Association for Multiple Endocrine Neoplasia Disorders

“I found incurable to be unacceptable. I wasn’t able to control my diagnosis or the fact that I had cancer, but what I was able to control was how I approached my diagnosis.”

Becky MacKenzie currently works as an Occupational Skills Trainer for Goodwill Industries of Southwest Florida.  She is very active with the American Cancer Society Cancer Action Network (ACS CAN) and is on the Board of Trustees for AMEND USA.  She is also a featured blogger for Mass Kickers Foundation.

What/ when was your diagnosis?  How did you find out about your diagnosis?

On February 16, 2009, I was diagnosed with metastatic Medullary Thyroid Cancer as a result of a genetic disorder called Multiple Endocrine Neoplasia Type 2a.  After a couple of years of feeling run down, chronic infections and bouncing from doctor to doctor I had a genetic test that confirmed the disorder and a neck ultrasound and fine needle biopsy that confirmed the Medullary.  I never forgot the words I heard that day, “It’s medullary, very rare.  We’re going to take care of you.  We know of at least one surgery you will have.  There is no medicinal cure.”  Those were the most life-changing, jolting words I have ever heard.

What were your symptoms?

I wasn’t feeling like myself for a couple of years.  I had constant headaches and infections and contracted MRSA twice. I don’t know if those things are related to my cancer, but I know that I haven’t experienced anything like that since my first surgery.  At the time, it was like my body wasn’t doing what it needed to do in order to fight things off and I was always tired.

Why did you get involved with advocacy?  What groups are you involved with?  What do you do?

I found incurable to be unacceptable.  I wasn’t able to control my diagnosis or the fact that I had cancer, but what I was able to control was how I approached my diagnosis. I really believe that, in my lifetime, we’ll find either a cure or more drugs to help maintain stability.

I am involved with the American Cancer Society and their sister organization, the American Cancer Society Cancer Action Network (ACS CAN).  I started telling my story at local Relay for Life events and became the Advocacy Chair for one of them.  I learned that the government is the largest funder of cancer research in the United States and that the American Cancer Society is the largest nongovernmental funder of research.  Together, they do so much!  Living with an incurable form of cancer, I feel like it’s my obligation to ensure that funding is available for that research.  I am now the ACT Lead for Florida’s 19th Congressional District.  In that role, I talk to people about public policy that will affect cancer patients and encourage lawmakers to support legislation that will help people affected by cancer.  That includes legislation affecting cancer research and a patient’s quality of life.

I also serve on the board for AMEND USA.  It’s important to me that people who are diagnosed with cancers and disorders like mine have a place to go for accurate information and support. AMEND provides both of those things both in the United States and on a global scale.  Having a rare disease can be complicated, so it’s essential to locate good information and expert care.

Who is your hero or heroes?

Kris Carr rocks.  She is way up there. I watched her documentary, “Crazy Sexy Cancer,” two days after I was diagnosed and she helped me develop an “I can do this” attitude.  She was so relatable!  We were both incurable, both diagnosed around Valentine’s Day and both willing to look at all aspects of treatment.  I look up to people that can take a circumstance that tells them “you can’t do this,” and turn it into “yes I can” and sweet freedom.  Life is full of obstacles, but even more so, it’s full of sweet freedoms.  Then there’s Brian Williams.  Yes, the news anchor!  I think he’s remarkable.  I’m completely obsessed with him.  So much so that he got away from me very quickly when I once saw him in public.  I think my excitement scared him!  I think he’s intelligent, well-spoken and beyond funny and he has the career I wanted when I was growing up.  If anyone knows BW, holler at me.

What motivates you?

Feel good music, the movie, Rudy, and people that emit that feel good vibe.  It’s noticeable!

When was the first time you felt like yourself after your diagnosis?

I’m not sure.  At some point, I definitely started feeling a new sense of self, more comfortable in my own skin.  I like myself in a way that I don’t think I ever did before, but I’m not sure how or when that happened.  I just know that I’m glad it did.

What makes you laugh, cry, get angry?

My Mom (funniest person ever) makes me laugh.  So does Stephen Colbert.  And laughing makes me cry.

I get angry when someone diminishes another person’s pain.  Everyone’s story is unique and everyone feels pain differently.  Telling me my cancer is the good kind to have, for example, might prompt me to lecture you for an hour about the effects of thyroid cancer.  Spend a day in my world and you’ll see that no matter what goes on in my life, I always carry cancer in my back pocket.  I don’t have any other choice.

What would you say is the most interesting thing you’ve done?

I’d say the endurance events I’ve participated in.  Last January, I ran the Goofy Challenge at Disney World.  That event consists of a Half Marathon on a Saturday and a full marathon the very next Sunday.  I also ran a relay race across Florida.  After that, I hiked the Grand Canyon.  People always ask why I participate in endurance events like that.  Why not, though?

What was the toughest challenge you faced as a survivor?  How did you overcome it?

Pre-diagnosis, I was afraid of everything.  I think I could have been classified as a hypochondriac.  Seriously.  Actually hearing the words, “you have cancer” made me want to board up my house and stay in there forever.  Mentally, I didn’t do very well at first and I had a hard time getting back into life.  I started networking with young adult survivors online and witnessed other people living with their diseases.  They weren’t dying of cancer.  They were LIVING WITH it.  Like fully and completely living.  Everyone deals differently and there isn’t one set way to vent or behave, but I think that at some point you have to make a choice.  You can either board up your house and stay inside or you can embrace the sweetness around you.  I got to a point where I didn’t just want to live; I wanted to experience life.  I credit my fellow survivors with that.  My cancer’s not going away today or tomorrow and I will not let it get the best of how I feel.

What are 3 things you can’t live without?

My cousin, Erin, because she’s the sister I never had and she always brings me back to Earth when I need it the most, NBC Nightly News because Brian Williams is my idol and my Mom because she loves me no matter what.  I know what I CAN live without.  My thyroid… Don’t need that thing!

What do you like to do in your spare time?

I run like there’s no tomorrow.  I love running and I don’t know where I would be without it.  A good portion of my free time is spent being with myself out on the road.  Other than that, I love hiking, exploring new cities and reading about Presidential history.  I’m training for the Philadelphia marathon in November.  This will be my third marathon and one I’ve always wanted to do!

Any advice for people or loved ones who get daunting diagnoses?

No one person can tell you how to deal with your diagnosis or what’s acceptable.  We are all different with varied experiences. Be fearful and angry when you need to.  Fear and anger feelings and stifling feelings isn’t healthy.  But be grateful when you can, as well.  You deserve those moments, too.  Cancer’s never easy and I’m not a person that believes that everything happens for a reason or that you have to find a silver lining in everything, but I know that just when you think the world might fall on top of you, hope breathes through.  I believe in hope and I believe it’s always somewhere.  You never know what breakthrough, piece of good news or act of kindness is just within your reach.

Tell us something about yourself that people probably didn’t know… anything.

I’m petrified of birds.  It all started when I was a little kid and Tom Turkey bit my finger when I stuck it through a fence.  My relationship with birds went downhill from there.  Also, I love Motown.  The Temptations all day, baby!!

Any parting words?

Tell your story. Your story will help fund research and encourage others to do the same.  Your voice is powerful and effective.  Never, ever think otherwise.