Ying/Yang...That's My Reality

Warning the following post will have the F bomb and I will do lots of complaining.  If you cannot handle the reality of Desmoids then STOP! READING! RIGHT! NOW!….

The bad news: I am so FUCKING sick of hurting and being sick!!!! 

The good news:  radiation is over.  Can I get an AMEN!  

  

The bad news: I am burnt to a crisp.  Five weeks in a microwave will do that to you.

 

The good news: I traveled for work this past week. 

The bad news: The trip took so much out of me that I cried when I got there. 

The good news: I loved being back in front of clients and being with people.

The bad news: The day after radiation I got sick with a dry hacking cough and for the last 4 FUCKING  days I have not slept because of this stupid fucking cough, and to top it off when my fucking neck hits my pillow I just want to scream, but since I don’t sleep alone that is not an option.  Instead, I grab my cough drops and head to couch.  Lucky FUCKING me, WOO HOOO!!!!!

The good news: My family and friends have been there for me/us. They watch our daughter when I am at radiation and Brad is at work; they pick her up from school and invite her for playdates; They take her for overnighters and bring us meals.

The bad news: My body FUCKING aches all day long from my treatments. 

The good news: I have the best physical therapist, Lisa Martin, at Suburban Physical Therapy in Twinsburg, Ohio who knows the tricks to get me moving again. 

The bad news:  I have no energy.  None! Nada! When the clock hits 8 pm I am done, spent and ready to vacate the premises.  A far cry from the fun loving party animal, hostess with the mostest that I used to be.

The good news: I have found an outlet in this blog.

The bad news: The lotion they gave me to put on my radiation wounds stings my open sores.  FUUUUUUUUUUCK!!!

The good news: I have an understanding boss.

The bad news: Hugging is out again.  My friend came over yesterday and after 3 years of not seeing one another our first instinct was to hug and my lovely reply to her hug—OWE! 

The good news:  I am taking a lot less pain meds.  

The bad news: I make my mom cry because I cry.  Need I say more?

The good news: I am loved!

 The bad news: I have gone through all of this and there is no guarantee that the stupid FUCKING tumor will not come back.

The good news:  Right now, I am tumor free!!!

While I have  my moments of sadness, pain, depression and distress at the end of the day, I am very grateful and thankful for all the wonderful things I have today- Family, friends, a career I love, a beautiful home in a loving community and most importantly another day to enjoy all that I cherish!   What are you thankful for???

I wish you all a wonderful Thanksgiving and a very happy holiday season!!!

xoxo,

Faith 

My Dear Captain Birdseye, THANK YOU!

There are a few Desmoid groups that I belong to on Facebook and the ACOR.org board.   I read their stories and share in their frustration for the lack of answers that are out there.  It’s not just the tumor(s) that destroy you from the inside out, but it’s the unknowns that are the hardest to accept.

I could be pissed, angry and depressed.  I could spend my days in bed and no one could blame me.  But what does that get me?  Stronger??? I think not!  Happy??? Ummm, NO!  Answers??? Hell to the NO!!! Healthy??? Not likely!  However, if I choose to stand tall and fight this terrible unknown disease by creating awareness and raising money, I not only get a warm fuzzy feeling inside, but with my efforts I get the opportunity to educate one more person and raise one more dollar. 

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Don’t worry, I am not gonna stand on my soapbox today, but rather I am going to praise one amazing and very dear friend (let’s call this person Captain Birdseye because they’d like to remain anonymous) who has touched me heart in a very special way by donating a dinner for 14 at a fancy schmancy restaurant.

The lucky 14 will dine in a private room at the Hyde Park Prime Steakhouse in Beachwood, Ohio.  Their minimum donation of $50 pp. will allow them to enjoy a 3 course meal (appetizers, meal, and dessert) and their adult beverages and all proceeds raised will be donated to the Desmoid Tumor Research Foundation (DTRF).  Did you do the math?  That is $700 dollars!!      

I am so honored that the dear Captain Birdseye has come into my life and befriended me and is helping me to spread awareness and raise money so that we can find our answers.

Thank you Captain, I LOVE YOU!!!    

xoxo,

Faith

Radiation, First Time and Hopefully the Last

Tomorrow will start week 5 (final week) of radiation therapy --- Insert WOOOO HOOOO!!!!! here--- And after weeks of daily radiation I now consider myself an old pro, however this was not always the case….

My first treatment was supposed to be on Friday, September 28^th  but the clinic called and requested that I postpone till 2:00 pm Monday, October 1^st and since I was not scheduled to go back to work until October 10^th, I was quick to oblige.---- Insert a big OPPS! here. --- As soon as I hung up, I remembered that we had a 3:30 pm teacher meeting scheduled that same day.  I immediately called back, explained my situation and asked for an earlier appointment.  “Sure” she said, “7:45 am is available”. 

WHAT??? Did you miss that I had a kid??? I thought to myself.  “I have to get my child on the bus so that time will not be suitable” I sweetly replied.   With a snotty reply, she said, “We are really busy; we have 40 patients in treatment right now.”  I thought to myself, Lady I am accommodating you not the other way around, but rather fight with her I took the 2:00 pm time slot. 

When I got there at 2 pm Monday, I met the crew (3-4 technicians) including the not so accommodating lady who we’ll now call Ms. Not-So-Accommodating. 

When I got on the table I was a bit nervous, I had NO idea what to expect.  The crew began putting me into position and kept throwing out a bunch of directions at me, “lie on your belly.”  “Move your arm here.” “Move you head this way.” “Tuck your chin.”  “Slide up.” “Slide down.” Etc. Etc. Etc. 

 

 

I find that when I am in an unfamiliar situation or nervous I tend to joke, and this time was no different.  While they were moving my body in contortionist form, I joked “Do you want me to hold a bag of popcorn or a cup of coffee for you?”  I got my chuckles, but Ms. Not-So-Accommodating replied in her snotty tone “No.”  “I am just kidding”, I kinda snapped.  “I know” she replied back.   OH BOY!! This is going to be a looooonnnggg 5 weeks, I thought to myself.   

The next day when I arrived for my appointment the technician immediately called me to the therapy room.  While waiting for patient #1 to come out of the treatment room patient #2 (who is scheduled for treatment before me) was a bit miffed that she was skipped over and left.  In all fairness to the techs (including Ms. Not-So-Accommodating) patient #2 was with the doctor when they called me back.

Anyhow, when I got into the room I told Ms. Not-So-Accommodating what had just transpired and she began to shoot the messenger (me).   

That’s it, I had enough; I was tired of her attitude.  What the F_ _K???  Where is her compassion?? For the last year I have dealt with this stupid tumor and now I have to deal with her too???  I D O N ‘T THINK SO!!!

So when it was my turn to visit with the doctor, I gave him an ear full and asked that she not speak to me unless she absolutely had to.  And guess what?  The very next day Ms. Not- So- Accommodating became Ms. Sugar-And-Spice-And-Everything-Nice. 

Folks you are in charge of you and your care.  If you are not happy with how someone is treating you say something and make it right.  They work for you and not the other way around!   

xoxo,

Faith   

P.S. Radiation treatments are virtually painless and take anywhere from 5-20 minutes depending if the doctor needs x-rays or not, but boy are they EXHAUSTING and I am looking forward to my last treatment on November 12^th---Insert very loud and very big WOO HOOO!!!! here.  

P.S.S. Ms. Not- So- Accommodating and I now get along very well and even joke around a bit together.