Caring for a loved One with Cancer

Thanks to guest blogger Faith Franz with the Mesothelioma Center for today's post.


Caring for a Loved One with Cancer


When a loved one is diagnosed with cancer, life changes. It’s a given.

It’s not just the patient, though, who has to adjust. Friends and family members often take on various caregiving responsibilities, and the patient’s health and wellbeing becomes a primary concern. For some caregivers, it becomes the primary interest – which can quickly take a toll on their own health and wellbeing.

It’s normal to want to do everything in your power to help your loved one. The average caregiver spends 20.4 hours per week providing care – roughly the same as a part-time job.

But providing medical care (i.e. transportation to doctor appointments and pharmacies), physical care and emotional support can become all-consuming. Roughly 70 percent of working caregivers say they’ve struggle in the office because of their caregiving duties, and 17 percent say their role has caused their own health to deteriorate.

On the flip side, one in 12 caregivers says their health is improved by caring for a loved one. And in caregivers who have sought support for their new role, their perception of their role is even more positive.

Emotional Support for Caregivers

Caregivers can find emotional support from a number of different avenues. Hospice programs and cancer centers often extend their counseling services to caregivers, while cancer support groups often welcome caregivers as members. Internet-based email groups and chat forums offer a virtual way to connect with others who understand what you’re going through.


Support systems address a wide range of topics. They often focus on caregivers’ primary concerns, like:

• Keeping their loved ones safe
• Managing stress
• Coming up with easy activities to do with their loved one
• Finding time for themselves


These groups serve as an invaluable source of mental and emotional support. They teach caregivers how to balance their own needs with the patient’s – which ultimately puts them in the position to provide higher quality care.


Author bio: Faith Franz has spent nearly two years researching and writing for The Mesothelioma Center. As an advocate for alternative medicine, she encourages patients to explore all of the treatment options that could potentially save their life.

Source:
Family Caregiver Alliance. FCA: Selected Caregiver Statistics. (2010). Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439

Radiation--Curse or Cure?

Jim’s physicians have chosen Tomo Therapy to treat his latest (fourth) recurrence of lung cancer. What is it and how does it work?

Radiation for cancer therapy utilizes ions that pass through tissue causing the death of the cells in their path in two ways: 1. apoptosis(cell death within a few hours of radiation) 2. radiation-induced failure of cell division which in turn leads to eventual cell death.

In 2003 following surgery and chemotherapy, Jim took 30 treatments of conventional radiation to eliminate the lesion that penetrated the lining of the lung. The procedure required multiple applications because the total amount of radiation had to be divided into small doses to minimize damage to surrounding healthy tissue. At that time the doctor told us Jim would not be able to take any more radiation to the thoracic area because he had received the maximum lifetime amount.

Thankfully, by 2008, when the cancer metastasized to a spot near the spine, doctors were using IMRT, or targeted radiation making it possible to hone in on specific areas. IMRT, intensity-modulated radiation therapy, is an advanced mode of high-precision radiotherapy that uses computer controlled linear accelerators to deliver precise radation doses to a malignant tumor. Treatment is carefully planned using CT images in conjunction with computerized dose calculations—all to conform with the tumor shape.

Simply, IMRT is a custom tailored radiation dose that maximizes tumor dose and minimizes the dose to adjacent tissues. Because of this innovation, Jim was a candidate for more radiotherapy which successfully obliterated that initial metastasis.

Tomo Therapy is an even more advanced type of IMRT. The patented machine divides the radiation beam into tens of thousands of beamlets delivered so that the intensity can be controlled throughout the tumor and delivered from all angles with great precision. (Conventional radiation allows penetration from only a few directions.)
”Tomotherapy is a quick and painless process, with daily treatments that usually take about 20 minutes. The machine is shaped like a large ring, with a bench — sometimes known as a couch — that slides through the ring’s opening. The radiation therapist positions you on the couch, usually on your back. Once treatment starts, you move slowly through the center of the ring while lying on the couch.”
Bottom line: The patient can take higher doses of radiation in fewer treatments with less damage to surrounding tissue.

Tomorrow jim will take the last of the 5 prescribed treatments. We are meeting with the oncologist to discuss whether he will want to follow up with adjuvant chemotherapy . Jim is praying that it won’t be necessary but we trust Dr. Rios to make the right call. He hasn’t steered us wrong yet. Pray for wisdom as he makes this decision.

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.

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.

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.

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.

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.