Tag Archives: ovarian cancer

Ten years on: and then some

I am chagrined to realize that the last post I wrote in this blog was a year ago. On that front, I can simply state that my energies went into completing a book now published. It is titled Honest-To-Goodness: Why Christianity Needs A Reality Check and How to Make It Happen. If you want to keep up with that project and how it relates to the world we live in today, you can find me on TikTok as @genesisfix.

Today, on this blog, I have a testimonial to write. It has been ten full years on March 26, 2013, since my late wife Linda Cudworth passed away after eight years of ovarian cancer survivorship. She’s the reason I wrote the book The Right Kind of Pride, A Chronicle of Character, Caregiving and Community. The book talks positively about vulnerability, the aspect of character enabling people to be honest about their circumstances and trusting that other people will understand.

The actual definition of vulnerability is somewhat harsher than my description above. Vulnerability: the quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally.

Perhaps that’s why people shy away from the idea of being vulnerable at all. Fearing attack for showing their true selves, they feel safer keeping their distance or even letting a sign of supposed weakness show at all.

We purchased her a bike to ride when neuropathy made it hard for her to do the daily walks she loved.

For us, I can testify that showing weakness turned out to be a sign of strength. We were blessed by the support of so many people that at times the help almost overflowed. That’s not bragging. That’s an expression of gratitude. Without the help of others through years of cancer treatments, chemotherapy, surgeries, medical challenges + emergencies, emotional breakdowns, loss of work, financial stress, and finally, a move into palliative care and hospice, those eight years would have been hard to endure. My brothers helped. Our friends helped. Even strangers helped. In some cases those people became friends. In others, they were practical angels when needed most. All were appreciated.

We made it through to enjoy periods of remission where things sort of felt normal. She got to attend school plays and concerts, see her kids graduate from high school and watch one of them graduate from college. She only missed seeing her daughter “walk” during college graduation by a few months.

So this isn’t a complaint or a “woe is us” moment. This tenth anniversary of her passing is a statement of respect and love. She lived as fully as anyone that I ever met. In fact, her example resonates to this day with all that knew her. I still get messages from people whose gardens still blossom with the plants she divided and gave them over the years. I also meet the parents of the former preschool students that she taught. They recall her kindness and loving nature with fond hearts and gratitude. Those were her two loves outside God and family. Her garden and her “kids” were always close to her heart.

The watering of her lilies and garden in late June.

She loved so many things that I used to kid her that I was glad to be ranked in her “Top Ten” any given week. She’d laugh a bit because we kidded each other often. But Linda was also known to have a biting sense of humor on many occasions. Despite her sweetness, there was a sharp intellect and cutting sense of humor inside her. She used it mostly with those she loved the most, creating inside jokes that made potentially dull moments more interesting. She’d also tease our kids sometimes, but mostly she found ways to praise them.

Our children Evan and Emily Cudworth posing for a Christmas photo with a Red Ryder BB gun famous from A Christmas Story.

She looked for ways to bring unity to many situations. During a family reunion up north in Minnesota, she wryly nicknamed the handsome young (often shirtless) dock attendant Mr. Boat. That was his job, fetching fishing boats moored away from shore, and whenever one of us wanted to go fishing she’d chirp, “Better call Mr. Boat!” Her powers of observation were that way about many things in life. She chose her favorite shows based on a high standard captured in the phrase, “This is interesting,” which was not given out to just any old show. Usually, that meant the show was either refined or educational. She also loved historical dramas such as Upstairs, Downstairs the series Downton Abbey, and nature shows narrated by Richard Attenborough.

And yet, she loved the silly stuff too, as with shows such as 30 Rock, where an episode could send her into fits of giggles if the absurdity caught up with her.

Nothing captured her imagination quite like gardening, however. She’d pore through catalogs seeking the best new plants, especially specimens few other gardens had. A walk through a typical garden center with her elicited winces and looks askance at the colorful yet commonplace pansies or petunias. Her garden pots as a result were works of genuine, living art. And once during my participation in an Artists In Action event in downtown Geneva, Illinois, her dried plant arrangements outsold my artwork by a far margin. I didn’t hear the end of that for quite sometime.

During one of our fall travels to the Morton Arboretum. A small portion of her ashes were discreetly placed in the Daffodil Garden.

I loved her for all these reasons. Yet I also knew that once the cancer diagnosis hit, it would be tough for her to live it out beyond a certain number of years. Had I not chased her to the gynecologist that spring of 2013, she might not have lived even a year beyond whenever it showed up at last. But getting checked out saved her life in many respects. It took aggressive surgery and chemo treatments to knock back cancer, but she/we did it time and again. She was tough as nails so many times. Even her doctor, a highly respected gynecological oncologist with many years of practice told her, “I don’t think I could do what you’re doing.”

A formal portrait from our church. We moved to a more open-minded congregation during the last year of her life.

That was her will to live at work. Obviously, I was her closest admirer, but there were many whose involvement in our lives proved vital to her survival. But by early March of 2013, when the medical oncologist saw that she could not rise from the examination table on her own, I was pulled aside to learn that it was time to prepare for the end. That’s when I really knew. It was time to say goodbye.

In truth, and I don’t say this with shame, I’d been preparing myself for many years before she passed. This is called anticipatory grief. It takes place when you see parts of someone you love being taken away. People dealing with situations in which loved ones or friends aresuffering from diseases such as dementia or Parkinson’s know the process too well. Bearing witness to the disappearance of that person you knew is painful. Indeed, my freshman-year roommate and running teammate Keith from Luther College was diagnosed with Parkinson’s not long after losing his wife Kristi to ovarian cancer. He dealt with its effects for more than a decade, including slowed speech and movement limitations. Yet he kept his wry sense of humor. Yet what a strange thing to have to happen in life. Those two 18-year-old kids that roomed together as cross-country teammates at Luther College could never know that both of our wives would battle the same disease.

My roommate Keith leading our team. I’m at left in the second group.

Keith and his wife Kristi had been together since they were high schoolers. She and my late wife had quiet conversations about their respective cancer journeys whenever we were all together at college reunions or other events. Recently, one of his daughters sent me a Luther College Bear made from some of his tee shirts. We keep each other company in spirit.

I wrote a poem about the anticipatory grief experienced in preparing for Linda’s passing. That’s the only way I could put all the thoughts together. I’ll place that poem here for your consideration. Perhaps you’re experiencing a change in your life that brings grief about in some way. I hope you know that you’re not alone. And if you feel moved to do so, you can share your experience at chris@christophercudworth.com. I’ve communicated with many people over these years. Sometimes it helps a bit to share.

Anticipatory Grief

At four o’clock a.m., she woke me from sleep

and shook a sheet of paper calling out, “I found the car!”

She’d been up for an hour researching new Subarus

on the Internet and that fact alone was shocking

because she despised almost everything

about technology and how it seemingly ruled our lives.

Our car is still rolling ten years later.

She dug into the website of Gerald Subaru to look through the selection of Outbacks and found the bronzy brown color she desired and printed out the sale sheet with all the stats so that we could go that day and buy the car.

Already we’d experienced the side effects of steroids

from the cancer that passed through the blood-brain

barrier even though it is never supposed to do that.

On December 26 we met with the neurologist

who explained the procedure he proposed

in fine detail, with the clamp on the head

for excision and radiation followed by

a prescription of steroids to stop the swelling.

Her personality grew my increments as the drugs

did their job, reducing inhibitions dramatically

as she spent money we did not have and looked up

cars that we probably should not buy

because I was taking time out of work

to care for her needs.

Like mother, like daughter.

Fortunately, my credit rating was so high up on the charts

that the car dealership didn’t ask too many questions

and we drove the new vehicle off the lot

with that strange sense of hope enhanced

by that new car smell.

She would get to ride in that car just three more times

as the steroids wore off and her body slowed down

unable to keep up with the rolling effects of ascites

and everything else that goes with ovarian cancer.

It had been years since her first diagnosis

in late spring when my mother also learned

that she was fighting a different kind of cancer

and my father was tied down with the effects

of a life-changing stroke.

Upon hearing these bits of news, a longtime coach

and friend called on the phone with encouragement

saying, “Your whole life has been a preparation for this.”

All that run training, patience, and perseverance learned in athletics

was called upon in caregiving for years to come.

There were late nights sitting in hospitals waiting

for surgeries to finish, and days spent perched

on partly comfortable chairs waiting for her body

to recover with some sign of digestive activity

usually indicated by a loud fart of some sort

at which the nurses often cheered.

We found humor where we could and between

repeated rounds of chemotherapy there were periods

of remission in which she could return to gardening

her primary love in life along with God and family.

Son Evan with Linda and Chuck, our dog.

My job was supporting these efforts no matter which direction

they tended to move, and without the help of so many

there were times when I might have frozen in place

lacking hope where there should be some despite all the worries.

The prayers piled up as high as they could go

and people even laid hands on her in a religious attempt

at ridding her body of disease, but she hated it,

the ceremony I mean, because it felt to her

like testing God, or what we knew of such things.

Her main goal was to be free of cancer somehow

and did not like being the center of so much attention

or the need to get so sick that life itself felt like a cruel prank

in the face of nausea, neuropathy, and skin peeling

from her hands as she was gardening.

Linda in her parent’s backyard on the 4th of July, one of her favorite holiday. But she loved them all.

Eventually, her hair was all gone and never came back

while the veins in her arms were so tired from injections

that the nurses had to warm and slap the skin

just to find an entry point for the medicine

or whatever one might try to call the poison

that cancer treatment so often requires.

The wigs she chose evolved from modest

to a bit wilder as she said “Fuck it!

I’m going to look like I want to look with the time that I have.”

Yet she was never negative, only resolute.

Visiting my Paoli apartment during our second year of dating in 1982.

For exercise, she wanted a bike because walking

numbed her feet so we picked up a matte green

Trek and she went pedaling on the Great Western Trail

while I rode along behind because I did not want

to pressure her to go too fast. That was how we proceeded

in many things, because I wanted her to last.

She let it all out that day with a burst of speed, clinging to the wig

on top of her head as the tires rolled on crushed limestone

taking her away from the feeling that life was limited.

I rode along behind feeling the breeze of anticipatory grief across my face.

In some way she knew what was coming as well,

and that Subaru was a last grasp at life itself.

A week later she could hardly get off the examination table

And by early March of 2013, when the medical oncologist

pulled me aside, there was true empathy in her recommendation

that we go to palliative care.

Sharing a kiss after I’d won a road race in 1984.

In many respects, I’d been there for years

because the woman I’d known, or the person she wanted to be

had been slowly stripped away by cancer’s rigors

and all that it represents. That means letting parts of yourself go

because there is no other choice.

She gave up calling me by the nickname “Lover”

and used the name Chris whenever we talked.

During those last weeks, I sat by her bed

asking forgiveness for whatever ways I might have failed her

if that was the case. In response, she turned to me and said,

“Oh, Chris, I’m sorry about all the stuff.”

She referred to all the keepsakes and everything kept in boxes

throughout the house from basement closets

to kitchen cabinets, and while she was no hoarder

I found more than thirty baskets in different styles

along with some money kept in quiet boxes

as a stash for new garden supplies.

Never did I begrudge her a dime spent on her love because

she’d sit outside facing her garden with a gin and tonic

admiring her work as the sprinklers graced the lilies

with moisture and the bergamot shared its wild bee scents

on summer evenings. Bats flew overhead and an occasional

nighthawk with its odd reaching up to a partial moon

as evening fell.

These things sustained her determination,

as she didn’t quit living even to the day she died.

We had to move her from the back bedroom

to a living room medical bed

and the EMTs rolled her through the house

on a computer chair in an act of inelegant

practicality. When she was settled back in bed

She looked up at me with a laugh and said

“I thought I wasn’t supposed to suffer.”

As the medical team went about its work that day

It was advice from her gynecological oncologist

that stayed with me. “This is coming to a close,”

he advised, “There’s nothing to be gained

in being negative. So be positive. Lie if you have to.”

Linda with my parents and Evan, our firstborn.

Those are the mercies of reality

because let us not fool ourselves with false positives

or true negatives. Instead, reckon with the truth

in each our own way. Years before, I’d ushered her

through an emotional breakdown brought on

by the fact that the cancer was back.

That truth was far too hard to condense

and much harder to swallow and I lost my wife

for a while to wherever the mind goes

when it can’t take it anymore.

A close friend and nurse then told me

“She’s going to need you now more than ever,

as her entire affect is off, and she’s afraid

of everything but you.” That was true,

so we held hands everywhere we went

until the shock finally wore off

and we invited short visits from trusted quiet friends,

those women she loved that could comfort her soul.

One of the many monarchs we “ranched” and released from her Batavia garden.

We never knew how cancer took hold, the disease

perhaps emanating from baby powder or talcum

as the legal advertisements later implied,

yet far too late for a cure, or recompense.

There is no room for second-guessing the past

when the future bears down on you from behind

and the difficult part about dealing with death

is how to handle it with children still facing most of their lives.

Surely, I did not handle that perfectly well

because anticipatory grief is an advance

salve for the soul before it all comes to pass.

That is also why on the week that she died,

I attended a Good Friday service and my brother told me,

“Dude, you’re walking straight into the pain.”

At the service, an interim pastor greeted me

with a tear in his eye and said, “It’s good that you’re here.”

Who knows the proper way to handle

the passing of a spouse of twenty-eight years

and four years of dating before that?

The immediacy of life’s endings all depend

on practical facts such as when

the afternoon nurse gives way to the night nurse,

and things seem to be winding down.

I recall her presence well, a slight woman with deep dark skin

and an even deeper appreciation of all that was about to transpire.

She stepped in the door and greeted me with something different

than a smile, but not sad, instead taking a long look across the room

at the woman in the home hospice bed breathing deeply.

Then she moved into the kitchen to prepare for the evening.

My son and daughter and I remained in the living room

with their mother and my wife for hours as her breathing grew heavy

and finally the night nurse came into the room and gestured to us

to gather at the bed, each family member holding a hand

or gracing her face with a kiss. Then it grew quiet

because there was nothing more to say.

I glanced at both my children, as each had come

from different places, one in New York and the other

from college to be back with their mother

who’d survived eight hard years to see them

grow into adults, or at least part of the way.

A trip to Chicago during one of her remission periods.

Then the arrangements began and we knew not what to do

but retreat from the finality of her last presence

as the funeral people took over for the transition to ashes

as were her wishes, but not her hopes.

That night the three of us could not bear to be apart

so we joined as children to watch the movie “Wreck It Ralph”

and its playfully destructive theme seemed just right

to distract us from the woes of loss and pain

and numbness, a heartfelt stain that does not always go away.

Our family was always able to talk

But never so amusingly as the day

that I dragged them all to therapy

when the news first hit

that Linda would be fighting cancer

and I wanted us all to be on the same page

in holding our bonds together.

They all participated patiently yet after the session

my son turned to us and said “I could have done all that.”

He proceeded to describe all of us in terms of personality

and how we got along and then he said some words

that I vowed to respect when he advised,

“Dad, just tell us the truth.”

That is what we all tried to abide during all those years,

allowing concessions for caution when the news

was not clear or the prognosis was still being determined

and only then could we be truthful enough

to offer direction, a parent’s prerogative.

The book I wrote about our journey.

These words are begging forgiveness for my own vain need

to tell all these stories as the means to process

what so many others go through in so many different ways.

I only hope they aid some others familiar

with these transitions in life.

I will also confess to needing affirmation on many fronts,

even going so far as self-aggrandizement on more than one occasion.

Also noted are mistakes made during all that caregiving

and one stands out in my mind, the day that she

needed to choke down the most awful liquids

in advance of a barium treatment test

and I grew impatient with her knowing

that her chemo regimen made even good food taste bad.

Yet I still stepped out on the back porch to chide her

with a call to just get it done. Her eyes flashed

and she raised two middle fingers with just two words

that to go along with that gesture,

and I deserved that.

The real object of her fury was the disease itself,

because it was the cause of all that trouble

and deserved to be told to go away

in the harshest of terms.

As they say, we “lost a good one” on March 26, 2013,

and yet there was one more moment of mysterious reckoning

when a friend of my daughter stayed over one night

as night as a gesture of support in the week following

her mother’s death.

The young woman lay on our couch with her feet facing

the spot where my wife’s head had been positioned

in the medical bed, when a set of three orbs of light,

one green, one white, one red, appeared glowing

in the darkness. Her scientific mind hesitated to tell us

that next morning, but we trusted that what she’d seen

was genuine and real.

A photo from our honeymoon taken at Waterton north of Glacier Park, 1985

These events form a helix of memories and realities

that we all seek to unravel with time, yet my perspective

on finality has forever been changed by the people lost

to life’s vagaries and its inevitable conclusion.

Call it anticipatory grief if you will, but I’ll not forget what

the night nurse told me after my wife had passed away.

“She was already gone before I arrived.”

A year after the world changed I sat next

to one of my wife’s closest friends who told me,

“You know, she told me that she knew you’d date

after she was gone.” I thanked her for that,

but related that I was glad she waited to share

that information because we all still need to make

our own decisions in this world. They are often

no easier to make than any other, and whether

we lose a wife or a father or mother,

there still remains a path to walk or run

and it takes resolve to not come undone.

A December 26 one cannot forget

The day after Christmas in 2012, my wife Linda and I were scheduled to meet with a neurologist at the Central Dupage Cancer Treatment Center. We managed to have Christmas together with her family that year even though her father passed away that winter. He’d had a heart attack while sawing up a giant oak in his own backyard, Following that incident, he developed dangerous swelling in his legs that ultimately led to kidney failure.

All that fall, we teetered back and forth between hope and reality for my father-n-law. He did kidney dialysis, and it seemed to work, but swelling kept coming back.

Meanwhile, Linda was experiencing an series of seizures. We thought they were a side effect from yet another set of chemotherapy treatments. In any case, it was scary stuff. We’d be out for a gentle walk and her body would start to tremor and shake, but she refused to give up her love of movement and being out in the sunshine.

A combined team of oncologists from Central-Dupage hospital and our longtime gynecological oncologist Dr. James Dolan conferred on her condition. Finally a test was ordered to check the condition of her brain. On December 26, we found out the disturbing news. The ovarian cancer that had afflicted her since 2005 had reached her brain.

“It’s not supposed to be able to breach the blood-brain border,” an oncologist told us. “But here we are.”

We sat together facing yet another shock on December 26, 2012.

It had been a long and difficult year. Back in March, I’d been fired from my job the day after the company learned that she had cancer. We’d kept her cancer a private matter when I started the job, but I finally had to tell them when it came roaring back late that winter. I knew that she’d require more attention with driving her to appointments, staying with her through chemotherapy and taking care of her in between treatments.

Granted, we had a wonderful caregiving team built up around us, but there are always some things that only the immediate family can handle, especially in a life-threatening situation. So I explained our situation in simple terms to the company where I worked, and they promised us support. That was on a Monday, but by Tuesday morning they came forward with an accusation that I’d breached company policy by posting an image of the work I’d done for a client on my personal website. When I walked into work that day, I came face to face the owner, an HR director and a lawyer equipped with all kinds of documents telling me that I’d somehow put the company’s reputation at risk.

No consideration was offered for the stress I might have been under, or how that situation might have affected my judgment. I was out the door and soon forced to pay $2000 a month in COBRA premiums to hang onto medical insurance. All because the owner was frightened that my wife’s condition might increase the company’s insurance premiums.

I appealed the case to the Unemployment system and was blown out of the water by the judge holding the teleconference. He introduced all the evidence the company presented and disallowed everything that I’d provided in relation to the case. I was railroaded, in other words, by a labor-sympathetic judge. Even my best friend, a labor law attorney, was disgusted by the outcome.

But rather than dwell in that space forever, I chose to reach out to that owner in subsequent years and we talked about all that had happened. Forgiveness took place.

But that didn’t help us in the near term.

Little miracles

That summer we struggled to make bills, and sat together praying one night that I’d find a freelance job to cover the $3500 we needed to make ends meet. That next morning an envelope arrived through our front door. It was stuffed with $3700. We hadn’t spoken to anyone about our situation. Other money from our church came our way as well. We hung on, kept her treatments going, but the cancer was relentless. By fall, a tumor was discovered next to her colon. If it could not be removed, the whole colon would need to come out. Then she’d need a colostomy operation. I admit that I was not looking forward to that outcome.

The gynecological oncologist did miracles in the surgery room and my selfish prayers were answered. And then, the day my wife got out of the hospital after surgery, we drove straight to the hospital where her father lay dying.

Crash course

My cycling jersey after the bike crash in September of 2012

As if that had not been enough challenges to face in 2012, I was still recovering from a bike accident that happened earlier that fall. In September I was cycling in a rare weekend getaway with friends while my wife staye back home to spendtime with her family. During the ride, I was cruising down a long hill at 40 mph when a case of bike wobble set in. I crashed in dramatic fashion, flying off the bike and tumbling down and embankment where I lay in shock with a broken collar bone. My friends didn’t know where I’d gone. One of them was ahead of me by fifty yards and the other had not yet crested the hill when I crashed. So I got help from a band of other cyclists who called for an ambulance. I wound up in a tiny Wisconsin hospital in Dodgeville. They pumped me full of Vicodin until someone finally reached the wife of one of my friends. She’s a nurse, and she came to gather me up for the trip back to our campsite.

All that time, my wife was at her parent’s house having yet another seizure. My daughter begged her to go to the hospital, but in typical fashion, wife refused. When the call came that I’d been in a bad bike crash my daughter was in the center of all sorts of trauma. A dying grandfather, a mother shaking to death from cancer, and a father now injured badly after a bike accident.

The effects of trauma

We tend to take these traumas too much for granted in our lives, but they do have long-term effects. We grieve, but perhaps we do not fully process what’s gone on. We move out of that emotional space, but probably not all the way. We deal with what we can in the moment, but life has its demands. So we trundle on. Not fully healed, yet not terminally damaged. If we’re lucky.

During the late stages of my wife’s life, my son was working in New York City. He had to deal with all this strange news from afar. “Do I need to come home?” he asked. It was hard to tell him everything that was going on. It was even harder to figure out what expect of him. My wife said, “Tell Evan I’m fine. I don’t want him to worry.”

My daughter was finally off at college after two+ years of coursework at a community college. She was doing amazing things in her communications studies, even doing live spots on public radio that summer. Her mother was so proud and amazed. We’d sit close to my Mac listening to the live stream and she’d turn to me and go, “That’s Emily!?” Hearing our daughter work professionally on the radio was a welcome joy.

Dealing with the options

But the events of that year kept overwhelming us. And that brings us back to that moment in the cancer treatment center when we found out that my wife’s cancer had moved into her brain. “Here’s what we can do,” the neurologist told us. “We can go in through the top of the head and excise it. Then we’ll apply radiation.”

We sat there thinking about those options. My wife did not have to think long. “Yes,” she said with resolve. And she smiled, “I mean, why not?”

Why not, indeed. We’d been through multiple surgeries, countless rounds of chemotherapy and many times, we got back to some form of ‘new normal.’ But this felt different to me. I looked over at her and smiled. She gave a thumbs up sign when she was ready to go.

Before the brain surgery and radiation. I’ve kept this photo for ten years.

So we came back for the treatment. They didn’t even have to shave her head. She’d lost her hair several times over through treatments, and this time her hair had not come back at all. She stripped off her wig and they began the process of affixing a stabilizing unit to her skull. It consisted of a circular metal band with screws that would be used to hold her head completely still. She posed for a couple quick selfies using the Photo Booth application in my little black Mac Laptop, and off she went.

The treatment worked. They captured and killed the cancer in her brain. The seizures stopped. They gave her a steroid prescription to deal with the swelling caused by the surgery and radiation. From there it was off to the races. Those steroids turned her into a Survival Machine. Her personality became magnified. She cleaned and cooked and sat up writing lesson plans for the preschool classes she taught. But as the steroids added up in her system, her sense of judgment disappeared. She spent money we didn’t have. One night she researched a new car, and that next day, we drove to the Subaru dealership and bought it. I wasn’t sure if she was getting money from her parents or what, but I sensed that something final was happening, and decided to go with the flow.

The steroid effect

Toward the end of February, she could no longer handle teaching at the preschool she loved. Her spaciness increased, and it frankly put the children at risk. I collaborated with her director to ease her out of the position. That was absolutely necessary. Yet despite our efforts to be kind, something in her broke the day that she learned she could no longer teach.

Once the steroid prescription was eased, her body and mind fell slowly back to a normal state. That was when I knew that she would not live much longer. The stress and fatigue of eight years of cancer survivorhood wore her out. During one of our last visits with the oncologist before bringing her home for palliative care, she was too damned tired to even get off the treatment room table. I spoke quietly with the oncologist that day. She was kind. And honest. And earnest. “Take care of her,” she told me.

Linda Mues Cudworth passed away peacefully in our home in March of 2013. My son and daughter were together with me that night. It is both a blessing and a strange truth to be present when someone you love that much passes into eternity.

Aftermath

We’ve all gone through gyrations in the wake of her passing. My son suffered through depression and a period of addiction. He’s emerged with a will not just to survive, but to help others process their mental health in constructive ways.

My daughter was just coming into her own as a young woman when my wife passed way. In many ways, that left a void in her that is hard, if not impossible, to completely heal. Every year, she recognizes more of her mother in herself, and the pain of losing her mom keeps turning over. Those are legitimate feelings. I know other women that have lost their mothers. I wish at times they could all talk with my daughter.

As for me, I’m not sure that I fully processed all that happened that year, or perhaps the many years before. During my wife’s eight years of cancer survivorship, I was also the primary caregiver for my father after my mother passed away from pancreatic cancer in 2005. That was the same year that my wife Linda was diagnosed with ovarian cancer.

My father lived another four years after Linda died, and I did my best to take care of him. After my wife’s passing, I admit that what I wanted most was to be free of the constant pain and fear involved in caregiving. But there was still a job to do.

Coping

During the eight years of caring for her, I’d been on and off supportive medications such as Lorazepam to help me deal with the anxiety of caregiving. It did its trick as needed, but some of that stress sinks deep into your soul.

I recall trying to ride my bike with friends during that period. I’d be out on a fifty or sixty mile ride with them, but when it came time to ride hard or compete, as cyclists love to do, I often did not have the will to keep up. I’m pretty sure that what I experienced was an active sort of post-traumatic stress disorder. Not the kind that comes from being in a war, or witnessing a murder, but the kind that comes from not being able to deal with personal shocks over and over.

As a form of therapy, I started blogging to our caregiving group to communicate some of the feelings I had about the things we were going through. Much of that was quite positive, and I’m proud that we found ways to find blessings and hope in all that trauma. That’s the right kind of pride. This blog is an echo of all that.

Anniversary

But this year, when December 26 rolled around, I realized it’s been ten years since that strange day when we found out that the cancer had moved into her brain. Once we knew the cause of her seizures, it explained quite a bit about what was going on with her body

But it also brought on conflicted feelings in my mind. Should I hope for her to continue going through the stress and pain of cancer survivorship? At that point, I began to grieve in real time. I understood that I no longer wanted to see her go through the awful stuff. The sickness. The numb feet and hands. The fear. The trauma of surgeries. The loss of life quality. Giving up the things she loved to do. None of that is ever what I wanted for her. It certainly wasn’t what she wanted. Some part of me was relieved when the pain was over. Through faith and reason and love of life, I began to move on.

For these reasons, I got ahead of most of the people in my life by recognizing that she was not going to make it through the year in 2013. I didn’t know how long it would be before she died, but I knew for certain that it would happen. Even her doctors were astounded at the job she’d done for so long in staying alive.

That’s not the kind of news that people want to hear from the primary caregiver, so I kept it to myself. Perhaps that was a mistake of some sort. But my wife had plowed through so many obstacles during her years as a cancer survivor that none of us could imagine it coming to an end. She was so tough about staying alive it did not make sense to question her. She surely showed us all what it means to love life. She loved her children fiercely, almost to a fault at times.

Endings

So we didn’t make end-of-life elaborate plans. We were so occupied with keeping her alive that we never discussed what to do when she died. But earlier in life, we’d talked about cremation, so that’s what we did. Her ashes rest under a grave marker next to her father in the Lutheran cemetery in Addison where she grew up. That town was the place where she attended the church gradeschool, then moved on to Addision High School. She graduated Magna cum laude from Northern Illinois University.

We met in October of 1981 and she lived until March of 2013. In all, we had a great life together; full of family, friends and most of all, our children.

The lilies being watered in our garden, circa 2011.

She also loved her garden so much that it’s hard to describe the satisfaction she got from her green craft. She’d sit in our LL Bean Adirondack chairs staring at her garden with a glass of wine, or a margarita, or one of her strong gin and tonics in her hand, and just enjoy.

Perhaps that’s why I moved on quickly from the trauma of her last year of life. That’s not how I wanted to remember her.

I chose to remember her cherishing the work she loved. She also told a close friend, the preschool director who served as our close caregiver for all those eight years, that she knew I’d date if she ever passed on. But that friend waited a full year to share that quiet bit of insight with me. I thanked her for waiting. We all need to make decisions on our own terms. I’m grateful to have had a wonderful life with my late wife.

I’m also enormously grateful to have found love again.

Gaining traction

Life is often complicated, and even the people closest to you have a hard time understanding the reasoning or motives behind some of the decisions we make or the changes and impacts that come with them.

Ten years on from December 26, I hope that people gain from reading this and find ways to embrace life even in the face of trauma, and even if life turns out different from what they expected.

It’s indeed a strange thing to go from the traditional joys of a December 25th to facing moments when the world itself seems to shift underneath your feet. Sometimes the best thing to do is to keep those feet moving, to find traction in the things we do and love every day. And please, let’s forgive ourselves for wishing the world would just stand still now and then. Take some time. Look at your garden, whatever that means in your life. It is the work of your life.

I’m in love with stacey’s mom

See that iRobot® Roomba® coursing through our dining room? That’s a recent addition to our household, purchased by my wife to sweep up dog hair and detritus on the downstairs floors.

Our Roomba is named Stacey.

She named the Roomba Stacey. “I don’t know why,” she told me when I inquired about the name. “It just seems to fit.”

This is not a paid endorsement. The arrival of Stacey in our household is a direct result of my wife getting sick of looking at dog hair around the house.

My wife also loves a good bit of technology. She taught our musical friend Alexa to instruct Stacey to begin her morning rounds at 9:00 a.m. The sound of Stacey whizzing around bumping into walls is audible for an hour as we work in our respective home offices upstairs. Then Stacey rolls back to her dock to charge up for another day. That makes my wife so very happy.

Tech woman

That’s not the only tech my wife adores. She’s got a heart monitor for her many workouts as an Ironman Triathlete. She wears a sleep monitor strap to track the quality of her overnight rest. For everything else, we have Garmin tech to measure swims, runs and rides.

You might say Data is her friend. But I’m her husband. And I’m in love with Stacey’s mom.

When we first met we kept the “L” word off the table for a year or so. She was coming off a divorce and I was a relatively recent widower. But the more time we spent together, the more commitment we felt. She even asked the point blank question: “Are you sure you don’t want to date someone else?” I said no. Then after a year or more, one or the other of us said the word “love.” From then on, we didn’t look back.

Guilt factor

I’ll admit that it’s still a little hard to write about the L word in relation to my wife to this day. Having loved my first wife for twenty-eight years of marriage (and four years of dating before that) through the day that she died of ovarian cancer, there’s a touch of guilt associated with proclaiming love for this woman to whom I’m now married. But loving again has nothing to do with not having loved the person before her. If anything, it affirms the fact that love is real, and that I’m capable of it.

That’s the right kind of pride.

Love talk

So I’ll say it again. I’m in love with Stacey’s mom. Here are some of the things I love about her.

We laugh together in the car quite often. To stoke our conversations, I’ll raise an idea about some doubtful topic on purpose that she inevitably swats down with a bit of joyful skepticism. “No…” she’ll intone when I gigglingly make an inane statement, “That’s not how that works.” Then we riff on the subject by making even more jokes about it. I love that in her.

I love her head to toe. She takes good care of herself and we have an affectionate relationship. I love giving her hugs and feeling the strength of her back and arms and the warmth of her arms around me. When I give her massages her leg muscles feel like broad ropes or sheaths. Over the last eight years, I’ve gotten to know her typically sore spots earned from workouts in swimming, riding and running.

Sudden smile

She has a sudden smile that attracted me instantly on our first date. That smile is my reward for pleasing her or making her laugh. She often compliments me on finished projects when we’re working on around the house. Hearing her say, “Nice job, honey,” is one of most satisfying statements a man can hear.

Artful minds

We enjoy seeing aspects of the arts together. Exhibitions. Musicals and concerts. She knows music well and though she’s a bit younger than me, our musical tastes line up well. Except for certain artists. She’s not a fan of Todd Rundgren or Dan Fogelberg, for example, nor Rufus Wainwright. So I don’t tell Alexa to chime those up unless I want to tease her. Then I might tell Alexa to play Dan Fogelberg’s “Longer” and give her an Ear Worm for the next day or so.

The dance of life

I like how she dances too. Her moves are both alluring and demure at the same time, and when she’s lost in the music, she doesn’t care much about whatever else is going on. “Dance like no one is watching,” is the popular phrase, and I follow her lead. Catching the shine of her eyes while we’re dancing makes my heart jump.

And I’ll also say that I’m ardently, physically attracted to her too. Even with all the images floating past our eyes in this digital day and age, it is the site of her that makes the sap within me rise. We lose ourselves in each other.

So while the song “I’m in love with Stacey’s mom” celebrates cross-generational lust through the naive notions of a young boy fixated on a friend’s mom, there are more ways than one to love a woman.

And I’m in love with Stacey’s mom.

What it means to lose a longtime friend

Five Luther College teammates, from left to right: Dani Fjelstad, Steve Corson, Paul Mullen, Keith Ellingson and Christopher Cudworth.

I’m driving out to Iowa today to share in the visitation and funeral for a longtime friend, Keith Ellingson. He was a freshman year roommate at Luther College where we were also cross country teammates.

After that, we worked together in college admissions, then parted ways as we got married, raised children and engaged in our careers.

He built a legacy as an excellent coach in track and field and cross country. His worked earned him a place in the Simpson College (IA) Hall of Fame. Dozens of his athletes earned All-American status, and one of his decathletes made the United States Olympic trials, no small accomplishment for a Division III collegiate athlete.

His achievements were many, but he was perhaps proudest of his three daughters, Jessica, Bailey and Catie, all of whom I’ve followed in their careers and family life as well.

Back in 2010, Keith lost his wife Kristi to ovarian cancer. Then in 2013, I lost my wife Linda to the same disease. That was a strange convergence for two longtime friends. Our wives met several times at our college reunions where they quietly shared the challenges of chemotherapy, surgeries and survivorship.

As if that weren’t enough of a rough outcome for my friend Keith, he was later beset by Parkinson’s disease, a condition that muted his physical and social affect. Despite that challenge, he never lost his wry sense of humor or his love of storytelling. Sometimes I had to lean in to hear what he was saying, but it was always worth it. Every. Single. Word.

Then he was diagnosed with a form of Alzheimer’s disease as well. None of this was what I ever expected for him. Throughout his life he was an active athlete and vividly social being. Many times in his presence I was reduced to absolute laughter by his incredibly quick wit. He had a laugh that seemed to say so much as well. It was a welcoming and yet objective sort of laugh. As in, “Can you believe this?”

Over the last year Keith had become more animated, the result perhaps of some medications that worked well. A large group of his friends and former athletes conducted Zoom calls with him, swapping stories… and asking Keith to tell a few of his own. Those calls were akin to the Knights of the Roundtable, sharing old “war stories” of track and field triumphs and failures. We laughed at ourselves some, and Keith laughed along with us.

Along the way his daughters got to know some of us a bit better as well. We exchanged some direct messages, and I was in the process of gathering information to nominate him for Luther College Hall of Fame status when I learned of his passing. He deserves that HOF honor for his work as an athlete, as a coach, and as a longtime supporter of the institution. Even through his struggles with Parkinson’s, he led our class reunions several times, and I did as well. His classmates revered his perseverance, I can assure you.

The time that has passed does indeed make me think about what it means to lose a longtime friend. I think of all those college reunions and can count the years, but it would require more than a few hands these days. Yet I don’t feel old, because having lifelong friends keeps you young in many respects. Those shared experiences are sustaining in the long run. It means something to work together through thick and thin. To offer that call of commiseration when needed. To extend condolences when appropriate.

Then we get back to the business of living.

That’s not always easy. But that’s what it means to lose a longtime friend. It means you can have gratitude for the time shared and even the time apart. They say absence makes the heart grow fonder. Well, with longtime friends it is often the case that once you touch base again, it is like you never left.

The physical Keith is gone. That needs to be said. I’ve been with my mother when she passed away, and my father too. I was by the bedside when my wife died in the company of her two children, and not long before that, her father as well. A few years ago, I lost a longtime friend that had been my baseball coach when I was thirteen years old. He was my running coach in high school and a longtime friend thereafter.

These bonds are important to all of us. One of the interesting products of social media is that people who knew each other from “back then” reconnect and find out they’re friends in new ways. That has redefined how some of our social networks exist and flourish. I consider it a blessing to have met some of my longtime friend’s daughters through Facebook. Now we’ll meet in person today.

The loss of a longtime friend is hard. If I know anything about Keith Ellingson, he would like it if his passing led to emotional support for his daughters and their families. I think of my own daughter Emily and my son Evan, and how much they’ve missed their mom since she passed. In so many ways we are all family, and through that hope we might all find healing. That is the right kind of pride.

And that is what it means to lose a longtime friend.

From bitter to sweet memories on the 7th anniversary of my late wife’s passing

Linda and Chris
Our early dating years.

Tomorrow marks seven years since my late wife Linda Cudworth died after eight years of survivorship through ovarian cancer. The diagnosis came as a shock, as did multiple episodes of recurrence. Each time we’d reel from the news, go back into treatment and compartmentalize the best we could by using the phrase, “It is what it is.”

Those last months during the winter and spring of 2013 were confusing because doctors treating her for seizures learned there was a tumor in her brain. I’ve never published photos of her during that last round of radiation treatment because while we made the best of it, snapping pics using my laptop Photo Booth and laughing as the absurdity of it all, it was a strange world we were about to enter, because ovarian cancer was not supposed to be able to pass through the blood-brain barrier. But it did.

LInda and Chris
All dressed up and going somewhere.

We treated it with radiation and she started a regimen of steroids to contain the swelling and her personality became magnified. She lost native inhibitions about many things. On one hand, that was disorienting, as it ultimately became impossible for her to continue teaching at the preschool she loved. On the other hand, it proved to be liberating as she used those final bursts of steroid-fueled energy to buy a beautiful piece of art. She also stayed up late at night to research and buy a new car even though she abhorred going online. In sum she lived life to the fullest, however manic it might have been.

And that was bittersweet. Because when the steroids stopped, so did her energy. She passed away a few weeks later in the company of her husband and two children. Still, she never lost her sense of humor. After I’d arranged for palliative care in our home, we moved her from our master bedroom to the hospital bed in the living room where nurses and such could tend to her properly. The journey from bedroom to living room was awkward and difficult given her weakened state, but she looked up at me once she was tucked into the cover and smiled while saying, “I thought I wasn’t supposed to suffer.”

LindaAtGlacier.300x300
On our honeymoon at Waterton-Glacier

Most of that was indignity, and my late wife was a person who believed and abided in dignity in all she did. It was part of her beauty as a person. She also respected propriety, which made it amusing to think back on the fact that I showed up a night early for our first date. “What are you doing here?” she asked. “Our date is tomorrow night!”

She agreed to go out for a short dinner before hosting her parent-teacher conferences at the high school where she taught special education. But before we parted that evening, I got a taste of her naturally biting humor in reminding me that I ought to call confirm a date.

We got to know each other a little that evening and followed up with a hike to Starved Rock State Park. Stopping on a high ledge for a picnic on a mild November day, she broke out a lunch of apple-walnut bread sandwiches, cheese and wine served from a leather-covered flask. That implement was a remnant of her high school hippie days.

LindaWithFirework
Enjoying our festive 4th of July traditions.

We dated four years and even survived a long-distance romance early on when I was transferred from Chicago to a marketing position in Philadelphia. She visited me on Thanksgiving that year despite her mother’s objections, and I moved back to the Midwest the following spring when the company decided to disband the entire marketing department due to misguidance by the Vice President.

That would be one of a few job upheavals experienced over the years, and we survived them all. Our children came along in our late 20s and early 30s. Soon our lives were immersed in preschool, elementary adventures, and all the way through high school performances in music and drama.

We also belonged to the highly conservative church synod in which she’d grown up. The pastor that married us at the time was, however, a grandly considerate and patently open-minded man that once gave a sermon titled, “Do-gooders and bleeding hearts : Jesus was the original liberal.”

Emmy in Garden

Our lives swirled with church activities as our children passed through Sunday School all the way to confirmation, where they roundly passed the tests despite having to choke down conservative ideology about evolution preached by the pastor that had long-since replaced our marriage counselor.

After 25 years we moved up the road to a more tolerant and progressive Lutheran church. It was gratifying to learn that our friends from the former church did not abandon us. In fact without their help and the guidance of one of Linda’s best friends, a woman named Linda Culley, we would not have had as much grace and good fortune in the face of the perpetual challenges served up by cancer survivorship.

CudMuesPhotos-61
At 7 Mile Pinecrest

Now what I like to think about are the camping trips we took to the north woods while dating, and later, when we had small children, we’d spend a week each summer at a humble resort called 7 Mile Pinecrest thirteen miles east of Eagle River, Wisconsin.

Our children paddled around in the water and slipped off to Secret Places in the woods while their father fished in the early and late hours and went for runs half-naked in the pine woods north of the resort, swatting at deer flies the entire time.

CudMuesPhotos-55
Linda and Evan reading together.

At the center of all that family joy and adventures was Linda, whipping up sandwiches and sitting with a glass of wine on the small beach overlooking the lake. That was the only time the Do Not Disturb sign seemed to rise on the Mom Flag.

And when we weren’t visiting or traveling or doing school activities, Linda was immersed in planning, purchasing and planting her garden every year. Her priorities were indeed God, Family, and Flowers.

CudMuesPhotos-35

She was a really good person. That’s what so many friends have told me over the years. I was married to a really good person, and that makes me think of what a close friend told me when he first met her. “This is a good one, Cuddy. Don’t let her get away.”

It is bittersweet and sweet to think about all those years together. My daughter went through our stacks of photos to digitize the images and I’ve waited until today to open it up and pull some memories out to post with this blog. Holding people close to your heart is first and foremost the right kind of pride. I hope this writing inspires you to consider the importance of people in your lives.

And to realize as well that life does go on. She told our close friend Linda Culley that she knew, if she were to pass away from cancer, that I would meet someone again. And I have found love. But it does not mean the years with Linda Cudworth are forgotten. Far from it.

These memories can lift us up. Give us courage to go on. Cherish the life we had as well as the life we have. And that is the right kind of pride as well.

 

Six years on and beyond

Linda and Chris.jpgDuring eight years of cancer caregiving for my late wife Linda, who passed away six years ago this day on March 26, 2013, I grew to understand many things about other people. How some have such a heart for others. How giving they could be. How friends willingly took on chores too difficult to imagine. All of it done without judgment. These things came true in our lives.

There were also mysteries that were beyond explanation and should remain that way. During one period of time when I was out of work to take care of her needs, we sat together at our dining room table and added up the money needed to cover our bills. We’d already paid the $2000 COBRA monthly premium for health insurance. That was absolutely vital or we’d be broke in a minute from a running list of medical bills that came our way. These included chemotherapy treatments and surgeries that cost tens of thousands of dollars. In the days before the Affordable Care Act and protection from  pre-existing conditions, clinging to your health care was a life or death matter.

Somehow we made it week-to-week, month-to-month and year-to-year. But sometimes we just turned to prayer for help. So it was that we determined the need for $3500 to cover the rest of our bills. During periods when I had to be out of work to take care of her, I’d hustle up freelance work to cover our bills and more.

LInda and Chris.pngBut it was stressful. Sometimes we’d be pressed financially, and it was on one of those nights that we added up the bills, said our prayer and got her into bed to rest.

The next morning I came out to the kitchen to make her oatmeal and heard the front door mail slot creak open and shut. Whatever fell through the door made a solid thump on the floor. I walked out to check on the delivery because people were often bringing us food and other requests made through our caregiving website.

This package was different. The envelope was thick and bulging. I picked it up and opened the tab. Inside was a wad of money. $3700 worth.

I broke into quiet tears and stood there looking out the door. Whoever dropped off that envelope and collected that money was already gone. To this day I have inklings about who might have gathered that cash but in many respects prefer to leave it as a mystery. That’s what the folks who gave us the money apparently wanted. We used it wisely and gave a prayer of gratitude in response.

Yes, it’s been six years since my late wife passed away. But the kindness and grace of others that sustained us has never left my mind. I know it never left her mind either. In so many ways the support of others kept her alive during all those years in and out of remission after her initial diagnosis. We drew on that support for strength and hope during periods of both sickness and health. Our children felt that support, and in the ensuing years that remains an important part of our collective grieving process. Last year we held a memorial gathering in her honor. Rightfully so.

She and I met in 1981 and were married for twenty-eight years. Yet in many ways, we were also married to the world around us. It was that bond of vulnerability and hope that drew on the strength of others and became our main source of pride. The Right Kind of Pride. 

 

 

 

Love on steroids

A friend on Facebook recently posted a meme about what to do when a woman says “Do what you want.”

It then says, DO NOT DO WHAT YOU WANT. Stand still. Do not blink. Do not answer. Don’t even breathe. Just play dead.”

Ah yes. Hell hath no fury like a woman scorned.

But three years ago this week, I was living through a different brand of experience. My late wife was deep in the throes of treatment for a brain surgery stemming from ovarian cancer that had somehow circumvented the supposed brain-blood barrier and made its way into tumors that needed to be surgically removed.

That was in January 2013. Then the treatment was followed by a bit of radiation. And then steroids. That was when things got really interesting.

You’ve all heard of “roid rage,” which is when athletes get so hyped up they have no control over their emotions? Well, it’s real. And while my wife on steroids was not subject to steroid-induced rage, she did become absolutely fearless.

And let me tell you something, an absolutely fearless person can be a very scary thing. It was impossible in some ways to tell when she was being serious or not. We spent some money we did not really have. We bought a new vehicle when I wasn’t even working (thank God for my 960 credit rating at the time) and bunches of other things. I thought the money was coming from some unknown source, perhaps a gift from her very giving parents. But no.

A wife on steroids also cleans a lot. A whole lot. And then cleans some more. Entire shelves of formerly peaceful dishes were offloaded and wiped clean and put back in their places. Rooms got painted. She could not lie down for more than 10 minutes. “I feel great!” she’d enthuse.

The steroids also bulked her up. This was a bit disconcerting on a couple levels. She was already a tall, big-boned German girl. I felt like there was no room in the bed. And then she started snoring too. So I moved to the front room and slept there. No choice. It was like a freight train coming through the bedroom.

None of this do I blame her for. She was a wife on steroids. But it had a cost outside the home. Her judgment was impaired on many levels. Aggressive driving, for one thing. And her work as a teacher at preschool ultimately had to end. She was too spacey to do her job properly. Our close friend and her preschool manager called me one afternoon. We talked quietly about the fact that it was time to give it a break. Linda was simply too charged up.

And then the prescription for steroids ceased and she wound down like a clock. Peacefully with friends and family around she passed away in March of 2013.

But that month with a wife on steroids had its gifts as well. We purchased a painting by an artist whose work I’ve grown to love. Now I work in the same studios that artist once did, and it reminds me to take my work seriously. Yet joyfully.

In the long run, there was no way for go out of this world other than the way she did. But it was like an intense tryst with a powerful spirit, those 45 days with a wife on steroids.

Women have always seemed like intense creatures to me. It does not pay to mess with disrespect or lack of trust. But I do have to laugh when thinking back on what it might have been like to try to continue living with a wife on steroids. I really don’t wish it on anyone.

Most women don’t need steroids to be strong. They’re strong enough already. And if you think you’re tough, just give it a go. Push them to the point where they say, “Do what you want.”  See how far that gets you. But I recommend the advice in that Facebook meme first. “Stand still. Do not blink. Do not answer. Don’t even breathe. Just play dead.”

When I was very young, perhaps 14 years old, I loved the song by Cat Stevens called Hard Headed Woman. Something in me recognized the virtues of a woman that could both encourage you and hold you accountable. I’m dating a woman like that now, and grateful for it.

I’m looking for a hard headed woman, headed woman
One who will make me do my best
And if I find my hard headed woman
I know the rest of my life will be blessed, yes, yes, yes

Yesterday I also spent 45 minutes talking with my mother-in-law, who is a hard-headed woman in her own way. Her life has been spent exploring the difficult path of following Christ. Her search was so intense, she has crossed over the bridge to Judaism and back. This has been an illustration to me of the fact that normalcy and expectations are not adequate measures of a person’s true heart.

Nor the desire to love, and be loved. I wish that for all. My children. My friends. My family. My readers. If love were the thing on steroids, perhaps the world really would be a better place.