I’m Beginning To Feel A Lot More Like Faithy Everywhere I Go

Sorry it has been a couple weeks since my last post, but it has been a busy last few weeks….

I had an MRI, a pain management and 3 doctor visits.  Not to mention, I have been volunteering at my daughter’s school, hosting dinners, working and of course being a wife and mother.  

  

Are you on the edge of your seat wondering what the results of the MRI was?  Should I keep you waiting?  Nah that would be cruel; drum roll please…… I am tumor FREE.   Let the happy dance begin!!!

Even better, I am starting to feel more and more like me.  The weird thing is while Shirley was acting up I had no idea I was in such a dark place.  I knew that I was not 100%, but looking back now I kinda feel sorry for that woman who was suffering.  Yes physically it was my body, but emotionally and mentally that was not me.  The Faith I know and love is a funny go lucky smart ass and the woman with the stupid tumor was an anxious sad lady who was always in pain even though she was on a regiment of pain meds that would knock out a small village.  

Before you read on take a guess at how many pain pills I took a day.  Do you have a number in your head?  Great! Read on.

When I woke I’d go to the kitchen grab my pill box and swallow my morning dose of 3 oxycodone and 1 morphine.  When lunch time came I was so relieved that it was finally time to repeat the formula, at dinner, you guessed it another 3 oxycodone and 1 morphine and at bedtime, I toke 1 Cymbalta and an occasional sleeping pill.  I know what you are thinking she is going to get addicted (if she is not already).  Folk’, becoming an addict was/is the least of my worries and while on this cocktail it only made my pain manageable (see: Pain Medication: Are You Addicted?)  so that I could get through the day.  I was ALWAYS in pain.  ALWAYS!!!

Blah! Blah! Blah! Enough of this depressing shit as the title of this post states I am beginning to feel a lot like me again and slowly starting to get back to my life and doing the things I love, cooking, shopping, visiting with friends and family, traveling (personal and work), playing with my daughter and soon I will get my FAT ass back to the gym!

  

I still have a little ways to go to be rid of my daily pain and yes I continue to take pain meds, but a WHOLE lot less.  In fact, I no longer take morphine and dropped down to 2 oxycodone 2-3 times a day (usually 2 times).  They tell me someday I will have no pain; I hope this is true.

I wish you and yours a happy and HEALTHY Holidays Season!

xoxo,

Faith

    

Top 10 Reasons To Be Grateful

Like most people this time of the year I start reflecting on past year; and believe you me I could complain, cry and do the woes me thing but where will that get me?  Most likely my friends, family and you might begin to tune out.  Don’t get me wrong, you’re all wonderful people but let’s face it it would be more fun to walk on hot coals (or stick a hot poker in your eye) than listening to someone complain ALL the time!

I will not lie I am ready to leave 2012 in the dust! However, before I welcome 2013 with open arms I wanted to share the things I a most grateful for in 2012 and I would love it if you would leave a comment with at least one thing you are grateful for:

1.  First and foremost, I am grateful for my family and friends.  Without their support and love this past year could have been a lot worse.
2.  Health.  While the stupid tumor has been a challenge and caused a few moments in my life that I needed to be cautious I am relatively healthy as is my husband and daughter.
3. Desmoid Tumor Research Foundation.  This incredible resource provides helpful information and enables research that would not otherwise exist if it were not for this great organization.
4. Forgiveness and being forgiven.  A very dear friend and I had a falling out and we ended our 20 year relationship.  It was very hard for me to say goodbye to her but thankfully very easy for me to forgive her and I am grateful for her forgiveness and looking forward to starting new memories with her in 2013.
5. My Desmoidian community.  There are many diseases out there where folks are all alone and while this disease is rare, there is a community that I can turn to whenever I need them.
6. Being less judgmental.  This is not an easy task for me as I can be quick to judge but since going through a life changing disease I realized that life is too short to be so judgmental.   I am no saint so this is something I continue to work on every day.
7. Blog.  I am grateful for this blog and the outlet it provides as well as the relationships that have developed from it. 
8. Career.  Not only do I love what I do, I am grateful for the understanding and support of my clients and extremely grateful to my employer for their loyalty. 
9. Medical team.  I am a lucky lady to live in Cleveland, Ohio.  Yes you heard me right, I am lucky to live in Cleveland!  Cleveland has 2 world renowned hospitals and the care that I receive at University Hospital’s, Seidman Cancer Center is outstanding and hands down the best resource around.
10. FREE.  My first MRI post-surgery and I am tumor FREE!!!!!

Happy Holidays!  May you have a wonderful holiday season and a HEALTHY new year!!!

xoxo,
Faith

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. 

. 

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. 

It's Not Just About Me

I am sorry I have been MIA for so long, but since starting radiation and going back to work I have little to no extra energy to do even the simplest of things including writing.  I will do my best to do a weekly entry but I offer no promises. 

This weeks post really has nothing to do with me or my treatments, but rather about 3 lovely women who all have inspired me to embrace life, seek my passions, discover new things and love to the fullest: 

1.       Last weekend, I lost my wonderful friend, Amy.   Amy passed on her 39^th birthday from complications with blood clots.  She is survived by her 2 wonderful children, husband, mother, father, family and a shit load of friends.  She was kind, talented and generous.  In fact, her generosity has provided life to others through organ donation. 

Amy’s passing was completely unexpected. From what I have been told Amy had high blood pressure which was being controlled by medication.  In addition, she was taking birth control pills.  Ladies, I beg you PLEASE do not take birth control pills. BC is filled with hormones that can cause strokes, tumors and a variety of other complications. I am not a doctor, I am not an expert, but Amy is the 3^rd woman (including myself) I know who has had a tragic result do to birth control pills.    

Off the top of my head, I know of 2 non hormonal birth control options, condoms and the IUD, ParaGard which provides 10 years of protections and has NO, I repeat NO hormones.   http://www.paragard.com/. 

It has been years since I have seen Amy in person, but thanks to social media, Amy and I were able to keep in touch and share lifes special moments through photos and posts.  I will miss Amy’s funny whit but I am eternally grateful to have known her.

2.       My colleague and friend, Diane went into the hospital a few weeks ago for a scheduled hip replacement.  During her recovery she developed blood clots.  While treating her with blood thinners, Diane began to have complications with her treatment and sadly they discovered she had cancer which has spread and now we are left praying for a miracle.   

Diane is a true city girl, she did not own a car she rode the train, took taxis and walked everywhere.  To be honest, I am not quite sure she even knew how to drive.

Diane is a very talented writer.  She is a charming lady who is greatly respected for her many accomplishments including her monthly column in Food Processing and her blog on FoodProssing.com, Toops Scopes-http://community.foodprocessing.com/toops_scoops

It has been about 6 months since I have seen Diane and I now wish that I would have kept in better contact with her.

3.       A fellow Desmoidians, Tanya passed away last week at the tender (young) age of 30.  I did not personally know Tanya but rather we found one another on the DTRF Facebook page.   Tanya was an amazing woman who embraced and enjoyed life to the fullest.     

Folks, never be to busy to pick up the phone and say hi to a friend.  Always find time to join your family for dinner.  Save up and take that dream vacation, stop and smell the flowers.  Life is to short, never take it for granted and enjoy every day as if it is your last.    

xoxo,
Faith

Since We Last Spoke

It has been 3 weeks and 5 days since my surgery and I would love to tell you all that I am off the pain meds and the pain is gone, but sadly I cannot.  On the upside when I take the pain meds the pain goes away for hours verses’ making the pain bearable. 

I started physical therapy and that is helping and today, Monday, October 08, 2012  I will begin 5-6 weeks of daily (excluding Saturday and Sunday) radiation therapy.

My surgery on the September 19^th went good, he removed Shirley who was about the same size as my 8 ½ shoe and even though I had positive margin, we are considering this surgery to be a success.  You see, my first surgery I had negative margins and the stupid tumor came back, so this time Dr. Getty said he was going to go in and remove as much as he can without taking too much of my muscle since we (and by we, I mean me) are going to do radiation anyhow. 

Doc did a fantastic job in fact he removed the big ugly scar from my first surgery on September 14^, 2011(I would tell people that I got my scare from a knife fight. That’s how big and ugly it was, but I digress) and replaced it with a beautiful new scare. At bottom of this post you will find a picture of 2011 scar.  Warning it's kinda gross.      

I spent a lovely 2 nights in the hospital this time on floor 6 of University Hospital’s newly revamped orthopedic floor where every room is a private room, THANK G-D!!!!  I am sorry but when you are recovering you should not be subjected to sharing a room with anyone else!!!!  And when I run for president this will be my platform; that and free ice cream for everyone.  Sorry, I digress again but I live in a swing state (Ohio) and we are subjected to this crap of false promises all day everyday….

Back to my hospital stay, University Hospital was very nice, but I have to say Seidman wins hands down for patient care.  The care at Seidman is like sitting in first class and while UH does a great job (every nurse I had was fantastic) I had one nursing assistant who clearly needs retraining and a new sensitivity chip installed.  But overall, everyone took superb care of me.  I did not have to wait very long for someone to attend to me when I requested assistance and the nurses absolutely were concerned about my recovery, not to mention, the food was pretty good. 

Seriously, one awesome benefit that the hospital provides is extending food service to patient’s family and friends at a very reasonable cost.  On my second night in the hospital my husband and daughter joined me for dinner and at just $6 ea. they could order off the same menu as me (and as much as they wanted).  My daughter loved it, and I loved it because it made the experience less scary for her.

When I got home the outpour of support was amazing.  My neighbor and beastie had a welcome wagon for us including balloons and dinner, another friend made us dinner which included my daughter’s favorites, meatloaf and mashed potatoes.   My employer sent a wonderful care package from Harry and Davids and everyone, I mean everyone contacted me in some form (phone, email, text, Facebook, etc.) sending their best wishes and prayers for a speedy recovery.  And for that I SAY THANK YOU!!! 

I would like to send a special THANK YOU to my husband, daughter, mom, dad, sisters, nephews and brother in laws who have supported me with their unconditional love and willingness to be there whenever I need them no matter what.  THANK YOU, I LOVE YOU ALL more than you can imagine.  Your kindness and support means everything to me and I don’t know how I would manage without you. 

xoxo,

Faith

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

The Battle of the Bulge

For as long as I can remember I have struggled with my weight.  My entire life I have carried around a spare tire.  I struggled the most in grade school and it did not help that my name was Faith….Think about it… Fat Faith.  This was my nickname for a select few jerkies.  I am not trying to paint a sorry for myself picture, I had a great childhood and by the time I hit high school I had lots of friends but I was still chubby. 

Skipping a head to today, I am a confident woman with an extremely good looking and loving husband, fantastically funny and bright daughter, successful sales career with wonderful clients, the best family, friends and colleagues a girl could ask for and yes I still have the dreaded spare tire.

 About two years ago I had had ENOUGH!  It was time to take this weight issue seriously. I was not getting any younger and my family’s heath history insists that I must get slimmer if I wanted to stick around for a while. With that, I started to wean my family off of processed foods (2 years later and my husband is still craving partially hydrated foods), I cook healthier foods and started working out an average of 5 days a week.  My heart, mind and soul were reaping the benefits not to mention my health screening numbers showed these life style changes were indeed working.  I FELT GREAT!!!  I was not supper skinny, but comfortable and happy, in fact my bones were popping out of my back (so I thought).  NEVER in my life had my shoulder blades been visible and I was so so happy.  I could not wait for my husband to notice…

3 months later (typical man), I said “Honey look my bones are popping out!”  My husband was quick to tell me that shoulder blades do not sit on top of the shoulder.  I was scared what could it be? It felt like a bone. The next day I went to my primary doc who said it was nothing but a Lipoma and he could send me to a plastic surgeon to remove it. Being cheap and not very vain I passed on the plastic surgeon.  Another few months went by and I had a doctor appointment this time with my OB.  Since the lump was kinda hurting I brought it up to him and he spent most of the visit fixated on it.  He told me he was no expert but he did not believe it was a Lipoma.  Lipomas are soft and mushy and this was has hard as a rock.  Thanks to my OB that same week I had an appointment with an oncologist, a week later I had a biopsy and fired my primary care doctor. This was the beginning of a new chapter in my life. 

I will not bore you again with the entire surgery part of my story (I already did that with my diagnosis post), but I have to share the following before I can continue discussing my spare tire. 

Once I recovered from my surgery and had my life back, I got right back on the wagon and continued my workout regimen.   While I was feeling good I did start to notice a little bit of pain in my right shoulder but chalked it up to scare tissue. 

Enter the ugly black cloud.  My next MRI confirmed that the stupid tumor was back.  This time my oncologist/surgeon suggested rather than just going back to the operating room we try other treatments.  I met with my another doctor on my team who suggested we try Tamoxifen.  Tamoxifen has shown to help shrink these tumors.  The side effects of this drug included hot flashes, blood clots and possible weight gain.  Really weight gain???  I worked so hard to lose the extra pounds and was determined that weight gain was not going to be my fate.  I continued to work out (to a modified routine), but after a while I started to notice my muscles and joints were throbbing and hurting and the more I worked out the worse the pain got.  I simply could not take the pain and I stopped.

 Fast forward 3 months, I am 10 pounds heavier, the Tamoxifen did not work and the tumor grew.  And though I gained weight my mind is in a good place.

My new chemo therapy (Gleevec) also has side effects including water retention and a slew of other things but the good news is I am able to walk around the block with no pain.  Yeah me!!!  I am also working with my pain management nurse who is going to set me up with The Gathering Place a wonderful nonprofit organization in Cleveland, Ohio that offer a slew of services to cancer patients including a gym and trainers. 

It’s likely I will spend the rest of my days fighting the battle of the bulge but the truth is I have bigger fish to fry.   

xoxo,

Faith

Awareness

About 10 years ago I had an Adnoma on my liver.  The good news was it was not cancer the bad news was it was the size of a grapefruit and I needed surgery.  This scared the hell out of me!  What if I did not wake up? What if there was a complication during the surgery and I died? What if??? What if??? What if???  To help me coupe with my fear I decided to talk with a psychologist.  As I sat there crying in his chair, I remember saying to him "why me?" and his reply I WILL NEVER EVER FORGET, "why not you? Shit happens to everyone!"  These words might feel a bit insensitive but I needed to hear them and ever since they have been embedded into my psyche like a permanent tattoo.  

This brings me to my point because shit does happen to everyone it is our duty not to roll over and play dead, not to blame others for our misfortunes but to create awareness, become teachers, grab the (proverbial) bull by the horns and FIGHT!!!  It is your responsibility and no one else......

Recently Rosie Odonnell's girlfriend, Michelle, was plagued with the same disease I have.  While I am sad for her, I am grateful to Rosie for shinning a spotlight on this rare condition and creating awareness.  She posted a beautiful poem on her blog that describes the torture Michelle went through prior to being diagnosed: http://rosie.com/page/2/.  That next day, I noticed Michelle was trending in the top 10 yahoo list.  WOO HOO!!!

Last night, I saw a video featuring another desmoid victim, Kevin Reilly.  Kevin was an NFL player who had the unfortunate luck of developing this stupid tumor causing him to lose his arm, shoulder and ribs, but Kevin did not cave in but triumphantly pulled himself up and is now a motivational speaker.  Here is Kevin's video...It is worth the 10 min.

Folks we are all plagued, weather it be by cancer, desmoid, drug abuse, sexual abuse________ (fill in your plague).  These are the cards that we have been dealt.  The question is how will you overcome your challenge?

For me, I will continue this blog, I will post on the DTRF Running for Answers Facebook page as well as Desmoid Tumor Research Foundation (DTRF)  Facebook page; and continue to connect and support my fellow desmoidians.  I also continue to ask for your financial support  (even just $1) to help find a cure for this painful desease.  Donate HERE. 

Xoxo

Faith

P.S. Desmoids are Sarcomas and there is a petition that is going around that I am asking you to sign.   The petition urges your states representatives to support the designation of July as the National Sarcoma Awareness Month.  This random act of kindness is one huge step to creating awareness for Sarcomas and with awareness comes funding.  Please sign HERE

Please Don't Hug Me

I am a girl, a woman, a chic but as a frequent flier of the F Bomb some folks might not call me a "lady".  I like necklaces, purses, bathing suites that tie behind the neck and bras.

Recently, I was out for a fun night with my mom and a close family friend.  I looked WAY cute, I had my new retro necklace on (retro because it came from my mom's vintage collection) and my pretty little yellow purse (the kind that barely fits a credit card).  Well let me tell you, I WILL NEVER MAKE THAT MISTAKE AGAIN!!!!  The pain shot from my biceps up to my neck, across my shoulders and right there in the museum the tears came uncontrollably.  Of course I excused myself, but it was this night that I knew  my life was indeed different and that I needed to make some changes, SO...... No more necklaces (for now), no more purses ( I am thinking of designing cute fanny packs), the bras went long ago (don't worry, I did not go hippie I wear fitted tank tops) as did the tie behind the neck bathing suite (traditional suits are not much better, but they'll do for now). 

I also learned another valuable lesson.  Hugging is O.U.T.  When people hug me they always (and never intentionally) pat the stupid tumor.  So the next time see me offer me a kiss, a handshake or a high five.

Peace out.  Have a great day! 

xoxo,
Faith 

Diagnosis

I decided to write this blog as an outlet for me and to journal my progress as well as share my daily/weekly experiences with you.  I also hope to create awareness for this rare disease that affects 2-3 out of a million people a year. If you'd like donate to help find a cure please do so to the DTRF foundation (Desmoid Tumor Research Foundation). 

The worst news my doctor could have told me is that I don't have cancer.  Sounds kinda funny I know, but if you walked a mile in my shoes you'd understand.  You see the disease I have mimics cancer in every way except it does not metastasize and likely will not kill me.

When I was first diagnosed in August 2011, I was very relieved not to have cancer.  When I thought of cancer, I thought of hair loss, pain, chemo, people staring, death.  Let's face it cancer SUCKS!!!  No one wants it.

So what is this bloody thing, desmoid/ fibromatosis the cells involved with the formation of muscle, fibrous and nerve tissue. Desmoid tumors, also called aggressive fibromatoses , are locally aggressive. This means that they can grow into and even destroy adjacent normal tissues, even bones.  They have a high recurrence rate and there is no cure.  WOO HOO, Lucky me, I don't have cancer.  HA!!!

Discussing my options with my dr (chemo, radiation or surgery)  I opted for surgery because if we could get rid of it (all of it) then it had a high probability of not coming back. 

The surgery on Sept. 15, 2011 went great and the care at Seidman Cancer Center was AMAZING.  Recovery was not to to awful and I was back to work 2.5 weeks later.  When I met with the dr. after the surgery he said all margins accept 1 came back clear, but the results for that margin had a positive and a negative reading so my doc, the tumor board, radiologist and I decided that all looked good and there was no good reason to do radiation.

My 1st post opp. MRI in December of 2011 came back clean but by March 2012 the stupid tumor was back.

Now, don't get me wrong I am grateful this stupid tumor will likely not spread and that I probably will not die from it, but this is CANCER!!  I wake up every morning take my pain meds, by mid afternoon I need another one and at dinner I take my Gleevec (and this is after 3 months of being on tamoxifen both are chemo drugs) and possibly some more pain meds, some other misc. drugs and at bedtime, you guessed
it more pain meds and sometimes a sleeping pill. 

Now this is a very sad picture I have painted for you, but surprisingly I am ok.  For all of you that know me know that I do not go down with out a fight.  I feel lucky to have the best husband, mother, father, sisters, daughter, and friends a woman could ask for.  Their support is amazing and without them my days would be very dark. 



xoxo,
Faith