Sunday, April 14, 2013

What lies ahead for me?

As Amy reported on the last blog post, my report from Houston couldn't have been any better UNLESS they would have said it was shrinking or dying.......BUT it is still stable, not growing, and my CA 19-9 dropped from 56.11 to 26.56 (in just three months time). That means it is within normal range of a person without crazy is that?  I asked the Physician Assistant what happened if I came back in 3 months and it was zero? Would it be dead? Would it THEN start to shrink? She said I would still have the mass inside my liver but it would be non-active.The cancer would put less antigens in my blood....but the mass would still be cancerous. BUT STILL CANCEROUS. The PA thought Dr. Javle might change his plan of action at that point. But right now since this Irinotican is working so good, they will keep me on it.
My spleen is slightly enlarged and has been for some time. My platelets have been dropping after chemo. The spleen sequesters some of the platelets and that keeps the platelet count from coming back as quickly. If it keeps being a problem, they could embolize the spleen (if the platelets stayed below 50,000 for a long period of time). Not a big deal and you can live without a spleen. My kidney function is normal, and the liver is showing a very slight damage to the liver....probably from all the chemo. He is not concerned with it but says to stay away from Tylenol as much as possible, stay away from fried foods, exercise atleast 1/2 mile a day to build lean body mass, stay away from alcohol (which I do anyway). White count is 6.7 which is within normal limits of a healthy person. My alkaline phosphatase is high at 203...not so good since the normal range is 38 to 126.

So, I believe the next visit to Md Anderson will be when they will want me and encourage me to go to St. Louis to start on a clinical trial. Dr. Javle talked very highly of the trials for my two mutations. I kinda feel like I'd be a lab rat but if it is what I have to do to stay healthy and at a high function as far as living, I will do it.

July1, I have decided to retire from my job of almost 18 years at Embarras River Basin Agency, Inc. I just want to enjoy life before I would/if I would start to go downhill. I don't believe in BUCKET LISTS....they seem like "end of life...hurry up and do it" kind of lists. I just believe in quality time with family, friends, and to be able to take a week off to go wherever Pat and I want to go. Heck, we might get brave and take mom to Niagara Falls this fall....don't pack your bag yet mom. My sister Sarah is off on Fridays and we can go rummage in antique stores or go flower hunting if we please. Or if "The Beach Girls" want to go to a fire in the country to see if the firemen need any help, we can...and already did that! :-)    If we wanna go 110 on a country road...we can. I want to donate some time back to the community, maybe be a Big Sister....volunteer at a food bank, plant flowers for the city.....I just want to enjoy what time I have left...or if God has a longer plan here on earth for me....say another 20-30 years.....boy the list I could make. My list is more about living...not about dying. I have faith that God has a plan for me and it's not going to end anytime soon.

People say I inspire them....pooh! People who beat this disease are the inspiration that keeps me hoping for a cure. Lauren Kunklier is inspiration for us CC patients. She has had one surgery and awaiting a second to take "the bad part" of her liver out so she would hopefully be cancer free. The more people who beat our type of cancer, the better odds for funding clinical trials and a cure. And if I have to be a lab rat to help find a cure, so be it.

When I was little, I was taught to STOP...LOOK....LISTEN....and now 40+ years later, I STILL STOP, LOOK, LISTEN AND THANK GOD for all the wonders in this world. I live in a woods and I can just STOP and LOOK out our extra large windows, open the patio doors, and LISTEN in amazement at the spring that has sprung, the birds so happy to have warmer weather, people just seem happier to be able to get out and enjoy the day that God has made for us. So.....get out there and enjoy the day...forget about the little gripes in really don't know when your expiration date is going to be stamped on your own foot!

Hugs and more hugs to you all!!

God Bless~~


  1. I would like to contact you, or you contact me. I just returned from MD Anderson last night. It was my second trip. I should return again July 17, 2013. I also have Cholangiocarcinoma with liver mets. I am also on Facebook ( Thanks!

    1. I will be at Md Anderson like....July 10 and 11. Just missing each other...dang-it! I am also on Facebook under Patty Stoltz Corcoran. I will email you now and then you will have my e-mail address. Hugs to you as you battle this crazy disease. Patty Corcoran~