Exposing Myself

I write for a living. It’s not a lucrative vocation. The percentage of writers who are financially successful is as miniscule as the number of amateur athletes who make it to the pros or the number of aspiring actors who become famous enough to attract the paparazzi. But people still play sports sans spectators or sport about in plays that are so far off-Broadway it would take the Hubble Telescope to watch them. Sure, these folks would love to be discovered and celebrated but they’d settle for being respected by their peers and solvent.

 

Writing is either in your genes or it isn’t. I started a personal journal in 1969 and became a professional journalist in 1990. I’ve made a stop-start living as a wordsmith ever since. If I’m typical of the breed, I can tell you that writers are motivated by love, joy and faith.

 

Writers write because we love words and their mesmerizing effect on others. A well-turned phrase is a source of mutual pleasure. As Proverbs 25:11 says, “A word aptly spoken (or written) is like apples of gold in settings of silver.” A powerful story is like a poignant song; a memorable book like a masterful symphony. They bring author and audience together in an intimate embrace of mind and emotion.

 

Writers write for the masochistic joy of it. We have a compulsion to expose ourselves on screen and paper in hopes others will be interested in what we have to say. Most of what we put out is ignored or rejected. But when we get a favorable response, it’s like praise to an insecure child. We long to repeat and intensify the experience.

 

Writers write by faith. We tenuously believe that someday, somewhere, someone will read our words and complete the circle of communication. I’m working on a children’s book now that may not be read by anyone for years, if ever. It’s the third volume in a series every publisher I’ve approached has rejected. I’m also hatching ideas for a follow-up series to my Matterhorn the Brave books, even though the publisher it took me ten years to find recently dropped the series.

 

When I got cancer, I started this blog to share my experience with family, friends and strangers. It takes valuable time and produces zero income. So why do it?

 

It’s an expression of love, joy and faith.

 

(If you want an entire book on the subject, one of the best is Stephen King’s On Writing: A Memoir of the Craft. Not being a horror fan, I haven’t read any of King’s novels—of which he’s sold over a quarter billion—but I resonate with his wisdom and wit.)

 

Twilight Zone

At 18 I saw the light (as told in the page Growing Up Catholic). In my middle years I did my best to serve the light (see Protestant Reformation). So how did I wind up at age 57 in the Twilight Zone?

 

To borrow a phrase from Kinky Friedman, I feel like a “Jehovah’s Bystander,” someone who believes in God but isn’t personally involved. Winston Churchill expressed the same sentiment when he said that he related to the church rather like a flying buttress: he supported it from the outside.

 

This is a seismic shift for someone who spent his adult life on the inside. . . (Read the details in Jehovah’s Bystander.)

 

The Other Side of the Needle

I was in the oncology clinic last Tuesday for my fifth of six rounds of chemo. Our word “oncology” comes from the Greek onkos, meaning bulk, mass, or tumor and the suffix logy, meaning “potentially nauseating.”

 

The study of tumors includes diagnosis, therapy, follow-up and palliative care of people with cancer. Nurses don’t wear hats anymore, but if they did, oncology nurses would be in green berets. They are on the front lines in the war on cancer. What makes them want to work daily with sick and dying people? I asked two of the ones I’ve gotten to know over the past few months.

 

Anne has been an oncology nurse for almost seven years. She got interested in this branch of nursing after helping care for her mother-in-law who died of lung cancer. (Her father also died of cancer.) “The patients are so awesome,” Anne says. “I try to be friendly with them but not to become friends because it’s hard to lose one. You can’t do your job if you’re grieving all the time.”

 

 

 

Michelle took 18 years off from nursing to raise and home school five children. Now she works in the oncology clinic at Memorial Hospital. “The hard part is dealing with what you can’t control,” Michelle says. “But the patients are great because they are much more engaged in their condition and eager to cooperate. They’re my heroes.”

 

 

I think the heroes are on the other side of the needle. “Blessed” isn’t a word usually associated with chemo but I feel blessed to have the medical care I do. I’m blessed by the technology and those who lovingly administer it, of whom Anne and Michelle are just two examples.

 

Survivor: Chemo

How about a new version of Survivor called Chemo Clinic? To qualify, contestants must have a white blood count between 3.5 and 10.6 KmcL and not be afraid of needles. They would have a series of toxic drugs injected into their arteries, after which they would compete at various tasks like:

 

• Correctly pronouncing the concoctions they’ve on (e.g. cyclophosphamide or doxorubicin)
• Pole racing to the bathroom
• Peeing orange (darkest color wins)
• Eating hospital food
• Sleeping through the night at any time during the next week

 

Contestants could be voted out of the clinic for:

 

• Allergic reactions (this gets you carted off to the emergency room)
• Bad-mouthing the pharmacist
• Excessive shedding
• Complaining about the magazine selection
• Watching Fox News on the TVs above their recliners
• Screaming during the removal of chest hair via postcard-sized bandages (for those who have chest hair)

 

There is no immunity in Chemo Clinic as the drugs wipe this out.

 

A contestant who makes it through six or more rounds of Chemo earns the right to be called a Survivor.

 

Clean PET

The results of my recent PET scan came back on Friday and Dr. Dax pronounced me in “unofficial remission!” “Remission” means there’s no sign of cancer in my body; “unofficial” is because this has to be confirmed by a follow up PET in three months. I have some slightly enlarged lymph nodes where the tumors used to be but this could be from scar tissue.

 

I still have two rounds of chemo to go, plus follow up visits to the clinic for the next two years, but this diagnosis is as good as it can get at this stage. I feel like I’m in a beautiful clearing, yet still have a long way to go until I’m out of the woods. Cancer can return, especially in the first two years after treatment. I’ll continue with my dietary and other changes to improve my odds of turning remission into a cure, which is a five-year process.

 

According to The Leukemia & Lymphoma Society, the five-year relative survival rate for NHL has risen from 31% among Caucasians in the 1960s to 65% for all races by 2004. It looks like I‘ve been effectively drugged into the fortunate two-thirds of the equation.

 

Thanks to all of you who have prayed and written. It has meant so much to me physically and spiritually. Keep it up!

 

Oncologists don’t see as much success as other physicians. I told Dr. Dax to give himself a “W” for me. Let’s pray I stay in the win column.

 

Anticancer Quotes

As mentioned in a previous post, I recommend the book Anticancer: A New Way of Life by David Servan-Schreiber to everyone—with or without cancer.

 

Here are some quotes to pique your curiosity:

 

“Cancer lies dormant in all of us. Like all living organism, our bodies are making defective cells all the time. That’s how tumors are born. But our bodies are also equipped with a number of mechanisms that detect and keep such cells in check. In the West, one person in four will die of cancer, but three of four will not. Their defense mechanism will hold out, and they will die of other causes.” (The book goes on to explain these mechanisms and how to strengthen them.)

 

“Cancer is more widespread today in the West and has been increasing since 1940. Hence, we must examine what has changed in our countries since World War II. Three major factors have drastically disrupted our environment over the last fifty years:

1. The addition of large quantities of highly refined sugar to our diet.
2. Changes in methods of farming and raising animals and, as a result, in our food.
3. Exposure to a large number of chemical products that didn’t exist before 1904.”

“. . . studies on the activity of immune cells … show that they are at their best when our diets are healthy, our environment is “clean,” and our physical activity involves the entire body (not just our brains and our hands). Immune cells are also sensitive to our emotions.”

 

Servan-Schreiber offers some interesting dietary advice:

 

Green tea (reduces) the growth of the new vessels needed for tumor growth and metastases. Drink two or three cups a day. Let steep for 5-8 minutes.

 

Turmeric (yellow powder used in curry) is the most powerful natural anti-inflammatory identified today. To be assimilated by the body, turmeric must be mixed with black pepper.

 

Tomato sauce – It has been proven that lycopene in tomatoes leads to longer survival rates from prostate cancer in men who consume tomato sauce in at least two meals a week. Tomatoes must be cooked in order to release their lycopene.

 

Red wine – (contains resveratrol, which) acts on genes that are known to protect healthy cells against aging. It can also slow the three stages of cancer development. One glass a day with a meal.

 

Dark chocolate (more than 70% cocoa) contains a number of antioxidants (whose) molecules slow the growth of cancer cells. Mixing dairy products with chocolate cancels the beneficial effects of the molecules of cocoa. Avoid milk chocolate.

 

A Real Pain in the Ass

A friend of mine was recently diagnosed with prostate cancer and has his first treatment tomorrow. I wish A. R. the best as he gets radiated.

 

In the spirit of poking (sic) fun of cancers I don’t have, I offer this educational video.

 

Cancer Buy the Book

One in four people in the Westerner world will die of cancer, which makes it a popular subject these days. On Lulu.com you can buy over 700 books on cancer. A search on Amazon brings up almost 250,000 results (some, no doubt, having to do with horoscopes). Still, there are a few titles that don’t exist, but should:

 

Chemosabe: Famous People Who Beat Cancer - Jay Silverheels (aka Tonto)

What’s In It For Me? Using Cancer To Get Your Way - Dennis Leary

Born Under the Wrong Sign: Avoid Cancer By Changing Your Birthday - Jeanne Dixon

Procrastinator’s Guide To Cancer - Tom DeLay

Cancer: Miracle Cure For Old Age - Dr. Al Zheimer

The Secret Life Of Angiogenesis Inhibitors - Sue Monk Kid

Outwitting Your Oncologist - Scott (Deadbeat) Monteith (Based on the true story of a patient whose oncologist gave him six months to live. When Scott couldn’t pay his bill, the doctor gave him another six months.)

 

Then there are the books on specific cancers:

 

Lymphoma: The Weight-Loss Cure “They” Don’t Want You To Know About - Kevin Trudeau

Tapeworms and Colon Cancer - J. Wentworth Wigglebottom

Simply Bursting: Relief From Bladder Cancer - April Showers

Licking Tongue Cancer - Professor Grievous Maw

The Pocket Guide To Testicular Cancer - Lance Armstrong

Coming To Grips With Breast Cancer: A Hands-On Approach - Dr. Joy Mounds

 

The best book I’ve read on the subject to date is Anticancer: A New Way of Life by David Servan-Schreiber.

 

After undergoing chemotherapy and surgery for brain cancer, Servan-Schreiber, a clinical professor of psychiatry at the University of Pittsburgh School of Medicine, asked his oncologist if any lifestyle changes would prevent a relapse; the answer was no. Certain this was wrong, Servan-Schreiber spent months researching a mass of scientific data on natural defenses against cancer. After a lucid introduction to cancer and its causes, he points out studies indicating that a poor diet, unhealthy habits (like smoking), some hormones, and environmental toxins increase risk. - Publishers Weekly

 

The recent review in the New York Times by Abigail Zuger, MD misses the mark:

 

It is worthy of the finest in nighttime television infomercials, where among all the financial advisers, kitchen gadget guys and acne specialists is one with a story so personal, heartfelt and sensible that you suddenly need exactly what he has to sell. Not that Dr. Servan-Schreiber is peddling a product (other than his book). Rather, it is a way of life he wants you to buy into, a guide to staying cancer-free (or, if he has reached you too late, fighting off your cancer) by paying careful attention to what you eat and how you behave.

 

The Anticancer approach isn’t new, but with his medical training and personal experience, Servan-Schreiber is in a unique position to teach from the head and the heart. He doesn’t disparage conventional medicine, as many alternative advocates do, nor does he dismiss the vast amount of data on the benefits of nutritional and lifestyle changes.

 

I’ll include some of my favorite passages in a future post.

Slow Death

My appointment at Memorial Cancer Clinic went well. Dax, John, Sharon and the others were their usual friendly and caring selves. No white coats or excessive formality, which makes it easier to relax.

 

It looks like I’m responding well to the drug regime. I’ll be getting a PET scan in a few weeks to check progress. No CRP test is necessary because my other cancer markers are looking good since I started chemo (e.g. my LDH is back to normal). Round four is tomorrow.

 

My goal in all this ill treatment is good health, which as Kinky Friedman points out, “is merely the slowest possible rate at which to die.”

 

Mid-Term Exam

Next Monday I have my mid-term appointment with Dr. Dax Kurbegov. On Tuesday I get my fourth of six R-CHOP chemo treatments and I’m interested to see how my cancer is responding to the toxic treatment.

 

Based on my research I have two diagnostic questions to ask the good doctor:

 

1. What about getting an 18FDG PET scan?

 

This type of scan has “greater prognostic values than CT after the third and the last cycle of chemotherapy. PET after three cycles of chemotherapy is predictive of 18-month outcome in patients with intermediate and aggressive NHL (Non Hodgkin’s Lymphoma) and HL (Hodgkin’s Lymphoma) and may help in the identification of patients who would benefit from more intensive treatment or from a change in chemotherapy.”

 

Also, an interim positive PET scan is a statistically significant adverse prognostic factor for treatment failure.

 

2. What about checking my CRP level?

 

CRP stands for C-Reactive Protein. “The early-mid treatment serum CRP level is a prognostic factor in aggressive NHL. Patients who do not achieve an early-mid treatment level of <5 mg/L have quicker disease progression or earlier relapse and also appear to have an inferior overall survival.” http://www3.interscience.wiley.com/journal/117978510/abstract

 

I’ll post the answers to these questions when I get them.

 

God in The Shack

My daughter just finished the bestselling book The Shack and asked me what I thought of it. I read it a few months back and came away less impressed than most readers. It has obviously touched people on an emotional level and has been an encouragement to many; who am I to criticize?

 

But I will offer a few observations.

 

The book’s popularity says a lot about our current view of God. The Graybeard from the Sistine Chapel has been replaced by the Oracle from the Matrix movies. The latter is more approachable and down to earth. She laughs, she cooks and she explains theodicies around the dinner table. We long for God to be this available and intimate.

 

Some metaphors are better than others. All metaphors and anthropomorphisms—even those in Scripture—are inadequate, but they’re all we have. Still, we need to be reminded these are only figures of speech. “Father” is a concept borrowed from time; not eternity. “Trinity” is our attempt to reconcile the logically inconsistent. God has no gender, even though we mostly refer to “him” with male pronouns. Other than the incarnation, he has no physical being—no skin, arms, eyes, ears or brain for that matter.

 

The image of God we carry around on our mental hard drives is comprised of bits from our family upbringing, our cultural biases and our church’s teachings. Those of us with a biblical pedigree snap verses together like multicolored Legos to construct our version of the Father, Son and Holy Spirit. How else to explain over 38,000 different “Christian” denominations, all rising from the same book?

 

God is “wholly other,” as theologians like to say, and far beyond our feeble thoughts. He can comfort us but he doesn’t invite many over for the weekend to explain life’s injustices. Most of his personal appearances in the Bible have a far more ominous cast than portrayed in The Shack (e.g. Exodus 19, 1 Kings 8, Isaiah 6), including the post resurrection appearances of Jesus (Acts 9, Revelation 1).

 

The Shack is a work of fiction, not theology. It has resonated with millions because it’s how we’d like God to be.

 

Truth is, it ain’t necessarily so.

 

The Looting of America

Looting is a crime everywhere in this country except in Congress. The Senate added over 300 pages and more than $100,000,000,000 in bald-faced bribes to the Economic Bail Out Package so the House would pass it. This bloated bill has so much pork it deserve to get Swine Flu and die.

 

Talk about robbing Peter’s grandkids to pay Paul!

Talk about naked profiteering from a national disaster!

Talk about piling on!

 

I understand earmarking and pork-barreling are nothing new for Congress, but the scope and timing of this episode are shameful. They are using the financial crisis to enrich their constituents and special interest supporters.

 

The word extortion comes to mind. Look it up.

 

My Heroes

Now that I’m shopping for a new publisher for my Matterhorn books, I picked up The Sword and the Flute and read the first chapter, asking myself if it was strong enough to pull a busy editor into the story. I got drawn in and read the whole thing. (Turns out I had several hours of unexpected free time last Friday while in the emergency room waiting for some blood test results. Everything came out fine.)

 

Being an inveterate editor, I found phrases that could be tightened and nuances that could be added, but then as every experienced writer knows; a book is never finished, only abandoned.

 

For someone who made up over 300,000 words as I went, the saga turns out surprisingly coherent. Almost like I had a plan, which I didn’t. I had no idea how the tale would end until I wrote the last chapter and epilogue.

 

I genuinely love the Matterhorn characters and the people who inspired them, my wife, children and their spouses. They are my heroes, from Queen Bea to Nifer the Fairy. They are people of integrity, ingenuity and imagination. Each is fearfully and wonderfully made; uniquely gifted and delightfully vibrant.

 

Plus, they have heeded the advice of Phoenix of Hungary, as quoted in A Pocket Mirror for Heroes. “The grandeur of a hero depends on two things: doing good deeds and being generous to writers, for eternity is captured in characters of gold.”

 

My family qualifies on both counts. As for eternity, that’s too lofty a goal. I’ll settle for just getting all eight books in print.

 

Why Me?

While I have asked this question about other things in life, I have not asked it with regard to getting cancer. It will happen to over two million Americans in 2008; why should I expect immunity from this lethal lottery? Here are the estimates according to the American Cancer Society: Cancer Facts and Figures 2008.

 

Cancer Type	Estimated New Cases	Estimated Deaths
Bladder	68,810	14,100
Breast (Female - Male)	182,460 - 1,990	40,480 - 450
Colon and Rectal	148,810	49,960
Endometrial	40,100	7,470
Kidney (Renal Cell)	46,232	11,059
Leukemia (All)	44,270	21,710
Lung	215,020	161,840
Melanoma	62,480	8,420
Non-Hodgkin Lymphoma	66,120	19,160
Pancreatic	37,680	34,290
Prostate	186,320	28,660
Skin (Nonmelanoma)	>1,000,000	<1,000
Thyroid	37,340	1,590
Total	2,137,632	398,739

 

“Why” questions can be exercises in futility. While some things are more statistically probable—smokers getting lung cancer, drunk drivers having accidents—others are complete mysteries. Tour de France winners get cancer, too, and non-drinkers get killed by drunk drivers. Bad things happen to good people. Christian and non-Christian alike.

 

When it comes to individual events, life can be more akin to quantum mechanics than classical physics. Uncertainty sometimes trumps cause-and-effect. “The race is not to the swift or the battle to the strong, nor does food come to the wise or wealth to the brilliant or favor to the learned; but time and chance happen to them all” (Eccl 9:11).

 

The more important question is, “How am I going to play the hand I’ve been dealt?”

 

“Because in life, there comes a time,

When one must fight, and one must climb,

When one must rise and take a stand,

Or leave their butt prints in the sand.” - Anon

 

  

 

Stunt Double

Those who know me were not fooled by the photos accompanying my last post so I’ll admit that I used a stunt double (my son-in-law) for the climbing shots. Being a professional writer, I couldn’t risk injuring my fingers on a vertical rock wall. Plus, I’m afraid of height.

 

There are things in life for which a stunt double would be absolutely great:

• giving birth
• IRS audits
• root canals
• prostate exams
• chemo

Speaking of which, I had my pre-chemo blood workup today and am cleared for round three tomorrow. On Wednesday I go back for my Neulasta shot. A strong chemo regime results in a low white blood count—known as neutropenia—that increases the risk of infections. Neulasta is a white cell booster that, along with the Rituximab given at the start of chemo, has dramatically improved survivability. Especially for Non Hodgkin’s Lymphoma.

 

Better living through drugs!

 

According to the Mayo Clinic, the five-year survival rate for NHL has risen to 63%. It’s even higher when it’s caught in the early stages, when the person is under 60, and when there are no other complications. All true in my case.

 

Next Monday I have to see a cardiologist because my heart has decided to skip a beat now and then. Not enough to cause problems, and I’m not even sure the doctor will find it, but it has to be checked out.

 

I’m told I look much younger without the gray hair, so I may keep my chrome dome after all this is over. Then there’s the money I’ll save on haircuts and shampoo.