Tag Archives: sarcoma

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.

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.

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.

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.

It’s Official: 5 Years Clean

Purify me with hyssop, and I shall be clean; Wash me, and I shall be whiter than snow.

Photo by Judy Peace
Photo by Judy Peace

Psalm 51:7, New American Standard Bible

Hyssop, as used in this verse, probably refers to herbs, such as oregano or thyme, used by the early Israelites to purify those with skin disorders and as part of cleansing rituals.

My disorder appears to be purified, cleansed, washed away. Today my nurse practitioner, Michele, confirmed I am now five years clean, five years free of evidence of disease, and five years clear of all medical treatment.

I am THRILLED!

Filled with gratitude and joy, I went to the nearby Cathedral Basilica of the Assumption in Covington, Ky., to light a ritual candle and give thanks. Mother Mary holds a reverential place in this hallowed hall, and I feel devotion toward her for many reasons. I entered, wide-eyed at the majesty of dozens of intricately painted stained-glass windows. The stunning primary window, one of the largest in the world, depicts the crowning of Mary in heaven.

After circling and ogling with my friend Judy, I went to Mary’s alcove near the front of the quiet cathedral and saw, to my great delight, real sunflowers on her altar. Sunflowers are the symbol for sarcomas, which are cancers of the connective tissues. I had been diagnosed seven years ago with a sarcoma. The flowers provided the perfect symbol for completing the experience.

I lit a candle, kneeled on the bench, said a Hail Mary, and expressed my deep gratitude for five clear years. “Thank You for purifying me; I AM clean.”

Thriver Soup Ingredient:

If you are longing for a clean bill of health, the above verse can be modified as an affirmation of faith in a positive outcome and as a prayer request of the Divine that can be repeated throughout the day: When you take your shower, you can say, “Purify my body with this shower, and I shall be clean…” When you drink your green smoothie, you can say, “Purify my cells with these greens, and I shall be clean…” When you are receiving chemotherapy, you can say, “Purify my organs with these medicines, and I shall be clean…”

Source:

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

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

Mary Celebrates Sarcoma

​Praise the Lord, my soul; all my inmost being, praise His holy name.

Psalm 103: 1, Christian Bible, New International Version

 

Mary Connolly shares from her heart her journey through a devastating cancer diagnosis to celebrating sarcoma with a thankful heart.

At age 21, while still a college student, synovial sarcoma was found in her leg. Meanwhile, her sister was undergoing gamma knife surgery for a brain tumor.

Mary had surgery that left her unable to lift her right foot upward. She had to get her car modified with a left foot pedal. Away went all her beautiful, beloved shoes. That was just one of numerous challenges she faced, including in her relationships with family, friends, and potential boyfriends.

Mary turned these challenges into opportunities. Now when people ask about her foot brace, she uses that as an opening to raise awareness about sarcoma.

Mary’s faith played a huge role in her healing journey. Her book, Celebrate Sarcoma, is filled with her prayers and Bible verses reflecting her struggles with her understanding of God.

Eventually she came through to the other side of depression. Mary wrote, “I decided that I wanted to do something meaningful with my life. Something that would not just benefit my family and close friends, but an even wider circle of people. I decided that I could be nothing but thankful for how the cancer brought about positive change in my life…. God has blessed me with a maturity and insight that many don’t have even after experiencing successful careers. For this I am grateful.”

Reflecting back on her experience, she writes, “As much as I have despised cancer for the havoc it has wreaked on me, I have reached a place where I can’t imagine my life without this experience and the journey on which it has set me. I am grateful for the lessons I have learned, the relationships I have built, the experiences I have had—some that have brought tears of sadness or joy, others that have brought laughter or mourning.”

Through it all, Mary has reached a place where she can celebrate sarcoma. She looks forward to working with young adult cancer survivors.

 

Thriver Soup Ingredient:

The sale of Mary’s book will benefit orthopedic cancer research at The James Cancer Hospital and Solove Research Institute in Columbus, Ohio. The book is available athttp://www.amazon.com/Celebrate-Sarcoma-Mary-Connolly-ebook/dp/B00Q9X5EHG/ref=sr_1_1?ie=UTF8&qid=1449889641&sr=8-1&keywords=celebrate+sarcoma .

Thriver Soup Article: Mary Celebrates Sarcoma, by Heidi Bright

Patricia’s Journey with the Purple Dragon

Once the soul awakens, the search begins and you can never go back.

John O’Donohue

The soul of Patricia Moreira-Cali has been stirred into full life by a purple dragon known as leiomyosarcoma. It is a rare and aggressive form of cancer, and for women it usually starts in the uterus.

On April 23, 2013, Patricia’s uterine “fibroids” were found to be cancerous, and she began a perilous journey that continues today. She bravely talks about her first year after the diagnosis in her book, My Journey with the Purple Dragon. She goes into vulnerable detail about her emotional experiences and her search for a cure.

“Friends and family are not with you at all times of the day and night,” she wrote. “You are alone when the tears seem endless, when the sorrow is so painful that it’s hard to breathe, when the grief cuts through your core, when you long for the freedom to feel healthy, and when you are introduced to death, and somehow you befriend it.”

She experiments with a variety of complementary treatments while doing conventional chemotherapy. “I have no doubt that the treatment of cancer, and many other chronic diseases, requires a holistic approach,” she wrote. Among her choices were to visit John of God in Brazil, and she describes her experiences there.

Gradually, the reader witnesses Patricia’s inner transformation. “A new me is emerging, growing and flourishing, somehow,” she writes.

When she reaches the end of her first year of treatment, she finds an enviable place of serenity. “I have detached from much illusion, and I feel mostly at peace within.”

The book is self-published and could benefit from professional editing, yet overall it is a moving story of courage and a roadmap for others on the journey with cancer.

 

Thriver Soup Ingredient:

Profits from Patricia’s book sales go to leiomyosarcoma research and to support a poor child with cancer through her non-profit Helping Children Heal (HCH). Her book can be ordered at http://www.purpledragonjourney.com/order-now/

 

Sources:

Patricia Moreira-Cali, My Journey with the Purple Dragon: Living with a Rare and Aggressive Cancer. Bloomington, IN: Balboa Press, 2014:78,100, 105.

Thriver Soup Article: Patricia’s Journey with the Purple Dragon by Heidi Bright