Saturday, January 17, 2015

Live Like you Were Dying......EVERYDAY!!

I had my dr visit this past Tuesday to see how my liver enzymes were doing. Two of the numbers (The AST and ALT) were almost back to normal within a few numbers. The alk phos is still high but of less concern per Dr. Dy.  I asked him if it was ok to leave Thursday morning for St. Thomas for two weeks and he said "Go, Get out of here! Have fun....and WHY wasn't I invited!!"  I can sit and worry about my bloodwork....or I can go to St. Thomas and worry about shark bites....and I DO! ;-)

It's a long flight from Indy to St. Thomas but it was well worth the wait!  The evening off the plane consisted of eating at an outside bar with music playing nicely and about 72 degree winds breezing through your hair...no worries!

Day 2 consisted of Pat fixing breakfast and off the do a little snorkeling and beach watching. Tom knows all the little beaches without a lot of people....so when we only have a few hours to "play" we go to these. Tom worked last night so Pat and I drove into the city and ate at one of our favorite places from last year called XO BISTRO. It is soooo fine! We drove Tom's manual Jeep and Pat only drove down the wrong side of the road once.....EEEEEEEEEEK!  But, we made it back to the house and I slept like  a  baby. 

Today, for my 50th birthday, we are having breakfast at The Ritz!  How many people can say they do that on their birthday!!  Then we will stay on the beach at The Ritz Carlton and swim, snorkel, and live like I was dying.....literally!! 50.......it's just a number...but when your fighting terminal cancer....it's HUGE. Each day....whether it's your birthday or not, should be lived to it's fullest. Most days, I do a good job of that!!

We will be in St. Thomas until next Wednesday or Thursday, then we will take a sea plane to St. Croix and spend a week at a resort there. I am looking forward to the sea plane ride! I am looking forward to more days with my feet in the sand, more days of feeling that soft evening breeze hit my face, and to just be an islander.....if only for a short time.

When we return from this "bliss", we will be home a little over a week before we fly to Texas and get a checkup. I can't worry about the unknown as it does NO good. And how can I worry about what's going on inside my body when everything here is so perfect (except the prices for stuff!!).  It is what it is.....CANCER....and it will do what it damn well pleases......  So, I pray all day, every day, for all cancer patients. There's only one person on this earth that can tell me or decide when I will leave this earth. ONE.  And HE is the only person I am listening to and following~

So, for now, enjoy your day. I will enjoy mine!!  Happy Day!!

Hugs~
Patty

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!!

Patty

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
ALK PHOS
373                     313
ALT
138                     152
AST
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,
Patty

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~~

Patty

Wednesday, November 12, 2014

Thankful for cancer.......REALLY?

It's the day after Veteran's Day...and Veteran's Day is almost always an EVENT in our house since my husband is a veteran. It was a great day...and I am thankful for all of our veteran's no matter what end of the earth they may be on...or if they gave their life for our country. God Bless them ALL!

I just finished writing my second children's book to sell for our Relay for Life team. Don't go and get all excited...now comes the hard part of illustrating and painting the pages before taking it to the printer. Irene Goes To The Beach is sure to be a hit......or atleast I think it will be.

My Dr in Effingham called yesterday evening about 7 p.m. This is my local oncologist that I still see on a monthly basis to keep in contact and get my blood drawn to check my Anti Xa and CA 19-9. It is still holding at 9 with my local lab. Dr. Dy said after my last visit, he had a meeting with many doctors about my case. I am talking about a Dr from Mayo Cinic, and a couple that he works with.  On the last scan at MD Anderson, it showed some nodules in the lungs which could indicate the beginning of metastasis. I have had SOME nodules for almost the whole time I have had CC, but they are just there....and of no concern. Well...they weren't until this last scan. Dr. Dy and the dr's he talked to believe the nodules could have a slight uptake from the radiation injected into me before the scan. My CA 19-9 is too stable for the cancer to be jumping to other places....or that is their assessment. And...if it really has metastasized, it REALLY is so slow growing, I could go another year without  treatment before we have to worry about doing anything new. It is STILL considered cholangiocarcinoma that has metastasized to the lungs and NOT lung cancer. So my CA 19-9 is still what they keep a close eye on with me.  Dr. Dy also talked to Dr. Javle about a company he works with (outside of MD Anderson) and they draw blood to do a more intense study of the genomic mutations in your body. So if Dr. Dy draws blood to send to a new company, they see  if there are more types of mutations that might have better results to a targeted therapy.  From the Foundation One test (where they sent a small hunk of my liver for genomic testing) I have only two mutations in total. They are P-Ten and FGFR2.  Both are hard to treat and not a lot of clinical trials out there for them. MD Anderson has one for the P-TEN but Dr. Javle does not think it is doing too well so he would rather not put me in it...and because I am so stable. .....he wants to wait as long as we possibly can so maybe a better option becomes available. Sounds good to me.......but it is also like a ticking time bomb in your body.  This is where I really have to lean on my faith and not on my own understanding. God hasn't kept me here on this earth for this long....in this good of shape....No, I believe with all my heart, God has a plan for me. It might not mean living until I am 80....but who'da thunk I'd still be here today!!!! Pardon my grammar....but it's so true.  I am thankful for Dr. Dy taking the time after our last visit to contact other doctors to "pick their brains" about my case and to also call Dr. Javle to discuss what his plan of action is for me.

I am thankful I can stay home, spend days with my grandchildren, take trips with my husband, exercise as much as possible at any time of day. I am thankful for friends....family....and most of all, God.  When I lay in bed at night, I pray for many people, I ask God why I am worthy to have this terrible TERRIBLE cancer and to be so stable. I have became friends with CC patients who were diagnosed after me and are no longer living. Dr. Dy says I am the longest living CC patient he has ever had as a patient. ME?  REALLY?  I know I am not worthy.......but as I lay there in bed, I ask God to forgive me of my sins. Believe me...I've had some whoppers!  But I 100% believe He forgives me or I would not be here. He is guiding me on this journey and without His guidance, I would be one lost person! Thank you God...Thank you!

I have been walking 2 1/2  miles a day or getting on the elliptical for 30 minutes since it has gotten cold the past few days. I am thankful I feel good enough to exercise at all. God is Good...ALL the time!

The Feeding to Heal Program at Richland Memorial Hospital is just running so smoothly. The patients we feed really do appreciate our hands preparing food for them as they get pumped full of toxins!  Right now, I have every week filled with businesses or families preparing food until the end of January. My goal is to get the month of February filled up and that covers all the vacation time I will be gone PLUS my checkup at MD Anderson in Texas the first week of February.

I am thankful for each and every person who takes the time to read my blog. To all the people who donate food for the Feeding to Heal program, and to all of the people who pray for me. Please don't stop...and let's pray for a cure for all cancers!!

In closing, yes, I am thankful for the way I have changed as a person since getting cancer. I am not thankful that I have cancer.....but I am thankful God is in my heart and in my soul. He is beside me every step in my day. For without Him, I am nothing. NOTHING.........

Peace be with all of you this Thanksgiving!

Patty Corcoran

Wednesday, October 8, 2014

My Journey Takes A Slight Curve.....

Why is it when you drive so far on the way to your destination, it seems much shorter than on the way home?  Pat and I had every intention of stopping overnight and then he boldly states we are driving home Tuesday night. Grrrr!  BUT, we did do exactly that and we made it to Suntone Road by 12:40. A couple of times he mentioned stopping and just getting a room but I at that point in the game was like "Nope, we're 4 hours from home...let's get it done!




On the day of my visit with Dr. Javle, we barely sat down when Ron (the nurse) called my name. We have known him so long we hug in the waiting room and everyone stares. Then he proceeds to flirt and say "Dang...you got it going on"....or "Boy, you are smelling fiiiiine this morning"! Tuesday, it was "Ohhh, I like the hair".....  He also works for a couple of surgeons that do resections when Dr. Javle has work in other buildings. So, to The Horn's....look for Ron. He just might be there for YOU!
No PA came in to this visit but after Ron asked a few questions in the room, the door was opened and it was Dr. Javle. We did the whole how are you feeling....any pain...blah...blah...blah...type of stuff. Then he asked if I had  any trouble breathing. NO, I don't.  He pulls up the scan....the GOOD news is there is nothing that lights up on the scan where my cholangiocarcinoma is...just a bit of scar tissue which is normal after radiation. Then he goes up to the lungs. Big GULP!  I have, since 2011 when I started this journey, had some nodules in my lungs but of no concern. Then in July of 2013, there were a couple that had gotten just a tad bit bigger and lit up a very low amount on the PET scan. We decided to just monitor it as it could be just from the radiation lingering. Tuesday, there were some new nodules of concern (although they were too small to even measure or biopsy....he is pretty sure they are cancerous). I mentioned my genomic testing and he said one of my mutations was a VERY slow growing mutation. That is why my Cholangio and maybe the nodules are SO slow growing. He would like to let things be until the next visit and see what the nodules do. They may be so slow growing that we let then "sit" another 3 months. If they are getting bigger, I will probably see a pulmonary specialist. Dr. Javle is going to speak to a specialist NOW to see if they want to go in now and just get them out OR let them be until the next visit to re-evaluate. I will e-mail Dr. Javle in a week or so to remind him he is to talk to a specialist and let them evaluate my scan. The good thing is that it's not a mass...they are just nodules and can be easily eradicated with chemo or sucked out....probably followed up with chemo to get any cells hiding from us.  DEEP BREATH~~~~~




As we finished the visit, he said to keep exercising (which I told him I had not been good at lately) and eat well. I told him I usually had fresh fruit smoothies with flax for breakfast and he said "good..good....good!  Eat well~~~


Betty Jean Horn, Moi, and Kristen Horn.
I was also able to meet a family I have been in contact with (for a couple months now) in the lobby of The MAIN Building at MD Anderson. Just as we were walking to the meeting place, they were coming through the doors and so we had a very nice but short meeting with "The Horn's" from Alabama. She is so blessed to be eligible for a resection and I ask that you keep the Horn's in your prayers as she recovers in the months ahead. Wonderful family.....and I believe I am one of the many "angels" they will meet on this journey!!  




If you didn't get a call yesterday about my results, I apologize. I called my daughters, my siblings, and my mother....that is almost it. I wanted to crawl in a hole and wallow in ....not self pity but more of a WHAT!  I have not smoked...this isn't fair....people who smoke those "people killers" should be the only people to get this. My father smoked from appr. 14 to about 5 days before he passed. He literally took off the oxygen to "toke on a cig" and then reposition his air tube of oxygen. He never got cancer in the lungs.....I just find it odd he ate fried foods, never exercised, and smoked Camel cigs my whole life and most of his...and never got the dreaded cancer except prostrate cancer which he beat many years before he passed.  My nodules have metastasized from the CC more than likely....so I don't really consider it LUNG CANCER.  I had a million things running through my head.....and some God winks along the way that put me in my place. At times, when I was thinking negative, I believe God stepped in and detoured my thinking to "YOU have no CC lighting up right now...NONE".  That is SO huge. THAT has always been what I have prayed for. These nodules are SO small they can't even measure them???? As Pat says, I am blessed and thankful there are no "wildfires in my body" there are just a few "sparks in there smoldering". SO, if I go back in 3 months and they are bigger and brighter or more of them, I will pull up my bootstraps and....you got it...."STOMP THE FIRE OUT AND FIGHT LIKE A GIRL!!" 




As Dr. Javle  got up to leave, I said so this is a bad visit!?!???  He said NO, this is a good visit, You are STABLE. So stable we are going to sit tight and give me 3-4 months to keep running around enjoying life, praising God for my life, and doing good deeds for people I might not even know.


I am so beyond blessed.... as when I started this journey 3 years and 8 months ago, I wasn't given a lot of hope from the doctors. I have surpassed most patients who just receive chemo and radiation. I have stomped and spit on CC. So....again....I will march to the beat of the drum. I will exercise my heart out, breathe deep and enjoy this crisp air, and maybe even learn to like MORE healthy food out there. But most of all, as I woke up this morning, and as I lay in bed with a few tears rolling down my cheeks, my husband wrapped me in his arms and told me... "Its all going to be ok......you have slow mutations and you have FIGHT left in you, and you will... if and when the time comes...fight this with dignity, strength, and faith...just as you have in the past". 




My husband knows me well. Even though I feel like I have been beat up.....I have the most wonderful 5 daughters and one son who I will fight for more time with . I will fight for time with my grandchildren. I will fight my hardest to see Samantha's first child(it's not in the oven yet so back off :-)), I will fight for more time to praise and give thanks for the wonderful life I have had thus far. I have son in laws who I love like my own sons... I have friends who I can't bare to not be able to bug and pester :-) , There are too many harvest moons, double rainbows, autumn leaves, crocuses in the snow, country driving days, canoeing/kayaking on calm waters, lining up food for chemo patients at RMH, ......just living and loving my life.




So for now, we ALL pray. We give thanks every single day...many times over for my health so far. I have faith that God is not pushing me "out there" and thinking "let's see how she deals with this"....no....NO, I believe God is RIGHT beside me. He will hold my hand, he will carry me if needed, he will always be with me. He, along with my family, my friends, my blogger family, my church family, all my Christian friends, friends who pray for me and don't even know me, will be right beside me. Traveling this journey at every twist and turn....and we will keep this journey going as I am guided by God's light.




So...HUP-two-three-four, HUP-two-three-four....onward Christian Soldier.....a marching we all will go...until this cancer all throughout this world is put to death INSTEAD of all the people cancer is putting to death throughout this world is put into a pit and buried forever!!



Hugs and prayers~~


Patty