Category Archives: It Takes a Village

Rebuilding after the fire

sunflowers at Notre Dame web
Sunflowers (symbol of sarcoma cancer) at Notre Dame, many facing north toward the cathedral instead of south toward the sun.

Do you feel like Notre Dame Cathedral, gutted by the fires of cancer treatments? Do you feel like a husk now, burned, weakened, and emptied?

That’s how I felt after my debulking surgery that took nine hours, followed by two years of harsh chemotherapy infusions. Those drugs burned through me and left me devastated and vulnerable.

Yet all was not lost for me, and neither is it for the cathedral. Now when I see pictures of the church’s interior, the altar and cross are still standing as if nothing had happened. The heart of the church is still intact.

My heart, my will to live, was still intact after two years of treatment. I did everything I could to survive, just as the firefighters did everything they could to salvage what they could of Our Lady of Paris.

Now this massive monument is at its most vulnerable and most in need. And so are we while dealing with cancer. Yet people are coming forward to rebuild her, as people came forward to help me rebuild my life, giving generously from their hearts and their time. I hope you are blessed with the same support. To turn down assistance is a disservice to ourselves and others, just as it would be a disservice to Notre Dame to not rebuild her.

Let her stand as a symbol of hope for you—that after the phoenix fire has burned its destructive path, we can rebuild and restore, perhaps winding up even healthier and better. This is my wish for you.

Remember the Rachels on Mother’s Day

Rachel weeps for her children, refusing to be comforted, for they are dead.

Matthew 2:16-18, New Living Translation

Rachel was an early biblical character who died giving birth to her second son. She was buried by the road to Bethlehem. Bethlehem would later become the birth location for a king, according to Matthew’s gospel. And Herod, the jealous and frightened ruler at the time, sent his soldiers to kill all the male infants and toddlers near Bethlehem to remove this new threat. One cannot imagine the kind of imperishable grief such an act would produce on a vulnerable population.

This story is part of the birth narrative of Jesus. When was the last time you heard a preacher talk about this trauma in connection with the nativity story? It seems to me that mothers who grieve their children appear easily overlooked.

The world is full of Rachels who weep disconsolately for their deceased children. My friend Joan just lost her daughter to diabetes.

With the current opioid epidemic, mothers who are cancer patients need to be wary. I was told in 2011 to “stay ahead of the pain,” and was sent home with a month’s supply of what I now realize were heroin pills. Recently I talked with a cancer survivor who also had leftover opioids and a teenaged son at home. I urged her to get a digital lockbox or return the pills to a pharmacy. Even if her son doesn’t find or use them, a friend of his might. Then the treacherous slide into heroin overdose begins.

If I ever doubt myself as a mother fighting for her children, all I have to do is look at this Mother’s Day card my deceased son made for me about ten years ago. I’m seen as firm with my words and my sword… with a kind smile on my face, all centered in a heart glowing with love.

I’m hardly alone. Even my son’s memorial garden was just visited again by Rachel’s weeping. A mother bird in the sweet gum tree had fought valiantly for her eggs, evidenced by the circle of feathers; but her efforts simply weren’t enough. The nest fell to the grass and her babies were hungrily consumed.

Mother’s Day is approaching. Ugh. For me, and for perhaps hundreds of thousands of mothers, this time on the calendar is a terrible reminder of broken hearts and empty arms. Despite all we do, sometimes we still lose our children. Some mothers lose their only children—I know two such women who lost theirs to heroin. I have heard of one woman who lost all three of her children to heroin overdoses. Losing your children is bad enough. Add on the stigma of death to drugs and you have an unfathomable nightmare.

I am most fortunate that one of my brothers will be here and we will spend the day making and eating delicious meals our mother made when we were growing up—a time of innocence. My younger son will get to indulge with us. (He loves to tell me there’s no food in my house.) Foods I typically now avoid, yet that give comfort and solace to an empty heart. Corn fritters, hamburger pie, cheesecake, springerle. I’ll still be weeping for my child, as I do nearly every day, yet with social support I also will have some consolation.

Thriver Soup Ingredient:

Mothers fight for their offspring, though not always successfully. Many of these mothers are single. It can be such a lonely time, especially with the isolation that can come from losing a child to drugs.

On Mother’s Day, please pray for or send positive intentions to the Rachels everywhere. Those who have suffered heavy losses need comfort and love—a kind word, a simple text, a card—something to let them know they are not entirely alone.

With the Loving Support of Friends

Our prime purpose in this life is to help others.

Dalai Lama

Thanks to generous support of my friends, Thriver Soup recently made its way to North Carolina and Florida. My heart is filled with gratitude.

Cincinnati Friends Meeting sent me off with their prayers. Brecka Burton and Amy Elliott Elberfeld provided me with presentation clothing for my talks “Thriving Beyond a Dark Night of the Soul” and “Power Up Your Spiritual Vibration with Energized Food” at the Kent Cook Nook in Davidson, NC.

Marnie Poirier, one of my Sacred Sisters of the Healing Hearts, provided a bed for the first three nights. Marnie’s place truly is her home, with her favorite quotes painted on the front of her house, a life-sized mermaid swimming in front of her porch, and a femail box next to her front door. She sent me off with bloodroot for my son’s memorial garden and stinging nettle for its nutritional properties.

Then I stayed with Madeline and John Wood, board members for the National Leiomyosarcoma Foundation, in their lovely condo. They had invited me to come when we met at the NLMSF National Conference where I spoke during 2015. Madeline did a lot of legwork publicizing my talk on “The ABCs of Creating Conditions for Healing” at Main Street Books in Davidson—I so appreciate her efforts, which produced some participants. We enjoyed delicious meals, a walk in a local park, and even a concert that evening at the local college.

Then I drove to West Palm Beach, Fla., to present on “Creating Conditions for Thriving” at the Annie Appleseed Conference. A generous gift from Women’s Way Ohio-Kentucky helped make this part of my journey possible.

On my way home I enjoyed a Spanish galleon treasure museum on a coastal island. I also set aside time to walk barefoot in the wet white sand along an empty beach washed by the powerful Atlantic surf.

To honor the happiest day of my life with my deceased son—21 years ago—I went to Disney Spring’s Rainforest Café in Orlando for lunch. The restaurant still features large, colorful aquariums, trumpeting life-sized animatronic elephants, and an overhead painting of a sky complete with large planet and meteoric lights. Every so often came the sounds of thunder and flashes of light, sans rain.

With focused attention, I could relive my son’s joyful two-year-old presence at the table… I am so grateful for the fulfillment he gave me as his mother and for the happy memories I carry inside. And I am so heartbroken about my terrible loss. Love never dies. It simply shifts.

The loving support of friends fulfilled their prime purpose. It also filled my trip with gratifying new memories and the fulfillment of my purpose sharing healing solutions and genuine hope with others.

I am grateful.

Books: More Than a Treasured Wealth

Books are the treasured wealth of the world and the fit inheritance of generations and nations.
Henry David Thoreau, Walden

It was a book lover’s dream. Only small wrapped tomes we had brought lay around the beautifully decorated tree.
About 15 children’s book writers and illustrators circled up. Before we picked out our packages, we were asked to give brief descriptions of what we currently were reading. How fun to hear people talk about the details of the writing skills of the authors—books they did, or did not, enjoy, and why.
Then we took turns selecting gifts. If we wanted to, on our individual turns, we could steal what someone else had already opened. In turn, someone could steal what we held in our laps.
Writers kept stealing a book about writing prompts and another about how to write for the screen. The most unique gift was an old book with the center cut out and a gift card and chocolate bar placed inside.
Interestingly, no one stole that gift, though the owner had squealed with delight when she opened it.
Clearly we were all bibliophiles.
My package contained a double delight, which I managed to bring home—How to Get Happily Published and Lemony Snicket Lump of Coal.
I’m grateful there are still booklovers among us—people who love the look and feel of a book, people who love to turn pages, people who know what makes for good writing.
Books helped save my life after I was diagnosed with highly aggressive end-stage cancer—especially Waking the Warrior Goddess by Christine Horner, M.D. They pointed to important studies that gave evidence for integrative practices I used to help my body return to health. They helped me understand what so-called solutions to avoid. And they helped me heal my life with insights and understanding.
The books I read during my journey back toward health are referenced in the back of Thriver Soup. For me, books are not only my treasured wealth, they also are life savers.

Thriver Soup Ingredient:
For a list of resources beyond Thriver Soup, see references used in the book on pp. 358-375.

Source:
Henry David Thoreau (July 12, 1817–May 6, 1862), American essayist and poet.

Unsung Hero

Tara L. Robinson, author of The Ultimate Risk (Hay House, April 2017) and publisher of Whole Living Journal, recently nominated me for one of Cancer Family Care’s 2017 Unsung Hero Patient Awards. The banquet was Tuesday, May 16, in Cincinnati, OH. Here is her nomination. Thank you, Tara!

 

Heidi is truly an inspiration beyond words. Not only is she an Unsung Hero because of her own personal growth work, but also because she has been determined to help others with what she learned from her experience.

And, let me tell you, what she learned was A LOT!

When Heidi was diagnosed with a rare Stage 4 cancer, she immediately put into action all of her advanced awareness of the mind-body-spirit connection. She turned over every single stone and healing became a full time job for her. She researched, overhauled her diet, maximized the effects of sound meditation, art therapy, dream interpretation, etc. She courageously chronicled the details her journey as it unfolded on her Caring Bridge webpage where friends and family remained on the edges of their seats waiting to see what Heidi discovered next.

She never faltered in her optimistic attitude and eventually made a most difficult, life-changing decision necessary to propel her into remission.

All of us who watched Heidi’s healing trek in awe could see the strong possibility that her online accounts would one day be perfect material for a book. She did, in fact, get right to work compiling all she had learned and experienced into an extensive resource for others on the healing journey. Her book, Thriver Soup, was traditionally published and has been helping patients and families around the world ever since.

Heidi and Tara at the awards banquet

I personally have been so inspired by Heidi’s story that I wrote about her in my own book, The Ultimate Risk (Hay House, April 2017) as I recounted why she was the recipient of the first Voices of Women award. Not only was she the first recipient, but she was actually the inspiration for the creation of this award that celebrates and acknowledges “outstanding achievement in personal growth and transformation.” This is the greatest act of service, because as we change ourselves, we change the world. I saw Heidi change the world as she bravely changed herself. The VOW award was created to honor remarkable women who have “risen from the ashes,” or have simply displayed great courage in excavating their inner lives, thereby changing themselves and changing the world…Heidi is the epitome of this award.

Heidi continued to suffer the worst of life’s challenges when her son suddenly passed away. However, her spirit is not to be defeated. She once again drew on the strength and faith she had cultivated during her cancer journey to not only survive, but thrive through even this tragedy.

Heidi is definitely an Unsung Hero and deserves to be honored as such. Our world is a better place because of Heidi Bright.

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.

 

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.

Thriver Soup Thursday–Save Lives by Raising Awareness

sarcoma ribbon copyWe must recognize that the suffering of one person or one nation is the suffering of humanity. That the happiness of one person or nation is the happiness of humanity.

The Dalai Lama

Some diseases receive enormous amounts of media attention. Others are sidelined or not even recognized by most people. I had never heard the word “sarcoma” when suddenly I was thrust into the world of a terminal diagnosis with a few months to live.

What if I had known that my symptoms indicated severe danger, when I thought I was just having perimenopausal symptoms? How many lives can be saved by raising awareness so others can avoid the devastation I was fortunate enough to have lived through?

I had an incredibly rare sarcoma—and only one in 100 cancer diagnoses is for sarcoma, which is cancer of the connective tissues. The Sarcoma Alliance and Sarcoma Foundation of America want to raise awareness about this disease to help others recognize it and get treatment fast to save lives.

These foundations are asking the White House to name July as Sarcoma Awareness Month. At least 100,000 petition signatures are required by July 29, 2016 for the White House to consider this initiative.

Please sign the petition and share it with others.

Alongside this petition is a movement to name July 15 as LMS Awareness Day. LMS is short for leiomyosarcoma, a rare and deadly cancer. Ask your state legislators to pass resolutions similar to one passed in Michigan (email me and I’ll send the sample to you). Then ask your federal legislators to support this at the federal level.

The suffering of each individual with a rare disease does affect us all at some level. Advocate for others, and they will probably advocate for you as well.

Thriver Soup Ingredient

Here is a link to contact information when advocating to your elected officials: https://www.usa.gov/elected-officials

Sources:

www.ineedmotivation.com/blog/2008/04/20-wise-quotes-from-the-dalai-lama/

http://www.shutterstock.com/pic.mhtml?utm_campaign=Bobek%20Ltd&utm_source=39150&utm_medium=Affiliate&tpl=39150-42119&id=163453907&irgwc=1

Kindly Christmas

Those who act kindly in this world will have kindness.

Qur’an 39.10

I was in need of much kindness.

I was a single mother whose firstborn had recently passed away and whose only other child was spending Christmas with his father.

Dread filled my heart when I thought about the upcoming holiday. Christmas 2014 had seemed horrible enough. My 19-year-old had purchased a one-way ticket to hell years earlier–turning to substance abuse, most likely in part because of my end-stage cancer diagnosis in 2009–and he was dragging us along. We spent three long hours in a drug rehab facility. A thick blanket of pain hung heavily around each person as we ate, played bingo, and strained to make small talk. Anger, hurt, sorrow, fear, and powerlessness pervaded my being.

My son ended up doing what most heroin addicts do—he overdosed in June. Then a friend of his overdosed before Thanksgiving, bringing another cascade of grief.

What to do for Christmas this year? I wanted to avoid sobbing into a cup of tea all day. Lovely friends invited me to join them, and I am grateful, but it still would have been a horrible holiday. I knew I needed to get completely away from the memories for awhile.

Heidi by tree 1 webThen I had a conversation with one of my sisters-in-law, followed by an invitation to Seattle for the holidays.

It was perfect. I left a week before Christmas and stayed well into the new year to avoid emotional triggers. They piled my lap with more gifts than I have received in decades. My sister-in-law cooked amazing meals and showed me the treasures she had been collecting for a museum she plans to open in Astoria, Oregon, in June. I also disappeared into my deceased parents’ past, scanning hundreds of old family slides and transcribing German letters.

My brother and his family acted with great kindness, and I am so grateful. I actually had a really nice Christmas.

 

Thriver Soup Ingredient:

If you know someone who has suffered a great loss, your kindness is deeply appreciated.