When I was diagnosed with late stage liver disease, there were no treatment options for me. 
Aside from a liver transplant (which I wasn’t sick enough for and many die waiting for) there was nothing.  That was in 2015.
Luckily my disease remained stable for 2 years. I made some lifestyle changes.  I stopped drinking sodas and eating foods with preservatives.  I walked as much as my body would let me. I starting seeing an Endocrinologist and a Rheumatologist.  I prayed- a lot!

In 2018 I learned of a clinical trial for my form of liver disease and began the screening process in March.  The clinical trial is a double-blind trial.  That’s means I would either get the actual trial drug or I would get placebo- a sugar pill.  I wasn’t worried about getting the placebo.  I wasn’t taking anything anyway so it wouldn’t be a loss of anything except my time, and I was getting paid for my time too.  $150 each visit to cover my commute, gas and parking.  I was 100% in if they would accept me.  And they did.

That was 6 months ago. 

Since then I’ve developed drug side effects.  I have a mean rash on my face, chronic constipation, bloating and joint pain. I was pretty certain the pills I had been taking was the actual trial drug and not just placebo.
Last week I had my month 6 ultrasound, fibroscan, blood work and scans.  (The scans I had had before the trial showed a very cirrhotic inflamed liver.  Dr. G said there was “progression.”)

The scans last week showed a smaller, healthier liver.  I was elated. The drug is working. While I look and feel a bit sicker- my liver is getting better.  It’s a trade off right now I guess.
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Research is so important.  Don’t be afraid of clinical trials!   Clinical trials and participating in clinical trials will help scientists find the right dose and right combination to treat and possibility cure certain diseases. They can also be viable treatment options for people with untreatable diseases- like me!  

Recently I attended a healthcare meeting in my area. 
I was asked to share my story as a survivor of cancer and stage 4 liver disease.  It wasn’t a difficult thing to do- I’ve told my story several times- what was difficult for me were all the comments after. I’ve never been someone who accepted compliments well.

You’re such an inspiration!
You’re so strong.  You are a warrior!
I wish my patients were advocates too!
 
I’m I really an inspiration?  I work with and support cancer patients who’ve been fighting to live for years longer than me.  I don’t necessarily feel strong or warrior-like.  I’ll admit the uncertainty of my disease has gotten the best of me from time to time.  And self-advocacy – even for a 15 yr lung cancer advocate- did NOT come easy when it came to advocating for myself with my own disease.  Those first 6 months I was lost in the medical system and had no idea what I was doing.  Living with chronic or late stage disease is a process that you are forced to get used to and every experience is different.
So, I just smiled and thanked everyone.   Later at home I thought about all the things that would make a person an inspiration, strong, and empowered.

I don’t think someone is an inspiration simply because they survived a disease. If you were a passive patient who survived thanks to your medical treatment and team- well- you’re just lucky. Count your blessings every day!
Someone who takes their experience and survivorhood and informs, supports and/or empowers others- is an inspiration and inspires others.

If you went to every scheduled doctor’s appointment, test, treatment and scan- following your healthcare providers plan for you- you’re not necessarily a “strong” person.  If you did all of those things while caring for children, holding down a job, supporting others or against some other sort of personal adversity- you are indeed a pillar of strength.
A patient who complains about situations and exhibits anger towards others- isn’t an advocate.  It’s the patient who identifies unmet needs and works towards meeting them.  The squeaky wheel may draw some attention but you still need to drive that car over the finish line.
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Inspire.
Strength.
Advocate.
 
Do you have the strength to inspire and advocate for others?
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