Thursday, November 13, 2014

Find support when parenting through cancer


Living with cancer blog

Find support when parenting through cancer

By Sheryl M. Ness, R.N. November 8, 2014
This week, I'd like to introduce you to our American Cancer Society Navigators, Jeri Lensing and Angela Young at Mayo Clinic Cancer Center in Rochester, Minnesota, and Cathy Mikkelson at Mayo Clinic Cancer Center in Phoenix.
The Navigators work with patients and family members daily and have incredible information, support and resources to share. They put together these tips to help you when parenting through cancer.
As a parent, you may wonder how to best talk with your children about a diagnosis of cancer. Children can usually sense when something is wrong, even at a young age, so it's best to be honest with them. Here are a few tips:
  • Prepare — Have an idea of what you need to say. Ask your partner, friend or other family members to be with you for support.
  • Set the tone — How you say it is as important as what you say. Use a calm and reassuring voice. It's OK to show emotion and sadness because it lets your child know that you're also trying your best to cope. They may get upset or walk away, but reassure them that you're there for them when they would like to talk about it more.
  • Be age appropriate — Use words that your child will understand. You may need to have separate conversations when talking with younger vs. older children. Older children may want more details that would be difficult for younger children to understand.
  • Share details about treatment — It's important to let them know how your treatment may or may not change their daily routine. Explain that you might have side effects during treatment and help them understand why. For example, you may want to explain how chemotherapy can kill normal fast growing cells like hair and that's why you might lose your hair. The most important point is to reassure them that they'll have love and care no matter what happens during treatment.
  • Encourage them to express their feelings and ask questions — They may choose to talk to you, their friends, teachers, other family members as well. Keep the lines of communication open so they know that you're open to any questions that they have. Keep your usual routine times together if possible, such as reading before bedtime.
It's important to explain your situation to your children's teachers as well, so that they may understand any behavior changes and assist in communication. Learning that a parent has cancer is an emotional time for children. Each child will deal with the news in a different way. Don't be afraid to ask for help if you need it.
For more information about how to connect with an American Cancer Society Navigator in your area, call 800-227-2345 or visit the ACS website (cancer.org). Additional resources you may find helpful include CancerCare (cancercare.org; 800-813-4673) or KidsKonnected (kidskonnected.org; 800-899-2866).
I'd love to hear what worked best for you when talking with your children. Please share your ideas and resources with each other on the blog.

Wednesday, October 29, 2014

Feed your body, not the disease

Local experts share how food can help fight cancer, before and after diagnosis

By Tiffany Esshaki
C & G Staff Writer

» click to enlarge «
Henry Ford West Bloomfield Hospital will host a class on nutrition and cooking for breast cancer at 6 p.m. Oct. 23 in the hospital’s demonstration kitchen. Visit www.henryfordwestbloomfield.com to register.
Kale salads, like this one created by culinary staff at Henry Ford West Bloomfield Hospital, are high in cancer-fighting compounds and low in carbohydrates.
 
METRO DETROIT — Dr. Cynthia Browne, a radiation oncologist at the Van Elslander Cancer Center at St. John Providence Hospital in Grosse Pointe Woods, doesn’t always refer to meals as food. Instead, she might call them nutritional medicine.
That’s because what we eat, in her opinion, can be one of the most powerful treatments available to fight or prevent cancer. But patients and even some doctors can sometimes disregard the importance of eating a diet loaded with the good stuff our bodies need to fight disease.
“Most doctors know nothing about nutrition because it’s not part of our training and we don’t see much of it in our literature,” said Browne. “But food matters. You are what you eat.”
Browne said that when she sees a patient diagnosed with cancer who wants to be especially proactive in their treatment plan, she’s happy to share some tips on what foods help heal cells while fighting cancer and which foods could actually be helping tumors to grow.
“First, we need to prioritize. If you’re not getting air, I don’t care what you’re eating. If you’re dehydrated, I don’t care what you’re eating; you need to be drinking water. And if you’re not eating at all, I don’t care what you’re eating; I need to get calories into you any way I can so you have the energy to undergo treatment. But if all that is in order, then we can talk about protein and fat and micronutrients.”
The sugar situation
According to Browne, protein, fat and micronutrients are important parts of a cancer patient’s diet for a very specific reason: They prevent blood sugar from spiking. The more carbohydrates and sweets we eat on an empty stomach without protein or healthy fat, the more likely it is that the sugar in our blood will increase and give cancer cells fuel they need to thrive.
“Cancer feeds on glucose. That’s why diabetics who have high blood sugar have more cancer and worse cancers. It’s thought it’s because of the sugar in the blood, though it hadn’t been proven,” she said.
Because of that, Browne advises her patients to stay away from the popular health trend of juicing, since most times we tend to juice only the fruits and veggies that taste good instead of what’s truly good for us.
“Most people do fruit juice because it tastes good and it’s sweet, but nothing will raise blood sugar faster than juice. Even carrot juice and beets will do the same thing, because they’re also very sweet,” she said. “If all someone is juicing is spinach, watercress and parsley, that’s great. But that’s not what they’re doing.”
In lieu of those carbs, Browne recommends patients swap in quinoa and protein like fish and poultry, as well as high-fiber carbs like apples and raw carrots. All of those will prevent blood sugar spikes and also keep inflammation low, which she said is another factor that could hinder the success of cancer treatment.
“Inflammation drives cancer growth, diabetes, heart disease, arthritis — most of the disease we see in Western man,” she said. “We have an epidemic of people with heartburn, and that’s inflammation. Fairly simple changes in diet can make a huge difference in how people are going to feel.”
Nutrients come in real foods
Halle Saperstein couldn’t agree more. She’s a registered dietitian at Henry Ford West Bloomfield Hospital and spends a great deal of time advising patients not only on how they can best nourish their bodies during cancer treatment, but also how the foods they eat throughout their lives can help mitigate disease in the first place.
“There are so many foods that have anticancer benefits, like blueberries and quinoa and salmon. But we’re learning that it’s not those goods by themselves that (are healthy), but as part of a dietary pattern, which means consistence and combination,” said Saperstein.
Just like she tells kids, she advises adults healthy or not to eat a rainbow, or a diet packed with fruits and vegetables of all different colors — the brighter the colors, the more antioxidants.
As far as those fruits and veggies go, Saperstein said you should be getting five servings a day, though Browne said those battling cancer should be getting closer to nine or 10. Keep saturated fats to a minimum, Saperstein added, but don’t discount the benefits of healthy fats like those found in avocados and fish.
“Eating five fruits and vegetables a day has shown to reduce the risk of breast cancer by 22 percent in post-menopausal women,” she said.
It wouldn’t hurt to cut back on the red meat, as well, Browne said, to reduce inflammation. Saperstein agreed, saying that going vegetarian even one day a week can substantially reduce the amount of saturated fat in your diet.
Give a little, take a little
Breast cancer patients might also want to reduce the amount of alcohol and soy in their diets. Saperstein said patients with the BRCA 1 or BRCA 2 gene are thought to have an increased risk of breast cancer, and alcohol and soy can both be seen as estrogen in the blood, which fuels cancer cells.
“People with those genes maybe don’t need to stop drinking completely, but just be mindful of it,” she said.
Just like estrogen, which Browne described as a “cheerleader for cancer,” both experts warned of the dangers of incorporating too much plastic in food. While most people aren’t likely knowingly consuming plastic, it could be discretely seeping into our stomachs anyway.
“Don’t microwave in plastic containers or Tupperware, don’t store food in plastic, and don’t drink from plastic water bottles because when that plastic heats up, it gets into your water and food, and we often don’t realize what we’re doing with the intake of plastic,” said Browne.
Saperstein also said to try to buy food from the perimeter of the grocery store, especially when it comes to fruits and vegetables sold in cans. While many manufacturers are starting to sell food in containers free of Bisphenol A, or BPA, plastic, it’s best to play it safe and avoid having those compounds in your meals.
Avoid charring meat on the grill for the same reason, Saperstein added, saying that animal muscle can become toxic when it becomes crispy on the grill and could lead to consumption of cancer-causing chemicals.
Small steps toward a big goal
With so many things to avoid, it can become pretty daunting to feed your family an anti-cancer diet. Browne advises people to make changes where they can, and adapt an overall healthy lifestyle.
For Saperstein, that includes getting enough vitamin D, even if it comes in supplement form, and getting plenty of exercise. Both of those have been shown in lab studies to reduce the risk of breast cancer, among other healthful benefits.
“About 30-60 minutes of moderate to vigorous exercise a day was shown in a study to reduce the risk of cancer by 10-15 percent,” she said.
You can reach C & G Staff Writer Tiffany Esshaki at tesshaki@candgnews.com or at (586)498-1095. 

Tuesday, October 28, 2014

Faces of Breast Cancer: Find Your Story, Join the Conversation

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Credit
“Without the experience of cancer, I might not have taken the time to be an ice climber, risked being a sculptor or upended my life to move closer to my granddaughter,” writes Amy, of Baltimore, one of hundreds of women and men around the world who tell their stories on the Faces of Breast Cancer project — The New York Times’s newly redesigned and enhanced interactive feature for those whose lives have been touched by the disease.
Readers can now search a database of breast cancer stories to find people like themselves — men and women with similar diagnoses, challenges or family situations — and learn from their experiences. Readers can also submit their own stories sharing photos, memories, setbacks and victories from their breast cancer journey. And now everyone can join the conversation on subjects like body image, family, career — the whole host of things that change after a cancer diagnosis.
Faces of Breast Cancer aims to bring together the community of people behind the statistics, people who have learned, lost and loved after a life-changing diagnosis. We invite you to browse the stories, find someone like yourself, join the conversation and submit your own story.
http://well.blogs.nytimes.com/2014/10/28/faces-of-breast-cancer-find-your-story-join-the-conversation/?_php=true&_type=blogs&emc=edit_tnt_20141028&nlid=52389906&tntemail0=y&_r=0

Monday, October 13, 2014

THE SILVER LINING COMPANION GUIDE


TSL_CompanionGuide_CoverAllstate Logo
The Silver Lining Companion Guide: A Supportive and Insightful Guide to Breast Cancer is available free, thanks to the generosity of Allstate.
The Silver Lining Companion Guide is a practical and supportive resource to help everyone impacted by a breast cancer diagnosis. Author Hollye Jacobs, a nurse and breast cancer survivor, offers practical, realistic and hopeful advice that helped her from the time of her diagnosis throughout treatments and into recovery. This valuable resource is now available FREE of charge to help you and your loved ones through the experience
Silver Linings are the heartbeat of The Companion Guide. They gave Hollye the perspective, balance and hope to cope with the most difficult circumstances. Hollye’s Silver Lining is that she now uses her experience to help others on this difficult path. She is the experienced girlfriend who sheds light in the darkness and holds your hand along the way.
Hollye’s words are balanced with inspiring photographs by her friend, co-author and award-winning photographer, Elizabeth Messina. Her images reveal the honesty, beauty and light found within the darkness of breast cancer. They are also informative visual aids for everyone impacted by the disease.
The Silver Lining Companion Guide is available in electronic and print formats. Starting in mid-October, the printed version will be offered through select Direct Relief partners. Click here for a list of participating community health centers and clinics.
The electronic version is offered in English and can be downloaded from the panel on the right hand side of this page. A Spanish Version will be available soon.
Thank you, Allstate, for making this important and helpful book available for free.
About the Authors
Hollye Jacobs, RN, MS, MSW is a speaker, writer, nurse and breast cancer survivor. After being diagnosed with breast cancer in 2010, the 39-year-old mother created The Silver Pen blog. The award-winning blog captured her thoughts and feelings about her diagnosis, as well as documented her experiences through a double mastectomy, chemotherapy, radiation and recovery. The Silver Pen reached audiences far beyond Hollye’s circle of friends and family and became the foundation for her New York Times bestseller, “The Silver Lining.” Hollye lives in Santa Barbara, Calif. with her family. You can read her award-winning blog, laugh and be inspired at TheSilverPen.com
Elizabeth Messina is an award-winning photographer whose artistic images captivate hearts around the world. Her soulful images grace the covers of countless magazines and books. To see more of her photographs, visitElizabethMessina.com. Elizabeth lives in Santa Barbara with her family.


Hospital Cancer Program Confronts The Existential

Hospital Cancer Program Confronts The Existential

Posted: Updated: 

People who battle stage 4 cancer are familiar with words like chemotherapy, radiation and metastasize. But words they may not hear at a hospital as often are existentialism, mindfulness, legacy and humor.
Dr. Arash Asher at Cedars-Sinai Medical Center in Los Angeles is dedicating his life to changing that.
asher
Asher, 38, is a physiatrist -- a rehab doctor. Before his new program, Asher focused his training on the physical aspects of cancer treatment -- things like cogitative rehab, and the management of pain and nausea. But a good number of patients kept coming back to him to talk about their deep and persistent fears. “We can treat someone’s physical pain, but I just felt like we weren’t doing enough as a system," Asher says. "An antidepressant will not solve the issue.”
So Asher decided to create a rehabilitation program that focuses on the emotional fallout of cancer treatment. He recruited patients for the first course that began in mid-July and is currently in the fourth cycle of the program, called Growing Resiliency and Courage with Cancer, or GRACE.
Two hours a week, for five weeks, seven to nine patients meet in a conference room at Cedars-Sinai with Asher and Jeffrey Wertheimer, a neuropsychologist who co-developed the program. The group focuses discussions on themes or lessons -- like wisdom, gratitude, humor, courage and legacy-creation. Patients are assigned homework reading, learn meditation techniques and conclude class with a piece on mindfulness.
The emphasis on mindfulness has a basis in research: it lowers the stress hormonecortisol and helps the brain control pain and emotions. That makes mindfulness a perfect tool for sick patients. Gratitude, a hallmark pillar of any mindfulness practice, has even been said to make us feel happier. Much of the GRACE programming is experimental, based on Asher's instinct and clinical experience.
A book Asher read at age 17, by Austrian neurologist and psychiatrist Viktor Frankl, who also was a Holocaust survivor, has been a guiding inspiration for the Cedars-Sinai program.
frankl
Asher holds up an old copy of the book he’s kept since he was a teenager, the pages dog-eared and the edges frayed. “Frankl noticed that the people who survived the Holocaust weren’t necessarily the strongest or the most physical. They had this capacity to say, ‘I’m going to endure this pain and endure this humiliation because I have to write my book or I have to tell my story or I have to go back to my art.’”
Asher says his greatest lesson from Frankl’s memoir was this: “Nobody can take away the last of the human freedoms -- which is one’s ability to choose his or her attitude in any given set of circumstances.”
This is the premise of Asher’s work -- helping people cope with the inevitable and often painful conclusion of their lives. There are certain things you can’t treat with medications, Asher explains bluntly.
“When people come to you with fear -- and these aren’t psychologically abnormal fears -- these are people with stage 4 cancer and they are facing their own mortality, there’s a deep sense of loss of control,” Asher says. "Because you have no control over what your next CT scan will show or your next tumor marker.”
cedars
Instead of relying solely on anxiety medications, Asher uses tools like meditation and mindfulness, looking at how to find gratitude as a way to regain perspective.
"We’re never trying to be Pollyannaish, like, ‘Thank goodness for cancer because now you’re not materialistic.’ Or, ‘Thank goodness for cancer because now you know who your friends are,’” Asher says. “That’s just crap. But to say, ‘Okay, cancer is here. We are making the best of our circumstances. Are there things that we could gain that you were not really focusing on before?’”
So far, 22 patients have participated in the program. By early November, the total will be 31. Asher is keeping the groups small so that everyone gets attention and all voices are heard.
“We are used to prescribing meds and ordering tests and having control. But human nature is unpredictable and these are perceivably cheesy, non-scientific topics that we are covering,” he says.
For that very reason, Asher wasn’t always so convinced the program would be a hit. It took him nearly five years just to present the idea to colleagues.
“These are people with advanced-stage illnesses and my worst fear was wasting someone’s time when they don’t have a lot of time,” he says.
matthew morgan
Matthew Morgan, 51, recently completed the GRACE program with Asher. After being diagnosed with head and neck cancer at the end of 2012, Morgan, a former television producer for shows like “Saved By The Bell” and “California Dreams,” had surgery to remove a portion of his tongue where a tumor was found. Despite a successful surgery, the cancer metastasized to his lungs, which made him a stage 4 cancer patient.
“Cancer is such a big umbrella. It covers a lot of different illnesses, different symptoms, different treatments, different prognoses,” Morgan explained in a quiet corner of the expansive waiting room at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai. “But there’s [always] something existential about it that is frightening.”
Morgan has a little trouble speaking, but manages well considering his surgery, which involved partial reconstruction of his tongue. “Over time, you learn how to work with what you have,” he says. “I had no idea that the surgery was going to be as dramatic as it was.”
Morgan has been through surgery, radiation and chemotherapy, facing the unknown at every stage. As he spoke to HuffPost, he awaited new scans that would help show his prognosis. “I think it’s helpful to do more than just sit at home and scratch your head about it,” he says.
cedarssinai
Morgan was an eager recruit when he first heard of the GRACE program in its nascent stage from Asher. He claims to have had no expectations, but was excited to participate.
GRACE is not a just a support group. It's more than a venue for patients to share experiences with cancer. In fact, Asher asked GRACE patients if they would have participated if he had billed it as a support group. Almost no one said yes. “Most of these patients are tired of being in a situation where everyone is just kind of bitching,” he says.
The group discusses assigned poems and essays, watches “Seinfeld” clips to facilitate a conversation about humor, and learns meditation methods. With a lesson plan and structured discussion, the program is more college course than group therapy.
One of Asher’s favorite lessons is on legacy creation. He observes that people often have the idea that a legacy is something tangible to be handed down to children.
“But we really reframe it as, ‘What do you want to be known for?’ ‘What is your identity?’ Because if you know where you want to go, you can live your life now working towards those goals,” Asher says.
The GRACE program also is shorter than a support group -- just five weeks. For some participants, that's about all the time they have left.
“Several people who have done the class have already passed," Asher says. "I think it gave them something to focus on and think about. It gave them a sense of control.”
Morgan says he identified most deeply with the concept that he can choose his response to his situation. “This can be a very powerful tool for dealing with something like cancer," he says. "The notion that you’re not responsible for it, but you’reresponse-able to deal with it.”
The sense of ownership has larger implications for the larger conversation about cancer. When asked what he feels is missing from the national dialogue about cancer, Asher doesn’t hesitate. “The idea that it’s possible to heal even if you can’t be cured,” he says.
cedars
That feeling was echoed in a recent email from one of Asher's patients who had reached the end of his treatment options. Asher was eager to share the note, albeit anonymously. It read:
As someone expressed at our last class ‘we are as one.’ However anyone else responded to treatment, I responded differently. To hear ‘me too,’ from everyone in the group was unbelievably bonding.
“So much of the focus tends to be on the cure. And our patients identify themselves with that: cured or not cured,” Asher says.
He recalls his original inspiration in Frankl, who was able to keep his full identity in mind, despite his circumstances in the concentration camp. This ability, Asher believes, allowed Frankl to persevere, cope -- and find solace in others.
“For the first time in many years,” the dying patient concluded his email. “I did not feel alone.”

Saturday, October 11, 2014

Living with Cancer: Hiding Under a Wig?

Photo
CreditDan Kitwood/Getty Images
Living With Cancer
LIVING WITH CANCER
Susan Gubar writes about life with ovarian cancer.
http://well.blogs.nytimes.com/2014/10/09/living-with-cancer-hiding-under-a-wig/?_php=true&_type=blogs&emc=edit_tnt_20141011&nlid=52389906&tntemail0=y&_r=0

My wig (I named her Sally) was looking worse for wear. I decided to use a trip to visit my grandchildren in Manhattan as an opportunity to get another so-called “cranial prosthesis.” That way I could give Sally a much needed shampoo.
I picked up the phone and made the appointment. Afterward, a strange thing happened. I felt the spirit of the poet-activist Audre Lorde descend on my shoulder. (Are such visitations the reason parents discourage their children from becoming English majors?) In her book, “The Cancer Journals,” Ms. Lorde was voluble in her attack on prostheses, inveighing especially against bra inserts and breast reconstruction. Her objections to cancer patients engaging in any and all forms of camouflaging went well beyond the fact that in her historical moment surgical implants could be dangerous.
Glaring at Sally, Ms. Lorde hissed in my right ear, “Power vs. Prosthesis,” which also happened to be the name of one of her book chapters. By denying the mutilations of cancer treatments, she argued, we become complicit in a culture that refuses to acknowledge its manufacturing and marketing of carcinogenic products. Women, she cautioned, ought not to conform to some ridiculous definition of what constitutes attractive femininity. Like the honorable wounds of war, scars and lopsidedness, a flat chest and hair loss bear witness to the disfigurement resulting from the battle against disease.
If we remain invisible, Ms. Lorde insisted, the population at large will never understand how many people are being destroyed by an epidemic that has taken untold lives and continues to do so decades after her death. We should be directing our energies into working for cancer prevention and cure, not into pretending we are unharmed.
I mulled Ms. Lorde’s heroic message. But what was this odd presence alighting on my other shoulder? An ungainly specter holding a mask murmured in my left ear the words of Voltaire, “Illusion is the first of all pleasures.”
Since cancer patients are robbed of physical stamina and libido as well as a sense of security and of a normal body, why not at least create an illusion of well-being?
And then I imagined the spirit of the playwright Oscar Wilde, patting Sally on the head and confiding why he loved acting. “It is so much more real than life,” he said.
Could it be that a prosthesis is not a lie but a costume that allows us to pass as healthy people? Or perhaps it allows us to experiment with a series of personae that short circuit the pathos produced by thinking of oneself as a victim. When a misshapen, aberrant, or downright ugly body emerges from treatment — if only in one’s own mind’s eye (and what other eyes count?) — there is no need to be tethered to it. What else is artistry for?
Brushing off these spectral voices was not easy as I made my way to New York and then to Bitz-n-Pieces, a salon I had read about in cancer memoirs. The waiting room — all chrome and white — featured a wall of photographs, each inscribed to its founder, Barry Hendrickson. They were a gorgeous crew: Katie Couric, Robin Roberts, Carly Simon, Raquel Welch, Susan Sarandon, Marilyn Horne, Mary Wilson.
An emaciated woman paying the cashier glanced at me and then came over to where I was sitting. “Is this your first time?” she asked. When I nodded, she said, “On my first visit, I loved seeing these glamorous people. Next year, you and I will be up there.” I sort of doubted that, but relished the camaraderie.
Moments later I was ushered into a private booth where a youthful man named Edward asked me what wig style I thought would look best. “An urbane relative of Sally’s,” I thought. He went off and brought back three wigs, and I picked the one that resembled a city mouse to Sally’s country mouse.
I asked Edward if my new wig had a name. “Her name is Tori,” he replied, “But we call her Torian Gray.” English majors rule!
At the end of “The Cancer Journals,” Audre Lorde corrected an earlier declaration that she would “give anything not to have cancer.” She knew that she would not give up her life, her partner, her poetry or her arms. I agree: I would not give up my vision or hearing; I would not give up the health of my children and grandchildren.
Like Audre Lorde, I do not want to deny the mutilations of cancer. And I do want to protest the lack of prevention and cures. So why in the world would I continue to walk around with a synthetic helmet on my head?
Perhaps it’s because I refuse to relinquish my various identities prior to and unrelated to the onset of disease. I do not want to be instantaneously pigeon-holed as a cancer patient in every social situation I encounter. My wigs, Sally and Torian Gray, give me that freedom.
Though I have cancer, it does not have all of me … yet.