Thursday, March 5, 2015

I Said...... "I'M WHAT???"

Bloodwork is being a little bit of a booger as my phosphate serum is .1 from being able to be in the trial. 3 weeks ago when I was was a whole point within range. But on Monday is was .2 from being within range so we are moving in the right direction. Dr. Javle told me to drink LOTS of water and come back the next day for blood work. It did go down .1 but I need it to go down another .1 to be in the trial. I am eating super healthy and watching for anything with phosphates in the ingredients....or high phosphate foods in general.

There was also a problem with the urine sample I gave them on Monday. It shows I am pregnant. I just laughed at Dr. Javle and discussed measures were taken along time ago to stop that from happening. He insisted we do a blood test on Wednesday (just to clear it up that I am not pregnant at age 50) and they called back this am saying it is still positive. I joked with the dr that THAT is why my belly is so big!" He didn't say anything...he just grinned. He is such a caring, gentle man. I am blessed to have one of the most knowledgeable doctors for CC. Anyway, back to the pregnancy test, (I know a lot of you are laughing your "arses" off...go ahead, SO DID I)!!! I also had the CT scan and it shows nothing to be concerned about-no baby!! Sometimes, Dr. Javle says this happens because of the tumor messing up your body/blood somehow. He has saw this before but it doesn't happen a lot.  We will proceed with the trial once/if we get my phosphate serum down. I will go to MD Anderson tomorrow at 7 am for I..V. fluids and see if we can lower it that way. Right after the fluids, I will have it tested again. Hopefully, it will lower that  .1% that we need and it's one step closer to starting the trial. I will maybe have Friday off as my eye appt. has been moved to next week. even think about a child at my age makes me want to hurl! I just laughed at the dr and said..."No possible...NOT funny...Not happening!"

It is one crazy, busy ride (traffic wise) from Tomball to MD Anderson. Just for toll fees and parking, it's $15.50 or more a day that we travel to MD Anderson.

Pat and I got a copy of the CT scan I had on Monday and my tumor is now 8.2  by 8.5 cm. When we started it was like 11 by 10 cm. One thing amazing to me is that the tumor has totally occluded the middle hepatic vein so it is now all draining via the right hepatic vein. Amazing that it just re-routes and finds another way.

We are headed to the rodeo Saturday with Bruce and Deb Schonert.. Gonna see us some horses, cows, and cowboys....and probably some wanna be cowboys, too. We will also see Alan Jackson in concert. Should be a nice time except the weather is calling for a high of like 48 and chance of rain. Lots of stuff is indoors so it's all good!!  Deb and I made an IKEA trip today and Pat said "No thank you" to that trip.  Linda (the friend)who we are staying with will be home sometime today. We have not seen her since we got here Sunday night....but we are entertaining her dog and holding down the fort.

It's just a waiting game for now....Tests tomorrow after IV's. Next week I should know by Wednesday if I am allowed to enter the trial (based on my phosphate serum level).  I am ready to start the trial as a handful have reported good to great results so far. Only one person has been terminated from the trial. Not just stability BUT shrinkage and nothing new developing. Stable is good, shrinkage is great, and just killing it all would be a dream we hope to find out about with this trial.

I have said it many, many, MANY times. LIFE is all about time.  I will be patient as this journey may be a curvy and twisty road....but I will keep the faith that God is beside me and everything will fall into place.

Prayers are much appreciated and cards are also like getting a dozen roses.  They make my day...that one card with a note inside is like keeping my land line to my family...and my friends.

On a different note, the book I wrote and illustrated has been approved and is being sent to the printer. Then, they will send a proof of a book back for us to "ok" and then we will be anxiously waiting to start selling those hardback books!! Once we have a picture of the front copy, I will post it or one of my girls will.  It is just as beautiful as I wanted it to look. Courtney at Printforce did a super-duper job with the graphics...font...EVERYTHING about it looks great!!!!  All proceeds benefit our ACS Relay for Life Team and the Cholangiocarcinoma Foundation.

God has been so good to me...blessed me with quality time with mt family, and has strengthened my faith and made me realize life isn't really LIFE unless God is in it-FRONT and CENTER! And for that, I thank you, God!



  1. Just love your attitude Patty, praying for lower phosphate levels and also for the pregnancy matter to clear up. What a hoot, to have that revelation, I can't imagine getting that sort of result without fainting.

  2. Lucy~ I can't have any fainting going on.. I feel like all the previous treatments for this CC has made me half brainless anyway! Wen they hooked me p to the I.V. for took 3 pricking and prodding before they go it in right.. It brought back memories of the many chemo treatments.....that kinda wanted to make me hurl, too! I have a calming faith it ill all fall into place!