Thursday, September 13, 2012

Poor Pitiful Pearl's Post

After a three hour wait for the verdict, we learned that Jim didn’t pass the test. Another recurrence. More cancer. Additional radiation.

Pollyanna says, “At least it is treatable. We know what we are dealing with. He has always responded to treatment.”

Poor Pitiful Pearl says, “What next? When will the chemo stop working? How much more can he take? Woe is me."

In January of 2012 when Jim was told, after his third recurrence of lung cancer, that he was cancer free, I tried to believe that we were done, that the beast was conquered. Over the next eight months we basked in the glorious sunshine of remission unhampered by cancer’s dark cloud. I dared to hope that cancer was gone forever.

It was not to be. While we were enjoying the respite, the cancer cells were regrouping for another silent attack. Now I wonder if I was right when I wrote in Cancer Journey: “Once cancer is outside the organ of origin, a cure is not possible.” And if the doctors were right when they said in 2002: “This cancer is unpredictable and incurable. ”

I hesitate to express my doubts and fears because I don’t want to bring the wrath of God down upon me for failing to appreciate all He has done for us.

But here is the ugly truth: I am afraid; I am weary; I am discouraged.


Wednesday, September 5, 2012

Test Anxiety

November will mark ten years since we had the first of what would become a long string of anxiety provoking diagnostic tests. You might think that by now I am an expert in managing the stress surrounding these scans. You think wrong.

I have always been plagued by test anxiety, but careful preparation kept the nerves in check. Even now, with my school days long past, I awaken in a sweat from nightmares in which I neglected to study for some big exam—a scenario that never happened in real life. I was far too motivated by fear of failure to let that happen.

Now ACTs and SATs have been replaced by CATs and PETs. Unfortunately, studying does nothing to alleviate the anxiety preceding these tests. There is no way to prepare for this kind of test—and there is a lot more riding on the results.

Tomorrow we will walk the four blocks to the oncologist’s office for our two o’clock appointment. If we are lucky, the nurse will call us back to the inner sanctum by three. I’ll work on my crossword puzzle or read a book while listening for the doctor to approach the room. More than likely he will not yet have looked at the scans. I may hear him on the phone discussing results with the radiologist—usually bad news if it requires discussion. Finally, he enters the room. After two hours, or more accurately, two days of waiting, my stomach is upset. What will the verdict be? New Growth. It's back. We see something suspicious. Or those most welcome of words: All clear.

Will we pass the test? God only knows.

Monday, July 30, 2012

When FaceBook Becomes Toxic

I like FaceBook. At best, it is a marvelous marketing tool and a connector of people with similar interests. I love keeping up with friends, seeing pictures of old schoolmates, and hearing about activities of far-off relatives. I get new recipes, healthy living tips, and book recommendations.

At worst, it is a colossal waste of time, a tool for procrastination, and a source of tremendous stress. FaceBook exposure can even lead to a newly identified malady—Face Book depression. Although unrecognized by the American Psychological Association :) the Urban Dictionary defines it thus:

“When you're on FaceBook and see your friends looking like they're living amazing lives while you're feeling like you're just barely making it and you become sadder and sadder with each update you see.”

FaceBook provides a digital replacement for the much-maligned, often ridiculed, stereotypical Christmas newsletter. You know the kind. “We had to cut our trip to Rome short to make it home in time for little John’s graduation from Harvard. Hard to believe he’s our third to graduate magna cum laude from an Ivy League school. Deidre is enjoying married life and so grateful that she can be a stay at home mom since Gottfried sold the business to Dell last year. Both of the grandchildren will be in camps this summer—Hermione at Interlochen and Sebastian at the Duke Early Talent Identification Program. You may have read about Oliver’s grant for cancer research. We’re so proud of him. Just hoping they can all find time to visit us in the Hamptons this summer.”

Cancer patients and caregivers are particularly vulnerable to this “grass is greener” phenomenon. When your only vacation is to a comprehensive cancer center for scans or treatment, reading about tropical get-aways replete with poolside service and turned down beds, rubs salt in an already painful wound. When your exercise consists of running up and down steps to take care of your husband, watching your friends skiing down mountaintops is a bit hard to take.

If your mood takes a plummet after a stint on FB, you might try:

1. Limiting your exposure. FaceBook can be addictive. You don’t need to get on every day. Try every other day or once a week or you might even consider abstinence.

2. Clean out your friend list. If there are particular people whose posts rub you the wrong way, temporarily block them. The gag reflex is a good measure of which friends should go.

3. Find some new “friends.” Search for pages that have a positive effect. I, for instance, “like” Lung Cancer Alliance, Lungevity, Caregiver, WTF (Where’s the Funding for Lung Cancer), and other pages that are either informative or uplifting.

4. Don’t feel guilty if reading about others’ good fortune is difficult. There are times when you have to protect yourself by separating from anything or anyone who brings you down—intentionally or more often, thoughtlessly.


Tuesday, March 6, 2012

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.

Saturday, March 3, 2012

Confucius say: Don't throw out baby with bathwater.

If you read my last post, Chinese Medicine: Panacea or Poppycock, you might conclude that I fall into the Poppycock camp. I don’t. But neither do I belong the Panacea camp. It is difficult for me to accept a mode of treatment which is not based on the anatomical structure of the human body. However, I concede that some aspects of Traditional Chinese medicine are helpful in certain situations even if I can’t accept the theories and philosophies on which they are based.

For example, Qigong, a “TCM system of exercise and meditation that combines regulated breathing, slow movement, and focused awareness” undoubtedly helps with relaxation, flexibility, and strength whether or not it controls the flow of “chi.” The gentle exercise probably does not have a direct effect on cancer, but it does effect the overall well being of the patient—possibly even boosting the immune system. Should you try it? Why not? Can’t do any harm.

There is emerging clinical evidence that acupuncture is effective in alleviating some medical conditions—side effects of chemotherapy, osteoarthritis, migraines, depression, and many other pain related symptoms. Because acupuncture has been deemed safe and without complications, I wouldn’t hesitate to try it for pain control. However, it is not a cure for the underlying condition.

“Tui Na is a form of massage akin to acupressure (from which shiatsu evolved). Oriental massage is typically administered with the patient fully clothed, without the application of grease or oils. Choreography often involves thumb presses, rubbing, percussion, and stretches.” Again, I see no reason not to try this form of gentle massage. You don’t have to understand how it works to enjoy the benefits.

“Regarding Traditional Chinese herbal therapy, only a few trials of adequate methodology exist and its effectiveness therefore remains poorly documented.” Some of the herbs used in Chinese medicine are probably effective. No surprise, since many of our modern medicines are made from herbs. The problem with using herbs is in quality and quantity control. I have, in the past, taken herbs for energy, general well being, and minor health concerns, but I am always aware that they are not to be taken carelessly. Over the years I have tried the “herb a la mode” including cats claw, goldenseal, echinacea, ginkgo biloba, arnica, and a host of others. I no longer take herbs because I didn’t see any difference when taking them and, frankly, I got tired of taking (and paying for) so many supplements. I would not recommend herbal medicines for anyone with a serious disease.

Chinese food therapy according to Wikipedia is a practice in the belief of healing through the use of natural foods instead of medications. The underlying idea behind this practice is the balance of energy, Yin and Yang, through the use of “hot” and “cold” foods. This has nothing to do with temperature but rather the very essence of the food ingested. Who can deny the nutritional benefits of onion, garlic, ginger, tomato, mushrooms, and cucumber? But if my health practitioner asked me to eat a bird’s nest (that is the literal nest of a bird not the yummy noodle dish served in Chinese restaurants) or swallow broth made of duck gizzards, I don’t think I’d partake. Nor would I intentionally ingest ear wax, toe nails, or dandruff. But then “Chacun son gout” or “‘Everybody to their own notion,’ said the old lady when she kissed the cow.”

In my opinion, which is supported by controlled studies, the afore mentioned modalities of Traditional Chinese Medicine are harmless and possibly helpful in treating some medical conditions or or symptoms. I would not use them instead of conventional medicine for the treatment of cancer but would consider them as complements to a physician- directed cancer protocol. If you are a caregiver trying to reduce stress and maintain your health, you might consider these treatments.

Monday, February 27, 2012

Chinese Medicine: Panacea or Poppycock

“Chinese medicine refers to a broad range of medical practices sharing common theoretical concepts which have been developed in China and are based on a tradition of more than 2,000 years. These practices are a common part of medical care throughout East Asia but are considered alternative medicine in the Western world.”(Wikipedia)

Today’s proponents of traditional Chinese medicine seem to think that because it is old it is better. In reality, many of the theories on which it is based have been disproven by modern science. Others may not have been disproven, but they have not been “proven” to be effective in treating disease. I am amazed that rational people who would dismiss other ancient medical practices—voodoo, bloodletting, leeches, and trepanning, to name a few—are able to embrace medical practices based on the mysticism of an ancient culture. The theory in simplest terms on which Chinese medicine is based: Energy moves through meridians in the body, traveling to the organs. Illness results when this energy or “chi” is blocked. For healing to occur the flow of energy must be restored. Among the methods used to accomplish healing are cupping, qigong, moxtibustion, acupuncture, and various herbal remedies.

Medical education in most of China, until recent years, was inferior to medical education in Western countries. In fact, during the 1960s it was nearly non-existent. Admission to medical schools in the last decades of the 20th century required limited prior education. Some students had no more than a junior high education. Much of the curriculum was devoted to political ideology rather than rigorous medical training. However, doctors in the large cities were well trained and practiced conventional medicine.

Another interesting phenomenon peculiar to Chinese medicine was the institution of “barefoot doctors.” In 1968, in order to provide medical care to the largely rural population, farmers were trained to travel throughout their provinces giving basic care to the poor. Candidates were required to be high school graduates who then received three to six months training in a community hospital. The services they provided were basic and primarily preventive—first-aid for injuries, prenatal care, immunizations, childbirth, and health education. Because of the unavailability of many medications, they relied heavily on herbs and folk treatments. They were provided with a textbook, A Barefoot Doctor’s Manual, which gave instructions for the doctors when care in a modern facility was out of reach.

When the manual reached the Western hemisphere, “Chinese alternative medicine went from being a vague curiosity to being an all-out pop culture fad.”(Brian Dunning) People failed to realize that the information was written for lay “doctors” doing the best they could for a population that had no access to modern medicine or hospitals. The methods were not the first choice but better than nothing in less than ideal conditions.

If you are considering an alternative medicine for a life threatening disease like cancer, be sure you have all the facts. Natural doesn’t always mean better. Purge the poppycock.

Thursday, February 23, 2012

Alternative Treatments and Cancer

Complementary/alternative treatments, CAM, are becoming increasingly popular in the United States. Perhaps because we seem to be losing the war on cancer, many are seeking less toxic treatments with fewer long term side-effects.

Are you considering a “natural” treatment for cancer? What exactly are alternative treatments?

The U.S. government, on its website devoted to Complementary and Alternative Medicine, breaks down these therapies into five categories:

• Biologically-Based, such as herbal supplements, botanicals, animal-derived products, vitamins, proteins, probiotics and other organic approaches.

• Energy Medicine, such as veritable energy like sound, electromagnetic forces, and light or putative energy fields (also called biofields) which work to identify a body's own energy field, also called "chi." Alternative medicine professionals believe that when these biofields are disturbed, it causes illness in the body.
Examples of energy medicine are acupuncture, reiki, Qi gong, homeopathy, healing touch and intercessory prayer in which the prayers of one person help improve the health of another. These particular therapies are among the most controversial of the CAM therapies.

• Manipulative and Body-Based, such as chiropractic, osteopathic, reflexology, and therapeutic massage. These therapies rely on the structures and systems of the body, making adjustments to them to heal symptoms and medical problems.

• Mind-Body Medicine, which focuses on the interactions among the brain, behavior and physical health, such as meditation, yoga, biofeedback, tai chi, even spirituality.

• Whole Medical Systems that have evolved totally separately from what we consider to be conventional medicine in the United States. These systems have names like naturopathy, homeopathy, traditional Chinese medicine, Eastern medicine and Ayurvedic medicine. You will see some of these names already mentioned in the categories above. The distinction here is in the way they developed rather than the therapy itself.

These alternative treatments hold great appeal for me, as they do for anyone seeking a more natural approach to health. The problem is that there is little scientific based evidence of their efficacy. During the next few weeks, I will delve into these therapies to help you decide whether and how you might incorporate them into your cancer treatments.

Tomorrow, we will discuss, Chinese Medicine: Panacea or Poppycock?