Mike’s Story

The first creative writing I remember was 1962 – 2nd grade. I told about my dad’s 1931 Model A and how the windshield opened out “just like the windows in our classroom.” The teacher didn’t believe my comparison so at the next open house, Dad brought a photo to show her. (Secretly, I thought she should have known because in my eyes she was really old and had probably driven one new.) Also in 2nd grade, I learned the importance of spelling and not getting ahead of myself when writing as I shared the story of my dad’s weekend, hunting peasants. There is a lovely pill-box hat made of pheasant feathers in the top of mom’s closet – proof that one little “h” can change an entire story!

I had a 4th grade teacher, Mrs. Howe, who continued to encourage my creativity. And in 7th grade, I started a science fiction novel about Adolph Hitler being alive and living on Mars. Over the years, I’ve written articles for various clubs, civic organizations and our church. A few years ago, close to 20 in fact, I had a thought that I had been called to write a book of short daily readings based on Scripture. I went to Christian writer’s conferences and gathered information on publishing a manuscript. I filled half a notebook and then life got busy…. parenting disappointments and poor relationship decisions led me to think I was completely unqualified for such an undertaking.

But I kept writing.  By 2004, life was settling down.  God brought Mike Butler back into my life (another story!!) and our love grew. We married in June 2005.  We were working hard; juggling full time jobs and growing our own business.  Our family was growing – marriages, grandbabies – life was good.  He had been exhausted – working long hours on a very physically demanding job with a 3 hour daily commute were part of it, but I knew something else was wrong.  He finally went to a general practitioner who threw out a lot of diagnoses that “could be.”  She ordered blood work and said they’d call with results and schedule further testing after the Labor Day Holiday.  A few days later, her nurse called me and said that he was anemic and they wanted him to go see a hematologist.  The nurse had scheduled an appointment for him and said not to be concerned, but the hematologist office was in a cancer center, but they weren’t saying that he had cancer.  We were nervous in spite of her reassurance – fearful that they were going to tell him he had lung cancer.  As a smoker, who lost his father to that disease, we were rightfully concerned.  Thursday, September 4, 2008 our life changed dramatically.  When Dr. Manana Elia walked in the room, we were both immediately impressed with her take charge, yet relaxed attitude.  I’ll never forget her words nor her Russian accent.  “Well, you know you have leukemia…” and when she saw the look on our faces, she said “Oh my!  You didn’t know!”  Why that nurse at the GP office didn’t tell us, I don’t know.  She had shared that his red count was 2.9, but she did not tell me that his white count was over 300! (Normal is 5-10) But, Dr. Elia stopped – backed up – and gently started explaining Chronic Lymphocytic Leukemia and the initial treatment plan she had mapped out – starting with a blood transfusion the following morning, a bone marrow biopsy on Monday, surgery to place a chemo port on Tuesday, a PET scan on Wednesday and back to see her on 9/11 for result review and education about the 6-month chemo plan.  Through the years, we came to respect her honesty, intelligence, humor, kindness and her commitment to make sure she answered every question – no matter how many times we asked the same thing.  As my husband’s 12 year journey through cancer became more and more complex, I felt like I needed to be documenting our experiences and our feelings. It seemed the emotions were just too raw to lay out in black and white, but I journaled from time to time.  We talked together about sharing Mike’s cancer story, but neither of us really wanted that to be our focus. Mike didn’t want people to feel sorry for him. And, quite frankly, we were really just too busy living! He wanted everyone to just enjoy their lives and live without anxiety over blood counts, chemo reactions, stroke deficits. We were always honest and open about his diagnosis and any prognosis from his medical team, but we didn’t dwell on the day-to-day struggles. And, we did it very well. So many people at his memorial service would say to me “I had no idea he was so sick!” Well, that was his goal. The day before he went to the hospital for the last time, he was out in his old truck running errands. To say he lived a good life is an understatement. We had a great life. While there exists a “Mike-sized” hole in my life, memories of him are rarely sad. He lived life with happiness, and those are the memories that keep me smiling.

As his caretaker, I often heard “You’re so strong!” The reality is, my strength was not sufficient for the task. Nor was Mike’s. We drew strength from our faith in God and the work of His Holy Spirit in our lives. And because we each had that relationship with God, we were also able to draw strength from each other. God always made sure one of us had enough…on his bad days, I was able to rally and be the cheerleader he needed and on mine, he was always ready with his great hugs, holding my hand, a wink, a smile, a nod.  I may have had the official title of “caretaker” – but truthfully, we took care of each other.  He rarely complained.  He rarely missed work.  Being chosen as his wife, being given the opportunity to care for him, to walk with him through this cancer journey, was truly a blessing.  Some of my greatest moments have come through caring for him. 

In January, I finally set up a WordPress account. On my way to work, or in the shower, my mind would write eloquent, meaningful and inspirational pieces – destined to be great American literature….but sitting at the keyboard, my mind went blank. Mike would ask “Did you write anything yet?” I’d admit “Only in my head.” and he’d respond “Can’t read it there!” Those last weeks, sitting with Mike in the hospital – certainly in stillness at that point – holding his hand, I’d think “I should be writing this down.” All the ways that we both felt God’s calming Spirit with us. But, I didn’t write.  I just kept holding that hand. So glad I did. And now, with no hand to hold, no distraction, it’s time to tell how God worked in our lives. How He gave us strength, determination and direction.

So, Sweetheart, I’m writing it down.  I’ll tell our story – your story – the story of survival, of hope, of making the best of every day.   The next post – chemo, remission and stroke.