Tag Archives: uterine sarcoma

Wrestling a 24-pound Turkey

“Ask and it will be given to you…”

Matthew 7:7, Christian Bible

I have come to believe when we put forth effort in certain directions (though not always), and ask for assistance, the Divine tends to step in and support us. It’s sort of a “God (sometimes) helps those who help themselves” perception.

I’m in my mid-50s and had never, before this year, cooked a whole turkey on my own. Recently my friend Cynthia Wells sold me her freezer so I knew I would have space this Thanksgiving to store leftovers.

I drove to Red Sun Farm in Loveland, Ohio. There, I could see white heirloom turkeys roaming a field of sunshine, and I signed up for a whole gobbler.

Shortly after making my deposit, I got a postcard from La-Z-Boy offering me a free carving set because I had purchased a replacement chair from them. I wasn’t expecting much, but my beautiful new large knife and fork have ceramic handles. I was all set to slice meat with my new poker and sabre.

Or so I thought.

Right before Thanksgiving I drove to the farm to pick up my poultry.
Kind of.
The bird weighed more than 24 pounds. 
Mind you, I had two broken fingers from falling off a galloping horse a few weeks earlier. (With two fingers taped together, I am in training to “Live long and prosper.”) And I’m also not supposed to carry heavy loads because of all my abdominal surgeries, including for uterine sarcoma.

I barely managed to pick up the box anyway and lug it to my Prius trunk.

Thanksgiving morning, I got out the roasting bag and read that it was only for meat up to 24 pounds. My turkey was bigger than that. Still, I managed to clean up and wrestle that weighty gobbler into its bag. And close the tie.

Once in the bag, I had a new problem. My pan was not big enough for a 24+-pound fowl. What to do?

I asked in prayer: Any ideas? You got me this far, please keep it coming.

Ten minutes later the answer popped into my brain. Use aluminum foil to form a basin.

I made the foil fowl bowl and managed to plop my big-bird-in-a-bag onto it. Into the oven it went. Whew.

After it finished baking, my son and I agreed it was too heavy to pull out, so we cut open the bag and left it in the oven. My nice new carving set made slicing so easy.

I felt so supported making this turkey. My freezer now contains bags of organic, free-range meat and multiple jars of deeply nourishing turkey bone broth.

The broth is perfect for making my hearty “thriver soup” with local organic Napa cabbage and onions from Earth-shares CSA in Loveland, fresh local potatoes from Harvest Market in Milford, and Shiloh Farms organic lentils I am sprouting (available through Jungle Jim’s in Eastgate), all in the Cincinnati, Ohio, area.

Thriver Soup Ingredient:

It would have been easy for me to assume the idea to put the turkey in an aluminum foil bowl was my idea. I think, however, because so many details had lined up before this request, I was being supported by an idea from the Divine. I gave thanks.

If you ask for information, pay attention to your thoughts. An idea might suddenly arise. It probably will be easy to miss, or dismiss, but if you are paying attention, you might recognize it as a gift and give thanks.

How to Manage Your Emotions

Enlightenment, peace, and joy will not be granted by someone else. The well is within us, and if we dig deeply in the present moment, the water will spring forth.

Thich Nhat Hanh, Peace is Every Step

 

Digging deeply into the present moment can be enraging, terrifying, or sorrow-filled. That’s why many of us are experts at avoiding our feelings, at living in our heads, at focusing on thinking and doing rather than being.

When we are stimulated into raw emotions such as rage, terror, or grief, we experience uncomfortable physical sensations in our bodies—a red face, butterflies in the stomach, an ache in the heart. This happens because our brains are programmed to respond to threatening stimuli by dumping chemicals into our bloodstreams, according to Jill Bolte Taylor, PhD, author of My Stroke of Insight.

“It takes less than 90 seconds for one of these programs to be triggered, surge through our body, and then be completely flushed out of our blood stream,” she said.

Hearing this on her CD, I got my own jolt. She was giving a physiological explanation for what my psychotherapist had taught me, a practice called the map the emotions. Practicing the map provided me with enormous assistance for successfully navigating the traumas I’ve endured since 2009—end-stage sarcoma, then divorce, then the loss of my 19-year-old.

And suddenly the experience of grief rising, cresting, and crashing like ocean waves made sense.

During those 90-second surges, I had practiced staying with the physical sensations in my body without thinking about them, analyzing them, judging them, or making stories about them. I did not have a choice about what happened those first 90 seconds inside my body. I did have a choice how I would respond. I could observe and accept the sensations, staying in my body and in the physiological experience; or I could ignore the sensations and get stuck in emotional pain.

After the 90 seconds were over, I had another choice. Was I going to turn my attention to the source of that stimulation, allow my negative story-teller to re-weave a web of drama, get emotionally triggered again, and continue the pain?

Or was I going to live in the present moment, turn my attention away from the trigger, and choose to let the experience go?

Sometimes I allowed myself to be triggered repeatedly for more than an hour. Yet I stayed with the practice of experiencing the physical sensations with each surge of emotion. Finally I would want some peace and I chose to stop setting off my brain’s limbic system with my thoughts.

It takes practice, like any other skill. Allow time to develop these new thinking and behavior patterns. If you choose this practice, be gentle with yourself as you learn this new way of engaging your thoughts and emotions.

By practicing the map of emotions, I made a conscious choice. I became response-able. Taylor said, “If you re-channel those energies into being aware of what is going on in the present moment, you will be able to make a breakthrough and discover joy and peace right in the present moment, inside of yourself and all around you.”

You will be digging deeply in the present moment, and the water of life will spring forth.

Thriver Soup Ingredient:

If you feel a sudden surge of emotion, focus on the physical sensations it creates. Notice how it moves around or possibly gets intense. Notice it lift after 90 seconds. Do all of this without engaging your mind. See if it brings you a sense of peace or relief, and watch your thoughts to see if they want to re-engage with the initial trigger.

Sources:

Thich Nhat Hanh, Peace is Every Step: The Path of Mindfulness in Everyday Life (New York: Bantam, March 1, 1992), pp. 41, 42.

Jill Bolte Taylor, My Stroke of Insight: A Brain Scientist’s Personal Journey (Viking, New York: 2008), pp. 146, 148, 152.

Photo: http://www.publicdomainpictures.net/view-image.php?image=5127&picture=breaking-wave

Discover 3 Kick-butt Keys to Thriving Despite Cancer

Discover 3 kick-butt keys to thriving despite cancer. Important attitudes, behaviors, and major life choices are explored in this episode of Breast Friends Cancer Support Radio network. Listen for tips on managing chemotherapy, the difference between being healed and being cured, reducing pain levels, and getting out of the hospital early. Find genuine hope and practical options to improve outcomes.
https://www.voiceamerica.com/episode/97339/3-keys-to-thriving-after-cancer

 

Sharing my Story with the Northwest Sarcoma Foundation

Click here for my brief story

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.

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.

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.

Surgical Management of Uterine Smooth-muscle Tumors

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.

Beyond Immunotherapy: Metabolic Treatment for Cancer a Possible Future Option

Cancer metabolism 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. Brian Van Tine, sarcoma program director at the Siteman Cancer Center in St. Louis, spoke on “Understanding Your Cancer’s Metabolism.”

Some cancer therapies currently in use involve attempts to change metabolism through diet to alter the course of cancer.

Van Tine, however, said, “There is little you can do with your diet to alter the course of your tumor outcome. Metabolism is tricky. It’s like a wonderfully orchestrated watch.”

If you try to put a halt in the system, the body will try to go another way to accomplish the same task, he said.

When cancer cells are born, they have a different metabolism from the rest of the body. The purpose of cancer is to grow. In the metabolic process, nine out of ten cancer patients don’t have a urea cycle (https://www.ncbi.nlm.nih.gov/books/NBK27982/ )  and don’t express ASS1 (https://www.ncbi.nlm.nih.gov/gene/445) in their tumors.

These two conditions make Leiomyosarcoma patients prime candidates for a metabolic-based therapy. Dr. Van Tine is studying possible future treatments for cancer / sarcoma patients using metabolic therapy. Click here for an explanation of his research.

Clinical Trials and Leiomyosarcoma

nlmsf-logo

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.

Sometimes We Need to Sweat the Small Stuff

I am responsible for his death. I never paid any attention to Black Gold’s lameness; he always black-gold-copyseemed to work out of it.

H. Webb, trainer, in the fiction book Black Gold

 

A hairline crack developed in the hoof wall of the Thoroughbred Black Gold as he raced through the spring of his three-year-old season. Despite the soreness this created, he won the 1924 Kentucky Derby. His trainer kept pushing the stallion anyway, and the jockey, Jaydee Mooney, stopped riding the lame horse in protest. The injury was left untreated and worsened. Eventually the brave racehorse broke that limb during a race, finishing on three legs. The beloved racehorse was put down.

I read his story, by Marguerite Henry, when I was in grade school. While very sad, I loved the tale. This year I found the same hardback book for $1 and brought it home to reread.

The parallels with my life were too obvious. I didn’t give much heed to the “benign” fibroid in my gut that grew unreasonably large. Two good friends found it frightening and urged me to get to a doctor as soon as possible.

By this time I was out of town. Through a long process, I finally decided to go to the emergency room. A small problem, like Black Gold’s hoof crack, left unattended, became deadly–a stage 4 uterine sarcoma.

It’s easy in our culture, with our “grin-and-bear-it,” “no pain, no gain” athletic mentality, to ignore our bodies’ warning signs. Yet our bodies give these signals because something is out of balance and needs our attention. Small problems, if attended to quickly, can stay small and be fixed, or at least controlled. Left on their own, they can become insurmountable issues.

Thriver Soup Ingredient

One fallout from a cancer diagnosis is that every headache, skin bump, or new pain brings up anxiety around the idea that it could be cancerous. If the symptom persists, it might be a good idea to get it checked by a doctor.

Sources:

https://en.wikipedia.org/wiki/File:Hof9.gif

Marguerite Henry, (Author), Wesley Dennis (Illustrator), Black Gold (Rand McNally, 1975)