Tuesday, December 30, 2014

Sitting tight for now......

As many of you know, I had a follow up visit with my Dr in Effingham today to re-check my liver enzyme levels. They are coming down....enough that Dr. Dy thinks I am out of the woods (and can detour going to MD Anderson until February for my scheduled visit).  I have two more days of antibiotics and after that, I will just keep taking a pill 2 X day to calm down my gallbladder/inflammation.

My white count along with my platelets  had went down on my previous visit but they were back up even better than before. Well within normal range....Thanks Be To God!!

My Dr wants to see me back in two weeks. Honestly, my belly still feels awkward/tender. BUT, I have to trust my doctor and give thanks to God for turning these numbers in the right direction. Now, we will continue to pray they keep going down, down, DOWN!

Thank you all for the many texts, calls, Facebook messages.......they really do mean a lot!

Let's pray for continued decline in my liver enzymes and that God keeps making my curvy roads straight!    God is Good ALL the Time....ALL the time, God is GOOD~~~

Have a Happy and Safe New Year!!


Tuesday, December 23, 2014

A small detour in labwork.....

I was back in Effingham today for a follow up with Dr. Dy. My labs last week compared to today  were 
Dec. 17              Dec 23
373                     313
138                     152
57                         98

So, the alk phos is a bit better but the other two (which are of more concern right now) are a bit higher. So, I will go back on Levoquin for 10 days and see if this kicks the infection (presumably in the gall bladder) to the curb. Dr. Dy has two other patients with the exact same thing going on right now that are CC patients of his.   IF I go back on Dec.30 and my labwork is worse, Dr. Dy and Dr. Javle have decided it is time for me to fast track it to Texas. I will possibly see a surgeon to 1. Either remove the Gallbladder or 2. Put in a drain of some sort (I have a problem with 2 because I am on blood thinners and I just don't think that sounds like a good option).  

To say I am a little bummed is an understatement. It makes me SO appreciate how blessed I have been to go 13 months with NO treatment.....to take MANY vacations in the past year, be as active as a "normal" person on most days, have 5 grandchildren CURRENTLY with room to grow. I am beyond blessed in MY life.

May you all have a Merry Christmas!! 

Love and Peace,

Wednesday, December 17, 2014

Every minute, every hour, every day.....I AM BLESSED!

Pat & I traveled to Effingham today for blood work and seeing the dr. I am still not feeling 100%....but mostly ok. I have not been sleeping well....maybe due to napping during the day some and also due to just not being able to sleep.

A couple of days ago, I started getting small bumps on my body (waist to neck mostly) and I thought I had chicken pox although I didn't have all the symptoms. The dr put me on an extra antibiotic (Bactrim) for a Staph infection (I do not have chicken pox after all). I asked several times to make sure I wasn't contagious and they assured me I was not.

Then, the blood work is finally in. It is better....much better...but not within normal range YET. I told Dr. DY I thought I was dying...he assured me I am not dying yet...I have a very angry gallbladder/infection and it has made my liver function tests come back high...WAY HIGH. Let me explain. The normal range for my alkaline phosphatase is between 34 -104. Mine crept up....in leaps each week to 634. My AST should be between 13-39...mine jumped gradually to 235. Then there is the ALT that should be between 7-52....mine slam dunked each week raising to 559!  The ALT & AST are the ones we were most concerned with. This has all happened over a period of about 5 weeks. So...yeah, I wondered if this was "the time."   Before my numbers started creeping, they were Alk Phos 111, AST 23 and the ALT was 34. So....to compare to their highest....they were moving in a direction I wasn't ready for....but are you ever ready for THAT to happen. Today, the numbers were Alk Phos 373, AST 57 and ALT 138. They are still high but going down a lot in one weeks time!  I return in one week to re-check as Dr. Dy is keeping a very close eye on me.

 I thought my liver was failing. I was even laying on the couch in the middle of the night because I couldn't sleep and I saw my Gram (my mom's mom) and she smiled at me and waved. I have heard people saw their loved ones (in Heaven) as they were preparing to die.....was I going there? Was this IT?
Well, I am here to tell you I am NOT going anywhere until God says it is my time....until then, I cling to, I cherish, I praise The GREAT Physician, God, for every minute, every hour, every day!! I AM BLESSED!! I am the longest living cholangiocarcinoma patient Dr. Dy has ever had.....it's not really something to brag about but I just feel in my heart, things are going to settle back down for now.

Believe me, I have thanked God for the people who pray for me, for my best friend, Debbie Weiler, that prepared a meal for Pat & I, for my sister Sarah who came and wrapped my presents with me. I praise God for my husband, Pat, as he is always there with me....right beside me~picking up groceries, fixing meals, getting scripts filled, folding laundry BUT most importantly always assuring me I was going to be ok.

No matter what happens....no matter when "IT" happens, now or in 2 years or 20 years....I praise God for this life. The here and now that I am experiencing with my family as the road starts to smooth out and the bumps in this journey start to flatten out and the dust starts to settle.....I AM BLESSED!!

Wednesday, December 10, 2014

"How Great Thou Art"

The last 3 weeks (actually a little longer than that)  have been a roller coaster and I have pretty much kept it to myself and family. When I went for blood work in Effingham about 3 weeks ago, my liver enzymes were up. I did not see the dr since I was just getting some routine blood work done. I didn't stick around for the results, but I asked them to mail me a copy. After I received them, I noticed the Alkaline Phosphatase, the ALT, and AST were elevated. My cancer marker is normal and my bilirubin is normal (for all you CC patients scratching their heads wondering if I have a blockage) I requested that the bloodwork be repeated that day at our local hospital...and they were even higher than before (that was last Friday). I also had them tested on Monday of this week....and the blood tests were even higher. I have learned that if I wait at the hospital, they have the bloodwork done within 30-40 minutes (and print them off for me)and I can then call my dr and say "Whatta ya gonna do NOW?"   Well, Dr. Dy said he wanted me back at the hospital right then for a CT scan to check for a blockage, new cancer, anything to answer the question of why my numbers keep rising.  The scan came back fine. My mass is even smaller than it was in 2011 from a prior scan they compared this new one to. No answers on the scan. I also waited on the CT report at the hospital so I could go straight home and call the docs to say "What Now?"  After reading scans for almost four years, I may not be a radiologist, but I know what the summary states and a lot of the terminology used in them. I knew the scan was good.

Dr. Dy has dealt with me for almost the whole time I have had cancer....and he knows I don't "sit well and wait."  Today, I had bloodwork at 11:30 and was SUPPOSE to see the dr at 12. Well, at 1:30, I was taken to a patient room. I then waited another half an hour before Dr. Dy came in. (This is about the time my husband comically asked the dr if we needed to pay for a room for the night because we had been there for so long).  Dr. Dy has stated all along he believes it is a virus...maybe even viral hepatitis. I told him I didn't have any of the forms of hepatitis and he states it does not matter....I can still get viral hepatitis....or any virus in my body and it can make my liver enzymes go up...up...UP BEFORE they start coming down  .  Dr. Dy was going to send me to Texas ASAP but he finally had a returned call from the great Dr. Javle from MD Anderson. He totally agreed with Dr. Dy that he also believes I have a virus. I am to stay here in Illinois and rest...rest...rest! Dr. Javle states this is not the first time he has saw this and it will just take time.  TICK...TOCK!  And so I wait........thinking about the cookies I wanted to bake, the presents that need wrapped, the few last minute gifts I needed to get.....but, it will all have to wait......maybe until NEXT year!

As I sat in Richland Memorial Hospital...waiting for my lab results, I thought a lot of what if's and why now's. Then a song came on the radio that put a calmness in my soul that I SO needed. How Great Thou Art was being sung and I felt a presence over me. It calmed me and a few tears slid down my cheeks. God is greater than any of my problems....He is with me, and I just needed to be reminded at that moment who is driving this bus!  God has this...not in my time, but in his. I need to focus my celebration on the birth of the Christ Child.  Yes, Christmas can be a season of great joy! It is a time of God showing His great love for us. It can be a time of renewed strength and healing.  Focus Patty......FOCUS on what really matters this season. The doctors say the numbers will go UP before they ever come down. So, I will wait. I will trust with all my heart that this small speed bump might just be what it takes for me to slow down and enjoy what Christmas is REALLY about. Not the cookies that need baked, not the last minute gifts, not cleaning the house, or even wrapping presents.

I hope you are truly finding the Reason for the Season this Christmas. I am so blessed with family and friends. I know that there is eternal life....and life never really ends. Yes, cancer is not what I would like to be dealing with.....but who would have thought I would be here for ALMOST 4 years since diagnosis. Both of my doctors have admitted they thought I'd be dead by now. All in Good's time.......all in God's time~~~!!

Prayers are truly appreciated as I get over this small bump in the road. I feel pretty much fine except an occasional stomach "blurp" or a little itchy at times. But prayers for my liver tests to return to "normal range" would be the next best thing I could ask for this Christmas.  The first thing I could ask for this Christmas...I already have. It is God standing right beside me. Every day...through it all.

God is Good ALL The Time....ALL The Time, God is GOOD!

May God bless you this Christmas~~