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Winning Against Cancer

March 8, 2010

We are a nation of cancer phobes. For some of us, the fear of that dreaded disease rests somewhere in the back of our minds. For others, the fantasies never go away and people are jumpy enough to discover a new symptom every day. I had colon cancer twice and never had given the big C. a thought. When the diagnosis comes, instinct takes over. There is no time to ruminate. You have to move quickly.

Some crawl under the bed and assume fetal position. My friend Jon Alter went the other way a few years ago when he was diagnosed with a form of cancer he knew little about. Non-Hodgkin’s lymphoma is more dangerous than plain old, run of the mill lymphoma. Both used to be automatic killers but have morphed into chronic illness status.

These cancers cannot be cured, but there is at least a fifty percent, five year survival rate. Not great, but better than it used to be. Jonathan Alter was diagnosed with non-Hodgkin’s lymphoma in 2004 and lived to write about it in Newsweek, where he is a columnist.

Jonathan is a journalist and it showed when cancer came calling. The man knows how to ask questions and learn what he feels he has to know. All of us need to do that. Too many hang back and do what they are told. Not everybody is as self-assured or a quick study like him.

Jonathan more or less co-directed his care. He made final decisions on the therapies of choice and where in the U.S. he would go for treatment. In short, he took responsibility for charting his course.

The Newsweek editor and columnist did so in consultation with the best specialists around, but he knew he had to be part of the solution. The more patients participate in decision making, the better the outcomes.

Not everyone has the skill or temperament to be so aggressive. Patient passivity is common and very disconcerting. We show more care and do more checking when we purchase consumer items than in choosing our doctors. Apparently cars and TVs are more important to us than our health.

We just throw ourselves into a doctor’s hands and instruct him or her to cure us. No questions asked. Frequently it is a referral, which means we probably do not know the person. Do we shop around? No. One doc tells us to go to another doc, and we obediently do it.

A doctor tells us to jump, and we do not ask why but rather how high? I do not get it. I know a cancer patient in the Midwest who was frustrated because he was offered too many options. He was angry his doctor did not simply tell him what to do.

What is wrong with this picture?

You learn a lot about yourself with a cancer diagnosis. Are you going to dissolve and be mopped off the floor like spilt milk? Rising up and locking horns with the enemy is less a critical tactic for survival.

A patient cannot be dissatisfied with the doctor but sit back and just follow orders.

Perhaps patients hang back passively for a reason. There is a straight-forward question that needs to be answered. Are patients intimidated, even afraid of their doctors?

Patients often don’t know when to speak or not be heard.

Doctors are not necessarily the most approachable people on the planet. Do you think your doctor wants to hear your opinion about what should be done? Add your comments to this discussion in the Chronic Disease & Disability Exchange.

Chronic Illness 101

March 1, 2010

Chronic illnesses suck. They cannot be cured. They can be treated many times, and the sick can live a long time, frequently with a highly compromised quality of life. For the chronically healthy who may not get it or want to, here is what you need to understand the chronic illness experience.

The word to use is “chronicity.” Don’t look for it in any dictionary. It is the creation of Jennifer Jaff who we will interview at a later date. Jennifer lives with both Crohn’s Disease and Gastroparesis, both painful diseases. Jennifer is an expert in chronic illness.

Chronicity is almost a state of suspended animation. We may be in remission now. How long will that last and how bad will we become? We may have a good day, but we wait for the other shoe to drop. I feel there is no stability to my health as I have both Multiple Sclerosis and Colon Cancer.

We need flexibility in our lives, in our jobs and other obligations. But people do not get that and quickly become impatient with us. The system is not meant to accommodate the chronically ill. We exist outside the frame work of how the world works.

The system is set up to handle sick people who get better or die. Lines are pretty clear. The problem here is that none of us gets better and only some of us die. So we find ourselves functioning as square pegs trying to wedge ourselves into round holes. Often it is not a good fit, and we don’t get much help pushing.

Then there is the But you look so good syndrome. Even the most serious chronic conditions can be invisible. Others do not see them, and if you look okay, you must be okay. We live in a culture that worships beauty and physical perfection. People are not comfortable with illnesses or disability. They want us to be healthy.

What is odd about all of this is the staggering numbers of people in this country who live every day with one or two chronic illnesses. Current and credible figures now put the number at about 137 million and growing as we age. That is perilously close to half the population. All of us are touched by a chronic illness. If we do not have one, a member of our family or a friend does. There is no escape, but our eyes are shut tight.

I hold the government responsible for the paucity of serious research on these conditions. The NIH budget is frozen at $29 billion as we spend many multiples of that fighting wars overseas. Toxins and microbes and germs that attack in the night to kill or injure are terrorists by my definition.

And I fault the politicians for allowing the debate on healthcare reform to disintegrate into arguments about numbers without putting a human face on the issue. This is you and me, friends. Chronic illnesses and extended life are what is breaking the system.

Wake up.