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.)