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.

Two doctor reports this week; both of them good.

Oncologist – Dr. Dax gave me the results of my recent PET scan; the first since my bone marrow transplant in June. There are no signs of cancerous activity in my lymph nodes! The x-rays done at the time of my accident showed some lesions in my right lung, but these have shrunk since then so they’re probably related to the accident or an infection and not cancer.

Orthopedist – Dr. Do took another set of x-rays and says my back is healing fine. I can shed my body brace, which is a great relief. I can also resume driving—but not running. It’s been more than six weeks since I’ve been behind the wheel and I’m looking forward to being more mobile.

Osteopenia – X-rays and a bone density scan show I have osteopenia, the precursor to osteoporosis, which my mom had, which is probably where I got it, which also gets worse with age, which just means my bones fracture more easily.

Okay – on with life!

Writing is a lonely profession, especially when you don’t have any projects to work on. Having a home office can be lonely as well. And then there’s injury and illness, which can lead to bouts of isolation.

Isolation isn’t good for the soul. We are born with the innate need to connect to others.

“Connectedness for the average, healthy (sigh) person is a part of who we are and how we function. It is wired into our brains when we are still in our mother’s womb. This connectedness is passed on by our genes and is necessary for us to survive and thrive as healthy, capable persons.” Hooked

I can hardly wait to start driving again. I miss going to Sophia’s in the morning to write. I miss meeting friends and potential clients for coffee or Happy Hour. I miss being in a rock band.

(Okay, the last/only band I was in was 40 years ago during high school. I played bass for The British Walkers. The closest any of us had been to England was the globe in the school library, but still, it was a cool name.)

I hope to be given the thumbs up to drive when I see the orthopod on Thursday. Today I see the oncologist to get the results of my PET scan. I hope he has good news.

Thinking about human suffering is like trying to ride a bull. Most efforts are short-lived and you can wind up getting the faith kicked out of you.

I’ve wrestled with the anomaly of a good God and a bad world for most of my adult life. I’ve had insights that have caused me to reject certain explanations but I still come far short of understanding why things have to be the way they are. Ah, the limitations of a finite mind.

Years ago I put one view of the dilemma into my book, Jewel Heist (book four in the Matterhorn series). It’s a dream sequence in which Jewel, whose mother is dying of cancer, argues with the Maker about why he allows evil.

Here’s how the chapter begins.

Sea of Life

The old lookout tower had been built in the 1930s and abandoned a half-century later. The fourteen-foot-square room perched five stories off the ground and commanded a 360-degree view of the forest. Jewel’s father had piggybacked her to the top when she was only six years old. The panorama took her breath away; she swirled herself dizzy trying to take it all in. She was a Princess, her father told her solemnly, and from this tower she could survey her entire kingdom. The animals would be her royal court; the stately pines her loyal guard.

Ever since that first visit, the tower had been her special place, her safe haven. She came here to think or pray or just get away from people. Birds kept her company, perching on the half-walls and gossiping about the happenings below. Squirrels brought her the choicest nuts and berries in exchange for peanut M&Ms. Deer gathered at the bottom of the rickety ladder to be scratched behind the ears and fawned over.

Jewel sat on the floor in a rectangle of morning light near the antique wood stove. Etham, Alex, and Gerlac were distant memories. Part of her wanted to race home and check on her mom. The rest of her wanted to stay put and not know if this was the broken world she remembered or the “fixed” one Etham had promised.

Wrapped in her own thoughts, she only gradually became aware of someone else in the tower. Not a person with shape and size but a presence that filled the space without crowding her.

“You are troubled, Princess?”

“I’m confused,” she replied, not surprised by the presence or the question. “Etham says you have let things get out of hand. That’s why there is so much evil on Earth.”

“I am responsible for the possibility of evil by allowing freedom.”

“We haven’t handled freedom very well,” Jewel said. “Maybe the nobles should be allowed to change things for the better.” After a pause she asked, “What’s wrong with letting them correct our mistakes?”

“You mean my mistakes?”

“Well, you could have kept tighter control.”

“The ability to choose is what gives you dignity. Character and creativity only blossom as the fruit of free will. If you want to see what tighter control looks like, glance below.”

(Read the rest of the chapter in the page Sea of Life.)

I got my latest PET scan today. It should have been done a month ago but my auto accident postponed everything. It’s the first scan I’ve had since my bone marrow transplant in June and will show what’s happening on the cancer front.

Nothing I hope.

PET stands for “Positron Emission Tomography.” Here’s how it works. The scan-ee has to fast for 12 hours, then is injected with a tracer isotope, usually fluorodeoxyglucose (FDG), just prior to the scan. The FDG collects in high glucose-using cells such as the brain, the liver, and rapidly growing tumors, a.k.a. cancers.

After about an hour the patient is put on a flat table and drawn into the imaging scanner that records the energy given off by the FDG. This energy is converted into hi def, 3-D pictures that can be manipulated and studied from any angle.

A PET scan differs from a CT scan or MRI in that it reveals changes on the cellular level whereas a CT or MRI detects changes in the structure of organs or tissues. PET scans are especially useful for diagnosing, staging and monitoring treatment of cancers, particularly lymphomas.

That’s why I’ve had several.

Good thing they’re painless.

Flash Forward is a new TV series revolving around the question of whether the future already exists. And if it does, can our choices and actions change it in any way?

The question of free will has been around a lot longer than TV.

The ranks of those who believe the future exists and can’t be changed include many Christians (especially Calvinists), Muslims and Jews. This view isn’t restricted to the religious. Secular determinists and many physicists (including Einstein) believe the future is as set and unchangeable as the past.

The inevitability of an immutable future is deduced from the character of God in the case of the former and the laws of classical physics in the case of the latter. Open theology and quantum physics posit a less certain future; one that is actually influenced by the present, but this is the minority view and considered heresy.

However, while millions believe in a fixed future, no one behaves as if it’s the way things are. We all live as though we have real choices and that those choices really matter.

Do you pray? If the future is set, whether you pray or not can’t change it . . . unless of course you were predestined to pray . . . in which case you had no free will in choosing to do so.

Do you work out, watch your diet, wear your seatbelt? Why bother if the dates that will appear on your tombstone are already chiseled in?

We bother to pray and to take care of ourselves because we instinctively believe choices have consequences.

We think what we do today affects tomorrow, not the other way around.

Imagine that!