Tomorrow is the big day! CT scan time! It is weird, the more CT's I get the more worried over them I am! You would think it is old hat with having them every 3 to 4 months! It has been 18 months now! I have had over 10 easy since this whole ordeal has started. With each one, I am more nervous than the last! I am pretty sure it is because my numbers are going up, so I of course, go to the worst case scenario! I need to trust that God is in control! Something I really struggle with! I don't know if I have mentioned this before, but the verse that was totally written for me is, Matthew 6:34, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." If I could just live that verse, my life would be a LOT easier! But that is easier said than done! So I need prayer for my nerves and for the the CT scan to show no cancer growth or lets go even bigger and pray for more shrinkage!!!
Also, I do have another prayer request! I have not been allowed to floss or go to the dentist in over 18 months!!! (since chemo) I am also not allowed to brush hard, but that is where I cross the line! Anyways, I was brushing and noticed a spot that I thought was chocolate in my teeth that would not go away! Yep!! You guessed it.... MY FIRST CAVITY!!!! I noticed it on the Saturday before Christmas and I really think it has got so much bigger in just a couple days! So while I am waiting for my 2 hour time period drinking the contrast tomorrow down stairs from my doctor appointment, Jon will run upstairs and try to talk to the doctor on what we need to do! I called my dentist today. They have been closed for Christmas for the past 4 days!! But, they didn't know what to do!! They said that I had to ask my doctor. Well, getting a hold of my doctor on the phone is near impossible, so we are going to try to do it face to face tomorrow! So pray that Jon gets to talk to the doctor and find out what we need to do! Pray that I won't need to take time off chemo (I CAN NOT BELIEVE I JUST TYPED THAT!!) Also, pray that the cavity is not too bad (That it can just be filled!) and they can get it done quickly!! I would love to get it done before the 1st of the year for deductible reasons!! Yes!! Something we have been thinking about! Getting the CT Scan done, prescriptions filled, dentist done all before the 1st of January, to save money!!
A small struggle we have been having that could use prayer is our battle with Walgreens over filling my prescription. They have been lying to us, telling us that our insurance wouldn't fill my pain pills because I have too many of them, or its been too quickly since the last prescription (even though it was a BRAND NEW script!!) Jon finally lost it on them and screamed at them saying that I am not dealing with a broken finger or minor back problems, that I have stage 4 cancer!! He also had them look up my other prescriptions to prove I have cancer! Well they continued to blame the insurance company. (wow!! This sounds like I am a total pill head!! But they had to up my Norco milligrams because of my headaches! So, I went back to 10 mgs Norco and the dr wanted me to keep the 5 mg also to adjust my pills accordingly. I am allowed to take 20 mgs every 4 hours if I would like, I usually take 5mg and if it is bad 10mg) So Jon called the insurance company to scream at them. Before he could say anything, they tell him they PAID WALGREENS DAYS AGO FOR THOSE PRESCRIPTIONS!!!! They said they never had a problem with me having those prescriptions! So they had already gave Walgreens the $126 for each prescription and they wouldn't release them to me!!! So it just feels like EVERY LITTLE THING in our life is a fight right now! Even getting the medicine I am prescribed by a doctor! When Jon called them back to confront them, the pharmacist starts saying how she is afraid they are going to take her license and that is why she won't give us my pills! So after much arguing, she released my pills. So, now we have to move all my prescriptions to a different pharmacy because we do NOT have the energy to fight for what is rightfully mine every single month!!!! But now we have the headache of moving all my scripts!! UGH! It never ends!! LOL!!
The boys are doing well, we have another counseling session this Saturday. We are becoming so close over the journals we have been writing back and forth to each other. They really love doing it!! I highly suggest starting one with your children!! I can not believe some of the things they write!! I end up in tears because there are such sweet words coming from my boys! It is one of the best things I have done with them ever and they will have them for the rest of their lives!
Jonny (11 years old) is starting to worry that he has cancer!! He finally told me about a week ago. I also made the mistake of trying to shelter my kids and the day of the Newtown CT school shootings, I turned off the TV and we didn't talk about it! Well, the school did talk about it. My mistake BIG TIME!! I should have known better! Well Jonny didn't even make it half day when he called crying saying his stomach hurt. We picked him up from school and a little bit later he was fine. I just honestly cant imagine the stress my kids are under! Its so not fair!! PLEASE PRAY FOR MY LITTLE ONES!! I just remember how hard it was on Jon when his mom was battling cancer and he was 22 years old!! I am so afraid they are just going to snap! We will let the counselor know all this on Saturday though. At our last counseling session, she said she had games that she is preparing to play with them to get them to open up to her more! So hopefully she will be making some big steps with them soon!
We had a great Christmas!! We were truly blessed this holiday season! I am so sad it is over!! I feel like I blink and a whole month has passed me by! The boys were in a Christmas program at the church and it was beautiful! We got to be greeters before the program, which was a first for our family! Well, I hope everyone had a very merry Christmas celebrating the birth of our Lord, Jesus Christ! Thank you so much for all your prayers and for reading my book of a post!! Keep praying, God is listening!!!!! Love you all!!
Thursday, December 27, 2012
Thursday, December 20, 2012
Brain CT scan results are in!!
I will cut to the chase because I just finished this round of chemo and am not feeling so hot right now! My oncologist's head nurse called yesterday and said I was in the clear! They could not find anything wrong with my brain! Praise the Lord, what a blessing and gift this Christmas season!! Now I just have to deal with these headaches, but I will take them if it means no new cancer in the brain or any brain bleeds!!
Thank you all so much for all the prayers! AGAIN!! GOD IS LISTENING!!
Thank you all so much for all the prayers! AGAIN!! GOD IS LISTENING!!
Monday, December 17, 2012
Not just your run of the mill doctor appointment!
December 17th, 2012 HAPPY 3RD BIRTHDAY TO OUR SWEET GIRL, CAYLEE!!
I have quickly learned that cancer doesn't care if it's your wedding day, anniversary or in my case... my only daughter's birthday!! It takes priority! :( I have to stay on schedule and today was my doctor appointment. It was supposed to be no big deal, just a normal appointment of blood work, blood pressure reading and seeing the doctor. I made it early so we could get home and spend the day with Caylee! But, I had mentioned I was still getting the headaches, but they were not as bad. Then he reminded me that the reason they were not so bad was because he upped my pain meds! OH YA!! LOL! I didn't think of that! So he pretty much said enough is enough and ordered a CT Scan of my brain STAT! He didn't want me to have more Avastin tomorrow if it was causing a brain bleed. So we checked out and scheduled the CT and we had 45 minutes to spare. We walked to Panera and had a quick breakfast and then headed back to St Jude.
We checked in and it was the quickest CT I have EVER had!!!! They called me back and I was in and out in about 10 minutes, if that!! As I was getting off the machine, the guy who runs the machine said that one of his jobs is to put a rush on the scans that seem abnormal. He said he technically isn't the one who reads the scans, but that after seeing my scan, he would NOT be putting a STAT on my scan!!! PRAISE GOD!!! He said that my doctor would have my result either that afternoon or the following morning and that no news is good news!! So far so good! We have not heard from the doctor!
I have had such a peace about this whole situation. I have felt God's hand in this the entire time. I have not even worried about this at all. I just hope I get an answer for these headaches and not just told, "It's stress!!" Then, there is nothing really I can do for them. I am not willing to slow my life down, not for cancer and certainly not for headaches!! I want as normal life for my family as we can get! Please keep praying for us!! We have come so far!! Please pray for my chemo tomorrow and the days that I am in bed with the chemo, that they go quickly!! I HATE IT!!!!!! Thanks for listening! Love you all!!
I have quickly learned that cancer doesn't care if it's your wedding day, anniversary or in my case... my only daughter's birthday!! It takes priority! :( I have to stay on schedule and today was my doctor appointment. It was supposed to be no big deal, just a normal appointment of blood work, blood pressure reading and seeing the doctor. I made it early so we could get home and spend the day with Caylee! But, I had mentioned I was still getting the headaches, but they were not as bad. Then he reminded me that the reason they were not so bad was because he upped my pain meds! OH YA!! LOL! I didn't think of that! So he pretty much said enough is enough and ordered a CT Scan of my brain STAT! He didn't want me to have more Avastin tomorrow if it was causing a brain bleed. So we checked out and scheduled the CT and we had 45 minutes to spare. We walked to Panera and had a quick breakfast and then headed back to St Jude.
We checked in and it was the quickest CT I have EVER had!!!! They called me back and I was in and out in about 10 minutes, if that!! As I was getting off the machine, the guy who runs the machine said that one of his jobs is to put a rush on the scans that seem abnormal. He said he technically isn't the one who reads the scans, but that after seeing my scan, he would NOT be putting a STAT on my scan!!! PRAISE GOD!!! He said that my doctor would have my result either that afternoon or the following morning and that no news is good news!! So far so good! We have not heard from the doctor!
I have had such a peace about this whole situation. I have felt God's hand in this the entire time. I have not even worried about this at all. I just hope I get an answer for these headaches and not just told, "It's stress!!" Then, there is nothing really I can do for them. I am not willing to slow my life down, not for cancer and certainly not for headaches!! I want as normal life for my family as we can get! Please keep praying for us!! We have come so far!! Please pray for my chemo tomorrow and the days that I am in bed with the chemo, that they go quickly!! I HATE IT!!!!!! Thanks for listening! Love you all!!
Friday, December 14, 2012
CT Scan AGAIN!!
Here I am already.. waiting to get another scan done. It is already time for my next CT Scan, I didn't want to do chemo the week of New Years because the boys will be home and I would like to have a normal life with the kids as much as I can!! But the dr said no! He said my numbers are not falling as quickly as he would like and I have been off too much as it is. Then he thought about it more and said, "How about we do a CT Scan a few weeks early, see how things are doing and then decide from there the plan of treatment for that week!" He said depending on how the ct looks, we could skip it all together!!!! Or we could just do the infusion at the center and then not take the pump home. Or we could just skip a day and instead of going from Tuesday thru Thursday, I could go Wednesday thru Friday. I am really hoping for option one!!!
Then we talked about my new symptom... my headaches! They are painful! When I mentioned them to the dr he seemed pretty concerned.. He kept asking me what they feel like, when do they come on and how long they stick around for! We somehow got off the topic and I went home. He told me not to forget that someone would be calling me to set up that scan!
About a week later, Jon called the dr and he told him my headaches were too strong for the milligram of pain killer I am on. So he upped my dose. He then mentioned he was worried my headaches! He said they could be brought on from the Avastin. He said sometimes Avastin could cause a brain bleed. So he added my brain to list of areas he wanted scan. So we are praying it is not a brain bleed. I am thinking it is actually caused by my blood pressure. (Which he said was a possibility) I already had high blood pressure and then Avastin's number one side effect is dangerously high blood pressure. I am on blood pressure medication, which I take every single day at the same time religiously! But I am thinking I may just need a new BP medication. The doctor said it also could be that the cancer has travelled to my brain. But he said he really doubts that, he said my numbers are too low to think that, but it is a slight possibility!
So on December 27th, I will be having a CT scan on my abdomen, chest and brain. I am surprisingly calm. Don't get me wrong, we are praying everyday that everything is alright and that it is just an elevation in my blood pressure. But I am proud of myself, if this had happened to me 2 years ago, I would be flipping my lid! But I barely think about it!! I am a lot better at taking scary news now a days!!
I will do a little update on my family and how they are dealing with all this! Jon, Jonny and Josiah are still seeing a Christian counselor and that is going well. She said that she would like to see them weekly, but with our schedule, that is just not possible. She said we are under more stress than any other family she sees. She said that Jon and I are not spending enough alone time together. She said we need to be getting out of the house away from the kids for a total of 2 hours weekly. (I just don't see how that is even possible) She warned us that we will start to crack as a couple, if we don't start putting each other and our marriage first! She also said that Jon needs an outlet! He has a friend from work that loves to fish! He has been a VERY good friend to Jon and has taken him fishing with him a couple times! We are hoping that it will become a monthly activity for them to go fishing together for a few hours! Jonny and Caylee both celebrate their birthdays this month! Jonny turned 11 years old on the 7th and he went bowling with a couple of other boys his age from school and with his bestie Andrew Parker! He had a great time! Caylee's birthday is the 17th and she will be 3! (WOW!! How the heck did that happen?) So we are having a family party with her this weekend. Josiah is doing great!! We just had to adjust his meds for his ADHD, but the meds are working! PRAISE GOD!! He got his first report card while being on his meds and it was UNBELIEVABLY good!!! He got all B's and 1 C and in effort, attitude, following directions, observing classroom rules, etc.. he got either S+ or an O!!! We are so proud of him!! Both boys received awards yesterday at school! Jonny also got a great report card! So big improvement in school for both of them! Jonny's soccer season is over, so that means... IT'S BASKETBALL SEASON!! Both boys started playing basketball this week! I love this league! It is a Christian league that prays before practice, after practice and before all games!! Jesus is the center focus and winning the game is not what is important! This is the first time either boy has played basketball and they both LOVED IT!!! I have also started journal with the boys. I got them each a "special" journal and we write back and forth in it to each other. So I write a page in the journals to each of the boys, then leave them on their beds. They read the journal entry and write back and leave it on my bed. (THANK YOU PINTEREST FOR THE GREAT IDEA!) The boys LOVE this!! They have been very good about not reading each others journal and respecting each other's privacy. The things they write just melt my heart!! It is as good for me (if not better) as it is for them!! Not to mention they now have a piece of me forever!!! I love that we started this!
ANSWERED PRAYERS!!! God is really listening and answering our prayers. The big answer to prayer was... WE GOT THE GRANT!! We are getting an $1800 check to pay my parents the back rent we owe them!!! It is such a relief!! But the bummer is, since they usually only pay out $500 to a person, they said they couldn't help us with Christmas! (Which is totally understandable!) So I literally hang up the phone after finding out about getting the grant and there is a knock at my door. It's Julie (Lopez) Timmins. One of my really good friends for over 20 years. She came to drop off $450 from her and her boss to help pay for our Christmas!!! I couldn't believe it, I didn't even have a chance to start to worry about what we were going to do to finish up Christmas and God stepped in using my friend and her boss to provide for us!! Thank you so much Julie! We also have had a couple of blessings through my neighbor and friend Ana! She is such a special woman who is constantly thinking of others before herself! If she can do it for you, she will make it happen whether it is a bother to her or not! She gives without ever expecting anything in return. She has really become one of our family members! One of her co-workers gave us a big bag of groceries and another one of her co workers bought each one of my kids a couple of gifts for Christmas (even bought Jon and I one!! I am dying to open it, but Jon won't let me!!!!) Neither of her co workers have ever met, talked to us or seen us! Just very generous people!!
I hate being in need! I hate it. But I love that this time of year my children get to see God's work in our lives. They get to come into contact with living angels and they are learning first hand, to ALWAYS help those in need! We don't hide from our kids that people are helping us and blessing us. We want them to see God's love and the good in people, even strangers who have never even laid eyes on us!! Hopefully one day we will be back on our feet and we can bless others in need!
So please keep praying for me and my upcoming CT scan! Pray for my family to keep strong and together! For my kids to cling to God and not run from him! Keep praying, God is listening and answering your prayers!! Thank you all so much for praying for us!
Then we talked about my new symptom... my headaches! They are painful! When I mentioned them to the dr he seemed pretty concerned.. He kept asking me what they feel like, when do they come on and how long they stick around for! We somehow got off the topic and I went home. He told me not to forget that someone would be calling me to set up that scan!
About a week later, Jon called the dr and he told him my headaches were too strong for the milligram of pain killer I am on. So he upped my dose. He then mentioned he was worried my headaches! He said they could be brought on from the Avastin. He said sometimes Avastin could cause a brain bleed. So he added my brain to list of areas he wanted scan. So we are praying it is not a brain bleed. I am thinking it is actually caused by my blood pressure. (Which he said was a possibility) I already had high blood pressure and then Avastin's number one side effect is dangerously high blood pressure. I am on blood pressure medication, which I take every single day at the same time religiously! But I am thinking I may just need a new BP medication. The doctor said it also could be that the cancer has travelled to my brain. But he said he really doubts that, he said my numbers are too low to think that, but it is a slight possibility!
So on December 27th, I will be having a CT scan on my abdomen, chest and brain. I am surprisingly calm. Don't get me wrong, we are praying everyday that everything is alright and that it is just an elevation in my blood pressure. But I am proud of myself, if this had happened to me 2 years ago, I would be flipping my lid! But I barely think about it!! I am a lot better at taking scary news now a days!!
I will do a little update on my family and how they are dealing with all this! Jon, Jonny and Josiah are still seeing a Christian counselor and that is going well. She said that she would like to see them weekly, but with our schedule, that is just not possible. She said we are under more stress than any other family she sees. She said that Jon and I are not spending enough alone time together. She said we need to be getting out of the house away from the kids for a total of 2 hours weekly. (I just don't see how that is even possible) She warned us that we will start to crack as a couple, if we don't start putting each other and our marriage first! She also said that Jon needs an outlet! He has a friend from work that loves to fish! He has been a VERY good friend to Jon and has taken him fishing with him a couple times! We are hoping that it will become a monthly activity for them to go fishing together for a few hours! Jonny and Caylee both celebrate their birthdays this month! Jonny turned 11 years old on the 7th and he went bowling with a couple of other boys his age from school and with his bestie Andrew Parker! He had a great time! Caylee's birthday is the 17th and she will be 3! (WOW!! How the heck did that happen?) So we are having a family party with her this weekend. Josiah is doing great!! We just had to adjust his meds for his ADHD, but the meds are working! PRAISE GOD!! He got his first report card while being on his meds and it was UNBELIEVABLY good!!! He got all B's and 1 C and in effort, attitude, following directions, observing classroom rules, etc.. he got either S+ or an O!!! We are so proud of him!! Both boys received awards yesterday at school! Jonny also got a great report card! So big improvement in school for both of them! Jonny's soccer season is over, so that means... IT'S BASKETBALL SEASON!! Both boys started playing basketball this week! I love this league! It is a Christian league that prays before practice, after practice and before all games!! Jesus is the center focus and winning the game is not what is important! This is the first time either boy has played basketball and they both LOVED IT!!! I have also started journal with the boys. I got them each a "special" journal and we write back and forth in it to each other. So I write a page in the journals to each of the boys, then leave them on their beds. They read the journal entry and write back and leave it on my bed. (THANK YOU PINTEREST FOR THE GREAT IDEA!) The boys LOVE this!! They have been very good about not reading each others journal and respecting each other's privacy. The things they write just melt my heart!! It is as good for me (if not better) as it is for them!! Not to mention they now have a piece of me forever!!! I love that we started this!
ANSWERED PRAYERS!!! God is really listening and answering our prayers. The big answer to prayer was... WE GOT THE GRANT!! We are getting an $1800 check to pay my parents the back rent we owe them!!! It is such a relief!! But the bummer is, since they usually only pay out $500 to a person, they said they couldn't help us with Christmas! (Which is totally understandable!) So I literally hang up the phone after finding out about getting the grant and there is a knock at my door. It's Julie (Lopez) Timmins. One of my really good friends for over 20 years. She came to drop off $450 from her and her boss to help pay for our Christmas!!! I couldn't believe it, I didn't even have a chance to start to worry about what we were going to do to finish up Christmas and God stepped in using my friend and her boss to provide for us!! Thank you so much Julie! We also have had a couple of blessings through my neighbor and friend Ana! She is such a special woman who is constantly thinking of others before herself! If she can do it for you, she will make it happen whether it is a bother to her or not! She gives without ever expecting anything in return. She has really become one of our family members! One of her co-workers gave us a big bag of groceries and another one of her co workers bought each one of my kids a couple of gifts for Christmas (even bought Jon and I one!! I am dying to open it, but Jon won't let me!!!!) Neither of her co workers have ever met, talked to us or seen us! Just very generous people!!
I hate being in need! I hate it. But I love that this time of year my children get to see God's work in our lives. They get to come into contact with living angels and they are learning first hand, to ALWAYS help those in need! We don't hide from our kids that people are helping us and blessing us. We want them to see God's love and the good in people, even strangers who have never even laid eyes on us!! Hopefully one day we will be back on our feet and we can bless others in need!
So please keep praying for me and my upcoming CT scan! Pray for my family to keep strong and together! For my kids to cling to God and not run from him! Keep praying, God is listening and answering your prayers!! Thank you all so much for praying for us!
Wednesday, November 28, 2012
Business as usual!!
I hope everyone had a blessed Thanksgiving! We had actually had 2 Thanksgivings. We celebrated at our house with my side of the family on Thanksgiving day. We had almost 30 people over!! The chaos was great, I loved every minute of it! Then, the Sunday after Thanksgiving, we went to Jon's brothers house and had a little celebration with grandma and grandpa Bottroff (Jon's grandparents) and our 2 families! It was so fun and I want to thank my sister in law for opening her home to us after literally giving birth to twins a month ago! She is just amazing. I have so much to be thankful about this year! It is so crazy to think it was just a year ago that I almost died 3 times within a 1 months times span. But holding a new baby can do WONDERS for the soul! I think I am becoming addicted to holding the new babies! Since they have been born we have been over there about 7 times (including hospital visits) to see them! LOL!! Angie (my sister in law) is probably sick of us! I just have to share a pic of me with the babies!
Me holding Sierra (looking at camera) and Sydney!
I also had a birthday!! I am now 35 years old! That just seems unreal! Wasn't I just graduating high school? So my sister and my cousin (with the help of a few others) threw me a big party! My dream has always been to go to Hawaii one day, but I doubt that ever happens, so they brought Hawaii to me! It was a great night and I had an absolute blast!! Here are a couple pics from that night!
THE AMAZING CAKE!!!!!!
Me with my party planners, Betsy and Shayla (yes, that is baby slobber!)
FRIENDS!!
Dee, Tawnya, Krista, Me
Susie
PLAYING LCR!!!
MY BEAUTIFUL FAMILY
Well, there is really nothing new going on with me! I am kind of starting to run myself ragged! My doctor keeps telling me I need to rest more, but I feel there is no time to slow down, especially now with the holidays coming. I can not sleep even with my sleeping pill! I don't know what to do! I just feel like there is not enough hours in the day! My last dr visit and chemo was the Monday before Thanksgiving. He told me to stay on the couch and do nothing for Thanksgiving. I told him that would be a little tough considering I am hosting a party of about 30 people! He flipped his lid. He said, "I don't know what I am going to do with you?!" I just told him life has to go on. I think its funny, people actually ask if I take daily naps!! Let me answer that for you... NO!!!!! I have 3 kids!! I am getting about 5 to 6 hours of sleep daily. I fall asleep around 2am and wake up around 8am. Sometimes it catches up with me and I will be on the couch and the next thing I know I am waking up and I didn't even realize I had fallen asleep, but I have been drinking a lot of coffee to combat that!
On the kids front... Jonny and Joey are still in counseling! Jonny just ended his Soccer season! I am always sad when it is over. Now Jonny and Joey both start basketball in December! The kids are all also in a couple of Christmas programs next month and both Caylee and Jonny will be celebrating their birthdays! I will still be having chemo every other week despite being the holiday season. Dr P refused to let me skip this month. He said he wants to stay on top of it, instead of letting it get away from us! So Jon will be staying home from work more because the kids will be home from school for 2 weeks and I can't do it alone! Pray for our finances! I feel like we catch up, get behind, catch up, get behind,...Right now we are behind. But, I fully believe the Lord will come thru, he is always faithful!!
Ok! The prayer requests!! Continue to pray that the cancer shrinks. i would really like to see the numbers come down faster than they are. They are still only, "Trickling" as the Dr put it! Also pray for Joey that we get his meds under control and figure out his correct dosage! Also, pray for Caylee to get potty trained, still having problems there! Pray also that her valves heal by themselves by August!!
Keep praying!!! HE IS LISTENING!!!! Love you all!!
Tuesday, October 16, 2012
WE BELIEVE IN MIRACLES!!!
So let me start off by saying, I had been going to dark places. NOTHING in our life seemed to be going well! It was starting to get difficult to keep the faith. We were in a valley and needed a BIG boost to start going back up the peak! Between the cancer numbers, ADHD, the MOUNTING bills we can't pay, Caylee's UTI's, chemo, dr appts (not just my appts either)... we were just not seeing a light at the end of the tunnel! After that pretty picture was painted for you, I will let you all know what has happened in the past week!
Friday October 5th, I woke up just feeling so down about this stupid CT Scan. I was SO close to just calling and cancelling it! My thoughts were, "I was already told that there would be growth and I KNOW the devil will use that to get a hold of my mind and really bring me down even further than I already am." This scan wasn't going to heal me and also I just thought it was too soon to be doing one before we gave the chemo a little time to work. I had only had 2 rounds of chemo at this point. My mom, who is my voice of reason, even agreed with me and told me if I really felt that deeply about it, just postpone it! Not to mention, they scheduled it for 3:45pm and you have to fast before it. Then, you have to go in 2 hours before the procedure just to drink the nasty contrast. I was not looking forward to starving the entire day. But, I decided just to get it over with. I went in and did the scan. They told me that I would have my results by my dr appt on the following Tuesday.
I stressed all weekend and couldn't stop thinking about the stupid scan! I was more nervous about this scan than any other scan I have had. Tuesday (October 9th) finally came. For some reason, they scheduled my dr appt and chemo on the same day. Usually my appt is on Monday and then I come back the next day for treatment. But this time, they did it all in one shot. After waiting what seems an eternity, Dr Paneres walks in. He started off by reminding me that he was pretty sure the cancer had grown because my cancer numbers were at 35 before my gall bladder surgery and now they have jumped to 62 and have leveled out there. At this point, I got a lump in my throat and I geared up for the blow. Then he turned to me and said, "But for some reason, you show signs of shrinkage!" He said he was so surprised and didn't know how it happened. To that I just said, "It's all GOD!! He did this!" Then he told me that he couldn't wait for this appointment because he had more good news. He then went into reminding me how I am on my last chemo, I am allergic to 1, 2 other ones do not work on my tumors and I am on the 4th and final chemo. Next step for me is clinical trials. I said, Of course I remember! He looked at me and said, "They just approved a new colon cancer drug!! You are a perfect candidate for it! They call it the super Avastin!" I was shocked!! I am still shocked! This appointment was the biggest miracle we have received since this nightmare began! He said that I will not be starting this drug anytime soon since the cocktail I am on is working so well. But it is just another step before clinical trials if we need it! Since I was having chemo right after my appt, he wrapped it up quickly so I wouldn't be late to chemo. Of course now I have a billion questions to ask him about everything. Like, what the name of that drug is!! LOL!! Also, how much shrinkage did I have. Jon heard, "I showed signs of shrinkage" I heard, "There was shrinkage"! Two totally different things! I think anyways! I guess it really doesn't matter, because our prayer wasn't even for it to shrink. I am so unfaithful, I was just praying for it not to spread because I was positive that it had grown. So I just kept praying that it didn't spread to any other areas! I am so ashamed of myself and unworthy of his mercy! Even in my last post I had mentioned that it was hard to remember that God is bigger than the cancer, but I STILL did not get it, I honestly still cant fully wrap my head around his greatness! Needless to say, chemo was not easier physically to go through, but mentally, it was a breeze!!! I was on cloud 9 going to chemo!!
The next day, Jon received a phone call from Caylee's urologist. He asked if we would rather come in for the results or do a phone appointment right then. Of course we wanted to save the $50 co-pay and get the results right then instead of waiting until the 17th to hear about our baby. So to wrap up what he said, he said that her valves are broken. So the valves that stop the urine from going from the bladder back up to the kidneys are not working. He said we have got to get her potty trained (which I have been trying to do for a YEAR now!!) I have potty trained probably around 75 kids in my life being a preschool teacher and I can NOT get my own daughter to go poo poo in the potty!! REALLY??!! He said she needs to stay on a continual dose of antibiotics until she is fully potty trained and that is why he needs it to happen quickly because he does not want her getting immune to the antibiotics. He said he thinks she may grow out of this problem, but if she doesn't, she will need surgery to repair the valves. He said that he wants to see her again in AUGUST!!! He said that will give her time to potty train and hopefully let the valves fix themselves. SO ANOTHER HUGE ANSWER TO PRAYER!!!
This was our week of miracles. God is SO good and we are so undeserving of his grace!! I just can't tell you how small I feel and really unfaithful. Keep praying for us! We still have a long way to go, but we are getting there! HE REALLY IS LISTENING TO OUR CRIES!!! Thank you all for each and every prayer you say for me and my family! We appreciate it more than you know!
Friday October 5th, I woke up just feeling so down about this stupid CT Scan. I was SO close to just calling and cancelling it! My thoughts were, "I was already told that there would be growth and I KNOW the devil will use that to get a hold of my mind and really bring me down even further than I already am." This scan wasn't going to heal me and also I just thought it was too soon to be doing one before we gave the chemo a little time to work. I had only had 2 rounds of chemo at this point. My mom, who is my voice of reason, even agreed with me and told me if I really felt that deeply about it, just postpone it! Not to mention, they scheduled it for 3:45pm and you have to fast before it. Then, you have to go in 2 hours before the procedure just to drink the nasty contrast. I was not looking forward to starving the entire day. But, I decided just to get it over with. I went in and did the scan. They told me that I would have my results by my dr appt on the following Tuesday.
I stressed all weekend and couldn't stop thinking about the stupid scan! I was more nervous about this scan than any other scan I have had. Tuesday (October 9th) finally came. For some reason, they scheduled my dr appt and chemo on the same day. Usually my appt is on Monday and then I come back the next day for treatment. But this time, they did it all in one shot. After waiting what seems an eternity, Dr Paneres walks in. He started off by reminding me that he was pretty sure the cancer had grown because my cancer numbers were at 35 before my gall bladder surgery and now they have jumped to 62 and have leveled out there. At this point, I got a lump in my throat and I geared up for the blow. Then he turned to me and said, "But for some reason, you show signs of shrinkage!" He said he was so surprised and didn't know how it happened. To that I just said, "It's all GOD!! He did this!" Then he told me that he couldn't wait for this appointment because he had more good news. He then went into reminding me how I am on my last chemo, I am allergic to 1, 2 other ones do not work on my tumors and I am on the 4th and final chemo. Next step for me is clinical trials. I said, Of course I remember! He looked at me and said, "They just approved a new colon cancer drug!! You are a perfect candidate for it! They call it the super Avastin!" I was shocked!! I am still shocked! This appointment was the biggest miracle we have received since this nightmare began! He said that I will not be starting this drug anytime soon since the cocktail I am on is working so well. But it is just another step before clinical trials if we need it! Since I was having chemo right after my appt, he wrapped it up quickly so I wouldn't be late to chemo. Of course now I have a billion questions to ask him about everything. Like, what the name of that drug is!! LOL!! Also, how much shrinkage did I have. Jon heard, "I showed signs of shrinkage" I heard, "There was shrinkage"! Two totally different things! I think anyways! I guess it really doesn't matter, because our prayer wasn't even for it to shrink. I am so unfaithful, I was just praying for it not to spread because I was positive that it had grown. So I just kept praying that it didn't spread to any other areas! I am so ashamed of myself and unworthy of his mercy! Even in my last post I had mentioned that it was hard to remember that God is bigger than the cancer, but I STILL did not get it, I honestly still cant fully wrap my head around his greatness! Needless to say, chemo was not easier physically to go through, but mentally, it was a breeze!!! I was on cloud 9 going to chemo!!
The next day, Jon received a phone call from Caylee's urologist. He asked if we would rather come in for the results or do a phone appointment right then. Of course we wanted to save the $50 co-pay and get the results right then instead of waiting until the 17th to hear about our baby. So to wrap up what he said, he said that her valves are broken. So the valves that stop the urine from going from the bladder back up to the kidneys are not working. He said we have got to get her potty trained (which I have been trying to do for a YEAR now!!) I have potty trained probably around 75 kids in my life being a preschool teacher and I can NOT get my own daughter to go poo poo in the potty!! REALLY??!! He said she needs to stay on a continual dose of antibiotics until she is fully potty trained and that is why he needs it to happen quickly because he does not want her getting immune to the antibiotics. He said he thinks she may grow out of this problem, but if she doesn't, she will need surgery to repair the valves. He said that he wants to see her again in AUGUST!!! He said that will give her time to potty train and hopefully let the valves fix themselves. SO ANOTHER HUGE ANSWER TO PRAYER!!!
This was our week of miracles. God is SO good and we are so undeserving of his grace!! I just can't tell you how small I feel and really unfaithful. Keep praying for us! We still have a long way to go, but we are getting there! HE REALLY IS LISTENING TO OUR CRIES!!! Thank you all for each and every prayer you say for me and my family! We appreciate it more than you know!
Tuesday, October 2, 2012
BUSY, BUSY, BUSY!!
WE HAVE BEEN SO BUSY!! I have no other excuse for taking so long between blog posts! Jon is working late, again, so I thought I would take this alone time and catch everyone up on the lives of the Adamik family! I think I will do things a little different and instead of going by dates, I will go by the individual person in the family.
We will start with Caylee. She had her appointment with the urologist who did an abdominal ultrasound and told us she needed to have the VCUG. Then proceeded to ask why we denied the procedure with St Jude! We explained that the St Jude radiologists seemed reluctant to do it and we just didn't feel comfortable with her having to do that test with only having 1 UTI. He agreed with us and then said that he would be sending her to CHOC (Children's Hospital of Orange County) to have the procedure done. So, the time came (Friday September 28th) and we took her in to have it done. St Jude had told us it would take over an hour for the whole procedure, start to finish!!! CHOC told us that they would have it done in under 15 mins, but they still refused to give her any sort of sedation. Jon was brave enough to take her back and hold her down while they put the catheter in and emptied her bladder, then filled it up with contrast and take x-rays. They walked back into the waiting room where my mom, Susie and I were waiting on pins and needles and Caylee flew into my arms and just cried so hard!! She then said, "They took my diaper off!!" She just felt so violated and uncomfortable. It was the worst moment of my life and I have had a LOT of bad moments! I am crying just thinking about it. Thankfully, my mom had come up with the idea to buy her a couple of little gifts to give her when she came out and we gave them to her right then! 2 seconds later she was oohing and ahhing over the new Strawberry Shortcake doll and lotion set my mom and I bought her. I on the other hand, was not so easily over it. The doctor told us she would be over it physically right away! So after nap, we took her and the boys to Disneyland with my sister and her sons!
We have an appt with the urologist on October 17th to go over the results of the VCUG!
Josiah has been doing well! We found a christian counselor! He has been seeing her every other week. He doesn't like going and getting him to participate is a chore, but he is going!! She told us that we have done a great job with him by encouraging his love of being a "Godiner" (this is exactly how he spells gardener!) He loves to plant, water and weed! We have actually eaten his peas for dinner! She told us that gardening is very therapeutic and calming! I just wanted to keep him busy and out of trouble! LOL!
School wise he is doing well also. We have parent/teacher conferences coming up next week, but we are not hearing any negatives like we were in the previous years. He, for the first time, started going straight up to the table and doing his homework without me pulling teeth. I mean he literally comes home and pulls his homework out and does it quietly!! ITS AMAZING!! But let me tell you, that little boy keeps me on my toes!! He is a busy little guy!!
Jonny has also started going to counseling with his brother! He likes it a lot more that Joey does. He actually talks and is interested in it! Hopefully it will rub off on his brother!
He loves school and told me he has goals this year to be proficient in Language Arts!! I was so proud of him. Having goals is a big thing for me! I want my children to reach for the stars! He also starts band tomorrow! He is very excited about that too!
Soccer is his love though, we have been in full soccer mode for the past month! He has soccer practice 2 times a week for 1.5 hours and then a game on Saturday! My husband and dad think they are the coaches though! I have told Jonny to tune them out and listen to his real coach! ha ha! Poor kid! But, if you ever want to see pure joy, just watch Jonny play soccer. He has a permanent smile on his face the entire time!!
Jon is busier than ever! The poor guy never stops. He takes the boys to counseling, works full time, never misses a soccer games, has gone to every one of Caylee's dr appts and tries to make it to as many of mine as he can. Every so often (not often enough) he tries to get away with the guys and do something on his own. He really wants to go hunting with a buddy for the day next week and I am praying it happens!
Now we end with me!! I am already so over chemo!! I have had 2 rounds already and the week in between just flies by! I am trying to keep myself really busy by planning baby showers, birthdays and upcoming holidays. I feel like if I keep busy, the cancer won't catch up to me! I have a CT Scan on Friday and I think we are all afraid of what the results are going to be. Even my dr mentioned that they might not be good because of my recent surgery or something like that. I have stopped paying attention to be honest. I just do what I am told and go through all the motions like a good girl! I know that the cancer has grown because my numbers have been through the roof! I had been off for a while though and I need to remember that. It is just so easy for the devil to play tricks with my mind. I have been really trying to get into the Word and Jon and I started a prayer journal that we actually have been doing pretty good at keeping up with! I have also started going to the Friday morning ladies Bible study, so what did I expect. Of course Satan would come attacking!! But luckily my God is way bigger than all of this!! He is way bigger than cancer, I know that sounds like a no-brainer, but when you are in this storm, it is sometimes hard to see that!!
If you are still reading this, THANK YOU FRIEND!!! Keep praying for my family, HE IS LISTENING!!!!! Love you all so much!!
We will start with Caylee. She had her appointment with the urologist who did an abdominal ultrasound and told us she needed to have the VCUG. Then proceeded to ask why we denied the procedure with St Jude! We explained that the St Jude radiologists seemed reluctant to do it and we just didn't feel comfortable with her having to do that test with only having 1 UTI. He agreed with us and then said that he would be sending her to CHOC (Children's Hospital of Orange County) to have the procedure done. So, the time came (Friday September 28th) and we took her in to have it done. St Jude had told us it would take over an hour for the whole procedure, start to finish!!! CHOC told us that they would have it done in under 15 mins, but they still refused to give her any sort of sedation. Jon was brave enough to take her back and hold her down while they put the catheter in and emptied her bladder, then filled it up with contrast and take x-rays. They walked back into the waiting room where my mom, Susie and I were waiting on pins and needles and Caylee flew into my arms and just cried so hard!! She then said, "They took my diaper off!!" She just felt so violated and uncomfortable. It was the worst moment of my life and I have had a LOT of bad moments! I am crying just thinking about it. Thankfully, my mom had come up with the idea to buy her a couple of little gifts to give her when she came out and we gave them to her right then! 2 seconds later she was oohing and ahhing over the new Strawberry Shortcake doll and lotion set my mom and I bought her. I on the other hand, was not so easily over it. The doctor told us she would be over it physically right away! So after nap, we took her and the boys to Disneyland with my sister and her sons!
We have an appt with the urologist on October 17th to go over the results of the VCUG!
Josiah has been doing well! We found a christian counselor! He has been seeing her every other week. He doesn't like going and getting him to participate is a chore, but he is going!! She told us that we have done a great job with him by encouraging his love of being a "Godiner" (this is exactly how he spells gardener!) He loves to plant, water and weed! We have actually eaten his peas for dinner! She told us that gardening is very therapeutic and calming! I just wanted to keep him busy and out of trouble! LOL!
School wise he is doing well also. We have parent/teacher conferences coming up next week, but we are not hearing any negatives like we were in the previous years. He, for the first time, started going straight up to the table and doing his homework without me pulling teeth. I mean he literally comes home and pulls his homework out and does it quietly!! ITS AMAZING!! But let me tell you, that little boy keeps me on my toes!! He is a busy little guy!!
Jonny has also started going to counseling with his brother! He likes it a lot more that Joey does. He actually talks and is interested in it! Hopefully it will rub off on his brother!
He loves school and told me he has goals this year to be proficient in Language Arts!! I was so proud of him. Having goals is a big thing for me! I want my children to reach for the stars! He also starts band tomorrow! He is very excited about that too!
Soccer is his love though, we have been in full soccer mode for the past month! He has soccer practice 2 times a week for 1.5 hours and then a game on Saturday! My husband and dad think they are the coaches though! I have told Jonny to tune them out and listen to his real coach! ha ha! Poor kid! But, if you ever want to see pure joy, just watch Jonny play soccer. He has a permanent smile on his face the entire time!!
Jon is busier than ever! The poor guy never stops. He takes the boys to counseling, works full time, never misses a soccer games, has gone to every one of Caylee's dr appts and tries to make it to as many of mine as he can. Every so often (not often enough) he tries to get away with the guys and do something on his own. He really wants to go hunting with a buddy for the day next week and I am praying it happens!
Now we end with me!! I am already so over chemo!! I have had 2 rounds already and the week in between just flies by! I am trying to keep myself really busy by planning baby showers, birthdays and upcoming holidays. I feel like if I keep busy, the cancer won't catch up to me! I have a CT Scan on Friday and I think we are all afraid of what the results are going to be. Even my dr mentioned that they might not be good because of my recent surgery or something like that. I have stopped paying attention to be honest. I just do what I am told and go through all the motions like a good girl! I know that the cancer has grown because my numbers have been through the roof! I had been off for a while though and I need to remember that. It is just so easy for the devil to play tricks with my mind. I have been really trying to get into the Word and Jon and I started a prayer journal that we actually have been doing pretty good at keeping up with! I have also started going to the Friday morning ladies Bible study, so what did I expect. Of course Satan would come attacking!! But luckily my God is way bigger than all of this!! He is way bigger than cancer, I know that sounds like a no-brainer, but when you are in this storm, it is sometimes hard to see that!!
If you are still reading this, THANK YOU FRIEND!!! Keep praying for my family, HE IS LISTENING!!!!! Love you all so much!!
Tuesday, September 4, 2012
Life after surgery!
I wanted to let you all know that I am doing very well after my gallbladder surgery! I went into the hospital at 10am (of course I was fashionably late and they were waiting for me!) and was released at 3:30pm! My surgery started at 12pm. When I got home I felt alright, by 10pm, I was feeling really REALLY bad! I made myself wake up every 2 hours to walk around the house. They had told me the more you walk the better you feel because it gets the gas that they fill you up with out! Jon and I took our nightly walk, but only made it a couple houses down!
The next day (Saturday) I was extremely sore and tired! I felt as if someone took a bat to my stomach a couple times. I did muster up the strength to go to Jonny's soccer tournament! He had 2 games that I was able to attend. We also went to lunch in between the games. I did find time in there to take a quick 45 minute power nap! :) Tonight we made it half way for our nightly walk!
Sunday I was feeling even better. I went to church and came home and took a 2 hour nap. After my nap we ran to Lowes and got some supplies to finally paint the hallway. I really wanted to help, but Jon wouldn't let me. So I read my Karen Kingsbury book! HA HA!! I was taught I have to obey my husband right? Tonight we walked our normal distance for our walk!! Getting up from sitting position was a KILLER!!
Monday we almost finished the hall, by we, I mean Jon and my dad!! I pretty much did nothing! I did continue to read! hee hee! By Monday I felt sore still and I was VERY bruised! But much better than Friday night!! We skipped our walk this night
Tuesday was business as usual! Kids back to school, house cleaned, a little shopping, homework, dinner made, soccer, baths, bed for the kids and Internet time for me! I feel like I have been kicked in the ribs and it hurts to breathe deep and I am a little slow getting up and down, but other than that, I am back to my old self! I am back to chemo next week!
UPDATE ON CAYLEE~ we got referred to the head of the pediatric urology depart of CHOC and UCI (yes he is the head of both!) His name is Antoine Khoury! We have an appointment with him tomorrow morning!
Also tomorrow we got Joey an appointment with a Christian counselor!! It took us about 15 phone calls, but finally we found someone whose practice is CHRIST CENTERED!!!! So that is tomorrow evening!
Please keep on praying for my little family! I feel like we are cracking under pressure! So every little prayer matters!
Gotta go on our nightly walk now!! BYE!
The next day (Saturday) I was extremely sore and tired! I felt as if someone took a bat to my stomach a couple times. I did muster up the strength to go to Jonny's soccer tournament! He had 2 games that I was able to attend. We also went to lunch in between the games. I did find time in there to take a quick 45 minute power nap! :) Tonight we made it half way for our nightly walk!
Sunday I was feeling even better. I went to church and came home and took a 2 hour nap. After my nap we ran to Lowes and got some supplies to finally paint the hallway. I really wanted to help, but Jon wouldn't let me. So I read my Karen Kingsbury book! HA HA!! I was taught I have to obey my husband right? Tonight we walked our normal distance for our walk!! Getting up from sitting position was a KILLER!!
Monday we almost finished the hall, by we, I mean Jon and my dad!! I pretty much did nothing! I did continue to read! hee hee! By Monday I felt sore still and I was VERY bruised! But much better than Friday night!! We skipped our walk this night
Tuesday was business as usual! Kids back to school, house cleaned, a little shopping, homework, dinner made, soccer, baths, bed for the kids and Internet time for me! I feel like I have been kicked in the ribs and it hurts to breathe deep and I am a little slow getting up and down, but other than that, I am back to my old self! I am back to chemo next week!
UPDATE ON CAYLEE~ we got referred to the head of the pediatric urology depart of CHOC and UCI (yes he is the head of both!) His name is Antoine Khoury! We have an appointment with him tomorrow morning!
Also tomorrow we got Joey an appointment with a Christian counselor!! It took us about 15 phone calls, but finally we found someone whose practice is CHRIST CENTERED!!!! So that is tomorrow evening!
Please keep on praying for my little family! I feel like we are cracking under pressure! So every little prayer matters!
Gotta go on our nightly walk now!! BYE!
Thursday, August 30, 2012
SURGERY ON FRIDAY!!
On August 12th thru the 17th, We went to Laughlin for our yearly vacation and I had a great time! We did run into some problems, my cousin's boat broke for the first day we were there and then while my family was on the way home, my cousin's dad had a heart attack on the lake! That was scary for all of us! Thankfully the Lord was with him and held him in his loving arms the whole time! He had a surgery while in the hospital in Laughlin and he is now a new man! He is home and feeling a LOT better! Praise God!! But the trip was much needed and thankfully everyone is home safe and sound now!
So, before we left for vacation, we found out that Caylee, our 2 year old daughter had been suffering with a UTI (urinary tract infection) She was put on antibiotics before we left and our doctor told us that it was very uncommon for a child her age to be suffering with UTI's. So the week before we left on vacation, the dr called us and said that the urine sample we dropped off showed that she still had the UTI! He told us he wanted to run a couple of non invasive tests on her and it would have to happen at the hospital. The first test was just a kidney ultrasound. The next test is called a VCUG, basically what they do is stick a catheter inside of her and fill her bladder with a dye until it is almost over filled. They said it would be painful and then very uncomfortable because she will need to pee so badly and can not relieve herself for an hour while they take xrays to see if all her valves are working. After hearing this, I was VERY upset and demanded that they give her some kind of sedation so she is not freaking out screaming for an hour in terror! He said that was fine and he would call the hospital and handle it! He then prescribed a new antibiotic and then we left for vacation for a week. She finished the meds while we were out of town.
August 20th~ It was the Monday after we got back from vacation and I had my ultrasound for my gallbladder. By this time, I had worked myself into thinking my liver was shutting down on me and that was what the pain was. (The gallbladder sits right underneath the liver and is attached to it by a tube, yes that is my scientific word for it! LOL!) Knowing that Caylee had her tests the next day, we decided it would be best if Jon went to work because I really needed him the next day for her. I can handle what they are throwing at me, but I am a blubbering mess when it comes to my kids! So it was just me and my mom that day. I had the ultrasound done and luckily I had a great tech. She said with all that is going on in my life, she wasn't allowed to technically diagnose me but she pretty much told me she had found gallstones! So I was relieved! She said the dr would call me within 2 days to let me know.
August 21st~This was the day we were dreading for 2 weeks. The day we went to the hospital with Caylee and did the kidney ultrasound and the VCUG. Here are a couple of pics from that day
So, before we left for vacation, we found out that Caylee, our 2 year old daughter had been suffering with a UTI (urinary tract infection) She was put on antibiotics before we left and our doctor told us that it was very uncommon for a child her age to be suffering with UTI's. So the week before we left on vacation, the dr called us and said that the urine sample we dropped off showed that she still had the UTI! He told us he wanted to run a couple of non invasive tests on her and it would have to happen at the hospital. The first test was just a kidney ultrasound. The next test is called a VCUG, basically what they do is stick a catheter inside of her and fill her bladder with a dye until it is almost over filled. They said it would be painful and then very uncomfortable because she will need to pee so badly and can not relieve herself for an hour while they take xrays to see if all her valves are working. After hearing this, I was VERY upset and demanded that they give her some kind of sedation so she is not freaking out screaming for an hour in terror! He said that was fine and he would call the hospital and handle it! He then prescribed a new antibiotic and then we left for vacation for a week. She finished the meds while we were out of town.
August 20th~ It was the Monday after we got back from vacation and I had my ultrasound for my gallbladder. By this time, I had worked myself into thinking my liver was shutting down on me and that was what the pain was. (The gallbladder sits right underneath the liver and is attached to it by a tube, yes that is my scientific word for it! LOL!) Knowing that Caylee had her tests the next day, we decided it would be best if Jon went to work because I really needed him the next day for her. I can handle what they are throwing at me, but I am a blubbering mess when it comes to my kids! So it was just me and my mom that day. I had the ultrasound done and luckily I had a great tech. She said with all that is going on in my life, she wasn't allowed to technically diagnose me but she pretty much told me she had found gallstones! So I was relieved! She said the dr would call me within 2 days to let me know.
August 21st~This was the day we were dreading for 2 weeks. The day we went to the hospital with Caylee and did the kidney ultrasound and the VCUG. Here are a couple of pics from that day
This is Caylee getting a ride to her first test, the kidney ultrasound
This is Caylee checking out the machine. The tech was very good with her and let her hold the "Magic Wand and everything, so she could see it wouldn't hurt her!
She was not too sure about this ultrasound stuff, but she didn't shed a tear! She had her blanket and Ariel to keep her company!
This is Caylee and Daddy playing with anything they could find before we had to take her in for the VCUG!
Let me start by saying, I prayed long and hard about this VCUG test! We called CHOC hospital to see if doing this test so quickly after only 1 UTI was overkill, they said no!! They do it everyday to 2 year olds! So, I was ok with it as long as she was getting the sedation. We walk into this room with a huge table and machine and are ready to hand her over. The radiologist starts showing me everything for the test, the catheter, the 2 bottles of dye and then proceeds to tell me how horrible it is going to be for her. I stayed strong. Then the head of the radiology department tells me that it is not St Jude's policy to sedate anyone her age!! So I said, "fine, I will call my Dr and he can tell you its ok to sedate her!" He refused, so, I then refused the test!! We scooped up Caylee and walked out! As we were leaving the 1st radiologist (the lady) said, "You are making the right choice, especially if this is only her first UTI!" I felt confident in my decision and still do! We went home and I was very relieved it was all over!
The next day, I get a call from Dr D's office saying I need to come in and go over the results of my ultrasound. We set it up for Thursday the 23rd. I ask the receptionist if they had found gallstones and she said yes. I said, "So, I will be having surgery soon?" she said, "I think so, but he will go over that at the appointment." I said, "The reason I am asking is because I am supposed to go back to chemo on Tuesday and I need to know whether to cancel it or not!" She said, "Oh! I would imagine that you are going to cancel it, but lets let Dr D handle that!"
August 23rd~ Jon and I went to Dr D's office and he let me know that they found gallstones. Then he said I will be doing the surgery because with Avastin, it would be really bad for me to need emergency surgery if i couldn't pass a gallstone or if my gallbladder got infected. So I figured my surgery would be around September 15th or so! He asked me when my last chemo was. I said this is my 3rd week off of it! He said, "WOW, AWESOME, Your surgery will be on Wednesday or Friday of next week!" My jaw hit the floor! I was not ready for that at all!!I was thinking the middle of September sometime! He gave me my surgery packet and we agreed on Friday the 31st because Wednesdays are early days at the school. Then he made my pre op blood work for Wednesday the 29th at 8:45 am! He asked if I had any questions and then left!
August 27~I had an appt with Dr Paneres just to touch base with everything and get him informed on the surgery and everything He actually surprised me as much as Dr D! He told me he wanted me back on chemo on the 11th of September! WHAT?? I THOUGHT IT WAS LIKE 6 WEEKS AFTER SURGERY!! I already planned a Disneyland trip and everything! but nope!! He wants me back on chemo 10 days after surgery! He said he will just not add avastin on! So I come back to the cancer center on the 10th with chemo on the 11th!! Still going to take that Disneyland trip on the 21st!
August 27th~. We get home from seeing Dr D and I get a phone call from Dr Kim saying Caylee needed to come in and get her report read from the Kidney ultrasound. He also said that she STILL had the UTI and when we came in, he was just going to get a clean specimen by using a catheter! I really wasn't too worried because I had tons of catheters in me while I was in the hospital and it was no big deal! So he said he wanted us in ASAP, he said that that day was not good because he was already booked. So I mentioned Tuesday.... Nope, he was out that day! So you guessed it he made the appointment for Wednesday the 29th at 10:15am, so I have just enough time to get to my appointment and jam home to pick her up for her appointment. I hang up the phone and start to cry.
God says he won't give you more that you can handle, let me tell you, I am reaching my point!! I call Jon and he calms me down! He tells me he will take a FMLA day and go with me to all my appointments. We really are struggling financially, we are behind a couple months on rent and don't even BOTHER looking at the medical bills as they come in! We are barely keeping our heads above water. I am sure a lot of you are saying, "Well, they can afford a vacation and a jam packed summer!" This is true, we scraped together enough money to do a lot of fun things this summer. BUT... Remember, I was told that I am terminal, whether God wants to take me for sure or heal me that is up to him. Right now, my kids deserve all the memories and fun they can get. They are at their boiling point also! They deserve to forget all this that is happening and just have fun like a normal child!!
August 29th~ So we jam to the Outpatient center for St Jude and we get there and we are the only ones there!! So I get my bracelet and they call me back. So the nurse comes in and puts a tourniquet on me and I ask, "Why don't you just use my port, its easier because I have horrible veins!" She told me that she would have to find a different nurse to do it, because she doesn't know how to access a port! So she finally found a vein after about 15 minutes of slapping me in different places (LOL) and then she got the needle in me and that was it!
Then we ran home and picked up Caylee! We headed off to her dr appt. I thought this was going to be a hard appointment, but I had no idea how hard! We get there and get called back and the head nurse, Darlene, said, "Oh! He wanted you guys to come in anyways?" I said, "What are you talking about?" She said, "Didn't the dr call you, we have no catheters right now!" Are you kidding me? Jon and I just looked at each other so annoyed with the whole day. So she said she would go talk to the dr and see what he wanted to do. She came back and the dr told her to go get a catheter from the hospital. So she ran and got one and we waited about 45 minutes in the room. She came back and took Caylee's vitals. Then, the dr came in and showed up the lab results proving she still had the UTI. He then set up for the catheter procedure. We gave Caylee my phone to play the games on it to hopefully get her zoned out where she wouldn't even get what was going on. As soon as the Dr wiped her with the beta dine, she started screaming. He was very calming and let her know he was only cleaning her, he told me she was not in any pain at all! Then he took out the catheter! It was HUGE!! Jon even made a comment that the Dr better never come at Jon with that thing!! He ignored Jon's comment and then he tried inserting the cath into Caylee, he tried and tried and it was a no go!! She was screaming and looking at us in terror! It was the most horrible 10 minutes of my life! So the Dr is totally flustered at this time and he pulls out and says, "OK! You're done! I can't get it! I said, "Well since she is totally clean down there, lets get a clean catch just with the cup right now!" He agreed it was a good idea and we did it! Right away the urine test came back that it was STILL a UTI. So we were prescribed another 14 days of antibiotics and she is being referred to a pediatric urologist through CHOC hospital! As we walked out of the office, I just started crying! It was way too much for me!! I just couldn't wait to get away from that place and get home. So now we are just waiting to hear back from him so we can get her into the specialist!
After we got home from her appointment, we started calling different counselors that the insurance gave us! The problem is, not 1 of them advertised that they were Christian!! So I finally found 1 counselor I REALLY think is a great fit for our family! The problem is, I don't think she is on the list that insurance gave us. We will be calling today and seeing if they will cover the sessions!
Tomorrow morning I have to be at the hospital at 9:50am! My surgery is at 11:50am! I should be done within 3 to 4 hours and then home bound! I really want to get home by the time the boys get home from school! Also, Jonny has a soccer tournament the next day and I REALLY don't want to miss it!
So that is it! You are all pretty much caught up! Please pray for Caylee! I need this to be over! I can NOT concentrate on myself with her being sick too! Pray we find a Christian counselor to help us through all of this. We are all at our breaking point and need someone who will give me Godly advice. So far all the grants we applied for denied us and the one that approved us (that was supposed to pay Caylee's preschool bill monthly) ran out of money and could only give us $100! It was a blessing! But we were expecting to have a $250 a month bill eliminated!! Also, pray for my surgery! I just want to be back on my feet as soon as possible! Remember to keep praying, the Lord is listening!!
God says he won't give you more that you can handle, let me tell you, I am reaching my point!! I call Jon and he calms me down! He tells me he will take a FMLA day and go with me to all my appointments. We really are struggling financially, we are behind a couple months on rent and don't even BOTHER looking at the medical bills as they come in! We are barely keeping our heads above water. I am sure a lot of you are saying, "Well, they can afford a vacation and a jam packed summer!" This is true, we scraped together enough money to do a lot of fun things this summer. BUT... Remember, I was told that I am terminal, whether God wants to take me for sure or heal me that is up to him. Right now, my kids deserve all the memories and fun they can get. They are at their boiling point also! They deserve to forget all this that is happening and just have fun like a normal child!!
August 29th~ So we jam to the Outpatient center for St Jude and we get there and we are the only ones there!! So I get my bracelet and they call me back. So the nurse comes in and puts a tourniquet on me and I ask, "Why don't you just use my port, its easier because I have horrible veins!" She told me that she would have to find a different nurse to do it, because she doesn't know how to access a port! So she finally found a vein after about 15 minutes of slapping me in different places (LOL) and then she got the needle in me and that was it!
Then we ran home and picked up Caylee! We headed off to her dr appt. I thought this was going to be a hard appointment, but I had no idea how hard! We get there and get called back and the head nurse, Darlene, said, "Oh! He wanted you guys to come in anyways?" I said, "What are you talking about?" She said, "Didn't the dr call you, we have no catheters right now!" Are you kidding me? Jon and I just looked at each other so annoyed with the whole day. So she said she would go talk to the dr and see what he wanted to do. She came back and the dr told her to go get a catheter from the hospital. So she ran and got one and we waited about 45 minutes in the room. She came back and took Caylee's vitals. Then, the dr came in and showed up the lab results proving she still had the UTI. He then set up for the catheter procedure. We gave Caylee my phone to play the games on it to hopefully get her zoned out where she wouldn't even get what was going on. As soon as the Dr wiped her with the beta dine, she started screaming. He was very calming and let her know he was only cleaning her, he told me she was not in any pain at all! Then he took out the catheter! It was HUGE!! Jon even made a comment that the Dr better never come at Jon with that thing!! He ignored Jon's comment and then he tried inserting the cath into Caylee, he tried and tried and it was a no go!! She was screaming and looking at us in terror! It was the most horrible 10 minutes of my life! So the Dr is totally flustered at this time and he pulls out and says, "OK! You're done! I can't get it! I said, "Well since she is totally clean down there, lets get a clean catch just with the cup right now!" He agreed it was a good idea and we did it! Right away the urine test came back that it was STILL a UTI. So we were prescribed another 14 days of antibiotics and she is being referred to a pediatric urologist through CHOC hospital! As we walked out of the office, I just started crying! It was way too much for me!! I just couldn't wait to get away from that place and get home. So now we are just waiting to hear back from him so we can get her into the specialist!
After we got home from her appointment, we started calling different counselors that the insurance gave us! The problem is, not 1 of them advertised that they were Christian!! So I finally found 1 counselor I REALLY think is a great fit for our family! The problem is, I don't think she is on the list that insurance gave us. We will be calling today and seeing if they will cover the sessions!
Tomorrow morning I have to be at the hospital at 9:50am! My surgery is at 11:50am! I should be done within 3 to 4 hours and then home bound! I really want to get home by the time the boys get home from school! Also, Jonny has a soccer tournament the next day and I REALLY don't want to miss it!
So that is it! You are all pretty much caught up! Please pray for Caylee! I need this to be over! I can NOT concentrate on myself with her being sick too! Pray we find a Christian counselor to help us through all of this. We are all at our breaking point and need someone who will give me Godly advice. So far all the grants we applied for denied us and the one that approved us (that was supposed to pay Caylee's preschool bill monthly) ran out of money and could only give us $100! It was a blessing! But we were expecting to have a $250 a month bill eliminated!! Also, pray for my surgery! I just want to be back on my feet as soon as possible! Remember to keep praying, the Lord is listening!!
Friday, August 3, 2012
Well, I got some more news to share! The boys are at the men's campout at church and I am sitting here trying to get Caylee to sleep! This child will only go to bed for her father! So I thought I would do an update!
About a week ago, I was at VBS and I started to get what I thought was another panic attack! Like the one on the way home from Vegas. My cousin, Shayla, told me she thought it sounded more like a gallbladder attack. So I went home and suffered for 7 hours straight. Had 2 more that weekend.
On Monday, I went to the dr for my regular 2 week check up for chemo. Told him about the gallbladder attacks and he referred me back to Dr D my surgeon.
I did another round of chemo with Avastin and everything was ok!
Today was my appt with Dr D! He said that he checked all my old CT scans and ultrasounds and I didn't have any gallstones at that time! But I have an ultrasound scheduled for the 20th after we get back from vacation. He said that it could be an ulcer, that the 2 problems mimic each other symptom wise. So if all comes back clear that I don't have gallstones, he will send me over to see my GI doctor to get an endoscopy to make sure I don't have any ulcers.
Please pray that the pain stays away! It was one of the worst pains I have ever been thru and I have had A LOT of pain!! Also, pray that they find something and can fix me quickly! Lastly, pray for my boys to come home safely and that I get some sleep with Caylee!! Thanks!!
About a week ago, I was at VBS and I started to get what I thought was another panic attack! Like the one on the way home from Vegas. My cousin, Shayla, told me she thought it sounded more like a gallbladder attack. So I went home and suffered for 7 hours straight. Had 2 more that weekend.
On Monday, I went to the dr for my regular 2 week check up for chemo. Told him about the gallbladder attacks and he referred me back to Dr D my surgeon.
I did another round of chemo with Avastin and everything was ok!
Today was my appt with Dr D! He said that he checked all my old CT scans and ultrasounds and I didn't have any gallstones at that time! But I have an ultrasound scheduled for the 20th after we get back from vacation. He said that it could be an ulcer, that the 2 problems mimic each other symptom wise. So if all comes back clear that I don't have gallstones, he will send me over to see my GI doctor to get an endoscopy to make sure I don't have any ulcers.
Please pray that the pain stays away! It was one of the worst pains I have ever been thru and I have had A LOT of pain!! Also, pray that they find something and can fix me quickly! Lastly, pray for my boys to come home safely and that I get some sleep with Caylee!! Thanks!!
Saturday, July 21, 2012
Checkin in and doing well!
It has been a while since I have posted, but things have been so busy around here! We went to Las Vegas for a couple days! It was a great get a way! We really needed a little escape. My parents went with us and we got suites at the Stratosphere! We went to see the pawn shop where they film the TLC show Pawn Stars, we visited a couple different hotels and we went down town and what a party that was!! On the way home from Vegas, I ended up having a really bad panic attack, so we didn't stop at Calico like we had planned on doing. But it was a GREAT trip!! This is a picture of me and Joey at the MGM Grand hotel!
We also had a great 4th of July! I told my oncologist I would not be doing my 5-FU (take home chemo) because it would on me for the 4th and I would not ruin my kids holiday! It was such a great day. I had chemo the day before and just prayed for God to get me thru that day! We started off at Jon's brothers house for a BBQ! I made a fruit platter and white chocolate strawberries before we left! It was such a perfect day! Much needed time with his brother Chris, sister in law Angie and niece and nephew, Jenna and Nathan!! They are expecting twin girls in October and we had a fun time trying to come up with names for them! Then we went to my cousin, Shayla's grandmother in law's house (Did you keep up? Her husband's grandmothers) We set off fireworks there and that was also a perfect time! I was EXTREMELY tired when we got home, but I did not get sick!!
Chris brought out his Legos from when he and Jon were little and the kids were busy building the whole time! Yes, Chris and Jon did play with Legos, no they did not fight over them! LOL!
Joey (8yrs), Caylee (2yrs) Jonny (10 yrs)
Aaron, Jonny, Isaiah, Chloe, Joey and Caylee
Well, you are almost caught up in all that we have been up to this summer! For those of you who don't know, I really like Tim McGraw! I have been to 3 of his concerts. Well my best friend, Krista asked me what I was doing on Saturday (July 14th) I said, "Nothing, why?" That in itself is a miracle that I had nothing to do that day! Well, she surprised me and got me a ticket to the Brothers in the Sun concert!! (Tim McGraw and Kenny Chesney) The sad thing is, I have been so out of it with being sick and busy, I didn't even know he was in concert again!!! IT WAS ONE OF THE BEST DAYS/NIGHTS OF MY LIFE!! I did NOT have cancer that day!! I was normal!! I got to be me again! It was an all girls day and I really needed it!! I can not stop thinking about that day! I was a little worried when I found out it was a 7 hour concert. But I made it through it! THANK YOU SO MUCH KRISTA AND TAWNYA!! I will never forget that day!! Here are some pics from that day!
Melissa, Tawnya, Krista and Christianne (me)
Mr. Tim McGraw!!!!! :)
Kenny Chesney
OK... Now we have the medical update. I will make this quick because I just wanted to check in and it is late and I have to help decorate the church for VBS in the morning. Things have been good on the cancer front. My numbers have been steadily dropping and I started Avastin this past week. I did not seem to have any side effects from it thankfully. They said I have about a 50% chance that it will do anything. But with God on my side, its 100%! I tried to put off the Avastin until after we get back from vacation, but it was a no go! I have been feeling really good and I am looking forward to finishing the summer with VBS and vacation. I talked to the dr about my panic attack and let him know that I need to be on something to help with the anxiety. He did give me Xanax, but he told me he also wanted me to go to a psychologist.... YA! LET ME JUST PENCIL THAT IN ON TOP OF EVERYTHING ELSE!!
I have a couple of prayer requests. Our church's VBS is this coming week and we need prayer that everything will go off without a hitch. Also, Jonny, is going to summer camp for a week this coming week. Just pray he stays safe and comes home in one piece. We also applied for some grants to help us financially! We are in dire need that these come through!! Our medical bills are through the roof and there is one grant we are applying for this week that will pay for our child care for Caylee if we get approved!
Thank you to everyone who is still here reading this! LOL! This is why I have not been on here this summer too much, I have been too busy making memories!! God bless you all and thank you for praying for me and my family!!
At the end of the month of June, I threw my cousin, Shayla and her son, Caleb a baby shower!! I had a lot of help thankfully! It was such a special time! I have to show you the cake and some of the decorations, it was so cute!! The theme was Rock Star Monkey. (That is the theme of the nursery also)
We also had a great 4th of July! I told my oncologist I would not be doing my 5-FU (take home chemo) because it would on me for the 4th and I would not ruin my kids holiday! It was such a great day. I had chemo the day before and just prayed for God to get me thru that day! We started off at Jon's brothers house for a BBQ! I made a fruit platter and white chocolate strawberries before we left! It was such a perfect day! Much needed time with his brother Chris, sister in law Angie and niece and nephew, Jenna and Nathan!! They are expecting twin girls in October and we had a fun time trying to come up with names for them! Then we went to my cousin, Shayla's grandmother in law's house (Did you keep up? Her husband's grandmothers) We set off fireworks there and that was also a perfect time! I was EXTREMELY tired when we got home, but I did not get sick!!
Well, you are almost caught up in all that we have been up to this summer! For those of you who don't know, I really like Tim McGraw! I have been to 3 of his concerts. Well my best friend, Krista asked me what I was doing on Saturday (July 14th) I said, "Nothing, why?" That in itself is a miracle that I had nothing to do that day! Well, she surprised me and got me a ticket to the Brothers in the Sun concert!! (Tim McGraw and Kenny Chesney) The sad thing is, I have been so out of it with being sick and busy, I didn't even know he was in concert again!!! IT WAS ONE OF THE BEST DAYS/NIGHTS OF MY LIFE!! I did NOT have cancer that day!! I was normal!! I got to be me again! It was an all girls day and I really needed it!! I can not stop thinking about that day! I was a little worried when I found out it was a 7 hour concert. But I made it through it! THANK YOU SO MUCH KRISTA AND TAWNYA!! I will never forget that day!! Here are some pics from that day!
Mr. Tim McGraw!!!!! :)
Kenny Chesney
OK... Now we have the medical update. I will make this quick because I just wanted to check in and it is late and I have to help decorate the church for VBS in the morning. Things have been good on the cancer front. My numbers have been steadily dropping and I started Avastin this past week. I did not seem to have any side effects from it thankfully. They said I have about a 50% chance that it will do anything. But with God on my side, its 100%! I tried to put off the Avastin until after we get back from vacation, but it was a no go! I have been feeling really good and I am looking forward to finishing the summer with VBS and vacation. I talked to the dr about my panic attack and let him know that I need to be on something to help with the anxiety. He did give me Xanax, but he told me he also wanted me to go to a psychologist.... YA! LET ME JUST PENCIL THAT IN ON TOP OF EVERYTHING ELSE!!
I have a couple of prayer requests. Our church's VBS is this coming week and we need prayer that everything will go off without a hitch. Also, Jonny, is going to summer camp for a week this coming week. Just pray he stays safe and comes home in one piece. We also applied for some grants to help us financially! We are in dire need that these come through!! Our medical bills are through the roof and there is one grant we are applying for this week that will pay for our child care for Caylee if we get approved!
Thank you to everyone who is still here reading this! LOL! This is why I have not been on here this summer too much, I have been too busy making memories!! God bless you all and thank you for praying for me and my family!!
Tuesday, June 12, 2012
Long time no post!!!
Sorry it has taken me so long to update! This round of chemo has really knocked me on my behind!! I do NOT know what it is, but today was the first full day without nausea! So, let me get started with the results from the CT Scan I had!
Monday June 4th~ I had my regular doctor appointment in the morning. I tried all weekend to not think about the results because I have no control of the outcome, only God has that power! I tried to focus on Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own." If I can just live that verse, my life would be SO much less stressful! I spend more time worrying that I would like to admit!! Anyways, we went in to see the dr with Jon and Susie. Last time I had mentioned to him that I would like to skip the 5-FU (take home chemo) on the week of 4th of July and I wanted to take a week off in August to go to the lake without worrying about side effects from the chemo ruining our annual week at Lake Mohave. His response was that we had to wait to see what the results of the scan were. So, we go in and the dr is talking to me about everything BUT the CT Scan results. The normal questions about the side effects from the last chemo, I honestly can't remember the rest. What I do remember is thinking, "WOW! This must be BAD news, he is totally dancing around giving me the results." Finally I asked him about the results and he tells me that they were great!! There was growth, which we totally expected, but it was manageable. I was bummed that the cancer in my lungs grew for the first time, but he said he wasn't worried at all. I had mentioned that today marked my year of finding out about my cancer and he was shocked. He said that I was doing really well and he was pleased with where we were at this time. Susie then brought up going to USC to participate in their clinical trials, and for the first time his response was so upbeat (totally not his normal reaction) He said, "We are not there yet!!" He said that right now we are on a course that is working and we are going to continue on this road for a while. SOUNDS LIKE A PLAN TO ME!! I am still debating the whole Avastin thing, but probably going to go for it. He told me I had about a 5% chance of bowel rupture and having the bag again. I also have asked 3 chemo nurses, 2 were all for it and 1 said if I didn't want a bag for sure again, don't do it! I also asked our former associate pastors wife who is an Oncology PA and she said she would do it! That Avastin has prolonged some of her patients lives by YEARS! So I may be starting that drug along with my chemo this next week. We are so happy and thankful to God for the outcome of this past surgery and CT scan!! THANK YOU JESUS!!!
Tuesday June 5th~ Chemo..... again! Susie took me this time. I just have nothing good to say about chemo! (Other than it, along with God's power, is healing me) I just need to be honest, I just can make myself physically sick by just thinking about it. (I am not the only one, they actually have a name for it and said everyone gets it) So we were there for 4 hours and thankfully, NO ALLERGIC REACTION!! So Susie drives me home and she and my mom both say that I look better than I usually do. The weird thing is, it was the WORST I have ever felt after chemo ever! I usually don't throw up from chemo, but I did that night! My legs felt a million pounds each. All I could do was lay in bed, feeling like death could come snatch me at anytime. It was HORRIBLE!!
So, that is it I think! I have been sick on and off until today. I am feeling a little yucky right now, but I am sure it is because I was just thinking/writing about my chemo. Plus I haven't been sleeping well and it is almost 2 in the morning as I am writing this. I better go to bed!! Keep praying, God is listening and working his miracles on me!!
Monday June 4th~ I had my regular doctor appointment in the morning. I tried all weekend to not think about the results because I have no control of the outcome, only God has that power! I tried to focus on Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own." If I can just live that verse, my life would be SO much less stressful! I spend more time worrying that I would like to admit!! Anyways, we went in to see the dr with Jon and Susie. Last time I had mentioned to him that I would like to skip the 5-FU (take home chemo) on the week of 4th of July and I wanted to take a week off in August to go to the lake without worrying about side effects from the chemo ruining our annual week at Lake Mohave. His response was that we had to wait to see what the results of the scan were. So, we go in and the dr is talking to me about everything BUT the CT Scan results. The normal questions about the side effects from the last chemo, I honestly can't remember the rest. What I do remember is thinking, "WOW! This must be BAD news, he is totally dancing around giving me the results." Finally I asked him about the results and he tells me that they were great!! There was growth, which we totally expected, but it was manageable. I was bummed that the cancer in my lungs grew for the first time, but he said he wasn't worried at all. I had mentioned that today marked my year of finding out about my cancer and he was shocked. He said that I was doing really well and he was pleased with where we were at this time. Susie then brought up going to USC to participate in their clinical trials, and for the first time his response was so upbeat (totally not his normal reaction) He said, "We are not there yet!!" He said that right now we are on a course that is working and we are going to continue on this road for a while. SOUNDS LIKE A PLAN TO ME!! I am still debating the whole Avastin thing, but probably going to go for it. He told me I had about a 5% chance of bowel rupture and having the bag again. I also have asked 3 chemo nurses, 2 were all for it and 1 said if I didn't want a bag for sure again, don't do it! I also asked our former associate pastors wife who is an Oncology PA and she said she would do it! That Avastin has prolonged some of her patients lives by YEARS! So I may be starting that drug along with my chemo this next week. We are so happy and thankful to God for the outcome of this past surgery and CT scan!! THANK YOU JESUS!!!
Tuesday June 5th~ Chemo..... again! Susie took me this time. I just have nothing good to say about chemo! (Other than it, along with God's power, is healing me) I just need to be honest, I just can make myself physically sick by just thinking about it. (I am not the only one, they actually have a name for it and said everyone gets it) So we were there for 4 hours and thankfully, NO ALLERGIC REACTION!! So Susie drives me home and she and my mom both say that I look better than I usually do. The weird thing is, it was the WORST I have ever felt after chemo ever! I usually don't throw up from chemo, but I did that night! My legs felt a million pounds each. All I could do was lay in bed, feeling like death could come snatch me at anytime. It was HORRIBLE!!
So, that is it I think! I have been sick on and off until today. I am feeling a little yucky right now, but I am sure it is because I was just thinking/writing about my chemo. Plus I haven't been sleeping well and it is almost 2 in the morning as I am writing this. I better go to bed!! Keep praying, God is listening and working his miracles on me!!
Wednesday, May 23, 2012
Kids Therapy
On Tuesday night the boys attended the group therapy through Kids Konnected! They were the only kids there besides the youth leaders. The youth leaders range from 16 years old to 21 years old. The boys loved it!! They said they talked a lot. Because of confidentiality reasons, Jon couldn't be in the room with them. But I think that helped them open up more. They were so surprised and I think comforted that all the youth leaders either had a parent with cancer or a parent who died from cancer. They have never met anyone in their situation.
When they got home, they had made drawings and put stickers all over them that said, "God loves you!" or "I love Jesus"!! That comforted me so much! They can't wait to go back! I am so happy!
Thank you for praying with me and Jon over this situation. They mean more to me than anything I am going thru! I will do anything for the kids to have as normal life as possible! So please keep praying for them!! THANKS!!
When they got home, they had made drawings and put stickers all over them that said, "God loves you!" or "I love Jesus"!! That comforted me so much! They can't wait to go back! I am so happy!
Thank you for praying with me and Jon over this situation. They mean more to me than anything I am going thru! I will do anything for the kids to have as normal life as possible! So please keep praying for them!! THANKS!!
IT'S ONLY WEDNESDAY????
It has been a long week and it is barely half over! I am praying for the rest of the week to fly by! So much has happened already.
Monday, May 21st- I had an appointment with a dermatologist. Susie took me to my appointment! We have not hung out together since the hospital, way too long!! Anyways, I have had a rash under my left arm that has been there for months. I got an ointment for that. Then I was diagnosed with hand eczema! NICE!! Got another cream for that. Finally I showed the dermatologist my Stoma (place where the colostomy bag connected to my body) because I have had a rash from the appliance for MONTHS and it still hasn't cleared, even with the bag being gone for over a month! So the dr told me the eczema cream will get rid of that too.
Tuesday, May 22nd-I went back to my oncologist, Dr Panares. I have to admit, I have been pretty upset with him. He has not contacted me, asked about me and he didn't even bother to cross the street to check on me while I was in the hospital for 5 days. The kicker is, Jon even ran into him while we were in the hospital and told him what room I was in and he said he would stop by and he never did. What can you do I guess. Susie picked me up that morning, I MADE Jon go to work!! He didn't need to miss anymore work. He really tried to go, even tried staying home until I left trying to change my mind, but I told him I would be fine.
We got to the cancer center and I did my blood work. Then we waited for the nurse to call me back. We went back and they took my vitals and everything was good. But even though I am on blood pressure pills, my BP is never normal! Yesterday was not different. It was 156/90! (This info is important for later in the story) So finally after 3 months, I see Dr Panares. He was SHOCKED to see how good I looked! He just kept repeating himself that my quality of life is so good right now. He said that he got my blood work back and my numbers looked great. He said he didn't run my tumor marker numbers but he will call the lab and have them run the numbers. So then he started saying that we needed to "get back on the horse!" So, I told him that I have my summer planned and I wanted to start chemo TOMORROW!!! Again, he was shocked! He said he had to call and check to see if they could squeeze me in that quickly.
Susie then brought up the new med that he had been bringing up before the surgery that he wanted to start me on, Avastin. He said that he didn't want to start me on it yet because of the side effects. I have to be completely healed from the surgery because Avastin can cause your bowels to rupture. He was concerned because he said with my history of my bowel already rupturing, he was a little nervous to start it. It also causes bleeding. I am assuming like a blood thinner does. It also causes high blood pressure!! Great so I have 2 major side effects to worry about. So he told me that I had to call my primary care physician and get better BP meds.
He also said that I needed to have another CT Scan! He said we needed a new baseline for the tumors because if we wait and have the scan after 8 weeks of chemo, then we might believe the tumors are growing and the chemo isn't working, but in fact it might be working! For instance if a tumor has gone from 2cm to 3.5 cm and we didn't have that scan. When we go to do the scan in 8 weeks after chemo that tumor is 3 cm, we will think that they are growing instead of shrinking. So that was scheduled for next Wednesday at 11:30am. Please pray that the cancer hasn't grown too much if at all!
He excused himself to go check to see if they could fit me into chemo tomorrow. He came back and said I was scheduled for 7:30am! He mentioned they were pretty busy because of the 3 day holiday coming up!
So, the more I thought about it, the more scared I got to start Avastin. Do the benefits really outweigh the risks? Let me tell you, I WILL DO ANYTHING NOT TO HAVE A COLOSTOMY BAG AGAIN!! So I decide to... dun, dun, dun GOOGLE IT!! LOL! Wikipedia said that on average it only prolongs a colon cancer patients life by 4.7 MONTHS!!! Not years, months!! It also said it was linked to not only bowel rupture, but stomach and nasal septum ruptures also. But my sister googled it and read that a man has been on it and it has prolonged his life for over 4 YEARS and counting!! So please pray about this decision with me and Jon! Its really a big one. We are also seeking out opinions from different professionals for their opinions. So far I asked 2 chemo nurses about it today at chemo. The first nurse said it was her "educated guess" that since I don't have cancer in my colon that there would be no reason for my bowels to rupture. She said that the way Avastin works is by stopping my body from creating new blood vessels. So therefore it would "starve" the tumors and they will stop growing and hopefully shrink them. She said she has seen it prolong patients lives for years! Then the next nurse was MUCH more leery! She said, "just as soon as you feel the pain of the ruptured bowel, go straight to the hospital because you could bleed out quickly on it!" UGH!!! She did remind me not to worry about it too much right now, that we have over a month to decide and with prayer, we will have an answer. So, pretty much, I was back to square one! After chemo, we (Jon and I) decided to call Dr D (my surgeon) and ask his opinion. Also, if we do decide to try this, I want a guarantee that if something was to go wrong, that no matter if he was not on call or not, he would come in to do the surgery!! He was out of the office, but he was out of the office and will call us tomorrow. Also, Avastin is a very expensive treatment! $100,000.00 for a year's worth of treatment and the computer mentioned a lot of insurances don't carry it. So I prayed and just said, "If I am for sure not supposed to do this treatment, just have my insurance deny it!!" So Jon called Cigna and they said they do cover it if you qualify! There are 13 requirements for it. I AM JUST PUTTING THIS IN GOD'S HANDS!! I am praying for a loud and clear answer!
Wednesday May 23rd-My sister spent a restless night in my boys room, on the bottom bunk, on the worst mattress in the whole house, just to take me to chemo!! We left at 7:25am, yep, we were late! But believe me, the chemo nurses are used to that! I was nervous! As we were going up the elevator, a man and what we believe to be his son we in the elevator with us. The dad was a little older than me, good looking, in shape and was carrying a back pack (a tell tale sign he was going to chemo) His son was a teenager. Athletic looking and I thought to myself, "What a good kid, hanging with his dad and taking him to chemo." Then I looked at the dad wondering what kind of chemo it was and that he looked so good! We get into the infusion center waiting room and I mention to Betsy (my sister) that he looked so good and strong for being on chemo and having cancer. She agreed and said she was thinking the same thing. A few minutes go by and the boy looks at his dad and says, "Don't forget mom wants you to keep an eye on the injection site and write down any side effects I have!" Then we realize the BOY HAD CANCER!! So sad! Then they called me back after waiting about 20 minutes and set me up in a chair! Not my private room like normal, but probably because they had to pencil me in! LOL! Like always I slept the entire time, while my sister watched me like a hawk (nurses orders) to make sure I didn't have a reaction to the chemo. We got home at noon and I started feeling horrible. I ate knowing I wouldn't be able to eat dinner tonight and I stayed up as long as I could and they got in bed. I have been here ever since. My sister stayed and helped my mom with the kids until she had to go to school at 5pm. She hasn't been with her kids for 2 days just to help me out!
So I haven't felt this bad in a long time. I think, I don't quite remember, but I think tomorrow will be even worse. But by Sunday I think I will be feeling better!
I have another PRAISE REPORT!! Your prayers worked AGAIN!!! My friend Tyler who was supposed to have that big surgery and a colostomy bag put in, had his colonoscopy and endoscopy! It turns out he is going to be OK!! I can't remember the details, but as of right now he is not having the surgery and they are just keeping an eye on things! PRAISE GOD!!
But I have a prayer request for a family I just found out about today. There is a man named, Zack Malone. He looks younger than I am, he is married and has a 2 year old son. He was diagnosed with Stage 4 colon cancer a little over 2 years ago. He was told last week that his liver is shutting down, they sent him home and put him on hospice. There is a fundraiser on Facebook going on. Proceeds from a Scentsy party is going straight to the family for medical bills, house bills, food, etc... PLEASE TAKE A LOOK AT THE PRODUCTS!! Any little bit helps! Plus, who doesn't like Scentsy? If you can not help out financially, please keep this family in prayer! He just accepted the Lord recently! THANK YOU JESUS!! Here is the link to the fundraiser. https://
Well, I am wrapping this up!! Please continue to pray! God is really listening! He answered our prayers for the kids therapy, he answered our prayers for Tyler and I am sure he will answer our prayer for the Avastin situation!!
I WANT TO SAY THANK YOU TO SOME PEOPLE WHO HAVE REALLY BEEN THERE FOR ME RECENTLY!!
Susie, my taxi and my brain in the dr office!! Thanks so much for everything you have done for me and my family the past year!!! I HONESTLY COULD NOT HAVE DONE IT WITHOUT YOU!! I love you so much!!
Betsy~ Thank you for being there for me emotionally and all your help with the kids and taking me to chemo. I know you have so much going on in your own life, but there isn't a day that goes by that you don't check on me and make sure I am ok! I love you and couldn't ask for a better sister!!
My parents~ Thank you for being mom and dad to my kids when we can't!! Taking and picking up the kids for school, soccer, preschool, back to school nights, parent/teacher conferences, the kids workshops every weekend, church and so much more!! We can never repay you! I am sorry for what I am putting you both thru! You don't deserve this. First we take over your house and now I get sick on top of it, its not right and I am sorry!!
Nanny, David and Brian~ It means so much to me that you visit me so much! Also for researching natural ways to keep me healthy!! VEGGIES AND COLLARD GREENS! See!! I remember! Nanny I really appreciate your texts, cards, having your best friend make my chemo purses and taking me to get my pump out! I love you all very much!!
Dave Durniok~ Thank you for your friendship this year! For all the encouragement and reminding me God is holding me through this storm! Thank for praying with me and making sure I realize I can beat this! Reminding me that with God ALL things are possible!! I have grown so much closer to Him with your help and guidance! We need to get together again!
My church family~ Thank you for the prayers, meals, cards, phone calls, visits and friendships. I love my church and everyone in it so much!
Krista~My endless love! Thank you for the pep talk the other night! One of these times I will be able to hang out with you without crying! I just can't imagine me without you! I love you so much! Just quit telling me the ending of things or I will have to punch you!!LOL!!
Jon~I can't even begin to know where to start with you! You have been so patient with me and loved me thru the whole year! You have been my best friend, nurse, shoulder to cry on! You have held my hair while I have been sick, bathed me when I can't get out of bed, changed my bag EVERY TIME, walked with me, taken care of the kids, gotten up in the middle of the night just to make sure I had my pills on time, dressed me when I was too weak, been to most every dr appointment and treated me like a normal person the entire time. THANK YOU and I know, no one could ever love me like you do!! I love you with my entire being and can't imagine being any happier than I am with you!
Thank you to everyone else! Please don't be offended if I forgot anyone! I am not at my best right now!! Please know I appreciate everything that has been done for us over the past year! We couldn't have made it without every ones help and prayers!! Thanks again!!
Monday, May 21st- I had an appointment with a dermatologist. Susie took me to my appointment! We have not hung out together since the hospital, way too long!! Anyways, I have had a rash under my left arm that has been there for months. I got an ointment for that. Then I was diagnosed with hand eczema! NICE!! Got another cream for that. Finally I showed the dermatologist my Stoma (place where the colostomy bag connected to my body) because I have had a rash from the appliance for MONTHS and it still hasn't cleared, even with the bag being gone for over a month! So the dr told me the eczema cream will get rid of that too.
Tuesday, May 22nd-I went back to my oncologist, Dr Panares. I have to admit, I have been pretty upset with him. He has not contacted me, asked about me and he didn't even bother to cross the street to check on me while I was in the hospital for 5 days. The kicker is, Jon even ran into him while we were in the hospital and told him what room I was in and he said he would stop by and he never did. What can you do I guess. Susie picked me up that morning, I MADE Jon go to work!! He didn't need to miss anymore work. He really tried to go, even tried staying home until I left trying to change my mind, but I told him I would be fine.
We got to the cancer center and I did my blood work. Then we waited for the nurse to call me back. We went back and they took my vitals and everything was good. But even though I am on blood pressure pills, my BP is never normal! Yesterday was not different. It was 156/90! (This info is important for later in the story) So finally after 3 months, I see Dr Panares. He was SHOCKED to see how good I looked! He just kept repeating himself that my quality of life is so good right now. He said that he got my blood work back and my numbers looked great. He said he didn't run my tumor marker numbers but he will call the lab and have them run the numbers. So then he started saying that we needed to "get back on the horse!" So, I told him that I have my summer planned and I wanted to start chemo TOMORROW!!! Again, he was shocked! He said he had to call and check to see if they could squeeze me in that quickly.
Susie then brought up the new med that he had been bringing up before the surgery that he wanted to start me on, Avastin. He said that he didn't want to start me on it yet because of the side effects. I have to be completely healed from the surgery because Avastin can cause your bowels to rupture. He was concerned because he said with my history of my bowel already rupturing, he was a little nervous to start it. It also causes bleeding. I am assuming like a blood thinner does. It also causes high blood pressure!! Great so I have 2 major side effects to worry about. So he told me that I had to call my primary care physician and get better BP meds.
He also said that I needed to have another CT Scan! He said we needed a new baseline for the tumors because if we wait and have the scan after 8 weeks of chemo, then we might believe the tumors are growing and the chemo isn't working, but in fact it might be working! For instance if a tumor has gone from 2cm to 3.5 cm and we didn't have that scan. When we go to do the scan in 8 weeks after chemo that tumor is 3 cm, we will think that they are growing instead of shrinking. So that was scheduled for next Wednesday at 11:30am. Please pray that the cancer hasn't grown too much if at all!
He excused himself to go check to see if they could fit me into chemo tomorrow. He came back and said I was scheduled for 7:30am! He mentioned they were pretty busy because of the 3 day holiday coming up!
So, the more I thought about it, the more scared I got to start Avastin. Do the benefits really outweigh the risks? Let me tell you, I WILL DO ANYTHING NOT TO HAVE A COLOSTOMY BAG AGAIN!! So I decide to... dun, dun, dun GOOGLE IT!! LOL! Wikipedia said that on average it only prolongs a colon cancer patients life by 4.7 MONTHS!!! Not years, months!! It also said it was linked to not only bowel rupture, but stomach and nasal septum ruptures also. But my sister googled it and read that a man has been on it and it has prolonged his life for over 4 YEARS and counting!! So please pray about this decision with me and Jon! Its really a big one. We are also seeking out opinions from different professionals for their opinions. So far I asked 2 chemo nurses about it today at chemo. The first nurse said it was her "educated guess" that since I don't have cancer in my colon that there would be no reason for my bowels to rupture. She said that the way Avastin works is by stopping my body from creating new blood vessels. So therefore it would "starve" the tumors and they will stop growing and hopefully shrink them. She said she has seen it prolong patients lives for years! Then the next nurse was MUCH more leery! She said, "just as soon as you feel the pain of the ruptured bowel, go straight to the hospital because you could bleed out quickly on it!" UGH!!! She did remind me not to worry about it too much right now, that we have over a month to decide and with prayer, we will have an answer. So, pretty much, I was back to square one! After chemo, we (Jon and I) decided to call Dr D (my surgeon) and ask his opinion. Also, if we do decide to try this, I want a guarantee that if something was to go wrong, that no matter if he was not on call or not, he would come in to do the surgery!! He was out of the office, but he was out of the office and will call us tomorrow. Also, Avastin is a very expensive treatment! $100,000.00 for a year's worth of treatment and the computer mentioned a lot of insurances don't carry it. So I prayed and just said, "If I am for sure not supposed to do this treatment, just have my insurance deny it!!" So Jon called Cigna and they said they do cover it if you qualify! There are 13 requirements for it. I AM JUST PUTTING THIS IN GOD'S HANDS!! I am praying for a loud and clear answer!
Wednesday May 23rd-My sister spent a restless night in my boys room, on the bottom bunk, on the worst mattress in the whole house, just to take me to chemo!! We left at 7:25am, yep, we were late! But believe me, the chemo nurses are used to that! I was nervous! As we were going up the elevator, a man and what we believe to be his son we in the elevator with us. The dad was a little older than me, good looking, in shape and was carrying a back pack (a tell tale sign he was going to chemo) His son was a teenager. Athletic looking and I thought to myself, "What a good kid, hanging with his dad and taking him to chemo." Then I looked at the dad wondering what kind of chemo it was and that he looked so good! We get into the infusion center waiting room and I mention to Betsy (my sister) that he looked so good and strong for being on chemo and having cancer. She agreed and said she was thinking the same thing. A few minutes go by and the boy looks at his dad and says, "Don't forget mom wants you to keep an eye on the injection site and write down any side effects I have!" Then we realize the BOY HAD CANCER!! So sad! Then they called me back after waiting about 20 minutes and set me up in a chair! Not my private room like normal, but probably because they had to pencil me in! LOL! Like always I slept the entire time, while my sister watched me like a hawk (nurses orders) to make sure I didn't have a reaction to the chemo. We got home at noon and I started feeling horrible. I ate knowing I wouldn't be able to eat dinner tonight and I stayed up as long as I could and they got in bed. I have been here ever since. My sister stayed and helped my mom with the kids until she had to go to school at 5pm. She hasn't been with her kids for 2 days just to help me out!
So I haven't felt this bad in a long time. I think, I don't quite remember, but I think tomorrow will be even worse. But by Sunday I think I will be feeling better!
I have another PRAISE REPORT!! Your prayers worked AGAIN!!! My friend Tyler who was supposed to have that big surgery and a colostomy bag put in, had his colonoscopy and endoscopy! It turns out he is going to be OK!! I can't remember the details, but as of right now he is not having the surgery and they are just keeping an eye on things! PRAISE GOD!!
But I have a prayer request for a family I just found out about today. There is a man named, Zack Malone. He looks younger than I am, he is married and has a 2 year old son. He was diagnosed with Stage 4 colon cancer a little over 2 years ago. He was told last week that his liver is shutting down, they sent him home and put him on hospice. There is a fundraiser on Facebook going on. Proceeds from a Scentsy party is going straight to the family for medical bills, house bills, food, etc... PLEASE TAKE A LOOK AT THE PRODUCTS!! Any little bit helps! Plus, who doesn't like Scentsy? If you can not help out financially, please keep this family in prayer! He just accepted the Lord recently! THANK YOU JESUS!! Here is the link to the fundraiser. https://
Well, I am wrapping this up!! Please continue to pray! God is really listening! He answered our prayers for the kids therapy, he answered our prayers for Tyler and I am sure he will answer our prayer for the Avastin situation!!
I WANT TO SAY THANK YOU TO SOME PEOPLE WHO HAVE REALLY BEEN THERE FOR ME RECENTLY!!
Susie, my taxi and my brain in the dr office!! Thanks so much for everything you have done for me and my family the past year!!! I HONESTLY COULD NOT HAVE DONE IT WITHOUT YOU!! I love you so much!!
Betsy~ Thank you for being there for me emotionally and all your help with the kids and taking me to chemo. I know you have so much going on in your own life, but there isn't a day that goes by that you don't check on me and make sure I am ok! I love you and couldn't ask for a better sister!!
My parents~ Thank you for being mom and dad to my kids when we can't!! Taking and picking up the kids for school, soccer, preschool, back to school nights, parent/teacher conferences, the kids workshops every weekend, church and so much more!! We can never repay you! I am sorry for what I am putting you both thru! You don't deserve this. First we take over your house and now I get sick on top of it, its not right and I am sorry!!
Nanny, David and Brian~ It means so much to me that you visit me so much! Also for researching natural ways to keep me healthy!! VEGGIES AND COLLARD GREENS! See!! I remember! Nanny I really appreciate your texts, cards, having your best friend make my chemo purses and taking me to get my pump out! I love you all very much!!
Dave Durniok~ Thank you for your friendship this year! For all the encouragement and reminding me God is holding me through this storm! Thank for praying with me and making sure I realize I can beat this! Reminding me that with God ALL things are possible!! I have grown so much closer to Him with your help and guidance! We need to get together again!
My church family~ Thank you for the prayers, meals, cards, phone calls, visits and friendships. I love my church and everyone in it so much!
Krista~My endless love! Thank you for the pep talk the other night! One of these times I will be able to hang out with you without crying! I just can't imagine me without you! I love you so much! Just quit telling me the ending of things or I will have to punch you!!LOL!!
Jon~I can't even begin to know where to start with you! You have been so patient with me and loved me thru the whole year! You have been my best friend, nurse, shoulder to cry on! You have held my hair while I have been sick, bathed me when I can't get out of bed, changed my bag EVERY TIME, walked with me, taken care of the kids, gotten up in the middle of the night just to make sure I had my pills on time, dressed me when I was too weak, been to most every dr appointment and treated me like a normal person the entire time. THANK YOU and I know, no one could ever love me like you do!! I love you with my entire being and can't imagine being any happier than I am with you!
Thank you to everyone else! Please don't be offended if I forgot anyone! I am not at my best right now!! Please know I appreciate everything that has been done for us over the past year! We couldn't have made it without every ones help and prayers!! Thanks again!!
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