Wednesday, August 22, 2012

A small bump in the road.......

I went for lab work on Monday to check my white count and platelets. I thought my white count would be low as I had four cold sore on my top lip and a sore throat from sinus drainage. It was 2.4. It should be atleast in the 4's to the 10's to be within normal limits. My platelets were 89,000. They should be between 130,000 to 400,000. They are low but I will probably still get chemo. Then I get a call that Dr. Dy wants some additional blood tests ran so I go back to RMH lab to get stuck again. NOW (the next morning) my white count is 1.8 and platelets are at 81,000. Anytime the white counts drops into the 1's...the lab has to automatically call the dr asap to alert them. I never received a call from the dr so ......hmmmm. They will probably just give me a shot when I go for chemo to make my body make the white count jump up faster.
I just wish things were calm and my blood was not so finicky with the chemo/cancer running through it.

I am still exercising probably 4 days a week. Pat and I walked a little over 2 miles this am. It feels so good to get out and walk briskly in this crisp weather. When I walk so brisk, sweat so much from walking, I ask myself...."are you sure you're sick...."  As I walked out to get in my car this morning, the air was so fresh....I stopped and thanked God for letting me have the opportunity to be stable enough to go to work and to also take in that fresh, crisp air.

I have been painting alot recently....maybe I will take pics and put a few on here soon. When I say I am painting...I am watercoloring. I like watercolor because you have wiggle room and they do not have to be perfect. I find peace just sitting at the dining room table, looking out the patio doors and sometimes I spend hours painting ONE picture.

The chemo drug I am on - Irinotican (Jourdan Kuykendall Laughlin says in pharmacy school they talked about that drug and she remembered it by saying "I run to the can"...too funny). Another small but not at all concerning side effect to me is I have thinning of my hair and boy is it ever thinning. When I did the radiation, afterwards my hair was growing at an alarming rate and it was all curly when wet. I had new hair coming in all over my head.....now...it is all leaving. I wear it very well all over my clothes. Who really cares....I don't. I won't go bald...just thinning.

I see my cardiologist on October 1 (in Effingham), then leave for Houston on the 2nd through the 4th (Jenn will fly with me). There, I will get the usual PET scan and report from the dr. Pat will be gone on a hunting trip which I told him to go ahead and just go...no matter what the results, we will deal with it.

My mom said she did not like my last post very well and wondered if I was giving up. WHAT?  I am not giving up....but when your doctors tell you that you are terminal...you humanly think about things like I put in the last post and I think it is just normal. If God wasn't right beside me, I know I would not have lived through blood clots ALL OVER my body that put me in the hospital for over a week and a half. PLUS, I was told by the e-room in Olney and one guy who drove the ambulance (to Springfield) the night/day of my brain bleed/stroke that I really should have died. God spared me all of that as far as remembering much. I don't even remember the pain but my family says I was in alot of pain until the hospital had it under control. I had blood clots last November and was in Springfield for two days but my dr opted to hold off as far as doing surgery...and guess what....all clots are gone. I am on blood thinner shots 2 x a day to keep me from getting clots.

I pray to God every morning and every night thanking him for my life and being able to enjoy HIS creations on this earth each day. No....I haven't given up by any means. I have just put it ALL in God's hands and let him do what is the best plan for me. Yes, I ask for a miracle almost on a daily basis...but I also believe that not everyone gets their miracle to live on this earth, but they get eternal life. I have accepted this. I have faith God will always be there....always! God has gave me a slow growing cancer for a reason...to spend more time right here on earth with my family. AND the more time I am here on this earth....the more time for a cure or longer survival rate.

I thank everyone who even thinks of me or prays for me. I had a call from a lady in Texas (her husband and Pat had already hit it off in the waiting room and exchanged phone numbers)...as she was going into the radiation room at MD Anderson and I was coming out from already getting radiated. She made a comment about having liver cancer (her tumor is bigger than a football and wrapped around the vena cava) and I stopped dead in my tracks, pointed my finger at her and said Cholangiocarcinoma? And she said (in her Texas accent) "well yes honey, how did you know that?"  I told her I didn't know how I knew I just did. (I believe God was involved...yip...I am sure of it). We talked for a bit before she was pushed into the radiology room. That Danna & Travis have a schedule to keep and they are dang good at it!  Anyway...this lady told me that when I walked out of the radiation room, she felt I had total control of that whole room in a way she had never seen. That the room just lit up when I walked out of it...in a way she couldn't explain. She says God has plans for me...she just knows it. She says my positivity was uplifting (it is not always like that) She told me about a new machine MD Anderson is trying to get FDA approved for use on pancreatic and liver cancer. It is called a Kanzius machine. The machine has been used on animals up to 800 pounds. Would that be the most awesomest thing ever! Sign me up as a guinea pig right now. All you cholangiocarcinoma friends can Google it and find out more about it.

So...as I close, I want my family and friends to think about dying in a different way. Sometimes when a person gets close to dying, they are in severe pain, they are not living a good quality of life, they might be bedridden and need full 24 hour a day care. Maybe they are comatose. Do you want them to live because you need them there for your own selfish reasons? There is a better place. When my dad died, I did not weep(until later), I ask God to take him and let him be rid of all misery. Yes, it was hard but I knew my dad...the one that lived and breathed his grandkids, biscuits and gravy, hot chocolate pudding with marshmallows in it...he wasn't really there anymore. So I felt relief when God took him. I knew my dad was happy atlast when we buried him. I guess I am at peace that IF I don't beat this beast of a cancer, I will die knowing I am going to a better place. THAT is so calming to me. It is not the end.....it is happily ever after life on earth.

Please pray for building better blood test results to safer levels, this chemo being accepted into my body a little easier, and good results in Texas. Stability is my favorite word with my type of cancer. I love all you prayer warriors and thank God for all of you each night. God bless you all!!

HUGS & Prayers!
Patty


5 comments:

  1. Patty as always my thoughts and prayers are with you and your family. Your faith in God and love for your family is a true inspiration to all of us.

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  2. Patty, God isn't even close to being done with you, you are way to powerful writer and inspiration!! I hope you never grow tired of hearing what an amazing women you are.You inspire me to be a better person!
    POST your art work soon!!
    Lots of prayers and HOPE!!!

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  3. You are exactly right momma!! There is a MUCH better place waiting for all of us, if we are willing to confess with our mouth and give our lives to Christ! Keep your head up and know that God is by your side! I love you momma! You are MY hero!!
    A

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  4. Suzette StavrianoudakisAugust 22, 2012 at 7:01 PM

    Patty-we will be praying for you in California. I will light a candle every Sunday for you!!! I always thought you were a special person in highschool. I'm glad I found you on facebook 30 years later. Your journey has inspired me to appreciate everything and everyone around me. What a light you are!! Love , Suzette Stavrianoudakis

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  5. What an awesome post Patty. I pray for you everyday. God has a handle on this of that I am sure. Have a great day.

    Christina W (ERBA)

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