Saturday, April 30, 2011

Almost time again......

Well....I had chemo a week and a half ago and it's sneaking up on me again this Wednesday. I still feel like I have been hit by a Mack truck!! Feeling a bit better this Saturday morning and I am trying to find a son in law to go get me some mulch for my landscaping. Amy & Rylan said they would spread it in the main area so I am hunting for Bart (Jenn's Hubby) to maybe get the mulch ;^).
I am going to see if the doc can give me some go go juice...even if it makes me blow up like a fish....I just need juice for my battery.....it is in the RED warning area!!  I asked the girls if Mary Jane would give me energy (never being a dopehead....I didn't have a clue). Well...they were not any help either.  Might have to ask my oldest brother...I KNOW he used to experience MJ in his younger days. OH boy...I can't believe I just went there. It IS illegal...I wouldn't do it anyway poeple!!
Anyway...I am suppose to go with my brother Larry, his wife Sheila, and Pat to Arizona in June and I need to find some juice to be able to even walk. Pat's talking wheel chair to save my strength through the airports. I think a rocket in my pocket would be more efficient. Enough whining. Other than being tired and a small rash but mostly on my chest and legs, I am ok. Not much nausea, no loosey goosey stools from the Tarceva which in cases can be disabling almost. So......you ask what am I whining about a little tiredness for?  I am not used to it, I do not like it, and I want it to go away! I have flowers to tend to, work to do (at work). BUT I also know there are alot more people who have it WAY worse than I do with this monstrosity of a disease so I thank God for every minte that all I am have is tiredness. Maybe it is his way of making me slow down so I can pray more!!
Happy 48 Birthday to my big brother and sister, Lisa & Larry today!!

Monday, April 25, 2011

IF I could just sleep 24 hours straight!!

IF I could just sleep 24 hours straight, I feel like I would be a new person. I do not have any problems sleeping, I am just sooo tired lately!  Not sure if it is the Tarceva pill or the chemo just giving me an extra punch!  I slept over my lunch hour today and maybe feel a bit better. Other than being tired, I am pretty much good. Had a belly ache yesterday but probably from eating too much.
We are still selling lots of T shirts and wristbands if anyone still needs to get theirs!! 
Happy Monday everyone!!

Friday, April 22, 2011

Good Friday....

It IS a Good Friday so far. I feel pretty good....maybe a tad bit tired but all in all, good!  No nausea, vomiting or  bad things that happen to some people.  My rash is much better due to the antibiotic that I am on....I feel blessed to not have as many side effects as alot of people. I think age has alot to do with it. 
I hope everyone has a Blessed Easter!!

Patty

Wednesday, April 20, 2011

Chemo Treatment #2

Well.....even though my appt. with Dr.Dy was at 8:30....didn't get into him until after  9. Then....chemo didn't get started until 10:30. Gonna be a late day.

BUT...get this....the dr says I am doing GREAT and my bloodwork is better then the last time I was here....plus since I have NO pain and taking no pain meds, he said he thinks it is already working its magic in my body. Poison going into my body...doing magic? Maybe Magic Potion sounds better :^) I do not care what it is called....if it is already showing signs of working good things in my body-pump me full of it!

My next chemo date is May 4th....got my little paper showing it, it also showed insurance carriers, my address....etc. THEN....I see Current $5770.  REALLY?  Yes, it should definately be called a Magic Potion at that price. But I think that is for two treatments. Nope....just checked and that is for ONE treatment!  Not to mention the $4000 Tarceva pill I take.  Gonna be able to call me the Million Dollar Woman before long!!

I forgot to ready my daily meditation book t.his am and I feel like I have sinned. It has became such a part of my morning that I look forward to it.  I read it every morning and every night in bed so I will have to read it twice as long in bed tonight.

Enough for now.....

Patty

Monday, April 18, 2011

Monday for Lunch!

Trying to realy build up some good nutrients before chemo Wednesday so maybe I won'y be so tired on day 3 & 4.
Here is what I made for my smoothie:

15 spinach leaves-organic, of course
1/2 carrot juice-organic
4 strawberries
about 30 blueberries
1/2 banana
1 heaping TBSP protein powder
3/4 c. almond soy milk.
PLUS enough ice to make it just a little slushie.

MMMMM!!!!!

Friday, April 15, 2011

Have a great weekend!

Last post before the weekend.... I am feeling pretty good. Rash is a little better and does not itch as bad. STILL looks like I took a scouring pad to parts of my head and face.  I washed my hair last night so I didn't have to use a hot hair dryer on it Friday morning. That helped!  I also ate eggs and toast, then waited two hours before taking my meds and NO bellyache. YEAH!! I will resume the Tarceva probably on Sunday and hopefully my rash will be a little easier to look at. I am not whining about it....it really is ugly though!
I get chemo on Wednesday and for some reason I always get excited to get it....is that crazy? I have no pain and take no pain meds so I consider myself pretty lucky!  My dr. says if my vein get a funny color again (in the other arm this time) we will probably put a port in. I am just a delicate flower with little veins....right! 
I want to give a big shout out to my ERBA friends for all of their support through this. Actually, everyone has been more than great. I REALLY didn't know I had this many friends!  My husband has picked up the slack at home and has started doing laundry, keeping dished done/in dishwasher, etc. and he KNOWS how much I hate a dirty house.
Still getting a few meals from people and it is great because I only cook about 1-2 times a week. THANKS to all who share their meals with us.
Lastly, but most importantly, I want to thank God for coming into my life at just the time HE knew I would need him the most! I was one of those who went to church, prayed when I thought about it....not often, and thought all was good. I had no idea how much I was missing out on.....boy what a fool I was! The calmness I now feel and not being afraid of whatever happens in my life, is irreplaceable! AND the people God has sent to me to help guide me with scripture at this time are also a sign HE is right beside me! You will probably hear me say this time and time again but I never get tired of saying it so I hope you don't get tired of hearing it!!
In closing, I received a text from a friend that went like this...."OK...have a short story.....I was explaining your "story" to someone today. When I told them you'd be the one that beats this disease.....I felt the presence of God on me. I believe you're the one that's gonna beat this Patty!"   Thanks Michelle Kauble for sharing this with me!!
Everyone have a safe weekend and God Bless you all!!

Thursday, April 14, 2011

Happy Thursday

Well....the Dr. Dy wants me to stay on the doxycyclene for a few days and resume with the Tarceva. I will always take the two pills daily for as long as I am on the Tarceva. The Doxyclclene does terrible things to my gutt. Worst thing so far since I have started this cancer journey.  My rash is still very angry and ugly....but if it means the pill might be working...I can look at it forever!
Anyway, he did not reduce the Tarceva which is a good thing.  My oxygen level is at 99% which is good-it was the first time I have had it checked since the C word.
Our T shirts are selling like crazy and I cannot believe the support from everyone!  THANKS to you all who have bought one or sent money for our Relay team.
I feel like God has blessed me with the best two doctors in the US. I have all the faith in them and they are just so positive. I lost 6 pounds from a week ago at the dr and Dr DY was not happy with that. I told him I wasn't trying.....
I will leave you with the scripture on the back of our cancer shirts:

"Trust in the Lord with all your heart, And lean not on your own understanding;
In all your ways acknowledge him, And He shall direct your paths."     (Proverbs 3:5-6)

Wednesday, April 13, 2011

I started getting the dreaded rash from the Tarceva on Monday....by Tuesday, it was starting to look like it was on fire (mainly in my head and down  my temples plus my nose/chin area), so I called Dr Dy. He wants to stop the Tarceva until he sees me on Wednesday afternoon AND to start taking doxycyclene for the rash. I am disappointed that he pulled me off the Tarceva so fast when I had no other of the BAD symptoms. MY thought is he will reduce the dose to 100 mg instead of the 150 mg (which is the strongest strength). I took one dose of the Doxycyclene last night and all went ok but this am when I took it, it made my stomach ache terribly and I had nausea. So.....tomorrow morning, I will take it a little differently and hopefully not feel so bad.  All in all, I feel good. Still a little tired but I did walk about a mile and half yesterday with Amy (my daughter) and my friend Debbie Weiler.
I also fixed supper for all of the girls and Pat....which doesn't happen daily!
PRAYERS & HUGS to ALL!

Monday, April 11, 2011

Monday

Still a tad bit tired today but not bad enough to keep me at home. No other side effects either. I do have a rash on my head but I think it is associated with being outside Saturday working in the landscape and interacting with my meds/chemo. Better get me a good hat and be more careful!
If anyone wants to donate to my Relay For Life team.....I need atleast $100....it is tax deductible too so please thing about it. Cancer will at some point and time, touch someone in your family!!

Have a good Monday everyone!!

God Bless You ALL!!
Patty

Sunday, April 10, 2011

SO FAR...SO GOOD!!

Hello ~
Saturday was a busy day with shopping with Sarah and Sheila, then we cleaned out my moms landscaping for about 3 hours. I was a little tired after all of that! Samantha and Bobbie Jo ordered Joe's Pizza for supper. Feeling great so far!
Sunday, I also feel good. Did the laundry, cleaned up the house, made the bed, opened up all the doors to "get the stink out".  As I was combing my hair after showering, my scalp was a little tender so I looked and I have a rash all over my head. Too early for the Tarceva to bring out a rash (or atleast I think so)so could just be the chemo boiling my brain ;-)  The Tarceva pill should bring out the worst rash you can imagine in about 4-5 weeks and I will have it until  I go off the pill. The good thing is, if you get the rash, the medicine is reaching the targeted spot of cancer and working the way it is suppose to! The drs can give me creams to calm the rash down but I have never looked so forward to looking like a teenage zit head in all my life!! I didn't have acne as a teenager but I pray I have it now. Pat says he thinks  I over did it yesterday and to rest a little more today BUT if I get all my housework done by noon and it is not raining, I am OUT of here for a walk....might go to Red Hill State Park. I pray I will continue to feel good in the days and months ahead as I feel right now!!  HUGS!     Patty

Friday, April 8, 2011

Shirts for Sale

This is the back of the shirts:


This is the front of the shirts: (we are having our team name (Suntone Beach Survivors) listed above this logo.)


$20 each, all sizes. Contact Patty at 618.843.5367 to get yours! All proceeds go to Richland County Walk-n-Roll and Cholangiocarcinoma Foundation.

24 hours after first dose of chemo....

Feeling like a bright beam of sunshine today. No nausea or the other end effects yet. No flu like symptoms....BUT, by Sunday, I figure they will have knocked on my door....I hope to be at work on Monday even if I have to wear my pj's. My blood work is all good so far to keep getting chemo and I pray it will stay that way forever! My doctor said Wednesday that he has had 4 cholangiocarcenoma patients in the last 4 weeks and I am the only one without jaundice and in good health. So that is a good thing!
I had a friend who I have became aquainted with again after probably 10 years of very little contact (she was a bike riding partner). Her name is Cindy Bateman and she has been in constant communication throughout all of experience. This morning, she Facebooked me and said something I thought I should share.....might shock some of you. She states "My prayer is that if I ever must go through anything like you are, that I also have the strength and faith that you are exhibiting. God is using you! He knew how strong you were without Him, and He truly knows how strong you are with Him!"  He knows that you will continue to give Him the glory for your strength, faith, and good reports!!  She always leaves me with a piece of scripture (which is my favorite part from her) and today it was very simple but has HUGE meaning. Psalm 46:10 Be still and know that I am God (the Lord).   That scripture has made my outlook so much better/easier. I do NOT ever worry about dying...if and when it will happen. I worry about my children without either parent on earth to guide them, and my husband who is alway there for me no matter what, but I do not worry about being sick or leaving this earth. It will all be ok when God says it is time to go to a better place.
All that being said, I am NOT dying for atleast 10 years if I have anything to do with it. I feel good....people come up to me and say...you don't look like you're dying.... THANK YOU VERY MUCH!!
On another note, my daughters and I are have a Relay for Life team this year and are selling t-Shirts (not the ones they see at the Relay for Life Event) that are awesome. Anyone wanting to purchase one should call Jennifer 843-5278 or Samantha 843-5012 and order one. We are also taking donations of course for our relay team. Thanks to all who have sent cards, called, e-mailed, brought food, gave food gift cards, bought my lunch, or just volunteered to come over and talk. Each and every one of you are very valuable to me!! Probably won't blog tomorrow but will on Sunday if I can get to the computer upstairs.....I will!!  HUGS!!  Patty

Wednesday, April 6, 2011

The day before......

Well....I report Thursday (April 7) morning at 8 am for my first round of chemo. I also start my lovely Tarceva pill tomorrow. My dr. visit went very well today in Effingham and I got a tour of the place. Anxious to get this show on the road.  After chemo tomorrow, I should have 2 days of still feeling ok and then flu-like symptoms for about 48 hours. HOPEFULLY, that is all I will have for now. Will start seeing the rash from the Tarceva in about 1-2 weeks. Good thing about getting it is it means the Tarceva is working...if no rash...it is not working and probably won't stay on it after a couple of months. So....pray for the rash!! A few other mild symptoms could happen but are hopefully managable with Immodium AD.  Hope to be back at work on Friday!! Keep me in your prayers!!  God Bless!!
Patty

Tuesday, April 5, 2011

The beginning.....

I will give a brief overview of the past two months to anyone who is not up to speed with my life. Mid February, I went to the e-room with pain in the upper right quadrant of my stomach. After being sent home with pain meds, the ER dr said to contact a gastroenterologist. I did so the next day and after seeing that doctor, he scheduled me for a sonogram of my gall bladder for removal as he thought this was the pain I was experiencing. My mother had her gall bladder taken out at appr. 43 years old so I thought nothing of it.  The morning of surgery, I get a call from the doctor cancelling surgery as they found a mass on my liver. After an MRI and CT at Good Samaritan Hospital, they would not tell me what they thought the mass was....until my husband called and requested that the doctor give his diagnosis. I had a mass (size appr. 9 cm X 10 cm) and he was 85 % sure it was cancer and maybe had come from somewhere else in my body (metastasis). They requested a biopsy and I then realized this was way more than a small problem so I called Mayo Clinic in Rochester MN. After a biopsy in Rochester and meeting several doctors, they said I had intra~hepatic cholangiocarcenoma. It is a rare cancer that usually does does not occur in the U.S. They also said I was not a candidate for surgery to remove the mass. I was also not a liver transplant recipient. They had an oncologist talk to me about pallative care. WHOA.....that to me...meant end of life care.  Ever see the cartoon where the horse has a rope around his neck and someone is dragging him somewhere he doesn't want to go??? THAT is how I felt. My husband and two of my daughters just sat there...we didn't cry..we just sat there....said ok....and we left.
After much thought...not really...about 5 seconds and I knew I wanted someone who had a better plan of action. So Houston, here we come. Jenn (oldest daughter) called MD Anderson and they said to fax all info possible and they would take a look at my case. Within 3 hours, they called back and said when can you be here.  4 days later we were in Houston and meeting Dr. Javle. It was like he opened a window and let the sun shine in....He said with chemo and a small little pill I would take everyday , there was a 60 % chance for shrinkage to the place where it may possibly be removed. He stated if that didn't work, we would try proton therapy or radioembolization (where they implant little glass beads that are radioactive) to help shrink the tumor. He said with my age, good health, and no jaundice yet, that I had a better than normal chance of shrinking this monster in my liver. So...tomorrow, I go to an oncologist in Effingham (Dr.DY) to set up patient status and then soon after, I will start chemo and my little pill that is $133.33 a day.
You know....I raised my girls to be of the Catholic faith, go to the Catholic School, but was never one who prayed daily...only when I had time....if that even makes sense.  When I was at Mayo Clinic, Pat had went to Barnes & Noble and I stayed at the hotel to rest. I had just got off the phone with one of my daughters and was starting to drift off to sleep when God touched my hand. It was enough to make me open my eyes and become alert. I did not move, I was calm, and He said to me,  "Do not be afraid, for I am right here beside you". It was like I had a new energy. I jumped up all excited and had to tell everyone...so I got on Facebook and told everyone I could. I called people to tell them. I was overjoyed he touched me, he talked to me, and I have never been afraid since of what may be ahead for me. God is Great!