My visit with Dr. Javle

It started out a great day....turning in our keys to "the tin can" and driving to MD Anderson and talking with Pat how this was such a pleasant trip compared to 16+ months ago when I had radiation. Feeling so blessed as I met Danna Grisso Cowly (another CC patient younger than me). We didn't get to visit much due to me having the first appointment of the morning but it was still nice to see her.

On with the visit. I officially have two months off from seeing dr's but I do need to get lined up for my blood test (every two weeks) so I can monitor my blood and how thick/thin it is. No more radiation...no chemo....just enjoy the holidays and try to lose some weight!

Dr. Jave stated how well I seemed to be doing and I said..."tell me Dr. Javle....from the time a cholangiocarcinoma patients sees you for the first time at diagnosis...to the end of their life...what is the average time a person lives?"  It didn't take him 3 seconds to answer "No more than a year in most cases." He then state..."but you...you're like a pioneer for cholangiocarcinoma....you've been here for 33 months."  We talked about how Mayo Clinic and MD Anderson have actual research labs now JUST FOR cholangiocarcinoma. This is HUGE...and pretty recently that it happened.  There are now Registry's that keep track of patients....

Dr. Javle was astounded that my blog was up to 89,000+ hits....I also told him our Relay team donated money to the Cholangiocarcinoma Foundation for the past two years.
So......if you have CC and think....what is Patty doing different? I can only say that my faith has grown so much and also the circle of friends/prayer groups that pray for me throughout the U.S. is astounding.  From Kemah, Texas...to Holy Ghost Catholic Church in Houston....to New York...Illinois....I can't even begin to name the states that prayers are coming from.

I try to eat a little better...then I have a bad day and eat not so good. I exercise...but not like I did before my diagnosis. I don't drink enough water......so I am not doing anything THAT extra but I am still here on this earth. I am not big into supplements....I do eat dark healthy chocolate when I think about it. All I can say is prayers do work.....and the fact that God has guided me to the best place in the U.S. for treatment. I prayed in the beginning of this cancer journey for time...more time with my family...and that I had no pain for as long as possible. I have been SO blessed to not have pain and I am living longer than most CC patients who cannot get a transplant/resection. My blood work shows excellent kidney and liver function. Dr. Javle states I have no jaundice in my blood (which is common in this cancer). My alkaline phosphatase is 2 points from normal range. My CA 19-9 (cancer marker) was over 800 when I was first diagnosed....now it is like 14. That is in the range of a person without cancer. BUT.....even if the radiation works and stops this little part of new growth.....I will still have cancer. I still have a few cancer cells in my body (just not active.... and it will just be a guessing game as to WHEN or WHERE it will pop up again. Dr. Javle states I have a chronic disease. And that we will treat it as it comes.....whenever and wherever it pops up again. The liver is one of the hardest organs to shrink with radiation....with my tumor from radiation 16 months ago...it just became necrotic...which means dead...but as I said, then a little new piece started to grow (off the old tumor)...so we cooked it this time. It will be a waiting game until January to see if it worked. Even then, it might be a little too soon to tell.

So.....the journey marches on. I will march to the beat of a drum until January. I will praise and thank Him every day!

 Within 24 hours of being home, I have saw all 4 1/2 of my grandchildren. I have saw all five Cummins/Corcoran girls. I have seen my mom as she brought supper the day we got home with a coconut cream pie. I am blessed beyond words. My cup runneth over.......and I will not complain nor do I have anything to complain about. I understand all things happen in God's time...not ours. So many good things have came from getting this cancer.....Did I wish for it? Goodness sakes no, but it is in me, the more time I ask why...I say why not me. No type of cancer is like going to an adventure park....but it is what it is. I refuse to take whatever good days I have... to have pity on myself. And at the rate that God is answering prayers on my behalf, there's no guessing at when the day I take my last breath may be.

May God be with all of the CC patients...and all cancer patients. May God be with each and every one of you this Thanksgiving...and every day in between!

Peace be with you~~
Patty Corcoran

Done and over with....almost!

I have had both of my radiation treatments for the day (on the very last treatment, just as they started "cooking" me, The Eye Of The Tiger song came on.....I thought it was appropriate!!.....Now I can take off the clear tape that holds the "BB like" balls under that tape which also have a big red X made by a sharpie like pen. This had been on me in three different spots...one on the upper left rib(kind of under the armpit and down a little), one on the upper right rib (same way as the left), and in the middle of my "boobs" ;-) but to the right some and just about where your bra baseline is. Hope that is not too much info..... these are some if the ways they identify how to "line me up" with the machine. Anyway....the bell ringing tradition was after the last treatment and BIG hugs to all 3 of the guys. In the whole time I have went to MD Anderson, I have never had a bad experience or a grumbled worker. It's a place that gives hugs, gives words of encouragement, and most of all....HOPE!
Here are the last two of the radiation team that I wanted to get a picture with. They are all just so great!! Then, there's Pat and I by the bell...and a few dorky looking ones of a bald lady......OH, THAT'S ME!!  This radiation journey has ended....and tomorrow is a visit with the great Dr. Javle. Then, in the car we will RUN to get started back to Illinois. See some of you Wednesday evening ...I for sure am seeing little Braeda and family plus Samantha & Chris...and I have a coffee date with little Amity on Thursday morning(and Jenn), and watching Leslie's kids on Friday with my mom. I am probably done posting unless I find a really worthy pic to take on the way home.
Home again, home again...jiggety~ jig!

The Radiation Crew

Pat and I at "The Bell"

THE BELL RINGING SITE!

RING!!!

RING!!

RING!!

Time is closing in......but it has been the best time!!

 

Friday evening
It has been a busy week to say the least. I went to LUSH which is where Erica Schonert works. Her mom, Deb Schonert and I had mini facials. I also bought a few stocking stuffers. Pat and I hit up a liquor warehouse called Spec's to see if they had a certain wine for X-mas presents. It was also full of cheeses, olives, salamis, and you could also have a sandwich made with fresh bread they bake there. Awesome place!! Oh....and Dave Brooks.....they have every kind of ale under the son!!! Pat was in another land of happiness!!

So, today ends the week of treatments and Monday will be my last day...and the bell ringing day.  Woop! I have seen the team from the last time I was radiated. I ran into the guy as he is in the same area as I get radiated on but he has his "own machine" as the say. And Danna, the lady from last April/May also stopped by to give me a hug (two separate times). It means a lot for them to do that as these guys are like "Wham, Bam, Thank Ya Mam"....and out you go as they have someone else after you and some else after that.....and the line goes on.....day after day after day. Each person with a different story....some want to converse and others just want you to bug off as they feel like POO!

I also saw Dr. Das today. This was the last time I will see him before going home. It's all a waiting game as far as whether this radiation worked or not. It will keep working for about 6 weeks. So, my last chemo in Effingham was September 30th. I will not have any until I come back in mid-January for my PET scan to see what's going on inside of me. No chemo until then......last year....things didn't look too hot and they started me on a new chemo. THEN, I went back 3 months later and it showed the tumor was necrotic in places and also showing shrinkage. So.....I will try and stay focused and positive that the cancer is not spreading or dancing around all over the inside my belly. Dr. Javle says there are still tools in the toolbox so if it didn't work, we are still hopeful something else will slow or stop this monster. I believe the radiation will work but it might take a couple 5 to 6 months to see the results that we are looking for. That is basically how it worked last time.

Saturday:

Pat and I spent the day running around....shopping a bit...hunting for gunpowder (no luck there) but we did find some bullets our pharmacist is needing. Brycen-you're the best!

We had supper at David and Rosselyn Morris' house. Oh man.....best meal we have had in a while and the cherry pie....mmmm...hmmm!!!! But best of all, they are just great people to visit with. Telling stories from their college days to me talking about my grandchildren back in Illinois. Yes, God has sent this pair of Angels front and center for us to meet on this cancer journey. I truly believe God has planted them in our life....and I do praise God for that!

Sunday:

We will get our laundry caught up...pack a little....and sometime in the afternoon, we will visit The Schonert's for a quick goodbye. They have just been fun to be with....and I am so glad we had time to spend with them.


So, Tuesday, I will see Dr. Javle at 8 am and then we will start the journey home. We will probably stop about 5 hours from home for the night and come on in to Olney on Wednesday. 
We have met some new friends, became better acquainted with old friends, and Pat and I have really had to connect with each other to keep from killing each other in such close quarters.....not really...we like each other!! :-)

I know I say it a lot but "Thank You" to each and every one of you who have thought about me, prayed for me, sent me a card (I received 39 cards as of today....and some even had a surprise inside!!), flowers, Edible Bouquet, phone calls, messaged me on Facebook....the list is endless. But most of all, my THANKS goes to God along with many praises! I am leaving you with several pictures from the past 2 1/2 weeks. Enjoy~~

NANCY & JACKIE MORRIS FROM OLNEY AND THEIR COUSIN WHO IS JUST A GEM, SHIRLEY PATTERSON

LUSH WHERE ERICA SCHONERT DOES A FANTASTIC JOB OF "DOING HER JOB!!"

DEB SCHONERT & I GETTING MINI FACIALS AT LUSH

AHHHHH......THAT'S ME!

BEFORE I SAW ERICA "IN ACTION" AT HER WORKPLACE....I HAD NO IDEA HOW WELL SHE DOES HER JOB.  SHE IS FANTASTIC AT WHAT SHE DOES....AND LOVES DOING IT!!!

ONE OF PAT'S DISTANT COUSINS THAT OWNS A BAKERY. YUMMO! THEY HAD JUST MET THAT DAY FOR THE FIRST TIME. NEILSON'S BAKERY...FYI FOR THE HOUSTONIANS.

PAT AND MARY LOU PRINCE, THIS IS PAT'S 1ST COUSIN THROUGH GENERATIONS.

OUR VALET PARKING AREA WHERE I GET DUMPED OFF FOR RADIOLOGY APPOINTMENTS AND RADIATION IN THE BASEMENT.

SMACK ME IN THE HEAD...BALD HEAD....FOR NOT KNOWING THIS SWEET GIRLS NAME. SHE IS JUST AS SWEET AS SHE IS PRETTY. THE MACHINE IN THE BACKGROUND IS WHAT ROTATES COMPLETELY AROUND MY BODY TO THE SPECIFIC AREAS I GET ZAPPED. AS I HAVE SAID BEFORE....THIS MACHINE WHICH HAS A CT SCAN AT THE OTHER END IS THE ONLY ONE IN THE WHOLE UNITED STATES.  THIS MACHINE USUALLY HAS A WAITING LIST AS IT IS NEEDED SO MUCH TO HELP PEOPLE LIKE ME.

THIS IS ANOTHER TECH THAT DOES THE RADIATION. THERE ARE TWO MORE THAT I CAN HOPEFULLY GET PICS OF ON MONDAY....THE BELL RINGING DAY! WOOP!

THIS IS SWEET DANNA, WHO RADIATED ME LAST TIME (AND SHE ENJOYED THE WAY SHE KNOCKED ME TO MY KNEES WHEN SHE RADIATED ME OVER 6 WEEKS)!  JUST KIDDING, KID....YOU KNOW I LOVE YA!  I HAVE SEEN TRAVIS WHICH WAS HER SIDEKICK BUT HAVE NOT GOT A PICTURE...HE IS ZOOMING IN AND OUT GETTING PATIENTS FOR ANOTHER MACHINE. THESE GUYS SEE THOUSANDS OF PATIENTS A YEAR....SO WHEN TRAVIS TOLD HER I WAS BACK....SHE CAME TO VISIT ME TWICE BEFORE GETTING MY TREATMENT. HOW GREAT IS THAT....THAT SHE WOULD STILL REMEMBER ME.....  :-)

THIS PICTURE IF FOR ONE FAMILY IN OLNEY.....ALTHOUGH IT IS STILL SPELLED A LITTLE DIFFERENT, IT MADE ME SMILE BECAUSE THEY ARE SUCH A GREAT FAMILY AND THEIR DAUGHTER, JORDAN IS BEST FRIENDS WITH MY DAUGHTER LESLIE. NANCY AND MIKE KUYKENDALL HAVE BEEN AWESOME AT SENDING ME CARDS...AND ALWAYS ASKING HOW I AM DOING.

I LOVE THIS FOUNTAIN EVERY TIME WE PASS IT IN HERMANN PARK.

CHRISTMAS BEER/WINE SHOPPING...I PROMISE. AND YES, DAVE BROOKS, THERE MIGHT BE A FEW SURPRISES IN THE BOX FOR YOU :-) !!!!  THE PLACE CALLED SPEC'S WHICH IS A WAREHOUSE WITH NOT ONLY ALCOHOL, BUT OLIVE BARS, A DELI AND THEY MAKE SANDWICHES RIGHT THERE....BIGGEST PLACE I HAVE EVER BEEN TO THAT HAD SO MUCH BOOZE!   AND HOW MUCH WAS FOR ME YOU MIGHT ASK?  NONE. 

PAT AND I PARKED AND TOOK A WALK DOWN THIS PATH AS WE WERE WAITING IN BETWEEN APPOINTMENTS. SO PEACEFUL...A GOLF COURSE ON THE RIGHT AND ON THE LEFT, THEY ARE BUILDING A JAPANESE GARDENS IN HERMANN PARK.......

I SAVED THE BEST FOR LAST! THIS IS ROSELYN AND DAVID MORRIS. WE ARE HAVING SUPPER AT THEIR HOUSE IN THIS PICTURE. WE ATTENDED THE CATHOLIC CHURCH LAST WEEK THAT THEY ATTEND AND WILL BE AT THAT CHURCH AGAIN IN A FEW HOURS. WE MET THROUGH SHIRLEY PATTERSON OF GALVESTON. GOD IS SO GOOD!! HE IS SENDING PEOPLE MY WAY FOR A REASON...AND I THANK HIM.  WE WILL STAY WITH THE MORRIS FAMILY NEXT TIME WE COME TO HOUSTON IN JANUARY. I MEAN...WE WERE TOTAL STRANGERS AND NOW WE ARE STAYING AT THEIR HOUSE.....THEY ARE JUST BEYOND WORDS IN GENEROSITY, WISDOM, TRAVELS ALL OVER THE WORLD, FAITH, STORIES TO THE MOON AND BACK (ALMOST). WE GENUINELY THINK THEY ARE JUST TWO OF THE MOST WONDERFUL PEOPLE.....AND DID I MENTION SHE MAKES THE BEST CHERRY PIE EVER....EVER!! SORRY MOMMA ;-)    

THANKS BE TO GOD!

Hugs!
Patty Corcoran

Feeling Blessed this Veterans Day!

First off, Emily Walsh....wherever you are....email me at pkcorc30@otbnet.com..... I do not have an email address for you.

One week from today will be my last treatment day. Then on Tuesday, I will see Dr. Javle at 8 am and from there, we will head straight for Home Sweet Home! I am done with both of my treatments today and Pat is resting. We had such a lovely weekend and it just flew by.

Saturday morning, I met up with Deb Schonert to go to The Nutcracker Market where they had all kinds of gifts for Christmas....from food to baby clothes to ornaments....to wine.....jewelry....everything under the moon!  Pat went to a gun show at a George Brown Convention Center and we all met up later at the building site of Bruce and Deb's new home to be. We were just going to help them pick up sticks and clean up the ground some...beats sitting in a pop can (our camper) all day. That evening, they treated us to supper at a nice restaurant. It was 9 pm before we got home that night!!

 Sunday came, and we went to Holy Ghost Catholic Church and met up with a new couple who we were introduced by Shirley from Kemah, Tx. This church is twice the size of ours in Olney and we really enjoyed it. Afterwards, we met up and introduced ourselves in person and went to grab some brunch. They asked us back to their house and we visited for quite some time. Very interesting people and full of stories to tell. We enjoyed our visit and plan to have supper one night this week at their house.  We came back to the tin box about two and then got a text from Bruce and Deb to  eat pizza at their house. After finishing the evening with cake and ice cream, we were back "home" by 9 pm.

So, today (Monday), after my first "cooking" at MD Anderson (at 6 am), I told Pat I was beat and went back to bed to sleep 3 hours. I probably overdid it throughout the weekend but I feel wonderful now and my energy level is back up.

I asked the doctors if I could get the treatments in Kemah where MD Anderson has built a new facility and close to where Shirley lives but Dr. Das says the type of radiation with the precise positioning..placement...and beams of this machine makes it the only one in the US at this time. So...NOWHERE else in the United States has this machine......I am thankful for MD Anderson!!!

So, I have had 16 of the 26 treatments that I am getting. I feel better than I have before I had cancer. Why? I can only answer with one word....God.  I am having no side effects from treatment....no nausea....no tiredness like last time I had radiation....I just feel wonderful. When I am at MD Anderson, I run down the basement stairs to where I get radiated....then I run up the stairs where I go to my car. I could take the elevator but why....the energy inside me is crazy but I will take advantage of this energy and be grateful for it!!

So, on this Veterans Day, I thank God for my husband who is a veteran, who is my caretaker, and my best friend.   Cholangiocarcinoma may be planted in the middle of our life, but right now, we are just walking around it...ignoring it as much as possible, like holding hands walking down the sidewalk and letting go only to get past a pole and join hands again.  so we can enjoy every minute of every day, while we can. I try (as much as I can) to think about living and not dying.....God didn't give me this good of a place to be at and to feel as good as I do...to only waste the time boo hoo-ing over when am I going to die. Die.......who said anything about dying? :-)

One last thing, while we were in church yesterday, I felt as if the priest was talking just to me. He talked about life... this one on earth. And...about death. Yes,  we are leaving family and friends, but the priest compared it like this: right now, it is like one grain of sand in the dessert here on earth....but when you go to the "afterlife" it is like a dessert with a gazillion grains of sand....it is just SO much bigger than we can imagine as far as being the best life. I believe it is better than we can humanly imagine....but one thing I know for sure, that is where I want to be....somewhere so wonderful that God created for us. I know this isn't sounding the way I really wanted to present it....but I am not a priest.....so try to "get it" like I did.

So, in closing, I want to thank all of you who have sent cards, facebook messages, prayers,  texts....you ALL mean something to me. But most of all, I thank God...who, as he promised one day when this first started (while at Mayo Clinic) He is Right Beside Me!!  Do you know how good that feels? I do....and it is irreplaceable!

Hugs to you all. Happy Veterans Day to everyone!

Blessings!

Patty

Feeling Blessed This Hump Day!!

Sunday, Pat and I went to Corpus Christi Catholic Church for mass. A lady came up to me and said she had pancreatic cancer and gave me her phone number. She said if we needed anything, to feel free to call her. A total stranger....paying it forward as a servant of God. How many of you would do this? I could tell she didn't feel well but she offered....she was paying it forward. God Bless her!

Monday was a usual radiation day starting at 6 am for my first treatment. We usually go back to our tin box after that and wait until it is time for the next...which has to be 6 hours in between radiation treatments.

Tuesday, I had radiation, a visit with a fill in dr for Dr. Das (the oncology radiologist), than I saw Jackie which is Dr. Javle's PA. THEN.....we drove around for an hour....Pat dumped me off at the main building so I could get my bloodwork done....to check my Anti XA. It has to be done precisely 4 hours after I inject it in the am. Needless to say...it was a busy day!  For the ones who do not have Facebook, I will have to tell you I was quite sassy that day and Dr. Das' assistant was singing "I feel good...and I responded....you wanna do a flash mob? They asked what that was and then they realized they knew what it was after I told them about the commercial on tv. So...I dared them to do it with me.....out in the middle of the entrance to the Radiation center.  Two of the nurses got up and also two receptionists (two were men) and went out clapping and I did the 1 and a 2 and a 3.....clapping, we started singing "I feel good...na~na~na~na~nut "you know what I mean now".....we did a silly dance....not in sync but we danced......and we had people stand up and clap for us and it put a lot of smiles on peoples faces. I didn't tape it but I sure wish I would have. It all happened so fast.....but it was great! :-)

Wednesday, I had both treaments done by 1 pm. So Pat and I had the rest of the day to relax. In between treatments, we came back to our camper and had breakfast. Pat and I walked 1.3 miles....I felt pretty good. I received a call from Shirley (the lady that lives at Kemah) and she is very concerned we are staying in a camper. I assured her it is very nice and bigger than a hotel room. It's by far not the Hyatt, but it is acceptable. She also gave me the number to a lady who lives close to MD Anderson that I called and talked to. She invited us to stay with her and her husband any time we are in Houston. We are also going to the Catholic Church they belong to called Holy Ghost Catholic Church. They asked us for brunch after the 10 am Mass.  Then..Sunday, we are also meeting up with Deb and Bruce Schonert for pizza.  We are so blessed with people here in Houston lending a hand to make our stay a little better and maybe pass the time a little quicker. God is sending many people our way and I praise and give Him thanks!

So, as I sit here....I have had 10 treatments and no side effects yet. I have had a couple of lil' stabs where the tumor is...I can only hope it is angry and it starts to shrink or die! In 13 days, I will receive 39 Gy's of radiation (1.5 per day). The place they are blasting/cooking is smaller, therefore, it needs less Gy's. Last April/May, I received 50 Gy's in 26 days (1.8 per day). So, I am receiving a little bit of a smaller dose than before, and hopefully that is why I have not had any side effects. So, I have 16 treatments left....each passing day I give thanks and praise to God for keeping me this healthy.....I am ever so thankful to Him!

Yes, God is with me no matter where I am. In Illinois...in Texas....He is there...right beside me.

I'll update over the weekend or the first of next week.

Hugs!
Patty

 

My first two days of radiation are done.....

Well......we are down 2 treatments per day (4 total) plus blood work...doctor visits...it is a back and forth trip from our tin box to MD Anderson. I am a little red where they have radiated but all in all I feel great. On day two before my second treatment, Pat and I decided to walk around the lake on the campground we are staying at. We walked about 2 miles altogether and then at treatment I was all of the sudden...WIPED OUT!  The technician at MD Anderson said "NO! NO! NO!...we do not want you doing that!! REST! REST! REST!  So....no more walking for me....But I have felt so good so far.

Saturday we drove to Galveston Bay where we met Rylan's (my son in law) Aunt Nancy and Uncle Jackie from Olney. They were staying with a cousin and invited us for brunch. Boy did they ever....there was more to eat than what I have had in some time. A beautiful spread of coffee cake, fruits, bagels and strawberry cream cheese, eggs, bacon, juice, coffee....all served overlooking Galveston Bay from her kitchen table. When I say 'Her" I guess I should explain I was invited to a lady's house whom I had never met. Her name is Shirley Patterson and it didn't take long to find out she was a sister to Don Murray from Olney. She is related to my sister in law Sheila Kermicle Stoltz (distant but still blood related). She was the most eloquent, loving, and ever so pleasant of a person I have met in a long time. The kind of person that just calms a person's soul.  That does not even describe her well enough....I just left her house at 5:30 (yes, we were just going for brunch :-)   but I left with a calmness in my soul that just felt so wonderful. She was sent to me...this I am sure of. We will see Shirley again as we brought some Claremont chowder and she loves it so we will take some for her to enjoy. Her house is beyond beautiful and it is just so welcoming. What a gem!!

So, next week brings 10 sessions of (radiation)cooking the tumor  (2 per day with atleast 6 hours between them), blood work on 2 separate days, 3 doctor visits,  ummm...I think that about sums it up. I also take Xeloda pills (chemo) morning and evening. Let's pray for few to no side effects such as nausea or low blood counts that could halt the radiation a few days. Let's pray I do not get so red that blisters start to form on the small area they are radiating. I also pray for strength and that I still have some at the end of the week. I thank God for all my friends and family back home praying for me....and to Amy (Curry) Sherman who is running in the NY Marathon tomorrow. May you run safe and swiftly in that little tiny body of yours!! Hugs to you for running in honor of Skippy Bishop and "moi".....how honored to be picked as you run your heart out for us!! Bear Hugs!!

Peace be with you all!!

Patty Corcoran