Well....first off, I must have been confused when the dr said I would take chemo for 14 days straight (which I thought meant driving to Effingham 14 days straight)....I will actually be on the same routine that I have been on since I started going to Effingham (I will go every other Wednesday and it only takes a few hours AFTER I have bloodwork and see the dr. I WILL take the NEW chemo pill (it is called Xeloda 500 mg per pill and I take 3 in the am and three in the pm) for 14 days, then stop the pill for one week...then start the same routine over the next week. I also still take the Tarceva pill which keeps new cells from dividing and making more cancer cells. Its main purpose is to keep the cancer from spreading. I did not get the new chemo pill as they were having problems with my insurance paying for it through the pharmacy at Crossroads Cancer Center. So they just called my pharmacy in town and they ordered it. It will be here sometime tomorrow. I will also take Vitamin B6 to offset some of the nasty side effects of the new chemo pill. Dr. Dy states he has had patients start taking the pill and have the screaming scoots 40 - 60 times in a 24 hour period.. WOW! Of course any half smart person would know to stop the pill immediately and call the dr. If I would continue to take the pill with the scoots, I would get dehydrated and probably hospitalized so main memo to myself.....call dr if scoots are more than 6 times per day OR if I have to get up at night with scoots. I, of course, will have Immodium AD at my side to take up to ten a day although the box states no more then four a day. It won't kill me, right?? This is more than some of you would probably like to know but most of you who are brave enough to "join" my blog know how I am anyway-to the point and get it out in the open. Deal with it....move on type of attitude. I do encourage people who read it, to join my blog so you can leave comments. I do love input.
On the lighter side, I gained two pounds. YEAH! On two full sheets of bloodwork, there are only three things that are high or low. Amazing that with this type of monster, I have only three things in my body out of whack. Samantha and I walked three miles yesterday morning and Pat and I took my old bike to the bike shop to have a little dr work on it done so maybe I can ride my bike a few days to work before the windy October days start.
I had two friends bring me books this week. A huge thanks to Carolyn Taylor and Karen Zuber. I am reading them both..... I always have the best conversations with Karen.... It is like we "get it" when the other is talking....or tearing up.
I will leave you with a selective prayer that I read very recently and it really says alot if you just sit there a minute and let it soak into your inner being.
God, help me to remember that being alone is not the same as being lonely. Being alone, I'm in good company-I have many guests: You, first of all, then my good friends and the love they have for me, and then there's me. These times alone with just You and I together can be very wonderful, if I take advantage of them. I can get to know You and myself so much better. I can have rich conversations with You. I can learn from You how to live my life in a way that is pleasing to You. And I'd like to live that way, God. So, please sit down and visit awhile.
I just think this speaks so loudly to me....and no matter how busy a person is, their life can be so much richer when they make that time to "stop and visit awhile".
I will keep everyone posted on my side effects..... I leave for Brown County, Indiana with just my daughters to relax from Friday to Sunday. Going to take it easy...shop a little....walk a little...eat alot, talk alot, and just enjoy our time together. There will be lots of pics I am sure so I will post a few.
HUGS and MORE HUGS!!
Patty
Wednesday, August 31, 2011
Tuesday, August 23, 2011
New Chemo regimen.....
Well....Dr. Dy called me Monday morning first thing to tell me he had talked to Dr. Javle at MD Anderson about what to add to my chemo plan since I had the reaction to my Cisplatin (chemo drug).
Starting Wednesday-Aug. 31, I will go for chemo (Gemzar) which I have been getting and is the main drug that fights my type of cancer. This is the best drug of the two I was getting to KEEP getting. I will also get a new pill that I will take 2 X day for 14 days...then not take the pills for a week....then start again and take the pill for two weeks again. I will also go to Effingham starting the 31st for chemo....which will now only take 1 1/2 hours (according to the dr). BUT I will go for two weeks EVERY DAY, then off a week and do it all over again. So...I will take the new chemo pill the exact weeks I get the IV chemo, then I will have a week off of that regimen only to do it all over again a week later. I still take the drug Tarceva every morning (it is to help keep new cancer cells from forming in my body) and I will still take it every day of the month...no skipping a week with that pill.
Side effects of the new chemo drug? The most common is severe diarhea to the point of being hospitalized due to dehydration. We will be on the lookout for that symptom FOR SURE! My good witted husband says that if it interferes with work, there is a commode in the sr. center I could use as my office chair...put a blanket over my lap....turn the music up loud in the office and clients will never know when I am "doing my business". I know....TMI....but with cancer, you have to have a little sense of humor every now and then. Another one is hand and foot syndrome where your hands and feet peel and ache so bad you can hardly walk. I already have (today) three fingers with bandages and Aquaphor caked on the fingers due to cracking on the tips (probably from the Tarceva). So....Pat was going to Walmart to see if he could find some spa gloves for me to wear to bed...after I cake the Aquaphor on my hands. Very sexy...I know....but at this point....gloves to bed is the way for me until we see what this new pill is going to do!! This is what a patient that posted on the cholangiocarcenoma website told me to do NOW before I start the drug to have super moisturized hands before I even start the drug.
I pray that my body will acccept this new drug and it will work to shrink my tumor. I pray for everyone fighting cancer to be brave and stay positive. One friend in particular...who is getting radiation and chemo right now...I pray extra for you as I know you are having some difficult days-HUGS your way! I pray for the McDowell family alot right now who are in Texas and trying to get back closer to home (I believe St. Louis) for treatment for Cathy with breast cancer and John who was in a terrible motorcycle accident about a month ago. I pray ALOT also for the Shryocks who were in a terrible motorcycle accident also. Olney has had their share of terrible accidents and cancer diagnosis lately...that's for sure!
Three of my daughters are coming for supper tonight.....Leslie will be missing as she has started back to college at VU. I thank God Pat and I are fixing our own meals and can now feel up to even cooking for our kids every once in awhile. I have the BEST 6 kids (and two son-in-laws) and husband right now. I have an awesome family including my momma, brother and sister in law...plus my two sisters who are ALWAYS there for me. God has blessed me with so many aunts/uncles and close friends that make my journey SO much easier. BUT it would not be possible without HIM so I thank Him FIRST!!
I have had my cancer according to drs for over 4 years but I feel I have been blessed more in the last 6 months than I could have ever imagined. It was all right there in front of me for the asking....I was just too busy (or stupid) to realize He was right there for me. I am amazed daily at how safe I feel with God beside me with the cancer I have. I am not scared....I am not afraid. I will tackle each day with God by my side......
God sent two Angels my way today while at work...they know who they are....thanks for making time for me in your busy office. Thanks for thinking of me today (and alot of other days) I love you both to pieces!!
That's enough for now....
HUGS!
Patty
Starting Wednesday-Aug. 31, I will go for chemo (Gemzar) which I have been getting and is the main drug that fights my type of cancer. This is the best drug of the two I was getting to KEEP getting. I will also get a new pill that I will take 2 X day for 14 days...then not take the pills for a week....then start again and take the pill for two weeks again. I will also go to Effingham starting the 31st for chemo....which will now only take 1 1/2 hours (according to the dr). BUT I will go for two weeks EVERY DAY, then off a week and do it all over again. So...I will take the new chemo pill the exact weeks I get the IV chemo, then I will have a week off of that regimen only to do it all over again a week later. I still take the drug Tarceva every morning (it is to help keep new cancer cells from forming in my body) and I will still take it every day of the month...no skipping a week with that pill.
Side effects of the new chemo drug? The most common is severe diarhea to the point of being hospitalized due to dehydration. We will be on the lookout for that symptom FOR SURE! My good witted husband says that if it interferes with work, there is a commode in the sr. center I could use as my office chair...put a blanket over my lap....turn the music up loud in the office and clients will never know when I am "doing my business". I know....TMI....but with cancer, you have to have a little sense of humor every now and then. Another one is hand and foot syndrome where your hands and feet peel and ache so bad you can hardly walk. I already have (today) three fingers with bandages and Aquaphor caked on the fingers due to cracking on the tips (probably from the Tarceva). So....Pat was going to Walmart to see if he could find some spa gloves for me to wear to bed...after I cake the Aquaphor on my hands. Very sexy...I know....but at this point....gloves to bed is the way for me until we see what this new pill is going to do!! This is what a patient that posted on the cholangiocarcenoma website told me to do NOW before I start the drug to have super moisturized hands before I even start the drug.
I pray that my body will acccept this new drug and it will work to shrink my tumor. I pray for everyone fighting cancer to be brave and stay positive. One friend in particular...who is getting radiation and chemo right now...I pray extra for you as I know you are having some difficult days-HUGS your way! I pray for the McDowell family alot right now who are in Texas and trying to get back closer to home (I believe St. Louis) for treatment for Cathy with breast cancer and John who was in a terrible motorcycle accident about a month ago. I pray ALOT also for the Shryocks who were in a terrible motorcycle accident also. Olney has had their share of terrible accidents and cancer diagnosis lately...that's for sure!
Three of my daughters are coming for supper tonight.....Leslie will be missing as she has started back to college at VU. I thank God Pat and I are fixing our own meals and can now feel up to even cooking for our kids every once in awhile. I have the BEST 6 kids (and two son-in-laws) and husband right now. I have an awesome family including my momma, brother and sister in law...plus my two sisters who are ALWAYS there for me. God has blessed me with so many aunts/uncles and close friends that make my journey SO much easier. BUT it would not be possible without HIM so I thank Him FIRST!!
I have had my cancer according to drs for over 4 years but I feel I have been blessed more in the last 6 months than I could have ever imagined. It was all right there in front of me for the asking....I was just too busy (or stupid) to realize He was right there for me. I am amazed daily at how safe I feel with God beside me with the cancer I have. I am not scared....I am not afraid. I will tackle each day with God by my side......
God sent two Angels my way today while at work...they know who they are....thanks for making time for me in your busy office. Thanks for thinking of me today (and alot of other days) I love you both to pieces!!
That's enough for now....
HUGS!
Patty
Saturday, August 20, 2011
5K walk on Saturday
Well....even though I was still pretty tired from chemo (Wednesday) and have a really bad burning sensation in my belly (this is common due to the chemo drugs), Amy, Samantha, and I was up early to support the MS Movement. We not only walked but jogged some of the 5K!! Amy and I did the 25 mile bike ride last year so this feels like we "stepped down" in physical exertion but for a drugged up chemo patient and a seven months plus pregnant lady...we didn't do too shabby!! Samantha, of course, did just fine although I think Amy and I are in better shape than her. Amy has had some swelling in her feet so we have slacked on walking but my goal is to get on my bike or walk this week in the mornings if possible. Just wanted to share my Saturday morning experience with you!!
Thursday, August 18, 2011
Another Bump in the Road!!
Well, my bloodwork was almost as perfect as it has been for a long time. That extra week off from chemo helped alot but didn't do my tumor any good so hopefully I won't miss anymore treatments. Everything was going good, had Joes for lunch....so good (From Joe's in Effingham)!! I decidied to take a small nap and Pat got me a blanket. After a little nap, I woke up and the palms of my hands were itchy....after about 5 minutes of that, they started turning red. I just thought it was from itching them so much and blew it off. Then I started to really feel funny...hot...so I flipped the blanket off of me and sat up. Pat asked what was wrong and I said "I dunno" I thought maybe I just needed to use the restroom so I went a skipping that way and was feeling worse each step I took. As I washed my hands and looked up into the mirror my whole neck was the color of a hot red pepper. I walked out of the rest room and went right back to my room and was having trouble breathing. Pat went to get a nurse and told her I was having an allergic reaction. She stopped in her tracks and two nurses came running into my room. One immediately ran to get Dr. Dy and he was there like Johnny on the Spot. He listened to my lungs and they were tightening up so I was given a breathing treatment to open my lungs back up. They also gave me an injection of steroids, benedryl and something for the pain in my belly. Might have been one more thing but I was just too busy breathing in and out this awful tasting fog. Dr. Dy said my reaction was not too extreme...although bad enough...he was just glad they did not have to intubate me (put a tube down my throat or into my neck~in the front). They observed me for awhile and then we were on our way home. I received all of the Gemzar which is the best chemo drug to keep on my treatment plan and the one I had a reaction to was the Cisplatin. I will never be able to have that drug family again as your reaction usually gets worse with each time after you get it. I was to get like 610 CC and I got 306 CC before they discontinued it. So I got some of it in me anyway. He says most people have a reaction to a sister drug called oxyplatin rather than the cysplatin but I would have to be difficult!
Dr. Dy will call Dr. Javle at MD Anderson and consult on a different drug to replace the Cysplatin...none of which will work as good as the one I cannot take anymore. I am ready to move on to radioactive seeds implanted in the tumor or proton therapy radiation where a beam is pointed directly on the tumor and causes hardly (if any) damage to the surrounding organs.
I came to work drugged up on my Tarceva, Benedryl, and vitamins/iron pills. I am to watch closely for another allergic reaction...and if it is going to happen, it will happen in the next two days as that is how long it takes the drug to leave my body.
Through the whole experience, I was not once scared. I did exactly as I was instructed by the nurses, and it all just went kind of smoothly...if there is anything smooth about an allergic reaction. I thank God it was not any worse than it was. I pray that God will direct the drs to a better treatment that my body will not reject. I praise God for being there and guiding me through what could have been a very scary ending. God was there....He was watching....oh yes...HE was definately there. Thank You my Amazing God!!
EXTRA HUG & PRAYERS~~
Patty
Dr. Dy will call Dr. Javle at MD Anderson and consult on a different drug to replace the Cysplatin...none of which will work as good as the one I cannot take anymore. I am ready to move on to radioactive seeds implanted in the tumor or proton therapy radiation where a beam is pointed directly on the tumor and causes hardly (if any) damage to the surrounding organs.
I came to work drugged up on my Tarceva, Benedryl, and vitamins/iron pills. I am to watch closely for another allergic reaction...and if it is going to happen, it will happen in the next two days as that is how long it takes the drug to leave my body.
Through the whole experience, I was not once scared. I did exactly as I was instructed by the nurses, and it all just went kind of smoothly...if there is anything smooth about an allergic reaction. I thank God it was not any worse than it was. I pray that God will direct the drs to a better treatment that my body will not reject. I praise God for being there and guiding me through what could have been a very scary ending. God was there....He was watching....oh yes...HE was definately there. Thank You my Amazing God!!
EXTRA HUG & PRAYERS~~
Patty
Tuesday, August 16, 2011
Chemo tomorrow....
Well....I survived the vacation and it was a much needed week to sit on my tush and do nothing!! I decided to pick one "memory" to share on my blog with all of you.....
After eating supper at our "night out restuarant", we walked to the pier behind the restuarant and listened to the two man band playing 80's music. You could make requests and just enjoy the music, the water, the breeze blowing softly, and it just hit me all at once that we were all laughing/smiling at the same time. I didn't say anything to anyone but my eyes filled with tears of joy at just "living in the moment" and being so grateful to share such a special week with everyone. I thank God daily for each day I am healthy and able to live a mostly normal life!!
I go back to Effingham for chemo tomorrow. I am anxious to see what my bloodwork looks like as I had that extra week to let my blood build back up. It's a bad thing in a way that I had the extra week because my body needs the chemo to fight the cancer....but I must have a little of my daddy in me as I took a gamble and thought it was more important to live in the moment and spend that precious time with my family!!
We start one of our biggest programs back up on Sept. 1 (at work) and I am a little worried if I can handle the stress of it. There have been some major changes/other programs starting with it that are new and they always have "adjustments" for a few weeks .....so I am hopeful to be able to handle it all as I have always stressed over it in years past.....why would this year be any different, right? Well....stress adds to your chances of getting cancer so I REALLY don't need it now. I usually don't even sleep the night before the program starts......it's just a mental thing I need to get over!
It has been 6 months since I found out I had cancer.....some people with my type of cancer don't even make the six month anniversary......just depends on your overall health, age, nutrition, and FAITH! I have faith I will be here in six months. I will take each day one at a time. Every night as I lay in bed, I thank God for the day I just lived through and as healthy as I am. The next morning, I ask him to guide me through that day and each night, it all happens again in my prayers.
I go back to MD Anderson on October 4-6 for PET scan and dr consult to see if it is still showing signs of necrosis (the tumor is slowly dying) or if it is just stable and not getting any bigger....which is a good thing, too.
Sometimes I get so busy praying for all of my friends with ailments (cancer, MS, motorcycle accidents), I forget to ask God to remember me with His healing hands. I know God knows......and if all the people I am praying for ask the good Lord to heal me, then it all comes full circle, right?
HUGS!
Patty
After eating supper at our "night out restuarant", we walked to the pier behind the restuarant and listened to the two man band playing 80's music. You could make requests and just enjoy the music, the water, the breeze blowing softly, and it just hit me all at once that we were all laughing/smiling at the same time. I didn't say anything to anyone but my eyes filled with tears of joy at just "living in the moment" and being so grateful to share such a special week with everyone. I thank God daily for each day I am healthy and able to live a mostly normal life!!
I go back to Effingham for chemo tomorrow. I am anxious to see what my bloodwork looks like as I had that extra week to let my blood build back up. It's a bad thing in a way that I had the extra week because my body needs the chemo to fight the cancer....but I must have a little of my daddy in me as I took a gamble and thought it was more important to live in the moment and spend that precious time with my family!!
We start one of our biggest programs back up on Sept. 1 (at work) and I am a little worried if I can handle the stress of it. There have been some major changes/other programs starting with it that are new and they always have "adjustments" for a few weeks .....so I am hopeful to be able to handle it all as I have always stressed over it in years past.....why would this year be any different, right? Well....stress adds to your chances of getting cancer so I REALLY don't need it now. I usually don't even sleep the night before the program starts......it's just a mental thing I need to get over!
It has been 6 months since I found out I had cancer.....some people with my type of cancer don't even make the six month anniversary......just depends on your overall health, age, nutrition, and FAITH! I have faith I will be here in six months. I will take each day one at a time. Every night as I lay in bed, I thank God for the day I just lived through and as healthy as I am. The next morning, I ask him to guide me through that day and each night, it all happens again in my prayers.
I go back to MD Anderson on October 4-6 for PET scan and dr consult to see if it is still showing signs of necrosis (the tumor is slowly dying) or if it is just stable and not getting any bigger....which is a good thing, too.
Sometimes I get so busy praying for all of my friends with ailments (cancer, MS, motorcycle accidents), I forget to ask God to remember me with His healing hands. I know God knows......and if all the people I am praying for ask the good Lord to heal me, then it all comes full circle, right?
HUGS!
Patty
Wednesday, August 10, 2011
On vacation in North Carolina
Our clan reached the Outer Banks on Saturday and have had wonderful weather so far. We have managed to go through two tent awnings due to wind so I will shop today until we purchase another tent awning to keep me in the shade. OR I could just go shopping everyday :~}
We saw about 25 dolphins the first day pretty close to shore just playing and swimming about. The waves are huge and forceful so I have not even been in the water. That's ok.....shade is my dr's orders due to medicines.
Our trip includes all five daughters (between Pat & I) and husbands/boyfriends/and Bill & Debbie Weiler. Bill & Pat drove over a 2 day period to get here and Debbie, Leslie, Rhett, McKenna & I flew. Everyone else also drove besides Bart who flew in a day late due to a "bachelors party canoe trip."
This is our "Eating Out....Kind of dress up night where Pat & I pick up the tab. It's kind of a thank you to all of our children for coming on this vacation with us and spending a week exclusively with us. Pat and I have taken them on vacation almost every year since we have been married (10 years).
I should be getting chemo today but with Dr. Dy's approval, we are scheduling it for next week. It will also give my blood time to rebuild even a little more than the usual two week schedule. I am feeling great....still no pain from my tumor, no nausea/scoots/or any other ugly side effects from my chemo or Tarceva pill that I take daily. Only the tiredness that lasts almost a week (5-6 days) afterwards.
I thank God that I am able to come on this trip as healthy as I am, that we all can be together and really appreciate each moment like never before. I praise God daily for my health, family, friends, and good drs. I also ask Him daily to guide the medical research teams to find a cure/new treatments for not only cancer, but also all the many diseases that have affected my friends and family. As I look out over this beautiful ocean this morning, I know there are alot of people who have it way worse than I have. I pray that they may have the strength and faith to recover and live a full life. I thank God for each good day I have..one by one. Every good day is one less bad day when you have cancer. I know it can change at any moment and it is in God's hands. I am totally comfortable with that. I know God will guide and direct me each minute of the day....and I praise Him for that!!
Happy Hump Day to my family & friends!!
Hugs!!
Patty
We saw about 25 dolphins the first day pretty close to shore just playing and swimming about. The waves are huge and forceful so I have not even been in the water. That's ok.....shade is my dr's orders due to medicines.
Our trip includes all five daughters (between Pat & I) and husbands/boyfriends/and Bill & Debbie Weiler. Bill & Pat drove over a 2 day period to get here and Debbie, Leslie, Rhett, McKenna & I flew. Everyone else also drove besides Bart who flew in a day late due to a "bachelors party canoe trip."
This is our "Eating Out....Kind of dress up night where Pat & I pick up the tab. It's kind of a thank you to all of our children for coming on this vacation with us and spending a week exclusively with us. Pat and I have taken them on vacation almost every year since we have been married (10 years).
I should be getting chemo today but with Dr. Dy's approval, we are scheduling it for next week. It will also give my blood time to rebuild even a little more than the usual two week schedule. I am feeling great....still no pain from my tumor, no nausea/scoots/or any other ugly side effects from my chemo or Tarceva pill that I take daily. Only the tiredness that lasts almost a week (5-6 days) afterwards.
I thank God that I am able to come on this trip as healthy as I am, that we all can be together and really appreciate each moment like never before. I praise God daily for my health, family, friends, and good drs. I also ask Him daily to guide the medical research teams to find a cure/new treatments for not only cancer, but also all the many diseases that have affected my friends and family. As I look out over this beautiful ocean this morning, I know there are alot of people who have it way worse than I have. I pray that they may have the strength and faith to recover and live a full life. I thank God for each good day I have..one by one. Every good day is one less bad day when you have cancer. I know it can change at any moment and it is in God's hands. I am totally comfortable with that. I know God will guide and direct me each minute of the day....and I praise Him for that!!
Happy Hump Day to my family & friends!!
Hugs!!
Patty
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