Thursday, March 5, 2015

I Said...... "I'M WHAT???"

Bloodwork is being a little bit of a booger as my phosphate serum is .1 from being able to be in the trial. 3 weeks ago when I was here...it was a whole point within range. But on Monday is was .2 from being within range so we are moving in the right direction. Dr. Javle told me to drink LOTS of water and come back the next day for blood work. It did go down .1 but I need it to go down another .1 to be in the trial. I am eating super healthy and watching for anything with phosphates in the ingredients....or high phosphate foods in general.

There was also a problem with the urine sample I gave them on Monday. It shows I am pregnant. I just laughed at Dr. Javle and discussed measures were taken along time ago to stop that from happening. He insisted we do a blood test on Wednesday (just to clear it up that I am not pregnant at age 50) and they called back this am saying it is still positive. I joked with the dr that THAT is why my belly is so big!" He didn't say anything...he just grinned. He is such a caring, gentle man. I am blessed to have one of the most knowledgeable doctors for CC. Anyway, back to the pregnancy test, (I know a lot of you are laughing your "arses" off...go ahead, SO DID I)!!! I also had the CT scan and it shows nothing to be concerned about-no baby!! Sometimes, Dr. Javle says this happens because of the tumor messing up your body/blood somehow. He has saw this before but it doesn't happen a lot.  We will proceed with the trial once/if we get my phosphate serum down. I will go to MD Anderson tomorrow at 7 am for I..V. fluids and see if we can lower it that way. Right after the fluids, I will have it tested again. Hopefully, it will lower that  .1% that we need and it's one step closer to starting the trial. I will maybe have Friday off as my eye appt. has been moved to next week.

Crazy.....to even think about a child at my age makes me want to hurl! I just laughed at the dr and said..."No possible...NOT funny...Not happening!"

It is one crazy, busy ride (traffic wise) from Tomball to MD Anderson. Just for toll fees and parking, it's $15.50 or more a day that we travel to MD Anderson.

Pat and I got a copy of the CT scan I had on Monday and my tumor is now 8.2  by 8.5 cm. When we started it was like 11 by 10 cm. One thing amazing to me is that the tumor has totally occluded the middle hepatic vein so it is now all draining via the right hepatic vein. Amazing that it just re-routes and finds another way.

We are headed to the rodeo Saturday with Bruce and Deb Schonert.. Gonna see us some horses, cows, and cowboys....and probably some wanna be cowboys, too. We will also see Alan Jackson in concert. Should be a nice time except the weather is calling for a high of like 48 and chance of rain. Lots of stuff is indoors so it's all good!!  Deb and I made an IKEA trip today and Pat said "No thank you" to that trip.  Linda (the friend)who we are staying with will be home sometime today. We have not seen her since we got here Sunday night....but we are entertaining her dog and holding down the fort.

It's just a waiting game for now....Tests tomorrow after IV's. Next week I should know by Wednesday if I am allowed to enter the trial (based on my phosphate serum level).  I am ready to start the trial as a handful have reported good to great results so far. Only one person has been terminated from the trial. Not just stability BUT shrinkage and nothing new developing. Stable is good, shrinkage is great, and just killing it all would be a dream we hope to find out about with this trial.

I have said it many, many, MANY times. LIFE is all about time.  I will be patient as this journey may be a curvy and twisty road....but I will keep the faith that God is beside me and everything will fall into place.

Prayers are much appreciated and cards are also like getting a dozen roses.  They make my day...that one card with a note inside is like keeping my land line to my home...my family...and my friends.

On a different note, the book I wrote and illustrated has been approved and is being sent to the printer. Then, they will send a proof of a book back for us to "ok" and then we will be anxiously waiting to start selling those hardback books!! Once we have a picture of the front copy, I will post it or one of my girls will.  It is just as beautiful as I wanted it to look. Courtney at Printforce did a super-duper job with the graphics...font...EVERYTHING about it looks great!!!!  All proceeds benefit our ACS Relay for Life Team and the Cholangiocarcinoma Foundation.

God has been so good to me...blessed me with quality time with mt family, and has strengthened my faith and made me realize life isn't really LIFE unless God is in it-FRONT and CENTER! And for that, I thank you, God!

Patty

Monday, March 2, 2015

The First Day of the Pre-Clinicl Trial Journey

We had a the worst drive to Houston to date. We woke up in Illinois with close to 6 extra  inches of snow on top of what we had. We drove 30 mph all the way to Salem...then 40-45 on I 57 all the way to Marion, Illinois. It put us at least 2 hours behind the already long 14-15 hour drive.

It's Monday morning and I have blood work at 12:45 at MD Anderson...then start the CT prep at 2:20 (you drink a lot of the nastiest tasting chalky pasty stuff I have ever had in my mouth...you drink a little here...wait a bit...drink more, etc........but I can do it...because I AM STRONG)! Then we move to the scan room scheduled for 4:20.

Tuesday....I see Dr. Javle (who is the doctor ahead of the trial) at 2 p.m., and then I have an echo cardiogram at 3 p.m.

Wednesday & Thursday, I am free...no appointments! But it's like 45 degrees down here....so maybe a movie is in order OR  IKEA!!!!!   Maybe a visit to the Morris' family...

Friday.....I have an opthamology appointment as this trial is watched cautiously as it could cause problems with the eyes and even cause blindness. It has not happened to anyone but if I start to get blurred vision, I could be "CHOPPED!!"  :-(

I have to pass all the above tests before I can enter the trial ( So....if my heart has a problem, we will look for a different trial....or figure out a new "detour" but I have faith I will be ok.

Next week, if approved, I will have blood work on March 11th & 12th. This is the week I will start the clinical trial beginning with a pill you take for 21 days and then you are off the pill for a week. I will also take a pill to keep my phosphate level in check. There has been a little bit of problem with patient's levels getting too high so the dose is lowered...and if that doesn't work, they take you off of the pill and maybe give you a break for a week or two before putting you back on it.  I will go back on March 18th, 25th, 31st and April 8th for blood testing for the trial. This is how they will track our phosphate levels. During this time frame, I will stay here in Texas close to MD Anderson.

 I will be on a very strict diet. No more chocolate peanut butter cups from Roll With It :-(.........no more wheat products, milk products, chocolate, etc. Basically a gluten free, soy or rice milk only, chicken, steak, lots of fruits and veggies.  Thank goodness I have been "filled in" about stores like Sprouts, Trader Joe's, Whole Foods, and even Walmart has a lot of organic, gluten free stuff. Also some Mexican grocery store that has awesome veggies at good prices. We'll have time to start it, ask questions, and even see a nutrition specialist at MD Anderson if I choose to do so.

 I will come home for a month before returning May 6th for blood work and to see the dr.  There will be appointments added into all of the above dates but for now, this is all I know about. Probably lots of vision checks will be added and visits with Dr. J, too.

We are staying in Tomball, Texas but it is just as crazy busy as Houston. I actually feel like I AM still in Houston. It will be a bit of a drive into MD Anderson but we are staying with Linda Burgener (a native of my hometown and whom I have known since...like forever) who is gone on business right now so all we have for company is her dog, Blondie Kate. She's a hoot so far!!

I'll keep you all posted as much as possible. The trial MAY cause fatigue, slight nausea, and maybe some hair loss. Everyone is different so I will meet it head on WHEN and IF it happens to me!!

Feel free to send cards, letters, etc. to us at Patty Corcoran  c/o Linda Burgener at 11740 Northpointe Blvd., Apartment 2803, Tomball, Texas  77377.

Prayers are needed all the time.

God Bless~~you and me!

Patty



Tuesday, February 17, 2015

Clinical Trial Soon!

Well, Monday morning came and I received a call from my clinical trial research nurse. I have been approved to enter the trial...that is, IF I pass the eye tests, blood tests, heart tests, etc. I will leave for Houston approximately March 1st and we will drive straight thru. Not 100% sure where we are staying yet....the rodeo is going on during this time so a lot of hotel space was booked up long ago. We're working on it and we also have Linda Burgener who has graciously opened up her home to us. It's a 40 minute drive into MD Anderson so it's a big decision if we want to be that far away from the medical center.

The first week is all tests and I would take the first magical pill on March 10th as of right now. As I said before, I take the pill PLUS one to lower your phosphate level once a day for 3 weeks, then you are off the pills for a week. That is one cycle. After two cycles, they will do another CT scan to see if we have had any results yet. If it's stable, I will probably still be on the trial for 2 more months. IF it grows, I will probably be off the trial immediately and look for something else. I have faith it will all be ok and this is going to do the trick to settling things down inside this one nodule between my heart and my liver. O.N.E. N.O.D.U.L.E..........

I will have to go to MD Anderson once a month for blood work and to see the dr. That's a lot of driving but flying every time is just not an option right now. I am anxious to start the trial. Side effects are mainly slight nausea and fatigue. Also slight hair loss in some people. You know me...if it's hot, I'll shave this beautiful head and go "naked!!"  Wouldn't be the first time! ;-)
I am painting so frantically to get my children's book painted. I was up until midnight last night but I painted two pages yesterday from 10 a.m. to 12 midnight. It seems like I should be able to paint faster but it just doesn't work like that. I will say...this book is pretty cool.  MUCH better than the last one. We are looking at doing it in hardback this time. The cost might be $5 more but it's HARDBACK!  It just looks a little better. I hope it doesn't detour people from buying it for an extra $5.  ALL funds go to our Relay For Life team and a part goes to the Cholangiocarcinoma Foundation.

We have a few fundraisers coming up. We have a multitude of vendors that will be at the St. Joseph Multi Purpose Room from 9-12 on March 28th. We will have something for everyone. I think all or almost all vendors donate their commission (or most of their commission) to our relay team. Please mark it on your calendar! Our food is always good so order something and eat BIG! :-)   We will also have (DRUMROLL PLEASE) a second Italian Beef Fundraiser at the VFW on April 24th. Not sure on the time...probably 5-8 or something like that. It would be nice to get a band or someone to donate their time and play some tunes.....HINT HINT to anyone out there who might know of anyone.

I mainly wanted to update on the clinical trial. I will take this journey down to Houston and step by step, find my way back to Olney after I am "settled and the trial is working well in my body" and I will then just travel to MD Anderson once a month for checkups.  Prayers are always encouraged and  appreciated!!

The Feeding To Heal chemo program is working amazingly well. There has been a change where you sponsor a day and just pay $40 to feed the chemo patients. SO much easier than taking breakfast....then taking lunch. RMH will provide it all for such a reasonable cost!! Thanks to RMH for allowing me to start this program, to Mary K. Kocher who nudged me to get it started, To Debbie Lynch who is there to help find a donor when I am getting low on people signed up AND to ALL of the people who have/are donating to this worthwhile program.  I couldn't do it by myself so once again....."It Takes A Village."

I will keep you posted on this never ending cancer journey as it takes a turn here and there. I am blessed to be able to say I am starting my fifth year as a cholangiocarcinoma survivor! I AM BLESSED!!!! I AM A SURVIVOR!

God is Good ALL the time~~
Patty Corcoran

Sunday, February 15, 2015

Just A Small Update

I am trying to collect and gather all the info I can on the clinical trial I will be on. It is taking the clinical trial pill for 3 weeks straight, then off a week. That is considered one cycle. Then, we would start it over again...and again until the one lymph node that is located between the liver and the heart (close to the aorta). Just one nodule that wasn't there four months ago. It wasn't found on a CT scan that was done in December......so either it grew very fast or the CT just didn't pick it up!  THAT is why I like a PET scan.....it makes the nodule light up like a light bulb! I tried to "pin" my dr down and I asked "So...what is the percent approximately that this trial is going to work....he kinda did the "Well, we have hopes that it will work"....(not good enough for me as an answer). So I asked "Are we talking you're 100% sure it will work? ...70 % sure it will work?" He said he is very confident that this will get rid of the lymph node activity and it WILL do the job. He stated "I can't tell you I am 100% sure but I can tell you we are seeing some good results and I believe it is our best option."  OK...that's good enough for me as an answer.  Since I am on blood thinners, I am totally NOT eligible for the immunotherapy trial which I really had my eyes on. A lot of cancer patients have no problem with their blood/cancer but there is a handful that have a clotting problem and need to be on blood thinners like me.

I talked to the clinical trial nurse Friday afternoon and she said insurance has already approved me for the trial and what insurance does not pay for, Novartis (the drug company) may help with that. You have to be monitored pretty closely the first month for your phosphate level (and you take a pill daily to keep your phosphate level in range) and I will be on a low phosphate food plan. Hopefully, at the MOST, I won't have to stay in Texas more than six weeks. Then, I will just go back monthly to Texas for two days (probably a scan and blood work one day and a dr visit the next day). I will go back to Texas monthly for as long as I am on this trial. There are lots of side effects but a friend of mine has been on the trial for almost two cycles and she has just had fatigue and slight hair loss.  Some of the worst case scenario side effects are blindness, liver failure, organ failure....you know....not anything too bad to worry about, right?  About every drug I take have bad side effects if you read the papers from the pharmacy. It's a chance I will take as I have all the confidence that they will watch me so closely for bad things to pop up. MD Anderson has already met their quota of 10 people in the trial, so they had to get permission to enroll more patients. It was just approved this past Friday so there are a handful of us waiting to get started. This gives me hope that Dr. Javle has some evidence of positive results .  I told the clinical trial nurse that I searched this drug on the cholangiocarcinoma.org website and only one person talked about the trial and they had to go off the trial and died two months later. She said they have had atleast two on the trial right now who have had a good response in two months.....so with that, I will step into the unknown land of a clinical trial and leave it all up to God. It is a phase 2 trial so they have some of the kinks out of it.

As we were getting ready for our past trip to MD Anderson, I was a little worried we had no one signed up for March for the Feeding to Heal food program at RMH. I prayed to God to help me fill the weeks up in case I did need to stay in Houston for a lengthy stay. I posted on a Sunday morning and by Sunday night, I was booked until almost March of 2016!!!  Tell me my God is not an awesome God! I thank each and every one of you for stepping forward to help out this program that feed the chemo patients at RMH!!  Tim and Darlene Garrett are graciously supplying breakfast snacks for the Monday morning patients who are half day chemo patients. Thank you!!

Dr. Javle has stated many times that I don't have terminal cancer anymore (I have lived too long for that) but I have a chronic cancer and we will blast or tackle those little things as they arise. He is confident I will be here for awhile. But not even he knows the answer to that really. I truly believe it's all in God's hands at this point.....I am thankful to have such peace inside of me. I am thankful to know God is right beside me ALL the time!

Pat and I flew to Houston this time for a break from driving. We connected with our favorite "taxi shuttle" man named Moh. I have missed him and we caught up and talked about all the people I have referred to him. He thanked me over and over but it is the person being chauffeured that is blessed. Moh is such a spiritual man. We are blessed to have him planted in our life...even if only for once or twice a year.  We told him we would be coming to Texas for a stay and he just said, "If you need ANYTHING...you call me. I mean anything...not just a ride in his new Lincoln MKZ".  It touched me so much how kind he is EVERY time and I teared up. He said "NO TEARS! What are you crying about? I told him I was just humbled by his heart and how he is there to help us in any way. He said "PATTY KICK CANCER'S BUTT!!" and he said repeat after me!! PATTY KICK CANCERS BUTT!!  So, I will give it my best shot at kicking it. Anyone and everyone knows I hate losing. Whether it be a foot race...a task at my job when I worked...or coming in FIRST at the Relay For Life for the most funds raised in 2014, I don't like losing!!   We are SO blessed by all the people who have helped us with our time in Texas. Bruce and Deb Schonert (and Erika)are Angels to us and we have ate a lot of meals at their house and ate a lot of meals out (that usually always include dessert ;-). Linda Burgener is always there with a smile and offering us a place to stay. We have the Morris Family we have stayed with. They are wise in more ways than one and their kindness to complete strangers is something we all should take notice of AND be a model of.
                                                The Rotary House where we lodge at times
                                                        Serenity place at the lodge
                                 One of the MANY University of Texas Medical Center buildings
                                  Flowers? When we are expecting 3-7 inches of snow tonight in Illinois????
                                         The one and only....The GREAT Dr. Milind Javle
                                                                      Moh and Pat
                                                                       Moh and Patty
                                                               Moh's new ride  :-)

So, as I close this post. I ask for prayers that this trial goes smooth and with no problems. I will leave you with a few pics of our trip. It's been awhile since I have taken some and it also gives you a glance at the GREAT Dr. Javle who is known from far away places for his unlimited knowledge in cholangiocarcinoma.

Tuesday, February 10, 2015

Just a Small Curve Ahead....

It was a lengthy visit with Dr. Javle.  My tumor in the liver is stable...the nodules that were of a concern in the last scan pretty much resolved on their own. Everything looks good.....EXCEPT a small lymph node between the liver and the aorta/heart.  It is lighting up so he thinks instead of waiting for it to get any larger...or go elsewhere that NOW is the time to get that little monster child taken care of. He is looking at a couple of clinical trials and will call me in 2-3 days with a game plan. He is leaning toward a pill form clinical trial and will also take my case to the tumor board to see if another dr has a better suggestion. Dr. Javle is VERY confident we can take care of this.....it might mean staying in Houston a month and seeing him once a week....then I would have to go to Houston once a month. It's still in the air but I will keep you updated. It's not great news but I am calm and God's got this. It's gonna be just fine~~  I will update later as I know more. Gotta go
catch my flight!!

Adios~

Patty

Friday, February 6, 2015

A pretty good fundraiser!!

Wednesday of this week, we had our first Italian Beef Fundraiser at The Gypsy in Olney. Even though there was a little snow.....we had over 90 carry outs and made more tips this year so as always, anyone who came or got carry outs, was very generous!! THANK YOU ALL WHO ATTENDED!!
We plan to have a second Italian Beef at the V.F.W. the last week of April on Friday night. Keep it penciled on your calendar please!!

I have furiously been drawing and now painting the 18 pages in my new book. The front and back cover are painted. I only have almost 5 pages but since we are leaving Sunday for Texas and won't return until Tuesday evening, I can hopefully tackle it as soon as I get back and get them to the printers. Jenn, my oldest daughter, after reading the story and looking at my drawings, stated this was way better than the last book!  I tend to agree with her. Stay tuned for updates.

So, we fly out Sunday around 4:30 and get into Hobby at about 6:30. Moh, our driver will pick us up and we will stay at The Rotary House which has a walkway to MD Anderson. I will get my blood work done at The Rotary House on Sunday evening. This means I don't have to go to labs at 6:30 on Monday morning. My scan is set for appr. 9:30 and we should be done for the day by 11:30.  I see Dr. Javle at 9 am Tuesday.  Our driver picks us up at 11 and we fly out at 1:30. It's all like clockwork and I pray I come out of there with good news.  All of us CC patients who have had radiation TWICE/chemo all know you feel those glitches, pulls, a small pain here or there...and wonder, "What was that all about?" But I just have to march in there like a soldier and know that no matter what, God is right beside me and Through Him, ALL things are possible!

I ask for prayers that my report is a good one! And I ask for daily prayers for a cure for ALL cancers! You just have no idea about what it can do to a body completely until you go through it. If YOU are reading my blog, you mean something to me. Some of you I may have never met, but I have learned you can love a friend without ever meeting them! So, thanks for checking in and reading my blog...which is, BTW, over 112,000 hits now. Around Feb 21, it is my 4 year anniversary date for having this monster. 4 YEARS! God is Good ALL the Time....ALL the time, God is GOOD!!

Hugs,

Patty Corcoran

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