Showing posts with label fibrolamellar cancer foundation. Show all posts
Showing posts with label fibrolamellar cancer foundation. Show all posts

Let Our Green Voices Shine


Our family blue Ford LTD drove in the school entrance. As my 6th-grade body leaned against a slender chocolate color pole. When the Ford circled the pickup lane, I stepped towards the edge of the curb. Mother’s hands gripped the stirring wheel as she drove us back to her workplace.

She parked and I grabbed my book bag. On one shoulder it draped as I walked in her workplace behind her. In the corner, I nested for a landing of homework while she finished a day's work.

In a swivel hairdresser chair across from mother’s station, her boss sat.

The week before mother told me, doctors diagnosed her boss with breast cancer. It was the first as a child my ears heard the words "cancer". My mind did not recognize the meaning. Until mother explained it the best she could.

We later left her workplace heading home for dinner with the family.

Months later, mother told us her boss fought the breast cancer leading into remission. Life carried on as usual. A short two years later, her cancer struck a second time. This time she peacefully lost her battle here on earth.

Since then, breast cancer awareness has grown and survival rates have increased.

Moving on years later, at the young at of 23, I was diagnosed with Fibrolamellar, a rare liver cancer. Of course mother’s boss was the first person I thought of and second death flashed in my face. My cancer was detected at an early stage during other medical concerns. Because of this, a resection was performed with no additional treatment and no reoccurrences -to date. This particular cancer is not usually found until it is too late. Meaning, once it has progressed, a liver resection is not a suggested treatment plan.

Fibrolamellar is one out of five types of liver cancer:

Hepatocellular carcinoma (HCC-hepatoma)
Fibrolamellar (rare type of HCC)
Cholangiocarcinoma (bile duct)
Angiosarcoma (blood vessels of the liver)
Secondary liver cancer (liver metastasis, spread from other parts of the body)

Fibrolamellar is common in teens and young adults. 1 in 5,000,000 are diagnosed with as little as 1,000 each year worldwide. Fibrolamellar was first detected in the early 1950’s and named by John Craig, MD. Dr. Craig currently is on the board of directors of the Fibrolamellar Foundation. So few are diagnosed most have not heard of it. Even in some towns medical personnel have not. Families have traveled far from home, even moved states, to seek treatment with doctors familiar with Fibrolamellar.

Most are not aware, Liver Cancer and Breast Cancer awareness both share the month of October. 

Each October the liver cancer community is a tiny crumb of green on a chopping block of pink. It is not about toning down the pink. More about spicing up the green letting others hear our voices too. There is no need for a green wash out of soup cans, mixers, etc. Yet, the acknowledgment, our lives matter too. Until our voices are heard, effective treatment plans and early detection plans will stay non-existing. I speak on behalf of all liver cancer types, there is more to life than “think pink”.

Because I am a member of a Fibrolamellar group, I witness others lose their battle. This year alone, we have lost the most from our small group. Husbands, wives, moms, dads and siblings say goodbye until eternity.

The scar etched between my breasts to my belly button is only a physical marking of my cancer journey. The emotional pain no matter if I cram it in the back cobwebby corner of my mind it still surfaces. It does not go away. Similar to if you lost a parent or a child, fought in a war, or suffered another type of traumatic event. It’s part of my life story. It reminds me to speak up. Not to turn a blind eye on you or me, nor our families -future generations. Even on the hard days, I do not want to share or days panic attacks from old emotions flare posttraumatic waves.

My dreaming passion is one day there will be better detection and treatment plans for all liver cancers. Just like there has been over the years for breast cancer and other types of cancers.

Therefore, I leave with you these words “think green,” “think liver cancer awareness” too this October. 

Let us fight for all. Honor. Support. Advocate.

Let us shine a ray of hope in the cancer community together. 




This October, banners like such, were hand created by Ashley for Facebook profiles.

Portions of this blog post were published earlier this month on ihadcancer.com

Join Ashley's silent art auction this month as she raises money for liver cancer research.

“You are the world’s seasoning, to make it tolerable. If you lose your flavor, what will happen to the world? And you yourselves will be thrown out and trampled underfoot as worthless. You are the world’s light—a city on a hill, glowing in the night for all to see. Don’t hide your light! Let it shine for all; let your good deeds glow for all to see, so that they will praise your heavenly Father. Matthew 5:13-16

Tracy's Thursday


(Tracy-liver cancer survivor-Minnesota)




(Cupcakes from Tracy's 3 year survivor party)

Only thing green here today on the blog is green for honoring Tracy O. from Minnesota. Tracy is pushing towards being a 4 year liver cancer survivor. She joins us sharing her story this October day for Liver Cancer Awareness month. Usually on Thursdays, I share the green turtles who reside here at The Murphy Lodge, Thursday Turtles

Tracy start by sharing with us what life was like before cancer ?

When I was diagnosed with cancer I had been married to my husband, Jon, for almost 8 years. Our daughter, Lesley, was 5 years old at the time. I am nurse and received the phone call with my biopsy results telling me I had fibrolamellar hepatocellular  carcinoma while at work.

How did your work family handle your diagnosis?

My work family had been walking beside me the few weeks leading up to this and I am forever grateful for their support. Their support continued as I went through my liver resection and was off work for the next 6 weeks. They blessed our family with food, treasures for Lesley, and monetarily. I will never forget their support.

How did you find out? What were your symptoms?

I had been having a work up for some side pain for about 6 months before my diagnosis on April 27th 2011. I ended up in the ER on April 12th due to the side pain being so severe. The doctor thought for sure it was my gallbladder causing the issues but after the CT they ruled that out. He sent me home with pain meds and that was the end of that. The next day I got a call from the ER that the radiologist read it as a "spot" on my liver and I should follow up with my regular MD. So the following day I had an ultrasound, which was still too general so I had an MRI the following day, the 15th, and got the results within an hour that I had a mass in my liver. All the testing happened very fast for me which led to a quick diagnoses.  That is all in all a great thing.  I was referred to a liver specialist. On April 21st I saw the liver specialist and he said that a biopsy was needed along with some blood work to check tumor markers. The tumor markers were negative and I was scheduled for my biopsy the following Tuesday the 26th. 

Tell us a little more about the day you received the call at work.

My phone rang at work on the 27th and I got the news that has changed my life, that it was fibrolamellar hepatocellular carcinoma. I was so lucky to be scheduled with the liver transplant specialist and liver surgeon the following day. Both were incredible, kind doctors. Both of them agreed that a liver resection was the way to go and I was scheduled for surgery on May 2nd. 

What type of treatment did you receive? 

The liver resection is the only treatment I have had. They ended up taking the tumor with 30% of my liver and 7 lymph nodes.  All lymph nodes and margins were negative. The tumor was 10x9cm.  I found out my tumor was mostly stage 1, only mentioning of stage 2 because of the size.  
I was off work for about 6 weeks. No chemotherapy or radiation was needed.  

You mentioned to me your moms help, explain

During that time my mom helped to take care of me so that Jon could go back to work.  I knew my mom was the best before all this happened but God truly blessed me when he gave her to me as my mom.   

Emotionally how did you handle everything?

Things didn't really "set in" that I had cancer and was a survivor until about 3 weeks after my liver resection.  I then began to deal with a great deal of anxiety.  I still deal with "scanxiety" when my scans draw near, as I still get them every 6 months, and will continue with the every 6 month plan for several more years. 

Tell us what you have learned along this journey?

Being diagnosed with cancer at the age of 28 was very difficult.  Young adult cancers and the kind of cancer I had are both rare.  At the age of 28 you don't expect to be dealing with things that come along with being a cancer patient.  Your suppose to be raising your family and enjoying life.  I know try and slow down and every single day find something I'm blessed with.  Life has a whole new meaning to me than it did 3.5 years ago.  You can't take a single thing for granted and you have to tell people you love them. 

Tracy how did you find the Fibrolamellars of the World Unite Facebook group?

I was searching online for anything I could find to do with fibrolamellar.  On the American Cancer Society website I dug and dug and ended up finding Casey who was already a member of the fibrolamellar group on Facebook. She connected me with Tal, the founder of the group, and I became part of the group in summer of 2011.

Might I add, the Fibrolamellar of the World Unite group is where you and I met just after you joined. I've noticed you've had some involvement more in depth with the group, share with us a little more about that.

After I had been an active member of the group for about 2 years I was asked to be an administrator.  As an administrator, I welcome new members and try to connect them with someone if I know they have a "similar" story, if they are located close to someone, or just take the time to listen.

Also, I've noticed your fundraising for The Fibrolamellar Cancer Foundation, share about that. 

I have done 2 different fundraisers for The Fibrolamellar Cancer Foundation.  I sold t-shirts last year and this year I am selling coffee as part of October being Liver Cancer Awareness month. 

I saw you recently went to Vermont tell me about that. 

I have been blessed with going to the family gathering for fibrolamellar patients and their families for the last 2 years.  This has been held at the Trout Lodge in Stowe, VT.  It is hard to explain in words how much those 2 weekends have impacted my life.  Meeting others going through this journey, meeting families of fibrolamellar patients that have passed... being a face of hope.  I do struggle with survivors guilt but those parents that I have met, have made me feel so loved.  Shout out to Martha Ann and Harry! 

Lastly, I know your family has not only been touched by cancer with you but also your father tell me about that. 

I was exactly 18 months into my journey when my dad was diagnosed with stage 4 metastatic lung cancer.  His battle only lasted 3 months.  As hard as this was on me, it brought up some really hard questions from my daughter.  Like "mom, is your cancer going to come back?  Will you die from cancer mom?"  No 7 year old should have to know stuff like this.  I will fight on every day… knowing I will continue to beat this for my dad!

(Tracy and her family) 

(Tracy's trip to Vermont this year with the Fibrolamellar Cancer Foundation)

Tracy, I can't thank you enough for taking the time to pour out your precious heart. Meeting you just months after your surgery has brought us through a lot together. We have coached each other along the way, cheered others on, watch many of our friends gain their angel wings and you've read my book allowing your soul to know me on a deeper level. All those things have brought us so closely together. I know I can reach to you anytime. Not only or we survivor sister but we are sisters in Christ. We shall meet in person one day when you come to Mississippi, lol!   I seriously thank God for your journey and will continue to pray for clean scans for you sweet girl. Giving Him all the glory knowing we shall seek His face through it all especially "scanxiety".

Check is in the MAIL

After calculating my portion-of-proceeds
in my first year of books sales, I mailed a check
today to the http://www.fibrofoundation.org/.

If you have written a book you know
the profit can be slim by the time
you pay for everything on your end
to make it happen! Well unless you
sale a trillion.

So even though my check might be
small in my eyes, it's really big
in my heart knowing I did my part!

Fibrolamellar Cancer Foundation

I am honored to share with you
I am one of the faces of fibrolamellar
on the Fibrolamellar Cancer Foundation website.

This Foundation was founded by Tucker Davis in 2008
with the hope to raise awareness of FHC-Fibrolamellar
Hepatocellular Carcinoma-liver cancer
and possibly find a cure. As a very passionate person
about this rare cancer, Tucker lost his battle early last year!

His family and friends are
carrying out his wish to find better treatment,
find answers, find a CURE!!! Although I didn't ever
personally speak with Tucker, I was aware of his foundation
when I was contacted by his girlfriend.

What I am really happy to share with you is a portion of proceeds
from the first year sales of my book, Daddy's Briefcase
will be donated to Fibrolamellar Cancer Foundation. Just like Tucker,
I've been very passionate about finding answers for this rare cancer...
it's my hopes that my small donation from the book sales
will do great things to carry on this foundation.

The Fibrolamellar Cancer Foundation features
The Foundation :What We Believe, Who We Are
Tucker's Story: Tucker's Message, Tucker's Diagnosis and Treatment, A Mother's Story
Understanding Fibrolamellar
Research: Current FCF Research Project
Patients and Families: Get Help and Support, Faces of Fibrolamellar, Keep on Tuckin', Share Your Story
Ways To Help
and more...

I want to give a big shout out to those behind the
Fibrolamellar Cancer Foundation.
What an outstanding job to carry out
Tucker's legacy...the FHC community needs you! This
is the most FHC activity, other than the facebook group,
Fibrolamellars of the World Unite,
I have see and been apart of, Thank You!

I've dreamed for along time for something like this, Fibrolamellar Cancer Foundation! In a weird twisted way,
I am honored to be one of the faces...
to help make a difference!!!