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