Tuesday, September 30, 2014

Shining the Light on MPNs

We had a great Shining the Light on MPNs (Myeloproliferative Neoplasms) program this past Saturday. We are thankful for: all the participants who came out and took an active role in their (or a loved one’s) treatment, Sara from CSC Headquarters, Dave and Melissa from Incyte, Leila from Leukemia & Lymphoma Society, and to our speakers: Pam Braun (author of the Ultimate Anti-Cancer Cookbook), Ron Anderson (patient advocate and coordinator for the Los Angeles MPN patient group), and Dr. David Snyder from City of Hope.

Mentally Mastering Chemotherapy

Cancer.net Blog
By David Nethero 
August 26, 2014

David Nethero is an author and a colon cancer survivor who used self-reflection, meditation, and the development of positive mental imagery to help manage some of the physical side effects of chemotherapy. He currently promotes the beneficial effects of this approach within the cancer community and seeks to help others by sharing his story.

On December 13, 2012, I was diagnosed with stage IIIB adenocarcinoma of the colon. After reflecting on this news, it dawned on me that nothing had really changed. None of us knows when our last day will come or how we will leave this world. My life expectancy was uncertain before the cancer news and remained just as uncertain after. However, I recognized that this news changed things for those around me. It forced everyone to envision what their lives would be like without me.

As I came to this realization, the impact that my cancer would have on my wife and two daughters became my first priority. Their discomfort and uncertainty became my focus. I realized that I could help them by being an example of living in the moment and treating each chapter of life as though it may be the last. The last chapter is simply a symbol of living fully and being focused on the present.

When I talk about being present to the moment, I mean really hearing what those around us are saying—hearing not just the words, but the intent and the feelings of their words as well. Being present is not a passive event that happens by simply believing in a greater force or spirit. Being present occurs when you still the mind and allow the power of the subconscious to be fully realized. You will know that this is happening when you begin to sort out complex situations quickly. Your conscious mind lets go, and your subconscious mind takes over. You demonstrate those “out of body” moments. In sports, this may be manifested in superb coordination and technique in things like playing tennis or skiing. In business, it may be manifested in keen understanding and analysis of a complex business situation.

I had learned how to use meditation and positive imagery to kick my smoking habit in the past, but was not a daily user of meditation. It was the news that I had cancer and was going to undergo chemo that motivated me to become a daily meditator. The pre-chemo “information sessions” had left me feeling overwhelmed by the long list of side effects. I had a range of emotions as I took the final steps into the chemo treatment room. I was scared, nervous, and maybe even a little excited that the chemo would be helping me get rid of the cancer. From the beginning though, I was determined not to let the mental suggestions of discomfort and pain take over and become my reality. I was committed to using the power of the subconscious mind to mentally master chemotherapy!

Every morning before I got out of bed, I meditated on two mental images, although they were more like a video than a still picture. The first was “perfect health” because I wanted to overcome the negative news of cancer and the fear of chemotherapy. The image that best reflected this perfect state of health was a doctor’s visit several years earlier when my doctor pronounced that I was in excellent condition. I tried to re-live each frame of my experience so that I flooded my mind with the emotions as well as the images.

For my second positive image, I choose that of “perfect fitness” because I had been told the chemotherapy side effects could be so severe that they might be disabling. I’ve always been an active and athletic individual, and the thought of being immobilized by the chemo was frightening. I didn’t want this fear to be dominant or even present in my mind.

The positive mental image I choose occurred on Thanksgiving morning after I completed a half marathon. I had been preparing for this race for nearly a year and ran my personal best. During my meditation I didn’t just recall finishing the race, I also replayed the strength I felt during the race, the challenge of maintaining my rhythm, and the success I had pacing myself with the other slightly faster runners. I immersed my thinking and feeling on every aspect of my performance, including the endurance and focus of my breathing.

One of the unexpected outcomes from my focus on mentally mastering chemo was my body and mind’s response while on a skiing trip with my family. During the second week of my fifth chemo session, we went to Park City, Utah, to a lodge with a base altitude of about six thousand feet. Our skiing would take us to nearly ten thousand feet! I was concerned at those altitudes about shortness of breath and my general level of fatigue, given how rigorous skiing can be. To my surprise, I skied four days in a row and had no shortness of breath and very little leg fatigue. In fact, my general energy level was similar to the level I normally have without chemo.

This is a perfect example of how imagining optimal health and fitness sets up an end game for your mind and body. The subconscious mind, properly programmed with the desired mental imagery, drives the desired outcome. The subconscious mind, properly programmed with the desired mental imagery, drives the desired outcome. Remember the subconscious mind is one million times more powerful than the conscious mind. This means that with the subconscious mind on board, the conscious mind will simply follow—it has no choice.

Read the original blog post from Cancer.net

How To Help Ensure You Die On Your Own Terms

From LA Times
By Lisa Zamosky
September 21, 2014

Earlier this year, Gary Spivack and his sister Betsy Goodkin lost their mother to cancer. Between her first diagnosis and her death in April, her children say, their mother was determined to overcome her illness..

"She was a very stubborn and proud person who fought this and had a lot of support from immediate family and a lot of friends," says Spivack, 49, a music industry executive who lives in Pacific Palisades.

"She was going to live out her final minutes as healthy and fighting it as much as she could," adds Goodkin, 51, who describes herself as a "full-time mom" in the Cheviot Hills neighborhood of Los Angeles.

But even as their mother fought to stay alive and healthy, her children say, she made her end-of-life wishes known: If death was imminent, she wanted no heroic measures taken to save her life. And she insisted on dying at home.

They said their mother passed away April 13 in just the manner she had hoped: She was in her own bedroom with the lights low and the mood peaceful. She held hands with loved ones as she passed.

Dr. Neil Wenger, director of the UCLA Health Ethics Center, said most patients would prefer to die that way, but few actually do. That's because they fail to put their final request in writing, he says.

Without advanced planning, he says, most people die in hospital intensive care units, "in not the most dignified circumstances, in a way most say they don't want to die."

Why the gap between what people say they want at the end of their lives and what actually happens? There are many reasons.

A recent study published in the American Journal of Preventive Medicine found that lack of awareness is the most common reason people cite for not having written instructions prepared in advance.

Denial is at play too.

"People go into a mode of thinking — and are encouraged to — that 'if I just apply enough technology I will survive it,'" says Barbara Coombs Lee, president of Denver group Compassion & Choices. They even continue "in that mode of thinking when it's perfectly obvious they are actively dying."

Doctors also avoid such talks. Some physicians incorrectly believe patients don't want to discuss death. Others pass the buck, believing it's some other doctor's responsibility to have the discussion.

These talks take time and can be emotional. "Doctors are human and they bring to the table a lot of their own emotions about death and dying, and these can be very difficult conversations to have," said Dr. Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai Medical Center.

A report out last week by the Institute of Medicine stated that medical and nursing education fails to orient healthcare providers toward less aggressive forms of end-of-life care, and many providers simply lack the communication skills needed to have these conversations.

Also, the report noted, providers are still largely paid to deliver more services, rather than fewer — even when treatment is futile.

Experts offer recommendations for putting end-of-life plans in place and what needs to be considered.

Open up the lines of communication. Frequent conversations about end-of-life goals between doctors and patients are essential if unwanted treatment is to be avoided, experts say.

"When people fail to plan for the worst, often they find themselves in a struggle to avoid an imminent and inevitable death that ends up causing an enormous amount of suffering for them and for their family members," Coombs Lee says.

"Anyone with a life-threatening disease should know their options and the efficacy rate of any treatment they are offered," she says.

Insist on shared decision-making. End-of-life conversations should be part of shared decision-making between a patient and his or her doctor, Braunstein says.

"You take into account the patient's preferences, their spirituality and a variety of things. At the same time the physician should be giving honest information about what the prognosis is, what we can do and what we can't do," he says.

Talk about comfort care: Conversations should include discussions about your various treatment options, including palliative care, which emphasizes a patient's physical and emotional comfort. Braunstein said palliative care should start well before a patient is terminally ill.

Also important is to talk about hospice care — treatment when you are no longer attempting to prolong your life but rather focusing on staying comfortable and managing pain in your final days.

"We think of hospice care delivered in the home as the gold standard," Coombs Lee says.

Research suggests that people who receive palliative and hospice care may live longer than ill patients who don't.

Select an agent. It's a good idea to name someone such as a family member or close friend to serve as your healthcare agent.

This should be the person you most trust to represent your best interests and who will make sure your wishes are respected and carried out. Your agent can't be your doctor or other healthcare providers treating you.

Establish an advance care directive. These directives for your last days are legal documents. They allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf.

They should spell out what you want to have happen and what you don't. They must be signed by two witnesses — not your doctor or the person you name as your healthcare agent. Alternatively, you can have the document notarized.

A copy should be given to your healthcare agent, other family members or friends, and to your doctor. Ask that it be included as part of your medical record.

Get your doctor's orders in writing. A Physician Orders for Life-Sustaining Treatment is a frequently used document to be signed by both the physician and the patient.

It generally is filled out when a person's anticipated life span is six months or less and is put in a prominent place where caregivers and paramedics can see it. "The document is pink so it stands out, and we tell people to put it on their refrigerator or where they're sitting downstairs," Braunstein says.

Goodkin of Cheviot Hills says she learned a lot from her mother's passing in April, namely about how to die on your own terms.

"Everybody wants to die with dignity, bottom line," she says. "Whatever that means to somebody, you just have to honor that."


Zamosky is the author of "Healthcare, Insurance, and You: The Savvy Consumer's Guide."

Read the original article here.

Friday, September 12, 2014

RECIPE: Stuffed French Toast by Pam Braun

Recipe from Pam Braun, Author of The Ultimate Anti-Cancer Cookbook. Pam will be speaking at our Shining a Light on MPNs: Myeloproliferative Neoplams educational awareness event on Sept 20, 11am-3pm. Visit this website to learn more.

Stuffed French Toast

Impress yourself and your friends by serving this easy, decadent, yet healthy breakfast.  Stuffed French toast is generally loaded with unhealthy fats and calories. This recipe, though, is made with fresh fruit, almond butter, whole grain bread, and toasted walnuts for a warm, gooey morning treat. 

Berries pack a solid antioxidant punch.  The small, yet mighty berry may well protect you from heart disease, cancer, Alzheimer’s, Parkinson’s, macular degeneration, and more. 

Ridiculously easy to make, beautiful on the plate, and healthy yet scrumptious to eat, your guests will definitely be asking for this recipe on their way out your door.

4 pieces whole grain or whole wheat bread
4 tablespoons almond butter
2 bananas, sliced thinly long-ways
4 large strawberries, sliced thinly
½ cup fresh blueberries
2 eggs
1 cup nonfat or soy milk
1 teaspoon cinnamon
½ teaspoon salt
½ teaspoon almond extract
Zest of 1 large orange
Zest of 1 large lemon
¼ cup chopped walnuts, toasted
Dusting of powdered sugar (optional)
Canola oil spray

Spread almond butter evenly over 4 pieces of bread, as this will help hold the French
toast together. Place the sliced bananas evenly on top of almond butter on 2 pieces of
bread. Place sliced strawberries evenly on top of banana slices and blueberries evenly
on top of strawberries.

Make 2 sandwiches by placing the almond butter covered pieces of bread on top of
the fruit layered pieces of bread. Press the sandwiches down lightly so that they hold
together when dipped into the egg mixture. Cut sandwich into quarters diagonally.

In a medium bowl, mix the egg, milk, cinnamon, salt, and almond extract, and whisk
together well. Dip the sandwich quarters into the egg mixture to coat thoroughly.
Preheat a griddle or skillet to medium. When you are ready to place the French toast
on the griddle or skillet, spray the preheated griddle or skillet with canola oil spray.

Place the dipped sandwich quarters onto griddle or skillet and cook for 3 minutes on
each side, flipping the sandwiches until both sides have a golden brown color.
When finished cooking, dust with zests and toasted walnuts. Dust with a very light
dusting of powdered sugar, if desired.

Serves 2-3.

Friday, September 5, 2014

'It's time for circle singing! Join us this Saturday, September 6 at the Cancer Support Community!

Patricia Bahia photo

"... If you can walk you can dance. If you can talk, you can sing ..."

Join us this Saturday, September 6 at the Cancer Support Community for a joyful hour of Saturday Circle Singing! 

Group singing his measurable health benefits. Read this article and then experience it for yourself by joining the circle. We hope to see you there! Bring a friend or just come by yourself. Either way, our circle requires no prior experience or note reading. Just come ready to enjoy the uplift, fun and community of singing with a group!


First Saturday Circle Singing
DATE:  Saturday September 6, 2014;
TIME:  10:45 am - 12:00 noon
COST: FREE! and free validated parking
LOCATIONCancer Support Community - Benjamin Center
1990 South Bundy Drive, Suite 100
Los Angeles, CA 90025

About your Circle Singing instructor and songwriter, Patricia Bahia:

Los Angeles-based singer-songwriter and ovarian cancer survivor Patricia Bahia (pronounced ba-HEE-yah) combines elements of pop, singer-songwriter, with hints of country and soul, to create sparkling gems of piano-based pop songs. She blends catchy melodies with lyrics celebrating life’s struggles and triumphs, and delivers them with a voice as smooth as a polished stone that has been through the rock tumbler of life. Drawing favorable comparisons with Ingrid Michaelson, Aimee Mann, and Sara Bareilles, Patricia creates music that is uniquely soothing, refreshing, memorable, with a sound that is all her own.

A former jazz and gospel singer, Patricia started her career as a soloist with the acclaimed Oakland Interfaith Gospel Choir--recording with Linda Ronstadt, performing with Joan Baez, and opening for Bonnie Raitt. Patricia discovered her “bucket list” desire to write songs during a successful battle with ovarian cancer ten years ago. She credits her illness with the discovery of her songwriting voice, and the power of music with her recovery. Now healed, Patricia is on a mission to spread love, healing, joy and peace through the power of words and music--and to inspire others to follow their dreams and live artistically.

Patricia’s music is available at: iTunes, CD Baby and Amazon.com

Learn more at:www.patriciabahia.com

Note: We need some photos of the circle in action that the CSC can use on fliers and website to let folks know about Circle Singing. We hope to have someone there on Saturday to take a few pictures. If you would like to be in the pictures, you will be asked to sign a photo release. If you don't want to be in the picture, please join us anyway. You will still be able to participate in the circle without being photographed.


The mission of the Cancer Support Community is to ensure that all people impacted by cancer (including survivors, family and friends, and caregivers) are empowered by knowledge, strengthened by action, and sustained by community.  All programs and services are provided free of charge. Learn more on our website, or stop by the center for a free course. We look forward to meeting you.

Wednesday, September 3, 2014

Cancer patients with depression 'are being overlooked'

August 27, 2014
By Smitha Mundasad

Three-quarters of cancer patients who are clinically depressed do not get the psychological therapy they need, according to research in the Lancet.

This "huge unmet need" is partly due to a focus on physical symptoms at the expense of good mental healthcare, researchers say.

They argue depression is often overlooked but could be treated at a fraction of the cost of cancer drugs.

Charities say the current situation is "heartbreaking".

Continue reading the main story “Start QuoteIt is heartbreaking to think cancer patients who are already dealing with the toughest fight of their lives are also struggling with depression, without adequate support”
End Quote Jacqui Graves Macmillan Cancer Support
'Persistent sadness'

People often wrongly assume that major depression is part of a natural reaction to cancer - but this is much more than transient sadness, the Edinburgh and Oxford university researchers say.

Their report suggests a new nurse-led treatment could help thousands of people.

In a series of studies they analysed data on 21,000 cancer patients living in Scotland.

They found 6% to 13% of people had clinical depression, compared with just 2% of the general population at any time.

Jump media playerMedia player helpOut of media player. Press enter to return or tab to continue.Cancer survivor Sonia Wilson said cancer made her feel "like a burden to society"

Sufferers of major depression feel persistently low, may find it difficult to sleep and have poor appetites.

But researchers found 75% of people reporting these symptoms were not receiving treatment, partly because they did not consider seeking help and professionals did not pick up on their illness.

The reports also show that, even when given a diagnosis and standard NHS treatment, the majority did not feel better.

Scientists say a new nurse-led approach designed specifically for patients with cancer can substantially reduce depressive symptoms.

In their study of about 500 patients, the therapy halved the depression scores of more than 60%.

Patients reported they were less anxious, less fatigued and experienced less pain.

Only 17% of those who had standard NHS care had similar results.

picture of man with head in hands Some 13% of people with lung cancer reported symptoms suggestive of major depression
'Profound impact'

In contrast the new intensive, tailored approach is delivered by a trained cancer nurse and involves the wider medical team.

It includes:

antidepressant drugs
encouraging patients to become as active as they can be
problem-solving therapy
Researchers argue that if their programme were rolled out widely it could improve the quality of life for thousands of people.

Their final paper suggests the therapy improves quality of life, regardless of how good a patient's prognosis is.

Dr Stefan Symeonides, of the University of Edinburgh, said: "Day-to-day oncologists like myself see the profound impact depression can have on a patient with cancer."

He added: " [This is] a huge area of unmet need missed by current practice."

Researchers say the therapy costs around £600 per patient.

Jacqui Graves, of the Macmillan Cancer Support charity, said: "It is heart-breaking to think cancer patients who are already dealing with the toughest fight of their lives are also struggling with depression, without adequate support.

"Anyone experiencing depression should get in touch with their GP."

View the original source article here: http://www.bbc.com/news/health-28954661

Tuesday, September 2, 2014


By Victoria Moore
   The other day I was asked by someone in an online discussion, "Which one word do you want people to think of when they think of you?" Without a second thought I said, "Stylish." If you'd have asked me that same question four years ago when I was diagnosed with Stage II A Breast Cancer, I might've said ,"Tough," but now that I'm in my post-cancer treatment phase I feel my journey has been personified by my appearance. Regardless of my financial circumstances, physical state or lifestyle changes I've discovered how to project self-assurance, mastery, courage and substance through the way I've dressed on my journey. Looking back I realize that was one of the ways I maintained my dignity while living with the disease.
   According to writer and breast cancer survivor Madhulika Sikka in her book "A Breast Cancer Alphabet," "Going through something like cancer treatments is hard, and it shows. If it works for you, to don a mask, great, because you and no one but you gets to decide how you look." During my current phase I've been subjected to criticism by people, who've never walked in my shoes, for "dressing" and it's led to unnecessary conflicts and misunderstandings that've added to the stress and anxiety I already feel as I try to rejoin the real world. A few months ago I read an article about an African woman who made peace with herself and her stylish upbringing by embracing it as a professional woman now living in the United States. Before she decided to dress beautifully, she'd downplayed that side of her personality so that she'd be taken seriously in the workplace. The thing I really related to, in the article, was how she came to the realization that being chic was a significant part of who she was and she was cheating herself by submerging it.
    As I struggled with cancer I was confronted by my own inner struggle over whether or not to hang onto this aspect of my life forever. Despite what my naysayers have said I've decided to keep it and enjoy it to the hilt. For women with breast cancer getting dressed and looking stylish can be a daunting challenge since they not only have to deal with the results from a mastectomy, scarring, side effects from chemo, procedures and medication they might also have to deal with isolation, depression and budgetary restrictions.

Ivey Abitz:
   After I had my first chemo treatment my immune system became so compromised that I couldn't go out in public and shop when I needed to. I did have internet access, however, and through my account on Face book I discovered a wonderful clothing company called "Ivey Abitz." Created by Cynthia Ivey Abitz and her husband Joshua Ivey Abitz their philosophy is "to give a nod to the past and present." Vintage-inspired and classic, their women's collections are timeless, versatile, unique and exquisite. For Summer 2014, even though I thought everything was beautiful, the one look that caught my eye was featured in their May 31, 2014 blog "Cottage Design Collection." Described as "having abundant ease and comfort," I felt Look No. 26, a beige cardigan over a white camisole and beige frock was the perfect outfit for someone going through the breast cancer journey because everything can be layered for warmth in case the examination room or the chemo suite is chilly, and the pieces can be easily removed for procedures. Dressy enough to be worn to a job, with a semi-casual atmosphere, it can also be worn to a support group or a local art gallery opening.

Angela Sum:
   While the internet is an excellent place to look for clothing choices, when you can't physically go to the stores, T.V. is another. When I was quarantined at home and in the hospital, I also kept up with fashion by looking at "America's Next Top Model" and "Project Runway." This season, I was immediately struck by how L.A. fashion designer Angela Sum, presented her "practical clothes" to the judges. What set her apart from the other contestants for me was the calm way she talked about "how she wasn't trying to reinvent the wheel but instead wanted to add subtle changes to classics that brought out a woman's femininity but also made her look like an individual."
   Considering the obstacles I've had with dressing in separates that would camouflage my surgical scars, and be versatile enough to accessorize easily, I felt the white "alternative dress shirt" and grey skinny pants Sum wore on one of the episodes would be the perfect solution to this problem. Roomy and loose enough to wear over a white t-shirt or tank top for extra warmth if I got chilly on a doctor's visit, the dress shirt is also elegant enough to wear to work then on a dinner date afterwards.

Looking to the Past for Inspiration:
    Before I was diagnosed with lupus in 2008, then lost all of my hair to chemo, I'd worn sunglasses and hats every now and then, but when I was forced to deal with these obstacles full time I had to find a way to incorporate them into my look. Physically, I have a tall, slender frame, long neck and small head so I was drawn to cloche hats and knit berets then. I've always been a huge fan of the 1920's so I adopted this style and still wore it once my hair grew back because it was very becoming.
   To keep up with different versions of the trend I look at books like Betty Kreisel Shubert's "Out-of-Style A Modern Perspective Of How, Why and When Vintage Fashions Evolved." Through her illustration in the section "The Changing Shapes of Women's Millinery 1906-1920's" I learned how to alter this look and make it more girly by accenting a hat with a flower pin.
   During those times when I couldn't replenish my wardrobe, through shopping, I often relied on older things I've owned for years to coordinate. When I read Shubert's quote, "Clothes that earn the title "Classic" or "Vintage" are beautiful in their own right," I felt justified for hanging onto them and wearing them when I needed and wanted to.
    Wherever you choose to seek inspiration, and however you try to stay within the fashion loop during your journey with breast cancer, don't forget to see it as part of your recovery and a way to add structure to your life as you travel on this new and interesting path.

1) Ivey Abitz (www.iveyabitz.com)
2) Angela Sum (www.angelasum.com)
3) "Out-of-Style A Modern Perspective Of How, Why and When Vintage Fashions Evolved," written and illustrated by Betty Kreisel Shubert (www.outofstylethebook.com, bettyshubert@cox.net). This book is a great read and is a good way to escape and learn more about fashion from an insider.