Attack Plan

I had an  a’ha moment, but before I can tell you why, I need to share what has been going on with me these last couple of weeks that led up to my a’ha moment.

Friday, September 7^th I had my 4^th MRI of the year.  I am such a pro at these now that they no longer freak me out.  For anyone not familiar with MRI machines they are like tubular coffins on a UFO. 

When I had my first MRI they told me to close my eyes and not open them until they pull me out.  However, I am one of those kinda people who when told to do something my curiosity takes over and I do the opposite.  Boy, I wish I would have listened to them! When I opened my eyes and saw I was in this white tunnel that was just slightly bigger than me, I immediately told them to PULL ME OUT!!!!  The technician obliged.  “Can’t they do a CT Scan, ultrasound, anything else?”  I cried (literally).  Long story longer, they said this was the best method to see whatever was going on in my shoulder.

Today I kinda look forward to MRIs and think of them as nap time.  They strap me in supper tight so I am unable to move, they put my head phones on, I instruct them on the type of music I want to listen to and they slide me in to the tubular coffin and the machine goes on.  Click the video below and you’ll understand my UFO metaphor.  BTW, my eyes are closed as soon as I lay down on the table.

I promise, we’ll get to the a’ha moment soon….

On Monday, September 10^th I followed up with Dr. Koon.  Doc said, “So what do you think?”  “How are you feeling?”  My reply, “I am ok; I think it grew, but it is hard to tell because pain management is doing a good job managing my pain.”  “Well, Faith actually it’s about the same.”  WOO HOOO!!  That might not sound like exciting news to you but to me, brad, and doc it is great news.  This means that the drug, Gleevec, worked to stop the blood flow to the tumor.  Now, Dr. Koon wants me to meet with Dr. Getty to discuss removing the stupid tumor (aka. Shirley). 

Skip ahead to Thursday, September 12^th, I met with Dr. Getty who agreed that surgery is a good idea.  You see Dr. Getty recommended back in March when we discovered the reacourance of the Desmoid that I meet with Dr. Koon and discuss my medication options.  I was a bit angry, I was having pain and wanted to get this thing out of me but dr. Getty had a good argument , “Faith, I am a surgeon, I am happy to do surgery however I think you should try the medications.” “We had clean margins and the sucker came back.”  “Doc, if I were your wife what would you tell her to do?”  “Faith, I would tell her to meet with Dr. Koon.” 

So I reluctantly met with Dr. Koon and started down the medication path.   Month after month the pain got worse and the tumor grew while I was on Tamoxifen; then I started Gleevec and as stated above it did not grow.  

Thank goodness I did not just jump into the surgery.  Yes, it could have been successful but remember there is no cure for this disease.  It can come back at any time and I have no other means of attack and every time he goes in he takes more and more muscle. In fact, this stupid tumor can lead to amputation.  Now that is the glass half empty, but it is my reality so I need to weigh all my options.  Anyhow, because I worked with the doctors and listened to them (and even challenged them at times), we now have a plan of attack.  I am having surgery on Wednesday, September 19^th and we will follow up with radiation and continue the Gleevec.  I am very hopeful that this plan will work. 

This brings me to my a’ha moment… in a few weeks my neck will no longer hurt!  WOO HOO!!!!!   

In lieu of flowers, I ask that you make a donation to the DTRF foundation and help me exceed my goal of $5,500.  https://www.firstgiving.com/fundraiser/faithzdalton/running-for-answers7

xoxo,

Faith

FAQ

I am frequently asked, and by frequently, I mean several times a day about how I am feeling.  It is ok, I know people only ask because they care and I hope they continue to ask.  It’s my reply that always makes people kinda uncomfortable- “About the same”, I say “the pain meds area G-D SEND they help LOTS”.  They reply “What are you taking?”  Me: “Pain Management just upped my Morphine to 3 times a day and in between I take prescription Ibuprofen a couple Oxycodone and Cymbalta.”  Them: “Oh, Faith, I am so sorry that sucks!”  Folks, it does not suck at all! I am grateful to be able to manage the pain mostly.  

 

Another popular question is in reference to my husband and how he is handling it.  If you recall in my Awareness post, I mentioned the Adenoma and now this Stupid Tumor.  Poor guy really got the short end of the stick when it comes to spousal health.   People, I am the LUCKIEST women alive!!! My husband, Brad Dalton, is the most caring and loving man.  I see the pain in his eyes when I cry.  He comforts me with a soft touch (he knows how to hug me without hurting me).  He makes me laugh when I am at my worst.  When I told him I would gain weight from the meds, he said who cares that’s not the important thing.  I can honestly say that I did GREAT when selecting my life partner.  There is no man Better!!!

Occasionally, I am asked how my employer (Putman Media) is handling my many doctor visits, MRIs, and frequent breaks.  You know that saying the grass is green on the other side?  IT IS NOT FOR ME!  I work for the most compassionate and wonderful people.  The CEO sent me flowers, reached out to me via phone and supported my fundraiser with a generous donation with both a corporate and personal donation.  In addition, many of my colleagues reach out to check up on me as well as contribute to the DTRF foundation.  I Love my job, my clients, my coworkers….I hope to never be kicked out of their club.

Do you have any questions for me?  If so, I invite and encourage you to post them below.  I will do my best to answer them in a timely manner.

XOXO,

Faith    

How Many Ways Can I Say Thank You?

I have said it before and I am sure I will say it many more times, I HAVE SO MUCH TO BE THANKFUL FOR!   I have a great relationship with my parents and siblings; I have a loving husband and beautiful daughter; I have a great career, awesome boss and wonderful co-workers; I live in a lovely home in a great neighborhood with a fantastic school system, and yet every day I find something else to be grateful for.

Last week I started a fundraising page for the upcoming annual DTRF Patient Symposium and Running for an Answer charity event.  While I will not be able to attend this year’s conference, I thought it is my duty to help support the foundation and my fellow Desmoidians with this simple task. 

Setting up my page took little effort on my part.  It was fairly simple.  I had to complete a registration page and set a goal.  Easy, right?  The hardest part is asking my friends, family, co-workers, companies and strangers to support yet another cause. But the truth is if I am not willing to standup and ask folks to help with this important cause who will? 

So I set up my page.  Like I said, simple.  Next, I posted it on my Facebook page.   Then, I created a Facebook event and invited my entire network of over 300 people to join in this online event.   In addition on October 3^rd, I will host a Premier Jewelry party where 30% of the net proceeds will be donated to my cause.     

Today we live in this social media dynasty where with one simple click of the button you can reach hundreds if not thousands of people in less time than it takes to order a pizza…Quite frankly it has never been easier to reach people then it is today. 

So with this post, I want to say THANK YOU to everyone who has contributed thus far.  I am truly humbled and in awe of your love, support and generosity. To those of you who have yet to donate, I urge, I PLEAD with you to consider (even just $1) donating to this worthy cause.  As I have stated in previous posts, we are on our own to find a cure and we cannot do it without you. 

To Donate Now, Click Here: https://www.firstgiving.com/fundraiser/faithzdalton/running-for-answers7

THANK YOU!!!! YOUR THE BOMB!!!! YOUR AWESOME!!!!  

P.S. A Special Shout out goes to Captain Birdseye, Truline Industries and Putman Media for their extremely charitable donations.   

xoxo,
Faith