Chapter Excerpt

Welcome to the club to which no one applies for membership. It has local chapters in every town and includes men and women, adults and children. There are no criteria for membership except lousy luck. I know you can't wait to cancel your membership and burn your carrying card. Neither could I.

You've Just Been Named CEO

When I first learned that I had cancer, I was sitting at my desk at work. It was the middle of a difficult day, and when I learned that Dr. Berman was calling I was pleased for the welcome diversion. I don't know why it didn't occur to me that it's not a good sign when your doctor calls you, but it was only when I heard the devastation in his sweet voice that I realized something was wrong. He told me that a routine test had yielded a troubling result and that I needed to go for more tests immediately. He'd already made the appointment. Within an hour I was at the medical lab, sitting in a tiny stall wearing nothing but an ancient cotton gown that was too thin, too short, and had too many openings. I'd even had to remove my earrings. When I heard "Rapkin!" I scooted past several nurses, doctors, and lab technicians, trying to keep whatever wasn't already showing under wraps.

It wouldn't be long before I learned that a big part of having a serious illness is waiting: waiting until your name is called, waiting for a prescription, waiting for a medicine to take effect, waiting for your hair to fall out, waiting for it to grow back.

One of the first side effects of cancer treatment begins within minutes of being diagnosed-before surgery, radiation, or chemo. In an instant, we go from being adults who are successfully raising families, meeting obligations, and holding down demanding jobs to being half-naked bodies waiting for instructions. At the very time we need to feel that we have power and control over our lives, we feel utterly powerless. That feeling of powerlessness is the first side effect. And it's important to eradicate it as early as possible. Believe it or not, I have good news for you: you may feel powerless, but you have a lot more power than you think.

The minute you were diagnosed, you became acting president and CEO of a major health concern: yours. Now you need to hire the best staff possible. You must assemble the most qualified team of experts you can find and put together an organization that is most likely to ensure the success of your business: the business of getting well and getting back to normal. This is big business. The stakes are high, and no one has more to gain or lose than you do.

Getting angry and shutting down and withdrawing will only make things worse. The Porrath Foundation for Cancer Patient Advocacy has found that patients who are the most proactive and informed-in other words, those who become CEOs of their cancer-have the best results and quality of life. The minute you were diagnosed, you became acting president and CEO of a major health concern: yours. The first thing to remember as chief executive officer is that you're the boss; your staff works for you. That means your physician works for you, as does your oncologist, surgeon, and everyone else involved in your pursuit of restored health. I'm not suggesting that you should be a difficult boss; far from it. Good bosses bring out the best in those who are on their team. And you'll never have a goal that's more important to achieve than you do now.

There may be times, however, when you think that perhaps you should hire a consultant for a second opinion or look into another course of treatment. This is no time to be a "pleaser." Bosses have to make tough choices, and those aren't always popular ones. You will have to make some difficult decisions; after all, the buck really does stop with you.

Like any tough job, yours will teach you lessons that will serve you well long after this difficult time, which, by the way, will pass. One important lesson I learned during my cancer treatment is that any day with hair is a good hair day.

It occurred to me one day that all those times I'd stood in front of the mirror searching for every gray hair I could find (and pulling out a few), I'd been wasting time and feeling unnecessarily upset. Yes, gray hair meant I was growing older. So what? Growing older means that we're still alive-the very thing I was battling for with everything I had.

How many times had I wished my hair was a different color or texture, straighter or curlier, thicker or thinner, when just having hair is such a blessing? Have you ever stopped to think about what an incredible entity hair is? When it gets wet, it takes almost no time to dry. It keeps you warm without making you hot. When the rest of your body is sweating on a hot day at the beach, chances are your head isn't, even though it's covered with thousands of strands of hair. Hair replaces itself, unlike any garments we wear. And it keeps on growing for a whole lifetime; I could go on.

There was a time when I thought about these things every day. Six years have passed since I was diagnosed, and I don't think about them much anymore. But I pray that I'll be reminded-frequently-that when push comes to shove, most things that we encounter day to day, as Richard Carlson said, are "the small stuff." What's left, like a day with hair, is what makes our day a good one.

I lost my hair just before Christmas 2000. By that time, the chemo was beginning to take its toll in other ways besides making me bald. My energy was diminishing, my coloring was somewhere between green and gray, and, much to my shock and additional dismay, the chemo was causing me to gain weight. I was not a happy camper.

There were bright spots as well as disappointments. Frequently I'd open the front door and find a bag of homemade goodies dropped off by a neighbor. Several evenings every week for months and months, my friend Marie would ring our doorbell, holding a delicious dinner for me and my husband between two pot holders. I hardly ever had to cook.

One day, my son-in-law's mother, Abbie, called me. She had recently battled cancer and knew all too well the challenges of going through treatment. As soon as I heard her voice, a new feeling came over me. For the first time since my diagnosis, I was talking with somebody who'd had cancer. It was like talking to a long-lost sister for the first time.

Abbie is one of the most practical, down-to-earth people I know, and shortly into our conversation it became clear that she had no time for self-pity or swapping sad stories. Instead, she said to me, "There are a few things you need to know that will help you a lot during your treatment. Your doctor and nurses won't tell you these things because they haven't experienced chemo, so they don't know. For example, make sure you always have tissues with you. Your nose is going to start running, and you're going to think that you're catching a cold or the flu. Don't worry; you're not. It isn't just the hair on your head that's gone. You'll be losing all your hair-including the hair in your nostrils. So there won't be anything to stop normal sinus drips."

What a relief that was. A nurse had already warned me about the danger of infections, and the thought of getting a cold or the fl u was as frightening as the prospect of cancer had been before I actually got it. If it hadn't been for Abbie, I'd never have learned about "drippy nose syndrome," and I'd have worried needlessly about yet another lurking threat to my health.

Since then, whenever I meet people who have just been diagnosed and will be having chemo, I tell them to carry tissues and why. Invariably, they're so grateful you'd think I had just given them a big present.

In the pages that follow are hints, tips, information, and tools that hundreds of people have learned firsthand- many by trial-and-error efforts-to make life a little less stressful. They'll help you navigate your way back to good health.

First Things First

When you're first diagnosed, there isn't actually a whole lot you can do. You're so busy going to doctors' appointments and taking medical tests that, for the most part, the only thing you have time to do is wait. However, there are some simple things you can do that will serve you well throughout your treatment and beyond.

1. Get a notebook and designate it as your cancer notebook. It's where you will write down all the information you need and things you might want to remember. Take the notebook with you everywhere; it will become a treasured possession. Buy yourself a pretty one-you'll be seeing a lot of it. The first things to write down are:

   o Insurance information, including the insurer's tollfree number

   o Telephone numbers and addresses of doctors, hospitals, labs, the pharmacy, and anyone else you'll be calling over the course of your treatment

   o Medications you regularly take for other conditions (doctors will want to know about them)

   o Questions you want to ask your doctor

2. Make a cancer file. Start keeping copies of all your medical records and test reports, which you'll have to ask for. You will need them when you get a second opinion. Even if you choose not to get a second opinion, you will need to keep complete files of your medical treatment from now on for everything from insurance claims to income tax deductions. Your doctor will charge a copying fee, as the physical records are legally his property.
3. Keep notepads and pens at your bedside and around the house so you can write down questions as they come to mind. Then enter them in your cancer notebook for your next appointment.
4. Get a copy of your health insurance policy from your and/or your spouse's human resources department. Find out exactly what is covered.
5. Keep a log of all conversations and correspondence with insurers, including dates, names, and outcomes.
6. If possible, delegate the record keeping for your insurance claims to someone else. This ongoing job is more demanding than it sounds. Unless you enjoy this sort of work, try not to do it yourself.
7. Keep copies of every form that you fill out and every document that you receive. Don't throw anything away.
8. Keep a daily calendar solely dedicated to recording all cancer-related events and expenses. Be sure to add things like wigs, prostheses, meals, transportation (including gas and parking), and lodging expenses. Many things will be tax deductible if they're not covered by insurance. Save all your receipts. The IRS can tell you exactly what is tax-deductible (www.irs.gov; 800-829-1040).
9. File all bills, receipts, and canceled checks.

Hurry Up and Wait

In the movies, when somebody is diagnosed with cancer, the medical team springs into action immediately; the patient is whisked off to the hospital, and the whirlwind of treatment begins so quickly that somebody usually has to bring a robe and slippers from home. The medical team is all on board from the get-go, and they work together like a well-oiled machine.

In the real world, on the other hand, things don't happen nearly that quickly. More often, the scene looks something like this. A test comes back to your doctor with abnormal (atypical) results, so he orders more tests. It may take a few days to schedule the tests, and then a few more days-maybe even a week-to get the results. Because there are often several types of a single kind of cancer (for example, there are more than twenty-five different types of breast cancer), it can take even more tests (and waiting) to pin down the exact diagnosis.

Many people, including me, say that this phase is one of the most difficult parts of their whole cancer experience. That may sound strange, but it's really true: Not knowing is one of the hardest places to be. Once we know where we are, we can start making decisions about where we want to go and how we will get there.

So try to take some comfort in knowing that right now you're accomplishing some of the hardest work you'll have to do during this entire process. And, ask your doctor how long it will take for all the results to come in and when you can expect to learn the final diagnosis. Typically it takes from one to two weeks. So much for the movies.

Breaking the News

Telling your loved ones, friends, and colleagues that you have cancer is one of the first difficult things you'll have to do. The Porrath Foundation for Cancer Patient Advocacy (www.porrathfoundation.org) offers helpful guidelines to help you break the news.

For example, when you tell your friends, prepare them a little by saying something like "Something important has come up that I need to tell you about. What's a good time for us to talk?" Be sure to find a time and place where you won't be interrupted. Go into as much or as little detail as you want. And don't feel that you need to keep a stiff upper lip or underplay the facts. Caretaker that I am, I often found myself trying to protect those I was telling from getting too upset by the news. What's wrong with that picture?

Remember, too, that there's no good time to deliver or receive bad news. The people who care about you want to be told sooner rather than later. Some friends of mine were very upset with me because they felt I hadn't told them soon enough. They wanted to be there for me from the start, helping me and praying for me.

Porrath also recommends that you write a script for breaking the news. You can prepare a friend by saying something like "I've been feeling under the weather lately so I went to see the doctor. The tests revealed a malignancy. So I'm exploring my options now."

Again, tell people as much or as little as you're comfortable with. The important thing is that you're allowing those who care about you to help sustain your body and spirit, just as marathoners need the support of those who stand along the sidelines, cheering them on or handing out water, to help them cross the finish line.

Choosing Your Oncologist

Once your diagnosis has been finalized, it will be time to choose an oncologist. This is where being CEO of your health really starts to come into play. You're embarking on one of the most important parts of your job: putting together your primary medical team. This consists of your primary physician, surgeon, oncologist, oncology nurse, radiation technician, and your oncology social worker.

It's absolutely crucial that you have complete confidence in the team you hire. They will help make your fight for survival a success. Your doctor will refer you to at least one oncologist. Make sure that you learn as much from the oncologist as you can. He will review your diagnosis, provide treatment options, and make a recommendation for your treatment. (Note: I refer to physicians as "he" throughout this book solely for the purpose of ease in reading. Obviously, there are many excellent female physicians.)

Choosing your oncologist is one of the most important decisions you'll ever make. Take enough time to make the best choice you possibly can. Don't let anyone hurry you unless you're told that time is of the essence. And most of the time, that isn't the case. The general consensus in the medical community is that in most cases it's well worth the time it will take for you to decide whom you'll hire.

We tend to assume that doctors possess all the qualities necessary to do a good job. In fact, the only thing their medical degrees indicate is that they're smart. That's a great start. But it's up to you, the CEO, to decide which of your candidates possess all the necessary requirements to do the job well. Those qualities include responsiveness to questions, no matter how many questions you have or how silly or trivial you may fear they are. This is cancer we're talking about, and your life is what's at stake.

The rule of thumb I recommend is to ask yourself one question: Does this oncologist treat you as well as you believe he'd treat his own spouse or child? If you suspect the answer is no, that's a good sign that this candidate isn't the one to hire.

You and your oncologist are going to have a long-term relationship-as in a lifetime. So you'd better be sure that you have confidence in him and feel some rapport. You're not looking for a friend, but you do need to have a sense that this person understands you, will take your questions and concerns seriously, and will take the time to make sure you understand what's going on. If you're interviewing an oncologist who obviously is pressed for time and makes you feel that you need to hurry up and leave, then do not hire that one. This is your first encounter; chances are you're both on your best behavior. If this is what you're getting now, trust me: it's not going to get better.

Get a second opinion. Get a second opinion. GET A SECOND OPINION. This cannot be stressed enough. Why? For two critical reasons. First, you may have to choose from a variety of possible courses of treatment: chemo, radiation, surgery, hormone therapy, or perhaps a combination. A second opinion will either confirm the course of treatment that was first recommended or propose a different option. Second, you can compare the confidence/comfort levels you feel with each oncologist you're interviewing (usually this is called a "consultation," but "interview" is much more accurate). Remember, this relationship is going to last for the rest of your life. Even after you're in remission, you'll always have follow-up appointments with your oncologist.

Oncologists expect you to get a second opinion. Any job candidate knows that he or she isn't the only applicant being interviewed. One sign of a good oncologist is if he suggests that you get a second opinion. In fact, if he doesn't, chances are he's not the one for you. Besides, most insurance companies cover second opinions. You know it's a good idea if they're willing to pay for one!

It's generally agreed that with the exception of extremely rare cancers or those that are exceptionally difficult to treat, two opinions are enough for you to decide what course of treatment (or protocol) you should embark on. At a certain point, too many options may just make you unnecessarily confused or anxious. Plus, for most cancers, there are one or two widely followed protocols anyway.

But every person is different, and if you feel that you need another opinion, get it. It's your life-literally. Do whatever you need to be satisfied with the oncologist you hire.

© 2007 by Michelle Rapkin