“She is clothed with strength and dignity. She speaks with wisdom and faithful
instruction is on her tongue.” Proverbs
31: 25a, 26
Devastating News
Seven years ago, 36-year-old Heather Von St. James was at
the prime of her life when she gave birth to a beautiful baby girl named
Lily. She was looking forward to the
cherished memories her family would share in raising precious Lily—all the milestones
and the joys of motherhood. Three and a
half months later, Heather’s plans and dreams were altered with the devastating
diagnosis of a rare form of cancer called Mesothelioma. How could this happen? Heather was never directly exposed to
asbestos, a deadly toxin that causes this type of cancer, however her father
unknowingly brought it home from work on his clothes.
With a grim prognosis of fifteen months to live and little
knowledge about the disease, Heather faced a myriad of emotions including
shock, disbelief, anger, and overwhelming fear. The more Heather researched Mesothelioma, the more hopeless the
situation seemed. There appeared to be
very limited options for her to fight the terminal cancer.
The Battle Begins
When Heather looked into the eyes of her sweet baby, she decided
that dying was not an option. “I
knew I had to be around and get to know who she would be. Besides, my husband couldn’t teach her to
put on make-up and do her hair. I HAD
to beat it.”
Fortunately, Heather received excellent medical care and was
referred to the world’s leading specialist on the disease. She had a radical surgery called an “Extra
Pleural Pneumonectomy.” This
procedure involved the removal of her lung, the pleura where the cancer was
located, half of her diaphragm, the lining of her heart (pericardium), and her
sixth rib. The diaphragm and
pericardium were replaced with a surgical gore-tex mesh. During the surgery, Heather had
inter-operative heated chemo—a procedure where chemo solution is heated to 140
degrees Fahrenheit and pumped into the chest cavity, swirled around for an
hour, and then pumped back out. The
theory behind this procedure is the chemo comes in direct contact with the
affected cells, and it is a much stronger solution than what could be
administered intravenously. After a
three-month recovery, Heather had four rounds of chemotherapy followed by
thirty sessions of radiation. The effects of the chemo and radiation were traumatizing. Heather describes chemotherapy as a roller coaster of ups and
downs and the radiation therapy as feeling like a “slow descent into hell.” She had days during her therapies that she
could not remember anything. What she could remember was often hazy.
Heather looked into her daughter's eyes and knew she had to beat cancer
Survivor
The battle was extensive and agonizing. Words can’t even begin to describe what
Heather endured, however she refused to give up hope. The road to victory was costly, but the outcome was worth
it. “Although it was the worst thing
that has ever happened to me, it was at the same time the best. It totally changed my life. Mesothelioma gave me a new freedom of
sorts. It gave me the realization that
I’m a lot stronger than I thought I was.
I learned to live in the moment by savoring the immediate and not
worrying so much about things we have no control over.”
A few years after Heather’s cancer treatments were
completed, she discovered a support network through the Mesothelioma Applied
Research Foundation. It was reassuring
for her to know that she was not alone as she came in contact with other
survivors who understood what she was going through. Heather then became involved with this community of survivors and
activists. “My friend Ted says,
‘Mesothelioma is the crappiest way to meet the best people’, and he couldn’t be
more right.”
Heather’s involvement in the Mesothelioma community became
the foundation of her vision and purpose.
As a cancer survivor and an activist, she realized that her experience
opened up an opportunity for reaching out to educate and help others who are
suffering from this dreadful disease.
A Voice for Hope
When Heather was diagnosed with Mesothelioma, there weren’t
stories of hope readily available to her.
She did not have the access and exposure to social media that we have
today. Seven years ago, Heather didn’t
know anyone who had the disease, however she is now determined to resolve this
problem for existing cancer victims. “Hope
can mean the difference between deciding to fight and giving up. If I can give someone hope and inspire them
on their battle, then I’m doing the right thing.”
“Dying to be Heard” is Heather’s campaign as she
illustrates the devastating effects of Mesothelioma on its victims. Her objective is to become their voice for
hope through education, advocacy, and support.
Heather’s mission is simple.
She is doing everything she can to bring to light this disease and what
it does. “We associate the color
pink with breast cancer. Everyone is
aware of breast cancer because of campaigns, treatments, and improved life
expectancy. Until people are made aware,
nothing will change. Imagine the change
that would happen if the amount of people who are aware of breast cancer also
knew about Mesothelioma. That is my
passion and why I do what I do.”
Heather with her husband, Cam, and their daughter, Lily
The Truth about Mesothelioma
Mesothelioma is a rare form of cancer caused by
exposure to the insidious fiber asbestos that has been used in many products
over the last century. This deadly
toxin is not banned in the United States and is widely used today. Mesothelioma has a 10-50 year latency
period. Once exposed to asbestos it
lays in your system, silently producing the cancer. Mesothelioma is very difficult to diagnose. Only about 2000-3000 individuals are
diagnosed annually in comparison to the 85000 who are diagnosed with breast
cancer. Unfortunately, funding for
Mesothelioma research has been almost non-existent.
Prevention is the only known cure. You can prevent exposure to asbestos by educating yourself about
the toxin and the products or materials it can be found in. You should use extreme caution when completing
any home renovations if your house was built before 1978. Heather shares that there is improved
medical care for treating the disease, “Treatments have come a long way in
the last 7 years. Surgery is still the
most effective. There are many promising
clinical trials happening right now as well.”
The Mesothelioma Applied Research Foundation has
declared September 26 as national Mesothelioma Awareness Day. This day has profound meaning for Heather as
she strives to raise awareness. For
more information about Heather’s story, facts about the disease, and Heather’s
mission visit her blog at: http://www.huffingtonpost.com/heather-von-st-james/
To learn more about Heather's mission to raise awareness about Mesothelioma visit the following site at: https://www.mesothelioma.com/heather/awareness/#.WMd0xfnyu00
Resources
For additional information about Mesothelioma, you can
visit the following websites:
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