Sunday, January 26, 2014

A Caregiver's Role--Then and Now

The role of a cancer caregiver is dependent on the patient’s survival time—a fact I try to keep in mind when offering advice. When I wrote Cancer Journey: A Caregiver’s View from the Passenger Seat, I was new to the job and unfamiliar with the territory. Since 2002, I have become, simply by virtue of my husband’s longevity, somewhat of an expert on caregiving.

Immediately following diagnosis, I was just trying to keep my head above water—without a plan to save myself or rescue Jim. I was frantically treading water trying to keep us afloat and not be sucked down by the undertow. Putting one foot in front of the other, I painstakingly stumbled through the cancer maze.

My job has changed as Jim’s disease has evolved—responsibilities ebbing and flowing with the course of the cancer. Caregivers wear many hats—cheerleader, researcher, patient advocate, dietician, bookkeeper, nurse, psychologist, pharmacologist, spiritual advisor, watchdog, coach, chauffeur, physical therapist, cook, prayer warrior, and pill pusher. Which hat depends on the needs of the patient at a particular time. Tasks change with the condition and status of the patient.

For the most part, caregiving is much less stressful than in the early years of our journey. Jim has been in treatment, chemotherapy or radiotherapy, at least eight times. Each time he was in treatment, I resumed my role as chauffeur and nurse. In the early years I didn’t leave his side during infusions. If it took seven hours, I was there—reading, writing, or sleeping. Lately, depending on the severity of the chemo, I don’t find it necessary to be with him every minute.

Hospitalizations remain exhausting but easier now that I speak Medicalese. Having learned the language, I am better able to communicate with physicians and staff. My role is clearly delineated and I take comfort in the regularity of the hospital schedule. I can sit at the bedside—a hand-holder, prayer warrior, cheerleader, and, when necessary, patient advocate. Someone else prepares meals, administers baths, and dispenses medications.

At home, Jim has assumed some of the duties that fell to me in the beginning. He does his own injections and dispenses his own medication—which may not sound like much but saves me fifteen or twenty minutes a day. He also orders his meds and haggles with insurance companies.

When he is in remission, my job is to keep him there. I research complementary methods, fix nutritious meals, prepare protein smoothies, vegetable juices, and try to reduce stress. I encourage him to engage in activities he enjoys (coaching, FCA, church, ball games) and eliminate stressful activities and events when possible. Weather permitting; I accompany him on a two-mile power walk.

I still go with him to doctor appointments and most scans—but not every one. However, I always am present for scan results. Even the most seasoned patient, should not endure that waiting alone. Yes, I still experience scanxiety but not quite as severe as before. I’ve learned that an “iffy” scan doesn’t mean a recurrence, that a recurrence doesn’t mean certain death, and that a biopsy isn’t always positive. I know that statistics are misleading, and even meaningless, when applied to an individual case.

One thing has remained the same from the day of diagnosis through the second primary cancer and the five cancer recurrences: When you love someone with cancer, the battle is primarily a mental one. I still fight fatigue, worry, and fear, but I am stronger than I believed I was. The human spirit is indomitable.

Tuesday, January 14, 2014

Restoring the Wounded Warrior

Surviving a stage IIIB lung cancer diagnosis for eleven years is remarkable; surviving five recurrences of stage IV lung cancer is miraculous. Inquiring minds want to know: What factors contributed to the miracle? Good doctors, good fortune, good genes, strong faith? All that and more.

In Cancer Journey: A Caregiver’s View from the Passenger Seat, published in 2010, I outlined the steps we took, or more accurately, stumbled upon, during the first seven years of treatment, remission, prostate cancer, and the first lung cancer recurrence. We didn’t know what we were doing but whatever it was worked.

Since the publication of the book, Jim has suffered four more recurrences.

2013 was a rough year. In the spring, he developed an antibiotic resistant infection, muscle wasting (common in advanced lung cancer), and a twenty pound weight loss, followed in June by his fifth recurrence. He looked bad and felt worse.

The doctors’ primary concern at that point was restoring his strength and energy. Following their recommendations with a few additions based on my research, we embarked on a protocol designed to rebuild his ravaged body and restore his health. I have benefited with him from the program which I too adopted, excepting, of course, the pharmaceutical aspects.

Jim continued throughout this time period to take the maintenance medications prescribed by his oncologists. This is not a formula for curing cancer. Nor is it a magic bullet that will keep the cancer from coming back. But when and if the cancer rears its ugly head again, we will be ready to re-enter the battle.

A note of caution: No one should engage in hormone supplementation (4 and 5) unless it is supervised and recommended by a physician for medical purposes. The other parts of the plan can be safely adopted by patient or caregiver. I will elaborate on each component in later posts.

1. Daily whey protein shakes with fruit and greens (berries, banana, pineapple, kiwi, spinach or kelp, coconut or almond milk, occasionally yogurt or peanut butter, and whey protein powder) We started , as ordered, with two a day but eliminated the nighttime smoothie after a few weeks. (You can only consume so much food.) We tried several different whey protein powders before settling on Jay Robb recommended by Susan Sullivan in our f.a.i.t.H. group. Jim developed an aversion to whey protein drinks early in treatment (2003) when Dr. Rios required them as a supplement during chemo. He still isn’t fond of them but we found the Jay Robb to be the most palatable in texture and taste. We like the vanilla and chocolate.

2. Fresh organic vegetable/fruit juice once a day. Combinations: Beet root, carrot, lemon, apple. Beet root, ginger, orange, kale, apple. Spinach, cucumber, pear, parsley. Kale, celery, cucumber, pineapple. Various combinations of any of the above with any other vegetables you like. Contrary to what you might believe, Jim does not thank me when I present him with these libations. The day may come when he takes it over-the-head rather than down-the-hatch.

3. Rest. Jim has been really good about not overdoing. The first weeks after radiation he stayed at home and slept. Gradually he added limited activity. He continues to get eight hours of sleep nightly with frequent naps.

4. Depa Provera (Testosterone) Injections (ordered by the oncologist) I had to drag him kicking and screaming but he finally agreed to take the shots—one a week for six weeks. After all the other toxic treatments he has endured without complaint, I’m not sure why he objected to this one. Was he afraid of pimples? Or that doping would keep him from the next Olympic Games? Not sure but he finally conceded. At the end of six weeks the testosterone injections were followed by a “booster” of hCG. Jim has completed two rounds of hormone therapy.

5. Human chorionic gonadotropin (better known as hCG) is produced during pregnancy. It is made by cells that form the placenta, which nourishes the egg after it has been fertilized and becomes attached to the uterine wall. The hormone HCG is sometimes prescribed for men to increase natural testosterone production during the course of therapy as a result of the stimulation of the testes by the HCG. According to our oncologist, HCG therapy can result in a continuing higher level of natural testosterone production by the testes after hormone therapy is completed. (Happily he didn’t become a soprano or develop a desire to wear my clothes.)

6. Pulmonary Rehabilitation Beginning in mid-August, Jim went to rehab three times a week, building endurance and restoring muscle mass. He started with forty-five minutes of moderate exercise and worked up to two hours. An 11/12/13 visit to the pulmonologist indicated that his breathing functions were the best they’ve been since 2008. After three months of rehab, he continues to walk and lift weights.

7. Walking As soon as he felt well enough we walked for two miles—on days he didn’t have pulmonary rehab. We probably average two times a week.

8. Protandim An herbal supplement containing curcumin, milk thistle, bacopa, Ashwagandha , and green tea extract to inhibit inflammation.

Perhaps Jim would have seen the same results if we had only followed a few of these interventions. We have no way of knowing which effected the desired changes in his health. I only know he gained weight, developed muscle mass, improved endurance, and increased energy—with no deleterious side effects. Jim is feeling better than he has in years—and so is his caregiver.