Post No. 1 for The Survivor Project

When Janet first mentioned this project, I knew I had to be involved. In addition to offering to manage the project, I decided to donate my Pocket Chino Filofax to one of the participants. I couldn’t be more excited that Cindy now has the binder to share about her Survival Project. Cindy is quite the inspiration, having survived cancer TWICE. How amazing. Let’s meet Cindy.

Hello everyone..thank you for allowing me to share a little bit about me and how I use my Filofax on my journey through chronic illness and cancer.

My name is Cindy Huston, I’m 46  and live in the beautiful Panhandle of Florida.

I’m am a two time cancer survivor… first in October 2000 and in August of 2012.  My last surprise cancer diagnosis was a surprise of kidney cancer also called renal cell carcinoma… as of right now I am doing okay but you can’t let your guard down… testing every 3months right now for it… it is a cancer that does not show up on pet scans or blood tests. It is usually diagnosed by an incidental finding of another illness or complaint as mine was…

Mirroring my kidney cancer, I found out I have cyclical Cushings disease..(rare to have) it has to be one of the worst illnesses ever.  It is caused by a small, tiny tumor usually in the pituitary gland(brain)  and it sends wrong signals to the rest of your body disturbing metabolism, thyroid, and every hormone.  It causes severe, debilitating symptoms and destruction of your entire body.  It is hard to pinpoint the tumor due to size and the cycles in which cortisol is released.. This is whats commonly known as adrenaline..the flight or flee feeling you have in your body..I am in the stage of seeing specialists to try to pinpoint where the tumor is.  Usually it takes several years to get the diagnosis and treatment.  I really hope soon the endocrinology specialist can find this to put me on a path to remission. Very few doctors study cyclical Cushings and soon I am traveling to CA to see one of them…I traveled to Houston, TX last month to meet with a top pituitary surgeon.

My survival -guide- will show how I chart my symptoms which is very important to me and my doctor which will allow testing when its in high cycle as that is the most important to track.  With Cushings, your emotions and memory is affected too.  I have custom designed my doctor appointment visits and symptom charts with the help of Pia, of Piaric to be able to remember everything I am told by my myriad of doctors.

I have a family too..two boys 18 and 23 and my husband Steve..they really don’t understand this illness, so journaling is important in expressing myself. Last but most important is the cost of tests which are repeated often and are expensive.  A lottery win would really be helpful 🙂

I received a beautiful pocket binder in fawn colored is so soft and has become a best friend.  I look forward to sharing my struggles and triumphs and how I keep track of my illnesses as life still continues around me.

Pictured are my binder from J, my different inserts I created with set up help from wonderful Pia.  Papers, ink colors and basic color coding helps me make my life more simple. I am not an expert organizer at all.  I’m still learning what will work for me. 🙂

9 thoughts

  1. Hi Cindy ! Blessings and hugs to you first off….I just discovered your posts via #4, and the use of the Chino Filofax binder..what great tools to use to keep track of medical appts and the like…I always bring my FF but end up forgetting so much. The structure and layout are perfect and to the point (see post #4) and i’m incoporating this now in my health section of my binder.
    You are truly strength and inspiration ! Thank you for sharing your journey. I’m a cancer survivor too and wish you love, light and continued health. pat

  2. Hugest hugs and prayers your way. It was so lovely to read that you are in the best medical hands in the world and boy you are positive. Keep going at it… cancer has taken up unwelcome residence in your body…. time that uninvited squatter was booted on out once and for all eh??!!

  3. You are in my prayers. I’ve lost a few people in my life to cancer. This is a horrible disease. Hugs and kisses.

Leave a Reply