Wednesday, July 2, 2014

This is mainly for my CC friends.....

Somewhere....someone asked about Trametinib and I said I would ask my doctor about it. He said it is VERY promising. VERY.

Then I asked about Immunotherapy and he said "IT IS HUGE!  HUGE!"   and that it's going to do great things.

That's all I've got! Hope.......Pray......that a cure is on the horizon for all cancers!


Hugs~
Patty

Tuesday, July 1, 2014

Life on Suntone Beach..............

This morning started out at my daughter Amy's, for coffee with her, my mom, Debbie Weiler, my daughter, Jenn....and three of the cutest grandbabies ever!  We have kind of started a Tuesday morning coffee group....or atleast until school starts and Amy has to go back to a real job....teaching!
This is our time to share what's going on in our lives, etc. After almost everyone was gone, I received a message from a girl from another state. Her mother also has IHCC. I am not going into details but I ask that everyone stop right NOW and say a prayer for Betty. That she fights and wins this CC battle. To Betty's family...I will continue to pray and please know you can contact me at any time.

I just checked the stats on my blog....I am at 101,855 hits. They come from several countries. People are looking at my blog from all over the U.S., Russia, Canada, U.K., Sweden, Germany, Norway, Saudi Arabia, Ukraine, and Estonia.   A couple of those places I couldn't even tell you where they are on a world globe!  ;-P

When I was diagnosed 3 years and 5 months ago, I prayed to God that he gave me time....time to see my girls all happily married, time to praise HIM for being so intertwined in my life after being diagnosed. I prayed to HIM that if He gave me more time with my daughters, I would praise His name every chance I got. I would "Pay It Forward" every chance I got. I would help any cancer patient who needed help...get help.             Life is....all about time.  

Well, speaking of time, my last daughter gets married August 23rd and I couldn't be happier with the man she has chosen to marry.  So, with less than 8 weeks to go, invitations are in the mail and our list of To Do's is getting smaller and smaller.  It's the 4th wedding after all...a piece of cake!  Heck, after this wedding, I wont even be able to afford a crumb off the cake!  ;-)

I visited my local oncologist, Dr. Dy (Dee) who was super excited with my reports from Houston. He said he is also amazed with my stability. He told me I was lucky and I corrected him and said "NO, I'M BLESSED"!  I believe God truly is working thru me to give people hope, to let them know there is life with CC......there are a lot of factors whether you have a giant struggle or maybe you don't. Some say I have had a big struggle....but I don't remember it being that much of a struggle. I may not be eligible for a transplant but I am ok with that. I may not be eligible for a resection....but I am ok with THAT, too!  I am A-OK with cooking that nasty big tumor in there so if it wakes up....we will cook it OR maybe do immunotherapy if it's approved. Wouldn't that be exciting.  I might not get to be the poster child for Immunotherapy but maybe I could be right beside Amity on a billboard!  I'm ok with that! For you who do not live close, you do not know that my granddaughter is on billboards in a few surrounding counties plus the county I live in for Richland Memorial Hospital.  It makes me smile every time I go by one.....I just want to wave at her like she can see me.....AND, if I am the only person in the car, I do wave and smile at her!!  Now the secrets out!

The RMH food program for chemo patients is still going great. Lots of greatful people who are hooked up to needles/tubes/I.V. poles and just enjoy some of Richland counties good food.

So, for now, life is good on Suntone Beach. I will be working a lot at the fair starting this weekend....and enjoying all the day lilies blooming, hosta's big as flying saucers, a momma raccoon in a tree hole with three babies...  L.I.F.E.   It is all around us.  I have learned the hard way to enjoy it and take it all in. Respect it and give thanks!!  These are my thoughts for today.....I am calm, I am blessed, I am thankful! I am a survivor!! Many hugs to my CC friends....and to the Cholangiocarcinoma.org website. The best place ....well...besides my Dr at MD Anderson, to get real and correct info on this terrible disease. I believe Wikipedia should be burned with the devil...because it can sure scare the H out of a person with cancer! Stay away from it......bad bad stuff!

That's it! Good night!!

Patty~~

Friday, June 20, 2014

Blessed~~~~~~

Greetings friends;

Last Sunday morning we set out for Houston, Texas as most of you already know. It had only been two months since my last visit but since I receive no treatment of any kind.....I wasn't complaining too much!  I got my blood work done on Sunday evening as soon as we got to Houston at The Rotary House (where they have a lab from like...3 to 8 pm.)....this saved me from being at MD Anderson at 6:45 Monday morning for blood work. Then I just had to be there at 8 a.m. the next morning. Kind of spoils a person....and it also meant after my scan, I could go to medical records and get a copy of my blood work. Kind of like cheating a little because it gives you a peek at your blood work and what you hope your scans will be the next day when you see the Dr. So....when I saw My CA 19-9 dropped to 9.2......I felt a sigh of relief!!  The rest of my blood work was good...even better than two months ago!
Dr. Javle stated I was just doing amazing and that I was doing great. He stated someone sent my Relay For Life speech to him and he got to see my speech!  He was impressed but who has his e-mail?? Not I!  I approached Dr. Javle about Immunotherapy and if he thought it would be approved for CC. AND, if it was, could I be one of the first lab rats (he laughed when I said that) when it was approved. He said I was stable and my cancer is not active. You would have to have an active tumor to be eligible. He stated he knew it didn't really make sense .....you would think it would be like the Measles shot....you get it before you get the measles.....but with Immunotherapy, you have to have an active tumor to get the therapy.....WHEN it gets approved. He states it has already been approved for melanomas and I think lung cancer. He thinks it will hopefully be no more than a year before it is approved and able to be used for CC. Dr. Javle totally agrees he thinks Immunotherapy WILL work for cholangiocarcinoma tumors. This is some of the most positive news I have heard in a long time. And to think the cure to cancer just might be right inside your own body!! Who'da thought!!

The "Feeding for Healing" Food Program that I played a key role in getting started (along with Eric Tolliver and Jennifer Emmons from RMH) at Richland Memorial Hospital that helps make it a little more easier for our chemo patients is going really good as far as I know. I wanted to be the first to take food (along with my mom's chocolate chip cookies). Roll With It Bakery was there for the next week of chemo. Right now, I am filling up August. I always went to Effingham for my chemo but it doesn't mean I can't do something right here in my own hometown!!  Some days...after you get home, you start losing your appetite for a few days so some mostly healthy food the day of chemo really means a lot!! Any one who wants to donate food, even if it's just muffins, cookies, fresh fruit....we can add it to a day that is little short on food...... You can even be a prayer group, 4-H group, a group of close friends, or maybe you had a family member who had cancer and want to give back. Donations go to buy food for a day and we post whoever donates money/food that day on the wall in the chemo room for everyone to give thanks to that person/group/business.  It may not seem like much....but it is a lot to a chemo patient!!  Feel free to call me at 618-843-5367 if you would like to Pay It Forward!!

Pat has some hunting trips planned throughout this summer/fall, I have planned a girls beach vacation with friends, we have Samantha (my daughter) and her fiancĂ© getting married in August. A family beach trip in late July....just three weeks before the wedding. And then there's the wedding planning!!!!!  I am not using my kayak as much as I would like but it IS getting used some and the kids got us a spiffy NICE lifejacket for Pats' Father's Day present. 

In closing, I  just ask that you breathe in this summer air, you enjoy the splashing of a grandchild in a pool, sip your coffee ever so slowly as you enjoy a morning cup with a friend. Life is so precious, so unpredictable, so underappreciated. Slow down and enjoy the special people in your life....and for the ones you might not know.....smile...!  Pay It Forward!! God is good...ALL the time!   


All the time.....God is good!!!!  


Hugs!
Patty





Tuesday, June 17, 2014

Good News Abounds

Hello everyone:

Mom & Pat are driving home from Houston now, but she asked that I post a few words to let everyone know the results of her PET scan yesterday and appointment with Dr. Javle today.

Her cancer remains stable! No metastasis to any other organs. Her CA19-9 value went down from 12 at her last appointment to 9.2 on Sunday evening. Her liver and kidney function is great, and Dr. Javle thinks the healthy tissue in her liver that was collateral damage from radiation is regenerating.

Dr. Javle told Mom that she is doing amazing, and he expects her current break to last awhile (maybe months longer!).  Thus far, Mom has been without treatment (chemo or radiation) for over seven months!

Someone emailed Dr. Javle the speech that Mom wrote for the Richland County Relay for Life, and he said he loved it! :)

Thank you for your continued prayers. God is good all the time!!

Jennifer.

Jennifer, Samantha, Amy, and Mom at Samantha's bridal shower

Tuesday, June 3, 2014

A Short Trip But One That Meant SO Much!!

My daughter, Samantha had a short business trip (last month-forgive me for not posting sooner) to Ohio so I asked if Debbie Weiler and I could tag along as I knew it was close to where two people I consider friends since starting the cholangiocarcinoma journey lived!!  Pam Kunklier and Lisa Salem-Craine whom I have talked to and visited through Facebook or the Cholangiocarcinoma website.....but meeting them in person was just so much more as far as connecting and just having fun!!
After Samantha finished her business, we freshened up at the hotel and went for supper at David & Lisa Salem-Craine's house. What a wonderful evening and a super delicious Italian supper.....lots of CC talk and telling our stories.  I felt like a bad guest as we stayed until 10:30 Ohio time but my clock was showing 9:30 (which is Illinois time). Sorry guys!! 
I was super pumped all day.....SOOO excited to meet Lisa and her family. Lisa,  David,  and their son were all simply delightful.....AND we all shared a bottle of Berryville White Squirrel wine ....so we took a little bit of Richland County to them.


The next morning we met Pam Kunklier and Lisa Salem Craine at Panera Bread for coffee and a bite to eat. I have known Pam for appr. 3 years but never met her......it was sheer pleasure to give her a giant hug today....such a beautiful lady with a lot of poise. Thank you both for starting our morning off on a great start!!!


Back to Illinois we drove and made it home around 7 p.m. I just wanted to share that the only good thing about having this cancer is meeting some of the most giving and wonderful people ever......I have already told Samantha I want to go next time she goes to Ohio......I think we could get into some shopping addiction problems (in Ohio with Lisa) if we were together for more than a few hours. :-)
As I walked up the walkway of my house from getting home....everything seemed so much greener, all the flowers just smiling at me......As Dorothy from Kansas says..."There's No Place Like Home"
So...thanks Samantha for dragging two old ladies along....and taking us to meet my CC friends.....


Sam~"to the moon and back"!!    :-)




I also wanted to share my Mother's Day present. I have been a huge fan of the band Chicago..... my husband and I spent the night in Evansville and saw them in concert....IN THE 1st ROW!!  Oh yeah!!!!   Thank you~ Thank you ~Thank you to all five of my daughters!!  We even went backstage at intermission and met privately with the whole band.   J.U.S.T. U.S.!!!    They gave us free shirts, hats, signed a jersey Pat bought for me, and also some posters of the band that they all personally signed. The extra special poster was the advertisement poster for that night and they also signed it. It was absolutely wonderful and a night I will remember til the end of time!




My blog is now over 100,000 hits. It is at 100,397......that is crazy!  I had a visit with my doctor in Effingham (Dr.Dy) and he did blood work and checked my blood thickness/thinness. He says platelets are good, white count is good....everything is looking fine. Kidney and liver functions are good. I feel like something is ajar....but I also know my kids say I do this every time it starts to get close to the time to go to MD Anderson. That's not until July 14 & 15.....and Dr. Dy says my lungs sound fine so I must pray for more faith and to trust in the Lord and hand it all over to Him. He is leading me on this journey....so what am I worrying about?  I think it is natural and I just tell myself that the more I worry, the less I live.   I have been slacking a bit on exercising...and I am not proud of it. I plan to join the pool program for adults only before the pool opens everyday for the kiddos to enjoy.  Even if I walk laps instead of swimming every lap....  I truly believe keeping active has helped me in the cancer battle. So I best get a marching (or swimming)....right?






I have started (with the permission of Richland Memorial Hospital) a snack/lunch program for chemo patients on Wednesdays. That is the long day for chemo patients at RMH. It does not benefit me as I go to Crossroads Cancer Center...and I am not getting any treatments right now. But I want there to be food brought in for the cancer patients and their caregiver/spouse to enjoy.  It does get expensive and if I can help Pay It Forward to some cancer patients...I feel God is calling me to help implement this program. I have had some businesses sign up to provide food and by word of mouth, I believe it will blossom into a great program. TOMORROW is the first day they will get food delivered to RMH. I am providing food tomorrow.  I am taking doughnuts and fruit for the am snack. For lunch, I am taking ham and turkey subs with Colby jack cheese on them. I am also taking my momma's homemade chocolate chip cookies and some gingersnap cookies, plus a variety of small bags of chips. The hospital provides tea, coffee, and water throughout the day.   The girls from Citizen's Bank has signed up to do like 3 times in a year, Susie Trupiano and Joe's Pizza has signed up, Lauren McClain with State Farm Insurance, Sandy Hahn with Hahn's Carpet, Zuber Law, Roll With It Bakery.....and my mom is going to pitch this program to her church ladies to see if they would like to provide food. Please feel free to PM me if you or your church bible study group or if you are a business or even a group of friends who want to do this. I need to hit up Mayor Ray Vaughn......I know he has a big heart and it would be so great to have him involved and backing this worthwhile project!!  Believe me, something like this is huge for a cancer patient who may not have an appetite by supper. This is something I CAN do for my community and all donations/people who help provide food are helping people in our area...people you might even know. There are only 52 weeks in a year....and there are already 3 weeks there will not be chemo, so if a group did it 3-4 times a year, it wouldn't take long to fill up my calendar. AND....you never know when it might be YOU who is grabbing a banana or roll with a cup of coffee while you or a loved one is getting chemo. Think it will never happen to you?  Neither did I when I had just turned 46!! 




So, as I close this blog, I apologize that it has been so long since I last posted. I am doing well and living life like a champ. Babysitting a lot, getting pulled over for speeding.....just got a warning (must be my good looks and charm.....choke- spudder- puke!  And it was only 18 miles over the speed limit! :-)  There's been wedding showers, baby showers, shopping for wedding supplies....ahhhh!




To my CC friends, know that I pray for you all each night and for all cancer patients everywhere. I pray for a cure soon...or more time for some who have less time than I do to live. Dr. Dy said he diagnosed 3 last week with CC IN EFFINGHAM!  That is a lot in one week since it is so rare.  What spaceship is this "crap" coming from.  (Excuse my language mom).






May peace be with each and every one of you who reads this blog. 


Patty~~















Tuesday, May 6, 2014

Its Been Awhile................

Greetings my friends;
It's been awhile since I posted  and ALOT has happened. Most importantly, I am the proudest Ja~Ja of the most beautiful grandson ever. My daughter Amy and her husband Rylan are proud parents.....he weighed in over 8 pounds and 20 inches long. He is a fine young baby!!


Secondly, I sold all 400 of my book, "Irene and the Crooked Little House".   Our Relay For Life was May 3rd and our team raised the most money......that's a pretty impressive goal in my mind. I was also the Inspirational Speaker....and although I stuttered a few times...it was mostly a pretty good speech ending with a standing ovation!  Lots of laughs and clapping along my way thru the speech. It felt good to be up there....It was dead silence and I really felt like people were listening to my every word. I guess you can be the judge and listen to it yourself. Enjoy. 


http://www.youtube.com/attribution_link?a=IaLz9sKDP4k&u=%2Fwatch%3Fv%3DDBH4WwxcqwA%26feature%3Dshare




 We also did a dance performance with three of my daughters in the performance...one singing the song. We might not make it onto America's Got Talent...but who said we wanted to? It was just good fun...isn't THAT all that matters!!


http://www.youtube.com/attribution_link?a=QmNixIevSZs&u=%2Fwatch%3Fv%3DpCib686LDF4%26feature%3Dshare








I seem to be puttering along. I feel like I am going 150 mph....and then after about 5-6 days of it, I need a nap. Since I am not on chemo, radiation, no meds besides blood thinner shots twice a day....there is not a lot to write about. I am enjoying time with my grandchildren and family.  I am thankful to be here to celebrate Mother's Day with my own mother this year!!  And also able to celebrate it with my own children.


I am blessed to be stable and enjoying the fresh air....the flowers blooming...the trees shooting out with leaves...riding my bike...and taking walks with my daughters and grandchildren. Life is good...and I am SO SO blessed!!


Happy Mother's Day to all mothers out there......another reason to give thanks to God!!


Feeling Blessed!!


Patty



Wednesday, April 16, 2014

My Time Has Not Yet Come!!

It was Sunday about 2 as Pat and I were driving to Houston....and a calmness came over me that said...."It's going to be ok....IT'S.GOING.TO.BE.JUST.FINE.   I sat there a few minutes before I said Pat....(long pause) and he said" What honey" and I replied Everything's going to be ok.....he of course agreed and I said NO.... "EVERYTHING is going to be ok with my scans!!"  It took an even deeper calmness in my soul....Thank YOU, God!!
Monday comes.....I wait less then 5 minutes after blood work at 6:45 in the am, which is REALLY quick. The scan went fast and I thought....Hmmmm, they didn't find anything or they would have scanned longer (maybe...maybe not.....was it my imagination)?
Monday evening comes and we go to Holy Ghost Catholic Church to hear Father Byron Miller give a presentation/talk. Very good and so glad we went. Jesus said appr. 13 times in John's Gospel that "My Time has Not Yet Come"....and it resonated through my body as if God was saying that to me also.
Tuesday comes, THE DAY to get scan and blood results. I get all the temp, weight stuff out of the way and went right back to see the P.A. and then Dr. Javle. QUICKEST I have got back to the patient room....E.V.E.R.  God knows I am not patient even though I have learned over the last 3 years and 3 months...it's all on God's time...not Patty's "Hurry up and do it RIGHT NOW time!! :-)
The P.A. comes in and goes through every word of the report.....explains in deep detail what everything means and also compares it to the last scan I had. She said I am as stable as we can even think. The mass in the liver is stable....no lymph node involvement ANYWHERE except some inflamed due to my chronic sinusitis. EVERYTHING IN MY BODY WAS CALM............THANK YOU JESUS!! THANK YOU FATHER!!
Dr. Javle then came in to reiterate what the P.A. said, then said he was so happy with my progress....my stability....    He said Dr. Das, the radiation oncologist in Houston who mapped exactly where I was being radiated, was just talking to Dr. Javle about 2 patients with CC. One person who is not doing so well....and then....wellllllllllllll, there's ME.  Stable as any stable could be expected! I wanted to shout and cry at the same time with joy.
Pat and I headed to the movie cinema right after the visit to catch a movie. I saw God's Not Dead and Pat saw a comedy. Great super wonderful movie!! My movie of course got out first so I started walking outside in the crisp air to release some of the good energy that wanted me to just scream outloud that My God is So GREAT!!!!!....I wanted to jump up and down and shout THANK YOU GOD! and then what happens....ROAR by Katy Perry comes on. I am still walking, and I just smile. I felt like it was a God Wink and I so took it all in. I called my friend, Debbie Weiler so she could hear the song playing and revel in the moment with me.
I cannot explain the feeling I have inside of me.....Thanks to God, Thanks for leading me to Texas, Thanks for giving me more time on this earth, just Thank You Jesus......MY time has not yet come!!!
It is 4:41 am on Wednesday morning and we are headed on the road very soon with M. Burgener and will be home close after nightfall.
In the movie I saw,,,two men said several times "God is Good....ALL The Time. And the other man comes back and says "All the Time, God Is Good!!   How true....how so very true!


This is a short post but full of hope, praises to our God, and Thanks to our God for my life. L.I.F.E!  It doesn't any better than this girls life....right here and NOW!


I can't post this without thanking the two Bed & Breakfast Inn's we stay at while in Houston. Thank you to David and Roselyn and Bruce and Deb.......for good food, good conversation, and the good price that we paid for the room!!  ;-)  We love and appreciate you all!!


I will write a little longer after getting home as Pat is chomping at the bit to get started.  Thank you all for the continued prayers and I hope to see most of you at The Relay where I will tell my story.


Love and hugs,
Patty