Early Detection Options for Breast Cancer

With news feeds blowing up about the story of Angelina Jolie’s double mastectomy, breast cancer is once again in the headlines. In my life, however, it is always in the forefront. My mother was just 44 years old when she was diagnosed with breast cancer and 50 when she finally succumbed to this awful disease. For nearly seven years, I watched and cared for Mom as she dealt with the frightening world of poking, prodding, nauseating medications and waiting, waiting, waiting for test results.

Given the conflicting information out there, young women like me — possible heirs to the breast cancer legacy — feel confused about our options for avoiding the same fate as our mothers. Jolie’s double mastectomy will hopefully spur more awareness and information. It also, however, may trigger panic and rash decisions among those of us whose mothers died from breast cancer.

Conventional medicine advises that we start getting annual mammograms at age 40. And yet, as I have come to understand, mammograms have a difficult time detecting cancer in small, dense, young breast tissue. In addition, some reputable studies seem to indicate that the ionizing radiation of a mammogram actually may cause cancer — ironically, through the very act of trying to prevent it.

To set the record straight on early detection options available, I spoke with conventional, complementary, and alternative medicine leaders, as well as with high-profile survivors of breast cancer. Their advice, I discovered, is relevant not only to young women like me, but to all women. According to the Centers for Disease Control and Prevention, breast cancer is one of the leading causes of death in women of all races in the United States. One in eight women will be diagnosed with invasive breast cancer in her lifetime, with approximately 211,000 women diagnosed and 40,000 dying annually from the disease.

The good news, says Lindsay Avner, founder and CEO of Bright Pink, is that breast cancer is “extremely treatable” when caught early. Like Jolie, Avner tested positive for the BRCA gene and chose to get a double mastectomy as a preventive measure. “As with any cancer, the earlier the diagnosis, the earlier treatment can begin, and the better the long-term outcome and survival rate,” confirms gynecologist Wendy Warner, M.D., director of Medicine in Balance and co-author of Boosting Your Immunity for Dummies.

Early detection of breast cancer implies that a tumor is fairly small when discovered. As a result, explains Julie Taguchi, M.D., an oncologist at Sansum Medical Clinic, a woman has multiple and less-invasive options available to her, when it comes to conventional treatment. Lumpectomy, with or without radiation, may eliminate the tumor, without the need for chemotherapy, a mastectomy, or a complete removal of the axillary lymph nodes. “The idea of early detection is to reduce the amount of treatment,” Taguchi explains, “with the understanding that we are trying to save lives and prevent unnecessary therapies.”

Celebrity actress and businesswoman Jaclyn Smith knows firsthand the importance of early detection. Like clockwork, she began getting annual mammograms once she turned 40. “When I respect someone’s opinion,” she says, referring to her team of medical professionals, “I do what they say.”

In her late 50s, Smith was diagnosed with breast cancer. “When they told me, I said, ‘Take off both breasts,’” she recalls. Her husband, however — a doctor whom Smith refers to as “a walking encyclopedia of knowledge” — advised Smith that a lumpectomy could be just as effective, given the early detection. After Smith and her husband looked into the matter, Smith decided to pursue that route, and she has been cancer-free ever since. Smith credits the annual mammogram with saving her life.

Some women, however, have had the opposite experience with mammograms. Award-winning actress Suzanne Somers reveals that she, too “obeyed all the rules.” After her 10th mammogram, she recalls, the doctor once again gave Somers a clean bill of health. He had just acquired a new ultrasound machine, however, and suggested that Somers give it a test run. “That’s where they found my large tumor that had been growing undetected for 10 years,” Somers recalls. “My 10 mammograms missed the tumor, which was against my chest wall; the ultrasound picked it up.”

Not only do women have conflicting personal experiences with mammograms, but experts agree that mammograms are a mixed blessing. “At this time, mammograms are the most cost-effective and widely-available tool for breast cancer detection,” says Chandini Portteus, vice-president of Research, Evaluation and Scientific Programs for Komen Foundation, “but we know they’re not perfect. They may miss cancer or may report a false-positive result.”

In addition, some experts caution, mammograms may exacerbate the problem of radiation, which is a recognized cause of breast cancer. “I don’t knock mammograms,” says Warner. “I just don’t understand why we primarily employ something that uses ionizing radiation to look for something that is caused by ionizing radiation.”

Joseph Mercola, DO, a leading integrative medicine specialist, is especially concerned about the radiation from tomosynthesis, a three-dimensional (3D) mammography. A new technology that recently was approved by the FDA, tomosynthesis was designed to help doctors get a better picture of dense breast tissue, particularly in younger women, in the hopes of decreasing the number of false-positives. “The problem,” Mercola says, “is that 3D scanning requires multiple X-rays, exposing women to 1.5 to 3 times more radiation, depending on how many total exposures she gets.” [1] [2] [3]

According to Otis Brawly, M.D., chief medical officer of the American Cancer Society, opting for a standard mammography or the newer tomosynthesis basically comes down to a batting average: “Mammography may cause a few cancers, maybe even a few deadly cancers,” he says, “but it leads to a net of saving lives.”

A cost-benefit analysis of mammography and tomosynthesis, he continues, must take into consideration where a woman is in her life: “Both are better tests in women with older breasts. They are better [for] women in their 60s, compared to women in their 50s, and better for women in their 50s than women in their 40s, and not very good for women younger than 40.”

Mammograms “can’t see through dense breasts, so they are basically worthless” for women under 40, concurs surgeon and breast cancer patient advocate Christine Horner, M.D., a former spokesperson for the American Cancer Society in Kentucky. In addition, she continues, research indicates that when women are in their 20s and 30s, the breast tissue is “far more radiosensitive” than when women are older. She cites a 2012 European study indicating that for women under 30 and BRCA1 positive (genetically predisposed to breast cancer), diagnostic radiation increases the risk of breast cancer risk by 90 percent.

Clearly I am not getting any kind of mammogram in the foreseeable future, though I may get tested for the BRCA-1 gene, as did Jolie. Meanwhile, I am pleased to have discovered that the medical world has a few radiation-free tricks up its sleeve — useful, albeit not foolproof, in early detection of breast cancer: magnetic resonance imaging (MRI), ultrasound, and thermography. I plan on exploring these diagnostic options in a future blog post.

Meanwhile, regardless of what diagnostic test a woman chooses, experts strongly advise three action steps for early detection and successful treatment of breast cancer:

1. Know your body.

“Women should become familiar with the way their breasts normally look and feel,” says Portteus. “Knowing what is normal for you may help you see or feel changes in your breasts.” Brawley advises keeping in mind that most women who discovered cancer through self-examination did so through simple awareness and cursory checks, as opposed to monthly self-exams.

2. Build a medical team you trust.

Avner emphasizes that it is critical for women to partner with doctors they trust, so as to develop early-detection and risk-reduction strategies tailored to their individual needs. Early detection, Brawley adds, must be followed up with effective medical treatment.

3. Develop healthy lifestyle habits.

“Early detection is important,” says Warner, but “true prevention is more important.” Experts advise eating nutrient-dense foods, exercising regularly, managing stress, and getting ample sleep. By optimizing your health and wellness, you will reduce your chances of getting cancer in the first place. As the old saying goes, the best self-defense is avoidance.

References:

[1] http://www.usatoday.com/story/news/nation/2012/10/09/3d-mammogram-tomosynthesis/1615719/

[2] http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/MedicalDevices/MedicalDevicesAdvisoryCommittee/RadiologicalDevicesPanel/ucm226757.pdf

[3] http://www.radiologytoday.net/archive/rt1111p32.shtml

Burned Out on Caregiving? Take Some Vitamin N!

While many of us are busy ramping up our doses of vitamins B and D, says Anasuya Basil — a holistic nutrition coach and practitioner of craniosacral therapy and acupressure — we are overlooking what is perhaps the most important “vitamin” of all for unplugging and recharging our batteries: N, which stands for nature. Considering that caregivers are especially prone to burnout, and that Basil’s “Nurture in Nature” retreats have been successful in rejuvenating caregivers (Bonus: They are half an hour from my house!), I asked Basil to share her wisdom on how to inject a little more N into one’s life, especially for those currently in the throes of looking after a loved one with an illness.

Tory Zellick: Why is nature an important component of maintaining wellness?

Anasuya Basil: Our lives today are very different than the lives of our ancestors. They had to master interactions with animals, plants, and changing weather, so as to survive, whereas we need to be skilled at navigating freeways, surfing the Internet, and utilizing technology, so as to function. Even though our lifestyles are very different, the way our bodies and brains work has barely changed over the millenia. Quite simply, the human body is wired to connect with nature. For this reason, when we spend time outdoors, our brains function better, and our moods and health improve.

Frances E. Kuo — director of the Landscape and Human Health Laboratory at the University of Illinois — evaluated hundreds of studies measuring physiological changes of people spending time in nature and discovered that connecting with nature reduces anxiety, improves impulse control and focus, shortens recovery time after surgery, and enhances immune functioning and blood sugar balance.

In addition, the medical community of Japan has partnered with the government and parks departments, offering a therapy called Shinrin-yoku, or “Forest Bathing.” Through this program, participants gather outdoors in state parks and do simple meditation and breath exercises based on Shinto and Buddhist practices. The exercises are designed to open up the senses to the natural surroundings. These programs have proven to lower both blood pressure and cortisol, a stress hormone. Anxiety and depression from overwork are huge problems in Japan, which has the third highest suicide rate [in the developed world]. Forest Bathing has been found to counteract these stress-related problems.

TZ: What are some ways that nature retreats are especially important for caregivers?

AB: Caregivers need to recharge their batteries. If they do not take some “time out” to nourish themselves, they may damage their own health. In addition, if they do not make a point of nurturing themselves, they may burn out and not be of any use to anyone — including the loved ones for whom they are caring. Nature retreats allow caregivers to deeply rejuvenate and obtain new insights and fresh perspectives. Caregivers can return home revived, with new ideas of how to manage stress and have more fun in their daily lives.

TZ: Are there particular advantages to experiencing nature in a group setting?

AB: Given that our society does not value relaxing in nature as much as it does being “productive” at work or home, we may have a hard time allowing ourselves to release into the nature experience on our own. The process is much easier with a supportive group, especially considering that we are social creatures. When we watch other people drink in nature, we come to understand that it is both acceptable and desirable for us to do the same.

TZ: Why do you emphasize creativity exercises at your nature retreats?

AB: The Society for Arts in Healthcare estimates that [about] half of American hospitals have creative arts programs in place, serving patients such as children with cancer, women with diabetes, adults with Multiple Sclerosis, and so on. Research indicates that participants experience a decrease in stress and anxiety and an increase in numerous positive emotions. When we engage in the creative process, we enter a mental state where worries fade into the background. We experience a sense of “flow,” as we focus on the creation emerging from our hands.

Not only is personal self-expression a great stress reliever, but anyone can be creative. Everyone has something to say! So at my retreats, we take photographs or write poems, so as to capture moments of beauty or places of interest — which can be as simple as a river sparkling in the sun, a squirrel eating a nut, or a fellow retreat participant smiling under a tree. We also write in journals, to release our inner thoughts, and we create scrapbooks and collages, using decorative tools like rubber stamps.

All of these creative endeavors come together in the final product of retreat journals, which participants take home. Not only do these journals serve as an ongoing reminder to take time out and nurture oneself, but they serve as a boost to self-esteem. People feel proud to hold something they made with their own hands, no matter how small a work it may be.

TZ: Many caregivers find it difficult to take time out for a retreat. What are three quick-fix ways that caregivers can get a nature boost or get creative on their own?

AB: One practice is to set your phone timer to 15 minutes, then walk outside with a pad of paper and a pen. Take notes on anything that looks, sounds, smells, or feels either beautiful or interesting to you. When you come inside, take a few minutes to type out the notes, in the closest you can get to “poetry” form. Print out the document and post it where you can see it, so that it serves as a reminder of your experience.

Another practice is to find a nature “sit-spot.” This is a very convenient outdoor place, such as a tree stump in your backyard, which you visit on a regular basis, for anywhere between ten minutes to one hour at a time. This spot becomes your home in nature, where you relax and notice the birds, clouds, moon, insects, and animals.

A third practice is to make handmade cards. These can be completed in a short amount of time, with a few simple supplies. Use a couple of rubber stamps and inkpads, as well as colored and patterned papers. You can keep the cards simple or embellish them with buttons, ribbons, and cut-out images from magazines. Don’t be overly-concerned with the end result. Instead, focus on the colors, textures, and shapes that feel good to you. Make it a game you play with your senses! The added benefit, of course, is that you’ll have a supply of cards to give to your loved ones, for any occasion.

TZ: What are some ways that caregivers can include care recipients in nature outings and creative projects, taking into consideration the limitations and special needs associated with an illness?

AB: Drive to a handicapped-accessible park, and go for a slow and gentle walk through nature, as far as your loved one can move comfortably. If walking is too challenging, you simply can sit at a bench or in a wheelchair, at a pretty outdoor spot. If it is difficult for your loved one to be outdoors, drive to a beautiful nature setting and stay in the car — for example, in a beach parking lot facing the ocean. If your loved one is unable to leave the bed, move that bed as close as possible to the window, and leave it open for as long as is tolerable. Fresh air is rejuvenating. In addition, you can photograph and videotape your own jaunts in nature, then have some quality time sharing these images with your loved one.

TZ: How might spending time together in nature or in a creative endeavor improve the quality of relationship between caregivers and care recipients?

AB: Spending time together outside, simply noticing simple wonders of nature, can take the pressure off talking and remove the focus away from illness or disability. Because nature is calming to the mind and uplifting to the mood, it can shift both the caregiver and care recipient into a place where simply being present together feels rewarding.

TZ: How have nature and creativity helped you with your own life?

AB: When I was a little girl, my mother showed me how to be comfortable in nature, and she taught me to notice the plants and animals. Throughout my childhood, I returned to nature whenever I needed some peace and solace. During that time in my life, I also loved to draw, paint, and make things. So as an adult going through difficulties, such as a painful divorce, I consciously have made an effort not only to spend time outdoors but also to pursue creative hobbies. Doing so has made a huge difference in my life — keeping me balanced, grounded, and joyful through life’s ups and downs.

3 Mother’s Day Gift Ideas for Mothers in Cancer Treatment

Mother’s Day is right around the corner. Do not allow the dark veil of a cancer diagnosis or the negative side effects of cancer treatment put a damper on your Mother’s Day celebrations! If your Mother is coping with the “Big C” and undergoing treatment, the beautiful bouquet of flowers you send her every year may be too potent of a scent, or she may not have a stomach for the annual box of chocolates. Here are a few other suggestions of gifts that can make Mother’s Day extra special for a mother who is undergoing cancer treatment:

Make Memories
Cancer is a diagnosis that affects the entire family, so try thinking outside the box this year. Instead of purchasing Mom a tangible gift, begin a new tradition of creating a new fond memory. True, Mom may not be able to go bungee jumping or skydiving, but local venues are sure to offer fun classes like pottery throwing, tile making, stained glass or water-color painting. Attend a class as a family.

It’s Make-Over Time!
The loss of one’s hair, eyelashes and eyebrows can be overwhelming. Think about purchasing Mom a day package at a reputable spa that uses organic or chemical-free products. In addition, helping her learn how to pick the appropriate shades of makeup and apply the makeup properly can be a game-changer. I know my mother was never one to wear makeup prior to her cancer treatment, but after losing both her hair and her breasts, the option to apply makeup helped her feel “feminine.” Include a nice facial or massage,* so Mom can start her new beauty regimen with clean pores and relaxed muscles. Just be sure to opt for chemical-free products throughout, so as not to add cancer-exacerbating toxins to Mom’s system!

*Side note: If Mom has had any lymph nodes removed, be sure to ask if there is a massage therapist certified in oncology massage.

Build a Scrapbook
Remember in preschool when you made a picture frame out of popsicle sticks and tissue paper? An adult version of the same idea is something that will make Mom smile every time. Allow each family member to create a few pages of a scrapbook full of fun and family memories. Leave extra pages so you can continue to add to the scrapbook as a family.

It is important to remember that Mom may not be feeling in tip-top shape at the moment. Do what you can to make her day a little brighter and a little easier, and make sure you stay positive: Focus on what she can do, not on what she can’t. Happy Mother’s Day!

Rosanna Arquette Guides Me on Coping With Grief of Mother’s Day

For those who have lost a loved one, holidays can trigger grief. Mother’s Day is particularly difficult for me, because I no longer have my mother here to physically spend the day with. I still have my brother and father around, and my dad does the best he can to be both parents these days. But let’s be honest, there are things a gal does not want to discuss with her dad! Sometimes you just need your mama.

My mother was a mom’s mom: She loved to cook, dote on her kids, and take in every stray animal or child around. As each anniversary or holiday passes, my family sets out to keep her traditions alive, and we strive to build new ones. On her birthday, the anniversary of her passing, and Mother’s Day, we cook all of her favorite foods, open a bottle of her favorite wine, and celebrate her life.

This month, I was on a mission to find out how others cope with the same loss. I had the honor of speaking with award-winning celebrity Rosanna Arquette, regarding her own mother’s life and passing. Although it has been 15 years since her mother succumbed to breast cancer, you can hear in Arquette’s voice just how raw the loss still is.

One of the most difficult parts of the loss, Arquette confides, is “not being able to call her.” As we age and life continues, we want to seek the counsel of our mothers. “I am getting close to the age my mom was when she died,” Arquette reveals. “My challenge right now is wishing my mom was here for all the advice.”

Arquette emphasizes that she ached to call her mother after sending her own daughter off to college. The inability to call my mother has been very difficult for me as well. It is a shot to the gut when I almost pick up the phone to share something with my mom,only to realize, “Oh wait, I can’t.”

While their mother-daughter relationship was tumultuous at times, Arquette looks back fondly on her mother and the values that her mother passed along. Taking care of five children, with a struggling-actor husband, Arquette’s mother ingrained a strong sense of work ethic into the children and taught the importance of caring about humanity. “She was a powerhouse when it came to helping people,” recalls Arquette, sharing that her mother’s mottos were, “We’re here to help others” and “If you have it, share it!”

Arquette’s mother was active in the civil rights movement of the 1960s, sheltering war protesters and organizing peace marches. Arquette recalls meeting Martin Luther King, Jr. in the back of a truck, during one such march. “He had a powerful, enigmatic energy,” she says. It is no coincidence, Arquette continues, that all of her siblings are involved in various forms of social justice activism — a testament to their mother’s legacy.

Regarding her mother’s journey living with breast cancer, Arquette laughs about being raised “hippy kids” and reveals that, true to form, her mother rejected the option of getting a mastectomy. “She thought Western medicine makes people sicker and sicker,” Arquette says, adding, “She had a good quality of life. She only did chemo once.”

As it so happens, Arquette’s upcoming movie is about a mother in the process of dying. “Things come to the surface,” she says about directing the upcoming film. “It’s grief.” As for her own coping strategies, Arquette turns to meditation. “It gets me out of the rabbit hole of negativity that becomes more negativity,” she says. “You can see the energy of it.” During her meditations, she reveals, she talks to her mother — keenly feeling her mother’s presence and hearing her mother’s responses.

Years after her mother’s passing, and with a grown daughter of her own, Arquette is conscientious about her own health. She is careful to eat nutrient-dense food, exercise regularly, and remain positive about life. Her regimen includes juicing and eating a mostly-vegan diet, although, she adds mischievously, “sometimes dairy sneaks back in.”

It is important to tune into our bodies, Arquette emphasizes, saying “Your body will tell you what you need.” She also speaks at length about importance of practicing gratitude, being kind to others, and letting go of resentment. “We need to constantly work on our stuff,” she muses.”It’s all about love. Come from love — be in that place.”

Talking about my own mother to others, “talking” to her when I need guidance, and maintaining her traditions, have always helped me deal with my loss. Although I nonetheless miss my mother every single day, I feel a sense of calm when Arquette assures me that “every year, it does get a little bit easier [to cope].” Working through death, Arquette says wisely, “is no different than working through life.”

I could not agree more.

Power Through Parkinson’s

When former NBA star basketball player Brian Grant was diagnosed with Parkinson’s, he worked hard to hide the disease from public view. “I was too scared to go on interviews for anchor jobs or jobs where I could maybe be a commentator or radio host,” he recalls.

Terri Peacher-Ransom, a research advocate with the Parkinson’s Disease Foundation, similarly recalls how her husband attempted to keep the disease a secret, even within his own family. “He wanted to hide it from our children,” she remembers. “I had to convince him that they needed to know, despite their ages, since they too would be involved in his care — if nothing but to help with a glass, open a bottle, or assist him in some other manner.” While her husband eventually opened up to his children, he continued to hide the disease from his siblings — which, Peacher-Ransom notes, “alienated him from them and family functions.”

Parkinson’s disease is a chronic and degenerative neurological disorder that results in the death of brain cells — specifically, those releasing dopamine, a neurotransmitter. The progression and symptoms manifest differently in each patient. Motor impairments result in symptoms including tremors, slowed movement, postural instability, and loss of balance — which, among other things, can lead to frequent falls. Additional symptoms include mood disorders, such as depression and anxiety, sleep disturbances and fatigue, speech and swallowing problems, and cognitive impairment ranging from mild memory difficulties to dementia.

As of today, there is no known cure for Parkinson’s, which for Grant is one of the most troubling parts of the disease. “It’s something that I’m going to have to live with, and it will never go away,” he says. “Emotionally, that’s devastating.” There are pharmaceuticals that reproduce or prevent the breakdown of dopamine, but according to leaders at the Michael J. Fox Foundation for Parkinson’s Research, “current medications available today only address the symptoms of Parkinson’s disease, while the underlying disease continues to progress.”

During the early course of the disease, pharmaceutical treatment “can allow a person with Parkinson’s disease to return to a near-normal life,” says James Beck, Ph.D., Director of Research Programs at Parkinson’s Disease Foundation. He adds, however, that as the disease progresses, the doses and frequency of the drug administration need to be increased — leading to complications that include uncontrolled movements.

According to Kulreet Chaudhary, M.D., Director of Neurology at Wellspring Health in Scripps Memorial Hospital, the optimal response to Parkinson’s disease is adopting an attitude of “life improvement” instead of disease management. “A lot of the changes I make for my patients makes them more active, more social, more involved in their communities,” she says. “Health can be fun, and certainly the rewards of taking steps towards improving your health bring you more joy.”

The conventional approach to treating Parkinson’s disease, she explains, is starting patients on medications, then adjusting those medications during semi-regular follow-up visits. An integrative approach goes a step further — building on the conventional foundation, then exploring what else can be done to help manage symptoms and improve the patient’s quality of life. Protocol includes yoga and tai chi to improve balance, healthy dietary choices to reduce fatigue and constipation, and meditation and exercise to help lift depression.

The Michael J. Fox Foundation, which emphasizes the value of exercise, notes that those who stay active and relatively limber “can help improve their balance and motor coordination.” Beck concurs that diet is important in preventing and managing Parkinson’s disease. “Evidence suggests that a Mediterranean-like diet is not only associated with a lower risk of Parkinson’s disease, but it is also the recommended diet for those who have been diagnosed with Parkinson’s disease,” he says.

Shortly after being diagnosed with Parkinson’s, Grant began a naturopathic regimen. “I attribute my slow progression [of the disease] to a lot of that regimen,” he says. “I also participate in the ‘Powering Forward Boot Camp,’ which is a really tough workout.” Grant additionally has stopped drinking and even went vegan for a period of time. “I definitely am more consciously aware of what I put in my body, as far as the types of foods and drinks I consume,” he says. “It’s hard, you know,” he admits. “I’ve got a sugar addiction with cookies and sweets.”

To help loved ones with Parkinson’s adopt healthy lifestyle habits, Chaudhary advises, make the changes together. “If you want to encourage him/her to start yoga or tai chi to help with balance, then do it too,” she says. “If there is room for improvement in his/her diet, make changes in yours too. It is hard to make changes when you are sick, and even harder to do it alone. But when you have a loving, compassionate partner making those changes with you, the changes don’t feel so daunting.”

Make changes gradually, she advises. Regarding dietary changes, for example, she suggests initially moving away from processed foods and replacing them with fresh foods that are nutrient-dense. Next, she says, eat less meat and move towards a more plant-based diet. “This doesn’t mean being a vegetarian,” she emphasizes, “but just consuming 25-50 percent less meat, especially processed red meat.” Lastly, she advises, look for ways to increase fiber in the diet — which, she acknowledges, may happen naturally through increasing vegetable and fruit consumption.

For patients and caregivers alike, experts note, it is critical to build a supportive network of friends, family, and health care professionals, so as to cope most effectively with the disease and its impact. “A doctor doesn’t always know what community resources you may benefit from, so go out and look for yourself,” Chaudhary recommends. YMCAs may offer pool therapy; public transportation systems may offer free rides for patients with limited alternatives; and local colleges may offer free or affordable nutrition courses, she notes. “If your time is limited, take advantage of online communities that will allow you to connect with others who share similar caregiving issues and challenges,” leaders at the Michael J. Fox Foundation further recommend.

Most importantly, advises Grant, continue doing whatever gives you joy in life. “Don’t be scared that you can’t do things the way you used to do them,” he says. “Just do them to the best of your ability, and be grateful.”

Inspiration Around Every Corner: Have A ‘Can Do’ Attitude

As a young child, even into my early adult years, I was plagued by the idea that I must do everything right and play life by The Book: stay within social boundaries, get perfect grades, go to college, graduate in four years, find a man, get married, start a career and family, then retire to Florida to live out your final days. Done. The summer before college, I spent the better part of my days on the Sacramento River, kayaking with my best friend, dreaming of what life would be like if we just did not care what everyone else thought. What if we did not go to college? What if we had gotten C’s in English class instead of A’s? What if we said “F*&% it!” and spent a year traveling Europe — you know, living our lives? Even at 18, I was questioning why our society seems to work now so we can live later, always making excuses about why we cannot do something.

Shortly after my mother’s initial diagnosis of breast cancer, I made the conscious decision to stop playing life by this imaginary book. After my family was told my mother’s cancer was in remission, I dropped everything, moved to a tropical island and tried to do what I wanted. My mom had played by The Book, and from my vantage point, it had not seemed to work out for her. She had gotten her first of two children off to college and finally was going to start living life for herself. Then she got sick.

Over the past several weeks, I have been inundated with inspiration to get out and live. While speaking with Donna Cardillo, RN, I was struck by the repeated theme that emerged, as Cardillo discussed caring for her husband with Multiple Sclerosis (MS): “It’s about doing what you can do, not focusing on what you can’t,” she said. Later, while discussing MS with Montel Williams, Williams poignantly stated that managing the disease is all about “getting busy living.” Both statements, though simple, were profound. How many of us resign to the fact we can’t do something?

“Can’t” is not a word in Jenny LaBaw’s vocabulary. At just six months old, LaBaw suffered a bout with meningitis that left scarring on her brain, which eventually led to epilepsy. At age 14, LaBaw had grand mal seizures — those which affect the entire brain. Doctors advised LaBaw that if she was not able to get the seizures under control, she might never drive, have children or live on her own. LaBaw subsequently began taking epilepsy medication. With the support of her parents and brother, she learned to cope with the side effects and live life as any other young, driven child. “I don’t remember my parents ever ‘babying’ me or treating me as if something was wrong,” recalls LaBaw, “I was always encouraged to go out a play, just like any other kid.”

After four years of collegiate soccer and track for Cornell College, LaBaw discovered CrossFit. During her first year in the sport, she placed 6th overall in the 2011 Reebok CrossFit Games and took a first place finish in the 2012 NorCal Regionals. Sponsored by names like Reebok, RockTape, Primal Blueprint and Pure Pharma, LaBaw then began training for the 2013 Reebok CrossFit Games, with the same determination as she had in years past. The day before the first workout, however, LaBaw broke her foot in a bicycle accident. A bystander ran to ask if she was okay and found LaBaw sitting on the ground, dumfounded. “I just broke my foot!” LaBaw cried out, devastated. “I am a professional athlete. I. Need. My. Foot!” LaBaw admits thinking she was “done.”

With only a few days to complete the first of five workouts (at a pace of one workout per week, for five weeks), LaBaw had a decision to make. After consulting her team, including her trainers, orthopedist and boyfriend — professional water skier Marcus Brown, LaBaw decided to give it a go on one foot.

CrossFit Open Workout 13.1 was grueling. Each competing female was instructed to proceed through the sequence below, completing as many repetitions as possible in 17 minutes:

· 40 Burpees

· 45 pound Snatch, 30 reps

· 30 Burpees

· 75 pound Snatch, 30 reps

· 20 Burpees

· 100 pound Snatch, 30 reps

· 10 burpees

· 120 pound Snatch, as many reps as possible

LaBaw completed most of the sequence, and immediately, word spread throughout the CrossFit community. People with the spectrum of athletic abilities flooded LaBaw’s email inbox with letters, thanking her for the inspiration and sharing stories of how she motivated them to work a little harder, get around their limitations,and have a can-do attitude. “I never thought I would be inspiring so many people,” muses LaBaw. “It is truly heartwarming.”

After five weeks of competing on one foot, LaBaw placed 301 out of 1609 competitors in the Northern California region. She emphasizes that while she always has had “an internal drive to try to be better than [she] was the day before,” she only works around a limitation, not through an injury. “It is important to listen to your body, because it will tell you what it needs,” she says.

Sometimes it takes the determination of another to show us that maybe, just maybe, we can do a little more than we think. In my own moments of weakness as a caregiver, I wanted to throw in the towel, turn my back and call it a day. But then I watched my mother, whose body was wrecked with cancer, getting up every single morning and enduring a never-ending barrage of poking, prodding and ingesting of nasty medicine, without one word of complaint. Seeing her reminded me that I was just indulging in a self-pity party. If she could power on, I most certainly could as well.

Whether you are the caregiver, patient or medical professional dealing with an illness, get curious about what budge room there is in whatever challenge you are facing. As Emmy award-winning talk show host Montel Williams said to me recently, while discussing his Multiple Sclerosis diagnosis, “The only thing you can control is how you respond to what happens to you on any given day… I’m about living. I am going to live every day. I don’t face a day that I say, ‘I can’t.’”

LaBaw similarly reminds us that we always can work around obstacles, by coming up with creative alternatives. In addition, she notes, if we have a bad day, there is always another one tomorrow.

Family Caregivers Are Central to the Clinical Trial Experience

According to leaders at pharmaceutical corporations, university research facilities, caregiving organizations and clinical trial associations, caregivers are an under-valued asset to the clinical trial experience. That’s why John Schall, CEO of the National Family Caregivers Association, has this advice to caregivers: “Insinuate yourself into the process. Make it clear to staff that you are the caregiver. Make suggestions that it be documented in the patient’s chart that you are the caregiver and want to be a part of the conversation… Very much put yourself in the middle and make it known you are a part of the process.”

The caregiver is critical to the success of a patient’s participation in a clinical trial, Schall emphasizes, because the caregiver is the closest and most constant observer of the patient. “It is important that the caregiver know what side effects, physical changes and cognitive changes to be watching for,” he says. Even if a change does not seem like something to report, he notes, it may in fact be critical.

This lesson is one I learned the hard way: When my mother was in a clinical trial, constipation was one of the side effects of her medication — leading to her regular use of over-the-counter laxatives. Toward the end of the trial, my mother began losing bowel control. Because the change was easily attributed to the laxatives, I never considered sharing the matter with the clinical trial leaders. As it turned out, however, the loss of bowel movement actually was a sign that her cancer had progressed.

According to Sue Sheridan, Director of Patient Engagement for Patient-Centered Outcomes Research Institute (PCORI), clinical trial leaders “need to encourage patients and caregivers to speak up,” so as to help caregivers effectively support patients through the clinical trial experience. “The caregiver and patient need to know what questions to ask and what to be looking for,” she emphasizes.

Gail Hunt, President and CEO of the National Alliance for Caregiving, further recommends that clinical trial leaders take the following steps:

• Speak not only in patient-centered language, but also caregiver-centered language. For example, when discussing protocol, ask the caregiver whether she is able and/or willing to perform certain duties.

• Support the caregiver in figuring out the most effective and realistic way to comply with protocol requirements.

• Explain the medical jargon used throughout the clinical trial. The caregiver needs to understand what the researcher is saying, so as to effectively communicate this information to the patient.

• Guide the caregiver on being an effective observer — explicitly stating what to look out for, how to identify it and how to respond to it.

• Prepare the caregiver and patient for the emotional aspect of ending treatment, at the conclusion of a clinical trial.

Hunt in fact takes caregiver involvement one step further, asserting that caregivers and patients alike need to participate in the very design of a clinical trial.

“We are finding that [caregivers] are asking some of the best research questions,” concurs Sheridan. Clinical trial leaders need to infuse caregiver wisdom “through this whole research process,” she adds, “to help produce information that is important to caregivers and patients.”

When I asked about the existence of caregiver training programs, clinical trial and caregiving leaders revealed that no such programs are formally in place at this time. They agreed, however, that such programs should exist, to help optimize the caregiver’s role and, as such, the effective involvement of patients.

“Daily diaries of pain and physical symptoms get pretty complicated,” elaborates Sean Mackey, Chief of the Division of Pain Management at Stanford University. Caregivers not only need to ask about and record all this information, he says, but they also need to ensure that patients take their medications at proper times throughout the day.

“There is an old adage, ‘Bad data is worse that no data,’” Mackey continues. “The worst thing that can happen with these clinical trials, from a [research] standpoint, is getting inaccurate data.” For this reason, he emphasizes, it is critical to properly train caregivers in managing patient information during the clinical trial process.

As someone who stumbled my way through caregiving a loved one in a clinical trial, I could not agree more. When someone’s life is on the line, we must leave as little as possible in the hands of trial-and-error.

Got MS? Focus on What You Can Do, Not on What You Can’t

A week after returning from a snowboarding trip, Emmy-award-winning talk show host and New York Times bestselling author Montel Williams recalls how, 15 years ago, a doctor not only diagnosed Williams with multiple sclerosis (MS) but also advised Williams that he would be confined to a wheelchair within four years. “How dare that person look at me for an hour and think he can figure out what the rest of my life is going to be like,” Williams says passionately. “He had no idea who I am. MS has no idea who I am either.”

MS is a chronic disease in which the immune system attacks healthy tissue in the central nervous system — causing any number of symptoms including blurred vision, poor coordination, slurred speech, numbness, extreme fatigue, problems with memory and concentration, blindness and more. These problems may be permanent or intermittent.

“Because MS symptoms are as varied and unique as the person diagnosed with the disease,” says Nicholas LaRocca, Ph.D., vice president of health care delivery and policy research at the National Multiple Sclerosis Society, “there is no one-size-fits-all treatment strategy. Everyone needs to develop their own disease-management strategies, in consultation with their health care providers.” To this end, he notes, the MS Society provides a free MS Navigator® program to support those with MS in getting optimal care.

“It’s our responsibility to look for the ways that we can impact MS,” concurs Williams. He encourages those with the disease to take the initiative of researching treatment options available, revealing that his own research led him to an MS clinical trial that has been “life-changing.” Williams also emphasizes the importance of taking medication exactly as it is prescribed; eating whole, nutritious, unprocessed foods; exercising whatever part of the body is able to move; and getting sufficient rest.

As for his own regimen, Williams eats one cooked meal per day and drinks smoothies packed with vegetables and fruits the rest of each day. In addition, he says, “In the last seven years, I probably missed 15 workouts. In the last 13 years, I have missed medications maybe five times. I am paying attention. The more I pay attention, the better I do.” Staying positive, Williams says, and focusing on what one can do instead of what one cannot, is essential to living vibrantly despite MS.

Donna Cardillo, RN, MA, a nurse consultant, author, speaker, and expert blogger at DoctorOz.com, adamantly agrees. “I have seen so many people, and whole families, where MS becomes the sole focus on their life and relationships. It drags them all down,” she says. She recalls picking up the phone to speak with someone with MS, asking a casual, “How are you doing?” to which he barked, “I have MS. How do you think I’m doing?”

“Modern medicine can do only so much for any of us, with any illness we have,” Cardillo continues. “The mind-body-spirit connection is very powerful, not only to give symptom relief and provide healing, but to focus the mindset. And that’s perhaps the most important part of it all, whether you’re the patient or caregiver.”

Cardillo has been her husband’s caregiver for 17 years, since he was first diagnosed with MS. Rather than giving up or giving into the disease, she shares, the couple has made numerous adjustments in their lifestyle, finding a new normal. For starters, they moved from their two-story home to a single-story one, then renovated the house and built in ramps, to make it as easy as possible for Cardillo’s husband to get around. They also found new pastimes to enjoy as a couple — such as watching movies on the weekend in lieu of going out camping. For individual activities, Cardillo’s husband dove into oil painting and cooking, while Cardillo took up meditation and yoga.

According to Rosalind Kalb, Ph.D., vice president of clinical care at the National MS Society and primary author of MS for Dummies, this can-do attitude is spot-on. Each time that MS affects a person’s ability to carry out a chosen activity or role, she says “There is a feeling of loss. Self-esteem and self-confidence can be compromised, accompanied by worry that others will feel let down or resentful.” The best way a caregiver can support a loved one with MS, she advises, is to help the individual adapt, find ways around limitations, and identify tools and strategies to remain active and productive. Among other benefits, she notes, “this kind of support conveys the message that the person is valued and seen as more than her or his MS.”

Williams further encourages caregivers to nudge those with MS outside their comfort zones: “I’ve been wiping your booty for a year; you’re going outside,” he laughs, in a mock conversation between caregiver and care recipient. If a loved one with MS likes ice cream, he says by way of example, use it to entice that individual to go for a wheelchair ride through a park. “Once you’re out of your comfort zone,” he advises those with MS, “you may experience comfort you have never felt. How do you know what it feels like outside your comfort zone if you never go out of it?”

“There may be something brand new to discover, which people never tried before,” Cardillo says of her own experience with her husband. She concludes with a Helen Keller quote: “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.”

New Medicine Is a Comprehensive Road Map to Integrative Medicine

I was raised on a small parcel of land, off of a dirt road, surrounded by almond orchards and livestock. Childhood was a blast for me, with oodles of outdoor activities. Along with said activities, of course, came injury and illness: I broke bones from miscellaneous endeavors, stepped on rusty nails that were littered around the barn, broke out in skin rashes from wild grasses, and had sneezing fits when the almond trees were in bloom. Amazingly, I made it into adulthood with minimal scarring and with all ten fingers and toes intact. That said, I was not what one would call an easy child to care for, and I certainly put my mother through the wringer.

Whenever I would come home with a bee sting or sprained wrist, or come down with the flu or strep throat, Mom automatically would reach for her healthcare bible, the Mayo Clinic Family Health Book. For easy access and quick reference, it resided in the kitchen, right next to Mom’s culinary bible, The Joy of Cooking. The former book corners were well-worn, with the slip cover shredded from years of use. Mom never knew when it would come in handy, but she used it frequently.

When I picked up New Medicine: Complete Family Health Guide, by Drs. David Peters and Kenneth R. Pelletier, I instantly knew it would be my own healthcare bible. New Medicine is a comprehensive road map to all things integrative medicine, and Peters and Pelletier have done an amazing job of simplifying complex ideas and diverse modalities — making them accessible and understandable to the lay reader.

The book is broken into large sections and is color-coded, for quick and easy reference. It begins with an overview of conventional, complementary, and alternative medicine — replete with information about what modality is the ideal treatment for which ailments. From X-rays to surgery to nutrition to yoga, the reader will get to know the basics and contraindications of each option, making it both safer and easier to mix and match for a specific health need.

Next, the book breaks down different body systems and the various imbalances associated within each. Under the section on “skin,” for example, the book explains the conditions of acne, eczema, psoriasis, and more — identifying what the condition is, how it occurs, and what are the most effective treatment options from the conventional , complementary, and alternative medicine camps.

Easy-to-understand and colorful graphics — including diagrams, charts, and photographs — fill the pages of New Medicine, making the book not only super user-friendly, but also downright fun to read. If you are the kind of person who is intimidated by medical books, buy this one. From blood types to micronutrients to tissue fibers, and from environmental health to preventive medicine to mental health, you will walk away with a deeper appreciation of your body and a clearer understanding of how to take charge of your wellness. In addition, because the book is broken into sections and subsections, with each clearly marked, you will be able to pick and choose exactly what you want to read – keeping in mind that each subsection delves more deeply into the select topics.

The icing on the cake is that New Medicine offers tips and references for finding a qualified healthcare practitioner — invaluable information for someone dealing with a health condition. I cannot emphasize how critical it is to be selective when looking for a medical provider, especially when looking for one who will implement the best of Western and Eastern medicine.

Although I have no children running through the back door with an injury or allergy, I do have massage clients asking questions to which I do not have answers. And so, instead of getting worn from use on the kitchen shelf, the book resides on my office desk, right next to my massage table, for easy access and reference. It has been an invaluable resource for my massage practice and my daily life, and I highly recommend it to healthcare providers and consumers alike.

Pediatric Clinical Trials Model Optimization of the Caregiver Role

I recently wrote a series of articles exploring the clinical trial experience from numerous angles. Among other objectives, I was eager to discover how clinical trials could better utilize the caregiver and, as such, optimize the experience for everyone involved. I was unsure about what I was going to find and ended up being pleasantly surprised.

Everyone I interviewed was passionate about their involvement in the clinical trial process — eager to share their insights and help educate others. They were excited about the role clinical trials play in developing cures for numerous diseases, and at the same time, they were realistic about the possible risks involved. Throughout it all, everyone I interviewed supported the idea of involving the caregiver in the clinical trial process — acknowledging that doing so will make trials easier for the patient, medical team, and clinical trial leaders.

It was not, however, until speaking with Robert Goldsby, MD, pediatric oncologist at UCSF, that I understood how pediatric clinical trials most effectively model the optimal use of caregiver involvement. By necessity, pediatric specialists regularly interface with caregivers, because in the case of child patients, the caregivers are the parents or guardians.

“Clinical trials do have risks,” Goldsby explains. “Patients must understand the purpose, aim, risk and potential benefits in determining if [a clinical trial] is the right thing to do in this case. This is critically essential to understand.” Parents not only need to explain these risks to their children, Goldsby notes, but also must consent to their children’s participation. Parents’ role in the consent process, Goldsby emphasizes, is therefore pivotal. For this reason alone, pediatric clinical trials cannot proceed without parent involvement.

In the case of adult patients, chances are that caregivers are not the ones authorizing participation in clinical trials. Even so, caregivers are the ones needing to research and clarify the ramifications of participating in clinical trials, to ensure that their loved ones understand the risks and make informed decisions about participation. In addition, consent issue aside, the parenting and caregiving roles are very much the same: Both parents and caregivers need to drive the patients to medical appointments; help the patients follow clinical trial protocols; observe patient responses to clinical trial medications and procedures; serve as liaison to clinical trial leaders; and otherwise nurture and support the patients throughout the clinical trial process. Maintaining a sense of normalcy is also important, says Goldsby, “making sure things that need to be done, still get done.”

As I have said before, when we become caregivers, we suddenly are responsible for lives other than our own. Given the similarities between the parenting role in particular and the caregiving role in general, it is my opinion that clinical trial leaders will benefit from studying the model of pediatric clinical trials, in the interest of optimizing support of the caregiver, and ultimately, the patient. In pediatric oncology clinical trials, for example, there is a large support staff — including nurse practitioners, registered nurses, social workers, child life experts, and school liaisons:

Social workers assist with everything from navigating the insurance maze to finding a place to stay while participating in a trial.
Child life experts guide children through special programs, like art and music therapy that help cope with the emotions of cancer.
School Liaisons help children continue in school and help school administrators understand what it means for a child to have cancer.
I wish similar resources were available to me, as I supported my mother through her own clinical trial experience. Most importantly, I wish someone had carefully discussed the risks, benefits and protocol with me, as pediatric clinical trial leaders do with parents. Even if caregivers are not the ones giving consent, we are — as the clinical trial leaders I spoke with recognized — the lynchpins of the clinical trial experience. Given this reality, it is my hope that clinical trial administrators begin designing their protocols with the caregiver in mind.