Cancer and other diseases make us painfully aware of our bodies. They are indeed “fearfully and wonderfully made,” even when they malfunction. What should astound us daily is how much goes right with such complex mechanisms!

We have only to go skin deep to begin being overwhelmed. The epidermis is our largest organ, covering an average area of 25 square feet and containing 45 miles of nerves. Every square inch is nourished by 20 feet of blood vessels and populated with 32 million bacteria.

We shed and re-grow about 1.5 pounds of skin a year, which means a new set of clothes for the emperor once every 27 days and almost 1,000 new outfits in a lifetime.

The skin conceals over 200 bones—a quarter of which are in our feet—more than 600 muscles—about 40% of our weight—and 60,000 miles of blood vessels that are kept humming by a heart that beats around 2.5 billion times between cradle and grave, which, not coincidentally, is about the number of seconds we live.

Running the show is the brain, an aquatic organ comprised of 85% water, leaving about five ounces of solid tissue to do all the work. This spongy mass accounts for 2% of our weight yet consumes 20% of our intake of calories and oxygen.

But far and away the most interesting aspect of the body is that it houses the soul; the essence of who we are but whose essence we cannot locate or measure. Experiments to weigh the soul at the time of death have proven inconclusive, but even a child can tell when it has departed.

The soul (aka person, mind, self, spirit) is to physiology what the Higgs boson (aka the God Particle) is to physics. We see the effects of both everywhere but can’t isolate either one. The Higgs is presumed to give mass to matter while the soul is what gives meaning to the body. It endows this life with purpose and the next with hope.

“You don’t have a soul. You are a Soul. You have a body.”
C. S. Lewis

Waiting for the other shoe to drop – “Waiting for a related announcement or event to occur after an initial announcement or situation. When waiting for the other shoe to drop, one expects a pending situation to occur that is dependent upon an initial event.”

Living with cancer is living between shoes.

After my first chemo regimen—six rounds in four months—I had three clear scans. I got a cancer survivor certificate from my oncologist, a party from my family, and the obligatory T shirt.

But cancer is one badass disease that doesn’t like to be taunted. A few months later the lymphoma returned, which meant more serious chemo and a bone marrow transplant. Not something to put on your bucket list.

Read more . . .

Nine nouns you never want to hear in a sentence of which you are the subject: (Guess which five I’ve experienced?)

Audit
Lump
Divorce
Anal leakage
Subpoena
Root canal
Catheter
Biopsy
Cancer

According to former president Ronald Reagan, the nine most terrifying words in the English language are, “I’m from the government and I’m here to help.”

In medical terms a “chronic disease” is long-lasting or recurrent (from three months to life). A “chronic condition” is a persistent and lasting condition. I may end up with one of each. To my disease—cancer—I may be adding a condition—back pain.

It’s been almost three months since my accident and I’m still sore (lower back) and somewhat limited in mobility (upper back). I hope to improve with time and exercise but spines can be fickle things. I’m certainly thankful for the progress I have made since getting out of my shell.

“Americans spend at least $50 billion a year on low back pain,” so says the National Institute of Neurological Disorders and Stroke. “Back pain is the second most common neurological ailment in the United States — only headache is more common.”

I’m far from alone when it comes to being chronically challenged. According to the 2004 study, Chronic Care in America: A 21st Century Challenge, “Nearly one in two Americans has a chronic medical condition of one kind or another. However, most of these people are not actually disabled, as their medical conditions do not impair normal activities … The most common chronic conditions are high blood pressure, arthritis, respiratory diseases like emphysema, and high cholesterol.”

Oh-oh. Throw high cholesterol in there and I have three chronics and counting. Excuse me; I have to go lie down now.

Bone Marrow Debate Goes National

NY Times, Nov 3 – Is the Ban on Selling Bone Marrow Unconstitutional?

. . . NOTA’s criminal prohibition of donor compensation has now just been challenged in a lawsuit filed by the Institute for Justice. On October 28, a group of plaintiffs (including people with deadly blood diseases) sued Attorney General Eric Holder, claiming that the criminalization of compensation violates their equal protection rights. The suit does not challenge the general ban on organ sales but argues that the application of the ban to renewable tissue is arbitrary and irrational: More

Economist, Nov 2 – Save a life and get 5 years in prison

SOME people with blood diseases need bone-marrow transplants. It is sometimes hard to find a matching donor: 1,000 Americans die each year because they cannot find one. Yet it is illegal–and punishable by up to five years in prison–to pay donors for their trouble and discomfort. This is a foolish law. The Institute for Justice, a libertarian group, argues that it is also unconstitutional, and is trying to overturn it, arguing that the: More

US News, Oct 28 – Using Economics to Solve Bone Marrow Transplant Crisis

How does bad economics become bad law? One thing that doesn’t help is when legislators can’t be bothered to read the bills they pass … If they did, maybe we wouldn’t have the situation we do with the 1984 National Organ Transplant Act—which bans people from being paid for donating bone marrow, despite the fact that monetary compensation for blood plasma is common practice, and the bill itself even explicitly says it should not criminalize compensation for “renewable tissue” (like blood and bone marrow, as opposed to things that can’t regenerate like organs). More

I’m feeling pretty good these days but I have a 50/50 chance of needing another bone marrow transplant in the next two years.

There are around 70 diseases for which a bone marrow transplant is a viable treatment and in only a few instances—such as my lymphoma—is an autologous transplant an option. That’s where the patient’s own cells are used. This approach removes the deadly possibility of Graft-Versus-Host disease but it has a higher likelihood of the cancer returning.

If I need a transplant and can’t find a match within my family I would join the 7,500 Americans who are actively searching the national registry for a donor at any given time.

I would have about a 75% chance of finding a match since I’m Caucasian. If I were Hispanic the odds would drop to about 45%, Asian to 40%, African American to 25%. If I were of mixed race they would plummet even lower.

And if I discovered a match in the registry, there’s a 35% chance that person could not be located or would change their mind about donating; a 66% chance for African Americans.

These sobering numbers are part of the reason why about 1,000 people die every year while searching for a suitable donor.

You can im prove the odds of survival for cancer patients like me by joining the bone marrow registry. You don’t even have to leave your house to sign up. Learn more at Be The Match.

 Bone marrow donors needed to save Doreen’s daughters.

Check out the story about the bone marrow lawsuit in today’s Colorado Springs Gazette. Here’s how it begins,

For most people, it wouldn’t matter much whether you called bone marrow an organ, as it’s medically classified, or a bodily fluid, which is what it looks like.

But that distinction is at the heart of a lawsuit filed in federal court in Los Angeles this week by a group that includes a Colorado Springs cancer patient. If they win, they hope to bring more bone marrow donors to the table by being able to compensate them.

Colorado Springs freelance writer Mike Hamel, who is battling lymphoma, is among half a dozen people who want to get bone marrow removed from the 1984 National Organ Transplant Act, which makes it a felony to buy or sell organs. They contend that bone marrow, which can be replenished, belongs in the company of plasma, sperm or eggs, all of which legally can be sold, rather than kidneys, lungs and livers.

They are represented by the Washington, D.C.-based Institute for Justice, a Libertarian law firm that seeks out Constitutional issues to take on.

The suit was filed against U.S. Attorney General Eric Holder on the grounds that when it comes to bone marrow, enforcing the 25-year-old law is unconstitutional. Other plaintiffs in the suit are several parents of children in need of bone marrow transplants.

The lawsuit, though, is a means to an end, Hamel said. He and the other plaintiffs have formed a nonprofit, More Marrow Donors, to create a pilot program to make charitable contributions available to donors in hopes of encouraging people to give.

Read more . . .

When I was diagnosed with an aggressive form of cancer in 2008, filing a lawsuit that could help extend my life was the last thing on my mind.

But desperate situations don’t call for desperate actions; they call for commonsense ones. One thousand Americans die each year waiting to find a matching bone marrow donor, and thousands more suffer or die after having to gamble on a mismatched donor. A major reason for the chronic donor shortage is that we don’t do one simple thing: compensate donors.

Compensation, such as a modest scholarship or even a mortgage payment, could change the sobering reality that only two percent of the population is on the national donor registry and at least one-third of those people cannot be found when they turn up as a match for a dying patient.

Today, I join a group of patients, their families, a renowned doctor, and a California nonprofit called MoreMarrowDonors.Org in filing a constitutional challenge to a federal law that makes it a felony to offer compensation to marrow donors. We want to make it possible for MoreMarrowDonors.Org to see if strategic incentives to the most needed donors will, as we hope, save lives.

The law at issue is the National Organ Transplant Act of 1984 (NOTA). NOTA was passed to prevent people from selling organs, like kidneys, which don’t grow back. But bone marrow is a blood product. It regenerates within a matter of weeks so the donor loses nothing. And donating bone marrow is safe. It can be as simple as giving regular blood, although sometimes a painful and unpleasant procedure is needed. Incentives would probably make a real difference.

It is irrational for the government to stand in the way of adults who are making an informed decision that they—and not the government—are best able to make. It makes no sense to throw doctors, nurses, patients and donors (or the staff of MoreMarrowDonors.Org) into federal prison for up to five years just for trying a desperately needed strategy for increasing the number of donors.

What I seek to do with the suit I have filed today is to strike down the federal restrictions on offering incentives as a way to expand the pool of bone marrow donors thereby increasing the likelihood that more cancer sufferers will survive.

Off to Washington D.C. tomorrow to begin the arduous process of getting Uncle Sam to change his mind about an archaic and ill-informed law. The only means of discourse available to the average citizen is the courts, so one has to sue the Attorney General to be heard (nothing personal, Eric).

You may hear about what a group of us are up to on C-SPAN if it’s a slow news week. Otherwise, stay tuned to OPEN Mike for details.

Monday – Took a pulmonary test to see if I had any lung damage from the BEAM chemo this summer. Probably not since the results were similar to the test I had in May. (And very similar to a test I had in 1982.)

Tuesday – It’s been eight weeks since my auto accident and I’m getting a bit more mobile each day. Still not supposed to run, work out my abs or use dumbbells over five pounds.

Wednesday – I start physical therapy and I hope it will loosen the kinks and get rid of the soreness. I’d like to be able to turn my head freely in both directions—a useful skill now that I’m driving again.

Thursday – Picking up the new suit I bought for my trip to Washington D.C. next week to participate in a lawsuit against the U.S. government. Stay tuned for details.

Friday – I return to the Rocky Mountain Cancer Center for my first post-transplant check up—two months late because of my accident. I’m expecting good news since my last PET scan came back clear.

Several times in the last few months I’ve been asked by medical personnel to “choose a number from one to ten that describes my pain.” The number picked would locate me on a “pain scale” and give them an idea how much medication to administer. Higher number = stronger drugs.

There are different versions of the pain scale, the two most popular being the Visual Analog Scale (VAS) and the Face Pain Scale. All are attempts to objectify a subjective experience.

There are machines to evaluate everything from bone density (X-ray) to organ function (MRI) to cell formation (PET scan), but we have no mechanical device to measure suffering. Like beauty, it is in the eye of the individual.

Pain involves the body—including the brain—but it’s the mind that determines suffering. Some people resist pain and concede little to its onslaught. Others give way to the least discomfort and are overwhelmed. Neither approach is right or wrong; it just is.

We are hardwired for pain, with millions of specialized nerves that keep minute track of heat, cold, pressure and a myriad of other sensations. They make us instantly aware of damaging influences and motivate us toward healthy behavior, in my case like not crashing into other cars.

Conversely, there is not a single nerve in the human body designed for registering pleasure. Feelings of well-being, happiness and joy are controlled by neurotransmitters in the brain. To use a computer analogy, experiencing pain is in our hardware while enjoying pleasure is a matter of software.

Pain is a part of life and we sometimes don’t have a choice as to its timing or intensity. But in some ways we can control how much we suffer from it.