caption - title

The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14
Showing posts with label Mesothelioma Awareness. Show all posts
Showing posts with label Mesothelioma Awareness. Show all posts

Saturday, November 26, 2016

Mesothelioma Awareness - Katherine Key's story

I'm sorry I haven't posted more recently.  Things are just difficult and busy at home.   Tabby has had some good days though.  Solomon, though better overall, had a stomach ache and threw up several times yesterday.  Hunter's beloved hen Kelly was killed last Sunday.  He is still sad and also is really struggling with a lot of worries about Tabby.  Tis the season to be ... ????

I've been making it a game for myself to think of things to be thankful for.  I was also pleased to make my 745th entry into my thankful journal this morning.  One day the light will shine again.  Though honestly it may be awhile.  Even in normal years, in the weeks approaching December 15th - Lilly's angelversary - are not my favorite days.

Well I suppose that was not a cheery beginning for a blog post.  However, my actual blog post IS cheerful.  It is a beautiful story of healing for a woman named Katherine.  Katherine contacted me earlier this month and wondered if I would share her story of healing from Mesothelioma.  I have blogged about this cancer caused by asbestos once before here.  I have been impressed with the initiative that survivors of this cancer take in spreading awareness.  (I have been contacted by a couple other survivors, through my blog, over the years.)  I have been thinking that those of us in the Trisomy 18 world might could learn some awareness spreading tips from these people.

Now - here is Katherine's story, in her own words:

Katherine Keys has been fighting Mesothelioma for 9 years. If you don’t know, mesothelioma is a cancer caused by asbestos exposure. When she was first diagnosed doctors told her she had less than 2 years. Katherine refused to believe her time was limited and instead decided to fight the cancer. Katherine is convinced that it was her positive attitude and determination to win that has allowed her to survive against the odds. 
At first Katherine thought she had the flu. She was prescribed medication and painkillers but the pain persisted. When the pain was too much to take, Katherine went to the ER, it was there that she discovered she had cancer. Katherine was 49 years old when she was diagnosed with Stage 1 pleural Mesothelioma. 
For treatment, Katherine had her right lung and the lining of the lung removed, a major surgical procedure called extrapleural pneumonectomy (EPP). After several months of recovery, Katherine began radiation treatments. She had treatments five times per week for several months. Although she had been scheduled for chemotherapy treatments, she was relieved to learn that she didn’t have to have them. 
Upon completing her treatments, Katherine attended her regularly scheduled follow-up appointments. At first, they were monthly, then every two months, three months, six months…and now annually. Her follow-up appointments typically consistent of blood tests, a PET scan, x-rays and other tests to confirm that she is still cancer-free. 
Today, Katherine feels blessed to be able to spend time with her family and share her story with other people living with mesothelioma. While she has been through a lot and is still challenged by physical pain and limitations after having a lung removed, Katherine sees every day as a gift. She hopes her story brings resilience and positivity to people living with mesothelioma.


Thank you again Katherine, for sharing your story! I love that you see every day as a gift. :) 

UPDATE: I asked Katherine how she was exposed to asbestos. This is her reply:

I was exposed from years of wiring work for Texas Power and Light Company. Asbestos was a commonly used material in construction up until the 1980’s because of it’s fire resistant characteristic. Some of the materials that contained asbestos include wire insulation, vinyl floor tiles, paint, ceiling tiles, wall insulation, cement, window caulk, and much more. Sometimes tearing out some of these things is necessary. This can release toxic asbestos dust into the air.

Friday, September 26, 2014

Today is Mesothelioma Awareness Day

Earlier this week, Solomon's lead levels were tested again.  Unfortunately, this time, they were back up.  To 5.3 which puts him back in the "we need to find out what is going on" stage.  This level is not dangerous - it would need to be much much higher for him to suffer brain damage.  But it was high enough that we had to go back to LabCorp a few days later for a re-test, at a deeper cellular level.  Assuming those results don't come back under 3.0, that means it's time to try and find the source again.  I am praying that the county worker with the "lead gun" will finally get motivated to come out and do the investigation for us.

But why?  Why does Solomon have an elevated lead level when Hunter was tested and does not?  They're both young and live in this house.  I've been continuing Solomon's detox.  But one thing I completely slacked off on since this summer is that I have not been damp mopping the floors every other day like I was.  Did this contribute?  Lord willing we will find out more soon.

What makes some people more susceptible to some things and not others?  Why did Lilly have that 3rd copy of the 18th chromosome but most other babies in the world don't?  God knows, but we haven't figured it out yet.

Recently I was contacted by a family who's mission is to spread awareness about Mesothelioma cancer. This is an aggressive cancer caused by exposure to asbestos, that affects the membrane lining of the lungs and abdomen. The family asked if I would write a blogpost sharing their story.  I was intrigued.  I have heard of people getting cancer from asbestos, but didn't know it was called Mesothelioma cancer and didn't know anything else about it.

Cameron, Lily, Heather
When Heather Von St. James was 36, she diagnosed with pleural mesothelioma. ) She had been feeling really, really awful and had been losing 5-7 pounds a week.  Then she began to feel like a truck had parked on her chest and she couldn't breathe.  The diagnosis came only 3 months after she gave birth to a little baby girl named Lily Rose.  She was told she had about 15 months to live.  Thankfully she had good doctors and finally was able to have surgery.  One of her lungs was removed.

mother & daughter - still together
This happened 8 years ago.  Heather is incredibly fortunate to be a survivor and her daughter is so blessed to still have her mother.  With her husband Cameron, Heather seeks to share information about asbestos and mesothelioma.  Below are some things that I learned, from information they sent me.

Asbestos is a naturally occurring mineral in the earth.  So it will always be here.  However, it sounds like we need to leave it alone and not use it, as it has been classified as a human carcinogen.  About 30 million pounds of asbestos are used in building materials each year in the United States.  It surrounds us as it is in many homes, schools, and buildings.

In spite of the 30 million pounds of asbestos still being used every year, that number is actually down.  Asbestos use was at its peak from the 1930s through late 1970s.  During that time it was also commonly used in over 3000 consumer products including toasters and hairdryers.

Mesothelioma is most commonly diagnosed in men between the ages of 50-70.  However it is on the rise among women.  Those with the highest probability of having asbestos related health problems are U.S. Navy veterans who served during World War II and the Korean war.

I find it strange that it takes so long for mesothelioma to surface - it is dormant in the body for 20-50 years after exposure to asbestos.

Heather's diagnosis was rather unusual since she was a young female.  But cases like hers are on the increase, due to second hand exposure.  When Heather was a little girl, she often put on her father's work jacket when she went outside.  Her dad worked in construction and would come home from work with drywall dust just coating his jacket.  So Heather's exposure to asbestos was second hand, through her father's jacket.  (Heather's dad died earlier this year, from kidney cancer.  Was it related to his work with asbestos?  Doctors don't know.)

Every year, between 2,500 - 3,000 people are diagnosed with mesothelioma.  On average, they are given 10 months to live.  This number seems" low," compared to the huge amount of people that must be exposed to it every day.  But why?  Why the 2,500-3,000?  Why not more?  Again doctors don't know.  I asked Heather for her opinion.  She replied:  "I imagine genetics play a huge part.  Amount of exposure, type of asbestos exposed to, etc etc ... Too many factors to weigh ..."

There is currently no cure.  In fact, it is tricky to even diagnose because it mimics so many other respiratory conditions.  Symptoms include: chest pain, chronic cough, effusions of the chest and abdomen, and the presence of blood in lung fluid.

However, once the mesothelioma diagnosis is confirmed, chemotherapy, radiation, and surgery can help.  Heather's removal of her lung certainly helped her and she continues to feel great, 8 years after.  I think her obvious optimistic attitude and fighting spirit helped her too.

To learn more, here are a few links:

1) Heather's mesothelioma awareness website:  http://www.mesothelioma.com/heather/awareness/
Be sure to watch Heather's video of her story - this makes it all so real:  http://www.mesothelioma.com/heather/

2) Mesothelioma informational website, for patients and their families:  http://www.mesothelioma.com/mesothelioma/

3)  Direct link from the above site, about treatment: http://www.mesothelioma.com/treatment/

Heather says she and Lily are inseparable
I pray none of you reading this ever receive the mesothelioma diagnosis.  I'm sure many - if not most of us have been exposed to asbestos many, many times.  I am not sure but I seem to recall my dad saying he was exposed to it during his years of construction work in his youth.  I wonder about our wonderful old farmhouse we live in - it was rescued from it's dilapidated state and redone in the 1970s.  What about the stores we shop at, the offices we work at, the schools we attend, etc. etc.?

Of course we are not to live in fear.  But it is good to stay armed with information so that we can make wise decisions.  Just like with Lilly's 17 months of life.  I wish I had had more knowledge and wisdom about Trisomy 18 when she was born.  But I did the best I could and now, like Heather and her husband, our family seeks to spread awareness.

Thank you Heather and Cameron, for sharing your story with me and in turn, everyone reading this blog.  May God continue to bless you to touch many lives in your awareness work.