Thursday, November 21, 2013

My visit with Dr. Javle

It started out a great day....turning in our keys to "the tin can" and driving to MD Anderson and talking with Pat how this was such a pleasant trip compared to 16+ months ago when I had radiation. Feeling so blessed as I met Danna Grisso Cowly (another CC patient younger than me). We didn't get to visit much due to me having the first appointment of the morning but it was still nice to see her.

On with the visit. I officially have two months off from seeing dr's but I do need to get lined up for my blood test (every two weeks) so I can monitor my blood and how thick/thin it is. No more radiation...no chemo....just enjoy the holidays and try to lose some weight!

Dr. Jave stated how well I seemed to be doing and I said..."tell me Dr. Javle....from the time a cholangiocarcinoma patients sees you for the first time at diagnosis...to the end of their life...what is the average time a person lives?"  It didn't take him 3 seconds to answer "No more than a year in most cases." He then state..."but you...you're like a pioneer for cholangiocarcinoma....you've been here for 33 months."  We talked about how Mayo Clinic and MD Anderson have actual research labs now JUST FOR cholangiocarcinoma. This is HUGE...and pretty recently that it happened.  There are now Registry's that keep track of patients....

Dr. Javle was astounded that my blog was up to 89,000+ hits....I also told him our Relay team donated money to the Cholangiocarcinoma Foundation for the past two years.
So......if you have CC and think....what is Patty doing different? I can only say that my faith has grown so much and also the circle of friends/prayer groups that pray for me throughout the U.S. is astounding.  From Kemah, Texas...to Holy Ghost Catholic Church in Houston....to New York...Illinois....I can't even begin to name the states that prayers are coming from.

I try to eat a little better...then I have a bad day and eat not so good. I exercise...but not like I did before my diagnosis. I don't drink enough water......so I am not doing anything THAT extra but I am still here on this earth. I am not big into supplements....I do eat dark healthy chocolate when I think about it. All I can say is prayers do work.....and the fact that God has guided me to the best place in the U.S. for treatment. I prayed in the beginning of this cancer journey for time...more time with my family...and that I had no pain for as long as possible. I have been SO blessed to not have pain and I am living longer than most CC patients who cannot get a transplant/resection. My blood work shows excellent kidney and liver function. Dr. Javle states I have no jaundice in my blood (which is common in this cancer). My alkaline phosphatase is 2 points from normal range. My CA 19-9 (cancer marker) was over 800 when I was first diagnosed....now it is like 14. That is in the range of a person without cancer. BUT.....even if the radiation works and stops this little part of new growth.....I will still have cancer. I still have a few cancer cells in my body (just not active.... and it will just be a guessing game as to WHEN or WHERE it will pop up again. Dr. Javle states I have a chronic disease. And that we will treat it as it comes.....whenever and wherever it pops up again. The liver is one of the hardest organs to shrink with radiation....with my tumor from radiation 16 months ago...it just became necrotic...which means dead...but as I said, then a little new piece started to grow (off the old tumor)...so we cooked it this time. It will be a waiting game until January to see if it worked. Even then, it might be a little too soon to tell.

So.....the journey marches on. I will march to the beat of a drum until January. I will praise and thank Him every day!

 Within 24 hours of being home, I have saw all 4 1/2 of my grandchildren. I have saw all five Cummins/Corcoran girls. I have seen my mom as she brought supper the day we got home with a coconut cream pie. I am blessed beyond words. My cup runneth over.......and I will not complain nor do I have anything to complain about. I understand all things happen in God's time...not ours. So many good things have came from getting this cancer.....Did I wish for it? Goodness sakes no, but it is in me, the more time I ask why...I say why not me. No type of cancer is like going to an adventure park....but it is what it is. I refuse to take whatever good days I have... to have pity on myself. And at the rate that God is answering prayers on my behalf, there's no guessing at when the day I take my last breath may be.

May God be with all of the CC patients...and all cancer patients. May God be with each and every one of you this Thanksgiving...and every day in between!

Peace be with you~~
Patty Corcoran

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