Around noon today, Mom's rash reappeared. It is concentrated on her upper chest and back, though the itchiest part is in her hairline on her neck. Since she hadn't had any of my pie, she knew it was probably not that.
Dr. Dy is out of the office all week, so Mom called Dr. Houston. He said that it looked like a drug reaction, and called Crossroads Cancer Center while we were there. Dr. Floyd (who is not Mom's oncologist, but is rumored to be a really great doctor) talked to Dr. Houston. After hearing what medications Mom is taking and where the rash is, Dr. Floyd is fairly certain she is having an allergic reaction to Tarceva.
You may remember from previous posts, that Tarceva is sort-of the 'golden-child' of cholangiocarcinoma chemotherapy drugs. Initially used to treat some lung cancers, it was found to be extremely effective at treating pancreatic cancer and cholangiocarcinoma more recently. We have said, "As long as she's taking Tarceva, the other chemo meds are just bonuses," as it works really well at inhibiting a cancer cell's ability to multiply.
Dr. Houston sent Mom to the hospital to get a blood test, urinalysis, and chest X-ray, just to be sure the rash isn't the result of an infection. He gave her strict orders to stop taking Tarceva and gave her an antibiotic and steroids to ensure the reaction subsides quickly and hopefully doesn't reappear. Aside from the itching, she feels well (just a little tired).
Dr. Houston mentioned that there is one way around Mom being allergic to Tarceva. It involves a hospital stay, but, over the course of a day or more, Tarceva could be administered to her in tiny doses that gradually increase. Though she would always be allergic to Tarceva, her body could learn to tolerate the drug.
Always the optimist, I continue to hope and pray that it isn't any of the chemo drugs. We were all (especially Mom) beginning to get used to , and really like, this feeling of stability and calmness. I guess that will teach us!! :)
We have so many things to be thankful for this year, especially God's grace and Mom's strength. On behalf of Mom, Pat, and the girls and I, from the bottom of our hearts, I would like to thank you for your prayers during the past ten months. There is truly no better gift you can give to Mom.
Have a wonderful New Year! :)
Jenn.
A journey that no one wants to experience but I hope it keeps family & friends up to date on my battle with intrahepatic cholangiocarcinoma (bile duct cancer). Sometimes it's humorous, sometimes it's serious, but most of all, I hope it shows how much God is with me through this journey.
Tuesday, December 27, 2011
Coasting along......
The results from the MRI/MRA was no new bleeds.......my visit with Dr. Goswami was great and he is changing my blood check to twice a month instead of weekly. Right now it is staying stable......
I have no chemo this week but I still feel tired and went to bed by 7 last night. The tiredness is just something I have to accept as it is a side effect of alot of the meds I take....not just the chemo drugs. I do not have any standing appointments with Dr. Goswami......I just wait on a phone call if my blood goes whacko on me and I need to change my dosage.
At about 3:30 on Monday, I had a piece of cranberry pie than Jenn had made for Christmas and about 2 hours later I was covered from the waist up with hives/red splotches. Pat got two Benedryl for me and within an hour or so, they were gone. The pie is the only thing out of the ordinary that I can think of that would have caused the reaction.
The highlights since my last post:
1. Christmas Mass at 6 p.m. Father Jerry's Homily was SO good I had tears in my eyes at the end.
2. Of course, all the good food!!
3. Watching my grandchildren and appreciating each and every minute I got to enjoy them.
4. Enjoying time with friends and family.
5. Not eating ANY hospital food as I was healthy enough to stay out of the hospital!
6. Having four days off in a row!
7. I received WAY too many gifts from family but it would be rude to decline receiving them, right? ;~)
8. I spent the majority of time just sitting upstairs looking outside at the many birds, squirrels, and chipmunks. I never appreciated them until I got the big C diagnosis.
So as this years comes to a close, I thank God for blessing me with my second grandchild, four of the best daughters who are there when I need them-day or night, a husband who is there to help cook, rub lotion where I can't reach, go to the store all the time and for just being a sounding block for me. I thank God for Father Jerry who has been an inspiration to me with his homilies......sometimes I think he is speaking to JUST ME....and I know he really isn't. I thank God for my mom and sisters who continually check on me or "get me out" to help build my strength.
No matter what happens in 2012, I know I will still have the support of my friends and family. But most importantly, I will keep the faith. I will keep leaning on, trusting, praying to, asking for strength, building on my faith, and just knowing that God has a plan for me.
God Bless and Happy 2012~
Hugs & Prayers;
Patty
I have no chemo this week but I still feel tired and went to bed by 7 last night. The tiredness is just something I have to accept as it is a side effect of alot of the meds I take....not just the chemo drugs. I do not have any standing appointments with Dr. Goswami......I just wait on a phone call if my blood goes whacko on me and I need to change my dosage.
At about 3:30 on Monday, I had a piece of cranberry pie than Jenn had made for Christmas and about 2 hours later I was covered from the waist up with hives/red splotches. Pat got two Benedryl for me and within an hour or so, they were gone. The pie is the only thing out of the ordinary that I can think of that would have caused the reaction.
The highlights since my last post:
1. Christmas Mass at 6 p.m. Father Jerry's Homily was SO good I had tears in my eyes at the end.
2. Of course, all the good food!!
3. Watching my grandchildren and appreciating each and every minute I got to enjoy them.
4. Enjoying time with friends and family.
5. Not eating ANY hospital food as I was healthy enough to stay out of the hospital!
6. Having four days off in a row!
7. I received WAY too many gifts from family but it would be rude to decline receiving them, right? ;~)
8. I spent the majority of time just sitting upstairs looking outside at the many birds, squirrels, and chipmunks. I never appreciated them until I got the big C diagnosis.
So as this years comes to a close, I thank God for blessing me with my second grandchild, four of the best daughters who are there when I need them-day or night, a husband who is there to help cook, rub lotion where I can't reach, go to the store all the time and for just being a sounding block for me. I thank God for Father Jerry who has been an inspiration to me with his homilies......sometimes I think he is speaking to JUST ME....and I know he really isn't. I thank God for my mom and sisters who continually check on me or "get me out" to help build my strength.
No matter what happens in 2012, I know I will still have the support of my friends and family. But most importantly, I will keep the faith. I will keep leaning on, trusting, praying to, asking for strength, building on my faith, and just knowing that God has a plan for me.
God Bless and Happy 2012~
Hugs & Prayers;
Patty
Wednesday, December 21, 2011
2nd round of chemotherapy
Yesterday was a fun filled day at the Dr's office and St. Anthony's Hospital. I had a 10:30 appt for blood work before seeing the Dr at 11......I saw the Dr at 12:40.....then chemo was stat after I told him I had an MRI/MRA at 3:15 and 4:00. My blood work is still good. Some numbers were down a bit which is why I have felt tired but the Dr still thinks they are great. After the MRA/MRI, I asked the tech if I could see the calcifications they found the week before on a ct scan. They are so very small she said they are not anything to worry about at this stage. Alot of people get them. I have been getting the light headaches like I had with the cerebral hemorrhage and I was a little concerned for a new bleed. The tech said you cannot even see where the last bleed was.....she had to call and get the last scan showing the bleed to compare. She really wasn't suppose to tell me all of this but the radiologist will call Dr. Houston with the official results.. So....if I am not getting a brain bleed, the only thing I can figure is it is the Xeloda I am on. That is a side effect but it scares me to death because usually a second hemorrhage is more severe and could lead to death or severe disability.
Last time I had the "brain bleed" I made Pat help me with a shower before I would go to the ER in Olney.......I told him this time to kick my rear to the car if he has to....no shower! I can tell he is watching me with caution for any sign of a bleed by my actions.....just to catch it quick.....he thinks I don't notice....I do!
I go see Dr. Goswami tomorrow in Effingham. Just a checkup and also probably to discuss the Anti XA test that decides how much of a Lovenox shot I give myself morning and night to keep my blood from being too thick OR too thin. IF we would have did this in the beginning, I think we would have saved some hospital stays....he is not a cancer Dr but a cardiologist. So I am not really blaming him only thanking him for thinking we needed to start doing it!
I have sores in my mouth from the Xeloda but I have a swish and swallow mouthwash that tastes terrible and numbs your whole mouth....I am suppose to use it four times a day.....I try but am lucky to get it done 2-3 X day.
I have not wrapped any presents this year.....Samantha took a couple to work to wrap for me.... I have spent less on Christmas this year than EVER before. So....if you didn't get a gift from me, it went to my church as a donation....or to the senior center where I donated some money.
As the Christmas Season is upon us, there are so many things that come to mind to me this year.....but here is a quote I wanted to share.
My soul chooses to glorify the Lord, and my spirit rejoices in God my Savior, for He is always mindful of me and my situation.... The Mighty One has done great things for me....holy in His name. His mercy extends to all those who fear Him, from past generations, to me, and to those to come.
He has performed mighty deeds even for me....He continues to feed my hungry soul with good things. He has helped me, His Servant; He remains merciful to me even as He promised. Therefore today and all through this coming season of holy days, I stand quiet before Him, I STAND STILL; I KNOW THAT HE IS GOD!
I will post after seeing the Dr tomorrow and the official results from the MRI/MRA.
Happy Holidays!
Patty~~
Last time I had the "brain bleed" I made Pat help me with a shower before I would go to the ER in Olney.......I told him this time to kick my rear to the car if he has to....no shower! I can tell he is watching me with caution for any sign of a bleed by my actions.....just to catch it quick.....he thinks I don't notice....I do!
I go see Dr. Goswami tomorrow in Effingham. Just a checkup and also probably to discuss the Anti XA test that decides how much of a Lovenox shot I give myself morning and night to keep my blood from being too thick OR too thin. IF we would have did this in the beginning, I think we would have saved some hospital stays....he is not a cancer Dr but a cardiologist. So I am not really blaming him only thanking him for thinking we needed to start doing it!
I have sores in my mouth from the Xeloda but I have a swish and swallow mouthwash that tastes terrible and numbs your whole mouth....I am suppose to use it four times a day.....I try but am lucky to get it done 2-3 X day.
I have not wrapped any presents this year.....Samantha took a couple to work to wrap for me.... I have spent less on Christmas this year than EVER before. So....if you didn't get a gift from me, it went to my church as a donation....or to the senior center where I donated some money.
As the Christmas Season is upon us, there are so many things that come to mind to me this year.....but here is a quote I wanted to share.
My soul chooses to glorify the Lord, and my spirit rejoices in God my Savior, for He is always mindful of me and my situation.... The Mighty One has done great things for me....holy in His name. His mercy extends to all those who fear Him, from past generations, to me, and to those to come.
He has performed mighty deeds even for me....He continues to feed my hungry soul with good things. He has helped me, His Servant; He remains merciful to me even as He promised. Therefore today and all through this coming season of holy days, I stand quiet before Him, I STAND STILL; I KNOW THAT HE IS GOD!
I will post after seeing the Dr tomorrow and the official results from the MRI/MRA.
Happy Holidays!
Patty~~
Wednesday, December 14, 2011
Chemo days......
Yesterday was chemo day. Labwork was at 10:45 and my appoinment to see the dr was at 11:15. I was finally called at 1 p.m into a patient room. My labwork looks excellent with my platelets climbing from 114,000 last time to like 247,000 yesterday. My white count is good at 7.2......when you see clients daily like we do in our office, it is good to have an "in range" white count. Especially when the two people I work with are sick and had to go to the dr. Not as good of luck getting my IV in yesterday as it took three different spots and two different people to get it into a "good" vein. My mom actually had to leave the room as they just kept "poking" the needle inside my skin.....doesn't bother me for about 30 seconds then I tell them to give it up and go elsewhere.
I was really tired the week I was OFF chemo and couldn't figure out why until I was talking with Dr.Dy and he stated I should be taking the B-6 even when I am off the chemo....it boosts my energy and I was about out of gas to run on.
SO.....I am taking two every morning and two every night like prescribed so hopefully I will atleast feel like I am running at half a tank even during treatment!!!
Pat has been gone since last Saturday to see Kate in Fredericksburg Virginia. He will be home later today (Wednesday). I am glad he took the trip and got to spend time with her and her fiance Phil.
Christmas is at my house this year with the ever popular prime rib ordered from Hartrich's. If you've never got one from there before....I recommend it. They season it and all you do is stick it in the oven. This will be our third year of having it plus Bret Baker is gifting us with a ham so we are in good shape for a feast this Christmas!!
I cannot thank people for the cards, prayers, and thoughts over the past 9 months of this battle. The drs are so amazed I am still not on any pain meds....I know God has a hand in this because most people at this stage ARE on pain meds. God has amazed me at how calm I feel about even having this cancer. I have always thought I was in control of my life....now, I know God is in control and I am SO thankful for Him. This Christmas Season has just meant more to me but in a different way. With God, everything is possible but without Him, I am nothing. Why did it take cancer for me to figure this out?
I will update next week after chemo and a visit with my favorite dr......the cardiologist-Dr. Goswami. He is the one tracking my blood clotting factor and I see him in Effingham on the 22nd.
Happy Holidays!!
Hugs and Prayers,
Patty
I was really tired the week I was OFF chemo and couldn't figure out why until I was talking with Dr.Dy and he stated I should be taking the B-6 even when I am off the chemo....it boosts my energy and I was about out of gas to run on.
SO.....I am taking two every morning and two every night like prescribed so hopefully I will atleast feel like I am running at half a tank even during treatment!!!
Pat has been gone since last Saturday to see Kate in Fredericksburg Virginia. He will be home later today (Wednesday). I am glad he took the trip and got to spend time with her and her fiance Phil.
Christmas is at my house this year with the ever popular prime rib ordered from Hartrich's. If you've never got one from there before....I recommend it. They season it and all you do is stick it in the oven. This will be our third year of having it plus Bret Baker is gifting us with a ham so we are in good shape for a feast this Christmas!!
I cannot thank people for the cards, prayers, and thoughts over the past 9 months of this battle. The drs are so amazed I am still not on any pain meds....I know God has a hand in this because most people at this stage ARE on pain meds. God has amazed me at how calm I feel about even having this cancer. I have always thought I was in control of my life....now, I know God is in control and I am SO thankful for Him. This Christmas Season has just meant more to me but in a different way. With God, everything is possible but without Him, I am nothing. Why did it take cancer for me to figure this out?
I will update next week after chemo and a visit with my favorite dr......the cardiologist-Dr. Goswami. He is the one tracking my blood clotting factor and I see him in Effingham on the 22nd.
Happy Holidays!!
Hugs and Prayers,
Patty
Monday, December 12, 2011
JaJa and Her Granddaughters
Mom has been fairly tired from her chemo the past week or so, but she's doing incredibly well in general. I wanted to post a few photos of Mom with Braeda and McKenna. I think it's evident how much better Mom is feeling when you look at these. :)
McKenna gets jealous when Braeda gets attention.
She will have some adjusting to do when her new little sister or brother is born.
Did Mom tell you that Leslie is expecting?!?!
Written/Posted by Jenn.
Tuesday, December 6, 2011
No bumps right now and it makes me nervous......
I haven't had to rush to the hospital in Springfield for about 3 weeks now and I feel about 80% most of the time. I am working 8-4 daily except the day of chemo. I usually have chemo on Tuesdays but this is the magical Tuesday out of the whole month I get to "rest" from putting all that toxicity in my body. I also stop taking the oral chemo which is 3000 mg a day. Next Tuesday, it will all start again and I will be making my weekly trips to Effingham. Besides being tired, I am usually pretty decent.
A couple of things that have happened this week that I want to share. After a long day at work yesterday (Monday), I came home to a box on the kitchen floor that UPS had dropped off. I ignored it figuring Samantha had ordered something, but then decided to see who it was for. It had my name and I knew I hadn't ordered anything but excitedly opened it. It was a beautiful gift basket with lots of green teas, cookies, 2 mugs, 2 suckers (one for me and one for Chris Foust to see who can eat it the fastest....Sam's boyfriend and I have an issue with this ;-) . It was from an old school mate who made me do many bad things in high school (anyone who knows me knows that is a joke). It was from Carol Eagleson Batzloff. Boy did we ever skip school and have lots of river excursions (sometimes in Moby Dick which was the "special" Eagleson mobile that rarely was driven by Carol).....one day a bunch of us skipped school, went to Red Hill State Park and cooked steaks and drank beer all afternoon....we didn't do it often....just about once a month or so .......... KIDDING! So....on my way to work this am, I had to put a couple of letters in my mailbox to be mailed off and there was a manilla envelope with a US Postal envelope saying I needed to pay $1.09 extra........in the package was a letter from Carol and a button but I can't repeat what the button says about cancer.....I wore it today and got alot of stares....especially at Richland Memorial Hospital in the lab. Don't worry Fr. Jerry-I would never wear it to church. I will probably put it on my fireplace mantle so on the days I am worn out I can look at it and smile. So....thanks Carol for making my day TWO days in a row....one because of the package and then this am for the nice things you said about me in the letter (and the pin). Carol also walked in San Diego for the Susan G Komen 3 day walk this summer. My hat/wig off to you Carol!! Speaking of Fr. Jerry.....he has had some really good points/ thoughts/ scripture at church this Advent season so far and church is my highlight of the week ......plus the big smile he gives me as if to say....you're still fighting....glad you're here!!
Anyway, Sam, Amy, and I made some candy this week....peanut butter balls, dipped pretzel sticks, and fruit loop candy. Next weekend is hard candy weekend and it is always a good time also....pictures will be posted for that day as there usually ends up being a powdered sugar fight by the days end.
I have almost decided against the clinical trial at Barnes Jewish due to being off of chemo for 6 months. When they call me in January, if they want me to drive over and hear their "sales pitch" and see if I bite, I might make the drive....we'll see. I will head back to MD Anderson in about 2 months for my routine PET scan and also talk to Radiology about some radiation options. I think the main goal is to just keep things stable....not growing and hope for more necrosis (dying) of the tumor. I also have to keep my blood at a happy clotting level so I do not get clots or a brain bleed. I recently read my type of tumor grows appr. 3 cm. per year.......which means I have had it for over 3 years but for the last 9 months....it has not grown. That is a good thing. Necrosis is good but it NEEDS to SHRINK if I ever want it taken out! Getting it taken out is more of a dream than a reality and I know that. But all things are possible through Him.
Until next time~
Hugs and Prayers!
Patty~~
A couple of things that have happened this week that I want to share. After a long day at work yesterday (Monday), I came home to a box on the kitchen floor that UPS had dropped off. I ignored it figuring Samantha had ordered something, but then decided to see who it was for. It had my name and I knew I hadn't ordered anything but excitedly opened it. It was a beautiful gift basket with lots of green teas, cookies, 2 mugs, 2 suckers (one for me and one for Chris Foust to see who can eat it the fastest....Sam's boyfriend and I have an issue with this ;-) . It was from an old school mate who made me do many bad things in high school (anyone who knows me knows that is a joke). It was from Carol Eagleson Batzloff. Boy did we ever skip school and have lots of river excursions (sometimes in Moby Dick which was the "special" Eagleson mobile that rarely was driven by Carol).....one day a bunch of us skipped school, went to Red Hill State Park and cooked steaks and drank beer all afternoon....we didn't do it often....just about once a month or so .......... KIDDING! So....on my way to work this am, I had to put a couple of letters in my mailbox to be mailed off and there was a manilla envelope with a US Postal envelope saying I needed to pay $1.09 extra........in the package was a letter from Carol and a button but I can't repeat what the button says about cancer.....I wore it today and got alot of stares....especially at Richland Memorial Hospital in the lab. Don't worry Fr. Jerry-I would never wear it to church. I will probably put it on my fireplace mantle so on the days I am worn out I can look at it and smile. So....thanks Carol for making my day TWO days in a row....one because of the package and then this am for the nice things you said about me in the letter (and the pin). Carol also walked in San Diego for the Susan G Komen 3 day walk this summer. My hat/wig off to you Carol!! Speaking of Fr. Jerry.....he has had some really good points/ thoughts/ scripture at church this Advent season so far and church is my highlight of the week ......plus the big smile he gives me as if to say....you're still fighting....glad you're here!!
Anyway, Sam, Amy, and I made some candy this week....peanut butter balls, dipped pretzel sticks, and fruit loop candy. Next weekend is hard candy weekend and it is always a good time also....pictures will be posted for that day as there usually ends up being a powdered sugar fight by the days end.
I have almost decided against the clinical trial at Barnes Jewish due to being off of chemo for 6 months. When they call me in January, if they want me to drive over and hear their "sales pitch" and see if I bite, I might make the drive....we'll see. I will head back to MD Anderson in about 2 months for my routine PET scan and also talk to Radiology about some radiation options. I think the main goal is to just keep things stable....not growing and hope for more necrosis (dying) of the tumor. I also have to keep my blood at a happy clotting level so I do not get clots or a brain bleed. I recently read my type of tumor grows appr. 3 cm. per year.......which means I have had it for over 3 years but for the last 9 months....it has not grown. That is a good thing. Necrosis is good but it NEEDS to SHRINK if I ever want it taken out! Getting it taken out is more of a dream than a reality and I know that. But all things are possible through Him.
Until next time~
Hugs and Prayers!
Patty~~
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