Tag Archives: sarcoma

Free Dedicated Helpline Coming Sept. 1 for Leiomyosarcoma Guidance

Conventional Methods, Resources, ,

If you or someone you love has Leiomyosarcoma, you will soon be able to call a new helpline offering free counseling support. The designated phone number will go live Sept. 1, 2018, and is a collaborative effort between the National LeioMyoSarcoma Foundation and the Cancer Support Community. Operating hours will be Monday through Friday, 9 a.m. to 9 p.m. Eastern Standard Time. The phone number will be announced by Sept. 1. International rates apply.

Trained CSC professionals and counselors will provide information, counseling, and navigation services in both English and Spanish at no cost to callers.

Medical advice is not provided, and must be directed back to the patient’s oncology care team. Information provided on clinical trials and genomic/genetic testing must always be further discussed with your oncologist/oncology care team.

Cancer Support Helpline services include, but are not limited to:

  • Connecting callers to local or national resources, transportation services and other local programs where patients live, providing direct coordination support to patients
  • Short-term cancer counseling and emotional assistance
  • Treatment decision planning in support of the oncological care team
  • Financial navigation and counseling regarding the costs of cancer and its treatments
  • Specialized information on finances / financial planning guidance
  • Clinical trials navigation/information and search assistance
  • Genetic/genomic information assistance
  • Access to an online distress screening program, CancerSupportSource®
  • General information about the Cancer Support Community

For questions, please contact Annie Achee at annieachee@aol.com.

NLSMF also has created a new website about life changes: https://nlmsflifechange.wordpress.com/

Wrestling a 24-pound Turkey

Let Food be Your Medicine, , ,

“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.

New Videos: ABCs of Creating Conditions for Healing

Complementary Therapies, Conventional Methods, Let Food be Your Medicine, Mapping the Emotions, Mending the Mind, Minding the Body, Resources, Soaring with Spirit, , , , , , ,

Create conditions for radical Healing in your life. Find simple solutions by updating your attitudes, behaviors, and making major life choices to influence cancer and other dis-ease outcomes. If you have cancer, ALS, Parkinson’s, or other “incurable” dis-eases, find relief and personal healing by using these concepts.

I was told to get my affairs in order after two years of conventional treatment for highly aggressive end-stage sarcoma. Yet against all odds, I have enjoyed radical remission since 2011, free of evidence of cancer and free of cancer treatment. Find out what I discovered about changing attitudes, behaviors, and making major life choices that can assist you with turning the corner and thriving.

This short series comes in 4 brief parts and is posted on youtube.

Part 1: How I healed from highly aggressive end-stage cancer.

Part 2: How you can change attitudes to stop being a victim, stop worrying, and let go of resentments.

Part 3: How you can change behaviors such as knowing your nutritional stats and improving it; a sample spiritual practice that gets you out of your head; and how to manage difficult emotions.

Part 4: Putting it together with making major life choices to heal your life, which can help your body rebalance and heal itself.

Please enjoy and share, and let me know about speaking engagements where I can share this important message.

Many thanks to Jim Gray, with Gray Solutions, for creating this new video for Thriver Soup!

It is better to have loved and lost, on Mother’s Day

Night of Mourning, , , , ,

… O evil day! if I were sullen / While Earth herself is adorning / This sweet May-morning; / And the children are culling / On every side / In a thousand valleys far and wide / Fresh flowers; while the sun shines warm, / And the babe leaps up on his mother’s arm:— / I hear, I hear, with joy I hear!

“Ode on Intimations of Immortality,” Recollections of Early Childhood by William Wordsworth (1770 – 1850)

 

Flowers from TristanMy heart melted whenever my son Brennan brought me flowers he had culled.

When he was nearly three, he joyfully handed me discarded artificial blossoms. He asked me to smell them, so I did.

I asked, “What do they smell like to you?”

He plunged his face into the bouquet and breathed in. He looked at me with all seriousness. “Cheerios.”

For me, nothing has been more wondrous than raising my boys. Even with the exhaustion, the frustration, the terror, the powerlessness. The sorrow.

My motherhood began later in my life than for most mothers. A week after the due date, an ultrasound indicated my firstborn was twelve pounds.

Um, he wasn’t coming out naturally, even though I had a great midwife.

Sighing, I scheduled a C-section.

I had another week to wait. I was reminded of the words of Jesus when he broke bread with his disciples for the final time: This is my body which is broken down for you; This is my blood which is shared with you. Greater love has no one than this, than one lay down her life for her friends.

Or for one.

A baby boy named Brennan.

“Congratulations,” my doctor said after the surgery. “You’ve given birth to a two-month-old.” Brennan looked enormous beside the normal-sized babies.

I loved this precious new being with every breath. I held him at every opportunity. I sang to him, talked to him, read to him before we even left the hospital.

I wrote in my journal: “When I look at this baby, I don’t see a child; I see an extension of myself. I feel a bond that is stronger than death. It really hurts my soul to see him cry. I love being able to nurse him—to feed him with living water from my innermost being. To nourish and sustain him with my body. To give to him from my life’s blood, for it takes blood to make milk.

“Now I know what a mother’s love is. It has nothing to do with how the child turns out or how smart or gifted he is. All that matters is his happiness.”

When Brennan was a week old, I held him in my arms while I rocked. I cried for half an hour—a slow, silent, teary cry. I never wanted him to be hurt, so I prayed for his protection.

How prophetic. He could not find happiness for himself. He did not have the protection he needed.

It is said it’s better to have loved and lost than to never have loved. At the National Leiomyosarcoma Foundation national conference in 2015 I spoke briefly about losing Brennan two months earlier. A woman came up to me, her eyes brimming with tears, her voice tremulous. She had lost her daughter a decade earlier to leiomyosarcoma. The pain of losing a child can come up anytime, anywhere, and produce copious tears. Time does not erase the agony. Would she trade this desolation for never having her beloved daughter? Never. No, never. I know that love and am grateful for the 19 years I shared with Brennan.

And the bond of love continues beyond the grave. It is deathless. (And as I write this, the song “We’re Walking in the Air” randomly plays on Pandora—it’s one of the songs played during Brennan’s memorial service. He is with me, even now… His essence is deathless. His presence is present. His love lingers.)

Even without this precious child still embodied to celebrate Mother’s Day with, I would be remiss to be sullen. I loved being his mother for 19 years; even in the darkest hours, I loved him with all my heart. He knew. And he still does.

So I will celebrate with my living son, my second-born, who soon will have lived longer than his older brother. He delights me with his humor, his insights, his love. He is the treasure of my life.

I have much to celebrate.

Thriver Soup Ingredient:

Please share this post with mothers who have lost their children. Thank you.

Mirror, Mirror, on the Wall, Who is the Rarest One of All?

About, Events, , ,

There are about 7,000 rare human diseases. How rare is rare? In the United States, it’s when a disease affects fewer than 200,000 people.
     Um, that doesn’t seem quite so rare to me. However, diseases falling into this category tend not to get research funding. Without research, conventional treatment options are few or nonexistent. That is an enormous issue for 30 million people in the United States.
     Just think of what that means for those with truly rare diseases. No one is going to fund research when only a small handful of people have a particular disease.
     When I speak of a small handful, I am referring, for example, to those with undifferentiated endometrial #sarcoma. I have only heard of three women besides myself who had it. I’d say that’s pretty dang rare. And mine owned the additional prefix “highly.” Read: “the most deadly.”
     My tumor slides earned the privilege of a trip to an international conference.
     Not the honor I wanted.
     #RareDiseaseDay was Feb. 28. This short video clip is about my experience with having a rare disease.
     Cincinnati’s TV station #WLWT channel 5 came to my home to do a segment on healing from a rare disease when conventional treatment runs out of options.
Watch the 1-minute show here.
     Note that Thriver Soup is not my story. It’s a series of more than 250 practical tips for healing. People with everything from anxiety attacks to Parkinson’s are adopting and benefiting from the useful ideas they’re finding in its pages.
     Healing from rare diseases, even terminal situations, is possible. I am living proof.

     How has Thriver Soup changed your life? I’d love to hear.

Sharing my Story with the Northwest Sarcoma Foundation

About, Complementary Therapies, Conventional Methods, Resources, , ,

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.

Achieving the Best Sarcoma Outcomes

Conventional Methods, , ,

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.

Beyond Immunotherapy: Metabolic Treatment for Cancer a Possible Future Option

Conventional Methods, Resources, , , , ,

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.