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.

Fingers crossed...

Getting ready for surgery..
a bit nervous!

Well, I had my celiac plexus block yesterday (Monday).  I'm not feeling as well as I was hoping to feel after.  I had done some research Sunday night/Monday morning because I couldn't sleep because of the nerves and came across a few people who had said they felt instant relief.  So I was hoping for that.  The doctor said that I would feel worse before feeling better and that it would probably be around 4 days before I started to feel anything.  The side effects to this are nausea (oh joy!) and numb legs.  I am keeping my fingers crossed and not giving up hope yet!  

Right now my most pain is in my back where they went in.  I have 2 spots on my back.  The dressing is still on them so I haven't seen it yet.  I'm curious how big it is and if it will scar so that I will be able to continue connecting the dots now onto my back.  Many people collect different things; I have been collecting my arm bands that I get every time I go to the doctor or hospital.  I think I want to add to my "collections" how many different scars/battle wounds can I get from different surgeries.  

I was supposed to go back to work today but I'm not feeling well at all.  My legs are real numb and my back hurts sooo bad.  I am limping and walking real slow when I have to walk somewhere.  I am also very tired because I didn't sleep good at all.  I would sleep for about 30 min-an hour then be awake for awhile, even with taking pain meds! I can't get comfortable and I'm very restless.  I'm thankful that I am scheduled off work tomorrow because I have a doctors appointment, so I don't have to go back to work until Thursday.  This way I can hopefully relax as much as possible and hopefully get some sleep today and tomorrow. 

Tried to show how big
it really is.

Takes up half of my
abdomen

I forgot to post in a previous blog post a picture of how big the Lidocaine patches are!  They're almost as big as my iPad!  I haven't really noticed a difference with them, but I continue to wear it just to be safe.  I have to wear it for 12 hours, take off for 12 hours, then back on for 12 hours, etc.  When I told the new doctor about these patches, she instantly said she didn't think they would work.  But, I am still wearing them just to see, especially if it would start working so that I can get a little bit more relief while I am at work. 

Flowers delivered to work
from my Store Manager
and associates.

Flowers and ballon, dinner,
cupcakes, and VS PINK
hoodie from Luis.

Thank you to everyone who made my 26th birthday so enjoyable!  I know that I was not looking forward to it at all, but it was definitely a good birthday!  Also, on the bright side, I will continue on my stepdads insurance on COBRA which eases my mind a lot!  Therefore, I'll have my work primary insurance and my stepdad's as a secondary for another 18 months!  A HUGE SIGH OF RELIEF!

My pills I take at night. 12 at
night and 7 in the morning.
This doesn't even include when
I take pain pills, either!

I know I said in a couple blog posts ago about how I am nauseous a lot at night.  Well, unfortunately, the nausea has gotten worse.  Especially starting Tuesday night (my birthday) through Friday.  I was vomitting so much and unfortunately still had to be at work and everything.  I had a big breakdown when I came home from work Wednesday night.  I went and changed out of my work clothes and just sat on the bed and started balling.  Luis heard me and came in and asked me what was wrong and was trying to comfort me.  I kept telling him I'm so sick of being nauseous, in pain, and the horrible hot flashes.  He finally calmed me down and made me some toast and I fell asleep.  But, I did tell him that there's no way I can take my medicine that night.  I DREAD taking my medicine every night because it makes me even more nauseous.  It's almost immediately after taking my medicine that I start feeling like that, too.