The Northwest Sarcoma Foundation provides hope, education, and support to sarcoma patients and their families in the Pacific Northwest while investing in research to improve cure rates for sarcomas.
Its CARE values are
Compassion — Providing comfort through a sympathetic awareness.
Advocacy — Promoting accurate diagnosis, research, and treatment options through investment in research
Responsibility — Providing timely, accurate information and reliable resources.
Education — Providing educational materials for patients and families about this disease.
Its vision is better treatments for sarcoma patients and increased cure rates.
Category Archives: Complementary Therapies
Mesothelioma Website Gives Virgil a Chance to Survive
Note: Virgil Anderson is alive today and receiving life-saving treatment because he found an organization that provided him with the information and support he needed. As we all share what we learn from our journeys with cancer, whether ours or another’s, we can give each other more options and genuine hope. Thank you, Virgil, for sharing this with us.
Virgil writes:
My story of illness and cancer is similar to the struggles of others: I was diagnosed at 50 with the devastating type of cancer called mesothelioma. I am now very sick and fighting for treatment and for my life. I am limited and unable to enjoy the activities I once did. Just breathing is difficult for me now, and I can blame all this on exposure to asbestos.
My message is an important one, and I want to educate people about the risks of exposure to asbestos. I want other people to know that prevention is important with mesothelioma and that early detection and diagnosis are crucial for effective treatment. Avoid asbestos, but if you have been exposed, get diagnosed and treated as soon as possible.
I grew up in the small town of Williamson, W.Va., and my story with asbestos began in high school. I worked in demolition, taking down buildings with tools and with my own hands. It was hard work and I was exposed to asbestos-laden dust. Disrupting asbestos in older buildings is one of the top ways people are exposed to asbestos fibers.
After that job I moved on to others, including working on cars. I tore out and replaced hood liners and made repairs to cars, including working with clutches and brakes. All of these parts contained asbestos. Without knowing the dangers or how to protect myself, I was again exposed to asbestos fibers.
Asbestos was once used extensively in so many applications, especially in the construction of buildings. The real dangers of inhaling or accidentally consuming this mineral were not known until the 1970s when regulations were finally put into place. Because I never knew the risks, I worked for years around asbestos and now I have mesothelioma.
I am now living with the consequences, as are many other older Americans. Mesothelioma sneaks up on you many years after asbestos exposure. I now have a hard time breathing and even walking. I spend much of my time in bed, unable to do normal daily tasks. My symptoms include chest pain, a terrible cough, and shortness of breath.
Treatment is limited for me. Treatment for mesothelioma is already difficult, but my cancer has spread to the lymph nodes so surgery is not an option. I am hoping to undergo chemotherapy, which may shrink the tumors and bring me some relief, but a cure for this disease just isn’t possible.
I hope that by sharing my story as far and as wide as I can that I will reach people who may still be able to take steps to prevent mesothelioma or to get screened and treated early. If there is any chance you think you may have been exposed to asbestos, do not wait to talk to your doctor about it. Monitor yourself for symptoms and get screening tests to catch this terrible disease early. My story should help others avoid a similar fate.
What Does it Mean to Thrive?
Dr. Pat Baccili, with the Dr. Pat Show, explored this topic on Monday through her radio program. Listen to find out some ways to heal one’s life.
http://www.thedrpatshow.com/play/23277/baccili-20170116-bright.mp3
During the interview, Dr. Pat said, “Only someone like Heidi can take this journey and write about. What she’s writing about is being able to thrive. What does that mean?”
As she talked, she had Thriver Soup in front of her. “It’s really good,” she said. “I was really, really struck by how what you’ve written in this book is really a toolkit for people that are struggling in life with many, many things.”
She said whether someone has cancer or not, “This book right here will help you…because when I go to the section on the ‘Power of Powerlessness,’ that is not a book just for people that are thinking ‘I might die.’ This is a book for those of us that know what it is like to die on the inside as well.”
She said she would use Thriver Soup for people who want to change their lives despite their history or background. “It is a book to get out of that sense of powerlessness.”
Talking with me, she said, “You do this so brilliantly in the book. You talk about looking fear in the face. I think that is so important. But I also love that you talk about looking fear in the face that all of us can do today in our lives.”
What tips do you have for thriving?
Psychosocial Support in Cancer Care
Psychosocial support in cancer care was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo. This was one of several cancer treatment topics that I have been reporting about.
Dr. Yasmin Asvat, clinical psychologist at the Siteman Cancer Center, said, “What is a healthy emotional response to a diagnosis? All emotional responses are valid and appropriate. They’re human responses.”
Initial emotions can include sadness, anger, shock, disbelief, denial, and for a few, acceptance.
“Our bodies are looking for balance to be restored,” she said. “If we are not getting to adjustment and acceptance, how can we live well through this journey?”
Thirty percent of patients experience chronic distress after a diagnosis. “To what degree is the distress interfering with the ability to cope effectively?”
Normal feelings like sadness, fear, and vulnerability can become disabling feelings like depression and anxiety.
“Distress can be experienced throughout the cancer care trajectory,” she said.
Dr. Asvat sees her role as partner in balancing patients’ goals with fears. She tries to provide physical interventions and strategies for fatigue, pain, insomnia, and developing a healthy lifestyle.
What Cancer Patients are Thankful for This Thanksgiving
My two cents’ worth are included on this blog, third response down.
What are you thankful for this Thanksgiving?
Trumping Donald by Creating Beauty
I’m going to make everything around me beautiful. That will be my life.
Elfie Dewolfe, 1859?–1950
A friend who was upset about the recent U.S. presidential election read to me the above quote by an American actress and interior decorator. She now is taking this message even more closely to heart.
Others are deeply upset by the election of Donald Trump. One friend cried, feeling that her entire life’s work on behalf of women suddenly was stripped away.
A blog reader identified this response as a “time of stress for women.” She wrote, “I had hoped that you would speak yet again for those Hidden Voices.” She was referring to my first traditionally published book about women from the Christian Bible who had been silenced for millennia and only now are being heard with the respect they are due.
“Just know that we value your voice, which can console and comfort in facing the unknown future (culturally, socially, politically, in terms of faith, family, etc.),” she added.
Among the unknowns are how peace and justice issues in our nation could be affected. One response has become the creation of a Women’s March on Washington scheduled for Inauguration Day, Saturday, January 21, 2017, from 10 a.m. to 4 p.m. at the Lincoln Memorial, 2 Lincoln Memorial Circle, NW, Washington, D.C. As of today, according to the national Facebook page, 96,000 people are “going.”
Look on the internet and you can find many protests against the election of Donald Trump. If you feel so inclined, these might be a way for you to make your voice heard.
Another outcome that is feared is the loss of medical insurance currently made possible for many through the Affordable Care Act, especially among those with pre-existing conditions—like cancer patients.
I know I would have passed away long ago if I had not had the conventional medical care I needed.
Naturally, this is extremely frightening for some.
Yet we always have options. If there’s anything I learned in psychotherapy, it is that I don’t have to play victim anymore. I have choices I can make. Even author Viktor Frankyl (1905 to 1997), father of logotherapy, had choices while interred in totally controlled Nazi German death camps. And he survived.
I recall a family member who, just a few years ago, did not have medical insurance for surgical removal of large kidney stones. So he got on the phone and called one provider after another, obtaining their price points and then asking the next ones if they could do better.
He got major surgery done for about $5,100, a whopping 83% savings, using the phone and the free-enterprise system.
One cancer patient chose to have her surgery done in India. It cost less to fly over and even do a little vacationing there than having the surgery done in the United States. She was happy with her results.
It’s so easy to experience resignation and take on a co-dependent victim stance. To get out of these moods, I have a practice of stopping the mental stories and instead paying attention to these energy-in-motion (e-motion) sensations of hurt, fear, and powerlessness as physical experiences in my body. When processed in a healthy way, I then rise up into textures such as peace, no-thing, and/or gratitude. My body lets go of the stress and I can make better decisions. This powerful healing process is explained in the “Mapping the Emotions” section of Thriver Soup, pp. 183-235.
Once I complete the map, I am able to do as Elfie Dewolfe says and “make everything around me beautiful.”
Thriver Soup Ingredient
How can you make your life more beautiful right here, right now? I focus on making the world a better place through my blog, speaking, and writing. I’d love to hear what you are doing to make the world a more beautiful place so these ideas can be shared with others.
Getting Hit Below the Belt
We cannot change anything unless we accept it.
C.G. Jung, Modern Man in Search of a Soul
We cannot change something if we are not aware that something is amiss. Awareness of our bodies is critical—especially when it comes to cancer. Awareness of, and then acceptance of anything amiss can be life-saving. The earlier a dis-ease is caught, the more easily it is healed.
September is Gynecologic Cancer Awareness Month, created to help everyone become more aware of women’s cancers below the belt.
Symptoms can include unusual periods, bleeding after menopause, pelvic pain or pressure, a rapidly growing uterine fibroid; even back pain or bloating. Here is a chart outlining the symptoms for these various cancers: http://www.cdc.gov/cancer/gynecologic/basic_info/symptoms.htm . Learn the symptoms and watch for them. If they crop up, please go see a gynecologist.
During 2001 I had a dream in which I was warned I could get punched in the gut. Eight years later I had stage 4 uterine sarcoma. This year about 59,000 women will be diagnosed with uterine cancer, and one in six will pass from it.
Ovarian cancer is the second most common gynecologic cancer, affecting about 21,000 new patients. And about two-thirds will pass from the disease because it’s usually caught when already spreading.
Cervical cancer comes in as the third most common, with 12,000 new cases identified. About 4,000 will lose their lives to it.
Vulvar cancer will be diagnosed in about 5,000 women, and about 1,000 will succumb; and 4,070 will be diagnosed with vaginal cancer, which will claim about 1,000 lives.
Watch for symptoms. Be aware. If you notice something, accept that it is there. Get it checked. It could save your life.
Thriver Soup Ingredient:
Knowledge is power—patient power, says Annie Achee, president of the National Leiomyosarcoma Foundation. If you hear a woman talking about symptoms of gynecologic cancer, please suggest getting them checked by a physician.
Sources:
http://www.foundationforwomenscancer.org/about-gynecologic-cancers/
American Cancer Society, Inc.
Thriver Soup Thursday–So this Writer Walks into a Chocolate Bar…
The divine drink, which builds up resistance and fights fatigue. A cup of this precious drink [cocoa] permits a man to walk for a whole day without food.
Montezuma, Aztec Emperor (c. 1480-1520)
I agree that chocolate is heavenly. This summer I sought the sublime through a self-styled safari for savoring some sensuous sweets.
First stop: Pittsburgh, to visit my friend Judy and give my talk, “Subduing the Cancer Dragon,” at the local cancer patient organization.
Judy directed me to the local chocolate store and I bought a couple expensive bars for us to indulge in.
“Life is too short for cheap chocolate,” I told Judy. Turns out it wasn’t an original utterance, yet we enjoyed repeating it.
Then off to Long Island for ten days, with frequent jaunts into Manhattan. One day, armed with my mapped-out list of chocolate boutiques, I boarded the train to Penn Station, then the subway heading to the farthest location. I meandered to each boutique on my map, filling little sacks with truffles to savor as I walked.
After several hours I strolled into La Maison du Chocolat and noticed a short set of stairs going up to another room with chairs and tables. I wandered up and into my first chocolate bar.
It was a cocoa lover’s paradise. The extensive menu featured chocolate desserts, including a page dedicated to their truffles paired with teas.
Fortunately I had walked for hours without getting lunch. I sat down and ordered two desserts—an almond-flour chocolate cake and La Traviata, their best seller.
For an hour I surrendered to a sensual and sublime sugary samādhi.
Filled with divine refreshment, I continued my trek into boutiques and back to the train station. Yup, I could walk all day on chocolate. And walk all day for such a precious, divine treat.
Thriver Soup Ingredient
If you love chocolate yet want to limit your sugar intake, I found that for me, chocolates sweetened with erythritol were the best non-sugared treats. A good option for an occasional treat might be dark chocolate made with organic raw cane sugar.
To avoid gluten, dairy, cane sugar, and soy, I make my own fudge. Combine 1 cup each of organic coconut oil, raw organic honey, and raw organic cocoa powder. I add a teaspoon of vanilla flavoring and lots of organic, raw pecans that have been soaked overnight in salt water, then dehydrated. I mix it well, then store it in my refrigerator for an occasional treat.
Thriver Soup Thursday–She’s not The Statue of Liberty
Enlightenment is man’s emergence from his self-incurred immaturity.
Immanuel Kant (1724–1804), in his essay, “What is Enlightenment?”
The philosopher Immanuel Kant gave this answer to the question “What is Enlightenment?” in an essay published during 1784, nearly 100 years before the Statue of Liberty was built.
But “Statue of Liberty” isn’t the true name of the giant green goddess-like figure overlooking New York City’s harbor area. She was officially named the statue of “Liberty Enlightening the World.” I realized during a recent trip that to call her simply “the Statue of Liberty” is to miss the point of her name. The liberty she represents has a defined purpose—to bring enlightenment the world.
The copper colossus, designed by French sculptor Frédéric Bartholdi, was intended as a 100-year birthday present from the French to the people of the United States. Construction of the statue and the pedestal was completed in 1886.
Originally the statue stood for shared political freedom between the United States and France. Poet Emma Lazarus expanded this view to include hope against external sources of tyranny:
… Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. … “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”
Yet “liberty” and “enlightenment” mean so much more.
Kant had put the word enlightenment into a personal context a century earlier. “Enlightenment is man’s emergence from his self-incurred immaturity.” Kant’s motto of enlightenment was “Sapere aude” – Dare to be wise.
As humans take more responsibility for their personal lives, they find more freedom within themselves to act from a place of authenticity. This brings more awareness into their lives, which in turn spreads more light to others. When enough people experience this internal freedom, then perhaps humanity will reach a critical mass in consciousness and the whole world will experience more freedom, maturity, and wisdom.
It must start with each of us as individuals. Do I dare to develop the courage to emerge from my self-incurred, self-limiting immaturity? Do I dare to be wise?
I wasn’t ready to tap into my deeper levels of courage until my cancer journey forced me to dare to emerge from my self-incurred immaturity. Right after the sarcoma diagnosis in 2009, when I was in New York City, I apparently was ill-prepared for the privilege of visiting Liberty Enlightening the World. Unbeknownst to me, I first needed to grow up and heal my life. I missed the last ferry to the island that year, and put a visit to the green queen on my bucket list.
When I visited her this summer, five years into Radical Remission, I was ready to receive the full impact of her message of internal liberty and the resulting enlightenment that can be shared with the world.
I even ascended the double-helix passage up to the crown for an in-spirational view from on high.
And so I share Liberty Enlightening the World’s message: Dare to break out of self-incurred immaturity. Dare to be wise. Dare to lift your torch beside your own golden door and open it to share your brilliant light with the world.
Thriver Soup Ingredient
If you want to climb to the crown of the statue, purchase your tickets several months in advance. Only 500 people among the thousands who mill around the pedestal are allowed up into the crown each day.
Sources
https://en.wikipedia.org/wiki/Answering_the_Question:_What_is_Enlightenment%3F
http://fiveminutehistory.com/liberty-enlightening-the-world/
Thriver Soup Thursday: Go Ahead–Walk on Water
So Peter went down from the boat and walked on the water, to come to Jesus.
Matthew 14:29, Christian Bible
One night Jesus strides on the surface of a lake toward the boat containing his disciples. One of the passengers, Peter, also wants to walk on the water. For a short time Peter has the faith to move across the choppy surface. He steps completely outside his comfort zone, completely outside his way of perceiving the world, and does something extraordinary. He is truly alive for that brief moment.
I want to fully live my life, which is a longing that springs from years of deadly uterine cancer treatments and threats of hospice. This attitude has helped me face down many things I previously had feared, and to try new experiences my former self would have done anything to avoid.
Prior to 2009, I would never have considered driving in downtown Manhattan, New York. Especially during rush hour.
Well, in June I chose to drive through Manhattan to get to Long Island. After getting lost and rerouted, guess what time I pulled onto the Big Apple? 4 p.m. Just in time for rushing waves of traffic.
Ahead of me there was not a single accident on my route to the Queens–Midtown Tunnel. There were two.
My sister suggested I take a Zen approach and simply allow. So I did, settling into the fact it could take hours to traverse a handful of city blocks. Yet I also decided I was going to be something new, something different, something I had never tried before. I chose to be a bad-as_ behind the wheel.
My brother-in-law had demonstrated how to drive in Manhattan when he helped me get around for my visit to Memorial Sloan-Kettering Cancer Center during 2009. Be pushy. Honk plenty. Don’t give any room. So I picked up his procedures.
I’d already blared my horn for several minutes to get my sister’s attention so she could find me sitting in a traffic lane. I didn’t budge out of anyone’s line of driving until she was safely buckled in next to me.
At one intersection I crossed only partway and sat in a traffic lane, blocking the perpendicular flow. A man in a big black SUV in an oncoming turning lane honked at me, trying to inch his way in front of my little gold Prius. I crept forward. He yelled at me through his open window and tried again to edge me out. As I was able, I moved forward a little more. This scene continued for several heated minutes.
Finally he gave up. He called me an as_-hole (worse than bad-as_), pulled back and passed behind me. “Oh, Ohio! No wonder!”
I chuckled. I had been enough of a bad-as_ to rouse swearing in another driver. I had stood up to a big bad truck with a driver who might well have rammed my little car. I had played with a Big Apple Boy and hadn’t let him cow me.
Like Peter, I followed someone’s example of living life more fully, and moved completely out of my comfort zone. I faced my fear. And I didn’t sink.
Buoyed by my little personal triumph, I trickled my car forward, eventually got through the tunnel, and made my way to our accommodations.
I had lived fully in those moments. I have no desire to repeat them, yet I have added fresh, new experiences to this adventure called life.
Thriver Soup Ingredient:
Is there something you’re afraid of trying, yet know you would be glad you did? Don’t focus on the fear. Focus on the end result—the feeling of satisfaction of having faced the fear and triumphed. I see this as a way of walking on water ourselves.
Sources:
Lamsa, George M. Holy Bible: From the Ancient Eastern Text: George M. Lamsa’s Translation From the Aramaic of the Peshitta. Harper & Row, May 8, 1985.
https://commons.wikimedia.org/wiki/File%3AMielno_witraz_Piotr_chodzi_po_jeziorze.JPG