“Mark, we need to talk” I thought I had done something horrific. “The doctor showed me a partial scan of a huge tumor on my back, and it looks very serious”. As my mind reeled with all of the implications, I knew that Carol would already have the next step in mind. “I will need to get some more scans and tests, and see a surgeon to understand our options better”. In the weeks that followed we took those tests, saw that surgeon, and learned She had Ewing sarcoma cancer, a childhood cancer that rarely is found in senior adults.
On an early morning trip to Indianapolis, I wondered whether anything would be the same again. The next two years our journey would involve five major hospitals, several treatments, surgeries and therapies, a roller coaster ride of her doing better, worse, out of pain and back in severe pain. In this time God also healed Carol, reduced her tumor twice as shown by scans taken before and after. He demonstrated his healing power, He demonstrated his sustaining power and protection in the logistics and all the details. And then in the end, and in his perfect timing he still took her home. Carol Kerk finished her Journey December 27, 2019, and is missed by all who knew her. I (Mark) continue to live in Indiana and my journey continues. Even after two years I tell my friends, I am not where I want to be, but I am not where I was.
Understanding our Journey
Soren Kierkegaard said, “Life can only be understood backwards; but it must be lived forwards.” 40 years ago I truly didn’t understand, I thought our early college days as baby steps of learning to trust and obey; or as a canvas of God painting the story of our walk with Him, patiently waiting for his direction. 4 years ago I couldn’t possibly understand the future journey we were stepping into. Without God I would never have endured it, let alone understand God’s design. Now there are days when I think of God’s goodness to Carol, I think yes Carol, you get this, Carol you understand, because you see it from Glory. Now it is up to me to live forward, and to trust and obey even when I don’t understand, and I don’t get it. And I am also quite pitiful at waiting, BTW.
Our journey was an ever changing mix of anxious chaos of traveling, visiting doctors trying to understand her medical situation, interpreting their direction, combined with mind numbing siting in a hospital room waiting for doctor, or worse yet waiting for his call at home, for weeks. Yes, you could always point your attention to things to occupy yourself, but after a day or two there has to be a better plan. Thankfully, for the first time in Carol’s life she could sleep on command, anywhere anytime, and she did so, taking many naps. Her pain medication provided the help she needed to do this peacefully.
I was able to work remotely and did so when ever I could, but I also watched a lot of videos. There were also the on going full time jobs of insurance remediation and taking care of her medications. There were very few times when we weren’t preparing to go or going somewhere, or waiting for the next thing whatever it was.
Understanding our Challenges
I finally understood, looking over the time-line of of our journey, that although we got that there was no cure, we didn’t under understand that the de-bulking surgery was to be the last thing on her treatment agenda. The why was because the surgeon knew that his work would not restore mobility to previous level, but it would buy time at a lesser level. Carol had mornings where she had no leg strength, we had to help her by retraining her nervous system. Including all the weeks of therapy, the surgery added months to her time.
December 2019 seeking a new normal
We eventually were in Elkhart hospital for therapy and preparing to come home. I was anxious and worried about all the what ifs. We tried to think of everything. She had a companion while I was at work. The wheelchair was a hard transition, and I could tell her new normal was not what she wanted. Even so she made the best of it.
One morning Carol was not doing well, she feel asleep at breakfast. When I called the doctor her response was bring her to the hospital now, they began to give her some IV antibiotics but still her energy was declining. Our friend the hospitalist came to see us, he immediately dismissed the nurse and sat down next to Carol and held her hand.
“I want to tell you that your cancer is now shutting down your systems, and you are not going to recover from this decline. I wanted you to know that now so you could call your family and they can come say their goodbyes. My Colleague and friend is your doctor now, and he will take good care of you.” Words can not express how grateful we were for this gift of time. We were able to call all of our family and friends. Local friends were able to come and say their goodbyes. Many were able to come and say goodbye one last time, because of the doctor’s kindness to us.
A Bend in the Road, A Journeys end, and new beginnings for all of us
Journal Entry by Mark Kerk — December 27, 2019
It is with a heavy heart that I tell you, my praying family, that Carol went into Jesus's presence at about 12 midnight. She left this difficult, temporary home for her new eternal home very quietly and peacefully. We are thankful for that, she was experiencing shortness of breath and God answered my prayers for a quick transition to her new eternal home. This is yet another miracle of God, as almost every step of this Journey, pain and discomfort has been her constant companion.
With each journey's end, a new beginning comes after it. Please pray for me and my family as we embrace this new beginning. I will begin again this new year, yes, missing Carol as wife, mother, co-laborer, and friend terribly, but looking to God for Grace and Peace.
And even in this I will be thankful and grateful, for all my savior has done for me. If you are asking how this is done? it is done one step at a time as a Christ follower, accepting his guidance as I walk through this new journey. I hear you when you reply how tough that is, but the rewards of grace and peace are worth it. Thank you for your prayers.
Memorial Memories from Mark, December 31, 2019
Back in the day (mid-seventies) I ran into the staff housing dorm of summer camp to find a coworker to help me fix a crisis. I was hyper focused and headed out the dorm again when THIS GIRL interrupted me and introduced herself as Carol. I told her my name and left, quickly. Yes, she was cute, but I had a world to save. I found out later that I was abrupt with Carol the Nurse, a very important person at this special-needs camp for children. Uh-Oh I better apologize. And amazingly enough she forgave me and more amazing she chose to marry me! It is pretty rare to find someone so beautiful, so super smart, and someone who wanted to serve God first things first. It took me the rest of the summer to convince her that this engineer could be useful in her life and her goals of service.
She chose to come with me to raise a family in Quito Ecuador. Our toddler David only had a 128-acre-backyard to get lost in, but she never complained and found blessing amid the challenges. When the Kerk family moved back to Elkhart, she chose to make our home wherever we were (even Elkhart), and we learned to love this area. As time passed and we embraced many medical challenges. Carol always accepted them head on using her nursing skills to help her friends and family understand the current health complexity they were facing, or we were facing.
Through the years I have appreciated her masterful skill of explaining terms and health related details. I have seen many encouraged by understanding a situation and idea and being able to share with another, paying it forward. We had no idea that Carol's nursing skills would be so critical in our own health journey. We were in many different Hospitals and health systems, working to get care, but the names and definitions remained the same and Carol, time and time again, helped and enabled the staff to give her the nursing care she needed.
Carol finished her life the way she lived it, In the service of our lord and savior Jesus Christ. It was never enough to say she was a Christ follower, she would practice it, good times and bad, 100% of the time. I will miss her terribly, but I hold her legacy in my heart, to be thankful and grateful to God always as we move forward in this life.
Hi honey, we’re good, I going to be clueless now for a little while without you, but I know God has got this, and we will get it done. Thank you, I love you, bye for now.