Some Answers...

Before I get too far into this, I want to do a quick update from my previous post before I forget.

Hard to see, but
my ankle was swollen and
bruised from when I
fell at work. 

It was a rough week before I finally started to feel somewhat better after my block.  My legs kept getting more and more numb.  It was the most bizarre thing.  I fell in the shower on Thursday morning and fell going up the stairs at work on Friday.  That was my final straw.  I called the doctor on Friday and she did say that they put such a high dosage in me that it might just be taking my body longer to get used to it.  She wanted me to wait and see how I felt over the weekend and if it didn't get better than would see me in clinic again Monday.  

…..I don't want to jinx myself, but I feel like the block is actually helping!!  I haven't been in much pain and couldn't tell you the last time I had my stabbing pain attacks.  Also…… I HAVE BEEN SLEEPING IN BED FOR OVER A WEEK STRAIGHT NOW!!!!!  I don't know when the last time I slept in bed was!! Also, the new medicine that she had me start knocks me out SO HARD AND SO FAST!  IT'S WONDERFUL to finally sleep.  


Last week I met with a GI specialist.  He thinks the reason I've been so nauseous is related to one of my medicines, Sulindac.  He thinks it is destroying my stomach lining so he added another medicine to my routine.  I take it 30 minutes before breakfast so it will hopefully coat my stomach and help with the nausea.  He also ordered an EGD (where they go down through the throat with a camera and look at the insides) to check the inside of my stomach and see if there's anything out of the ordinary.  He also noticed that my hemoglobin levels are really low.  He doesn't really understand why none of my other millions of doctors have done anything about it.  When I first started at City of Hope, it was at a 12 and the last time I got bloodwork was 9.1.  Nothing has been done about my levels yet, until after my tests.  He wants to go step by step and rule things out first.

Fast forward a week…..

I love looking at my tattoo.
Especially when I am all tied
up to machines. It is my
daily reminder. 

I don't want to jinx myself.  But I am actually feeling well from the block and haven't been near as nauseous.  There's been a couple of nights where I have been, but it hasn't been all day like it was previously.  

I had to be at the hospital at 6:30 a.m. on my only day off this week and had the EGD this morning.  It's really sad when the nurses that work in the area where these procedures/minor surgeries are located get to know you.  This was my second time going under anesthesia in 14 days.  

They saw a little bit of inflammation in my stomach and took a biopsy of a couple areas.  But the bigger concern is with my small intestine. It looks like my tumor is now engulfing my intestine and either pulling or twisting it and kind of making it look like a black hole.  

This is what the small intestine is
supposed to look like...All nice and smooth

But this is what it really looks like...

Again what it really looks like.

I have to get ANOTHER test done where I drink the barium and get X-rays while my body digests the barium.  I am getting this done April 3.  They definitely want me to get this done before I see Dr. Trisal, my main Desmoid Tumor doctor because he is the surgeon and unfortunately surgery might be in the picture a lot sooner than originally planned.  

I'm so thankful for the doctor that referred me to see a GI doctor.  Otherwise I would still be wondering what's going on. But I'm so scared for what is going to happen next.  Trying to stay positive.  My throat hurts really bad right now, too, but I'm sure that is expected.