Cancer Mom v. Mom

Yesterday night I opened up the old gmail account and saw a new email from HuffPost Live marked “time sensitive.”  Well I opened that pup right up, curious what was going on.  I had pitched myself as a pediatric cancer advocate to them in September, thinking that might be a good time to do a piece on childhood cancer awareness.  I got no response from them.

That’s cool.  I’ve come to embrace that everyone is not a pediatric cancer advocate or as passionate about it as I am.  It makes sense to me and I completely understand that raising awareness is a process.  Ten years ago, pink did not have the same impact or significance it has today — awareness and advocacy take time to develop.  I resolved to try again next year, crafting a more compelling pitch that would be harder to ignore.

Well, it turns out they liked the pitch.  The producer who wrote was very kind and knew it was short notice, but she had the perfect opportunity to feature a HuffPost Live spot aimed at raising awareness about childhood cancer.  I would be paired with a few other pediatric cancer advocates, including HGTV’s The Property Brothers.  Turns out, those guys are really great supporters and advocates themselves.  Yea, Property Brothers!

Boo!

Today is Halloween.  The feature is scheduled for 5:30 PM, Chicago time. That is PRIME trick-or-treat time.

I said no.

My childhood cancer advocacy has become very important to me, albeit unexpected.  After Donna died, I was pretty resolute that I was done with cancer.  It had taken by Mom and daughter, two amazing Donnas, and I didn’t want to willingly give it any more of my life.  Mary Tyler Dad and I agreed on this point.  Well, things change.

A little time passed and the immediate sting of Donna’s death had lessened a sliver.  After a couple of years, I found myself more and more engaged with the gross disparity between funding of research for pediatric and adult cancers.  The evidence is so damning, that it is hard not to want to contribute what I can and actively use my social media voice to do so.  With last year’s publishing of Donna’s Cancer Story, I had the childhood cancer bug.  I was and remain committed to raising $ to fund better and more research so that fewer families will know the pain we live with daily.

And despite this passion and commitment, it was easy for me to say NO to HuffPost Live.  Today is Halloween.  My boy has been looking forward to this day for weeks.  Months really.  At 5:30 PM, I know just where I want to be and it is at his side, holding his hand, walking from door to door, begging neighbors for candy.

One of my children is alive.  Another is dead.  I parent them both.  Sometimes, the needs of the child who is alive trump the needs of my child who is not.  Harsh as that is, it is my truth.  The further I get into advocacy, the more time and attention it takes, the greater the need for me to balance these needs, which are at times opposing one another.

One potential solution that makes sense to me when I feel pulled, with obligations to advocacy v. obligations to Mary Tyler Son that very well might overlap one another, I think I need to choose life.  In the ring of cancer v. life, I think it will be important to always choose life.  Today is the perfect example.  Spend a few hours prepping for a 20 minute appearance with other childhood cancer advocates and worried about my hair and lipstick, or spend that time prepping and anticipating and participating in tricks and treats.  I choose Halloween.  I choose holding Mary Tyler Son’s hand.  I choose living over cancer.

I think Donna understands.  At least, I hope she does.

 

A Walk in the Woods: Finding the Teachable Moment

It was a beautiful day in Chicago — warm, bright, white blooming clouds in a brilliant blue sky.  I had seen the forecast, so promised Mary Tyler Son a morning at the local nature center.  Gratefully, the weather man was right, so off we went.

Woods 1

A perfect picture, right?  Yeah, a bit too perfect.  It all started out well enough.  We began our adventure in the actual nature center of the nature center.  A window box honey comb with very active bees, animal skulls of every stripe, pelts galore.  The kid was stoked.  So was I.  We started on the Savannah Trail.

Within two minutes, the boy was ready to turn around and go back to the nature center.  I couldn’t quite figure out why, but he was easily convinced to keep walking.  A few minutes later, bored with the finding and picking up of leaves, he asked again to turn around and get back to the “nature house.”

This continued for a while, Mary Tyler Son asking to turn around and me cajoling to move forward.  Finally I asked what was so special about the nature house when we were right here in nature?  “The puppets!,” he said.  Oy.  Some ratty old puppets of animals and insects.  I remember we never let Donna touch the things as they had been handled by a thousand other kids.  For Mary Tyler Son, germs are not an issue, but the plan involved being outside, not inside.

At least, I thought that was the plan.  Mary Tyler Son’s plan involved pouting.  Lots and lots of pouting, worsening when I told him we were going to stay outside, not inside, and that the whole point of our walk was TO BE IN NATURE, dammit.  Harumph!  Ugh.  I had taken the bait.

Woods 3

You never win in a power struggle with a three year old.  They are faster, have more stamina, and lack reasoning ability.  It’s a rookie mistake to engage in the first place, but engage I had.  Never take a three year old’s bait.

Before I knew what was happening, I was walking twenty feet ahead, Mary Tyler Son was lagging behind, stomping in his fireman boots.  “Fine, I said, we’ll just go home.  If you don’t want to walk, we can go home,” and I meant it, walking even faster to prove my point.  So there we were, out in nature, both stewing and pouting in our own way, for our own reasons.

Then we came out of the woods, both literally and figuratively.  The sun shone brighter upon us, there were a few ponds and bridges to cross, the grass grew tall as Mary Tyler Son and tickled his face as he walked past.  We collectively decided to take the longer trail back to the nature center, as it had more bridges.  The bridges are windy and have no sides to them, making them feel a little dangerous/exciting to a three year old boy.

Woods 4

We both held our faces up, basking in that glorious autumn sun.  Our pouting was over.  We walked together, hand in hand, except when I asked him to walk ahead to “lead” us, which is mommy code for I want to take your picture.  There were hills and trees and that endless blue sky above.  Mary Tyler Son spied a hawk.

As we got in view of the nature center, almost having come full circle, I asked my boy to sit down and talk.  I am a talker and when I tell my boy, “we need to talk,” he knows that there is a lesson to learn.  It is our thing.  It works.

I told him what I had learned in our time in the woods — that if we are more focused on what comes next, like puppets in the nature center, that we are missing what is all around us, right now, right here.  “Look around,” I told him, “what do you see?”  Tall trees and puffy clouds and hills and furry plants that reminded him of his stuffed animals at home and a plane that looked like a rocket ship and purple flowers and weeping willows and blue, blue sky and “so much more, Mama!”  We agreed it was all very fine.  And worth paying attention to and enjoying.

Woods 2

We all need that lesson, don’t we?  We rush around always trying to get to what comes next without paying attention to what is now.  Sometimes, now sucks and rushing through it feels justified, but sometimes now is remarkable and when we rush we miss it.  I was as guilty of this as Mary Tyler Son.  In those early moments of the walk, I was thinking ahead to what I thought was inevitable — a tantrum, our lovely day ruined, me wanting to teach the boy a lesson.  Harumph, indeed.

My parenting lesson for the day was to own being the parent.  I am able to set the tone.  I do not have to react to the flighty whims of a three year old.  When I do react to the flighty whims of a three year old, we both lose.  Mary Tyler Son is going to test — that is his job.  My job is to try and not feel testy.  Or tested.  Today, I got an A+.  Tomorrow might be different, but proving my point, I’m just going to enjoy today.

Breast Cancer Awareness: A Wife, A Husband, A Camera

About a year ago a friend posted a link to a Facebook page called, “My Wife’s Fight With Breast Cancer.”  I was intrigued, clicked on the link, and then was transported into the most beautiful love affair.  Angelo Merendino was using his camera to document his wife’s breast cancer treatment.  He was doing with photos what I was doing with words — raising awareness to educate others about The Beast and how it impacts the lives of those who have moved to Cancerville.

Jen shaving

(All photos courtesy of Angelo Merendino at My Wife’s Fight With Breast Cancer)

I felt an immediate kinship.

The love between Angelo and Jen is palpable, practically leaping off the screen.  It is real and intense and beautiful.  I felt both honored and voyeuristic when looking at the images, and I couldn’t stop.  Jen is beautiful.  Even now, ten months after her death from breast cancer at age 40, it is hard to imagine that the warm light in her eyes no longer shines.  The beauty of photography is that it captures so much nuance.  Angelo’s lens has made cancer real for thousands and thousands.

Jen, too, had a blog that I read.  Her writing was spare and direct, her words were honest and powerful.  The images, though, are what fleshed Jen out for me.  Caught in intimate poses — painting toenails on a windowsill and applying mascara in the bathroom mirror and being stared at by strangers as she used a walker on the streets of Manhattan.  Jen was your sister, your friend, your aunt, your neighbor, your daughter, your wife.

Jen

Another thing I responded to was that Jen and Angelo were fearless with what they showed to the camera.  The camera was not put away when things got tough.  The photos show us that despite Jen’s beauty, cancer is not pretty.  Chemo changes how we look, just as the cancer does.  Eyes hollow, cheeks swell, limbs lose strength, and hair falls out.  It is what happens.

And Angelo has not gone away.  He continues to point his camera and make a difference.  We see his grief from the back of a limosine trailing a hearse, we see the gravestone that marks Jen’s resting place.  This, too, is cancer.  Sometimes, that sad reality gets lost in the pink of October, and rhetoric about “winning the battle” and “beating the odds,” as if those folks who have died, the Jens and the Donnas, somehow lost or were bested or gave up.

Jen Two

Angelo’s documentary of Jen’s cancer has received wide acclaim.  Next month, they will show in a gallery in Perugia, Italy.  They have been featured on CNN, USA Today, The Guardian, and The Cleveland Plain Dealer.  People respond to them because they are so strikingly honest.  And hopeful.

Angelo has created an Indiegogo campaign to fund both a traveling exhibition of the photos and an accompanying book.  He is trying to raise $71,500 to make this a reality.  He is asking for our help.

October is rampant with pink.  It is everywhere, from NFL players to kitchen mixers to garbage trucks.  We are given opportunities to buy pink socks and pink bowls and pink t-shirts and pink mugs to “support the cause.” Awareness has been raised, there is no question about that.  The more relevant question, I think, is what are we aware of now?

Both

Angelo’s camera and photographs are a greater testament to awareness than any product you can buy.  By helping to support his campaign, you are helping to make a person with cancer feel less alone, grieve more easily, express their fears and worries and joys in the midst of cancer.  These are all such valuable things.

I encourage you to take a look at his work that will take you into the inner sanctum of cancer and love and life.  If it moves you, as it has me, offer a few dollars if you have them so that others can learn and feel less alone. If you don’t have them, please share this post on your social media feeds.  Tell others that they can support breast cancer awareness without promoting consumerism.

Angelo is my neighbor in Cancerville.  Now I also call him friend.  We get to meet next month and trade war stories over drinks.  This both excites and humbles me.  I will be helping my friend and neighbor.  I hope you will, too.

Jen on beach

RIP, Jen.  Angelo will meet you there.