But, as I tend to do when half naked in front of surgeons, I keep questions to myself and let him go out the door satisfied with his assessment of things today, putting a great deal of faith in his words and that smile.

I gather my stuff and head downstairs to my oncologist's office though my appointment isn't until next week.  I like to get blood work out of the way so, if anything questionable arises, we can discuss it during the visit, rather than receive a phone call two days after.

Suddenly, I'm filled with an all too familiar apprehension.  Not two minutes ago, I left my breast surgeon after convincing me my world would keep spinning.  His smile giving me some hope about the future.  I'm thinking with reconstruction finished and my boys in school all day, maybe I can forge ahead with new endeavors.  Get a job of some sort.

I'm optimistic...for exactly the length of time it takes the elevator to carry me one floor.

For up next is the guy who looks beyond the obvious, searching for hidden signs, those invisible, imperceptible.  A tell tale rise in numbers.  The nagging ache of a mysterious new pain.  Time doesn't matter here.  Nothing is guaranteed after three years and despite the influx of positive thoughts, my cells won't be influenced by good wishes.

In the waiting room I am the youngest by far.  No one speaks to me.  No one even looks at me, ever. That's fine.  Everyone is absorbed in their own moment.  Their reality.  Still, every now and then in this room, I'd like someone to acknowledge my existence.  I'm not sure why it matters, but it does.  I'm one of them.

When I walk in the lab, a lady who looks to be in her 70's is sitting in one of the two chairs.  Even here, no patient has ever spoken to me, but she's different.  She teases the nurse that my veins are probably a piece of cake.  But, this nurse knows better.  She's traveled to my land of nonexistent veins before.  She crosses herself and hopes.

The three of us joke about other nurses turning away at the sight of me.  It's possible to have laughter in this room.

I'm drawn to the lady's prominent, ropey veins and wish for a moment I had those, but then I don't.  Her veins, her life.  We are who we are.

I squeeze a ball, as the nurse rubs and taps my hand over and over trying her best to coax the elusive vein. The older lady watches with interest then glances up. There's understanding in her face, a show of sympathy and she smiles.  

I turn away then, at the pinch.  I can't bear to watch the tube fill...or not, if my blood refuses to flow, dreading a second jab.

I think of all the times I've sat in this room or others as a nurse or anesthesiologist relentlessly tries to insert a needle, and how often I was alone.  Someone may have been waiting in an outer room, but never by my side.

And never, ever, a sweet lady, old enough to be my mother.

But what if there was?  Someone who knew cancer up close and personal.  Someone who hated I was here, but smiled anyway and without words, told me everything would be okay.

I was startled by the rush of emotion.  Surprised a sudden connection with a stranger touched on something I apparently needed, something lost when my mother, the older woman in my life, was taken from me.

Though this lady and I had never laid eyes on each other before, we shared a common enemy.  She turned away from her own problems and looked at me like I mattered.  As I would to my mother if she were sitting there.

No doubt I was reading too much into this.

But maybe I just needed to believe if someone who'd lived longer and seen more, could still smile in that room among the needles, things would work out.  How could I not believe that?

My nurse got the vein on her first try and as the vials filled I focused on good numbers in spite of myself.  I figured a little hope couldn't hurt and for the second time that day, I thought about the smile someone cared to give me.

Maybe they know something I don't and sometimes faith can be found in the strangest places.  I just hope it carries over to my next appointment.


Sunday, January 22, 2012

The End of Reconstruction

Today, I'm reminded of what "Goliath" means.   Though, I don't often recognize milestones along my breast cancer road, I think it's right to say, I've got one.

My reconstruction is officially complete.  Finished, done...That lofty, elusive goal, so unattainable for many breast cancer patients and more than two years in the making for me, has actually been achieved.

The notion of putting breast cancer behind us, or being finished with some aspect of it, is hard to grasp, despite what many well- meaning, non-cancer people like to say.

We can't be done.

Our reality is always another blood test, another scan, another appointment and good news that spins in an instant with a new pain, a rising tumor marker, an unidentified shadow.

To be finished with cancer when treatment ends sounds so good in theory, but it's really a carrot dangling in our faces, a gleaming, brass carousel ring taunting us to grab it and we never quite can.

I consider this as I drive to my tattoo follow up and realize there's no need to see my plastic surgeon after today. There's nothing left to reconstruct.  Perhaps, it is possible to finish something.

Memories of my initial consultation come back to me.  Maybe I shouldn't compare then to now, but I can't help it.  For a happy day, I'm not feeling particularly happy. Obviously, I want to be done with reconstruction, yet liking the finished work doesn't seem enough.  I need to measure how far I've come in some other way.  How else can I leave behind something that's literally taken so much blood, sweat and tears?

It has to matter.

These days I go to my appointments alone, but that first, scary day, I drove in a car I no longer have with my husband at my side.  I had chosen my breast surgeon, but my decision of lumpectomy or bilateral mastectomy was yet to be made.  Surgery still to be scheduled. Extent of my invasive ductal carcinoma, unknown.  I remember the moment my plastic surgeon opened the door, seeing him for the first time, thinking he didn't look anything like his website photo, (in a good way).

I couldn't articulate what I wanted from reconstruction.  I couldn't see past the cancer. Discussing what I liked or didn't like about my breasts was unfathomable.  I needed this man, this stranger, to provide all the answers without asking questions and maybe that was unfair of me, but at that moment, answers were hard to come by.

Somehow, I muddled through a bilateral mastectomy with tissue expanders, a summer of fills followed by implant surgery.  I had to learn revisions were part of the process. Though I was thrilled to have the shape of breasts again along with the softness of implants versus the rock hard feel of expanders, something never felt or looked quite right and my surgeon agreed.


It was frustrating feeling dissatisfied with the results.  Everyone else I knew with reconstruction were all smiles.  What was my problem?  I must be too picky, expect too much.  I should just deal with it.  I lived with an uncomfortable implant for nearly a year.  I just couldn't comprehend another surgery.

Who revises their implants?

Turns out, lots of women.  I realize now, there's nothing wrong, or selfish, in getting it right, which, is what my surgeon said, but accepting that was my issue to bear.

Afterward, nipples and tattoos were procedures keeping me up at night.  The idea of being awake for nipple reconstruction so terrified me, my knees shook as my surgeon measured and marked me with his Sharpie that day, but I endured and he told me everything was ok.

It's impossible to say how I'd react had I known my reconstruction (it's different for everyone) would take well over two years.  I don't know.  I may have opted out of the whole thing, so I'm glad I didn't know.  These days, I feel it was worth it.  It's nice being comfortable, believing it looks good and though none of it's real...It has become me.

As I sat waiting, I thought about not seeing my surgeon again.  Strange, thinking someone with whom I'd shared so much would disappear from my life.  His was the first face I saw after waking from the mastectomy.  His voice said my lymph nodes were clear.  I wasn't the best or most communicative patient at times.  Modesty is a hard trait for me to shed and that didn't help, but I think we reached an understanding and in the end, a great achievement.

Searching the faces sitting around me, I saw lots of people with cancer and many with a long road ahead.  Perhaps, longer than mine.  I knew then, I could say thank you and goodbye.  There were new patients to help, important work to be done and I was ready to give up my seat.

I finished something, a big accomplishment, but that hasn't stopped paranoia from coming around reminding me of my upcoming oncology visit and not to get too happy.  But, that's another post.


Reconstruction questions?  Feel free to ask away.

Thursday, January 12, 2012

Funny Pants

Although, I've been posting this photo all over facebook, I had to share here.  Just had to. I smile every time I see it.  This photo, his expression, the ridiculousness of those pants... all of it makes me happy.




The joy in my son's face is what gets me.  He is truly in the moment and loving every second of it.  Fresh and still damp from his shower, nothing else in his world mattered, but laughing at himself in that outfit.

And remarkably, only a few weeks ago, putting on anything that didn't fit perfectly would reduce him to tears.  He'd cry and cry about looking silly or being uncomfortable.  Now, he reveled in it.

When did he grow up?

This boy is my youngest.  The one that keeps me tethered to babyhood.  The one I want to hold on to, just a while longer and a bit harder, as my eldest dashes toward adulthood. When he cries, I hug him.  When he says he can't put his shoes on, I help him.  When he calls me "Mama" instead of barking, "Mom!" I melt just a little and when he wakes in the middle of the night with "bad thoughts" as he often does, I comfort him.

When bad thoughts of cancer, or a reckless driver, or a dog I miss, pierce my night, his smile reminds me there's joy to be had in simple things, such as cozy pajama pants, or snuggling up to read about race cars, airplanes or wimpy kids.  He's proof laughter cannot be snuffed out and all the dreary visions that surface in the dark of night...They don't get to win because pants pulled up to one's armpits is funny.

It just is, and somewhere along the way, my little one learned that.  And he didn't learn it from me.  I'm pretty sure, I'd forgotten the power of humor.  Maybe, that's what happens with age, with experience, with knowing what lays beyond the safety of a childhood home. When understanding the dark cloud doesn't always have a silver lining.

But that's me.  He's different.

I won't diminish his amusement by saying he's only five and hasn't felt the weight of life's bad news, because he has.  It wasn't only my dog that died or my car accident.  He was there.  These losses belong to both of us, yet he can be comforted.  He can laugh.

He can move on.

Maybe, resilience is the essence of youth and as he grows, it gets stronger.

Maybe, some things are just funny.  No hidden meaning, no message.  No need to measure against the seriousness of cancer.  It just is and we should laugh, as my boy did and I do, every time I see that photo.

That's why I'm sharing it!  I hope you'll find it as fun as I do.

Do you have a photo that brings out a smile whenever you see it?


Thursday, January 5, 2012

The Art of Gratitude

What's up with gratitude?

I've just endured the longest pause ever between blog posts because I didn't want my sulking to seem ungrateful.  After all, I'm lucky.  Lucky to be here writing, lucky my family is safe, lucky we have a warm house with food to eat.  Lucky, I can go about my life without chemo treatments.

But just the same, gratitude has been scarce the last few weeks while I've been home healing, physically, from literally getting my insides knocked around and emotionally...from having my insides knocked around.  I was angry about things.  Furious, an irresponsible teenager destroyed my car, causing me and my husband such painful injuries we barely left our house for almost two weeks, and terrified my boys.

Yet, I hear myself say:

"Our holidays were pretty good.  Things could have been worse."

Not very convincing.

It seems I'd reached the end of the gratitude road.  Gone as far as I could without the strength to summon it once more.  Instead of feeling truly happy for good circumstances, I was tired of being grateful for things that... weren't so bad. I was about to wander off the path of accepting the crap life dumps on me time and again, and wallow in the anger of misfortune, but, something kept stopping me.

Turns out, gratitude is clingy.  I couldn't quite shake it off.  Even though I wanted to, though I felt I had a right to.

It's hard to forget this kid put my children's lives in jeopardy.

BUT...

It could have been so much worse.  How can I be angry?  What right do I have to be mad? We are sooo lucky.

Can someone be grateful and pissed off at the same time?

That's the question I can't escape.  To me, it's like two rams butting heads.  The two sides just don't mesh.  It has to be one or the other.

Then something reminds me.  A blog post, an email... There, but for the grace of God...And suddenly gratitude is looking pretty good.

Perhaps, it's something we can accept only when looking beyond ourselves.

I'm not religious -- just awake.  There's so much tragedy in the world, sadness and yes, my family's tale of a head-on collision could have been among those...It's not.  We're all here.

Others are not so fortunate and it could happen to any of us, at any moment.

Today, I read Susan at Toddler Planet expressing thanks for just a few pain-free hours spent with her young children.

Yesterday, I learned Laura at The Cancer Assassin isn't doing well, though she's trying to handle all the blows she's been dealt.  Asking for help doesn't come easily, but she finds herself in that position.  If anyone reading this can help her achieve a better quality of life in Portland, Oregon, please read her story and reach out.

I'm also reminded of my brother's good friend, Guzzo, from college, diagnosed with a brain tumor in the mid 80's and suffering the physical and financial consequences ever since.

Both Laura and Guzzo are near destitute because they got sick, because treatment kills the good cells along with the bad.  Because it's nearly impossible to hold down a job when you can't drive, think straight, see, hear or even stand up.  Insurance, when lucky enough to have it, doesn't provide a free ride and just living on the absolute bare minimum is sometimes out of reach.

If anyone knows of any resources or support services for someone living with long term effects of a brain tumor, specifically in upstate New York, please email me and I'll pass on the information.



So, yeah, my car was totaled.  I got a new one.

My boys and husband are here with me.  Alive and well.

We're fine and yes, overwhelmingly grateful.

I'll take it.


Have you ever experienced conflicting emotions about gratitude?