Wedding to Cam April 1999
Pregnant with Lily Summer 2005
Lily’s Birth August 2005
Diagnosis November 21, 2005
Surgery February 2, 2006
Today, I am a eight-year mesothelioma cancer survivor and have made
it my mission to help other mesothelioma victims around the globe. I
share my personal story to help spread hope and awareness for others
going through this, in hopes that one day no one else will have to. HVSJ
About Heather
- Wife of Cameron Von St. James and mother to Lily Rose
- Pleural mesothelioma survivor
- Treated by Dr. David Sugarbaker at Brigham and Women’s Hospital in Boston
- Self proclaimed “Poster child for hope after mesothelioma” for those suffering from asbestos disease
- Continues to live with strong faith, abundant gratitude and an unbeatable will to live each day
Dying to be Heard is a statement that perfectly illustrates what is happening to mesothelioma victims.Each year, 3,000 new people are diagnosed with mesothelioma cancer. Of those 3,000 victims, only a small percentage will live to celebrate 5 years of survival. Most live a mere 10 months past diagnosis and, during those 10 arduous months, they are dying to have their voices heard—by asbestos companies, medical research organizations, potential victims, and those who don’t know about this disease. Mesothelioma is a completely preventable disease, yet asbestos is still not banned in the US.
The
thing about cancer that no one tells you is that you are thrust into a
world not only of endless doctor appointments, countless labs, CT scans,
being poked literally hundreds of times until you’re bruised up and
down your arms, but also into a world of some of the most amazing,
resilient and inspiring people you will ever know. There is also the
really, really hard part very few people talk about– the fact that a lot
of those amazing people don’t make it. I’ve had to say good-bye to more
people in the last 7 years than I ever
When
I was in the hospital in Boston recovering from my extrapleural
pneumonectomy surgery, I remember looking at Cameron, my husband, and
saying to him, “when we get through all of this, we are getting a
motorcycle.” I think he started dreaming about the perfect bike that
night.FACTs from a Survivor: How the FACT Act Affects Mesothelioma Victims
I
was speaking with a friend of mine recently about writing, as she’s
writing a urban fantasy short story, and the subject of blood types came
up. You see, I always remember my blood type, B Positive, because
that’s how I always strive to be. Unfortunately, sometimes I fall short
of my goal. Today is one of those times
“For
I know the plans I have for you,” declares the Lord, “plans to prosper
you and not to harm you, plans to give you hope and a future.”Jeremiah
29:11This scripture was on a card sent to me by a friend shortly after he found out I had cancer. When I opened the card, and read those words, I sobbed. I sobbed because it was EXACTLY what I needed to read and needed to know, that I would be ok. It was those words that got me through some very scary times in these last 7 years. Those words were, and still are, my lifeline.
“Courage is resistance to fear, mastery of fear, not absence of fear.”-Mark TwainI hear it often from people, how brave I am and how much courage I have. Sometimes I just have to laugh, because, going through what I’ve been through with my mesothelioma battle, I don’t feel very brave. At times, the fear was so overwhelming, all I could do was cry out to God to help me. I would love to say that through the last 7 years, I’ve learned to conquer my fears. After all, Lungleavin Day, our celebration of the anniversary of my extrapleural pneumonectomy surgery, is all about overcoming fears. But I still have my moments, more often than I would like to admit. I have the usual fears creep in, my “scanxiety” I’ve blogged about before, little pangs of fear before I fly, but the biggest fear I struggle with is the fear of something happening to my daughter. This is something that has plagued me since she was born.
Scanxiety:
Noun [skan-zi-etee]: Uneasiness waiting for ones scans after cancer
treatment. ie: I get Scanxiety the week or so before I go to Boston for
my check ups.Awareness Is Key
I’ve
said it before, my mesothelioma cancer was all at once the worst thing
and best thing that has ever happened to me. Getting the diagnoses when
my baby was only 3 1/2 months old was certainly not in our plans. I
planned on being a working mom, but this cancer changed all that. I get
to be a stay at home mom, I get volunteer with my daughter’s school and
help out when I can. I actually enjoy it far more than I thought I
would. When I worked in the salon, I used to joke that they would have
to pry the shears out of my cold, dead hand before I ever quit, but I
guess someone had other plans for me. Some days I do miss going to work,
but all I have to do is sit and read some of the comments on my blog or
Facebook page to know that I am doing the right thing– I’m making a
real difference in people’s lives.
Knowing that something was seriously wrong with me, I called our
family physician to help me find an answer to the question that was
haunting me; could I really have mesothelioma cancer?
I spent the evening making phone calls to family, and friends. My
parents live over 600 miles away, and upon hearing the news, made plans
to be out here the next day. It’s at least a 10-hour drive, but they
needed to be here. I needed them to be here. No matter how old you are,
it seems like you always want your mom and dad when you are sick. It was
a comfort to know they would be here.
It was December 5, 2005, we were on a plane to Boston. We had an
appointment set for the following day to see Dr. David Sugarbaker and
the International Mesothelioma program team at Brigham and Women’s
Hospital. We were scheduled to be at the hospital early in the morning
for an orientation with the team, followed by a slew of tests in the
afternoon.
Our baby’s first Christmas, 2005- It was supposed to be memorable,
and it was, but for all the wrong reasons. We did everything we usually
do; Christmas Eve with my husbands family, but despite the festive air
of the season, no one could ignore the dark cloud hanging over us. To
this day, when I decorate my Christmas tree and I put the “Baby’s First
Christmas” ornament on the tree, I do so with a bittersweet feeling.
My surgery was scheduled for Thursday, February 2nd, 2006, at 7:30 a.m. Cameron and I arrived in Boston on the 31st of January to get settled in and get all the pre-op testing done. All of that was scheduled on Feb 1st. It was a whirlwind day.
Day 3 in ICU- sitting in a chair!The entire 11th floor of Brigham and Women’s Hospital in Boston is dedicated to thoracic patients. They have lung transplant patients, collapsed lung patients, esophageal cancer patients and, of course, extrapleural pneumonectomy or EPP patients like myself. The nurses and residents are highly skilled and know exactly what to do to care for us.
Shannon’s House– or “Cancer Camp”.“Cancer Camp” is what my sister affectionately refers to the days we spent at Shannon’s House that cold February in 2006. We had a room on the first floor toward the back. It was a small room with two mostly comfortable twin beds, a huge closet and a private bathroom. I had packed a fleece blanket that my mom had made for me and brought it with to use in the hospital, and I was so glad to have it with me while I was at the house. It was a little piece of home that I had while healing. She had also made my sister one, and so we both had our blankets from mom with us for “Cancer Camp”
Being a parent, my biggest fear is my child getting sick. I think
that is a constant fear, regardless of how old your child is. So when I
was diagnosed with mesothelioma, my parents had to face that fear. I was
their child, their baby, and now I was fighting for my life. Then, with
me being a new mom, they had to take over my role as a parent while I
was in Boston for my surgery. They were much more than Grandma and
Grandpa—they were, in every sense of the word, parents to her in our
absence.
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