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.

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