The Wellness Warrior Chooses the Wrong Weapon

Having lived through seven lung cancer recurrences and survived for twelve years with Stage III and IV cancer, Jim is unquestionably an outlier (a person or thing differing from all other members of a particular group or set). Because of this distinction, people frequently ask our advice about which cancer treatment to pursue. I wouldn’t presume to tell anyone what path to follow, but I am willing, even obligated, to tell anyone what we did and why. 

In the beginning, we researched a multitude of alternative and complementary treatments, but never seriously considered foregoing traditional cancer treatment. Still, I understand why some choose this route. “Slash, burn, and poison,” the derisive terms used by some traditional medicine opponents  isn’t nearly as appealing as the “detoxify, nourish, and supplement”  alternative plan. Lacking trust in physicians and big pharma, many cancer patients choose an alternative that promises healing without pain. Change your diet, bolster your immune system with supplements, cleanse the body of all the nasty toxins, and cancer will go running.

I have personally known two people who chose the alternative route with success. One of them, Gayle Miller, who when traditional treatments for lymphoma failed, adopted a macrobiotic diet and took the supplement Ambertrose, is still alive. The other Jess Ainscough, a vocal adherent of The Gerson Method is no longer with us. 

While I have read of many successes with The Gerson Method, Jess was the only person I knew personally who followed the directives faithfully and claimed to be cured from a nasty cancer—epithelioid sarcoma. In 2008, the doctors told Jess (after a failed course of chemo) that her only hope of a cure required the amputation her left arm—not an attractive option to a twenty-two-year-old woman. 

Jess opted instead for a more natural treatment and traveled from Australia to a clinic in Mexico where she got a jump start on the detoxification and rebuilding process that includes coffee enemas every few hours, juicing pounds of organic vegetables three times a day, and the same limited diet day in and day out for two years. Jess did all of this believing that she was healing. When new tumors appeared on her arm, she was convinced they resulted from the positive changes occurring in her body. She started a blog, The Wellness Warrior, chronicling her journey and giving tips to others who might want to forego standard cancer treatment in favor of a more natural approach. 

In 2011, when Jess’s mother, Sharon, got breast cancer, the family decided that she, too, would follow the path set out by her daughter. Unlike Jess’s cancer which was a slow-growing but pernicious type, Sharon’s was aggressive and fast-moving. She was dead within a year.

Granted, chemotherapy is no walk in the park, but I assure you, neither is the Gerson Method. Why would someone pay thousands of dollars for a cancer treatment involving a diet of thirteen fresh organic vegetable juices and five coffee enemas per day, and a basic organic whole food plant-based diet supplemented by raw liver injections, mineral supplements, pancreatic enzymes , and Lugol’s solution (an inorganic solution of iodine plus potassium iodide)— a regimen that keeps the patient essentially housebound for two years and has not been proven effective? 

People stricken with a catastrophic disease are easy marks for charlatans and crooks.They are looking for hope, grasping at straws rather than looking for life buoys. “In her promotion of Gerson quackery, Ainscough, with the noblest of motivations in the beginning, did harm and likely led some cancer patients down the path of quackery and preventable death.” (Terry Firma) Sadly Jess Ainscough died this year but only after influencing countless others to employ an alternative cancer treatment that ultimately failed her.

Are Diagnostic Scans Killing You?

We came to Houston Sunday for Jim’s scans—the first since November when he was declared to be in full remission from stage IV lung cancer. The scan was to be a combined CT/PET. At least that is what we expected. But when Jim reported for the scan early Monday morning, the radiologist informed him that they would only be doing a PET—to be followed by a CT scan if anything lights up on the PET.

Obviously, the doctors are concerned about the excessive amount of cumulative radiation exposure Jim has incurred over the past nine years. I don’t have a precise number but I would be safe to say he has had 30 PET scans, 30 CT scans, 10 chest X-rays, 8 bone scans plus CT guided surgeries, and therapeutic high dose radiotherapy. It’s a wonder he is allowed to pass through airports! Initially no one thought he would live long enough to experience problems from the multitude of diagnostic tests and therapeutic procedures he has endured. But, he surprised them.

All of this got me thinking—and subsequently researching. How many scans are too many? What risks are involved? Do the benefits outweigh the risks?

Most diagnostic tests use a form of radiant energy. X-rays have been around since 1895 when Wilhelm Conrad Röntgen accidentally discovered that cathode rays penetrated many kinds of matter. He took a picture of his wife’s hand and was amazed to see the clear image of her bones. His study led to the discovery of a new kind of electromagnetic wave which he called the “X-ray.”

At about the same time, scientists in other parts of Europe were working with other forms of penetrating radiation. The implications of these discoveries for the medical field were immediately apparent. What was not immediately apparent was the risk involved with prolonged exposure. Marie Curie whose work with uranium led to the discovery of radium and polonium died of pernicious anemia—more than likely a result of repeated exposure to the radioactive materials.

The risks inherent in the chemical structure of these elements present the same problems for us in the twenty first century.

We are exposed to radiation in every day living. In fact, you might say we are showered with it. The amount depends in part on where one lives and how much sun exposure one receives. The average exposure from natural sources is thought to be between 2 and 3 mSv per year. (An mSv is a measure of radiation--the effective dose or risk averaged over the entire body.) This is an oversimplification but gives us a comparison point for the ensuing discussion of exposure from tests and procedures.

One chest X-ray is equivalent to the amount of naturally occurring radiation one would absorb over a ten 10 day period. In other words, it is negligible.

But what about a CAT scan? I was surprised to learn that the radiation from a CAT scan of the abdomen and pelvis is equivalent to five years of naturally occurring radiation. If done with contrast—ten years!

Tomorrow I will discuss the risks verses benefits of routine testing.

Got Guilt?

Cancer patients and their caregivers experience a multitude of emotions, the least of which is not guilt.

As a caregiver, I feel guilty when I complain, when I am unhappy, when I don’t fix healthy meals, when I spend time on myself, when I am tired, if I don’t accompany Jim to every appointment, and most of all when my faith flags. And my latest heaping coal: I am compelled to plan and execute frequent family gatherings or spend every waking moment with my husband—because I don’t want to have any regrets in the future.

I can find plenty of reasons to feel guilty; I don’t need any help from outside sources.

The media, celebrity spokespersons, well-meaning friends, and even clergymen lay guilt on the already overloaded caregiver. In a recent interview on CNN, Ryan O’Neal blamed his children for Farah Fawcett’s death from cancer. He maintains that because Ms. Fawcett lived a healthy life style and never smoked or drank, her cancer must have been caused by the stress of dealing with his “wild and inconsiderate” children. Who knew? Maybe I could transfer the blame to my children.

Then we have Suzanne Somers, self-anointed health and cancer expert, chastising anyone who chooses traditional treatment. This kind of irresponsible dissemination of information by celebrities lays guilt and blame on those who have enough on their plates. As Alexander Pope said “A little knowledge is a dangerous thing.”

A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.

Celebrities aren’t the only culprits. We also are bombarded by others in positions of influence. I cringe when I hear ministers preach the “name it; claim it” message or when a friend says, “You just have to have faith.” Sifted through my admittedly muddied filter, I hear, “If your husband is not healed from cancer, it is because you didn’t have enough faith.”

The blame game doesn’t only affect caregivers. Lung cancer patients have continually been short-changed in funding because of the stigma associated with the disease. Blaming survivors for their cancer is callous. Cancer patients need all of their resources to fight the disease. They can’t waste time and energy in self-recrimination.

When Jessica Simpson, a spokesperson for “Circle of Friends” said on national TV, “Lung cancer is a selfish disease,” I nearly jumped through the screen. In her attempt to warn young women about the dangers of smoking (a laudable endeavor), she went too far in her incrimination of lung cancer survivors.

For years, we have known the relationship between HPV and cervical cancer. Recent studies have found HPV present in some kinds of lung and head and neck cancers. These findings have generated preventive vaccines which will benefit future generations but the information is of little help to those already affected. More guilt and self recrimination.

Facts can be distorted by generalization and poor reasoning. We are victims of poor logic which works like this:

1. Smoking causes cancer; therefore, smokers deserve cancer.
2. Faith is necessary for healing; therefore, if you are not healed you lack faith.
3. HPV may cause lung cancer, head and neck cancer, and anal cancer; therefore anyone who has these diseases has been promiscuous.
4. Stress causes cancer; you caused me stress; you caused my cancer.
5. Sin blocks our communication with God; if my prayers aren’t answered the way I want, there must be sin in my life.

My message to cancer survivors and caregivers: Don’t be so hard on your selves. No one knows what causes cancer. What caused your cancer is a moot point; your objective is to get rid of it. Guilt is a detriment to that objective. Eliminate “I should haves,” “I shouldn’t haves,” “If onlys,” from your self-talk. Replace them with, “I cans,” “I wills,” and “I hopes.”

No one deserves cancer.

Sick of Side Effects

Unless you have been close to a cancer patient, you are probably not aware of how debilitating treatment can be. Often the only visible sign of cancer is baldness which is temporary and, for most men, probably the least troublesome side effect. In this way cancer is like autoimmune diseases—not obvious to observers but very real.

Most often Jim appears healthy, but appearances are deceiving. He has so many side-effects and is taking so many drugs that we are no longer sure which drugs are responsible for which side-effects. This I know: all of the pain and suffering he has endured over the past nine years is from the side effects—not the cancer. He has—like many lung cancer patients—been asymptomatic from the beginning.

After nearly a year with no chemotherapy drugs, he went into this round of treatment determined not to let it get him down. Since he would be taking the same four drugs he took in 2003 (with one addition) but taking the drugs less frequently, we hoped the treatment would be more tolerable. Wrong. Either the new drug is packing a wallop or Jim is worn down from years of toxic agents, or he is just older.

List of drugs he has taken to date:

Taxotere
Cisplatin
Gemzar
Navelbine
Neupogen
Epogen
Celebrex
Coumadin
Alimta
Avastin
Carboplatin
Zometa
Taxotere
Cisplatin
Gemzar
Navelbine
Erbitux
Rapamycin
Metformin
Neulasta
Lovenox
Decadron

The temporary side-effects of these drugs have been manageable. Nausea, joint pain, headaches, diarrhea, dry eye, mouth sores, loss of appetite, fatigue, acne like rash, hair loss, metallic taste in mouth, insomnia, blood clots—all unpleasant but tolerable. The permanent side-effects are a different story—peripheral neuropathy, weakened heart muscle, osteo-necrosis of the jaw, hearing loss, blood clots, nerve damage.
The drugs taken to wipe out the cancer have taken their toll on his overall health. He has gone from taking no medication—except for allergy meds—to requiring twenty or more pills daily. The toxicity of the chemotherapy agents has resulted in conditions requiring more medication.
Carvedilol (Beta Blocker)
Pantoprazole (acid reflux)
Lisinopril (Blood Pressure)
Vytorin (Cholesterol)
Antibiotic (chronic mouth and gum infections)
Sucralfate (ulcers of the alimentary canal)

Still we consider ourselves fortunate. As bad as treatment is, for Jim it has worked. We are grateful for dedicated researchers and physicians who continue to seek a cure for cancer.

Ten things Not to Say to a Caregiver

1. "God never gives you more than you can handle."
If you say this to a caregiver, you are implying she/he should be able to cope with whatever comes his way. God frequently gives us more than we can handle so that we learn to depend on Him.

2. "My dad (mom,friend, uncle) died from this kind of cancer."
Not what the loved one of a cancer patient wants to hear. Don't even mention death to someone in the midst of cancer battle.

3. "Did he smoke?"
Why do you need to know? Will it make you feel better if the patient got his "just desserts." No one deserves lung cancer--or any other kind. Maybe you're hoping to find a cause that exempts you from contracting the disease. Give up. No one is exempt.

4. "How long did they give him?" or "What's the prognosis?

Again, none of your business. Besides no one knows the answer.

5. "You should try alternative medicine. Chemo is a killer."
Trust me. Better minds than yours are developing treatment strategies. Pumpkin seeds might have helped your yeast infection, but cancer requires big guns.

6. "You should go to ________ for treatment."
Don't use the word "should" with a caregiver. If you have personal, positive experience with a reputable physician or treatment center you might pass on names.

7. "God will heal you--if you have enough faith."
Say nothing to add to the already heavy burden of the caregiver. This philosophy implies that the outcome of the cancer is directly proportional to the faith of the patient or his loved ones. Bull feathers!

8. "Everything will be all right."
Are you omniscient? Do you have ESP? A crystal ball? Then don't make predictions. Early in the cancer journey, the only "all right" I could have accepted was complete--and fast--healing.

9. "I know just how you feel."
I doubt it.

10."You just have to have faith."
Where might I get some?

When cancer returns

When I was finishing "Cancer Journey: A Caregiver's View from the Passenger Seat," we just found out that Jim's lung cancer had metastasized for the first time. In one of my preliminary drafts, I wrote that a recurrence is not as difficult as the initial diagnosis. Lynne Eib, one of my endorsers, suggested that I might want to qualify that statement, because many people find a recurrence or metastasis much harder to handle.

This weekend at a conference in Chicago, I was talking with a man whose prostate cancer had come back, eleven years after surgery and treatment. He was devastated. For five years he believed he was cured, only to learn the cancer had returned.

What a blow it must be to have cancer reappear--like a soap opera character who, after a thorough search, is given up for dead, eulogized, and laid to rest, only to show up years later, resurrected, causing havoc in Pine Valley.

In 2008, when Jim had his first recurrence, I had been looking over my shoulder for five years waiting for cancer to come back. Therefore, as I said in my book, the recurrence was not so shocking. Even in 2009, when the cancer metastasized to the bone, I was not caught completely off guard.

But, I must admit, if it rears its ugly head again, I will be crushed.

The solution? Do I protect myself by refusing to accept the miraculous remission that we are enjoying? Must I continue to look over my shoulder to keep from being blindsided if the cancer returns?

I would rather not. I have made a conscious decision to adopt the philosophy of the cockeyed optimist, claiming and believing that Jim has been healed--even if that means making myself more vulnerable if I'm wrong.

I'll let you know how it goes.

A Divine Appointment

We were in the shuttle on the way to our appointment with the oncologist. Because we had to wait ten minutes for the hotel shuttle to arrive we were barely going to make it on time. Another couple flagged down the car as we were about to pull away.
“Oh-oh,” I thought. “We are never going to make it.”
“Do you mind getting in the far back?” the driver asked, as Jim got out to offer the lady the middle seat. The man climbed in back with Jim. “We’re going to the pulmonary pavilion at MD Anderson,” the woman said to the driver, as she climbed in next to me.
“Are you going for treatment?” I asked after introducing myself. “This is our first time here,” she explained. “I was diagnosed with lung cancer in December.”
“My husband has lung cancer,” I told her. “We’ve been coming to Houston now for seven years. I know how scary it can be at first, but it gets better.”
She started to cry. “Six weeks before the doctors told me about the lung cancer, my husband was diagnosed with Lou Gehrig Disease. Then the lung cancer. The doctor said it is in both lungs and inoperable. That is why we came here for a second opinion.”
Talk about a double whammy. Two terminal diagnoses within two months. We told them about Jim’s grim prognosis and the miracles we had experienced. They gave us their e-mail and we added them to our f.a.i.t.H. list.
I well remember those first days when we prayed to meet someone who would lift our spirits, listen to our story, or just give us a loving pat on the shoulder. Someone who could say, “You are going to be OK. You’re not alone.”
We watched as they walked into the building, holding hands, hopeful that MD Anderson could give them at least one miracle.

A Covert Killer

November is National Lung Cancer Awareness Month and I want to take this opportunity to tell you about the disease that came into our lives like a thief in the night.

As most of you know, my husband Jim was diagnosed with lung cancer in 2002. November 15 of this year marks seven years of his survival with a catastrophic illness that doesn’t get the attention it deserves.

Jim is in a minority. He is in an elite group of those who have survived more than five years with lung cancer. Taking into account the stage and spread of his cancer, the group is even smaller. Less than 1% of patients with stage IV lung cancer live for 5 years.

In 2002, Jim was one of approximately 220,000 people diagnosed with lung cancer. 28,000 of those never smoked. Only 35,000 or 16% were diagnosed while in the early stages. Comparatively, 90% of prostate cancers are discovered in early stages; 50% of breast cancers are diagnosed in early stages.

Only 16 % of people diagnosed with lung cancer live for 5 years, as compared to 89% of breast cancer and 99% of prostate. That means that 187,000 of the 220,000 diagnosed along with Jim in 2002 are dead.

Lung cancer kills 160,000 people annually—more than breast, colon, and prostate cancers COMBINED. Yet a disproportionate amount of money is spent on research. The National Cancer Institute estimates that last year it spent $1,415 per lung cancer death, compared to $13,991 per breast cancer death, 10,945 per prostate cancer death, and 4,952 per colorectal cancer death. Yet, among all types of cancer, lung cancer remains the #1 killer—for both men and women.

Unfortunately, there is a stigma that accompanies lung cancer because many people assume it is caused from smoking and therefore self-inflicted. Jim never smoked; he was physically fit and went for regular physicals. Even if he had been a smoker, no one deserves lung cancer any more than someone deserves AIDS or Diabetes or breast cancer. But we don’t seem to judge as harshly people who fail to exercise, spend time in tanning beds, or eat a steady diet of fast food.

“There is a feeling among the general public, that lung cancer is a self-inflicted disease. Smoking is responsible for 80% to 85% of lung cancers, but let’s put this in perspective: Twice as many women die from lung cancer in the United States each year as die from breast cancer, and 20% of these women have never touched a cigarette. Even for those who smoke and develop lung cancer, why do we attach such a stigma to them? Many cancers, and other chronic diseases, are related to lifestyle choices.”
www.about.com/lungcancer “The Stigma of Lung Cancer” Lynne Eldridge MD


There are few events, rallies, or programs in November (Lung Cancer Month) compared to those in October for Breast Cancer Month—perhaps because there aren’t as many survivors to take up the banner. I guess there wouldn’t be many participants in our “Race for the Cure.” The band would have to play “When the Saints Go Marching In.”

What can you do?

Support the cause with donations.
Get an annual chest x-ray.
Stop smoking.
Maintain a healthy lifestyle.

It won’t prevent cancer but you will be better able to survive aggressive treatment.

New Hope

This is the second time in seven years we've been told that Jim is cancer free. The first time was after his surgery in 2002 when Dr. Rios told us that he was very pleased with the results of his post surgery scans which were clear of cancer. "This," he said, "is the beginning of a cure."

I didn't know enough about cancer at that time to recognize that news for the miracle it was. I didn't know how few people are able to have the surgery that puts them in that position. So many lung cancer patients are told, "It's inoperable."

I was unwilling to claim it as a miracle because I didn't want to appear naive. I had read that BAC was incurable and I believed it. I spent the next six years waiting for the other shoe to fall--and it did.

Now seven years later, we heard those magic words again. This time I am reaching out, claiming it as a miracle. Fewer than one percent of patients with stage 4 lung cancer survive for five years. Jim has had Stage 4 cancer for seven years. To be cancer free at this point means as Dr. Rios said 7 years ago: "This is the beginning of a cure." This time, I say why not? God can do anything.

"So call me a cockeyed optimist and say i'm incurably green but I'm stuck like a dope with this thing called hope and I can't get it out of my heart."

Yes, the cancer might come back, but--it might not. We have been given renewed hope and that in itself is a miracle.