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FINDING THE LIGHT IN CANCER'S SHADOW
By Lynn Eib Tyndale House Publishers, Inc.
Copyright © 2006
All right reserved.
Chapter One So, How Do I Know When I'm a Survivor?
This is a not a book for B.C. (Before Cancer). And it's not really a book for A.D. (After Diagnosis). It's a book for A.C.T. (After Cancer Treatment).
It's hope for life after cancer treatment. You or your loved one has survived surgery or chemotherapy or radiation or maybe all three. What do you do now?
You may have been told that the cancer is gone or in remission. You may know what the specific odds are that it will or won't recur. You may even be dealing with a kind of cancer that doctors say probably will come back.
So when do you know that you or your loved one is a survivor?
I was diagnosed June 26, 1990, with stage III colon cancer. I still am cancer-free and count myself as a very blessed survivor. Even if the cancer had returned, I would still count myself as a survivor because I agree with the National Coalition for Cancer Survivorship when it labels cancer patients as survivors "from the moment of diagnosis and for the balance of life."
I didn't always think that way.
I used to think that you had to live five years after a diagnosis to be called a cancer survivor.
I remember going in for my five-year oncology checkup in the summer of 1995 (before I started working in Marc's office) and gleefully announcingto Marc that I wouldn't be seeing him professionally anymore. (I'm not quite sure how I got that notion, but I hear many others say the same kind of thing. We've probably made that association because statisticians often give data on five-year survival rates for different types of cancer.)
"Where did you get that idea?" Marc responded.
"It's five years; I'm cured!" I told him, surprised that he didn't realize it was such a momentous day.
"Well, the chance the cancer will return has diminished greatly, but you still need to be checked for the rest of your life," Marc soberly explained.
Talk about bursting someone's bubble!
I waited five years to be proclaimed a survivor and there was going to be no such official announcement.
Thankfully, a short time after that day, I read the above-mentioned survivorship definition from the National Coalition for Cancer Survivorship and proclaimed myself a survivor. (The National Cancer Institute Office of Cancer Survivorship also says that "an individual is considered a cancer survivor from the time of diagnosis through the balance of his or her life.")
So I hope you're not waiting for some mythical five-year mark to earn the label of cancer survivor. If you have survived even one minute since diagnosis, you already are a survivor!
But this hard-earned label of cancer survivor brings with it a sobering reality: We have come face-to-face with a life-threatening disease. And as long as we wear that cancer survivor label, there will be checkups and blood tests and reminders that we are living in cancer's shadow. I believe that we can find the light even in cancer's dark shadow, but I don't believe it's a once-and-for-all experience that enables us to quickly move out from under this shadow. Rather it's something that we commit ourselves to continue doing for weeks, months, and usually years.
Did you ever sleep with a night-light when you were a little kid? (Maybe you still do as an adult-you don't have to tell me.) Our middle daughter, Bethany, had an insatiable need to sleep with a nightlight until she was about eight or nine. She needed that light to reassure her that there were no scary shadows in her bedroom. Her dependence was so strong that when she was a toddler, if the nightlight bulb burned out during the night, she would wake up crying. I never figured out how someone with her eyes closed could tell that the night-light wasn't on, but Bethany always could. We joked that she would need to take a night-light on her honeymoon, but eventually she learned to sleep in the dark.
I think cancer survivors are a lot like Bethany was as a little girl. We need constant reassurance that the dark shadows we see-or think we see-aren't going to get us. We want to know that our paranoia is normal, that our fears can be conquered, that it's okay to cry once in a while, and that there isn't any more black ice ahead.
We need to know the night-light is on.
The people you'll meet throughout this book are really quite average cancer survivors. They haven't won seven Tour de France races or accomplished another spectacular feat. They were all amazed when I said I wanted to interview them for this book, and most protested that they don't have it all together. And that's exactly why I picked them. They are real people with real feelings, and you'll be encouraged that if they can find the light, you can too. I met them all through my job as a patient advocate, and most also belong to my Cancer Prayer Support Group. Some have beaten the odds; others are planning for the future despite the odds. All have found a new appreciation for life.
* * *
One of these survivors is my friend Claude. According to statistics, he didn't have much of a chance to survive his cancer diagnosis. The survival statistics on lung cancer are pretty dismal-especially when the tumor is inoperable, which his was.
The grim news came around Memorial Day 2000. Claude had finally kicked a fifty-year addiction to cigarettes and was looking forward to retiring in a few years from his job with a large utilities firm. Like most of us, he was shocked to get the pathology report.
"I felt dead inside," Claude recalls. "I remember the first doctor who said 'lung cancer' to me-it was like he was talking and I could hear his words, but it was as if he were talking to someone else."
Claude, then sixty, looked and felt quite fine. But there it was in black-and-white. The walnut-sized tumor was "poorly differentiated" and too near the heart and aorta for surgery. He agreed to try some chemo and radiation in hopes of shrinking the tumor and buying more time.
"Three different doctors told me to expect to live a year-two years if the treatment went really well," Claude says. "There was no prognosis of a future. They advised me to get my affairs in order."
Claude found himself with extra time after his employer decided he was permanently disabled several months after his diagnosis-despite the fact that Claude had continued to work throughout his "pretty rough" treatments.
The decision turned out to be a blessing in disguise, Claude says, because it allowed him to "retire" three years early. Instead of working at his job, Claude became a full-time volunteer, participating in community-service projects, organizing ministries at his church, and even traveling to Russia with his wife for a two-week mission trip to share his culture and his faith in the Russian schools.
"My wife and I have had the freedom to come and go and enjoy the things we always wanted to do," Claude explains.
Despite being told initially that he didn't have long to live, Claude says he thought of himself "as a survivor from the very beginning."
He says that his confidence as a survivor was bolstered after a large group of friends gathered around him and prayed for him at his church the week after his diagnosis. He didn't hear an audible voice or see any flash in the sky, but several phrases kept going through his head even as a peace settled in his heart.
"The words I heard in my mind were: 'Trust Me. I am able. Nothing is too difficult for Me,'" Claude says. "I knew in the very depth of my being that God had touched me and I didn't have anything to worry about.
"I just began to walk as a healed man, a healthy man," he adds.
Claude says he moved ahead with his planned medical treatments because he believed God was going to use them to bring about his cure, even though doctors had told him they didn't think a cure was medically possible.
Four years later, his lung cancer has not returned, and Claude insists that his life after lung cancer is "better than my life before."
He credits "good doctors and the good Lord" for healing the lung cancer.
"I have gotten physically stronger day after day and have been spiritually strengthened too," he says. "I appreciate everything around me more every day."
Still, Claude admits that he feels "a little apprehension" at each checkup.
"I never walk in [my oncologist's] office that my blood pressure doesn't go up a little," he says with a laugh. "It's like another moment of truth is here."
* * *
My friend Blaine has had a few of his own moments of truth since his diagnosis of stage III esophageal cancer at the age of forty-two in March 2001.
Blaine is one of the healthiest-looking cancer patients I've ever met. He owns his own remodeling company and is an avid golfer. When diagnosed, he could scarcely believe he had cancer.
"I never knew anyone with cancer-I hardly knew what cancer was," he says.
Doctors decided to do neoadjuvant treatment-chemo and radiation before surgery-in hopes of greatly shrinking the tumor in his esophagus, which already had spread to the lymph nodes. Blaine had a continuous infusion pump implanted and got radiation every weekday while chemo pushed silently through his veins.
Many people with similar cancers are forced to get a feeding tube while receiving both chemo and radiation because swallowing can become very difficult. But a month after starting treatment, Blaine had lost only a few pounds and even sampled bowls of spicy beans at a chili cook-off at the nearby county fairgrounds.
In July the surgeon went in to remove the tumor-except there wasn't much of anything to remove. The treatment had worked so well that there was "only a small amount of residual disease," according to the surgeon's notes.
"When I woke up in intensive care, I knew I was a survivor," Blaine recalls.
The successful surgery increased his chances of a cure from about 30 percent to 70 percent, the surgeon told Blaine.
Given a second chance at life, Blaine and his wife, Becky, began to think more about their spiritual life together. "For fourteen years [of marriage] my wife and I discussed whether we should go to this church or that one, but we never did anything about it," Blaine explains. After the cancer diagnosis, they accepted a couple's invitation to a nearby church, became members, and even joined the choir just two months after Blaine's surgery.
Blaine still shakes his head in amazement as he considers how he, who never sang before his esophageal cancer, now looks forward to singing at his church. And despite the fact that every few months he has to have his throat dilated (a stretching procedure to keep it from becoming too tight), he even sings solos at his church. On the first Christmas Eve after his surgery, he sang "O Holy Night" and has sung a solo every year since on that sacred night. He even sings occasionally for our support group parties, and all who listen enjoy the heartfelt enthusiasm he conveys for each song's message.
Every time I read Psalm 40 I think of Blaine:
I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a NEW SONG to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord. PSALM 40:1-3 (emphasis mine)
Instead of dwelling under the shadow of cancer, Blaine has allowed God to put a new song in his heart.
* * *
Bill and Jakoba (or "Jake" as her friends call her) know a thing or two about being under the shadow of cancer-this husband and wife were diagnosed with cancer just six weeks apart.
Jake got the dreaded news first in February 2002 when she was diagnosed at the age of sixty with breast cancer that had spread to the lymph nodes. After surgery to remove the lump, the couple decided to keep their plans for a short Florida vacation the next month.
"My whole goal was to be her nurse and help her recuperate," Bill recalls. "But on March 18 the world changed a bit."
That's the day an episode of bleeding sent Bill, then sixty-one, to a Florida emergency room where doctors discovered a cancerous tumor in his colon.
Doctors wanted him to remain in the Sunshine State and have immediate surgery, but Bill wanted to get back to Pennsylvania for his wife's first scheduled chemo treatment.
"My focus wasn't on my cancer; it was on Jake," he says.
So they took a flight headed back home, even though the emergency-room doctor had predicted Bill would die in flight. He immediately saw a local surgeon and was operated on for stage III colorectal cancer.
They aren't the first husband-wife duo to have chemo together in our office, but they probably are the one with the most positive attitudes.
When they finished their respective treatments, both felt very optimistic that "we really beat this thing," Bill says. More than three years later, Jake continued to be cancer-free, but about a year after finishing treatment, Bill's routine blood work showed his CEA tumor marker (a blood test that may indicate a recurrence of colon cancer) was elevated, and subsequent scans indicated the cancer had spread to the liver.
The three of us talked in my office after they got the news. Both were quite shaken and had a big concern: In a few months Bill was running for an international position with the Lions Club, the world's largest service organization dedicated especially to helping the blind and visually impaired.
As we talked, Bill said he thought it probably would be best to turn down the nomination because the high-level position would require extensive traveling in and out of the country. They also were scheduled to leave in eleven days for a Lions Club meeting in Portland, Oregon, and decided to forgo that trip.
But in the ensuing days as they talked and prayed about their future, both felt a peace about Bill continuing to campaign and run for the office.
"I told her I was going to run-whatever happened [with the cancer] was going to happen, so why should I just sit back and wait for it?" Bill recalls.
"We talked it through," Jake adds, "and we decided we're not going to let this take over our lives."
And that is just how they've handled this big shadow. Bill started back on chemotherapy, but not long ago the couple returned from Detroit where Bill fulfilled a longtime dream and was elected to a two-year term as director of Lions Clubs International.
He admits the experience was a little tiring, but he managed to campaign from 5 a.m. to midnight most days! Bill and Jake's three grown children and spouses joined them in Detroit and celebrated together when their dad's election became official.
The family plans to meet in New Orleans and ride the Delta Queen paddleboat together when Bill completes his two-year term. Bill also scheduled speaking engagements as a Lions' director for at least eight states, as well as Canada, India, and Hong Kong-where he really hopes he can take a quick excursion to China and walk a little of the Great Wall.
And beyond the Great Wall, Bill has an even higher goal: to be alive in 2007 and see his wife cancer-free at her five-year mark.
That's how my friend Bill has faced living under the shadow of cancer-by seeing the disease as a curve in the road rather than a blockade.
"I'm conscious that I have it, but I don't worry about it," he says. "Although I know what's going on inside, I'm feeling well. I'm very fortunate because I have an agenda each day."
"We're very busy and we don't have time to think about it," Jake adds.
Bill acknowledges that the recurrence of the cancer has been harder to deal with than the initial diagnosis.
"You keep thinking and praying that the next treatment's going to work," he says. "If it doesn't, I look forward to a new treatment rather than concentrating on the old treatment not working."
He copes with these ups and downs by having faith in his doctor and by constant prayer.
"We don't wear our faith on our sleeves," he says, "but I trust that God is going to give me the ability to handle this new challenge. I don't actually pray so much for [my cancer] to be healed as I pray for the other people [I know with cancer] to be given some peace and comfort as they deal with their own cancer."
<%TOC%> Contents Acknowledgments....................ix
Excerpted from FINDING THE LIGHT IN CANCER'S SHADOW by Lynn Eib Copyright © 2006 by Lynn Eib. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Introduction: Sliding on Black Ice....................xi
1 So, How Do I Know When I'm a Survivor?....................1
2 Is Everyone as Paranoid as I Am?....................15
3 How Do I Turn Off That Voice of Fear?....................29
4 Do I Have to Go to Oz to Get Some Courage?....................41
5 How Do I Keep (or Get) a Sense of Humor?....................53
6 Do I Positively Have to Stay Positive?....................69
7 Isn't There a Faster Way to Wait?....................79
8 Can I Really Hear from God?....................91
9 Will Life Ever Be Normal Again?....................105
10 Will It Come Back?....................117
11 What If I Need a Miracle?....................127
12 Is God Really Bigger Than Cancer?....................137
13 Living under a Different Shadow....................151