Tuesday, August 25, 2015

I am happy to announce Cycle 7 is starting TOMORROW!!!

I am happy to announce that after 53 months, I AM STILL ALIVE!!  Whoulda thunk?!


We stayed with Doc and Elvira (friends we met on a Costa Rica trip) the night before we flew out of St. Louis. We had a wonderful evening of laughs and super good Bosnian food......Doc made a comment.... He exclaimed to us "Maybe your paperwork has been lost in Heaven and God didn't get the memo....YOU'RE SUPPOSE TO BE DEAD!!"  We had quite a few laughs over that one!  Ever want to meet a family that is living the TRUE American dream...we are blessed to be their friends!!


We landed in Houston at 8:15 Monday morning and went straight to MD Anderson to get my blood work done...then begged the CT scan department to work me in as my scan wasn't until 5:30 start time. I was done at MD Anderson at 2:30 and spent a nice evening with Linda Burgener. It took us almost 2 hours to get to MD Anderson to collect the results of my blood work/scan, and see the eye dr.  Blood work looks really good except the trial drug is making my triglycerides high so I am on a pill for it. My creatinine went from 1.14 to 1.04. That's a good thing but we will still keep a close eye on this. 
I had a small area of concern on the last scan in the upper part of the liver that is now smaller. The aortal caval lymph node has slightly increased in size from 16 weeks ago but is still smaller than it initially was at the beginning of the trial (because it significantly shrank in the first eight weeks of the trial). Dr. Javle stated he was not concerned with the growth with the aortal caval lymph node and they were going to do more extensive measurements from the scan to make sure they are totally accurate. My CA 19-9 is STILL at 4 which is just so amazing! (0 - 35 is normal)  All my liver function numbers are ALL within normal range. I have my left eye that is a little blurry but my eye doc says my pressure is good and it looks really dry...so we will try eye drops 4Xday and eye gel at night to see if that helps. I have also had a few toenails to fall off....but seriously, what do you need them for anyway!!  :-)
I am AGAINST ALL ODDS with this disease....but so many other people are also defeating the odds. WHY, I ask, why are some of us defeating the odds and some are not. I don't have to "right" answer but I know for me, it all comes back to God. Always being right beside me...even in bad times.  If you think my journey has been all roses and yellow brick roads, you've not read my blog all the way through!  But I am thankful for each step, each 5K, each day I can walk with my grandchildren around the block...........
Thanking God for this cancer may seem "silly or stupid" to you who do not "get it" but I am thankful for it...and for making me realizing the good in every day, in every raindrop, in every person, in every step of my day. Thank you God!!
I wanted to of course mention the 2 week trip Pat and I took to Venice and the cruise along the Mediterranean Coast. It was a dream...or maybe a movie you only dream of seeing...but you truly are seeing it!  It was so special EVERY DAY and something I will always carry in my heart. From experiencing The Parthenon in Athens, to visiting monasteries and nunneries, to just sitting at an outside cafe' drinking a latte or having an Italian pastry.....it was all a beautiful vacation.
We are sitting in the Hobby airport waiting on storms to pass and already have an hour delay. No complaining here....just adding another hour to my life. It's back to Illinois to corn fields, beans, and hay bales. There's festivals, 5K's and wiener roasts. It's life....my life.  And it's a pretty good life to me!!


Thanks for all the thoughts & prayers.


Hugs~~
Patty Corcoran

Wednesday, July 29, 2015

F.O.U.R.!!

It might have been record time to Houston...then back home to Illinois...all in a little over 24 hours. It was just a quick checkup with blood work, eye appointment, EKG, and follow-up with a different dr as Dr. Javle was not in the office. The Schonert's were so gracious to pick me up and take me back to the airport. Deb took  me to my appointments and we even managed to shop a bit after I introduced her to Hungrys (one of my most favorite places in Houston to eat lunch).I ran into one of my all time favorite nurses that work with Dr. Javle, Ron. Ron is like a best friend...or big brother, always greeting me with a hug and "How Ya Doing" conversation.  Ron knows me well...as soon as he sees me, he knows if I am "on cue" or if things are off in my life of cancer. He's a keeper and I hope MD Anderson keeps him right where he is!! I also met up with a new CC family (The Lufkin's) and they were just a super family.  I have also talked several times with Mrs. Lufkin's twin sister and she is a gem!!  Welcome to the CC world....I hope you are blessed with good results and do not stay long with us...that you are cured from this disease and live a long and prosperous life!!
     My day started with blood work and the results were pretty amazing! Everything is looking good except the Creatinine which they say is from previous treatments of Cisplatin (that is their assumption). The clinical trial nurse is not concerned with the number right now. She says I should not consume my time worrying about it just yet. It's not in the worry range!!  My CA 19-9 was at its ALL TIME LOW AT 4.    F.O.U.R.!!!!    This means the cancer is barely active at this time. I did not expect it to even be tested this month but the number made my heart smile. I am praying that this clinical trial keeps on working and soon my cancer marker hits zero. Is that possible.....It's a "wait and see" game that only time will tell.  Does this mean my cancer is all wiped away.....probably not. It would just be in hibernation and I am ok with that. Let's just pray my other organs can withstand the trial drug for a very long time!!  Before I left for the airport, I met Connor Schonert who is doing an internship at MD Anderson in the Research department. He is an Olney native and I knew his mother since I was about 3. We went to Claremont Grade School from K-6 grade. Our grandmothers were best friends. Kathy passed away from cancer but she was a very good person. She would be so very proud of Connor and the great job his parents are doing in raising him into a very responsible young adult. Only one slip up that I know of....knowing the difference of central and eastern time when you have a meeting with a very important person!! ;-) It's an inside joke with Conner!
    I am feeling really good....and was in the MS Join the Movement 5K WALK (I did jog a little...barely) but I finished in good time and then was pooped until evening when we went to the auction for this event.  Thank you Karen Zuber for thinking my painting was worth bidding on!
     Yip, I am going to tell it to you if you've not already heard (although I am SO excited and feel like I have told everyone!).  Pat and I leave a week from today for Chicago to fly to Canada and on to Venice, Italy. We will be tourists there for a few days before boarding the Royal Caribbean Cruise ship to cruise the Mediterranean Sea along the coast of Greece for 7 nights/8 days. We will tour 6 days/stop at ports to see the beautiful sights of Athens, Montenegro, and a few other places. Then we will unload at Venice only to spend a few more days relaxing with good food and beautiful views. It's like a trip of a lifetime and my dr says to totally do it...that my health is great enough to go!! Dr. Javle and his nurses think that they should "go along" to make sure my health needs are all met. I think it's a fine idea if they want to pay their way! ;-).
     I will close this post paying special tribute to those who have battled cancer and lost their battle. It makes me sick to my stomach every times someone passes. I know it's part of life....but it doesn't make it any easier especially if I have had the privilege of meeting them and becoming friends.
And to the people out there still fighting....keep fighting day by day....minute by minute. AND, to the ones who have beaten this monster called cancer-CONGRATULATIONS!

May God Bless you, May God guide you, and May God keep us all in the palm of His hands!

Grateful and blessed~~
Patty Corcoran




    



Tuesday, June 30, 2015

"Why not me"

I was somewhat leary to trek our way to Houston, Texas this week as I felt like my insides had been put through a meat grinder...sort of.  Sunday, as I prayed and listened to the radio as Pat drove to Houston....something said to me "WHY NOT YOU??   (This was when I was pondering what I could do next to kill the cancer cells if the clinical trial pill had quit working.  WHY NOT ME to be the one to get some good news. WHY NOT ME to keep marching on in this fight! 
You see, when I got the devastating news that I had cancer, I didn't say "Why ME!"   I said "Why not me!!"  I didn't want to wish it on anyone else in the whole wide world....so I pledged to fight like a big girl and give it all I had.
My daily prayer as I was getting ready this morning was this:
My steadfast Love never ceases, My mercies never come to an end; they are new every morning. I know how you desperately want to believe this--and how much you are struggling to do so. Today, the only things that seem endless are your problems and your pain. But I am here--tenderly present--ready to help you get safely through this day. Believing this truth can make the difference between coping and giving up in despair.


God was with me ALL of today....and every day!  Sometimes when I start to worry....I pray...and I pray...and I pray some more. Thank you God for realizing that I needed You to hold me up...to know that I will continue marching!!


Dr. Javle said my scan report was the first thing he looked at this morning. It was the best thing he looked at this morning. He was so happy with my scan...as was everyone in the office. They all were excited when they saw me and knew of the great report Dr. Javle was anxiously awaiting to tell me. I had two very small tumors residual from the main big cholangiocarcinoma in my liver that are now gone. ERASED! No MORE!   Then there is the aortal lymph node that put me on this trial because it doubled over a two month period back in January. After being on the clinical trial for two months, it shrunk a lot and my cancer marker was 7.  Today my cancer marker is 5.8!!!   My platelets had been hanging around 109,00 to 118,000....today, they are 142,000!!   That is awesome news.  My liver is stable, my kidney function is good, and my blood work is mostly all in normal limits.


I met friends from Oregon for lunch on Monday.....and then saw them again as we were waiting for the trial drug. She asked me if I thought God had a hand in my good results....Oh yes...he has EVERYTHING to do with them!!  He calms me, He talks to me, He directs me when I am weak, He is right beside me all the time.  Yes, I have been blessed with GOOD dr's....but God is MY Great Physician!!


So, Pat and I are planning a 10-12 day trip to Venice, Italy and a cruise along the coast of Greece in August. I am going to live and try to enjoy every day of this life.


As Pat and I were eating lunch with the above mentioned friends, Lisa asked my husband, Pat how we deal with all of this cancer stuff. I will leave you with his response:


"None of us really know for sure from one day to the next. Since it is already past noon today, today is looking pretty good!! And tomorrow seems like a fair possibility. We just have thank God for every day that we wake up and make the best of that day! Isn't that all any of us really have?"


So be thankful for every day....just as I am thankful and blessed!!


Hugs,
Patty Corcoran



Friday, June 5, 2015

Stable and back on the trial.

I just returned from Texas Thursday evening and I am pretty "o.k." with the dr visit. My bloodwork was better and Creatinine was 1.00. Phosphate Serum was 3.5...so back on the trial I am.  I am on the 75 mg dose of the BGJ 398 drug. I will go to RMH (local hospital) and have my creatinine checked to make sure it hasn't raised. I do not need to be dealing with cancer and failing kidneys!!  Dr. Javle didn't say that he wanted me to do the extra labwork but I want to stay aware of where things stand. I will go off the drug if needed...if my levels are good, I will stay on the drug and march on. He is not too worried about my creatinine level...and says it is just borderline high for the trial. Novartis wouldn't want a patient on the trial to have kidneys that failed...now would they!

It was a good visit at MDA....the new haircut was a hit although my nurse (a man) came out twice to get me and I had my back to him and he finally called my name. The clinical trial nurse Ashley, who we all love is leaving MDA for a job elsewhere.  It was a good visit.....good labs, good EKG, Eye visit, I lost 4 pounds...somewhere-still looking for where it went!! ;-)  and a good visit with the good doctor J.  I asked him about Keytruda...a drug used for melanoma but has proven to work for other cancers. You have to have a certain PD-1 type of cell for this drug to work well on your tumor....but he is willing to call the drug company and maybe see about starting a trial for CC patients with this type of cell. 

As a new family travels to find hope at MD Anderson, there are others who end their battle of treatments at MD Anderson. I am not sure when my day will come and I am confident we will ALL be faced with death at some point in time. I am not ready to throw in the towel and I believe I have not finished Gods work here on earth. But when I feel he is knocking on my door, I will be there~~

I got a new bracelet today and I will leave you with what it says.

TRUST IS  LOT EASIER WHEN YOU QUIT WORRYING ABOUT WHAT COULD GO WRONG AND REMEMBER HOW MUCH LIFE YOU'RE GOING TO LIVE NO MATTER WHAT HAPPENS~~

NO MATTER WHAT HAPPENS!!

I will end tonight's blog post with a tribute to my mother-in-law. JoAnn Corcoran was truly a happy person who rarely saw a stranger. She was so very proud of her son, Pat and daughter, Lisa.  Tom and Kate (Pat's children) were the love of her life in years later....and she retired from being in the White county school district for many years. JoAnn...better know to her grandchildren and 5 great grandchildren as Mema was always there with a smile on her face. She loved the pictures Lisa would print off and were pasted all over the front of her refrigerator. As we pay tribute to her tomorrow, I can only hope people remember me as fondly as they will her. She will be missed~~

Hugs,
Patty

Wednesday, May 20, 2015

It's ok.....mostly

The fluids went in and the needle came out. Labs were drawn right in my private room....treated like a queen ;-).  Then...I waited for the results. They were not what I wanted to see BUT...it's ok.
My creatinine was 1.05 and I needed to see it go to 1.00   It went UP instead of down....to 1.1.  GEESH!

But, my BUN is standing strong so I truly believe it is just the clinical trial pill playing with my "innards". I will stay off the trial until I go back in the first weeks of June. I will have blood work again and it will all be good so I can get started on Cycle 4 of this trial. At the end of Cycle 4, I will have another scan to see where we are with this trial. If being off the trial a week early means my kidneys will not be damaged, then that's what needs to happen.

Being a lab rat is hard work...mentally more than anything.  You think you're doing everything right and drinking lots of water...eating the right foods. BUT, Dr. Javle says it's not me, it is all the poison that has been put in my body...especially Cisplatin (a chemo drug I was introduced to FIRST when I got this cancer) and the clinical trial drug I am on. So, we will give thanks for every good blood test and pray for fewer bad blood tests....but most of all, I pray for stability with the cancer and stability with my kidney function. I can't live without my kidneys so I am so happy to have Dr. Javle being so careful with them AND the drug company Novartis with strict guidelines on lab numbers....so I don't lose my kidneys or eyesight or get a heart condition. They cover all the bases....as they should!! 

So, there you have it. I am not going to let it ruin my day. Nope, not one bit!  It is just meant to be. I will be back on the trial before you know it and reporting good news!!

Have a great Memorial Day Weekend. Be safe, drive sober, don't drink and drive. Call a friend~~

Patty 

Update from my mini trip to Houston....

I flew into Hobby Airport Monday on a delayed flight (two hours late) but the Morris family was there to pick me up. We had a nice evening before getting up the next morning and at MD Anderson at 8 am for blood work. I was in to see Dr. Javle by 9. My labs were mostly good. Platelets were almost in normal range. All liver enzymes were good except the alk phosphate was a little elevated. White count was really good. BUN was great. But, the creatinine was 1.05 ...so my clinical trial pill has to be stopped until the creatinine comes down. So....I am at RMH in ICU (only place they could find to put me with an open space) getting a litre of fluids over a 3 hour period. Dr. Javle thinks this will bring it down enough to resume the last week of this cycle (which ends Tuesday of next week).        
     So, as soon as I get all the fluids pumped into me, I will have labs drawn immediately. Results will be sent to Dr. Javle and Ashley (the clinical trial coordinator) and I can hopefully resume the meds. The creatinine just needs to go to 1.00.  I wanted to go to the chemo area to visit with the nurses(who also work in Effingham) and also visit with a new chemo patient to calm his nerves if I could. PLUS, I was looking forward to a free breakfast and lunch from the chemo program I helped get started!! BOO my luck!
     I leave Friday night/Saturday morning with my daughter Leslie and her husband Rhett and two kids (and my friend Debbie Weiler) to go to Alabama for a week. Pat is going on a hunting trip out west for a week.  I am looking forward to some time away not related to a hospital, do some swimming, pontooning, and meeting new friends of Leslie & Rhett's. And then, of course, spending time with two cute little grandkids.
     I will also honor all members of all the Armed Forces that have served, are serving, or have died for our freedom and our country. I hope to find a service to attend and maybe try to tell my oldest granddaughter how her great grandfather was in the service, her great uncle Larry, her cousins currently serving and one who served but just recently got out of the service. And about her Grandpa Pat who served in wars, and was in the National Guard for 19 1/2 years.
     I pray for a lot of aching hearts right now, so painful that I cannot even fathom of losing a person the way some of them have. I pray they somehow can forgive, find peace, and try to find comfort somehow in all the tragedies that have been like a domino effect in our community and surrounding county.
     When I was in Houston I met a new CC patient who is new to MD Anderson coming all the way from Oregon. She and her husband were quite nice although time is so short on my visits when it's a fly in and fly out (all within 18 hours) so not a lot of time to visit. I also heard someone holler my name as I got off the elevator and it was ANOTHER CC patient on the same trial as me. I realize I am just so so blessed to still be a patient with this terrible monster of a disease. To be able to carry on daily at a almost totally normal life. I thank God daily...and actually more than once a day! 

I will update and hopefully be able to say I am back on the clinical trial pill today. If not...it does not mean I am off the trial...I will just have two out of the three weeks of a cycle done instead of getting the full 3 weeks in of the pills I take. I have definitely started losing my hair little by little. BUT, it you know me...you know if it gets too thin, I'm not afraid of razors...I'll shave it off in a blink of an eye!  Saves on "getting ready" for my day...but I am not HOPING I have to shave my head.....just saying.

God bless you all and especially our military, cancer patients, MS patients, CP patients, I could go on and on...so God bless the WHOLE USA!

Hugs,
Patty~~

Tuesday, May 5, 2015

121,603

     That's the amount of hits my blog has had....maybe just checking to see if I've blogged or seeing on Facebook that I've posted and then they read the post....either way, it keeps count of how many hits my blog had and all the different countries from around the globe that read my blog.

     Numbers.....when it comes to labwork, tumor sizes, cancer markers...it's all about numbers. Relay for Life, miles back and forth to Texas....it's all about numbers. Maybe that's why it's one of the first things you learn as a child. 1...2....3!!!  My lab numbers today were some of the best they've ever been. If you are a cancer patient, you can say the CA 19-9 (for CC patients) doesn't mean much. BUT to me, it's a trending number that has continually went down when I am doing really well...and it has climbed when I had more active cancer dancing inside of me. Today....DRUMROLL.....my CA 19-9 is 7.9.  Dr. Javle states it's probably lower than his or my husband's!!  They keep a chart of mine showing the ups and downs and this shows me it DOES mean something with my cancer. Maybe it has something to do with me having such a slow growing cancer.  The more aggressive ones seem to be on the higher side.
     The reason I was put on this clinical trial was because I had an aortal lymph node that was new but we wanted to stop it in it's track FAST. So, after weighing our options, we decided to try the BGJ398 trial that targets the FGFR2 mutation in my body. The aortal lymph node two months ago was 20mm x 16mm. After two cycles on the trial (and I had to stop the pill after 14 days due to my high phosphate level), today my aortal lymph node size was 13mm X 9mm.  Dr. Javle was ecstatic over the shrinkage. All other activity in my liver is stable..no growth. I asked about my liver and kidney function....Dr. J states it is all well...no worries with them so far. My spleen is somewhat enlarged (and has been for over two or three years) so at this point, no worries!  IF it would continue to get more enlarged, they may do a spleenology procedure or something. It is enlarged because it is eating my platelets up hiding them in my spleen. My platelet count is not within normal limits BUT the number is not bad enough to worry about it at this time (they are hovering around 110,000). So...bottom line is.... the drug is working. I have hardly any side effects. The low phosphate diet is not that big of a nuisance.....it's do-able. So, I will start on 75mg Wednesday and I know it will still be working inside my body. This seems to be where most people are at....some are even at 50 mg with stable reports.
     I met a lady that has had CC (in her mid to late 60's..I'd guess) and she has been seeing Dr. Javle for almost 6 years. She has been on this trial since December 2014. She is doing well and stable. I also visited with Vicki Davis who is a bright ray of sunshine.
     To sum the day up, I wasn't sure what the scan would show today. I had faith that no matter what, I would take it one day at a time. As I was being slowly moved into the dome for the CT scan, I thought to myself....."No matter what, God is with me"....and I also thought of what someone said to me at The Relay For Life Saturday night....all you need is faith the size of a mustard seed. I KNOW I have more faith than that, but the point is, He is with me, every minute of every day. God is with all of us, and some people may have a stronger faith than me...and I sometimes feel I am not worthy.....other people have this disease and a stronger faith, so why am I getting all this good news and they are not. I haven't figured all of that out, and I wish Father Jerry was still here to talk this over with. But I do know I am blessed, I am loved, and I am so thankful for God's love.
So, not only is my cholangiocarcinoma stable, I also have shrinkage in the nodule. That, my friends and family is one of the best reports since getting this cancer in Feb. of 2011!!
     I want to close with a few words of thanks for all the friends, family, and complete strangers who bought books from our Relay for Life team. People who supported our fundraisers, donated their time, donated cakes, supplies, in any way helped our team win FIRST in the most money raised for our team FOR THE SECOND YEAR IN A ROW!! Suntone Beach Survivors rocked it this year with a lot of sweat to win that trophy again this year and I thank you all!! 
     O.K., I am really going to close this time...after thanking God. How awesome it is that He reassures me that all I have to do is Be Still and Know that HE IS THERE!  I am so incredibly blessed with his love.  SO INCREDIBLY BLESSED~~

I will close with the MD Anderson's logo on r. J's computer's...with my new Tieks on. AND, one with my children's books where proceeds benefit the American Cancer Society and The Cholangiocarcinoma Foundation. We still have books if anyone needs one mailed.  I would love to put a picture of our Relay team but since half are missing, I won't.

Many hugs!!
Patty