Rare Artist Reception Photos
The Rare Artist Reception, a most important event of the 2017 Rare Disease Week in Washington, D.C. showcased Rare Disease artists from 2015 and 2016 entries. The artists of these beautiful artworks are patients – of all ages, in the US and Canada. Very heartwarming messages are provided along with each art piece, making it so meaningful by the symbolic expression of the rendered artwork.
12-year-old artist from Toronto Canada honoring her service dog Tory
This self-portrait symbolizes the power of the mind to conquer a disease /disability challenge of a rare disease.
“Ten Redefined” is a depiction of the sudden, intense pain of a debilitating disease that challenges one’s state of mind and body.
“Zebras Matter,” a revelation of the body and mind . . . what is within.


“Girl With a Pearl Earring.” recreated by the artist who was inspired by a renowned artist with the same titled painting.
How to Survive Hospital “Nutrition”
How to Survive Hospital “Nutrition”
By: Heidi Bright, M.Div.
http://www.heidibright.com
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.
From 1988 to 1993 there were over 2,700 articles dealing with milk recorded in the ‘Medicine’ archives. … They were only slightly less than horrifying. First of all, none of the authors spoke of cow’s milk as an excellent food, free of side effects and the ‘perfect food’ as we have been led to believe by the industry. The main focus of the published reports seems to be on intestinal colic, intestinal irritation, intestinal bleeding, anemia, allergic reactions in infants and children as well as infections such as salmonella. … Contamination of milk by blood and white (pus) cells as well as a variety of chemicals and insecticides was also discussed… In adults the problems seemed centered more around heart disease and arthritis, allergy, sinusitis, and the more serious questions of leukemia, lymphoma and cancer.
Robert M. Kradjian, MD

While staying in the hospital after my abdominal surgery, I was started on a clear liquid diet. Then I was moved to a “full” liquid diet. It consisted of adding dairy, wheat, sugars, and petrochemicals to the menu through milk, ice cream, cream soups, and artificial colorings and flavorings.
Fortunately, before the surgery, I was able to talk to a hospital dietitian to let her know my body does not properly digest dairy or wheat, I did not want sugar, and I needed a substitute with protein.
She suggested soymilk. Too estrogenic for me with my cancer background, I said.
She was temporarily at a loss for how to help me get something more substantial on my “full” liquid day. Then she remembered she could get me some almond milk.
That works for me, I said.
I knew this would be a problem because the last time I went through abdominal surgery I was still limited to clear liquids during the 24 hours when I was supposed to get “full” liquids. I felt like I was starving after not having eaten for more than a week. I desperately needed protein and the hospital did not supply any.

The almond milk option indicated to me that hospitals are getting a little more up to speed on what actually is nutritious and what is not.
Another indicator is the hospital-floor refrigerator unit available to patients. When I stayed in the hospital years ago, those refrigerators were full of sodas. I cannot imagine anything worse for someone and who has had abdominal surgery than to add carbonated beverages that fill the abdomen with even more gas than is already added through surgery. My hospital roommate 25 years ago was drinking soda and complaining bitterly of her terrible gas pain. She did not make the connection between the soda gas and her gas pain.
So I am grateful hospitals are moving in the right direction.
However, there is still work to be done. I needed something substantial without dairy, wheat, sugar, or petrochemicals. I am grateful they did have the almond milk option.
And the hospital refrigerators… see the pictures of what they offered. Items filled with dairy, sugar, and long lists of unpronounceable chemicals. Really? For people whose bodies are so compromised they are in hospital beds?

Where are the fruit and vegetable smoothies? Where are the probiotic drinks? Or perhaps even trays of fresh fruits and vegetables for those ready for them?
Perhaps part of the reason the hospitals are not supplying these foods is because Americans are not used to eating them and therefore the foods might rot in the fridge unless health nuts like me come along to eat them.
And real food is more expensive than these standard options. Hospitals probably don’t have big enough budgets to provide real food for every patient.
Unfortunately, a poor diet can lead to health conditions that land one in the hospital to begin with…
Thriver Soup Ingredient:
If you are going to stay in the hospital, find someone to bring you better quality food for each stage of recovery.
Source:
Robert M. Kradjian, MD, Breast Surgery Chief Division of General Surgery, Seton Medical Centre, Daly City, CA, from http://www.notmilk.com/
THE MILK LETTER : A MESSAGE TO MY PATIENTS Robert M. Kradjian, MD Breast Surgery Chief Division of General Surgery, Seton Medical Centre #302 – 1800 Sullivan Ave.
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What Does it Mean to Thrive?
http://www.thedrpatshow.com/play/23277/baccili-20170116-bright.mp3

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.”
Psychosocial Support in Cancer Care
Psychosocial Support in Cancer Care
By Heidi Bright, www.thriversoup.com
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.
Coping with Cancer’s Financial Aftermath Summarization
Installment # 3 of: Coping with Cancer’s financial aftermath article highlights summarized:
Advances in LeioMyoSarcoma Surgery
Heidi Bright, M.Div.
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.com/
Hidden Voices: Biblical Women and Our Christian Heritage http://www.helwys.com/sh-books/hidden-voices/
Advances in LeioMyoSarcoma 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.
Couples After Cancer: Growth for Some, Loss for Others
Surgical Management of Uterine Smooth-Muscle Tumors
Author: Heidi Bright, M.Div.
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.com/Hidden Voices: Biblical Women and Our Christian Heritage http://www.helwys.com/sh-books/hidden-voices/
Surgical management of uterine smooth-muscle tumors 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.
Matthew Anderson, associate professor and director of research (gynecology) at Baylor University, said “Uterine leiomyosarcoma is a unique disease.” As many as 80 percent of women are impacted by a uterine smooth muscle tumor. About 200,000 hysterectomies are performed every year, which costs $3 to $5 billion.
“The only way to know if it’s malignant is to surgically remove it,” he said, because there are no diagnostic markers and no blood tests that can be used to determine malignancy.
Leiomyomas can arise in unusual locations. If they are morcellated, they can create other problems down the road. These myomas tend to respond to hormonal therapy.
They generally don’t tend to respond to chemotherapy or radiation.
About 70 percent of uterine LMS are discovered as isolated uterine masses. Recurrence rates are 40 to 70 percent.
With surgical debulking, doctors can increase progression-free survival from 6.8 months to 14.2 months.
Resection of pulmonary metastases can improve disease-free survival by as long as 24 months. This can include extensive resections while preserving good functional lung status.
Surgery by itself is not the answer. Unseen cells can come back. Ultimately patients have to rely on chemotherapy.
On April 17, 2014, the US FDA issued a safety communication regarding the use of power morcellation for performing hysterectomies or myomectomies. This led manufacturers to withdraw the devices and hospitals generally are not using this method.
Impact: 99 percent of the time, the uterine tumor is not cancer. Yet demand from patients for minimally invasive hysterectomies continues.
There is one case of ULMS in every 1,960 cases.
Short-term, the risk of ULMS should be discussed thoroughly with each patient.
The long-term goal is to develop a diagnostic test that can be used to determine malignancy.
Chemotherapy Clinical Trials
Heidi Bright, M.Div.
http://www.heidibright.com
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.
Hidden Voices: Biblical Women and Our Christian Heritage http://www.helwys.
Chemotherapy clinical trials for leiomyosarcoma (LMS) were discussed 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.
There are 70 different types of sarcoma, and treatment is moving toward individual types of sarcoma using genetically specific molecular therapy, said Dr. Scott Okuno, Chief Medical Officer in Sarcoma Alliance for Research Through Collaboration, a non-profit research cooperative, and professor of oncology at Mayo Clinic.
“As we get deeper into LMS, we find molecular subtypes of LMS,” he said.
He explained that adjuvant treatment is preventative. Typically a tumor is removed and the patient is given additional treatment to eradicate microscopic metastatic cells.
Neoadjuvant treatment is given prior to removal/ablation of a tumor, and is used to shrink the tumor and eradicate any microscopic metastatic cells.
In determining which path to follow, the physician will look at outcomes. For neoadjuvant treatment, for example, perhaps 33 percent (about three of 10 patients) will have a recurrence.
With adjuvant treatment, there might be another 33 percent reduction in recurrence—which means instead of three out of 10 patients with recurrence, there will be two out of ten patients with recurrence.
Chemotherapy is given when a tumor cannot be surgically removed.
In clinical trials, a tumor has to decrease in size by 30 percent to be considered a partial response.
Progression has to be a greater than a 20 percent increase for the treatment to be considered no longer working.
Sometimes the lump might get bigger but the tumor is dying, so the percent increase in size is allowed. One needs a sarcoma specialist to determine if the growth is from dying cells or from a growing tumor.
Dr. Mohammed Milhelm, director of the Melanoma Program at the University of Iowa, added, “We really don’t know what’s going on inside the tumor.”
Dr. Okuno said Gemzar and Taxotere together aren’t showing much difference beyond just what Gemzar can do. Dacarbazine alone doesn’t make much difference. Yet when Gemzar and dacarbazine are combined, patients tend to have better outcomes. A difference in outcomes also was found in the rate of infusion—for example, infusing the same amount of chemotherapy over a longer period of time can result in better outcomes.
Immunotherapy as a cancer treatment
Heidi Bright, M.Div.
http://www.heidibright.com
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.
Hidden Voices: Biblical Women and Our Christian Heritage http://www.helwys.
Immunotherapy as a cancer treatment 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. Mohammed Milhelm, Holden Chair of Experimental Therapeutics at the University of Iowa, said “Sarcoma doctors aren’t happy with the current treatments available. I’m trying to move immunotherapy into sarcoma treatment.”
Historically, immunotherapy is used to stimulate the immune system, yet if our immune systems are always accelerated, we would not live. “We have a good brake system in our bodies,” he said.
Immunotherapy is using the body to target the tumors. “A lot of people are thinking about immunotherapy in combination with other treatments,” he said. “We are still trying to understand how the immune system works. It’s tricky and complicated.”
A lot of questions are coming up about how to do immunotherapy. Sometimes imaging months after treatment ends might show significant improvements. Combining immunotherapy with radiation might help the immune drug work better.
Newer, more powerful drugs are on the horizon. “We’re learning a lot from the melanoma world and trying to transfer it to other cancers. There haven’t been enough immunotherapy treatments with LMS to know if it is effective.”
Swelling can be a big problem, especially in the bones and the brain, and is a concern researchers still don’t know how to address.
There is a lot of promise right now, but researchers don’t yet know how to translate it into treatments for LMS.
Clinical Trials and Leiomyosarcoma
http://www.heidibright.com
Author, Thriver Soup: A Feast for Living Consciously During the Cancer Journey http://thriversoup.
Hidden Voices: Biblical Women and Our Christian Heritage http://www.helwys.
Clinical trials for leiomyosarcoma (LMS) were discussed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo. This was one of several cancer treatment topics that I will be reporting about during the coming weeks.
Dr. Peter Oppeli, assistant professor of medicine at the Washington University School of Medicine, said LMS is one of the more common types of soft-tissue sarcoma. It is found in smooth muscle cells that naturally occur in the intestines, blood vessels, and the uterus, all of which are in charge of involuntary action in the body. For pregnant women, these muscles play a key role in labor and delivery.
LMS can originate anywhere smooth muscles are found. In almost half of all new LMS diagnoses, it is found in the uterus. It also occurs in the body’s extremities and in the abdominal cavity, especially in the back part of the abdomen.
There are about 2,000 new diagnoses each year. Compare that to another type of cancer, such as colon, which has about 135,000 new diagnoses each year.
Because LMS is rare, it is more challenging to come up with treatments. Any new drug for a rare disease is cause for a lot of excitement. Trabectadine, for example, was approved by the FDA in October 2015.
New drugs are approved when they show proven benefit from a clinical trial.
Clinical trials are research studies for understanding cancer and how to treat it. Trials can look at new drugs, combinations of drugs, ways to ease side effects, new forms of radiation, and new surgical methods.
A Phase 1 clinical trial is for finding the right dose and finding out the treatment’s side effects.
A Phase 2 trial involves larger groups of patients. In a Phase 3 trial, large number of patients are treated to confirm effectiveness.
The vast majority of clinical trials do not have a placebo-only option. Placebos usually are combined with standard effective treatment, so every patient gets what is determined to be the best treatment.
What is research protocol? It is the rule book for each clinical trial. Each trial will have a unique/specific protocol that describes inclusion and exclusion criteria for potential treatment.
Is a clinical trial going to help a particular patient? “We hope so, but cannot say with certainty that enrolling is going to be beneficial,” Dr. Oppeli said.
Almost every standard treatment has first been proven effective in clinical trials.
After his talk there was a 10-minute time period for questions.
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.
Thriver Soup Ingredient:
For more information on clinical trials, go to www.cancer.net for a large video library.
Helpful Resources for Caregivers
” Our families, our good friends all help find important things
when we have lost them . . . things like our smile, our hope,
our strength, and our courage.”
Supporting one another is a huge part of this journey . . . .
Patients, their family/caregiver, along with the patient’s oncologist/medical care team – all have an important role to play in terms of working together, communicating, and helping the patient get through a difficult diagnosis, treatment journey, and maintenance phase after treatment. The level of teamwork makes all the difference for – for everyone involved.
- When a family member is afflicted with cancer, giving care and support during this time can be difficult. Often times, caregivers have to put their feelings and needs aside to care for a person dealing with cancer, which can be taxing to their health in the long term. The National Cancer Institute has an excellent booklet on how a caregiver can take care of their self so they can take care of others. Click on the link below to download the booklet from the National Cancer Institute :
https://www.cancer.gov/publications/patient-education/when-someone-you-love-is-being-treated
- The National Cancer Institute has many helpful resources for caregivers, who can benefit from helpful messages of encouragement, understanding, and guidance to keep them going in caring for their loved ones struggling with the cancer journey.
https://www.cancer.gov/about-cancer/coping/caregiver-support
- What a Cancer Caregiver Does
- Family and Medical Leave Act (FMLA)
- Managing Insurance Issues
- Caring for the Patient With Cancer at Home
- More Caregiver Resources
- If You’re About to Become a Cancer Caregiver
- Connect With Other Caregivers – Cancer Survivors Network
- More Coping Resources
- What You Need to Know as a Cancer Caregiver
- Caring for the Patient with Cancer at Home
- Caring for Someone Nearing the End of Life
- Being a Caregiver [PDF, 202Kb]
Caregiver’s Corner-Caregiver Support
“My Best Advice as a Caregiver” by Annie Achee of the National Leiomyosarcoma Foundation
Leiomyosarcoma (LMS) is one of 50+ subtypes of sarcoma – 13 -17% roughly of all sarcomas. Sarcoma is 1% of all cancers. LMS is a designated rare disease.
not to make any mistakes or miss something I could have prevented. I was empowering myself, and
I did not even think about it that way at the time. But looking back, I am glad that I approached my
caregiving role in that way.
of our appointments – about three weeks ahead, to be respectful of her time, and allow for time
to respond.
- Take care of yourself. You must stay healthy so you can be well enough to care for your loved one.
- Don’t lose your sense of humor. Watch a funny movie together – to give you both a break from stress and anxiety, even if it is for just a little while. The old adage “laughter is the best medicine” still applies!
- Seek an oncological massage for your loved one; have one yourself – some cancer treatment hospitals offer oncology massages for stress release.
- Stay connected with friends. They can be a source of support and strength.
- Keep notes (a journal perhaps) of your loved one’s treatments and appointments. I kept a medical appointment notebook, with pocket tabs for CT/MRI scans /reports, blood labs, my notes; information from the oncologist, a list of questions to ask. This helped to stay organized and be able to prepare for the next appointment by having previous appointment information readily available in chronological order.
- Finally, the National Cancer Institute has a resource information for caregivers –“Caring for the Caregivers.” Go to: http://www.cancer.gov/
publicatons/patient-education/ caring-for-the caregiver
National Leriomyosarcoma Foundation
Caregiver for 5 years