Some Good News...

Sorry in advance if this blog post is all over the place, I blame it on the pain meds.  I am also going to apologize in advance because I can't guarantee that it will be a 100% positive post.

I had my 10th month of treatment CT on April 10.  I found out that Dezzie has shrunk a little bit (but I'll take any!) and that it is NOT taking over my small intestine, like previously thought.  So that is great news!  Therefore I will be staying on the Tamoxifen/Sulindac regimen for awhile.  I'm kind of frustrated because I am soooo sick of the hot flashes!  But, I know it's really the least intense of treatment, so since it's working it's best to stick with it.  

My main tumor oncologist told me that he's never seen results like I am having with the Tamoxifen/Sulindac.  He originally didn't agree with me having a hysterectomy, but he says now that he thinks removing my ovaries has been the best thing for me.  When I saw him in December he told me that my tumor wouldn't shrink all the way and that I would eventually need surgery to remove Dezzie.  However, he says now that it is possibe that it may shrink the whole way.  He really can't believe the results I'm having.  It's great to hear him say this.  The reassurance is definitely appreciated because it definitely wasn't an easy decision to have the hysterectomy.  

I still have my moments where I get all mopey and sad.  It's just hard to believe that I'm now 26 and I don't fit in with most other 26 year olds around me.  I know that I am pretty open about Dezzie on Facebook and Instagram and by having this blog, but when I'm at work I keep it to myself.  I don't want people to have "pity" on me because of this.  There's several people that I have gotten close to at work, but not comfortable enough to share all of this with.  I just feel like I'm so different than most people around me.  But, at the same time, I have gotten closer to others because they have similar stories.  I am thankful for that.  

I'm so fed up.  I don't understand why I feel like shit.  One of my doctors asked me what was on my mind the most.  I told him that I'm sick of being in pain and not feeling good.  He told me that he didn't understand why I'm not feeling well because Dezzie is shrinking.  I kind of chuckled and said NOONE DOES!  I'm just frustrated.  I can't tell you what I would do to feel GOOD again.  Not only have I been in so much pain, I've been nauseous and throwing up.  I just want to feel "normal" again.  I try to go and do things after work or have a life, but I don't have energy.  If I do too much, I am in so much pain and pay for it later.

I am having another pain block on Monday (April 28).  I can't wait!  TWO. MORE. SLEEPS!!!  It worked so well the last time that I'm excited to get another one done.  I know what to expect now after this one, too.  They said that they won't put as much numbing medicine in this time since it took awhile for my body to get used to it.  I can't wait to get it.  The pain is so bad again that I'm back to sleeping in a chair.  I'm not going to lie, I took sleeping in bed for granted before all of this happened.  One of my other doctors said that it is very normal to have to get the first 2 or 3 right after each other, but then my body should get used to it and not need them as frequently.  At this point in time, I'm just thankful that found something that is working; therefore, I'll continue to get them done as often as needed!

On another note….

I am planning to travel to Philadelphia in September to participate in a Research Sympossium about Desmoid Tumors and a 5k. Since Desmoids are so rare, the only money for research is from what we raise.  "Team Kayla" will be representing!  Please consider making a donation to support me….or come to Philly and participate with "Team Kayla" if you can! :)  The more the merrier!! http://www.firstgiving.com/fundraiser/KaylaBrooker/2014RFA  



….finally pain meds are in full force now! Time to relax now...