As some of you know, a while ago my oncologist and surgeon, David McDermott and Drew Wagner, asked if I’d be willing to be videotaped talking about what I think about the Renal Tumor program they offer. Well, you know me – please don’t throw me in that briar patch! Besides, since I feel pretty strongly that I owe them my life, the least I can do is tell the story to a million people or so.

In a couple of shots you can see my wife Ginny. And, very sharp-eyed long-time Bostonians may be able to recognize that the unnamed fellow in those shots is Gary Gillis, former sportscaster for WHDH-TV. He’s the producer of this video.

More details about the Beth Israel Deaconess Renal Tumor Program are on their web site

(As I write this, the video player is behaving very balkily for me. I don’t know if it’s my computer or the Brightcove video server. I expect they’ll get it worked out.)

When you’re facing a harsh disease, use every tool at your disposal.

Cancer brings a hefty load of communication. Set up a support community and online journal at www.CaringBridge.org or www.CarePages.com. Each lets you post news updates 24/7, when you feel like it – even from inside my hospital, which had wireless! It saved hundreds of phone calls, hours of emails. Plus, web visitors wrote expressions of support in my “guestbook,” which were heartening. (They’re all captured in the book I mentioned yesterday.)

Find a community of your peers. Google your disease plus “support,” for instance “kidney cancer support”. For less common cancers, www.acor.org is best.

The Internet has truckloads of garbage; learn how to filter it and find the gold. The best way to do that is, again, through your peers, who rapidly debunk the junk.

Take care of the caregiver. Get relief for the people at home who give so much. Arrange some days off, with someone else covering; if neighbors bring dinner, accept it. Your caregivers might benefit from a support group of their peers; they may be experiencing loss, too: loss of their dreams, fear of losing their future, and more. Caregivers should be straight about their emotions, too, same as you.

Learn to advocate for yourself. Expect respect from doctors and nurses, and get second opinions whenever you want. If a doctor suggests you’d be better off not asking so many questions, get a different doctor.

You can learn a lot from the free e-book E-Patients: How They Can Help Us Heal Healthcare (PDF, wiki ). I didn’t read it until my adventure was mostly over, yet it took my breath away.

E-patients are empowered, engaged, equipped and enabled. When I got my cancer diagnosis, I became one fast – and I’d never heard the term. You can be one too.

So ends my list of things I wish I’d known from the outset. How about you? Does any of this help? What did I miss, that’s helped you?

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A parting thought:

I had no preparation at all – zero, zippo – for the life-threatening adventure I entered 19 months ago.  It seems like a lifetime ago; in a sense, it was.

As positive and activist as my perspective was, please be aware, I knew all along that I really might die soon. In a sense, it was like heading down a big “flume” ride at an amusement park, with no certain control over what was going to happen.  Yet I knew, even if I was going to die, I could still choose to be fully alive during the whole process.

That might seem odd, but think about this: If I’d clenched my teeth and fists, it wouldn’t have helped my cause at all, and might well have taken me out of the fight, mentally.

In a couple of posts here I’ve mentioned that the only question worth asking is, “What can I do that would make any difference?” My hope for each of you is that when a crisis arises in life, you’ll have the presence of mind to fully participate in your care.

Blessings on you and yours.

A positive attitude is good for your immune system. One nurse in my ACOR peer group wrote, “Patients who are engaged in their care and actively seek out knowledge and the best treatments automatically put themselves above the median.” If you’re looking for every way to improve your odds, think about that.

But it’s also important to be straight with yourself about how you feel, even when it’s not pretty. Face it: however you feel, that’s how you feel! Saying “I shouldn’t feel that way” creates a depleting struggle inside you, when you want all your resources to go into healing.

I’m not saying you should wallow and moan; that wouldn’t get you anywhere. But there were days when what I needed to say was, “I feel like crap!” I felt empowered because I could tell the truth to myself and others – and feeling empowered is good for your immune system, I’m certain.

Even when things look grim, you can choose how to view it. In my first few terrifying weeks, knowing that laughter has health benefits, I asked people to send me DVDs of Warner Brothers cartoons. When I told my doctor I was considering quitting my chorus he said, “You don’t want to start dropping life activities that you love. It sends the wrong message.” So I said “Okay, now my treatment is to laugh and sing!” Then he told me to gain weight, and sent me a diet on how to eat more calories: “Put real whipped cream on every dessert,” “Real butter – no more margarine,” etc. Tough duty!

So I told friends “If I ever write a book about this, I’ll call it ‘Laugh, Sing, and Eat Like a Pig.’” When my cancer journal reached the one-year mark, I published it online, with that title. You can read it here.

Statistical analysis is a vital part of good medical research. But it’s equally vital that patients and caregivers not get misleading impressions from the numbers they read.

First, realize that statistics apply to populations, not individuals. 32% of humans have blue eyes and 25% have brown, but that doesn’t mean that your two eyes are 32% blue and 25% brown – you’re an individual, not the population.

Second, many studies report “median survival time,” which can scare the pants off you. For my profile, median survival time was 24 weeks. This does not mean “they gave me 24 weeks to live.” The median is the middle person in a study, which tells you nothing about either the best or the worst cases. In my case, some people are still alive 13 years after the study was done.

The classic layman’s article on this is Stephen Jay Gould’s The Median Isn’t the Message. His cancer’s median survival time was 8 months; he lived 20 years.

As it happens, I was further thrown off by the fact that the study I found was done before any of today’s treatments existed. But without even knowing that, I did the right thing: I asked “What can I do to put myself in the group that did better than the median?”

I’d heard a lot about cancer in the news, and I’d known a few people who had it. But when it hit me, the only question that mattered was, am I going to die?

The answer was, maybe. My case was bad: researching my profile of symptoms, I read “Prognosis is grim” and “Outlook is bleak.” Later, I learned that the most current information isn’t on the best medical sites(!), because it takes 17 years for research to go from concept to funding to study to analysis to publication. Instead, the only reliable source I found was my peers on ACOR. I came to learn that when your butt is on the line, the most reliable advice comes from others whose butts are on the same line.

I learned that cancer is no longer a death sentence. That’s not to say it’s never fatal – a half million Americans a year do die of cancer. But most patients don’t.

I learned that there are numerous ways that having cancer doesn’t spell doom. Survival rates are markedly better than a generation ago, and increasingly cancer becomes a manageable chronic condition that you live with, similar to congestive heart disease or diabetes.

Face it: if you live long enough to die of something else first, you didn’t die of cancer! (Some people are discovered at autopsy to have had an unrelated cancer they never even knew about.) And some people have tumors that appear on their scans but never change, which suggests that the tumors might be dead – not the person.

I know, a cancer diagnosis is no picnic. But the only important question is, what do I do now?

Answer: get it in gear. Do everything in your power to find the best treatments. Start by finding a community of patients with your disease.

After a simple shoulder x-ray on January 2, 2007, I learned out of nowhere that something else had shown up in my lung. Ten days later we knew what it was: Stage IV kidney cancer that had spread throughout both lungs.

Suffice it to say that my view of life changed very rapidly. I googled my butt off, but the best information didn’t come from top-ranked medical sites – it came from a community of my peers: people with the same cancer as me, on www.ACOR.org.

In this series I’ll briefly cover the seven topics I wish someone had told me at the outset:

1. Cancer is no longer a death sentence.
2. Understanding the statistics you read
3. Creating a support community of your family and friends
4. Online resources – medical information and social resources
5. The importance of your attitude and feelings
6. Taking care of the caregiver, too
7. Advocating for your own care

Now that it’s mostly all over (I’m well again), #7 seems like the top-level lesson. But when I got the news, #1 and #2 were what I needed to hear first. That’s what I’ll write about next.