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.
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.
Get Thee to an ER
My bowels well up, and rest not; days of affliction have confronted me. 
Job 30:27, Darby (Christian) Bible Translation
From Dec. 12 to 14 I sat in my easy chair in pain, my bowels welling up, gassy, and juicy. My stomach kept emptying itself into the pot I kept handy. Hot water bottle, massage, playing healing sounds… all to no avail. Nothing could go down, nothing was coming out.
I finally called my doctor. “Get Thee to an ER,” he said.
When we hung up, my friend Laura Dailey, whom I had not seen in weeks, was parked on my driveway. What an angel she has always been for me. She promptly took me to the hospital.
The ER doc found a twisted small intestine on the CT scan, something I’d been warned could easily happen after my initial nine-hour cancer surgery in 2009. In 2011 I had an intestinal blockage that resolved, and in 2012 a hernia had been spotted on a scan, but my oncologist suggested I leave it alone unless it became a problem.
It had become a problem.
I texted my 19-year-old son to update him on my status. He dropped everything, went to my house to pick up a few more things, and came to the hospital to stay throughout my days of affliction. I feel so blessed.
A stiff yet flexible plastic gastro-intestinal tube was placed through my nose down to my stomach. I’d had one in 2009 for my first cancer surgery, but it was placed while I was under anesthesia. This time they placed it with me fully awake. One nurse said, “This is the worst torture we do to our patients.” I had to keep my head down and swallow a cup of water while the nurse struggled to get that hose down into my gullet. I gagged and coughed as it went down, then suddenly felt very cold and shook violently for several minutes. The severe throat pain began.
The next morning the surgeon said portions of the intestines had poked through the hole and could die if he didn’t operate. My sister, epidemiologist Dr. Roselie Bright, participated in the conversation by phone and urged me to move forward with the surgery, even though my abdomen had started softening. I opted for surgery.
There was no time to pick up the Surgical Support Series CDs from my psychotherapist. As a substitute, I repeatedly played tai chi Grandmaster Vince Lasorso’s “Relief” recording through my Wholisound Serenity Box using a new portable CD player Laura bought me for this purpose.
Laura alerted people via Facebook. Many thanks to all who supported and prayed for me!
It was another 12 hours—Thursday night—before I was wheeled onto the operating table. The surgeon updated my Superwoman abdominal scar with a 4-inch replacement.
With pain medication the tube was more tolerable, but talking still was quite difficult. What a blessing to get that tube pulled on Saturday! That enabled me to get off daytime pain medication (which distressed the nurses) and then off all medication when I went home Sunday, 2.5 days before expected. My days of affliction are over and I’m recovering well. I am thankful for the miracles of modern medicine.
Thriver Soup Ingredient:
The nurses were distressed about my not taking daytime pain medication or taking home a pain prescription. “You need to stay on top of the pain,” I’ve been told. Well, I didn’t have pain. I only had discomfort. Part of the reason, perhaps, is because my inflammation level normally is extremely low (0.3 on a scale of 1 to 4). I keep it low with my diet. A lot of pain comes from inflammation, so without excess inflammation, injuries ares much more tolerable. If you are in pain, try reducing inflammation in your body by avoiding inflammatory foods, which can be measured with a blood test looking for C-reactive protein.
Happy New Year!
May you thrive in 2017!
Happy Holy-days!
This past week’s blog wasn’t posted because I was sitting in the hospital with a painful gastric tube down my nose and no computer.
I remain free of evidence of cancer. I will blog about that in 2 weeks.
Two weeks ago I tried sending out the blog using a new browser and only half the blog emails were sent, so if yours didn’t arrive, please check “Achieving the Best Sarcoma Outcomes” http://thriversoup.com/2016/12/08/achieving-the-best-sarcoma-outcomes/. I always post when possible, and this week I will return to the original browser that usually sends the emails correctly.
Have warm and wonderful holy-days!
Achieving the Best Sarcoma Outcomes
Achieving the best outcomes with sarcomas 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 am reporting about during the coming weeks.
Dr. Angela Hirbe, assistant professor of medical oncology at Washington University School of Medicine, spoke first, and said, “We know the best sarcoma outcomes are achieved by multidisciplinary teams.”
Dr. Brian Van Tine, Sarcoma Program Director, Siteman Cancer Center, said there are about 40 sarcoma doctors in the United States and they meet once a year to talk about what’s coming and what’s working. “We’ve dedicated our lives to doing something about these poor outcomes compared to other cancers. It is a world-wide community of sarcoma doctors that is still quite small. It’s a tight community.”
He added that in-house clinical trials are investigator-initiated. Dr. Van Tine, for example, would use institutional funds for an in-house clinical trial, so he would be limited in what he can do.
A lot of clinical trials have interim times to see if a trial is helpful or not. Then if not shown effective, the trial is stopped. If the results look promising, the trial continues.
Advances in LeioMyoSarcoma Surgery
Advances in LeioMmyoSarcoma surgery 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 am reporting about during the coming weeks.
Jeffrey Moley, associate director of the Siteman Cancer Center, said LMS can occur anywhere in the body and has a 50 percent mortality rate. It most commonly is found in the extremities of the body. Nineteen percent of sarcomas are LMS. High-grade LMS has a greater than 50 percent chance of metastasizing; low-grade has a less than 15 percent chance.
Sarcomas are the only cancers that are graded.
During surgery, the doctors always try to get a negative margin. To avoid amputation, one good option is to do limb-sparing surgery followed by radiation. This decreases the chance of a local recurrence by 30 percent.
MRIs and CT scans give pretty much the same information to the doctors.
The definitive treatment is complete surgical resection.
For abdominal and retroperitoneal tumors, sometimes repeat operations can be very effective, especially for low-grade sarcomas.
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?