Hoping for More

Having Cancer, Talking Faith, and Accepting Grace

Thompson

• Publisher: Cascade Books
• Year: 2012
• ISBN:
  9781621892052
• Topic: Théologie et religion
• Subtopic: Religion

We tend to use words like miracle and mystery in the context of serendipity. In this frank and eloquent account of life transformed by cancer, Deanna Thompson explores these articles of faith as they are also wont to appear--on the hard edges of hope and the dark side of joy. --Krista Tippett, from the ForewordHoping for More is a story of a young religion professor with a stage IV cancer diagnosis and a lousy prognosis for the future. Amid the grief and the grace of her fractured life, this theologian--who is also a wife, mother, daughter, sister, and friend--searches for words adequate to express her faltering faith. More Anne Lamott meets Harold Kushner than the teller of a pious, God-saved-me-from-cancer tale, Thompson unpacks the messy realities that arise when faith and suffering collide. Told in shimmering prose, Hoping for More takes readers on an unsentimental journey through the valley of the shadow of cancer--beyond the predictable parameters of prayer, the church, even belief in life after death. What emerges is a novel approach to talking faith and accepting grace when hope is all you've got.

ten

The Trouble with Miracles

Spring settled in to Minnesota. I was finally sleeping. My back was growing stronger. Descending cancer markers testified to the Tamoxifen’s efficacy in slowing the cancer in my blood. Soon I would undergo more tests to show us whether the osteoporosis drug was doing the same thing for my bones.

Still I had breast cancer, and it was hard to forget about the tumor in my breast.

My husband was especially anxious to get the tumor out of my body. He didn’t come right out and say it, but it was clear he hoped I would get a mastectomy, maybe even have both breasts removed. He sought out opportunities to remind me that while his love for me includes my body, he would gladly trade my breasts for more time with the rest of me.

Other friends and family familiar with the breast cancer drill were anxious too. Some feared I was getting bad care; I had breast cancer; why weren’t doctors dealing with the breast cancer? Some urged me to find another oncologist, one who would get the tumor out—now.

During our April oncology appointment, my husband and I peppered the oncologist with questions about the breast tumor—now that I had regained some measure of strength, wasn’t it time to think about surgery?

The oncologist reminded us that it was soon time for The Big Tests—a breast MRI, a bone scan and CT scan. Before taking any more steps forward, she told us, we needed an update on what the cancer was doing in my body. After the tests, we could set up an appointment with the surgeon to talk about surgery.

Which meant I would likely need surgery over the summer. My husband smiled a relieved smile. He had predicted summer surgery during a recent conversation with me about summer vacation.

My passion for summer stems in part from love of our annual family vacation during the summer months. Before cancer, we had planned on a New England vacation for summer 2009. Our older daughter was born in Connecticut while I was in graduate school, but she hadn’t been back since we moved away when she was five weeks old. We had promised she would get there by age thirteen, and with her thirteenth birthday just weeks away, I raised the topic of summer vacation with my husband.

After I made my pitch for the importance of heading to New England this summer, my husband shook his head. “I bet you’ll need surgery this summer, and surgery is more important than any trip.” I feared he was right; still, the thought of giving up the best part of summer made me ache with sadness; hadn’t I given up enough?

The oncologist’s nod to summer surgery seemed to seal the deal of no summer trip. But before I resigned from yet another life-giving event, I wanted my oncologist’s opinion on the vacation idea. Did she think it irresponsible of us to travel out east when we had surgery to think about?

“You should definitely go on your trip,” the oncologist responded, with her trademark nod of the head. “With the treatment you’re on, it shouldn’t matter whether you have surgery in June or July. Go on vacation and have surgery when you get home.”

I grinned and clapped my hands while my husband pretended to smile, looking as if he had just heard a bad joke but that he needed to be polite about it. In my husband’s eyes, the oncologist ranks a little lower than God, so he knew he had just been overridden: what she says, we do.

But this was no time for me to gloat on my vacation victory; we had more questions for the oncologist. Even though I knew the surgeon would have strong opinions about what kind of surgery was best for me (indeed, we had already been treated to some of his opinions), I wanted to know where the oncologist stood on my upcoming surgery. Did she think I should have a lumpectomy? A mastectomy? Bilateral mastectomy? I laid the smorgasbord of options before her, urging her to pick out which one she thought best for me.

“There are advantages and disadvantages to both lumpectomies and mastectomies,” she responded even-handedly. And then, rather than narrowing the choices, she added another item to the buffet: “after The Big Tests, you might even decide to leave the tumor alone and not have any surgery at all.”

For those of us who know the drill, leaving the breast tumor alone seemed not just inconceivable but irresponsible. A quick glance at my husband confirmed that while he and I disagreed over the vacation-first-surgery-second scenario, we were in agreement on the tumor: it needed to come out.

We did not make any headway with the oncologist on the type of surgery, but we did manage to reign in the side effects of the monthly osteoporosis treatment. Following the suggestion of my physician in-laws, I took ibuprofen and anti-nausea meds before treatment and continued taking them every four-to-six hours for two days after treatment. Just as with my radiation treatments, taking drugs before the treatment blunted the force of the effects. For the three days following treatment I felt mildly ill but was able to stay out of bed while the sun was up. This was a huge relief. If low-grade nausea was as bad as it got, maybe I could endure twenty more months of treatment.

As my back became less of a daily concern, I grew increasingly preoccupied with the likelihood of breast surgery. I felt overwhelmed with the choices: how would I decide about what kind of surgery to have?

I asked my mom her opinion. Having had a mastectomy almost twenty years ago, she was unequivocal: “I wish I had had both breasts removed,” she told me. From the challenge of finding prostheses to match her remaining breast to the anxiety surrounding every subsequent mammogram, my mom regrets not being able to choose a bilateral mastectomy.

I could see my mom’s point about the bilateral mastectomy. At the same time I had difficulty imagining myself making such a choice.

I was finally ready to do some research. I read books on breast cancer, lingering over the sections on lumpectomies and mastectomies. As I digested the stories and the statistics, I found myself haunted by the negatives of each procedure. A lumpectomy would get me seven more weeks of radiation. A single mastectomy would lead to the challenge of matching a fake breast to the real one. Bilateral mastectomies have become increasingly popular in recent years, but taking a healthy breast along with the cancerous is stilled deemed a “radical” choice. With a mastectomy, I would also have lymph nodes removed from my arm. Reading detailed accounts of post-mastectomy problems with swelling and possible infections led to more sleepless nights.

Still there was more. If I had a mastectomy, I would need to decide whether or not to have reconstructive surgery, to go with a prosthetic, or to go with nothing at all.

The more I read, the more disoriented I became. Yet I knew that tens of thousands of women have had lumpectomies and mastectomies and many of them are living full lives today. Why was this decision so paralyzing for me?

Around this time a woman from our church who herself had had a bilateral mastectomy invited me to coffee. When we met, she walked me through her own diagnosis of stage III breast cancer and the decision-making process that led to the mastectomy. She told me of her conversations with other breast cancer survivors, and how their stories impacted her decision to have a bilateral mastectomy without reconstruction. Five years out from the diagnosis, she was delighted to report being cancer free and told me she shared her story with me just as others had shared with her, hoping her journey with breast cancer could be instructive for me. She even offered to show me her breast-less chest, just as before her own surgery, another woman from our church had done the same for her.

This was my first experience with the sisterhood of breast cancer survivors. This woman’s initiative in meeting with me—and even offering me a view of her chest—left me speechless. I stumbled through an expression of appreciation for her willingness to share so much with me.

Unfortunately, the more I learned the more unsure of my own path I became.

Why was this so hard?

Against my husband’s better judgment, I decided to give the cancer counselor one more try. I wanted to talk through surgery options and hear her thoughts on why I seemed unable to achieve clarity on what kind of surgery I should have. I was frustrated with my apparent vanity: here I was, a stage IV cancer patient with a lousy prognosis for living and I didn’t think I could bear to lose a breast or two?

“Losing a breast is a traumatic affair,” the counselor observed. “You’ve been through a significant amount of trauma already. You need to consider how much trauma you can handle at one time. Remember: you can always decide later on to have a bilateral mastectomy, but once you have one you can’t go back.”

I felt lighter hearing those words. Reframing the choice in terms of the amount of trauma I could endure opened up new ways to consider what I was facing. Perhaps my resistance to a mastectomy did not stem from wanting to wear tank tops over the summer; rather it could be that I had met my trauma-quotient for the time being. Maybe I could start small—a lumpectomy—and keep my options open.

While we were still on the topic of breasts, the counselor asked whether I planned to get tested for the breast cancer gene. I told her that my oncologist seemed supportive of the idea but that it wasn’t part of the immediate focus of halting the spread of the cancer. I relayed to her my own concerns about the test; knowing I had the gene had ramifications not just for me but also for my daughters, my mother, my brother and his family. I was dubious about what the genetic test would get me other than confirming my fears about what I may have passed on to my kids.

The counselor wasn’t as insistent as the surgeon had been about getting tested, but she did tell me that knowing whether I had the gene could help me deal with the choice of what to do with the tumor in my breasts.

I left the cancer counselor ready to think more about the genetic test.

I did more research. I learned that recommendations for bilateral mastectomies increase with a positive test for the gene. More consultation with my sister- and brother-in-law and my walking friend who had, of course, researched the subject thoroughly, led to the following conclusion: I wanted to be tested for the gene and find out I didn’t have it.

Of course it might not be that easy. But I was ready to take the first step toward testing: set up a meeting with a genetic counselor.

Prior to our meeting with the counselor, I had to complete an extensive family health history, not just about breast cancer, but also about health issues of many members of my extended family. My mother, aunt, and cousin, all of whom are breast cancer survivors, completed special forms detailing the type of breast cancer, the location and size of the tumor, and their current state of health.

The health history forms were accompanied by a letter that concluded with this warning: given the high cost of the test and the small percentage of people who carry the gene, patients who meet with the genetic counselor should be prepared for her to counsel against getting tested.

The day of my appointment, the genetic counselor was meeting patients in her office in the Gynecologic Oncology Clinic. As my husband and I waited apprehensively in the waiting room, a very pregnant, very bald woman emerged from one of the exam rooms. She cheerily bid farewell to the receptionist and smiled gingerly at our wide-eyed stares. After the door closed behind her, my husband and I exchanged solemn glances. To go through chemotherapy for cancer while pregnant? It never took more than a few minutes inside hospital walls before I was reminded that my new cancer-filled life could be even more dire than it was.

The genetic counselor was an effective combination of crisp, efficient, and empathetic. She had done this counseling thing for many years, and had developed graphs, charts, and visual aids to help her patients understand how genetics worked and what the test would reveal. It also was a relief to jump right in to talking about the test; she already had all my infor...

Table of contents

• Title Page
• Foreword
• Preface
• One: Fractured
• Two: Diagnosis
• Three: Stage IV
• Four: Grace amidst the Ruins
• Five: Losing Our Grip
• Six: Take this Cancer from Me
• Seven: Embraced by the Virtual Body of Christ
• Eight: Getting to Easter
• Nine: Having Cancer, Talking Cancer
• Ten: The Trouble with Miracles
• Eleven: Moving Forward, Standing Still
• Twelve: The Grace of Many Feet, Many Hands
• Thirteen: Hoping for More