Monday, April 29, 2013

Time is a ticking..... is all about time.
Tomorrow is my brother Larry and sister Lisa (twins) 50th Birthday. HUGS to both of you and I had lunch with them along with my mom, sister Sarah, and Larry's wife ~Sheila after my chemo treatment today. Then a little shopping to finish off the day!

Three weeks (May 18), will be my daughter Leslie's wedding to Rhett Funk.

Life is all about many ways. Time you spend with your family, friends,  time you work at doing your best at your job, and most importantly, time spent with God.

I want to share a precious moment I will cherish that happened Saturday as Pat and I spent the day watching Leslie's kids in Lawrenceville. It was about 8:00 p.m. and McKenna had her bath, and was wanting to watch a movie with me on her bed. As I sat on the edge and she jumped all over the bed, she came up behind me ever so gently, wrapped her arms around my neck and said in the most innocent voice "I love you, JaJa!" About 3 tears ran down my cheek. She asked: "Do I need to take you to the Dr?" and I said no, it's ok. She again insisted SHE could take me to the dr, I told her I was just so happy she loved me!......  Out of the mouth of babes, right?

Back to my chemo today. My bloodwork is all good and alk. phosphatase was at 176....down from MD Anderson bloodwork. I am scheduled for chemo the Monday before Leslie's wedding. It will be ok.

I have approximately two months before retirement (I am not old enough to I guess I am resigning....or does it really matter?) I will still have a hard time turning over my keys....shutting the back door for the last time, for the 110 appreciative people who walk through the door and not looking forward to the one hundred eleventh person who is rude and you just wanna poop on their head!!!  You don't get rich money wise working for a CAA (Community Action Agency) but you do get wise and appreciate the job. People who work at ERBA....usually stay there for years and years because we are treated as a great big family. When one aches, we all pull together. MY employer/family has been so good to me and believe me, alot will say I am not the easist bird to work with....feathers do fly at times.  But you know where you stand with me.  I am sure a few will not miss that trait in me. Enough said. There have been less than about 8 times in almost 18 years that I didn't want to go to work....otherwise, I was ready every day due to the enjoyment of helping people get a hand up...not a hand out.

I have a prayer request for a shining beam of light...her name is ASA and she is 1 1/2 years old with a tumor on her adrenal gland. It is cancerous more than likely and will have surgery in two weeks. Pray HARD she will overcome this bump in her life at such a young age. Her surgery will be in St. Louis.  The mother and father are friends with Leslie and Rhett. Bless her little body, Lord.

I feel good, I feel like I am living a high quality of life that I am oh, so thankful to our God. He is good All the time and my Faith overflows that he is right beside me at all times.

 Blessings and HUGS to you all!!


Sunday, April 14, 2013

What lies ahead for me?

As Amy reported on the last blog post, my report from Houston couldn't have been any better UNLESS they would have said it was shrinking or dying.......BUT it is still stable, not growing, and my CA 19-9 dropped from 56.11 to 26.56 (in just three months time). That means it is within normal range of a person without crazy is that?  I asked the Physician Assistant what happened if I came back in 3 months and it was zero? Would it be dead? Would it THEN start to shrink? She said I would still have the mass inside my liver but it would be non-active.The cancer would put less antigens in my blood....but the mass would still be cancerous. BUT STILL CANCEROUS. The PA thought Dr. Javle might change his plan of action at that point. But right now since this Irinotican is working so good, they will keep me on it.
My spleen is slightly enlarged and has been for some time. My platelets have been dropping after chemo. The spleen sequesters some of the platelets and that keeps the platelet count from coming back as quickly. If it keeps being a problem, they could embolize the spleen (if the platelets stayed below 50,000 for a long period of time). Not a big deal and you can live without a spleen. My kidney function is normal, and the liver is showing a very slight damage to the liver....probably from all the chemo. He is not concerned with it but says to stay away from Tylenol as much as possible, stay away from fried foods, exercise atleast 1/2 mile a day to build lean body mass, stay away from alcohol (which I do anyway). White count is 6.7 which is within normal limits of a healthy person. My alkaline phosphatase is high at 203...not so good since the normal range is 38 to 126.

So, I believe the next visit to Md Anderson will be when they will want me and encourage me to go to St. Louis to start on a clinical trial. Dr. Javle talked very highly of the trials for my two mutations. I kinda feel like I'd be a lab rat but if it is what I have to do to stay healthy and at a high function as far as living, I will do it.

July1, I have decided to retire from my job of almost 18 years at Embarras River Basin Agency, Inc. I just want to enjoy life before I would/if I would start to go downhill. I don't believe in BUCKET LISTS....they seem like "end of life...hurry up and do it" kind of lists. I just believe in quality time with family, friends, and to be able to take a week off to go wherever Pat and I want to go. Heck, we might get brave and take mom to Niagara Falls this fall....don't pack your bag yet mom. My sister Sarah is off on Fridays and we can go rummage in antique stores or go flower hunting if we please. Or if "The Beach Girls" want to go to a fire in the country to see if the firemen need any help, we can...and already did that! :-)    If we wanna go 110 on a country road...we can. I want to donate some time back to the community, maybe be a Big Sister....volunteer at a food bank, plant flowers for the city.....I just want to enjoy what time I have left...or if God has a longer plan here on earth for me....say another 20-30 years.....boy the list I could make. My list is more about living...not about dying. I have faith that God has a plan for me and it's not going to end anytime soon.

People say I inspire them....pooh! People who beat this disease are the inspiration that keeps me hoping for a cure. Lauren Kunklier is inspiration for us CC patients. She has had one surgery and awaiting a second to take "the bad part" of her liver out so she would hopefully be cancer free. The more people who beat our type of cancer, the better odds for funding clinical trials and a cure. And if I have to be a lab rat to help find a cure, so be it.

When I was little, I was taught to STOP...LOOK....LISTEN....and now 40+ years later, I STILL STOP, LOOK, LISTEN AND THANK GOD for all the wonders in this world. I live in a woods and I can just STOP and LOOK out our extra large windows, open the patio doors, and LISTEN in amazement at the spring that has sprung, the birds so happy to have warmer weather, people just seem happier to be able to get out and enjoy the day that God has made for us. So.....get out there and enjoy the day...forget about the little gripes in really don't know when your expiration date is going to be stamped on your own foot!

Hugs and more hugs to you all!!

God Bless~~

Thursday, April 11, 2013

News from Houston

Mom asked that I update everyone on her news from MD Anderson today.

Everything is stable. Her cancer marker dropped 25 points, which means that the cancer is a lot less active. All other organs are in good shape and there is no sign of the cancer spreading elsewhere in her body. Her labs were good and her chest x-ray was clear. GOD IS GOOD!! They are boarding as I type this and heading home.

There have been a LOT of ups and downs over the past two years since mom has been diagnosed with cholangiocarcinoma, but I thank the Lord each day, not for the downs(as they come from the devil), but I thank him for the ups and for being with us through the downs, as they have all made us stronger and closer to each other and God. I love seeing how mom has inspired so many people and been able to meet new friends, all because of something so horrible. She is the true meaning of 'joy'.

Written/Posted By: Amy

This morning is "the waiting time"

I left for St. Louis (Pat and I) on Tuesday night after the election closed and spent the night there before flying to Texas on Wednesday. I arrived at MD Anderson a couple hours early to meet Judy Collins who is also a CC patient. We surprised her while she was there getting chemo in the Mays building (if you've never been to MD Anderson....there are several large high rise buildings that are all intertwined/a part of MD Anderson). We visited for about an hour and a half and had a wonderful time with her, her sister, and her daughter Larissa. When Judy was diagnosed, Larissa was on the computer finding out all she could about the disease and came upon my name and this blog. I believe she was guided to this blog and I hope I can help them/answer questions/share ideas that other people have no idea about.

Then, I had blood work at 12:30 and a break until about 1:50 (which gave Pat time to eat some lunch). Then to the CAT scan area in the Main building (different building). We were there till about 4. I had the biggest honking needle I have ever seen so far put into me for the contrast. I thank the good Lord they gave me someone who hit the vein on the first try. WHEW!! was a thick needle!
So...after getting to our hotel, we had complimentary chips, nacho cheese, chili, beer, raspberry tea...soda's..all free so we ate that and skipped leaving for supper. It was beautiful when we landed in Houston but when we came out after the CAT scan, it was drizzly and miserable with the temp dropping atleast 20 degrees!! I didn't bring a coat....I thought Tx would be warm!!  What the heck!!
It is now Thursday morning (I slept like a baby last night) and we went for the free breakfast and am just...waiting....waiting...waiting for the visit with Dr. Javle. He will discuss the results and if we need to change the plans up a little depending on the status of the tumor and if it has spread. It is just a waiting game. My feet have been swelling in the last 3 days and I am a little (OK....ALOT worried) concerned a bit about that. I know I have walked is warmer...but something tells me it is a little more than that. It is all in God's hands today. I have always said that and I truly believe he has kept me so healthy for a reason.....
I would like everyone who reads this particular blog to pray for a young lady named Lauren Kunklier. She lives in Ohio and just had some liver surgery done. She is having some problems and needs the extra prayers RIGHT NOW! I fully believe she will beat CC but it's going to be a fight for her and prayers from Illinois can NEVER be a bad thing!! 

 I am usually very quiet and don't visit a lot with other patients. Yesterday was different. I talked to several. One from from Florida who's son just got back from Iraq and she gets to see him for the first time this weekend.  ALL walks of life...all types of cancer...everyone with a different story.

I see Dr. Javle at 10:30 so pray for me and ask God to grant me good health for a little longer or to cure my cancer with the right drug, clinical trial, or a miracle from God. There isn't a magical answer with my cancer. NO easy cancer cure....not even close to one...only God can save me from this disease. I thank him atleast 2 X a day for my health and giving me more time....each extra month, each extra day, each extra minute on this earth. I truly believe I couldn't be here today without God there each step of the way.

It's about time to go wait for the shuttle to MD Anderson....I will probably not post until I get back home as you have to pay for internet at the airport and I refuse to do that!! 

(Our plane ride was not fun due to the storms that came your way....I pray for a smooth flight on the way home later today).

HUGS, HUGS, and more HUGS!!