Linda Stiles Fox (Author) Opens up in Honor of Carcinoid NETs Day

Once Upon a Time...

There was a woman who seemed to truly have her life together…in her mid- 60s, retired with 5 grown children, 14 grandchildren and 5 great grandchildren.  For the first time in their married life, she and her husband were “empty nesters” and living happily in their new home with their dog and two cats.  She was finally doing what she loved to do…write and publish.  Then, during a trip to urgent care for acute stomach pain, she was told she was in the advanced stages of cancer.

Yep!  That was me!  I can relive that day with just the close of my eyes.  The room filled with a silence that hurts your ears and no one moved.  When I finally raised my eyes to my husband’s I saw the changes come and go…confusion, disbelief, anger and, finally, tears.  He seemed to move toward me in slow motion.  His arms wrapped around me and I thought “this is crazy!” 

I’ve spent the past year going through a lot of emotions and am thankful that I’ve come out on the other side of the worse ones.  After that day, I underwent an extensive surgery that took pieces and parts of intestines, colon and liver.  During the 13 weeks it took me to feel like a “normal” person again, I rode the roller coaster of disbelief, anger, fear, denial and hope.  Then, in January, I found a whole new emotion…ignorance.

The day the Oncologist told me this was Carcinoid Cancer www.carcinoid.org  my first thought was “huh?”  I know breast cancer and colon cancer and lung cancer and all the cancers with the matching ribbons, https://www.carcinoid.org/go-zebra-striped/ but what on earth was Carcinoid?  Between myself and my husband, we became research nerds…and, in honesty, he did the most.  I think, for me, the research brought in that haunting fear of reality and, with so many symptoms and treatments and side effects, I think I was afraid to face it all.  My husband wasn’t!     

I took my first Octreotide injection like a brave little soldier and felt so proud that I didn’t seem to be experiencing any of the things I’d heard about…until the next day.  My hip was too sore to sit, I was too tired to move and the Sandostatin serum deposited into my gall bladder with pain from chest to back.  Maybe I should’ve done a little more of that research thing!  It took only one call to my doctor to get things under control and I learned the number one, most valuable lesson…hydrate!  Water is my friend! 

I was pretty happy just going along with labs and a needle stick once a month and thinking “I got this”.  Then, after a CT scan in June, there was good news and bad news.  The spot on my intestine…a leftover from the surgery… and the spot on my pancreas were both gone.  The two spots on my liver, however, refused to move out as quickly as the doctor had hoped.  Solution?  An injection every two weeks instead of once a month with increased dosage and an oral chemo every day.  I didn’t quite celebrate the good news as much as embrace the bad, but it didn’t take long for me to remember a couple of things…I never spell “cancer” with a capital “C” because it doesn’t deserve it and I never say I “have” cancer.  I prefer “I’ve been diagnosed with cancer”.

Here’s the thing…has the path been rough?  Yes.  Have I had more side effects than I can list? Yes.  Do I have days of meltdown here and there? Yes.  I think anyone who says “no” to any of those is probably bionic!  BUT…I’ve had support down that path and my husband and I are closer than we’ve been in our entire married life.  I have really good days that make me forget what the side effect was yesterday.  And, best of all, I consider the meltdown of yesterday just a flood of tears that washed me into smiles today. 

My self care?  Trusting my doctor.  Listening to my body…when I’m tired, I rest,  when I’m hungry, I eat andwhen I’m afraid, I pray.  I ask for help.  I welcome the emotional and spiritual support of others.  And, the most important thing through it all, I try to stay positive.  I stay busy…pushing through the not-so-good days is a good thing.  Get up, get dressed, put on my makeup and do my hair then let’s see where the day takes me.  There are no “what ifs” allowed.  I see that golden ring hanging on the day I’m told the tumors are gone and I’m reaching for it. 

Today was my CT scan.  Next week I’ll know if those little devils are gone.  So, I won’t say this ends “happily ever after”.  I’ll just say…TO BE CONTINUED!

Learn more about the realities of living with Carcinoid NETs and review Project Zebra results by clicking here.