We All Have Stuff

I’m starting this post without knowing exactly where it’s going.  I would like to rant, but my feelings are too hurt to let anger win out.  I’d like to revel in the kindness of friends, but I can’t right now without questioning my own participation.

Does cancer give us a free pass to be a lousy friend?  Are we allowed to be so absorbed in our cancer crap that it’s acceptable to drop the friendship ball?

I was forced to confront these questions in the dairy aisle of the A&P yesterday morning as I was being told by a former friend that our friendship had become one-sided, that I wasn’t reciprocating.  That I hadn’t even sent her a Christmas card or ever offered to watch her kids, after she was “so there” for me.

“Are you kidding me?”

While it killed me to do it, I reminded her of my situation, you know, the cancer?  The surgeries… THE CANCER.  She informed me that everyone has stuff to deal with.

That stopped me.  Yes, we all have stuff.  That’s very true and by no means would I make light of someone’s troubles.  Believe me, I understand that.

But, does your stuff include being told you have the same disease that killed your mother and aunt?  Does it include having your breasts cut off on the small chance it will increase your odds of seeing your children grow up?  Does it include endless humiliating doctor appointments like expander fill-ups and painful blood draws?  Does it include constant pain from expanders and then a reconstruction surgery that didn’t go quite right, only to be “revised” months later? All while taking care of two small boys, one giant dog and a hard-working husband.

Oh wait, there I go playing that cancer card again.

I need to stop making these excuses to her.  I apologize for not letting her know in advance I was too overwhelmed by everything while trying to make a nice holiday for my kids to send out Christmas cards to ANYBODY.  Nothing personal.  Sorry I didn’t spell out in an email that I needed alone time to figure out how to deal with my life.  I’m sorry I couldn’t babysit your kids, but I could barely manage my own.

I’m sorry you feel it became all about me.  I wish to God it hadn’t.

But, more than that I wish I could stop feeling guilty that on some level, she may be right.  Did I become too selfish?  Did I toss her aside?  Does cancer give us that right?  The right to become a friend that takes without giving back?

I want to believe it does, because although I know everybody has “stuff”… it’s not this stuff and whether you want to hear it or not, cancer is different.  And I need to believe it’s okay to say that.

A true friend would never keep score.  A true friend would never mind if you needed a break from playdates or took too long to respond to an email and a true friend would certainly never sting me with the words, “The surgery had been months ago.”  As if it were a bad haircut… as if it goes away.

It’s been more than 24 hours and I still can’t shake it.  I met and ranted to a real friend over tea this morning and she was as stunned as I was and confirmed I wasn’t a terrible friend.  I liked that she wanted to run into this person in order to knock her down.  Thanks, T.

I’m trying hard to put it behind me.  At first I felt really alone with it, then I remembered something else I have among all my stuff… my Breast Cancer Posse.  The tweets and facebook comments I’ve received have made me smile, laugh and slowly push this ugly scene to the far side of my brain and I thank you all for that and letting me rant.

Now, I ask you, does cancer give us the right to ignore our friends?

Fixing Me

I was a true city girl.  I’d gone to NYU, fell in love with the city and never left. There was so much to love.  I could walk everywhere, eat exotic food any time of day or night.  Always a million things to do.  The hustle.  I loved it all, except for one thing…City men.

I don’t want to generalize here, but I found city men to be hard to please, always looking over their shoulder (my shoulder) for the next best thing, never satisfied, but what’s worse, they couldn’t do anything.  They weren’t handy.

I had a hard time with this.  I grew up in a house where men knew how to fix stuff.  My father and brothers could repair anything, all while looking good in flannel.  Whether it was in the house, out in the yard or on the car.  It didn’t matter.  They could handle it.  They knew how to use tools.

I can’t say for sure, but this environment may have influenced my taste in men. What can I say?  I liked flannel, but men in flannel shirts didn’t gravitate to the big city.  I wasn’t finding what I looking for among the producers and video editors I worked with on a daily basis.  I won’t even mention the creatives…The copywriters, art directors and graphic designers.  Talented?  Maybe, but not a flannel shirt or tool box in the bunch.

My work didn’t mix with any financial Wall Street types or anyone that might have a normal job, so I can’t speak for them, but in my small world of advertising and video post-production, the men couldn’t fix anything.  They could create a lot of problems, but they couldn’t change a tire, build a shelf or hang a picture if their life depended on it, and that mattered to me.

Needless to say, I remained single a long time.

One day I walked into work at my video facility, went straight to the machine room as always, and found unfamiliar blue jean clad legs sticking out from under a tall rack of tape machines. These legs belonged to a freelance video engineer covering for our vacationing regular guy.  This freelancer was wearing a flannel shirt.

He stayed the week and though I thought of him occasionally, it was a couple years before I saw him again.  He came to work for us full time as the chief engineer.  His job was to keep our multi-million dollar facility running.  People went to him with troubles to resolve and he thrived on it.

We became very good friends and after a few years, I married him… Ten years ago today.

In all of suit-wearing Manhattan, I succeeded in finding the love of my life, my best friend.  We built a nice life, started to raise a beautiful family and one day, were told it was breast cancer.  My man who spends his days putting out fires, solving problems, building new things and repairing broken ones…couldn’t fix me.

He had to put his faith and trust in the hands of others and let go, while never leaving my side.  Not easy for such a man, but here are some things he needs to know and never forget:

It’s your presence that carries me.

It’s your wish to see our dreams fulfilled that sustain me.

Your love and ever lasting support drive me.

And in those ways…You heal me.

I am one lucky city girl.

Happy 10 year anniversary to my love.
2011 and beyond.

Who heals you without even knowing it?

One Moment in Time

I had been warned, told to take the Valium.  People would cringe and squeeze their hands as they spoke about it.  It would hurt, they said.  No way around it. Three needles, one at a time, directly in and around the nipple.  The injections of radioactive tracer used in the sentinel node biopsy the morning of the mastectomy.

Sentinel lymph node biopsy is getting a lot press lately as a better alternative to removing all lymph nodes to determine the extent of cancer’s travels into the lymphatic system.  The radioactive dye traces the cells path when leaving the breast.  The sentinel node would be the first stop.  I didn’t realize at the time, this wasn’t standard practice.  I was lucky to have it.  The side effects of removing too many nodes are well documented and breast cancer patients have more than enough on their plate without adding unnecessary lymphedema.

Well worth the momentary pain I was being told about, but I didn’t want to do it.  Who would? The description alone sounded horrendous.  I would do it, of course, but I really didn’t want to undergo the procedure that made grown women teary just from talking about it.  I wondered how it could be worse than the core needle biopsy, but I was told from women in my surgeon’s office it was.  They were trying to be helpful, to prepare me.

As I’ve gotten older, it’s become increasingly clear we often have to do things we don’t want to do and it seems there are varying degrees of enthusiasm, a sliding scale for unpleasant events.

I don’t want to get up out of a warm bed to start my day.  That’s pretty low on the scale of things I don’t want to do.

I don’t ever want to go to the dentist.  That’s a little higher, maybe mid-scale.

Then there are a few things in life that have topped the scale.  Things that have literally stopped me cold, turned my feet to cement and made it nearly impossible to step forward.   Injections of radioactive tracer to the sentinel node is one of those things.  The best advice anyone could give me, was to take the Valium.

I carried with me the thought that life is made up of moments, for better or worse and though this was certainly “worse,” it was still one moment, just the same.  A blink of an eye, a blip on the evolutionary scale. One, single solitary moment in the big scheme of things.  I could endure anything for a moment.  I took the Valium, tried not to focus on the procedure, squeezed the hand of the amazing nurse by my side and thought of the beach I’d rather be on with my husband, as a second nurse began with the needles.

One moment in time, then gone.  The nurses said I handled it well.  Right then I used a phrase I’ve heard often, but never used before or since.  I had gone to a happy place, one without breast cancer.

Hours later, I was in a hospital bed for the first time in my life wondering how the bilateral mastectomy I just had, would change me.  I was taped up pretty well, so I didn’t feel that different.  The pain meds were doing their job and I knew the sentinel node and a couple of its buddies were clean.  I was thankful, but I knew this was not the end.  I hadn’t reached the end of anything, but I couldn’t contemplate that right then.

There was a clock with a calendar built in on the wall across from my bed and though the television was on below it, I only saw the clock.  I couldn’t take my eyes off it.  I watched it click the minutes away until 11:59PM… That changed everything.

At 12:00AM, the date changed to June 23, 2009.  The sentinel node tracer injections and the bilateral mastectomy were yesterday.  Over…in the past. Those things that I had so dreaded, those moments…gone.  I was still here. On the other side of those moments.

What thoughts carry you through the tough moments?

Can We Know Too Much?

The school nurse called about 10 this morning.  That’s never good.  My youngest was in her office complaining of a stomachache and it must be serious… he didn’t want to eat his snack.  Could I come get him?

Yes, I went to get him, brought him home, and placed him on the couch in front of the television with a drink loaded with Miralax.

What I did not do when I got home with him was make a beeline for my computer, enter his symptoms and believe the possible diseases shown there were upon us.  I didn’t click on every link to obscure stomach ailments.  I didn’t press him for more details trying to maneuver his vague descriptions into the symptoms on the screen.  And I didn’t begin to worry scary things were happening.

I could recognize that his stomachache was just that and not the precursor of tragedies to come.

Why Can’t I Do That For Myself?

I’m beginning to believe 24-hour access to Internet intelligence isn’t arming me with weapons needed to fight for myself.  It’s just scaring the crap out of me. Being left alone with unlimited Google is detrimental to my good mental health.

I can’t live everyday thinking the absolute worst about stuff, believing it’s happening to me simply because I saw it on some website.  The benefits of my research no longer outweigh the bad and distressing information is chasing my imagination down a dangerous path.

When I suspect a problem shouldn’t I just wait to hear from a trusty, knowledgeable authority before believing the most dire scenario? One would think, but my cancer diagnosis put a stop to rational behavior. These days my good moments are being overrun by worries that may or may not be true.  

I know I can’t learn enough about breast cancer, but what about basic, everyday complaints, the ones that linger in my mind long before a definitive diagnosis addresses them.  When is information, too much?  Where do you draw the line?

The Cookie

When I was little I didn’t know slice and bake cookies weren’t good for me.  I loved baking those with my mother.  If you could call it baking, turning on the oven was the actual extent of it…But that was enough.  I lived for those cookies.

Crisp on the outside, gooey warm on the inside and that smell… I can conjure it up even now.  To me, this was homemade at its very best.  I didn’t know anything else.

Somewhere along the line, probably after my mother was diagnosed with breast cancer, I began to concern myself with things I put in my body and noticed the ingredients in my beloved refrigerated dough.  Turns out these cookies were not made of flour, sugar, eggs, and vanilla, but words I couldn’t pronounce. These were cookies in name only and I couldn’t knowingly ingest these chemicals anymore.

I tried to replicate the cookie I loved.  I had cookbooks and the Internet at my fingertips, in ways my mother never had.  I’d produce a cookie that would take the place of the banished one.  The exact flavor, the texture, that smell…  I was sure of it.  I had so much guidance now.  I was learning so much.

Years Later

I’m still trying to get it right.  Some turn out okay, but the texture might be off. Sometimes, they’re too big, too hard, too sugary.  Always “too” something.  I rarely use the same recipe twice.  This is exhausting, not to mention, unsatisfying.

Recently, it occurred to me to shelve the cookbooks of famous bakers, turn away from the Internet and backtrack a bit.  I couldn’t go all the way back to slice and bake, but the easy recipe on a package of chocolate chips would get me close.  And it did.  It was slightly sweeter than I’d like, but the aroma that wafts out of the cookie jar is one memories are built on.  My boys love them.

My life these days remind me of those long ago cookies.  Things are fine until I mess with them, until I question them.  Then they’re never the same again and I’ve lost something, whether it’s peace of mind or a damn good cookie.

If only I could return to a time before cancer, when I didn’t have to challenge every little thing, to wonder if it were good or bad, but just enjoy it.  I miss that.

The Male Perspective

It’s easy and understandable to get so wrapped up in a breast cancer diagnosis that you lose sight of those around you, those that love you.  As focus turns inward, it’s sometimes difficult to recognize breast cancer’s reach to family members, especially our male family members. Our sons, brothers and husbands who get the lucky job of standing on the sidelines waiting for updates, judging our reactions or just holding our hands while holding their breath.

In a post written by my first guest blogger, I’m proud to share the memories and perspective of a son who lost his mother to breast cancer and whose sister (me) is also living with the disease that steals so much from so many. To my brother, David.  Thanks so much for writing.  I know it wasn’t easy.

Guest Blogger

Thanks for asking me to guest blog for you. I have written twice, so far, pieces that seemed appropriate for posting as I was writing, but when I look at the conversation you are having with your readers, I see that what I may have thought I had to say on the subject of breast cancer could never be relevant. It’s not even close.

What you say in your blog and what you exchange with the brave ladies who follow you, for whom by the way, my respect and admiration grow with every comment, is so very different from anything I could think of, or feel, or say. The thoughts you are all sharing with each other seem to … matter.  They matter to your lives, to your days, to those moments that you need this support to deal with all of this.  I couldn’t tell you anything that would rise to the level of being even remotely helpful.  I think it’s because the “living with it” is what your blog is really about, and that’s the barrier I can’t cross.

When Mom was fighting breast cancer, I know I didn’t get it. I probably would say I never appreciated the danger she was in, or what she was going through.  I can’t recall if she and I ever spoke about her fears  – or even if she had any. I was older than you, but still young myself as far as being able to deal with serious issues like this. And if I did keep my distance from her, maybe that was the reason.  I do know that I continued to expect her to be that same strong person she always was.

That sounds okay up there as words on a page, but it meant that I never thought for a moment that she needed me to be different.  So I don’t remember being terribly sympathetic. (Sons can be very selfish – and hard on their mothers, and I live with some guilt about that)

When she was first diagnosed it was easier for me to ignore the presence of the disease.  While she long battled I, as you know, finished college, got married, moved away and started a family and a business. With all the focus on my life I can’t tell you I remember thinking much about what Mom was going through.

But now you’re going through it too. Before you started your blog I had this fear that cancer’s second act in our family would find the brother in Act II playing the same role as the son from Act I. Namely, a man who just doesn’t understand what it’s like to live through the disease and was more afraid of it than supportive.

When you were first diagnosed I may have known more about the disease than in Mom’s time, I may have had more facts, but I still didn’t get “living with it”.  Your blog helps me understand what the difference is.  All this thinking about you and Mom and breast cancer and how I behaved as a son, makes clear the things that as a son I didn’t do for Mom, (and yes, I live with guilt about that).

But memories come back a little bit at a time, so there have been a few things that your blog has helped me remember that I may have done right.

The most important thing your blog does is let me in.  I’m in there with you.  With every entry I can tell you that I get it, and I am with you, and hopeful for you, and proud of you.  I see how you are handling it and I am not afraid to be supportive. You have made it easy.  Thank you for that.

I still can‘t tell you a damn thing, though.

So what?- where the son in Act I was afraid, the brother in Act II is more supportive but the role doesn’t come with any speaking lines.

Son … Brother … I hope I don’t have to be in the two remaining roles a man can play. I hope I don’t have to be the husband.  And I pray that breast cancer will be a curable disease before I have to be the father.

Make My Day

Can I just say, “Yaay!!!”

A couple of days ago, I unexpectedly received the following email from a friend.

By the way…I had my annual gyn appt today, and I scheduled my mammo for next year while I was there.  I was waiting for the receptionist to find a spot for me in Dec and I thought of your blog….and heard myself tell her….”set me up for an ultrasound following the mammo, too.”    Thank you.

I had recently written here of this friend and the suspicious results she received after her yearly mammogram.  It drove me to rant about the need for ultrasounds in conjunction with mammograms.  From personal experience, I believe each alone are not enough in detecting early stage breast cancer.

My friend’s unclear results led to a follow up ultrasound which was thankfully, normal, but couldn’t days of worry have been avoided if the ultrasound was included along with the mammo initially?

And what if it were and her mammo looked fine, but the ultrasound detected something suspicious?  As mine did back in 2009?  Where would I be today if that ultrasound weren’t part of my yearly?

Where are the many women in that situation that didn’t have the ultrasound? How long will they walk around before the cancer is discovered?

Yes, I’m breaking things down simplistically, when breast cancer screening is anything but simple.  Many variables determine whether or not an ultrasound can or should be included in a yearly screening.  Insurance coverage being a huge one.  Family history, age, doctor recommendations, cost, just to name a few.

I know too much about breast cancer to say early detection will prevent all advanced breast cancer.  I know that’s not true.  Some women never see it coming and there is no way around that.  A cure needs to be found for them, and the causes of this disease uncovered as the only way to protect future generations from knowing it.

But for now, one woman hearing the early detection message made my day and that’s why I’m sharing her email.  Maybe someone else will get the message, fight for her ultrasound and save her life.  Maybe one woman at a time, we’ll make some progress.

It’s a start.  So, demand the ultrasound, tell me about it and make my day.

Dare you.

Brave or Fearless

Are we brave?
I know many people think we are.  We’re told often enough by people never having dealt with breast cancer, but are we truly brave?  Is it brave to face the fears in the room simply because you’re left without a choice?  
My computer’s dictionary definition of brave as an adjective:
Ready to face and endure danger or pain; showing courage
In spite of the compliment, I never thought of myself as brave.  It seems to me “bravery” comes forward when you can choose to walk away from the challenge, from the scary, from the pain…but don’t.  You choose to meet them head on.
Most breast cancer patients do not have the luxury of choosing.  Surgery and treatment is not the choice.  To live or die is the choice.  We’re just doing what needs to be done.
Perhaps bravery comes later, after completion of surgeries and treatment. When months go by without a doctor’s appointment, a blood test or a scan of some sort.  When new questions invade our brains brought on by too much time to think, too much time for cells to mutate and grow.  Again. 
Next week I’ll face my oncologist for the first time in four months.  It’s been 9 months since he sent me for ct scans and ultrasounds of any kind.  That’s a long time. Time enough for every ache, twinge and cough to convince me bad things are happening.  
Where’s the brave now?
With this heavy on my mind, we recently took our boys to a nearby ski area for group lessons, where I came face to face with two boys I’ll call Brave and Fearless.
Meet Fearless:
“Ride in an open chair 30 feet up in the air?  Awesome!!’

“Ski black diamond with only having skied green twice?  No problem!”  

“How high is that wall of snow?  I’m on it!”

Meet Brave:
He’s the one with feet firmly planted in the snow refusing to go with his instructor.  His little mittened hand reaching around to grab my leg, tears rolling down his cold cheeks.  His body stiff as a snowboard, while begging not to go.
He fought the idea of ski class for 30 minutes.  While trying encouraging words, promises of treats, and finally bribes, I kept questioning how I could have misjudged his readiness.  How could I have been so wrong about him?
Suddenly, as if resigned to his fate, he asked me to walk him to his group.  I told him I would, but then I’d have to leave.  He stood still as I wiped freezing tears off his face and promised to watch.  I didn’t turn back as I walked away, afraid he’d run to me.   He didn’t.  He stayed.  He had made his choice.
I watched him hover close to his instructor for a while, then watched him hang at the back of the line.  That’s the thing about Brave, even when he ventures into the danger zone, he’s always carrying some fear along.  He’ll go eventually, but he can’t enter freely to embrace the challenge.  He’ll take it slow, come what may. 
At some point, he started to enjoy himself.  He was no longer at the back of the line, but leading it down the “bigger” hill.  Brave had conquered fear.
And the other one, Fearless?  Well, his name says it all.  It’s easy for him.  He doesn’t carry the panic, the trepidation, the worry.  He senses the adventure and doesn’t just enter the zone, but barrels right on through expecting success. Good for him.
As for me, I’m not without fear, so I’m rooting for the brave one.  He stepped forward when every bone in his body told him not to.  When thoughts of the unknown terrified him, he went anyway and came out better for it.  
Kind of like us when we choose to visit our doctors and follow through with tests despite the fear that travels along with us.  I’m just hoping to come out better for it.