Guest Blog: A few of the things learned thus far

Many weeks back (okay, 2 months ago) Nancy gave me guest author status for this blog.  Off and on since then I’ve jotted notes, talked out loud to myself (more than usual) while driving alone in the car wondering what I could offer.  You all know I have a pair of very tall stiletto heels to fill.  What do I say?  How do I say it?  When I stopped over-thinking things, it came to me.  Write what you know.  So I share with you some of the things I’ve learned walking alongside Nancy’s left breast on her cancer journey.

I first met cancer a long time ago.  Cleaning up the kitchen after dinner last Thursday evening the faces of three people I knew years back tumbled before my eyes.  The middle-aged man on the oncology unit at Hartford Hospital where I was assigned in the summer of 1980; who told me some of the best clean jokes (“stories” he called them) I’ve ever heard.  Chemo was inpatient then.  I saw him every day he was there.  “Hey, I got a zinger of a story for you,” he’d say and I knew that he needed an audience to help him laugh and he needed to laugh to get through the mine field in front of him, even as his hospital stays became longer and longer and…..  The friend, mid-treatment for breast cancer, who took in a soon-to-be homeless 15 year-old with a 6 month-old daughter at my request; the two became part of this family because no disease can get in the way of real caring.  The woman in my church, statuesque, who seemed to see every moment with the wide eyes of a young child and shared her excitement with everyone she knew because dammit she wasn’t yielding the wonder in even a second of her life to this disease.  Who each one of you is for me today is so much more than I could have imagined you’d be when we parted 30-plus years ago.    

There is no cure.  Isn’t one round of cancer too much for any lifetime?  When we got the diagnosis this time I was a jumble of emotions.  I thought this stuff was bombarded and it’s only been four years and she’s training for a half-marathon we’re both going to run in Wisconsin in May and we have a new grandchild coming in June and now you’re saying that the Emperor of All Maladies is roosting again inside the woman who completes me and she’s going to have poisons injected into her body again and surgery after that?  Dammit!  When I’d finished a few long and loud therapeutic screams in the basement at a time no one was home, I realized I really wasn’t surprised.  Nor was I really surprised when we found out the Emperor had a much nastier demeanor this time than last.  Early in the first go-round I came to terms with the fact that cancer’s a sneaky lurking disease.  Surgically remove it.  Flood it with targeted pharmaceutical potions.  Fry it with photon radiation.  But no oncologist ever hands out “cured” cards once treatment ends.  They know the truth.  No cure exists.        

Some of what worked before will work again.  One of my roles was, and is again this time, “designated scribe”.  Four years ago we bought a red notebook and I took down all the information we received at every appointment and treatment.  Although I never wanted to look at it again, the same notebook goes with us again now.  Sometimes important information can be forgotten.  Being the scribe also keeps me from fidgeting, spinning around in chairs, or getting my hand slapped by my wife for playing with the medical equipment.  Comedy aside, it helps me stay grounded.  One’s feet need to be firmly planted when facing a foe with someone you love, even if a brief cold sweat comes on every so often.

I have a peeve.  Being called a “caregiver” rattles me a little.  I’m a husband and my wife’s being treated for cancer, and I do what I do for her because of who she is to me and who I am because of her, which goes worlds beyond anything I can understand or even a label.  Maybe that’s why I feel uncomfortable when others – with true well-meaning kindness – tell me how wonderful I am for doing what I do for her during treatment.  I’m not the one going through this first-hand, though I wish it was me and not her.  I do nothing more than any husband with an ounce of integrity and love would do.  I do far less than many others are doing or have done.  I deserve no accolade.  Instead, give it to those who have truly earned it: The little ones I see at Relay for Life who are wearing the t-shirt that says “Survivor”; their Moms and Dads who hold their hands or push them in their strollers during the survivors’ lap.  (Ken tips his hat in gratitude for allowing him to “peeve” all over the page.)

They share something together that we can’t possibly share with them, no matter how close we are to them.  We’re at Lowe's on a summer Saturday, in the outdoor gardening section, debating how many bags of something or other to buy.  “You don’t mind if I ask”, the silver-haired gentlemen says to Nancy, “but are you in treatment?”  (The hairless head gave her away again.)  “Yes, I am” she replies.  He had chemo many years ago, he tells her.  They chat.  His wife and I look on as if we’re watching two veterans of different yet equally vicious military campaigns reminisce about something we’ve only known second-hand.  And it’s obvious that when she talks with her “cancer lady friends” or with someone she meets for the first time in the oncology waiting room for their second treatment, that there’s a connection that only they have.  Of course not everyone’s cancer is the exact same, even if it’s called by a similar name (breast, lung, colon, etc.).  And even if they might be exactly the same and treated in the very same way, not all of them will respond alike.  Still, there’s a knowing and understanding those with the disease (in treatment now or with no evidence of disease for years) seem to share.  And sometimes it’s there without a spoken word between them.

Never yield…Ever.  Emperors are vengeful.  Cross them, send them retreating, and you could be in for another fight, maybe bigger than the last one.  Meanwhile, they try to control you with fear.  “I’m coming back, and I’m taking everything you have; and when I say everything, I mean it!”  Cancer, this Emperor of All Maladies, is the master of fear.  We crossed him once, he’s back again, and there’s no predicting where things go from here.  But living in fear and trying to control what we ultimately can’t control is surrendering to the emperor way too soon.  Fear robs us of our joy.  Fear blinds us to everything that’s wonderful in this present moment, and the next.  Things like dinner outdoors with friends on a summer night while listening to a band play 80s music, spending time with grandchildren and planning a trip to see a newborn grandchild, having Sunday lunch on the porch of a winery, a weekend in Traverse City with no particular place to go, following Le Toure de France each day (and wanting to go watch it live), basement demolition, gazebo construction, margaritas in said constructed gazebo, one playing “straight-man” to the other’s comedian for countless cashiers and wait-staff, “cancer humor” that would shock others so we keep it to ourselves, Sunday kayaking and racing each other up the river, that first kiss in the morning and the last before sleep covers us in dreams.  Surrender any of those to the emperor?  Hell no!  Never!  Ever!  
  
Special thanks to Siddhartha Muherjee, MD, (author of “The Emperor of All Maladies: A Biography of Cancer”, Scribner Publishing, August 2011) for inspiration; Haylee Westenra, ABBA, Crosby, Stills, and Nash, Linda Ronstadt, and many others for their music while blogging; and my Nancy who probably never thought I’d finally get this done.)

The Price of Free

My last chemo was four weeks ago – four weeks!!  Most days it felt like it would never end, and yet now that it’s over I can look back and say, “It wasn’t that bad.”  In hindsight, it really wasn’t that awful.  Rough days?  Yes.  Painful and unpleasant?  You betcha.  But you do what you have to do – everything you can – to keep this beast from coming back, so in that sense it was wonderful.

We celebrated my final chemo with nothing special in particular – no Boob Fairy, no crazy wigs - none of that.  In the last four years my path has crossed with too many people living with end-stage cancer; they will spend the rest of their lives getting chemo, hoping and praying that this treatment will be the one that gives them respite, perhaps remission for a few weeks or months or maybe even years…  And I’ve come to know too many women for whom chemo failed them, and they are no longer with us.  So while I was glad to be done with this phase of treatment, I didn’t feel a reason to celebrate this time.  When the nurses blew bubbles in my direction as Ken and I left the infusion center for the last time, the moment was anticlimactic and a little scary.  I’d been down this hall before (last time in a glitter-and-pink tutu) and yet here I was again.

In Breastlandia, there are no guarantees.

My hair started growing back a couple of weeks before that final chemo.  Like an angelic halo resting upon my head, the white hair is short and sparse and wispy, yet it catches the breeze and I feel it move softly with the wind.  The next day I got up and ready for work, rushed out the door on the last morning of steroid high, eager to get as much accomplished as possible, knowing that Frickin’ Friday was just around the corner.  About half way to work I reached up to scratch my head, itchy with new-growth hair…

…and realized I’d forgotten to grab a hat.  Or scarf.  Or an ugly wig.

This happy accident is how I decided to stop color-coordinating my wardrobe and head coverings, and simply go topless at work.

It was surprisingly uncomfortable that first day – for me, and I suspect even for a couple of others (though I could simply be projecting my own insecurities on to them).  I mean, it’s been pretty obvious for the last few months that I’ve been having a Bad Hair Day – or rather a No Hair Day – as pretty head coverings became my fashion statement.  I only wore head coverings at the office, nowhere else; the moment I made it to the car my hat or scarf came off and my scalp welcomed the sunshine and cool breeze.  But that lack of head covering, the naked baldness, left me feeling incredibly vulnerable and aware those first few days.  My first meeting was agonizing; the first encounter at the elevator with a group of coworkers was intimidating; the moment I came around the corner to chat with a friend was a little scary.  But I continued onward, and now, four weeks later, I’ve worn a scarf only twice (and that was because it looked freakin’ awesome with my outfit!!)  No one seems to bat an eye anymore, and while I can reaction-watch from behind my giant sunglasses, I don’t bother to know or care what others think.

Except when they feel the need to tell me what they think.  For some reason, my baldness gives some people a boldness to say things they might not otherwise say in polite conversation.  Or, at least, that ain’t how my mama raised me.

You may have noticed I tend to use humor to deflect those hard and painful emotions.  All the feels, and all that stupid stuff.  There are so many simultaneous and conflicting emotions that sometimes I simply don’t know what I’m feeling.  Or I don’t want to admit it, show it, or deal with it.  As time goes on, I find myself more closed off and less inclined to want to talk about (much less think about) what it is I’m feeling.  It’s part of why writing these blog posts has been such a challenge – I’m kinda-sorta over the whole, “Oh, I have cancer…again…” crap.

Because sometimes, the conversations go something like this:

Friendly-but-not-friendy coworker:  “Hey, how are you feeling?” <insert sympathetic sad-faced look here>  “You look…great, really.  Are you still doing chemo…?  No, you’re done?  That’s great!”

Me, trying to be friendly:  “Thanks, yeah, I’m glad to have that behind me.  Onward and forward!”

Her:  “Did you have surgery yet?  My friend had surgery when she had breast cancer – cut off her boobs, both of them!  Are you cutting yours off?”

Me:  *blink-blink*     *crickets*    “Um…well, no not really…  I’m having surgery in a few weeks…” (Wait, why do I feel the need to answer these questions??)

Her:  “You should just cut them off, you know...”

(at this point I’m trying to figure out how to end this conversation in a friendly-but-not-friendy way…and once you’re at the bottom of the well like Desmond on Lost, you’re only going to be rescued by a smoke monster or a golden retriever…)

Instead, I take a deep breath and decide this is an Opportunity for Growth and Learning, so I hear myself gently explaining that a double mastectomy is huge surgery, isn’t always necessary, sometimes it’s a choice…

“But you get a free boob job out of the deal, right?”

And there’s this moment of conflict – my heart is breaking because I’ve paid a pretty frickin’ high and hefty price for this “free boob job”, and my head is screaming to MAKE A JOKE, SAY SOMETHING STUPID AND FUNNY or the tears are going to roll down my face and I’m going to be standing here in the sixth floor kitchenette, bald and vulnerable and exposed and topless on a thousand different levels, and the only thing I can think of to say at that exact, painful moment is,

“Yeah.”

And I walk away.

I can’t be mad at her – I’ve used those exact same words, that same emotion, when describing the need for my mastectomy.  Then, when I finally chose the DIEP procedure, I’d throw in the fact that I’d also be getting a “free tummy tuck” out of the deal, too.

Sounds funny in my head.  Not so funny when I hear it coming from others.  (And yes, those are the words people use in conversations - “cut ‘em off” and “get rid of them” and “they’re trying to kill you!” and “if it were me I’d do it in a heartbeat” and “why would you even think twice about it?” and a multitude of other comments that are both incredibly insensitive and brutally honest).

But I set the tone for these conversations.  I’m responsible for how they go, and for how I respond.  It just surprises me how I can feel so many different things all at once, and I recognize it’s my own personal grief process getting in the way of the words coming out of my mouth.  Much easier to respond, to joke, to set a tone I dislike, than face the very real and very painful emotions that come with this necessary but difficult decision to remove an important and vital part of my body.

Even now, with all I’ve been through over the last four years, I find myself shaking my head in wonder and confusion, still shocked it’s come to this.

On Frickin’ Friday we get the call that surgery is scheduled for July 21st - unilateral mastectomy with immediate DIEP reconstruction.  The DIEP flap procedure – or Deep Inferior Epigastric Perforators surgery – is an autologous tissue transfer.  It uses a flap of abdominal tissue – skin and underlying fat, as well as blood vessels – to fill the empty pocket of skin that will remain after the breast tissue is removed from Lucy.  The oncological surgeon performs the mastectomy, removing the breast tissue through an incision that also removes the left nipple (“the”?  “My”.  For now it’s still “my left nipple,” dammit).

Once the mastectomy is complete, the plastic surgeon moves in and makes an eye-shaped incision across my lower stomach to harvest the necessary tissue.  After removing a small portion of rib, the blood vessels from my abdomen are micro surgically attached to vessels in my chest; this keeps the tissue alive and healthy.
The entire surgical procedure itself is long and complicated – typically 8 hours.  The first couple of days post-surgery will be in the ICU, with a total of five days in hospital.  This allows the surgeon to monitor the breast tissue for signs of rejection, necrosis (tissue death), or infection, and perform immediate surgery if there are any complications.  Additionally, the abdominal scar is large and poses its own challenges.  It is, in essence, an abdominoplasty (or, in layman’s terms, a tummy tuck).

I’m a very visual person and couldn’t really comprehend the size of the abdominal incision until a fellow DIEPer suggested I take the tips of my thumbs and place them on the top of my hip bones – that pointy area that’s pretty much on your sides.  That is the width of the incision.

Kinda feeling like Humpty Dumpty falling off the wall…..

Unlike a “boob job,” breast reconstruction after mastectomy is very rarely a “one and done” procedure.  For me, this is the first of potentially four procedures (possibly more, possibly fewer, depending on complications and choices I make along the way) to complete the reconstruction process.  There will be scar revisions of my breast and stomach; fat grafting and maybe a lift of Ethel for symmetry; a surgically created nipple and areola tattoos.

Here's to hoping my plastic surgeon can put this cracked egg back together again.

Also unlike a “boob job,” recovery from this surgery is a long and complicated process.  After five days in hospital I’ll be released home with drains, a body wrapped in compression garments, a recliner to sleep in for a few weeks, instructions not to stand up straight for at least two weeks, no lifting, heavy moving, twisting, stretching, or reaching, and NO driving.  If all goes well I’ve been told I could be at “75% at 6 weeks,” and my plan is to return to work at eight weeks.  Fingers crossed for no complications like tissue death, incision opening, infection, or whatever else could potentially go wrong.

So yeah, it’s a free, insurance-paid-for boob job, with a tummy tuck and a little lift for Ethel.

I’d give anything to have two natural, saggy boobs and a tummy pooch from childbirth and dating Ben and Jerry, instead of “cutting them off.”

I’d do anything to not have to make this choice, even when the choice was pretty much made for me.

I’d pay anything not to have to pay this price – with my body, my time and energy, my spirit, my future.

Nothing’s ever truly “free.”