October Is Liver Cancer Awareness Month

Have you or someone in your family been touched by Fibrolamellar, a type of liver cancer? If so, please watch this video and then visit fibroregistry.org

Please consider subscribing to my channel here as well. I'd love to get to know you and have you around often.

Let me know if you have any questions.

Stay shiny,
Ashley Murphy
ashleysartcloset.blogspot.com

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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

DIY Tuesday Interview

Jennifer Zander-Currently fighting-picture provided

Today I have another interview to share with you as a part of October Liver Cancer Awareness month. Since Tuesday usually is my DIY day we are going with DIY Tuesday Interview.

What you will need:

a willing person who is currently battling cancer   
a picture of them personally
a picture of their family
pen & paper
a list of in-depth questions
honor
courage
strength 
a computer
a blog
a praying heart
a listening ear

Please help me start with welcoming Jennifer Zander!

Jennifer currently lives in Indiana. She was diagnosed with Fibrolamellar Hepatocellular Carcinoma on Thanksgiving Day in 2003 at the age of 28. Jennifer and I recently met in a cancer group, Fibrolamellars of the World Unite. It is my honor to have you and share your story as a means of giving back to others who have been faced with this nasty disease. 

Let the interviewing process begin…

Jennifer let's start with what life was like before your cancer diagnosis?

My life before cancer was actually kind of boring.  I was in perfect health, not much of a partier, more of a homebody.  I moved out of my parents’ house when I was 22 and moved in with my best friend.  I met my husband about 2 months later.  We started dating on and off for the next 3 years.  He was a partier and I didn’t know if that’s what I wanted in a husband.  Once I decided to move on for good is when he changed.  We got engaged the summer of 2002. Everything was perfect!  Wedding planning was going great, the countdown was dwindling and the day was fast approaching.  The day was January 31, 2004.  My last dress fitting was at the end of October.  I couldn’t believe in 3 months I would be married! 

Jennifer please share with us how you found out you had cancer.

On November 12^th I was at work sitting at my desk and clumsy me dropped my pen on the floor.  I bent over to the right to pick it up and I had a pain that felt like someone stabbed me with a knife.  It was so intense I fell out of my chair onto the floor.  My co-worker sitting behind me seen me fall and rushed over to help me, but the pain was so bad I told her not to touch me.  I sat for a few minutes as the pain started to lighten, then she helped me up to my seat.   I noticed my vision was blurry and I saw white stars.  I sat for a while drank some water and after some time started to feel normal again.  My co-workers urged me to go home.  So I went.  That evening I was making Lasagna, as I was pulling it out of the oven I felt that sharp pain again.  I dropped the pan, which fell onto the oven door and my hands touched the oven door, burning them.  My fiancé ran into the kitchen to see what happened and if I was ok.  He told me I better go to the doctor the following day to see what was wrong.  I woke up the next morning and informed work I was going to swing by the doctors on my way in to work.  Once I was in the exam room the doctor had me lay down and pushed on my right side and I instantly screamed.  He said he felt something large and he ordered a CT.  I went to the Hospital and had a CT done, as I was changing to leave a nurse came up to me and told me once I was dressed to wait in the waiting room for the doctor.  I was confused because the doctor told me at his office he would call me with the results.  So I waited, and waited, and waited… finally I said I’m leaving, when the doctor arrives call me and I’ll talk to him on the phone.  They told me no you cannot leave.  You have a mass on your liver.  I said, what is a mass?  Then they said a tumor, what is a tumor?  They explained to me what both were and that I needed to stay.  I immediately called my fiancé and told him to get here now.  The doctor finally arrived and had me due testing and the testing showed my blood level was half what it should be.  They admitted me and started giving me blood.  I received 2 units that evening.  In the morning, the doctor came in and told me I need to go to a hospital in Chicago because he had never seen a tumor that large in the liver during his 23 years as an MD.  That scared the s#%@ out of me!  I was released that next day because it was my bridal shower and I wasn’t missing it.  The following Monday I made an appointment at Northwestern in Chicago.  Northwestern did a lot of testing on me and told me I would have the results within a week.  We went to my families for Thanksgiving had a great dinner and some awesome family time.  On our way home my phone rang with a Chicago number.  I looked at my fiancé and said “You’ve got to be kidding me, on Thanksgiving.  This is serious”.  I answered and they asked if I was ok getting my results over the phone.  I said yes, because I knew Dan was with me.  They told me I had cancer.  

What type of initial treatment did you receive?

My doctor appointment at Northwestern was pretty much a blur.  There was so much said that I didn’t understand.  The main thing I understood was they wanted to do surgery within 2 weeks.  I said, oh no that’s not possible.  I’m getting married in 8 weeks.  Can we do the surgery after the wedding?  Politely the doctors said “No”.  We have to do it now, or you won’t be here in 3 weeks.  What??? My tumor was so large 11cmx14cm encompassing the right lobe of my liver and weighing 9.5lbs, that the tumor was cutting off my blood supply to my heart.  My right hepatic vein was dead and my left hepatic vein was only working approx. 30%.  My liver resection surgery was scheduled for Dec 12, 2003.  82% of my liver was resected, seven of your nine liver sections were removed.  I recovered well.  Dan and I got married on January 31, 2004!

You mentioned to me additional surgeries, tell us a little about that.

I was in the OR again in March 2004 for a right diaphragmatic hernia caused by the tumor.  Three weeks later in April 2004 I experienced a small bowel obstruction from the hernia and had 6” of small intestines removed.  Recovery was rough.

What did your doctors think about you having children?

We received the BEST news of our lives on December 8, 2004.  I was pregnant!! I was scared, shocked, and completely overwhelmed.  As you can tell it was not planned.  My surgeon told me not to get pregnant until at least I’m completely recovered and one year of clear MRI scans.  I was super scared to tell the doctor.  It all worked out well.  I gave birth naturally to a baby boy named Lane on August 15, 2005.

Was there ever a point you had clean scans?

My clear scans were short lived.  In June of 2006, I was told my cancer had returned.  I had a 3cm tumor attached to my right diaphragm. I was devastated to say the least.  I felt hopeless, scared for my husband and my 10 month son. I instantly started to think of his life without me.  It was horrible.  I fell into a depression.  I would lay on the couch and cry for hours.  I really thought my cancer was gone.  I was so blinded by this disease.  I thought it’s gone and out of my body.  Yah!  Umm...Not so much.  My family and friends helped me through the surgery.  Little did we all know I would need seven more surgeries in the next 10 years? Three months after this surgery my MRI scans showed another small tumor near my right diaphragm.  Back to the OR I went in October 2006.

More kids?

For the next 2 ½ years I was tumor FREE!!  My husband and I decided Lane needed a sibling.  I received the “OK” from the doctor and BAM I was pregnant the next month!  I was walking on clouds.  I gave birth naturally to our second son named Luke on June 27, 2008.  Two boys, I was in love.

I sense your heart growing stronger through this journey. Tell me more?

Dan and I decided we wanted to buy property to live in the country so the boys would have the outdoors to do anything they wanted.  We bought 13 acres, picked out our house, and planned on breaking ground in May 2009.  The brakes were put on, again.  I had a chest tumor show up on my scans. Off to the OR I went.  I had surgery in April 2009.  We decided that we weren’t letting this cancer disrupt our dreams.  We broke ground on our dream house May 15, 2009!  I believe this is when I changed my outlook on my disease.  I realized there was nothing I could do to stop the cancer from forming.  There was no cure.  My husband and I made a pack that I would live my life as normal as I could and be as happy as I could for my boys.  If/when a tumor decides to pop up again I’ll fight it with everything I have, recover and move on.  I will NOT let it control my life.  I wanted my boys to grow up knowing their Mom fought with dignity, strength, hope, faith and grace against her cancer!

A second child, a new home in progress, spirits where high at this point where were you at on treatment?

The doctors decided to have me do radiation in my chest to help prevent any tumors near my mediastinal. It was a tough spot to get to multiple times.  It was behind my heart in front of my esophagus. I did radiation for 6 weeks every day.  The only real side effect I had was fatigue.  Not sure if it was from the radiation or the traveling to the hospital every day.

You moved in your new home and then what?

We moved into our new house in Jan 2011.  I thought I was in a dream.  I never thought I would be here to see my forever home.  As we got settled in my next scans were approaching and I felt uneasy and scared.  I told myself things are going good.  I hope I’m not kicked in the gut again.  Well, I was.  There was a very small lymphoid node behind my liver that was showing up.  The doctor suggested to get it out.  Off to the OR I went in April 2011. My recovery went well.  I went on for the next year not knowing that the doctors were watching a spot in my liver, but weren’t for sure if it was cancer. It wasn’t growing hardly at all.  To date I’ve never had the cancer return to my liver.  It has mainly stayed near my right diaphragm and chest area.  The doctors decided not to wait until this spot grew they wanted it gone.  I had a procedure called Chemoembolization.  Chemoembolization is when they go through your groin up through your portal vein into your liver and inject chemo beads directly into the tumor.  Within 3 weeks the spot was black.  It was never biopsied, so we really don’t know if it was ever cancer.  I did have a complication with the procedure though.  An abscess formed in my liver.  It was large.  They inserted a drain tube into my side directly into my liver.  For the next 4 months it drained.  My doctor then noticed my liver wasn’t functioning like it should be.  I was informed I would need a transplant.  

Explain to us a little about after you were told you needed a liver transplant.

For the next 3 months I would go in every 2 weeks for a tube check to make sure the abscess was not filling up and my liver secretions were draining out through the tube.  In the meantime, I was going through 4 weeks of grueling tests and procedures for the transplant.  Once all the pre testing was done I was told I would know within the next couple of months if I was approved for the transplant.  On Feb 22, 2013 I went for my normal tube check appointment.  My doctor came into the room (which was odd he usually was behind the glass) with another doctor.  They came up to me and showed me the TV screen where you could see my liver.  Looked foreign to me...ha-ha.  They showed me that the abscess was gone!   My liver was functioning normal again, plus it healed itself!  WOW, my tube came out and I was bag free!  What a great surprise.  The doctors still suggested a transplant in case it was to happen again.  I could live with that!

Did you continued to work outside the home through all this?

On June 12, 2013 I received the call, I was officially on the liver transplant list.  I then decided to resign from my job where I worked for 20 years. Yes, 20 years! I started the day after I graduated from high school. I was ready to move on and needed some time to get my life on track and prepare for an upcoming transplant.

Another surgery? Off liver transplant list? What? 

The doctors had been watching a particular spot in the dome of my liver for about 2 years unannounced to me.  So when I had my scans in Oct 2013, they decided it needed to come out. Plus I had a small nodule on my right chest wall.  Due to the spot in my liver growing slowly and it was stable they choose to remove the chest wall nodule first.  That surgery was in Jan 2014.  Once the pathology came back and it was confirmed cancer I was taken off the transplant list.  In April 2014, they removed the tumor from the dome of my liver.  During the surgery, the surgeons realized that the tumor was not in my liver.  They actually could not find it in my abdomen.  I know, sounds weird, right?  After bringing in another surgeon to help look for it, they found it wedged between my heart and my left diaphragm.  Scary, right! Yes, I was worried and so were the doctors due to it being right against my heart sac.  Thankfully everything went well and I started my recovery.  This recovery was nothing like any of the others.  I was very sore and week.  It took me almost 4 months to start to feel like my old self.  I still as of today don’t feel 100%.  

Have you had any fundraiser along your journey?

Through the 11 + years of fighting my disease I’ve been approached by numerous people asking how they can help me.  Many people offered to put on a benefit, but at those times I wasn’t ready for that.  So after this last surgery I felt like I needed something.  After talking to my parents and my husband we decided a benefit was just the thing I needed at that time.  With mounting medical bills and traveling to New York MSKCC for treatment a benefit was organized for my family and me on June 28^th 2014.  It was great.  I had seen so many people I hadn’t seen in years.  It felt so good to catch up with all my family, friends and people I didn’t even know that came out to support me. I was so happy that day.

How is life currently, Jennifer?

My emotional and physical health has been dragging for the last 5-6 months.  I haven’t been myself and I want to change it.  With that being said, I’ve joined a new group at a place in our town called the Hope Center.  It is a great place.  It is a Christian based Cancer support group.  It has helped me open up about my feeling and taught me that people do care and want to listen and help me deal with my emotions.  They have a yoga/stretching class once a week that is free.  I’ve been going for about 2 months now and absolutely love it!  I even want to help volunteer.  Going to the Hope Center has made me happy and has also helped my boys learn how to cope with mommy’s cancer.  Since the boys are getting older now (9 & 6) they’re starting to ask some questions.  I’m glad I can answer them with confidence!

Jennifer wants us to know this is the short version of her forever fight! 

And that my friend is how you interview a currently battling cancer patient. 

(Jennifer and her family)

(Jennifer's current profile picture on Facebook)

Thanks for being with us today Jennifer! 

Jennifer, it's in my hope you gained some additional strength and courage from where you are on this journey by sharing your story with me personally first. Then allowing me to open the floor up for others to see. The releasing of it has to be refreshing, freeing. I know it will be such a light of truth for other to see. I pray for you specifically (may you be healed), your husband and your boys as well as your additional family members and friends. Thank you so much for opening your heart! You will forever hold a special place in my heart. Your family is adorable. #gogreen