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”

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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.

 

 

“People do survive this and with humor”

VIPs on ice
Sheila Stenquist and son, Jason, stand at center ice in 2015 for what she calls “a really important moment during my treatment” — one she thought she would never have.

“Enjoy the little things, for one day you may look back and realize they were the big things.” — Sister Sue Tracy

Sheila Stenquist was the mother of four — ages 16, 10, 4 and 3 — when she was diagnosed with breast cancer in 2013.

Having had a mastectomy and chemo, she was 39 when Sister Sue Tracy happened into Sheila’s life in the waiting room at Lemmen-Holton Cancer Pavilion  of Spectrum Health before her first radiation treatment.

“I wasn’t feeling well, it was such a stressful time. She just sat down and we got talking. She shared some of her story and asked if could pray with with me .

The gift of a laugh

“She told me a few jokes, and she just made me feel at ease — I got to laugh before my appointment!”

After radiation, Sheila saw Sister Sue again at a Blue Bird Cancer Retreat.
“I still have her “holey “card” – a card with holes in it. She just had a presence that made everyone feel comfortable.”

Later, Sheila and her oldest son, Jason, plagued with worry and under incredible stress, sat together at another retreat as Sister Sue recounted her bouts with cancer – which would number no fewer than six when she died.

She was in fine form the day Sheila and Jason were in the audience. 

“He sat with me during her speech,” Sheila recalled, and “hearing Sister Sue brought a little comfort to him. It really helped him feel better listening to someone who had gone through it  numerous times.”

“Knowing she had had cancer gave strength and comfort to me and my son. We were in awe, thinking about what she’d been through

The proof stands alone

“It  helped him realize it’s OK – people do survive this and with humor.”

Early in treatment “I was, ‘How can anyone be joking about this?’

“(Now I know) it’s OK:  Instead of dwelling on the issue, the humor helps — any feeling that is normal helps – It’s OK to have good days, and it’s OK to have bad days.”

One of the good days came in 2015 and produced the photo she shares here.

“The hockey team (the Kenowa Hills Knights) raised the money for him to play and this was Senior Night. I never thought I’d be able to make it.”

She’s had 2 other diagnosis since the breast cancer, endometrial and melanoma, and “I’ve had a lot of surgeries.”

Through it all “My kids want to know what’s going on, and they want me to be truthful — so we are.”

I admire them.

Being up front with my kids about cancer was tough for me in the beginning – even though they were adults. We want to protect them — apparently no matter how old they — or we — are.  I soon found that leveling about what’s going on can be a great relief for everyone. We’re too good at making up scary stories if we don’t know.

Surprisingly some of the best things come out of the worst.

Because of her cancer experience, Sheila says, Jason went into biomedical research. Today he is an intern at Van Andel Institute in Grand Rapids.

After lung cancer: 5Ks and counting

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Man on the run

“She treated cancer like a speed bump: You slow down for awhile, do what you have to do, then move on.” — Charlie Vandebyl

Charlie Vandebyl met Sister Sue Tracy the first time he visited Gilda’s Club Grand Rapids after brain surgery.

Diagnosed in 2012 with lung cancer which metastasized into the brain, he underwent brain surgery and radiation, and later, surgery for the lung cancer.

“I walked in (to Gilda’s Club  about 5 o’clock one evening, and first person I met was Sister Sue … I don’t think I even had the staples out of my head.

“ ‘That’s a pretty fancy zipper you’ve got going on up there,’ she says and gives me a big hug.”

No lock on that zipper

He told her she was the second person to tell him that:

He’d stayed at his son’s house after surgery, and the morning after he got there, his 7-year-old grandson wandered into the bathroom.

“I was trying to get cleaned up, I had matted hair with blood on it.
‘He looks at me with the most sincere look on his face and says, ‘Grandpa, did those doctors put in a zipper???’ ”

Sue hooted and told him he needed to get up on stage that evening and tell that story — it would make people laugh.

Drafted on first

“My first foray to Gilda’s, my first meeting with Sister Sue, my first experience with public speaking … I thought it very bold of her, but it turned out it just part of the norm of her.

“It’s such a loss to lose someone like that, but the memories you have of her just pick you up and move you along.

“If someone like that can do all she’s done, the people she’s touched and given hope… “That’s what I look back on and draw from whenever I’m having a bad day.

“Every time I saw her, it was such a blessing to me. Knowing what she’s been through and all the cancers, she just exudes hopes. She has no idea the effect she had on people.”

Present tense even though the Dominican Sister Grand Rapids died a year ago?

“She’s still here with us and she watches us all the time. I know she does.
“I wonder if, when we start to slow down or falter or lose hope, if she might give us one of the kickstarts we need and we don’t even know it.”

He continues to pay the lessons forward regularly as a Gilda’s Club Grand Rapids volunteer, and as an example of possibilities.

“She showed you that you could be living with cancer, not dying with cancer.
I think she treated cancer like a speed bump: You slow down for awhile, do what you have to do, then move on.”

His cancer status now

He is running 5 Ks, does spin class twice a week, lift weights 3 days a week; and swims a mile 3 days a week.

After surgery to remove the entire upper lobe of his right lung, “They told me, ‘There are a lot of things you won’t be able to do because of limited lung capacity.’

“But a therapist told me, ‘if you get into heavy exercise you can hyperextend the middle and lower lobe to take over. ‘

“I still have some breathing issues — especially when I start exercising, but pulmonary function tests show I’m almost average for a person my age not missing any lobes.”

Scratch that age thing: “I don’t use my age: Just say I’m a Level 63.

“ A lot of my life involves forced effort to breathe.

“ Sister Sue would say, ‘Be thankful for every breath’ — and I am.”

Sister Sue Tracy: Hope on Steroids

Sister Sue Tracy and jumpy friend
Sister Sue Tracy, with Kermit-esque pal, received the first Spirit of Gilda’s Award presented by Gilda’s Club Grand Rapids on Nov. 12, 2015.

“If you can find humor in anything, you can survive it.” — Sister Sue

Sister Sue Tracy faced life with cancer as she faced death with it: armed with naked honesty, faith and a fully functioning funny bone.

She carried her favorite secret weapons and she wasn’t afraid to use them until her earthly end — June 29, 2016 — a year ago this week.

An unexpected blast from her ever-present magic squirt gun of humor could blow holes of relief in the tensest situation and make even the most frightened of us relax and even laugh.

I was among the hundreds, maybe thousands, who learned from Sister Sue how to live with cancer — joyously and fully through the bad times and good.

A  perpetual-motion machine with a laugh that hit the ceiling, she was one of us.

Having dealt with cancer no fewer than six times in her life, she “got” what having cancer means.  On one side: the uncertainty, the fear, the masks we and those we love wear to protect each other, the weakness, the physical and mental toll.

On the flip side: the healing power of those who show us how to cope with hope, as she used to say, who share the angst-relieving gift of a laugh.

She used it all to help us get through — in her work at Gilda’s Club Grand Rapids, as a chaplain at Spectrum Health, with anyone who asked.

Cancer Schmantzer Queens

Like the late comedian Gilda Radner, who  founded what would become a national network of Gilda’s Clubs support centers for cancer patients and families, Sister Sue, a Dominican Sister Grand Rapids, was a Cancer Schmantzer Queen: Life, laughter and hope trumped cancer to the end.

As the recipient of the Spirit of Gilda Award from Gilda’s Club Grand Rapids  in 2015,  Sister Sue personified support and advocacy for the organization and its members and by “doing so with the light-heartedness and laughter that embodied our namesake Gilda Radner.”

Sister Sue Graduation

I can still picture Sister Sue in her white mortar board and gown, sailing grandly down hospital halls, doing the royal wave, leaving after finishing what she called her “Sweet Sixteen” — her 16th and final in-patient chemo … me following behind playing “Pomp and Circumstance” on a kazoo. Really.

Paying forward her legacy of hope

Her legacy of hope  lives on in those of us she strengthened and inspired.

This is the first of a week of posts in which fellow Gilda’s Club Grand Rapids members and I will share that legacy along with some of her insight, angst-relieving one-liners, comfort and grace to help others. Paying it forward, if you will.

Bonus points for laughs along the way.