Well....our trip started off Sunday morning at 5:45 am. The windows were frosted over and as we started defrosting....the wipers made a big heart on my side of the windshield. It's called a God~wink per Mindy Browning. It just made me tell myself....breathe, it will all be ok no matter WHAT the results are!!! We traveled all day until about 6:45 and stopped for the night at Livingston, Tx. Just about an hour and forty minutes from MD Anderson. The next day started with getting into MD Anderson pretty easy and blood work was immediately drawn. Then on to the PET scan. We were done by 1 and went for lunch at Olive Garden (Thanks Amy and Rylan for the gift card that we didn't use during radiation). We arrived at Roselyn and David Morris's house for the evening and had a wonderful supper (as usual) and they turned on the a/c so we could build a fire. Pat and I found this a little funny but it was nice visiting with wine and conversation. OK...OK...on to the drumroll!!!!!!!!!!
Tuesday came and after French Toast, fresh fruit, sausage links and bacon, we were on our way to our visit with the famous Dr. Javle. We had quite a talk with his nurse about postage sized dumps, zip code sized dumps and "your own reality tv show" sized dumps. It was quite a talk and I won't go into details. The nurse assistant was in next and did the little "Are you having any pain....how is your appetite...blah, blah, blah! THEN, Dr. Javle comes in. The gentle giant asked how I was doing....and then told me that the radiation had worked ......it had did the job! The PET results state: The previous noted focal increased FDG-avidity near dome of the liver is RESOLVED! I have some pulmonary nodules that I have had since 2011, and they are noted to be likely benign. There are a few scattered nodular opacities noted in the lungs but they have been stable since prior examination and are not FDG avid. SO, the dr states I am to go home and LIVE. I have felt SO good and had the energy that I had before the cancer. I don't have to have radiation, chemo or ANYTHING! I return to Texas in 3 months for a scan. As we were finishing the visit....Dr. Javle stated that he was going to New Dehli, India next month for a multi disciplinary cancer conference. He had a man from India call him recently and asked if he would see his mother who was diagnosed with Cholangiocarcinoma. Dr. Javle told the man that he just didn't know if it was possible, he didn't have an office to do a dr visit in, but in the end, he agreed to see the woman. Then Dr. Javle asked....."How did you get my name"....the man stated "From Patty's blog!" ......Dr.Javle said "Patty's blog"???? The man then stated...."Patty, your patient from Illinois". It hit him that the man meant me.....so he told me I am now known internationally for my blog.....which is at almost 93,000 hits. It made me feel really good to know I helped someone get Dr. Javle to look at them. Just WOW! How bout that!!!
So, we ended the visit with "Everything is going great"! My CA 19-9 went from 18.6 (3 months ago)to 10.2. The normal limits for this number is from 0.0 to 35.0. I am a freaking 10.2!
This is the lowest my cancer marker has been. When I first started this journey (it will be 3 years this February) my CA 19-9 was over 800......now 10.2. I will never get tired of saying that!
Don't get me wrong.....I still have cancer cells....but they are VERY inactive right now and that explains the break in any treatments whatsoever. Pray and pray again that I remain stable when I return in 3 months.....until then...I plan to live it up.
Pat and I are going to St. Thomas next month to see his son (my stepson) Tom for about 10 days.. Then in March we will go to Hawaii. So fun will be in my plans along with thanking God for my great team of doctors. For all the prayers sent my way on a daily basis. And to top it off, I'm getting hair!!! Yip..it's ugly salt/pepper in color....but ask me if I care! I can actually part it....kind of.
We are having a slumber party tonight (Tuesday) at the Schonert's in Texas and then starting home early Wednesday with Deb's mom, Margaret.
I thank everyone for prayers, inviting us in their home on this trip to Texas, all the cards, calls, texts, and for just stopping in the middle of your busy day to think of me!!
Hugs!!
Patty
Tuesday, January 14, 2014
Tuesday, January 7, 2014
The Drum Roll Starts............
Happy New Year to ALL of you!
I am sad this week as two CC friends (from Facebook) have died from this horrible disease....May God's peace be with them forever more.
Well....the drum roll begins as one week from today I will be awakening with silence and prayer harder and stronger than most days as this is the day I see Dr. Javle at MD Anderson to get the results of my PET scan/blood work. Although I know it is all in Gods hands, there are the what ifs of:
1. What if this is when I am told there is nothing else they can do for me....
2. What if things have grown....but there are still tools in the toolbox. Not a worst case scenario but not the best either.
3. STABILITY....NO GROWTH....those would be close to the dream words. These are the words I ask God to bless me with every day....several times....along with thanks that I have been so healthy THIS long.
4. NECROTIC.....that is the best thing that they could say and that would mean I would not have to do chemo for another 3 months. Yes, I have been on vacation with no chemo since September 30. I had the radiation with a chemo pill but when the radiation was over, the pill stopped, too.
5. Next month will be my 3 year anniversary since my diagnosis. This is atleast 2 years longer than most unresectable/non transplantable patients live.
Now, I will address the above scenarios in a few simple but powerful words.
IT'S ALL IN GODS HANDS!!
Yes, I am human and to tell you I don't shed a tear about losing my family and this comfortable life that I have, I would be lying. I also just figure every day wasted on pity is a day wasted....period. So I choose to pray instead. You don't think I have made it almost 3....3 years on my own....do you? No, it had everything to do with God.....and all the prayer warriors out there to help God know I am needed here on this earth for just a bit longer. HE is hearing all of you....loud and clear.
I refuse to be on the edge of my seat with worry. It is what it is......and God has a plan. My faith tells me to trust Him no matter what.....when and if I start to turn down the road of death, God is still there. "Do not be afraid, for I am right beside you".....words I will always hear in my ear from that one day at Mayo Clinic.
So.....when I say I am not worrying about dying anytime this month....or the next 8-10 months. We have made some plans to live life in the here and NOW!!! Pat has decided we are taking a trip...to see his son in St.Thomas (U.S. Virgin Islands) in February. Then in March, my mom, both of my sisters, my brother and his wife plus their son who is returning from Turkey (he is in the US Air Force), Pat and I are all going to Hawaii for 10 days. We have rented a house 30 feet from the ocean in Oahu. Once there, my brothers daughter is living over there (she is in the Navy) and she might be getting married if her fiancé can get back from where he is just getting stationed in S. Carolina. We also have another nephew over there with his wife (and he is in the US Air Force also). So.....we have lots of people to visit, show us around the island, just lay back and watch the beauty God has made for us to enjoy. THEN....in August, my immediate family will travel to Destin to the same house we rented last year. So....I guess you could say I plan on being here until August if God has it in his plan. I most importantly have a new grandson due in May, I speak at The Walk & Roll of Richland County in May, and then I have a daughter getting married in August who would like me to walk her down the isle.
How do I feel? Well.....no pain....no jaundice....I was going to the gym and exercising 3 miles on the elliptical just under 39 minutes.....with a resistance of 8. Then we got this ice and snow up to your "shabboggins" and I am not traveling under the road conditions....plus the -30 to -40 (wind chill)degree weather. So I have not been to the gym for about a week. IF anyone has a GOOD elliptical they want to get rid of or sell reasonably....please let me know. I feel pretty darn good to be frank. Not losing much weight.....but trying.....some. But going without chemo for over 3 months scares the dickens out of me....this means the cancer cells from the tumor that were waking up....could travel to other places in my body. This is where I entirely just say...."Well.....God....What are we going to do? Direct my doctor to guide me away from these ugly cells for a long time."
I am back at working on my children's storybook to sell for our Relay team. Two more pages to sketch and then I can start painting. I would love to have it painted and to the printers by the end of the week....but that's a loooong stretch. Goals.....
My goal is to take one day at a time. Give thanks where thanks is needed. Enjoy the days even if I am just sipping a latte and watching the wildlife outside. And that no matter what results I get next week, I know God is in charge of this journey called life. I praise Him and thank Him everyday for my high quality of life.
May you all stay safe in the area...and just stay home unless you are like... out of toilet paper or something important. It is just not worth getting out in these conditions.
Be safe and may God Bless You ALL!!
Hugs~~
Patty
I am sad this week as two CC friends (from Facebook) have died from this horrible disease....May God's peace be with them forever more.
Well....the drum roll begins as one week from today I will be awakening with silence and prayer harder and stronger than most days as this is the day I see Dr. Javle at MD Anderson to get the results of my PET scan/blood work. Although I know it is all in Gods hands, there are the what ifs of:
1. What if this is when I am told there is nothing else they can do for me....
2. What if things have grown....but there are still tools in the toolbox. Not a worst case scenario but not the best either.
3. STABILITY....NO GROWTH....those would be close to the dream words. These are the words I ask God to bless me with every day....several times....along with thanks that I have been so healthy THIS long.
4. NECROTIC.....that is the best thing that they could say and that would mean I would not have to do chemo for another 3 months. Yes, I have been on vacation with no chemo since September 30. I had the radiation with a chemo pill but when the radiation was over, the pill stopped, too.
5. Next month will be my 3 year anniversary since my diagnosis. This is atleast 2 years longer than most unresectable/non transplantable patients live.
Now, I will address the above scenarios in a few simple but powerful words.
IT'S ALL IN GODS HANDS!!
Yes, I am human and to tell you I don't shed a tear about losing my family and this comfortable life that I have, I would be lying. I also just figure every day wasted on pity is a day wasted....period. So I choose to pray instead. You don't think I have made it almost 3....3 years on my own....do you? No, it had everything to do with God.....and all the prayer warriors out there to help God know I am needed here on this earth for just a bit longer. HE is hearing all of you....loud and clear.
I refuse to be on the edge of my seat with worry. It is what it is......and God has a plan. My faith tells me to trust Him no matter what.....when and if I start to turn down the road of death, God is still there. "Do not be afraid, for I am right beside you".....words I will always hear in my ear from that one day at Mayo Clinic.
So.....when I say I am not worrying about dying anytime this month....or the next 8-10 months. We have made some plans to live life in the here and NOW!!! Pat has decided we are taking a trip...to see his son in St.Thomas (U.S. Virgin Islands) in February. Then in March, my mom, both of my sisters, my brother and his wife plus their son who is returning from Turkey (he is in the US Air Force), Pat and I are all going to Hawaii for 10 days. We have rented a house 30 feet from the ocean in Oahu. Once there, my brothers daughter is living over there (she is in the Navy) and she might be getting married if her fiancé can get back from where he is just getting stationed in S. Carolina. We also have another nephew over there with his wife (and he is in the US Air Force also). So.....we have lots of people to visit, show us around the island, just lay back and watch the beauty God has made for us to enjoy. THEN....in August, my immediate family will travel to Destin to the same house we rented last year. So....I guess you could say I plan on being here until August if God has it in his plan. I most importantly have a new grandson due in May, I speak at The Walk & Roll of Richland County in May, and then I have a daughter getting married in August who would like me to walk her down the isle.
How do I feel? Well.....no pain....no jaundice....I was going to the gym and exercising 3 miles on the elliptical just under 39 minutes.....with a resistance of 8. Then we got this ice and snow up to your "shabboggins" and I am not traveling under the road conditions....plus the -30 to -40 (wind chill)degree weather. So I have not been to the gym for about a week. IF anyone has a GOOD elliptical they want to get rid of or sell reasonably....please let me know. I feel pretty darn good to be frank. Not losing much weight.....but trying.....some. But going without chemo for over 3 months scares the dickens out of me....this means the cancer cells from the tumor that were waking up....could travel to other places in my body. This is where I entirely just say...."Well.....God....What are we going to do? Direct my doctor to guide me away from these ugly cells for a long time."
I am back at working on my children's storybook to sell for our Relay team. Two more pages to sketch and then I can start painting. I would love to have it painted and to the printers by the end of the week....but that's a loooong stretch. Goals.....
My goal is to take one day at a time. Give thanks where thanks is needed. Enjoy the days even if I am just sipping a latte and watching the wildlife outside. And that no matter what results I get next week, I know God is in charge of this journey called life. I praise Him and thank Him everyday for my high quality of life.
May you all stay safe in the area...and just stay home unless you are like... out of toilet paper or something important. It is just not worth getting out in these conditions.
Be safe and may God Bless You ALL!!
Hugs~~
Patty
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