‘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.

Peace comes in miracle moments

 

Pat Gavin & Vanessa
Pat Gavin can “see Sister Sue with her fake (clown) nose on smiling at us and telling me to ‘enjoy that baby!’ ” Easy-to-follow directions with granddaughter Vanessa Ruster.

“Don’t miss the beauty of watching the miracles that are happening around you today.” — Sister Sue Tracy

When Pat Gavin and his family “(our gang of 18)” gathered for a summer get-away at their cottage, Sister Sue Tracy was there, too.

In spirit. In memory. In a legacy of peace.

Diagnosed with stage 4 cancer in his neck and given two months to live 10 years ago, Pat was thinking of Sister Sue as he anticipated a moment he never thought he would see.

“In a few minutes, I will get to hold my youngest granddaughter,” Pat told me on June 29, the one-year anniversary of Sue’s death.

A member of the Dominican Sisters of Grand Rapids who knew too much about cancer from her own 6+ bouts with it, Sister Sue was an oncology chaplain at Spectrum Health. Like Pat, she also was a Gilda’s Club Grand Rapids stalwart and inspiration.

Life after ‘Expiration date’

“Vanessa was born after the expiration date I was given 10 years ago when I was diagnosed with cancer,” Pat continued. 

“My granddaughter and I will look out over the lake and she will be in awe as if she had never seen it before, even though she did last year when she was 1.

“That lake will put my granddaughter at peace even though she has been riding in a car for 12 hours since leaving her home in Virginia.”

Pat recalls that Sister Sue had a way of imparting that same gift.

“Sister Sue had the wonderful way of putting people at ‘peace’ with what was going on. Her calm, not-so-quiet demeanor, made all of us feel OK about our direction in dealing with our disease.

Divine timing

“It didn’t matter if we were people of faith or not. If we were people of faith, it was that much better as everything happens on ‘God’s time’ not ours.

“I will always remember her for this ability to put people at peace.

“ ‘Don’t miss the beauty of watching the miracles that are happening around you today’ she would say.”

Anticipating that moment of peace on the dock with Vanessa, “she will feel Papa holding her and she will know she is OK,” Pat said.

“She will be at peace and so will I.

“When this happens, I will look into the sky and see Sister Sue with her fake (clown) nose on smiling at us and telling me to ‘enjoy that baby!'”

 

Paying it forward on the front lines

“Everything that comes our way in terms of illness, dis-ease or setbacks are, to me, invitations to enter into them wholeheartedly in our own unique ways. There is no exact right or wrong way.” — Sister Sue Tracy

There’s no road map for doing unto others, but we have a guide in the  memory of how others did unto us: Think Sister Sue.

Larry Kozal looks nothing like Sister Sue Tracy, but he sounds a lot like her.

Larry Kozal edited Erika
Larry Kozal

He acts a lot like her, too, when it comes to what he does at Gilda’s Club Grand Rapids — and why.

They met about 15 years ago at a large group meeting at Gilda’s. He was  concluding six months of chemo and radiation therapy for non-Hodgkin lymphoma, and Sister Sue was in between cancer diagnoses.

“In the 10 years of checkups following my therapy, I cannot recall not having seen her when I was in the waiting area at Lemmen-Holton Cancer Pavilion.” An oncology chaplain at Spectrum Health and a cancer veteran herself, “She was always buzzing around.”

Sharing hope by sharing life in the trenches

“I looked at her then as a survivor — it was always good. When you’re still wondering what you can hope for, you’re listening to who people have been around the block a few times.”

She would make no fewer than six trips around that block by the time she died a year ago — June 29, 2016.

Larry jointed Gilda’s the year after it got started in Grand Rapids. Although he’s far enough out of treatment to believe the cancer is permanently in the rearview mirror, he is still in the Leukemia Lymphoma group. Sue attended, too.

Why still go?

“I go there to be nourished…

A unique sanctuary

“When I go there, it’s like walking into a sanctuary, you get to talk to people about things you won’t talk with anyone else about; they get to talk to you without burdening anyone … they’ll understand what you’re talking about … nobody else could understand what you’re going through.

“I love the people I’ve met and gotten to know there – we all are very thankful for our on-going survival …I’ve had to do some advocacy … you still run into people with antiquated areas of chemo because of Uncle So-and-So, radiation burned up Aunt So-and-So … it’s not like that any more.

“There are always 2 or 3 people who are in the process of being treated — I think they get a lot out of the get-togethers.”

Ultimately, Larry said, “You do the best you can.”

A picture is worth a thousand kazoos

Sister Sue Graduation

“Never take life seriously. Nobody gets out alive anyway.” — Sister Sue Tracy

A graduation picture fast-freezes a moment.

Few resonate outside of family … until you consider Sister Sue Tracy was family to worlds beyond the usual definitions.

To Delinda Brock, “Sister Sue’s graduation picture from her last accomplishment of completing chemo, is in my Book Of Life of others who have passed on.”

Graduation photo backstory

As the accidental musical minion who shot that graduation photo, I had to smile, remembering how it happened.

No one was more surprised than I to arrive at Spectrum Health Butterworth Hospital for a visit, only to find Sue prepping for her “graduation” after finishing what she called her “Sweet Sixteen” — her 16th and final in-patient chemo.

Armed with mortar board, gown and a recorded rendition of the traditional graduation march, “Pomp and Circumstance,” she was as excited as a little kid at a birthday party.

The time came  and Sue pressed “play” on the recording.

The silence was deafening, despite repeated attempts to jumpstart the music.

No pomp due to circumstance?

Disappointing her because of a little mechanical malfunction was not an option, and I found myself volunteering to accompany her on a kazoo. I have no idea how it got in her room, but my duty was clear.

One of my fondest memories is of following in Sue’s wake, humming my heart out on that thing, as she sailed grandly down hospital halls, doing the royal wave, and sharing delighted smiles with her “subjects.”

Switching “instruments” once outside, I grabbed my phone and shot the photo just before she stepped into her waiting carriage and was off.

Insider trading lives on

Delinda, a fellow member of Gilda’s Club Grand Rapids, says “I still miss her but will remember her words of wisdom as I continue to work through:”

  • If we keep a positive mind about what we are facing if will make the difficult moments easier to work through;
  • Ask many questions of our providers so we can make the best choices for our treatment plans;
  • Remember that each person’s journey is different;
  • Look for comments that will help you, the survivor as well as family members who helped you along the way;
  • Rest often and treat yourself to the little things in life when you feel your anxiety level on the rise.

Pictures can reflect the essence of a life when mourning a death.

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“Attending her funeral helped me to bring closure to my emotions of her passing on, and I love the pictures they had in the lobby reflecting her inspiration to others.” — Delinda Brock

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.

“I felt if she could do it, so could I”

StuartJonas-Erikaedit
A passionate biker, Stuart Jonas converts a recumbent model to a workout bike in his home in the winter.  “I lost all my sense of balance with the brain tumor, but this allows me to ride again.”

“I was on the street. This guy waved to me, and he came up to me and said, ‘I’m sorry. I thought you were someone else.’ And I said, ‘I am.’ ” — Sister Sue Tracy

Stuart Jonas sits over Anna’s House pancakes, tall, thin, a ready smile on his craggy face despite the pain. It’s better than it’s been in a long time, but controlling it is still a frustrating work in progress.

Brain surgery and radiation for a tumor followed by discovery and treatment for large B-cell non-Hodgkin lymphoma “in the brain and everywhere” killed the cancer but has left lasting collateral damage.

It’s not about that today.IMG_5793

He holds out a small carved figure with outstretched hands.

Sister Sue Tracy gave him the tiny statue during one of her visits as a chaplain at Spectrum Health.

A person in patient’s clothing

A cancer veteran herself, she gave him something even more precious  during his three months of heavy-duty treatment:

With all due respect to great nurses and his doctors, he says, “When you’re in the hospital, you’re a patient. Sister Sue makes us feel like a person.

“However long she was there, I wasn’t in the hospital, I was with a friend. She shared her cancer experience (no fewer than 6 of them when she died June 29, 2016).

“I felt if she could do it, so could I. I thought ‘Here’s someone who gets it.”

The figure is always with him.

“Sister Sue said, ‘if I’m not here, this is a reminder — there is hope.’ Looking at it makes me feel better.

“It’s  sturdy – something that won’t get broken real easily,” he says.

He could have been describing her other gifts: “She represented strength and hope.”

The chaplain becomes the patient

Their positions were reversed some years ago when she was hospitalized for cancer treatment.

“I got a chance to play guitar for her and her friend.” There was singing involved and “I remember her lying in bed smiling. I like to remember her vibrancy.”

Like so many whose inner light she rekindled into something of an eternal flame, he now pays it forward: He volunteers with others who are hospitalized, and he is part of the Leukemia/Lymphoma group at Gilda’s Club Grand Rapids, as was Sister Sue.

“I don’t want to be tired and cranky, and she embraced whatever came instead of fighting it,” he says.