Monday, December 25, 2017

The Holidays

Merry Christmas friends!

I had a scan on December 12th and it shows the trial drug is still working1 There was slight shrinkage in places and stability in others.  No growth anywhere on the TAS120 trial. My liver enzymes are well within range except the Alk Phos but it is moving in the right direction.

I am feeling a lot better but I must not look so hot as I see the "Oh My Gosh" looks from people when I am out and about. I truly do feel wonderful right now! I received an iron infusion due to low hemoglobin (anemic) at RMH but so far have not seen a difference in my labs. Dr. Javle states some people need the second one so I might be doing that before January gets REALLY crazy!

I return for blood work and to see the well known CC doctor on January 2, 2018. And then, on January 13, my four daughters, my son in laws, Pat and I, plus another couple will attend the Andrea Remembered Event in Evansville, Indiana. It will be my third time attending this super fun event! This event has raised more than $495,000 for college scholarships for students attending USI in Indiana. The student must have a parent who has passed to be eligible for the scholarship. Andrea also donates money to the Cholangiocarcinoma Foundation-to date over $200,000! Dan Fuquay started this organization after his wife passed from cholangiocarcinoma. What a gift they have provided for students and families affected by cancer.
After we all attend this event, my life gets a little busy for a cancer patient! On January 18, Pat and I drive to Georgia to see Kate's (my step daughter) boyfriend graduate from Homeland Security School. After a few days there, we will drive straight on to Houston for a follow up appointment with Dr. Javle. On January 27, Pat and I will board a train in Effingham that will take us to Chicago. After a 4 1/2 hour layover there, we will board the train for Salt Lake City, Utah for The Cholangiocarcinoma Conference we have attended the last three years. We will be on the train for about 33 hours from Chicago to SLC!  I have never ridden a train so I wanted to experience countryside views, quiet relaxation of just the hum of the train rumbling down the track, and maybe the occasional chatter of other passengers on the train.  Pat rented a sleeper car plus we are traveling first class. The actual conference in STL starts on Jan. 31 but I am arriving late on the 28th for some training and phone conferences with other CCF staff/volunteers. The Conference ends Feb 2 after many doctors, researchers, drug companies, fellow CC patients hear lots of exciting things in the CC world. After we board a plane in Salt Lake City, we will actually travel to Las Vegas where my stepson, Tom lives. We will visit with him about 5 days before boarding yet another plane to fly home. This leaves us coming home on Feb 7th, only to board a plane again on Feb 11 for a new scan, lab work, and another visit with Dr. Javle.  But my life just keeps getting better! Pat and I have consolidated Christmas, my birthday, our anniversary, and Valentines Day into one big gift to each other with a trip! We will drive to Indianapolis to fly out bright and early on Feb.17  to a Sandal's Resort in Antigua. It will be our second visit to a Sandal's Resort and they are just top notch in my book!
We will return from the trip on Feb. 24 only to rest a week before jetting back to Houston for yet another follow up visit. I have visits with Dr. Javle every three weeks since being on the TAS120 trial. But, it is working so there is no room for whining about all the trips to Houston!

I am feeling better now than I have in quite some time. So....if you see me and think I am looking not so hot, it may be due to the fact I am hardly sitting down on this crazy life of mine!! I thank our God many times a day for the memories and good health I am having right now.  It truly is a miracle that I am still marching here on this earth. God does answer prayers and no one knows that better than me! So, keep the prayers coming as He truly does hear you!! No one knows how long the ride on this trial will take me but I am not going to sit on my perch at home worrying about it! There is another trial my doctor already has in mind for me IF and when this cancer outsmarts the effectiveness of this trial drug.

Life is short....sometimes coming to an abrupt stop! It is the memories we make with our life that make it the best journey. I am in no way perfect or better than the next person. I ask God WHY I am being blessed with more time than most patients with CC. the answer I get back is......WHY NOT?
None of us know why some of us pass without any warning. And there are many times I think it should have been me instead of a young child or mother. I don't 'get it" because I am far from perfect. It tears at my heart when people have passed way too young from cancer or something else. Every day I wake up, I tell God I am going to try to be a better person....only to lay my head down that night and tell God I am sorry I have failed so miserably...again!  But...God already knew I was going to fail.....yet He is still there to listen and guide me daily.
So, I will continue to MARCH in my current life! !! I will be starting my 8th year with this beast of a cancer starting in February!! 

With God, my family and friends, I will make many more memories until it is MY TIME!!

God Bless each and every one of you!!
Merry Christmas 2017!