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The Oncologist, the Patient and CKN — Sharing Knowledge

Caregiving: A Perspective From Both Sides of The Coin

stephaniemadsenby Matt and Stephanie Madsen

 

Stephanie, Survivor:

A cancer diagnosis never affects just the person afflicted with the disease. Though the doctor found a malignant tumor growing inside of me, she might as well have told my husband that he had one growing inside of him as well.

In June of 2010, I walked down the red-carpeted aisle of an old, spacious, and magnificent cathedral to marry my best friend. From our second date, I knew he was the one I would spend the rest of my life with. We shared laughter, adventure, and innumerable conversations. He stole my heart and has protected it from the moment it entered his grasp. Within weeks of meeting each other, we fell in love and began planning our future – when we would have children, where we would live and raise our family, even the color of paint we would choose for the walls of our dream home. We had life figured out and were valiantly prepared to take on the world together, hand in hand.

One and a half years later our plans were derailed. At the age of 27, I was diagnosed with a rare and aggressive form of cancer. It was as if the canvas we had sketched our dreams on was wiped clean. The plans we had set forth were redefined and put on hold. We soon entered into the gates of Cancerland and were quickly thrust into an unknown arena. Decisions had to be made, and treatment began immediately.

Through multiple surgeries and treatments, recurrences, and cancer-free scans, my husband has stood firmly by my side in every moment. He has courageously taken the role as my caregiver, and has sacrificially offered to help with my countless needs. Not many realize that I am not the only one in this fight. My husband is firmly planted next to me on the front lines. When I rested in hospital recliners receiving treatments, Matt sat on the uncomfortable chairs beside me without complaint. When I was weak and pitifully sick, he would assure me and rub my back in comfort. When I had moments of depression and couldn’t battle fearful thoughts, he would encourage and pray for me. He shaved his head when I lost my hair so I wouldn’t feel alone. At my weakest, my husband mustered up strength and bravery to help me through. All without second guessing or complaint.

I’ve often shared that the role of a caregiver is equally as important as the patient fighting cancer.  Though I was the one ingesting toxins to battle the disease within me, my husband fought just as hard behind the scenes, making sure I could withstand the fight. He has sacrificed so much just to care for me. His patience, concern, encouragement, compassion, and love have altered the way I fight cancer. I am stronger with him beside me.

He is my guardian. We fight this disease together.

 

Matt Caregiver:

Have you ever seen the movie The Bodyguard?

Kevin Costner is a total badass in that movie. I watched it a lot when I was a kid. He ran around, protecting Whitney Houston from stalkers and bullets. He was a hero. I wanted to be a hero.

I can’t say I was fully prepared when my life started to parallel that story. My wife was diagnosed with a rare and aggressive form of cancer over two years ago. When we got the news, I knew that the roller coaster ride would soon commence. Life would never be what it once was, nor would it play out in the way I had intended. Instead of buying a house, a car, and having kids, we would be shuttling off to surgeries, chemotherapy treatments and radiation appointments, all the while keeping track of our mileage in hopes of writing the expense off on our taxes.

Let’s face it; in reality, I’m not fending off over-obsessed fans or valiantly diving in front of bullets (thank the Lord). My role is more concealed. Instead of being front and center, I’m like the Kevin Costner waiting in the wings, keeping an ever-watchful eye on everything that’s going on. And unlike Kevin Costner, there’s not a whole lot I could do except be there. I can’t make the disease go away. I can pray, and I can be there whenever my wife needs me. When my wife was sick in the middle of the night, I was awake with her. When she was too weak to get out of bed on her own strength, I helped her up. When all she could or wanted to do was lay on the couch, that’s all I did, too. I instantly became a professional chauffeur, personal assistant, and expert dog taker-outer. If I wasn’t at home or at the hospital, I was at the pharmacy, standing off to the side while the staff gathered up the hundreds of dollars worth of home injections and pills that I didn’t have the capacity to afford. As a caregiver, you do whatever it takes.

In those times, I’d often think back to the day I married Stephanie. “For richer or poorer… In sickness and in health.”

So this is what that meant. This is what I meant.

Being a caregiver is not a glamorous gig. As a caregiver, you hold down the fort. Your partner is down, and it’s all on you now: the house, the kids (or, in our case, the dogs), the money, the bills, making sure your family is fed, that they have a roof over their heads, clothes on their backs… and the whole “giving care” part. That’s your job now. Your job is no longer just your job. You will lose sleep. You will not be able to do some of the things you used to enjoy. You will sacrifice your own health to ensure the health of your loved one. And you will need never-ending amounts of grace and forgiveness.
You will do all of this, and you will likely not be recognized for any of it. You will feel left out. You’re in the wings, remember? When things go bad, prayers and support are 99.9% directed at your loved one. When things go well, congratulations and well-wishes will also be 99.9% directed at your loved one.
You’re the unsung hero, the bodyguard. Stay out of the way and save the day.

Often times, my wife gets told that she is someone’s hero. Nearly every day, she hears that from someone. People lavish her with praise, saying she inspires them. They want to make sure that Stephanie knows how much she means to them.

For me, my wife is the one telling me that I’m her hero. When she is everyone else’s hero, I’m hers. She sees what I do, the sacrifices I’ve made to make her as comfortable as possible as she fights the hardest fight of her life. She appreciates me. That’s awesome. That being said, if you know someone who is a caregiver, tell them how you feel about them. Do you appreciate them? Tell them. It’s amazing what encouragement can do. For every person you know who is faced with cancer or some other life-altering affliction, there is also someone in their corner who, if you’re honest with yourself, you likely have never noticed.

No one is meant to fight alone.

 


 

 

Matt and Stephanie Madsen are a cancer-fighting couple that live in Colorado. Stephanie is a three-time rare cancer survivor, blogger and writer. Her story has been featured on local and national television, radio, and print publications, and her blog, DerailingMyDiagnosis.com, has been featured on the social networks of Livestrong and StupidCancer. In addition to caregiving, her husband Matt works as a graphic artist and web designer. The couple and their dogs, Scout and Boone, make their home in the Denver area. To follow their journey, visit DerailingMyDiagnosis.com.

 

 

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