Be Your Own Advocate

"Can you make me better, Doc?"

When we're first diagnosed, that's the question many of us may find rising to the front of our minds - whether or not we ever voice it. We look to our doctors to be healers, to cure our illness, to make us better.

Few of us travel very far down Cancer Road before coming to realize there's a lot more to it than that. There's so much to learn about the disease and its treatments.

I can remember the hours I spent reading Elizabeth Adler's Living With Lymphoma: A Patient's Guide (still the most informative book I've found about the biochemistry of this disease). Suddenly I found myself reading, with great interest, all about the chemical components of human lymphatic fluid - a topic I never dreamed I'd have the least interest in. Having cancer changes that in a hurry!

Today my friend and fellow lymphoma survivor Betsy de Parry published an article, "Candid Cancer: An active role in your care matters." Reflecting on her experience as a long-term survivor, Betsy asks:

"So why not just tell the doctor to fix it? The short answer is that medicine has come much too far and become much too specialized for us to simply be passive participants. In many cases, there are treatment choices, and we can only make sound decisions if we understand them. And aside from cancer's physical impact, there are emotional, practical and day-to-day challenges that we need to face and address....

In fact, if there is one thing I've learned from all the survivors I've talked with over the years - survivors of many types of cancer - it's that many of them are healthy because they became their own best advocates and learned everything they could about all treatment options. Many were told they'd be 'lucky' to be alive in a few years. Others simply refused to accept the next recommended treatment and searched for different options. They talked with other survivors and got second or third or fourth opinions."

So, don't be shy. March into your doctor's office with a notebook in your hand, and demand all the time you need to get your questions answered. Bring a friend or family member if that will help you remember what's said. Four ears are better than two.

Don't be overly considerate of your doctor's ego. It's no insult to say you want a second opinion. Good oncologists are used to this. Those who bristle at the suggestion are the ones you need to watch out for.

Don't be passive. Let your doctor know you want to be a full participant in treatment decisions. Ask for full explanations of why one treatment may be better than another, and ask for time to consider the various options, if that's appropriate. Go to the library or onto reputable websites (like www.cancer.gov) to get the full story (or as much of it as your non-medical mind may be able to comprehend). There are lots and lots of good resources out there that seek to explain cancer so ordinary folks like us can understand it.

Jesus tells an odd little tale in Luke 18:1-8 that's often called the Parable of the Importunate Widow. That's an old-fashioned way of saying, "the Parable of the Pushy Broad." In the story, a poor widow is seeking justice from an unjust judge. He's a jaded bureaucrat who can't be bothered with shuffling case files from his inbox to his outbox any quicker than he absolutely has to. This widow, though, makes a pest of herself. She just keeps knocking on his door until he's obliged to rule on her case. Jesus ends by saying something to this effect: "If even a pushy broad like that can get some action out of a corrupt judge, won't our God of mercy pay even more attention to your prayers?" It's a word to the wise.

So, speak up for yourself. If you don't do it, who will?

Your doctor will respect you for it.

An "N" of 1

I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:

"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."

That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.

I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.

I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.

"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)

That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.

He intuitively understood what President Faust is talking about. He knew he was an "N of 1."

The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."

According to "N of 1" thinking, that's OK, too.

Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.

It's the art of living.

"If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast."

- Psalm 139:9-10

Not the Best Health-Care System

A few minutes ago, I happened to catch a few minutes of news coverage from the U.S. House of Representatives. Members of Congress were taking turns reading from the U.S. Constitution. This was the first time in history, the newscasters informed us, that the entire Constitution has been read aloud on the floor of Congress.

It took me back to my old Sunday School days. Our teacher used to ask us kids to take turns reading through a passage of scripture aloud, with each person reading a single verse.

Have we come to this? I know remarks have been made about the Tea Party movement treating the U.S. Constitution as a fundamentalist might treat the King James Version of the Bible, but when I saw it in action just now, the effect was chilling. John Calvin called the human race "a perpetual factory of idols." It would seem we've found ourselves a new one.

The U.S. Constitution is a remarkable historical achievement, and a model for democracies the world over. It is worthy of our respect and honor. But, to treat it as holy writ? I think there's a reason why this is the first time in history this stunt has ever been pulled: because previous generations - including the framers of the Constitution themselves - had better sense. I can imagine Ben Franklin rolling over in his grave right about now.

One commentator has estimated the cost to taxpayers of this little publicity stunt at $1.1 million.

Let's see, now... what does this story remind me of? Could it be when, in Nehemiah 8, Ezra the scribe reads the law to the people of Israel, freshly returned from exile to a ruined Jerusalem? Isn't it just a wee bit of hyperbole to imply that a mid-term change of party leadership in one of the two houses of Congress is a parallel situation of nationwide repentance from apostasy?

"And Nehemiah, who was the governor, and Ezra the priest and scribe, and the Levites who taught the people said to all the people, 'This day is holy to the Lord your God; do not mourn or weep.' For all the people wept when they heard the words of the law." (Nehemiah 8:8)

Oh, pull-eaze!

What really concerned me, though, was to hear the new Speaker of the House, John Boehner, lambasting the recently-enacted healthcare reform legislation and vowing to repeal it. I don't recall him ever mentioning the words "healthcare reform" without prefixing it with "job-killing." I lost track of the number of times he said "job-killing healthcare reform."

Is that all they've got? Just take their talking-point and repeat it again and again, ad nauseam? I don't recall potential loss of jobs being a major debating point when the legislation was first passed. Why didn't the opposition make a point of it the first time? Even if a significant number of jobs were to be lost because of this legislation - seriously doubtful, but let's grant the point for a moment - is preserving a modest number of jobs worth it, if most of working America continues to be just one medical crisis away from destitution?

Come to think about it, in making the job-loss argument, isn't Mr. Boehner conceding that the healthcare-reform legislation is, in fact, creating a system that's more cost-efficient than the one we've presently got? Wouldn't the elimination of a limited number of administrative-support jobs be, sadly, necessary, in order to accomplish the financial efficiencies that everyone agrees must be the goal if healthcare is to become affordable again?

Mr. Boehner, by the way, is the same man who, in the midst of a debate on tobacco-growers' subsidies in 1995, personally distributed campaign-contribution checks from tobacco lobbyists to his fellow members of Congress on the House floor.

Yes, he did. On the House floor. (He later apologized for it, explaining that it wasn't technically against House rules, then led a campaign to reform the House rules to prohibit what he'd just done. To protect the country from people like himself, I suppose.)

Mr. Boehner went on to repeat another phrase endlessly: "the best healthcare system in the world" - as in "they are trying to take down the best healthcare system in the world."

Mr. Boehner can be admired, perhaps, for his patriotism, but it's blind patriotism when it ignores the facts. The last time the World Health Organization published a healthcare-ratings table of the nations of the world, in 2000, the United States ranked 37th. France was number 1 - something even the conservative magazine Business Week admitted, in 2007, is a pretty impressive achievement.

In claiming the U.S. healthcare SYSTEM is the world's best, our new Speaker of the House is at best mistaken, and at worst engaging in a baldfaced lie. Yes, the healthcare available to certain people in the United States, and to certain well-heeled foreign nationals who fly here for treatment, is among the world's best. Yes, our nation is at the forefront of medical research. But our healthcare system - the overall structure whereby healthcare is delivered to the citizenry at large - is costly, inefficient and just plain broken for huge numbers of sick people. Worst of all, the sicker you get, the more you pay.

(That, by the way, is one thing the author of the Business Week article cited above admires about the French system. In France, the sicker you get, the less you pay.)

I don't seriously think this move to repeal last fall's landmark healthcare bill will succeed. There are still enough votes in the Senate to protect it. Contrary to the anti-healthcare talking-points, a huge majority of the American people still favor it. This is mere political posturing, just as reading the Constitution aloud on the floor of the House is political posturing.

Yet, those of us who are concerned for the health of all Americans - not just the holders of Cadillac medical-insurance policies like members of Congress - ought not to be complacent. This move is a major threat to the health, happiness and survival of millions of hardworking people. It seeks to perpetuate a corrupt system whereby big-business interests siphon off billions of dollars in profits, while poor and middle-income people die unnecessary deaths.

Remember, this is the man who once handed out checks from tobacco lobbyists on the House floor. That shows whose side he's really on.

January 3, 2011 - Just the Facts

Today, I run across an updated fact sheet on Relapsed/ Refractory Follicular Lymphoma from the Lymphoma Research Foundation.

Although my initial staging was "B-cell, diffuse mixed large and small cell," the assumption Dr. Lerner and I have been making is that the relapsed cancer we've been monitoring for the past four and a half years is follicular lymphoma (a small-cell variety). It seems to be behaving in the indolent fashion typical of follicular lymphoma, anyway. After making its first appearance 8 months after my final round of R-CHOP chemotherapy, it's been snoozing.

We've still not been able to get an excisional biopsy of the relapsed cancer. The affected lymph nodes that keep showing up on my scans are not in an easy place to access surgically. There was one attempt to do so, with a swollen lymph node at the base of my neck. That brought me all the way to the operating table, but was called off at the last minute when the surgeon could no longer feel the affected lymph node.

Based on what I've learned about the disease, I'd say the fact sheet is a good one. It reflects some of the latest developments in research. It doesn't mention idiopathic vaccine treatments, though, that are still being researched.

The fact sheet communicates some wonderful news: that, thanks to the energetic researchers working in this field, there is now a range of possible treatments to choose from.

Here's another write-up, from the National Cancer Institute website. One line from that summary of recent research that catches my eye is this one: "For patients randomly assigned to watchful waiting, the median time to require therapy was 2 to 3 years and one-third of patients never required treatment with watchful waiting (half died of other causes and half remained progression-free after 10 years)."

I'm already past the 2 or 3 year median, and have a pretty good chance of landing in the one-third of patients that never require further treatment.

At such time as further treatment may be called for, I think I'd lean in the direction of radioimmu- notherapy (a single dose of Bexxar or Zevalin). Either of those medications seems to me to strike a good balance between effectiveness and quality-of-life issues. I'd rely heavily on Dr. Lerner's recommendation, of course, and would also go for a second opinion with Dr. Portlock, as I did before.

Stem-cell transplant is potentially the most effective treatment of all - but that's riskier, involves multiple side-effects and presupposes that a compatible donor could be found (we've already discovered that neither of my two brothers are a good match, so I'd have to depend on the national donor registry).

So, those are the facts (at this point in time).