Be Prepared: A Patient Perspective

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I’m not prepared. It could be a few months, a few years, maybe longer. I don’t know how bad the verdict will be, but whatever it is, I’m not prepared.

They always told us to be prepared. That was our motto. At age 7, I joined the Brownies, the beginning of 12 years of being molded by Girl Scout philosophy. “Be prepared.”

I thought I was ready for anything. After college, I ran head-on at life—moving from city to city, job to job, adventure after adventure. People admired me and told me I was brave, and I was a risk-taker. But what kind of risk had I taken to bring on my experience with cancer? What could I have done to be prepared?

Breast Cancer Returns

My best friend is with me for moral support. My notebook and pen are in hand in case there are things I need to remember. My friend has one as well—another set of ears to hear whatever directions they give. We are prepared to listen well.

After waiting 29 minutes, the doctor enters. We have only just met, but she already knows all about me—at least, my medical history. She rattles off names and dates of prior treatment and current diagnosis without looking at her notes. She is prepared.

“How bad is it?” I ask. I must not have heard her correctly.

“The breast cancer metastasized and spread throughout your skeleton.”

“Is there treatment?”

“I’ll always be honest with you. We cannot cure it, but we can keep you comfortable.”

“How long?”

“Statistics say about 2 years, but you may respond to treatment, so it could be longer.”

I stare at her as a few tears roll slowly down my cheeks. Two years. My expiration date.

“We’ll need some bloodwork. I’ll send my nurse in to arrange that for you and some appointments for treatment. I’ll see you in about 2 weeks.”

She grips my forearm, and our eyes meet.

“I’m so sorry,” she says and then leaves.

Obviously, it wasn’t my first time around with cancer. I had found the lump in my breast 5 years earlier. The next year brought a mastectomy, followed by 4 months of chemotherapy, followed by 6 weeks of radiation. Practically speaking, that meant at least one, more often two or more medical appointments every week for a year. There was the gynecologist, and the breast surgeon, and the plastic surgeon, and the oncologist, and the radiation oncologist, and, of course, my primary care physician. It meant days and weeks of fatigue—weakness so debilitating I had to hold on to furniture to make my way across the room. It meant sores in my mouth and nausea and diarrhea and losing every hair on my head and face and inside my nose. Yet, despite all this, I was not prepared for this bleak prognosis.

Early Hopes for a Cure

After my first diagnosis, my church had assumed the task of praying for a cure. “We’ll fight this thing.” “God will give you the strength to beat it.” “We’re all supporting you—you’ll win your battle with cancer.”

I appreciated their support, but my God is a healer, and I called on my God for guidance. After all, I was a minister! How might I grow in compassion for other patients with cancer? How might I reach out to them and help them plot a course toward emotional healing? How would this experience further prepare me to serve others?

“I had never opened myself to the power for healing that dwells in each of us—healing in all its different forms.”

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The doctors had raised my hopes for a cure. The surgeon: “I’m sure we got it all. We had great margins!” The oncologist: “This treatment is the standard recommended today. Your heart is strong enough to handle it.” The radiation oncologist: “Just in case there are any stray cells floating around, the radiation will take care of them.” The primary care physician: “I’ve been getting lots of good reports about you. Right now, there is ‘no evidence of cancer!’” There was only minimal follow up: no blood tests, no scans, no doctor visits for a year at a time.

The doctors had also raised my doubts. If the surgeon had gotten it all, why did I need chemotherapy and radiation? Were they hiding something from me?

Preparing for a Reversal

So, for the next 2 years, I was prepared for a reversal. I was prepared to have some new symptom, some pain, something that would indicate the cancer was “back.” I was prepared to have a relapse every few years that could be corrected again with a round of chemotherapy and/or radiation.

I plotted a course of action, “just in case.” Coinciding with the beginning of my retirement, it was a good time to give away extra clothes, clean out boxes of old papers, donate accumulated knick-knacks to the church rummage sale, clear away some extra books. In case I became bedridden, I gathered materials for simple craft projects I could work on for entertainment. I grouped certain books together on my shelves in case I wanted to do some research projects. I considered rearranging my bedroom so someone could bring in a small TV if I grew too weak to do anything else. I mapped out my course based on my previous experience. I was prepared.

I braced myself for the attack, but none came. One year passed. Two years. I started to relax my guard. I put away the craft projects, let the dust grow on the books, filled the space for the TV with other things.

Debilitating Pain

Four years passed. Then, while caravanning cross-country with my roommate in a move from Maryland to Nebraska, the pain hit. Just some tingling in my gas-pedal leg. “Probably nothing,” I mused. Five days on the road turned the tingling into pain. Shooting pain down my leg. A dull, constant ache in my back. Over the counter painkillers didn’t touch it. A new nightmare had begun. “Not now! We’re starting a new life! We don’t have a place to live yet! I don’t have a doctor! Not now! I’m not prepared!”

I couldn’t sit. I couldn’t stand. I couldn’t lie down. Walking around relieved it some, but I couldn’t walk 24 hours a day. Get a doctor. Any doctor. Someone to prescribe painkillers and then figure out what it is. I must have injured my back carrying packed boxes for the move.

Then came the parade of new doctors and tests: primary care physician, physical therapist, orthopedic surgeon, x-rays, CT scan, MRI. Then, the verdict. The cancer was back.

The grave look on my primary care physician’s face told me it was bad. An equally somber face on the orthopedic surgeon the next day reinforced it. He tiptoed around it a bit, hoping the primary care physician had given me the news. A few days later, I was off to see the oncologist.

The Power for Healing

Where was my healer God in that new diagnosis? I had plotted a course the last time, and this was definitely not a part of it. A death sentence was not one of my compass points. Where was the guidance I had prayed for? Why wasn’t God following the course I had laid out?

No flash of lightning. No roll of thunder. Just stunned silence as we waited for the nurse. She came too quickly for us to recover and absorb her instructions, too slowly as we sat in agony. Then in a haze, go down the hall and turn left. Follow the signs to the lab for a blood draw. They were waiting, they were prepared. I went home and prepared to die.

I had long conversations with my God. Sometimes raging, sometimes sobbing, sometimes puzzling. Then, one day, understanding: I had never asked for healing.

“One thing is clear—I need to welcome the opportunities as they come. Because if I know anything, there is something or someone plotting my course, and it isn’t me.”

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I had never opened myself to the power for healing that dwells in each of us—healing in all its different forms. Deep, deep inside each of our cells is a power, a presence that gives us life. I have come to believe that this spirit, this life principle, can connect with all the other spirits throughout the universe to unleash amazing power—power to bring about wholeness and goodness. And that spirit resides in every cell, including the cancer cells. Perhaps the cancer cells have just lost their bearings, gotten confused. Maybe they just need to be redirected with a new compass heading, but they require unique combinations of medical treatment, prayer, and positive imaging to find it.

Prepared to Die but Not Prepared to Live

In the end, it turned out I was prepared to die, but I wasn’t prepared to live. Of course, I expected more doctor appointments and tests and blood draws. I expected fatigue and other side effects caused by the drugs. And I was prepared to think about cancer every day: How will it limit my activities today? Can I make plans for a short trip 3 months from now or buy tickets to a play scheduled in 6 months? What will the end be like?

But I wasn’t prepared to feel better. I wasn’t prepared to hear that my blood tests showed I was “responding to treatment”—at the very least, the cancer was being held in check. I wasn’t prepared to gradually have more energy and the desire to think about the future. Nor was I prepared to embrace the often-tedious activities of daily living after 2 years of expecting to die any day. “No, no,” I reminded myself. “You can’t plan ahead. You can’t let your guard down again. You’ll just be so disappointed and unprepared.”

My expiration date has come and gone. I have made plans for a 2-week vacation in California in a few months. My oncologist is upbeat and positive. I have been asked to share my experience at a conference 10 months from now—that far ahead still makes me nervous. But gradually, the hope of a future is returning.

Every morning, I still wake up surprised I have another day ahead of me. But the question remains: How shall I use this time? Read? Travel? Connect with old friends? Can I return to active public ministry, at least part time?

One thing is clear—I need to welcome the opportunities as they come. Because if I know anything, there is something or someone plotting my course, and it isn’t me. 

Ms. Deak was commissioned as a Lay Pastoral Minister and spent her life serving the Catholic Church.She was born in Cincinnation December 20, 1948; she died in Omaha on Monday, January 15, 2024.