Monday, July 8, 2013

Houston bound this week.....again!

Three months sure do pass quickly when there is so much going on in these summer months. But this week is the week I will fly to Texas (T-TH) for my PET scan and visit with Dr. Javle.  In months past, my insurance refused to let me have a PET scan and I was given no choice but to get chest x-rays and a CT scan. Dr. Dy in Effingham has already warned me to be a little careful as they will be comparing a CT scan from 3 months ago to a PET scan this week. The PET shows every little speck of anything suspicious but with a CT, it is not as clear or sophisticated. Dr. DY says they can compare the CT scan from 3 months ago to the CT part of the PET scan they do to make it more even in detail.  But maybe I need to know about every little speck to jump on it now and fight it like a dog.....I dunno. I guess I have wanted this PET for so long (that's what I started with until insurance denied paying for them) because it is more detailed but now that I have gotten it approved, I am kinda dreading it. But God is right beside me and I keep telling myself that. It calms my nerves down and off we will go tomorrow to Houston!!

I want to discuss with Dr. Javle, the clinical trial that is being done at all the major cancer centers that is specifically for my two cell mutations. The clinical trial kills the bad cells before they make cancer so my body would quit making the cancer cells as this chemo would kill them off quickly. IF it would work-GREAT. If it didn't work, my cancer could grow. But this trial is just for MY TWO MUTATIONS. That's if it kills off all the bad cells before they have a chance to make cancer cells, then maybe it would start working on my cancer cells in the tumor???  I am not sure of all this but this is the way I understand it.  I would like to ask Dr. Javle to print off (from PubMed) all the info so far on this trial. Both of my cancer drs' are BOTH impressed with the results thus my heartstrings are really telling me to take a chance here. I would have to drive to St. Louis ALOT as they are the closest one doing the clinical trial (this is about a 2 1/2 hour drive for me) it would make for some long days. But some long days in my life are better than no days left in my life.
My drs say that I will not die from my cancer in a round about way of saying it....instead, I will probably die of liver or kidney failure from all the poison (chemo) being pumped into me. My numbers are holding steady in that area but it could all change in a heartbeat. Only God knows that answer!!

So, as I start my week, I ask for prayers for a safe trip (no plane crashes please), I ask for good news that I am stable or the tumor is shrinking. I pray it has not traveled to other areas of my body.  And no matter what, I will come back, go on vacation in 3 weeks, and have the time of my life!  God is good and He is in charge. I will accept whatever the news is and move on to fight the next fight on this journey of cholangiocarcinoma.

Life is all about TIME, so get out there and enjoy it while you can!!

HUGS and More HUGS!!


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