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.

November--A Month of Celebrations

In October we are surrounded by a sea of pink reminding us of breast cancer’s impact on the women of our community. Although I, along with millions of others, have reaped the benefits of the successful breast cancer awareness campaigns, I must admit I am a bit jealous that there isn’t corresponding hoopla when November rolls around. National Lung Cancer Awareness Month will arrive with no such fanfare for the disease that kills more women annually than breast, ovarian, and colon cancer combined.

Lung cancer remains the number one cancer killer among women—and men. Yet, when the pink ribbons disappear, when the pink coffee makers are gone from the shelves, when the pink wigs are put back in the closet, lung cancer’s colors won’t replace them. Lung cancer’s ribbon color is “clear”—like the disease itself unobservable, unnoticed, and without recognition. When attending cancer events where we are supposed to wear our colors, I am tempted to show up in cellophane. Bet that would draw some attention to the cause.

November has always been an important month in our family with several birthdays and Thanksgiving ushering in the holiday season. Since November 15, 2002, we have been marking another life changing event—my husband’s cancerversary. On that day, our lives were forever changed. Jim was diagnosed with advanced lung cancer; and I became a cancer caregiver.

I don’t like the term caregiver. I prefer to think of myself as someone who loves a person with cancer. With every cancer diagnosis, a cancer caregiver comes into being. There are millions of us across the nation providing varying degrees of care and support for a spouse, child, parent, or friend fighting the disease.

In addition to being Lung Cancer Awareness Month, November is the nationally recognized month that seeks to draw attention to the many challenges facing family caregivers, to advocate for stronger public policy to address family caregiving issues, and to raise awareness about community programs that support family caregivers. It is a time to thank, support, educate, and advocate for the more than 65 million family caregivers.

If you love someone with cancer, you are a member of this ever-growing group. Your contribution to your loved one’s recovery is vital but in the treatment process your feelings and problems are frequently overlooked. Watch for my blog entries over the upcoming weeks as I share my thoughts about loving and living with a cancer patient.

Fight Cancer with a PET Scan and a Pet

He’s a fat old cat with a dowager’s hump like an osteoporotic female. Since his owner’s death five years ago, he has been my faithful companion, following me from kitchen to computer, his flaccid belly swinging from side to side as he lumbers along. As did my mother before me, I’ve derived immeasurable pleasure from his presence. More importantly, he is contributing to my health and Jim’s cancer recovery.

Animals not only provide unconditional love, they may contribute to our healing. The simple act of petting an animal can take the focus off the pain and depression that comes with a chronic or terminal illness. Studies have shown that pet owners have lower cholesterol and triglyceride levels, lower blood pressure, reduced risk of heart attack, lower anxiety, reduced pain, and less need for pain medication. A recent study found that time spent with pets decreased anxiety and depression in cancer patients. Animals can make treatment less stressful.

When the day promises to be difficult, a pet gives its human reason to get out of bed in the morning. A walk with the dog not only helps the dog but gets the dog-owner out in the fresh air for exercise and provides the possibility of increased social interaction as you meet up with other walkers and dog lovers. The attention directed to the dog can be a welcome diversion from unrelenting discussions of your health.

If your fur baby is not a dog, don’t despair. Yes, you can take your cat for a walk. When my mother moved to Memphis, I reasoned rightly that walking her cat would be good for her. Because it is difficult to teach an old cat new tricks and this one had not ever been on a leash, I bought a cat stroller. No kidding. It is a light weight, vented, kennel on wheels—much like a fold up baby stroller. Unfortunately neither Mom nor Puddy cottoned to the idea. Mom was afraid the new neighbors would think she was a lunatic if they stopped to peek at the “baby” in the stroller. And the cat…well who knows what the cat thought? Although, his disdain was obvious.

It is true that with compromised immune systems there is the risk of contracting an animal borne illness, but the risk can be minimized, according to the CDC, if certain precautions are taken. Have someone else clean the litter box or wear gloves when cleaning out cages, kennels, or performing clean-up tasks. If scratched or nipped during play time, give the wound immediate attention with soap, water, and antibiotic.

The benefits of pet ownership for cancer patients far outweigh the risks. If you have a pet, you don’t need to be convinced of the therapeutic value. If aren’t a pet owner, you might want to give serious consideration to joining the ranks of the 72 million American households that include a pet. Why not complement your chemo with a prescription for a pot-bellied pig? Go for a kitty-cat cure or a rooster remedy? Maybe get help from a hedgehog? I can’t guarantee a longer survival, but I’ll wager your survival time will be greatly enriched.

Melinda Winchester 1 Year cancer survivor and Tudie

"She has been by my side through this whole fight. During chemo weeks, I would be in bed for about 48 hours straight and she was right beside me in the bed! She would go downstairs periodically for someone to let her outside and then she'd be right back upstairs. It's like she knew I was sick and she felt like she had to be on guard. We laughed and said her white coat is her nurses uniform!"

Survival Secrets for Caregivers

I have come to know many survivors and co-survivors (caregivers) over our eleven year journey with lung cancer. Those in both categories who survive well share certain qualities, the most important of which is resilience—the ability to recover quickly from illness, change, or misfortune; buoyancy. Some lucky people have built in resilience from innate personality traits or learned belief systems. But what if you’re not one of them? Is it possible to develop resilience?

When applied to caregivers the word “survival” has a different meaning than for cancer patients. You are not in danger of dying from your loved one’s cancer. But like the patient, you can benefit emotionally and physically from building resilience during your family’s battle with cancer.

Five Steps to Greater Resilience

1. Release. Admit you are powerless. Let go of the past. Let go of guilt.

2. Reframe. Psychologists call this step restructuring your cognitions. Build positive emotions. Search for meaning in your suffering. Practice gratitude. Exercise “benefit finding”—the ability to find positive meaning in a traumatic life event.

3. Reprioritize. Often this happens with no effort on your part. Sometimes with the onset of catastrophic illness, your priorities automatically realign. Your circumstances offer you new look at what is important. Others need to make a conscious effort to regroup.

4. Reconnect—spiritually and relationally. This is the time to make friends with God. You’ve heard it said, “There are no atheists in foxholes.” Likewise, there are few atheists in oncology waiting rooms. Restore and strengthen family relationships. Strong support systems are crucial to recovery.

5. Recharge. Rest. Relax. Be kind to yourself. Allow yourself to grieve and give vent to your very real emotions.

Sing Your Way to Health

I am a singer. This is not an appraisal of my ability or a fact about my profession but rather a description of my nature. Although none of my immediate family was musical, my grandparents hailed from Wales, the “land of song,” where according to my grandmother, everyone could sing. She said that before I could talk or walk, I hummed with her when she sang me lullabies.

Singing makes me happy but I didn’t know that it also makes me healthy. Recent studies have shown that singing has psychological and physiological benefits that help people cope with cancer. Researchers looked at a small group of cancer survivors who participated in choir singing for a period of 3 months. During that period survivors noted an improvement in:
• Vitality
• Social functioning
• Mental health, and
• Bodily pain

Survivors who participated also had a trend toward less anxiety and depression and improved lung function. Singing can have the same benefits as exercise—a release of endorphins resulting in stress reduction. Additionally, if you employ correct breathing techniques, you have the benefit of increased lung capacity. You can enjoy these benefits even if you sing alone—though group singing has the advantage of increased social interaction.

If you like to sing, look for opportunities to join a group—a church or community choir, Sweet Adelines or Barbershop Harmony Society. How about taking some voice lessons that you never had time for when you were younger? Not ready for the big time? Turn on the radio and sing your heart out in the privacy of your car. "Remember if it's not good enough for anyone esle to hear, just sing. Sing a song. Sing out loud. Sing out strong.”

Fourteen Ways to Know You are a Cancer Caregiver

1. You view a trip to an out-of-town cancer center as a mini-vacation.

2. You have a chemo day wardrobe.

3. Your Vera Bradley jumbo bag is packed for infusion days.

4. You sleep nude because your spouse is always freezing.

5. Sleeping nude has absolutely no effect on your spouse's libido.

6. You know all of the restaurants within a three mile radius of the cancer center.

7. The first words out of your mouth in the morning are “How do you feel?”

8. You have become adept at giving injections.

9. You don’t have to make a return trip to the vet to have the IV removed from your cat’s leg.

10. Your kitchen counter looks like a Walgreens pharmacy.

11. Your mastery of medical jargon causes people to assume you are a registered nurse or physician.

12. You wish your spouse was NERD-y (NERD-no evidence of recurrent disease)

13. You use more acronyms than the federal government. (CT, PET, EGRF, K-RAS, PSA, IMRT, NED, BMT, ABMT)

14. The “L word” strikes fear in your heart and it has nothing to do with homophobia. (Lump, Lesion, and Lymph Node)

Cancer Treatment Side Effects--The Gift That Keeps on Giving

Jim was diagnosed in 2002 with lung cancer. In 2008, he had a recurrence outside the lung which was treated with radiation. In 2009 he had another recurrence, this time to the bone. For that metastasis , in addition to four therapeutic chemo agents, he took Zometa, a bisphosphonate (like the drugs given for osteoporosis) used to build the bone in cancer patients.

In 2010, after nine months of treatment, which thankfully eradicated the metastasis, Jim developed osteonecrosis of the jaw—one of the less frequent and more unpleasant side effects of Zometa. We had excellent oncologists—none of whom had seen osteonecrosis resulting from Zometa treatment. While uncommon, it does happen. It was I who suggested to them the possibility of a connection.

Unlike menopausal women who have the option of taking bisphophonates to prevent osteoporosis, cancer patients don’t have much of a choice. They have to weigh benefits verses risks and if you have bone cancer the scale tips in favor of the benefits.

Osteonecrosis is painful (Amen) and difficult to treat (Amen again).

In Jim’s case, exposed bone around the back molars led to painful infection resulting in loosening of the teeth and necessitating a root canal. The oral surgeon and other experts whom we consulted predicted the eventual loss of the treated tooth and possibly surrounding teeth. Because healing problems would likely occur with the cancer-compromised immune system, the doctors decided against extraction of any teeth but warned us they would probably fall out on their own eventually.

Unfortunately the soothsayers were right. Three years forward and the prophecy has come to pass. Jim can’t chew on the affected side where one molar is giving up the valiant fight to retain its rightful place. Saturday night, he was awake for hours with an excruciating tooth/jaw/ear ache. We applied hot compresses, gave him oxycodone and finally dilaudid before he got any relief.

If you are taking Zometa:
1. Visit your dentist or prosthodontist on a regular basis.
2. Your cancer center may employ a dentist who specializes in treating cancer patients. Make an appointment.
3. If you have any pain in the jaw, face or teeth inform your oncologist immediately.