So I'd like to start this post by saying if you or anyone you know has had a caringbridge site and had to post updates, you know there is a lot of thought that goes into them.  We don't take these posts lightly.  We try to keep our family and friends updated the best we can.  We try to cover all the bases.  We do this because we know you genuinely care about us and want to know what is going on with our illnesses.  For my fellow cancer fighters you know exactly what I mean.  

Cancer is draining, and trying to fight it is just as draining.  However I know why I am fighting and I will keep going and going.  

On Easter Sunday Mark and I traveled to Houston bright and early.  We arrived from the plane at 2pm the exact time of my first appointment.  (Keep in mind as you read this I had no food from the night before).  I went in to get my port accessed and then had to go at around 5pm for my CT scan.  I arrived at 5pm for CT scan and had to drink the contrast, then wait 2 hours to go into scan.  Luckily they got me in early at about 6:30pm.  Scan was about 30 min long.  I was then able to have Easter dinner with Mark at about 7:30pm.  Unfortunately it did not stay down, because I think I ate too many things my body was not used to, such as potatoes, rice, etc.  

Monday morning starting at 8:30am I had to get an echocardiogram & electrogardiogram. Afterwards I went to the hotel to meet with Mark (mind you the whole time I have to go to all appointments alone).  When I got to the hotel room around 10am I rec'd a call from Sara with the trial.  She said the CT scan showed I had almost a complete blockage in my colon and needed to go to the emergency room asap.  I had to then walk back over to the hospital and check myself in.  We tried to get Mark in, but they would not let him.  I went to emergency and after about 4 hours the said I needed to be admitted.  I spent the night at the hospital and was put on no food or water in case they needed to do surgery.

Tuesday I ended up waiting until 11am to be brought down to get a AUGMENTATION MAMMAPLASTY W/PROSTHETIC IMPLANT (basically a mini colonoscopy).  I waited once again in the prepping area for 2 more hours.  (remember I still had no food or water at this point, and it had been over 30 hours).   I went up to my room around 4ish and waited to hear anything.  They finally came back and said maybe I would need a colostomy bag or possibly a stent in the colon so I could go to the bathroom.  My constant concern was however when I would get my liver biopsy to start the trial drugs.  We ended up having to extend our trip and flying my friend Angie to be at least at the hotel waiting for me, since Mark had to leave for a work trip.  

Tuesday night late Dr. Meric the one running the trial, called to tell me unfortunately the trial people said I was no longer a candidate for the trial since my bowels were not working properly. I begged asking about a stent so that I could still go to the bathroom and get the treatment.  She said unfortunately that would not work because stents get clogged too. I then called Mark on 3 way with the doctor.  She told him the same thing and said I should just go home and have the regular conventional chemo.  Basically giving up on me.  Mark persisted and said please to ask the board if the would consider keeping me on the trial with a stent.  Dr. Meric said she would bring it up at the board meeting.

Wednesday morning at 10am Dr. Meric called again and said she presented me to the board and the unfortunately still said no.  We asked what if I got a colostomy bag so I could pass stool, she said unfortunately no because the colostomy would take 4 weeks to heal and by then my liver could be non functioning (which is required to be allowed on the trial).  She apologized and then we ended the conversation.  

I immediately asked to be discharged and was discharged at around 2pm.  I switched our flights to get the hell out of Houston at 6:55pm.  Angie and I had a nice lunch, she gave me a massage and we were home at 11pm Wednesday night.

Disappointment is an understatement.  Anyone close to me knows the arrangements I made to make this trial and the anxiety I had. And the complete crappy part was we truly believe my bowels changed because I stopped taking all the good supplements to support my gut.  

So we are onto the next treatment.  My team is already researching what we will be doing.  We met with Dr. Alqwasmi today and he is going to order the stent procedure asap, just to make sure I will be able to pass stool.  

I have to believe there is a reason the trial got cancelled.  I was being protected from something.  

(I apologize for the long post.)