Thursday, October 31, 2013

First day is over.....

My first day of treatments/bloodwork are over. I am SO SO amazed at how precise they are with the machine/taking a CT scan each and every time I get radiation. So much more precise and riskier than before.....but hey...what do I have to lose?  I trust God is guiding these people to guide that machine to the millimeter to get that tumor blasted and not my heart or esophagus. I see Dr.Das, my radiation oncologist tomorrow....so it will be nice to ask a few questions I have and see how he thinks things are going. Probably too early to even guess how it is going. Our camper has a leak in the moon roof but since it finally stopped raining after about 7 inches of rain, they said they will get it fixed promptly. I have had 86,324 hits on my blog as of this very moment. That is over the past 2 1/2 years approximately. I have met so many new friends and reacquainted with alot of old ones....I am thankful to ALL of you. 86,324.....WOW!

Next week could be the start of what may come of symptoms....I am in good spirits today....I would walk out in the dark tonight but I am a scaredy cat! Pat said he heard gunshots outside the campground sometime in the night last night. That's enough to scare me there's a booger man out there. LOL!!

In closing, I just want to thank each and every person who have e-mailed, texted, Facebooked me, or talked to me at church or in a store before I left for Houston. I am so lucky to have people from all denominations praying for me. I am so lucky to have the best family there for me. I am so lucky to have a husband who is right beside me day and night. Man, he can drive just like all the other crazy Houstonians and he does a fine job at it!! Most of ALL, I am blessed to know God is in my life. He is there to listen to my sometimes whacky conversations to myself.....He is always there....ALWAYS!

Keep you posted. My address is in the last post if you missed it.

Hugs and prayers to you, my brothers and sisters!

Patty Corcoran





Saturday, October 26, 2013

Back in Illinois....for a bit!

So, it was a quick trip to Texas and we will start back on Wednesday and drive straight thru as my first IMRT (radiation) is scheduled for 12:45 and again at 8:40 pm......the second one of the day is knocking on the door of my bedtime but most are by 7 pm....I will just eat early as last time I didn't get even a little nauseated if I ate 3 hours before the treatment.   There HAS to be atleast 6 hours in between the two treatments I get per day. Most of the time, it is close to 12 hours in between sessions. I also have bloodwork weekly and two Dr's I see each week. They want to keep a VERY close watch on me. I did see where I was getting 39 gy of radiation PLUS taking a chemo pill called Xeloda to hopefully help the radiation work even better.

We did find housing while we were down there. We called St.Dominique's Village but they never called back but they only charge like $45 per night. It is where we stayed one other time. It has daily mass and lots of activities....lots of retired priests and nuns. Just a nice setting and very peaceful.......so, on we went for the search of somewhere to stay. Lots of places were already full since this is so last minute. BUT, we did get an offer from where we stayed last time I got radiation and it was $2020 a month plus cleaning fee....OUCH!  So, we check out a place I saw on the internet called Lakeside RV Resort. Pat says its a rustic mobile home park but also has RV's.  We ended up renting a 5th wheel travel trailer (the owners have several that never move and they rent them out plus they have some mobile homes they rent) and we are only paying like $895 plus $100 cleaning fee. It has a bedroom and it can be closed off for those tired days I might have and the travel trailer has 2 TV's, oven, stove, sink, two recliners, table with  benches......we can do this for 2 1/2 weeks. They said if we paid by the month (which was actually cheaper than weekly rates) we didn't have to pay the 17% motel tax that Texas has. It has a heated pool, hot tub, pool tables in a rec room along with workout equipment....I think we will be just fine at being campers! It also has a shuttle that takes us to MD Anderson but I think we will drive most of the time....

So, I saw Dr. DY from Crossroads in Effingham last Monday....after looking at the radiologist report from MD Anderson, he basically said "you gotta do this and stop that little active piece of cancer or it is going to go everywhere FAST". Scared the ever living SNOT out of me. So...when I saw Dr. Javle at MD Anderson, I told him about the conversation with Dr. Dy and he said that is not true, and that we did have options. Then he said...let me show you something. He pulled up the scan showing my whole body and the size the tumor was 2 1/2 years ago and also pulled the one up from last week. The difference was more than what I had ever thought. In the beginning, it looked to be the size of a grapefruit....and now about the size of a pea. The pea size is the active part that they are going to radiate. So....anyone with cholangiocarcinoma knows this is HUGE. I then asked him about two drugs that MD Anderson and John Hopkins are doing their own trial with...using two FDA approved drugs for other cancers. I just saw where a friend (with Dr. Shroff from MD Anderson) got these drugs and then can go home, take them, and just go back for scans every two months. He stated that is definitely a possibility for me after the radiation if the radiation is unsuccessful. So....I still have options at MD Anderson contrary to what Dr. Dy states. THIS is WHY I go to MD Anderson. Once again, Dr. Javle opened a window and let the sun shine in on me. I just felt soooo much better after his "talk".  DY Javle's appointment was at 10:30 am and then the Simulation was at 3. This is where they tattoo me (but they didn't have to...they can use the three tattoos from last year) but they did mark me up like a roadmap and put tape over it so it will stay on until I go back. It helps line me up in the mold they made specifically for my body. Also, last time I could just breathe and they radiated the area...but this time, I have to wear special goggles that show where I have to hold my breath and keep it in between a specific area for what seems like a long time...but is just appr. 12-14 seconds. That is when they are zapping the tumor. They do not want me moving anywhere...not even breathing....it had to be THAT precise. As I laid on the mold they had made for me, the girls told me they had to make sure it was spot on and that behind the window was about 12 people making sure they were getting it JUST RIGHT! That included my radiation oncologist, his PA, and other drs to make sure they miss my heart...what heart?   hahahahahahahaha!

It was a long day and then Pat and I started for home until about 10 pm and stopped for the night. I wanted to be home in time to walk in the Halloween parade with Braeda and Amy. We made it...whew.  Pat also got to help with the Democrats giving out free hotdogs at the end of the parade.

Now it is time to relax, take walks, and get things ready for next week. Our address for the stay is Lakeside RV Resort, 11991 S. Main Street, Houston Texas, 77035. If it were not for ALL the cards I received last time, I think I would have went crazy.....so feel free to drop me a line.  I believe our return date to Olney is the morning of November 19, IF everything goes as planned and there are no breaks in radiation due to blood work coming back bad ....BUT were not even going to talk like that!

I hope this pretty much updates everyone on where we are in this cancer journey called life. Dr's say I am really sick but I am not in any pain, I feel great, and it just makes no sense BUT that God has this all under control. As I waited for my appt. with Dr. Javle, people talked about Fentanol patches...pain drugs....and I thanked the GREATEST Healer of all that I was not those people. A lot of people wish they weren't me with this bile duct cancer.....but I am blessed beyond words that God has and will always be right beside me!!

I will keep you updated after settling in at our RV park.....and at MD Anderson since we will be doing quite a bit of "camping" there also!!

Peace be with ALL of you!!
HUGS!

Patty

Tuesday, October 22, 2013

To Texas we will go........

After meeting with our local oncologist from Effingham on Monday, I had pretty well made up my mind, but he definitely sealed the deal. I think Pat was on the fence but now is on board that we don't have a lot of choices right now. We are going back to Texas for 13 IMRT days with radiation 2 X a day. Pat and I leave in the am and will drive to Lufkin, Tx where we will spend the night and go on into Houston for a Dr appt. @ 10:30 with Dr. Javle and then the Simulation (this is where they do a CT scan and mark with tattoo ink in a needle to know PRECISELY where to radiate) at 3 pm. This will take about an hour and we will start for home. We will stop about 9-10 that night and come back to Olney on Friday sometime that afternoon.

Next Wednesday we will drive straight to Texas and start radiation the next morning. I pray the time in Texas passes so fast as it seemed to drag on (last time) once the radiation started making me so tired and depleted of energy. It was 3 months before I returned back to work the last time I got the radiation. It is SO RARE for a person to be radiated twice in a lifetime in the same area BUT MD Anderson feels this is the right thing for me....and who can question the best hospital for cancer patients. I will march down there, get it all done and hope that monster in me (which has a bright spot they want to put back to sleep for as long as possible) stops getting any brighter and pray it does not spread. I can only worry about the day I wake up from.....put one foot in front of the other and let the rest lay in God's hands. He has been right beside me E.V.E.R.Y. step so far and I have all the faith He will be with me no matter what happens.

We are still looking at apartments in Houston close to MD Anderson. Most want to rent by the month or we could do a hotel which is by the day and sometimes by the week but I like separate rooms and not everything in one room basically. We will get it all lined out....that is the least of my worries.

I will update before leaving for Texas next Wednesday....and during treatments if I am able to. If I don't - my girls will update for me. Feel free....No PLEASE pray for God to give me strength to weather this radiation...to stop this bile duct cancer from going anywhere but where it is at currently.
I thank and give praises to God every day that I feel SO daggone healthy but they keep telling me I am not. God has definitely got things under control.....and I praise Him daily for that!

Pay it forward!!

May peace be with all of you!!

Patty

Thursday, October 17, 2013

Time to think....

My appointments at MD Anderson were today and some good things were in store for me and some things to ponder on. My tumor has shrank from 11.8 X 9.2cm to 11.6 x 8.8. BUT the FDG uptake (brightness of the tumor) has risen a little from 6.4 to 8.5.  My CA 19-9 is lower than 3 months ago being at 19.5 today. I would have to look back to see what it was 3 months ago, but I believe it was 22.6???
So......as I looked at the 3 page report from the radiologist who read it....(it is usually 1 page long and maybe a little bit of a page 2) I was taken aback as it talked about all these nodules and just a lot of jibberish I wasn't used to seeing. I just flat out said...."Dr. Javle, I have never seen such a lengthy and scarey PET scan....like do I have cancer everywhere or just in the liver???" He replied it was just in the liver as it has always been but the radiologist went  into great detail and most do not.

He believes I have a couple of choices...1). Stay on Irinotecan and come back in 3 months and see if the tumor really is getting brighter (which probably means the chemo is not working as well) OR 2). We could try radiation again (which usually doesn't happen with most patients but Dr. Javle has pleaded with them) and since the tumor has shrank, they are willing to do the radiation. Before, they were a little too worried about being too close to the heart and causing damage, but with the shrinkage, they say now is the time to radiate.

I went ahead and made an appointment for October 24 for Simulation (which is where they put tattoo dots to know where to radiate). I can call and cancel the appointment if we get home and change our mind. Otherwise, I just go for the Simulation (which only takes an hour), then go back home for a week and then back again to Texas where I will get 26 treatments....this time, I will get two treatments a day. So, it will take only 2 1/2 weeks to complete it this time instead of the 6 weeks like last summer. The doses will be smaller since I will get two a day but it will still come with the chances of side effects happening a little quicker......hair loss.....already there!  Nausea, scoots, weight loss (woo-hoo)....but I didn't have nausea or the scoots last time so lets hope we leave those out this time also.

Dr. Javle assured me this was a good visit. He says even though it shows the tumor is a bit brighter, he cannot see it on the scan. He says he thinks I am still stable but wants to radiate that lil booger left that is still showing up bright (which means there is still some activity going on in a little piece of the mass).

So, although I was taken aback by the report at first, I know MD Anderson is doing what they do best, making people live longer lives at hopefully a better quality of life.

I also met another cholangiocarcinoma patient from Memphis, Tennessee today. Her name is Becky Couture and we have connected through the cholangiocarcinoma website. Her family was lovely and she also had good reports from Dr. Javle. God is GREAT!!!

I thank God for being beside me today.....for giving Pat and I such a great family to "camp with" for the past 3 days. It seems like we have known each other for years when this was the first time meeting Deb's husband. What an adventurous fun loving family!  God put them on this path for me....if I get tired as I did the last time, I could hardly do much besides eat, sleep, and take care of myself. I have a feeling if we stay with them for the radiation, Deb and Erika will be  mother hens to me. Yip....God knew where to lead me. I am thankful and also thankful my husband is so good at driving in this Houston traffic.....I'd have wrecked the car a million gazillion times by now.

Well......it's almost 11 and most of you know it is WAY past my bedtime. Just wanted to update and thank you all for the prayers!! Keep 'em coming!!

HUGS!
Patty Corcoran

Monday, October 14, 2013

It's that time again......

Welp.......we're heading to Houston tomorrow (and it shows rain all day.....I HATE flying in rain!!!). It has been a busy past 7 days as mom had a so called minor surgery last Thursday and was released on Friday to go home. I stayed Friday night at her house with her just in case she would fall. She did great and even planned on going to church on Sunday although I was leary she was ready. Sunday about 1, I get a call from my sister Sarah, and she is on her way to moms as she is feeling short of breath. I call mom and she said she felt like she had bricks on her chest....so we were adamant that she was going back to the e-room in Vincennes. She had fluid buildup around her heart and lungs. They admitted her and started the Lasix at 50 MG and boy was it draining FAST. About 100cc per 5 minutes. Today, they released her and she is at home. Please say an extra prayer she is healing while I head to Texas.

Staying with the Schonert's!! Deb and Bruce have graciously opened their home up to us. They are close to the airport but about 45 minutes from MD Anderson. I hope they know what they are getting their self into! Deb and I went to school together but Pat and Bruce have never met. It will be a nice visit and maybe take my mind off the scan-xiety I am already trying to fight off. I told Jenn I felt like my lymph nodes under my arms felt tender and she replied  "Yip, and I think you might have cancer on your eyeballs, your hair strands, and on your toenails" and blah blah blah (something like this comment).....she knows the routine I go through everytime we go to Houston. I really am not worried....I know God has guided me on this cancer journey for 2 1/2 years and I am still here. It WILL be ok no matter what!!

I was in a 5K Heart Walk a couple weeks ago. I could be in one every weekend...Not only do you give to a lot of good organizations, you also meet a lot of new people from the area.

I received a call from Polly Sulcer and she has asked me to speak and tell my story at the 20th Relay For Life in Richland County in May. Oh boy......OH BOY! What an honor but for 18 years when I worked, I worked with people mostly one on one....now to talk to a group of a couple hundred and then some.....I hope I don't disappoint!

Sometimes I pinch myself because I feel so good. I have got to say no to people so I can stay home and finish my book to sell for our Relay team. I have 4 pages completely drawn and ready to watercolor....only 8 more to go. Argh!  I am taking the drawings to Texas with me so maybe I can get a couple more done. As I was saying, I feel really good. Yes, I have a pain here and there....but I do not take pain pills....never pain that stays...just a whang of pain here and there in the liver area. As always, I ask for prayers to the moon and back for shrinkage or necrosis (dying of the tumor). I have always asked for stability but this time I have decided to ask God to take it a step further.....let's show 'em what we got! Because God can move mountains, separate seas, He can do anything so I am praying for more........in 2 1/2 years...it's been all about stability. And I will give thanks and praise for that but WHAT IF HE could go a step further. To give hope to some other CC families I have talked to lately. Pray.......thoughts....God hears them all!

As I stood on Main Street last week and visited with Janet David, she said Father Jerry kept telling her to get on the computer and read my blog. Not being very computer literate, she has not did it but said he told her several times how uplifting and so full of faith my posts were. That to see how much faith I showed through my cancer journey gave him so much inspiration. WOW! How humbling to hear this as I teared up at the thought of Fr. Jerry saying that. That alone makes my blog worth keeping alive. That maybe someone else will learn about CC or learn/reach out to God. I had a family from Nebraska that I talked with last week. They just found out their 22 year old son has CC. The first question I asked was....Do you believe in God?   The CC journey with God along side of me is like having stepping stones when there are bad moments...they lead me to the next moment...day...week...   BUT, without God, it would just be stumbling stones one after the other. Just when you start to get up, I imagine you would just fall down again and again. But....God picks me up on those somber days and I will have one about Thursday when I go for the results and to see where my cancer stands. I know He is beside me but it is still scary to sit and wait for my name to be called back....to see the faces come and go in that massive place called MD Anderson. I tell myself anyone who is human would have those feelings and it is ok.......and I pray and talk to God in my head the whole time as I sit and wait.  He is there to pick me up when I start thinking about dying. He is there every single time...every single moment...every second of the day on this journey of my life. I praise Him and give thanks!

So, this week...as you stop at each STOP sign....STOP, LOOK BOTH DIRECTIONS, THEN LOOK UP AND ASK GOD TO KEEP ME IN THE PALM OF HIS HANDS AND TO GIVE ME GREAT NEWS!!! At every turn, and every dinner prayer, please include me in your prayers. Prayers are heard and answered as they have been for the last 2 1/2 years.

Thank you and I will also ask God to bless my family and friends each and every day. You ALL mean so much.

I haven't even started packing so I better get off of here and get busy! Suppose to be cold in Texas....what in the world!!!  I thought Texas was warm until atleast November!!!!!   BRRR!

Hugs to you and may peace be with you all!!
Patty



Tuesday, October 1, 2013

Every day....every moment....

Life changes every day...every minute....for all of us.
I have a new granddaughter, Amity Hazel, and she is two weeks old today. What a beauty!
Meeting Amity for the first time

The beautiful new family of three

Jennifer, Amity, Pat, and I

Jennifer and Amity 

Amity Hazel

I have always stated....where there is life, there is death. It is so true but sometimes sobering when it comes to the death word. I pray for all who have lost a loved one...a son... a daughter, a friend, a parent, or the town's best friend, Father Jerry.  Our Heavenly Father knew Father Jerry could not live in this agony for 15 months so he scooped him up and put him in God's kingdom much sooner. WOW.....in the grand scheme of things, do you know how lucky Father Jerry is right now? No struggling of any kind, but peace in God's Hands. Peace. P.E.A.C.E.
Jennifer, Amity, and Father Jerry before Amity and Jen were discharged from the hospital on September 19th, 2013

Pat returned from a hunting trip to Wyoming late Monday night, so I have been here with Kate for the week. I had my Aunt Belinda and Uncle Don Pottorff here from Lee's Summit, Mo for a class reunion. Belinda is my father's youngest sister.

My mom and sister Sarah took me to chemo today and my numbers seem good. I told Dr. Dy that this was my last visit before another trip to Houston and MD Anderson, and by looking at my lab work, what does he think I will hear. He thinks things are stable and the chemo is still working. One side effect right after chemo with Irinotecan is called "the sweats" and they last all day and into the night after I get chemo. I get no sleep...some from steroid and some from going cold to hot to cold to hot....on and on all night long. But it is ok....God is good to me and it gives me all night to talk to Him......about any and everything.

I walked 3 miles yesterday with Kate and it was nice but I was sore by evening.  I did not walk today after chemo as it was about 5 when I got home and the chemo makes my legs a little shaky for a fast paced walk. Tomorrow!!!  I am signed up for the Heart Walk this Saturday with Jill Kessler Weiler and we will persevere!!!  This is not a timed walk/run so just finishing and being a part of something so crucial as the American Heart Association is a good enough reason for me!!

Several people have stated to me that I have not posted for quite awhile. So, I went back over my last two posts before this and it just broke my heart to re-read these posts. Read them yourself and you will especially understand if you are from Richland County.  I have not posted much about myself as other people needed prayers for healing more than me. I am just grateful for every day that I feel so wonderful.

I will finish with a card I bought a few years ago. I read it often not only for myself but anyone with a problem....struggling in any walk of life we might be on at the time.

LIFE'S PATHWAY
At times, life's path seems filled with things
that make the going rough,
And we wish there were a smoother road,
 for we feel we've had enough...
But if we pause a moment
and remember who's in charge,
The hills that loom ahead of us
no longer seem so large,
and every rock before us. when we know we're not alone,
becomes, not just a stumbling block, but one more steppingstone.
You've overcome so many things, and, every time, you've grown
Through sheer determination and the wisdom that you've shown. So, as you face this journey, from the moment that you begin, Know that God will guide you, and you'll have the strength to win.

May God's peace enter your heart right now and calm your soul. May your Faith only deepen with so many tragedies in our community right now. Have faith that God is in control always and that He is with us always.

I will keep you posted as my trip to Houston closes in. I ask for prayers of strength and that a calmness comes over me as I get that scan-xiety a few days before the scan. I thank God for each and every person in my life. New friends, old friends, family, and my doctors from Olney, to Effingham, to Springfield, to Houston, Texas!  May God be with ALL of you!!

Hugs and Prayers,
Patty