Tag Archives: sarcoma blog

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

… 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 Tristan 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 Tristan.

“Congratulations,” my doctor said after the surgery. “You’ve given birth to a two-month-old.” Tristan 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 Tristan 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 Tristan 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 Tristan.

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 Tristan’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.

This Surprising Prescription is Free

For ye shall go out with joy, And be led forth with peace; The mountains and the hills shall

forest bathing
forest bathing

break forth before you into singing, And all the trees of the field shall clap their hands.

Isaiah 55:12, JPS Tanakh 1917

 

Have you ever walked into a forest and felt bathed in peace?

It’s not your imagination. It’s real.

The Japanese have a phrase for taking in the healing properties of the woods: shinrin-yoku, or “forest bathing.”

Studies “show that forest environments could lower concentrations of cortisol, lower pulse rate, lower blood pressure, increase parasympathetic nerve activity, and lower sympathetic nerve activity compared with city settings.”

Dr. Johanna Budwig, a biochemist, wrote that walking through a forest can recharge our batteries.

Even simply looking out a window at green plants is healing. Post-surgical patients who could look out on trees and grass got out of the hospital sooner, had fewer complications, and took fewer pain medications than those without such views.

Other benefits include

  • Improved sleep and mood
  • Increased energy levels and ability to focus
  • Decreased anxiety, depression, anger, confusion, and fatigue.

In other words, it’s not just relaxing to be in a forest. It’s healing, and here’s why: you are literally being showered with essential oils that prevent the growth of attacking organisms.

Like cancer.

Plants are busy sending out chemical signals called phytoncides that ward off insects and help fight bacterial and fungal disease. When we breathe in these phytoncides, our bodies’ immune systems create more natural killer white blood cells that go after tumors and viruses.

So maybe take your next “bath” among trees and imagine they are clapping their hands, showering their joy and healing balm upon you.

Thriver Soup Ingredient:

Find ways to get out into the woods, or at least get a view of plant life, as much as possible.

Sources:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793346/

http://www.dec.ny.gov/lands/90720.html

https://en.wikipedia.org/wiki/Phytoncide

https://en.wikipedia.org/wiki/Forest_bathing

http://www.hphpcentral.com/wp-content/uploads/2010/09/5000-paper-by-Qing-Li2-2.pdf

Budwig, Johanna. Flax Oil as a True Aid Against Arthritis, Heart Infarction, Cancer and Other Diseases. Apple Publishing; 3rd edition (December 1, 1994), p. 50.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793341/

Ulrich, R. S. (1984). View through a window may influence recovery from surgeryScience. 224:420-422.

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

 

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

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

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.

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.

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.

Hidden Voices: Biblical Women and Our Christian Heritage
Hidden Voices: Biblical Women and Our Christian Heritage

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.

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.