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Excerpt from “The Myeloma Survival Guide"

Preface

by Jim Tamkin, MD
Internist, Endocrinologist, Myeloma Patient, 1942-2011

You’ve been mugged. They didn’t steal your wallet. They stole your life. And there’s nobody you can call to get it back.

You did nothing wrong. At least nothing either you or the medical world can figure out. Your number just came up.

Multiply the U.S. population times .000094. That’s your number. Thought of another way, your disease strikes one in 10,650.

You could have won a lottery beating odds like that. Instead you’re stuck with an incurable disease called myeloma.

Myeloma. As a name, it doesn’t even have the decency to be catchy.

Or famous. Nobody’s heard of it. When you tell people what’s wrong with you, they say, “Huh?”

That’s what you said when the doc first introduced it to you, isn’t it?

The other thing that’s really irritating is the unpredictability. There are at least half a dozen different ways myeloma can make you sick or bring you pain or give you some weird side effect like double vision or numb hands or back pain. It chooses one or all of them without warning. You shuttle from doctor to doctor for help. Sometimes it’s worth it. Sometimes not.

I’m pretty sure that the moment of your diagnosis was unlike any experience before or since. When you heard, “I’m terribly sorry to tell you…” the shock hit like a ton of bricks. You felt like you’d fallen into a dark, lonely place with nothing but questions and fears. Abandoned. Vulnerable.

I call it, “no man’s land”.

If you haven’t realized it yet, please know that soon, out of this confusion, darkness and fear, sanity will reappear. Yes, you have cancer. Yes, the situation is bad. But you have company. There are lifeguards on duty and ways for you to get to safety.

All sorts of help is coming, including people who intend to do things for you that you didn’t know needed doing and may not be thrilled about.

Over 100,000 Americans – like me – have been plunged into this awful illness ahead of you and are still here. A lot’s going on in research. We’ve benefited, and so will you.

This sharing of life with an obscure incurable illness is no five-star accommodation. But the assembled experts in these pages offer you the best available ways to maximize damage control and – perhaps – to extend life.

Hang in and hold on.