I’ve been thinking… about being a human with a serious illness

posted in: Illness 1

A surprising thing happened on my way to celebrate and promote Waiting for Good News, Living with Chronic and Serious Illness, (Minneapolis: FortressPress, 2018). I wrote this book from the perspective of someone who loved and lived with a father, and later a husband, who had chronic illnesses. It’s a good book, full of information and stories from others, especially targeted at those who care for someone with illness.

The surprising thing: I was diagnosed with ductal carcinoma in situ (DCIS) just three months before the publisher’s release date. Cancer! Me! Who cares if Stage 0 Breast Cancer is not life-threatening? Who cares if the area is small and easily removed by a lumpectomy? Who cares if surgical recovery is quick and mostly painless? I do and so do the 60,000 others who are diagnosed with DCIS each year in the United States (according to the American Cancer Society). Ironically, my sister, Sue, who copy-edited my manuscript before I sent it to my editor at Fortress Press, was diagnosed with an invasive breast cancer (Stage 1) just as I was beginning my post-surgical radiation treatments.

Even before the book was released I was dealing with anxiety about what this diagnosis meant to me, my life, and my future. There were days when I went to the manuscript to remind myself of the process many of us go through when we receive a diagnosis we don’t want to hear. I laughed when my radiologist “scolded” me for minimizing my experience. “I don’t just have the T-shirt,” I replied. “I wrote the book!”

But could I really practice what I preached? It was an odd experience that (to date) has lasted for five months. From the first phone call following my annual mammogram, “We need you to have another mammogram,” to the biopsy and receiving the results and hearing the diagnosis, through the MRI (to ensure there would be no surprises during surgery), and the radiation seed implant the day before the surgery, the surgery itself and an appointment with an oncologist to discuss follow up medication, and through my four weeks of daily radiation, my life was not my own.

All pretty orderly, reasonable and expected, right? So why do I feel so strange? Why did I suddenly become hypervigilant, terrified I’d forget an appointment, or fail to follow through on work tasks? A reasonably good driver, I panicked every time I made a lane change on my drive from my home in Winterset, about 30 miles from the Des Moines Cancer Center? A wonderfully patient oncology nurse helped me see that I was feeling so out of control of my life that I was working overtime to control anything I could. Damn!!!  I wrote the book.

I really wrote the book! What is wrong with me?

Ah-hah. I am a human being with a serious illness. My relatively predictable life was turned upside down and inside out and I was at a loss to get it back in order (see page 10, Waiting for Good News). Even as I experienced unusual (for me) emotions, fatigue that seemed to come out of nowhere, and this need to “get a grip,” I absolutely knew that God was present with me and I would not experience anything without God’s compassion holding me up. What sweet comfort. And what a grand reminder that none of us is destined for health issues and none of us is immune. “…for he makes his sun rise on the evil and on the good, and sends rain on the just and on the unjust (Matthew 5:45, NRSV).

So, I’ve been thinking. Thinking with deep gratitude about the highly skilled and deeply compassionate health care providers I have now had the privilege to know. Thinking about the people of the congregations I serve and their ongoing outpouring of love and care, complete with stepping in to lead when I could not, and sending gifts, cards, gas money, letters and regular text message check-ins. Thinking about family and friends in Winterset and the amazing ways they showed their care and support.

I’m not really a Pollyanna type, but I do see silver linings. I do trust God to redeem all things, I do see the gifts of humanity in seasons of struggle. I do count my blessings. And, just as soon as I write those words, I start to think again.

I’m thinking…about those who do not have the support that I do; those whose cancer is advanced and is life threatening; those whose lives are altered in such a negative way that my words are offensive to them.

I am so sorry. I write always to help and not to hurt. I am not a fan of bumper sticker solutions to difficult problems, and seldom offer the bible verse that will provide all you need, but…

here is my prayer for you, borrowed from the Apostle Paul’s letter to the Romans: May the God of hope fill you with all joy and peace in believing that you may abound in hope, by the power of the Holy Spirit (Romans 15:13, NRSV).

Until next time,

Sally