Living Well Beyond Breast Cancer: A Survivor's Guide for When Treatment Ends and the Rest of Your Life Begins

Read an Excerpt

CHAPTER ONE  
Over, Not Over    

I never forget. Cancer has become part of my consciousness, part of my society. With every cancer death, my heart turns over. I'm always amazed at how other people take their lives for granted, as if they'll live forever.  

I became assertive, someone I'd never been. I had a new voice. I said whatever I felt, like a cranky old lady. I knew nobody would stop me. I took my husband to an auction, my first post-treatment outing; I bought a few things, and he asked, "What areyou going to do with this junk?" I exploded—I just couldn't help myself: "You should be thanking God I'm interested in something again!"  

Right after treatment I felt very old, and lost, like I was looking into my grave. I got help, and it took a while, but I came around to feeling reborn, reinvented.    

****

First Things First  

It's over. Treatment, that is. You've survived the initial ordeal. Now what? No one hands you an instruction manual as you go from under treatment to beyond treatment. From Geralyn Lucas' book Why I Wore Lipstick:    

I make a list of everything I want to do. Should I quit my job, leave my husband, travel the world? I decide that maybe the most courageous thing I can do is to try to return to my regular life, with the knowledge that there is nothing regular about it. Since everything has changed, how could we remain the same?    

Maybe it's been two weeks, maybe two years, maybe twenty. But no matter how little or how much time has passed, the breast cancer experience is never completely over. Active issues, leftover concerns, and reminders can dog you every day or pop up just once in a while.  

When it's all over, just when you think you should be celebrating this huge accomplishment, you may feel worse than you did during treatment. How confusing and disorienting. It starts to make sense when you realize that all parts of your life have beentouched by the breast cancer experience. It may have taken over your life: bills, taxes, job, vacation, housework, and even children were put on hold.  

Now, with the end of treatment, you have to adjust back to normal. But is that really possible? The fact is, life changes after breast cancer treatment. Normal will never look and feel exactly the same. The only thing you can do is to go forward with therest of your life, one step at a time. You have to find and create your new normal. Many of you speak of how changed you are, almost renewed. This is my hope for each of you as you read my book: a chance to renew your life, one that brings you comfort, meaning, joy, fun, and hope.  

Throughout this book, I will help you understand the challenges and identify the solutions to help you live well beyond breast cancer. We'll start by looking at the issues you'll begin facing immediately after treatment.    

Challenges  

You can cope with this new life. Countless women have done it and are doing it. When you feel as wobbly inside as a new toddler or as stiff and creaky as a little old lady, draw strength from these other survivors. They understand that your cheery frontis covering up the vulnerable, exhausted you. And unlike many others, they appreciate this new you. In time, you will, too.  

When chemo is all over, the supportive care is over too. You're worn down by the accumulated side effects of all your treatments with nearly no pick-me-ups. That's when many of my patients tell me they barely feel as if they're among the living.    

Separation Anxiety  

After months or more of concentrated attention on you, your illness, and your therapy, you come to that moment when the days mapped out for you by hour and procedure come to an end. Many of my patients felt thrown into an emotional limbo: "'Come back in three months,' the doctor said. I felt like I was dumped, and I was so frightened," Janet recalled.  

Your health care team provided emotional support you may not have fully appreciated when so many things were happening to you at once—and at the end of your whirlwind treatment experience, you suddenly miss it. "I felt more scared after treatment wasover than I did before it started," said Gena. "During treatment I had peace." The scheduled routine and plan of attack were very comforting, and now they're gone. "When treatment ended, I didn't know what to do with myself," Christy recalled.  

With the end of treatment, your family and friends generally conclude the disease is beaten and done with. There's usually a shower of congratulations and celebrations. But you don't feel like yourself. You're still feeling disoriented and conflicted: profound relief and exhilaration mixed with uncertainty and forced enthusiasm. "I dreaded going to my own end-of-treatment party," one woman said. You're expected to feel great and back to normal and ready to get on with your life, but instead you feel lost. Separation anxiety takes on new meaning.    

Lingering Concerns  

As you move forward, a string of troubling questions can pollute your peace of mind:  

*What do I do now?  
*Where's my support?  
*Can I really get along without my doctors and nurses?  
*When do I get to see my doctor again?  
*Now that I don't see my doctors every day or every week, how do I get all my questions answered?  
*What about that new treatment that I just heard about on TV—does it apply to me? 

Flooded with these kinds of questions, you can feel fearful and insecure—making you wonder: Can I ever handle my life on my own again?    

Cancer Worry  

Even if you've been discharged by your doctors, there's likely still that cancer worry in a corner of your mind: "Every time something hurts or I get sick, I think the cancer has come back."  

You may also fear that the cancer might grow back because you are no longer doing anything active to keep it away. Annamarie's coping mechanism was ceaseless activity: "I got depressed . . . cancer was still on my mind twenty-four hours a day. I started looking for things I could do, things I still had to decide about, like diet, exercise, tamoxifen, anything I could possibly do to avoid recurrence." You may also worry whether the treatment really worked, whether you're fit to be discharged.  

Cancer worry is something you must learn to manage and live with. "Like a whale that moves into your living room" is how one patient described her lingering fears of breast cancer. "Over time, the whale gets smaller, but it never quite goes away completely. A tenant you can't get rid of. Maybe it gets down to the size of a magazine rack. Once in a while you bump into it, and sometimes it swells up into your face again, like when you have a mammogram and they call you back for extra views."  

Cancer worry dogs most of the people I take care of—a little or a lot. They carry it with them indefinitely, even as year after year proves them disease-free. Over time, the burden gradually gets processed, loosens its grip, and gets put in its place.