‘You only have 1 day and that’s today’

“Today I’m alive, and if I live in fear, and it never comes back, then what kind of a life did I live???” — Judy Johnson

Judy Johnson edited photo
A riot of yellow lifted Judy Johnson out of an emotionally dark moment when she was “looking for something to cheer me up after a rough day.  God’s creation is a great source for that!  The look on my face says it all!” 

Judy Johnson has dealt with two different lung cancers; blood clots which nearly killed her, and a devastating divorce.

She was first diagnosed with lung cancer in 2007; the second time, it was 2011 going into 2012. The good news: the second was not an extension of the first.

She had both upper lobes removed (“1 for each cancer,” she says, and hoots with laughter.”) Both cancers were enclosed in the lobe and removed with it each time. Chemo followed.

The prognosis was not good, and in 2012, doctors told her to get her life in order: Survival would not be a longterm thing.

Now, 10 years after her first diagnosis and having just celebrated the fifth anniversary of the end of her last treatment, Judy is proving them wrong.

“I’ve seen tons of people at Gilda’s still alive who ‘should have’ died 10 years ago… and I’m one of ‘em.

“Lung cancer is not a death sentence any more.”

She has developed inner strength amid the weakness, learned bad stuff happens to everyone, and that each of us can make choices that make the bad stuff better or worse:

“I’ve learned that difficulties are as difficult as I make them out to be.

“If I wanted to be fearful or angry or worried that cancer’s coming back again, I can choose that, but if I choose that, it’s not going to change the outcome of today.

“Today I’m alive, and if I live in fear, and it never comes back, then what kind of a life did I live??? “

The storm before the calm

Not that arriving in that calm place or staying there is easy…

“I spent a lot of time asking God ‘Who am I?’ I was so sad and grieved so deeply.”

She “didn’t want to be sad anymore, but it takes a ton of effort to change our thoughts … you have to figure out what’s going on in yourself.

Judy’s Christian faith is a keystone of her life, and she has translated biblical writings on gratitude into a life practice.

“I actually started keeping a gratitude journal in 2012; I’m on journal #12. It is awesome to go back and read those during those difficult times … even if it’s someone giving me half a smile in the grocery store.

“Negativity and negative thinking drag you down and wear you out.”

Gratitude brings joy and hope.

Cancer can erode the spirit if we let it.

The shocker, to me anyway, is we have the power to choose otherwise.

Judy has seen the gamut of reactions: those with cancer who turn bitter and angry, obsessing about how and why did this happen to me, “and they died bitter and angry.

“I saw others who wanted to deny anything was wrong, but you’ll make yourself nuts if you try to deny.

“Just look at it, be with it, take it for what it is and make your choices…

‘You only have 1 day …’

“One thing that is very key for me: you only have 1 day and that’s today; Yesterday ended last night when i went to sleep and it’s over and done; and tomorrow can’t ever be today.”

“Being in the moment is key to me having joy.”

Also key: a sense of humor, laughter … “seek it out.”

What would she advise others dealing with cancer?

“Draw on the strength of individuals who know and understand what you’re going through,” Judy said. “That can only come from those who’ve either been there, or are going through the same kinds of things you are now.”

“… the BEST place to get this is Gilda’s Club!”

“While we have the gift of life, it seems to me the only tragedy is to allow part of us to die – whether it is our spirit, our creativity or our glorious uniqueness.”
— Gilda Radner

A butterfly garden grows at Art Prize

 

AP 2017 Illustration

“People will come and see that a part of them is there. Patients can feel part of something bigger – instead of just going in for chemo.” — Zahrah Resh

Now I know how a caterpillar feels: I went for a visit with my oncologist and emerged a butterfly.

In Art Prize. Really.

Unexpected defines everything about cancer. This was one of the uppers.

With luck, it will be for some 6,500 of us, but I’m getting ahead of myself.

Having resumed normal breathing after a regular 6-month visit with my oncologist at Cancer and Hematology Centers of Western Michigan in Spectrum Health’s Lemmen-Holton Cancer Pavilion, I stopped at scheduling to set up my next appointment.

The luck of the draw took me to Chris Ackerman. 

butterflies Chris Ackerman
Chris Ackerman and my butterfly.

Scheduling business done, she pushed two green squares of paper toward me, and told me to write a message of hope to another cancer patient on one of them.  She would use the other to fashion a butterfly.

Say what? 

Never one to do as told without the “why,” I went after that first.

My message would be turned into one of hopefully 6,500 butterflies, Chris explained.

A scheduler for two years at CHCWM, Chris was roaming Art Prize, Grand Rapids’s gia-normous  yearly art show, and got to thinking about the patients she saw daily.

Many of us are too sick to make the trek to the almost 200 venues in Art Prize, and Chris said she suddenly thought, “It’s just another grief — something they’re excluded from.”

She resolved to do something about it.

About the same time, Michigan artist and gallery owner Zahrah Resh, a thyroid cancer survivor treated in Grand Rapids, was looking for an Art Prize venue. 

She talked about it with Dr. Steven J. Dupuis, who specializes in hospice and palliative medicine. He introduced her to Chris.

Hope, Heal, Soar takes off

Resh sent a proposal for her Hope, Heal, Soar project to Chris and Dr. Mark Campbell, a member of the Physician Executive Team at CHCWM, and with support and funding from Cancer and Hematology Centers and approval from Spectrum, the project took off, she said.

Come Art Prize 2017,  September 20-October 8, she will convert the Lemmen-Holton Cancer Pavilion’s lobby into a garden filled with 6,500 butterflies of painted and handmade paper personalized by patients, staff, volunteers, families  and friends of CHCWM and Spectrum Health.

There will be butterfly-making stations during Art Prize, and visitors will be able to make memorial butterflies, Chris said.

“I wanted 6,500 butterflies,” Resh told me. “We have at least 2,500 to go.”

The garden will feature “trees” of dried bamboo about 18 feet high in planters and  “flowers” in the form of parasols she found in San Diego. 

The project is very personal for Resh.

“People will come and see that a part of them is there,” she said. “Patients can feel part of something bigger – instead of just going in for chemo.” 

Through this project, cancer patients will be included in Art Prize, Chris said.

Support takes flight

“I hope when they see the butterflies, they will feel and sense the faith and support around them.”

Mine will be somewhere among the flutter bugs. 

Butterflies - Sue Schroder's
Sister Sue Tracy’s message takes wing on my butterfly.

Its message, “Tears are the safety valve of the heart,” came to me originally through Sister Sue Tracy, my late friend, cancer veteran and long-time oncology chaplain at Spectrum Health.

As I waited for my most recent appointment, I half expected to see her flying through the waiting room at CHCWM as usual, leaving smiles and strength in her wake.

Now I’m thinking she was there after all. I just didn’t see her.

The story of Sue1 and Sue2

With gratitude (and apologies) to Dr. Seuss

Sister Sue and me by _TJH9003
Sue1, right, and Sue2 during one of our last visits.  It was a day of smiles and remembering, as is today. Sister Sue died a year ago today, June 29, 2016. Photo: T.J. Hamilton/Sabo PR

“I fully believe that heaven and earth are mysteriously intertwined.” — Sister Sue

The only time I ever got in trouble in church, at a funeral no less, was with Sister Sue Tracy.

For laughing.

Before the service.

No matter, we were scolded by a sober-sides sitting in front of us who thought laughter had no place in church.

Oh, lady, I thought – if you only knew.

A member of the Dominican Sisters of Grand Rapids for more than 50 years, Sue came into my life when I was a newly-diagnosed, numb cancer newbie in 2009.

She had just emerged from her fifth go around with what she called the “little c,” (Christ was the Big C in SueSpeak) when Charley Honey, mutual friend and Grand Rapids Press Religion editor, “thought you two should know each other.” He brought us together over coffee.

Having read his profile of her in The Press, I was wowed before I met her.

Sisters under the skin

We were sisters under the skin: We shared a form of blood cancer known as non-Hodgkin lymphoma, and she said things like, “Tears are the safety valve of the heart,” and  “The only difference between a rut and a grave is the depth.”

Think funny lady Gilda Radner if she’d entered the sisterhood at 19 as Sue did, and was still going strong in her 70s.

Funny, profound and a fellow quote junkie, Sue made it OK to cry, and she made me laugh despite myself.

Turns out being terrified and laughing at the same time is an unnatural act. Who knew?

On a role: Sue1 and Sue2

In true De. Seuss fashion, she became Sue1 and I assumed the position of Sue2.

When I began writing a column called “Living with Cancer” for The Grand Rapids Press and Mlive.com, her angel wings materialized.

Somehow, when I was feeling less than inspired and a deadline loomed, a you-go-girl email would miraculously appear, or she would suddenly call. Did I want to have lunch?  A heaping helping of inspiration was always served on the side.

She became the guardian angel for the column and talked it up so much, I told her I ought to be paying promotional fees.

Sue chose to  embrace life “one blink-swallow-breath-heartbeat at a time,” and I can still hear her advising me to do the same.

Rising up when you’re down

Not that it’s always easy.

In her blog, toodooloosue.com, she writes of times she was “knee-deep in anxiety, preoccupation, fragileness and shaky trust.” A place too many of us recognize.

During one of those times, an email arrived, containing what would lift her up and become one of her favorite quotes:

“When you come to the end of all that is light and all that lies ahead is the darkness of the unknown, faith tells you that one of two things will happen: either you will stand on solid ground or you will be taught how to fly!”

I’ve chosen to focus on my todays, too, since Sept. 16, 2010, after treatment put me into a complete remission.

Still, every now and then I need a reminder.

Mine comes in the form of a worn piece of paper taped to my desk:

“What I do this day is very important because I am trading a day of my life for it.” — Ron Rutkowski

For all those days you spent on me, Sue, this one’s for you.