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