Thank you to everyone who is praying for me! I have said it before and I will say it again, HE IS LISTENING! So, the last CT scan said that there was a little bit of growth and my dr wanted me to wait 6 weeks and have another CT and we would decide from there what to do! I was SO SURE, this was the beginning of the end! I had myself prepared for the absolute worst! The cancer was growing and I would be taken off the chemo and I would start on a new medicine that was not a chemo, but would stop or slow the growth of the cancer! I was at peace, we went in to hear the results and the dr said, "Well, you just don't stop surprising me! The chemo seems to be working and we are going to continue with how we are going and do your next CT scan after the new year!" I was stunned!! I was so sure that it was growing that I actually didn't know how to feel! I know for some of you that sounds weird, but I really never in a million years thought this would be the result! He told me that not only did the chemo stop the growth, but my cancer numbers have dropped even more! My head was spinning! Then I remembered, that meant more chemo. I am so grateful for the time God is giving me, but it doesn't make me like chemo anymore than I ever have! I am so happy!! This means I get to enjoy my holidays!! I don't need to stress that I may not see Christmas this year! I know I can't be completely sure that something won't happen, but my chances of being here for our trip to the cabins for Christmas is pretty good! I can focus on the short future, instead of stressing about the here and now only! I will be able to enjoy watching Jonny turn 13 years old and Caylee turning 5 years old! This is a HUGE thing for me! When I first got diagnosed, I remember praying, "Lord, let me see Jonny turn 13 and Caylee turn 5, I remember my 5th birthday, she will remember me!" HE LISTENED TO ME!! This is such a miracle!
So, when I say, "Keep pray, He is listening!!" HE REALLY IS LISTENING!! Praise GOD for that!!
Monday, October 20, 2014
Tuesday, September 30, 2014
Where I am now...
I had better jump on here before things really start moving quickly, birthdays, holidays and yes... my cancer! I will just let you all in on where I am at now in my journey. I had a CT Scan a few weeks ago and even tho my cea (cancer) numbers were down 100 points, the ct proved my cancer was indeed still growing! In hopes that the cancer just hadn't caught up to the point drop, my dr decided to give it another try and wait another 6 weeks and do a new CT Scan. So I am in the wait period. I will go over what our next steps are, good and bad. So, if the scan shows that my cancer just hadn't caught up to the number drop and it is either stable or in fact shrinking, we will keep going the way we have been. Chemo every 3 weeks... 6 hours of infusion followed by 2 weeks of 4 pills 2 times a day and then a week off. Then we will rescan every 2 months to keep on top of it! If the cancer is still growing despite the number drop, I will be taken off chemo completely! From there, I will be put on a new medicine that is not technically a chemo. It comes in pill form and you take it for 3 weeks with a one week break! This medicine works about 50% of the time and what it does is it shuts the blood vessels off that feed the tumors. So it stops them from growing! Unlike chemo that is supposed to shrink and kill the chemo! So the chemo is not going away, this is just buying us a little more time! If that decides not to work, he will recommend that we try clinical trials! My first initial thought about clinical trials is to run as fast as I can away from that at all costs! The 3 other cancer patients who were in my condition, that went to clinical trials all passed away within 6 weeks. So my first thought was to battle the cancer myself because I have been told over and over I have a slow growing cancer. But now as I sit here, starring down the barrel of what could be, which path will I take, I realize you can't really "plan" your life. You just don't know how you are going to react to a situation until it is slapping you in the face!
This brings me to my next topic, WHAT SYMPTOMS OR HOW AM I DOING PHYSICALLY! I have noticed a lot of changes in me. I get sleepy SUPER quick!! I went to a birthday party for my 6 year old niece and I made it about 2 hours and I got this overwhelming need to sleep!! I went into the twins room and just wanted to lay there on the ground and sleep. So, Jon found me in there and rounded the kids up and we left the party! I also have been falling a lot lately! In one incidence I broke my foot! But I fell again about 2 weeks ago! That was fun because my kids all saw this happen. So as I am laying in the middle of the parking lot, my kids are yelling at me "Don't DIE MOMMY!!!!" I HONESTLY DON'T KNOW HOW I AM GOING TO GET UP!! I am trying to calm my kids down and finally we get up and in the car. We are about 10 minutes into the ride and Caylee (4yrs) says, "Mommy I am glad you didn't die because if you did we would have to get a new one!" Yes! Those are the exact words you as a mother want to hear from your only daughter! But, I know she is scared as the rest of us are! Can't really hold that against her!
So thats where we stand now! Keep praying as always HE IS LISTENING! Pray God's will in my life!
This brings me to my next topic, WHAT SYMPTOMS OR HOW AM I DOING PHYSICALLY! I have noticed a lot of changes in me. I get sleepy SUPER quick!! I went to a birthday party for my 6 year old niece and I made it about 2 hours and I got this overwhelming need to sleep!! I went into the twins room and just wanted to lay there on the ground and sleep. So, Jon found me in there and rounded the kids up and we left the party! I also have been falling a lot lately! In one incidence I broke my foot! But I fell again about 2 weeks ago! That was fun because my kids all saw this happen. So as I am laying in the middle of the parking lot, my kids are yelling at me "Don't DIE MOMMY!!!!" I HONESTLY DON'T KNOW HOW I AM GOING TO GET UP!! I am trying to calm my kids down and finally we get up and in the car. We are about 10 minutes into the ride and Caylee (4yrs) says, "Mommy I am glad you didn't die because if you did we would have to get a new one!" Yes! Those are the exact words you as a mother want to hear from your only daughter! But, I know she is scared as the rest of us are! Can't really hold that against her!
So thats where we stand now! Keep praying as always HE IS LISTENING! Pray God's will in my life!
Thursday, August 14, 2014
Catchin' up after Summer!
Sorry it has been so long since I have written! We have been more busy the passed 6 months than we have in the last 3 years combined!! I have been doing chemo every other week! On our weeks off, we try to go do something as a family! So, since December, we went to the Cabins as a family. Had our Christmas there and met Santa, got home and went back onto chemo! Then in February, we decided to get a second opinion at Cancer Treatment Centers of America and we were there, just Jon and I for a week! My parents brought the kids up for the weekend and we went to a ghost town and then went looking a model homes for fun and took the kids to the park and met up with a high school friend! At the last day of the CTCA, they let me know that there wasn't anything more we could do! My original doctor was doing exactly what they would have done from the get go! So we left there broken hearted! Then in March it was off to PARADISE HERE ON EARTH... HAWAII!! The Dream Foundation got us a 3 bedroom, 3 bath condo with full kitchen, a formal living room and a family room right on our own private lagoon! We were there for 5 days and then went back home. All the while, I was still doing my chemo, loosing my hair and being sick when no one is looking!
Then we took a few months off and found COOPERSTOWN CHIROPRACTIC! It was GOD thing!! I just went because we were looking for a doctor who will adjust me because while I was at the Cancer Treatment Center, they told me my back was pretty bad and we needed to get it fixed! So we went to meet the dr and he had told me that he prayed for me that morning! That he believes God has big things in store for me! Since going to dr Cooper, my back feels SO MUCH BETTER! I used to not be able to get out of bed without taking my pain pills and laying in bed for about 30 minutes until they kicked in! Now I can get out of bed and walk without the pain pills! Also, since being there my cancer numbers have dropped by 100 points! I was at 380 and now they are around 280!
At the end of May, the boys got out of school! So for a full month, they were the only kids in the family out of school until mid-end of June. So I had to entertain them with science projects, water play, parks, art, and things like that for a whole month! Whew! I was exhausted!!
On June 19th our family decided to take off and surprise my grandma Harris, and all 14 of us flew to Washington DC, we stayed there for 3 days and saw the monuments, white house, capitol, the Smithsonian's! Our last stop was the Arlington Cemetery! If I could suggest anywhere to go, it would be here! Seeing all the graves of all the soldiers that have laid down their lives for our freedom, was unreal! It was such a great time. Then we rented 3 mini vans and went to Pennsylvania, our first stop was HERSHEY It was more fun than I had remembered it was from my 8th grade trip! The kids were all in heaven!! The next day we went to Philadelphia!! We got dropped off at Independence Hall, saw the Liberty Bell, walked to Ben Franklins house, got authentic Philly Cheesesteaks, walked down to the Delaware River, then back to our hotel. The next morning I got a knock on the door and a friend that I had met on the internet about 10 years ago, surprised me and came to see me!! It was one of the highlights of my trip! Meeting Carol Ann was such a blessing! It was not weird at all and I wish we had longer to hang out together! Then we took off and headed to Gettysburg Pa!. Seriously one of the most beautiful and historical places I have been to! The boys loved it! How could they not when it was filled with guns, cannons, flags, soldiers uniforms, etc... The girls I have to admit were a tiny bored! Then we took off to Virginia and just took a day off to rest! Much needed sleep! In the morning we were off to NORTH CAROLINA to see my family that I haven't seen in forever!! The whole Harris side lives there! We all met at a restaurant, my grandma had no idea we were even coming!! What a great surprise! The whole family came in for the weekend and we stayed for very short time! Then we had the lonely, sad, flight home!! 10 fun filled, packed days of family and it was WONDERFUL!!! Not even the kids fought like they normally do!
Then in July we went on our yearly river trip!! IT WAS AMAZING!! The weather was about 115, but the water was perfect!
In between all the trips, I am still doing chemo and trying to keep the kids busy through the rest of the Summer.
Last trip of the Summer was in August, it was a WONDERFUL Posh convention in Las Vegas. Since Jon and I still celebrate the anniversary of our first date, we decided this would be our trip! We stayed at the Encore and Betsy and Darren were at the connecting hotel the Wynn, so while the girls were in the convention scoring a ton of new product... Darren and Jon were at the pool, gambling and hanging out in Vegas! They would come pick us up fro the convention and then Jon and I would go rest in our room together because it took a lot out of me! Our rooms were gorgeous suites! It was really one of the best weekends of our lives! We are so thankful to God for all the blessings of the trips that we got to do! He provided for us big time! There was no way we would have been able to do any of these trips without God providing us with all the blessings we needed to get there and spread his word~ and I did!!
Which brings us to now... I had a ct scan done yesterday and the dr told me he was not worried because with my numbers falling as they were, I just had a really bad feeling! The next day was chemo and the dr told us the results! He said he was extremely surprised with what he saw! My cancer is actually growning!!! WHAT? HOW? UGH!! So he said, he will give me one last chance for a miracle! He put me on the highest dose of the chemo for the next 3 sessions. After 9 weeks, we are going to do another CT Scan! If it still shows that the chemo is growing. We are going to have to change our course of action. I am thinking he means clinical trials! I don't even know if I want to be a lab rat in front of my kids! So please pray for a BIG MIRACLE to happen in the next 9 weeks
So, the kids started school and I will have more time to jump on here and update the blog
also my friend is setting up meals for our family! Even if you are not in the same state, you can have the company deliver a meal in you! Please email me if you are not on my facebook and are interested in being part of the meals on wheels! My email is ciadamik@aol.com
thank you so much everyonw!!
Then we took a few months off and found COOPERSTOWN CHIROPRACTIC! It was GOD thing!! I just went because we were looking for a doctor who will adjust me because while I was at the Cancer Treatment Center, they told me my back was pretty bad and we needed to get it fixed! So we went to meet the dr and he had told me that he prayed for me that morning! That he believes God has big things in store for me! Since going to dr Cooper, my back feels SO MUCH BETTER! I used to not be able to get out of bed without taking my pain pills and laying in bed for about 30 minutes until they kicked in! Now I can get out of bed and walk without the pain pills! Also, since being there my cancer numbers have dropped by 100 points! I was at 380 and now they are around 280!
At the end of May, the boys got out of school! So for a full month, they were the only kids in the family out of school until mid-end of June. So I had to entertain them with science projects, water play, parks, art, and things like that for a whole month! Whew! I was exhausted!!
On June 19th our family decided to take off and surprise my grandma Harris, and all 14 of us flew to Washington DC, we stayed there for 3 days and saw the monuments, white house, capitol, the Smithsonian's! Our last stop was the Arlington Cemetery! If I could suggest anywhere to go, it would be here! Seeing all the graves of all the soldiers that have laid down their lives for our freedom, was unreal! It was such a great time. Then we rented 3 mini vans and went to Pennsylvania, our first stop was HERSHEY It was more fun than I had remembered it was from my 8th grade trip! The kids were all in heaven!! The next day we went to Philadelphia!! We got dropped off at Independence Hall, saw the Liberty Bell, walked to Ben Franklins house, got authentic Philly Cheesesteaks, walked down to the Delaware River, then back to our hotel. The next morning I got a knock on the door and a friend that I had met on the internet about 10 years ago, surprised me and came to see me!! It was one of the highlights of my trip! Meeting Carol Ann was such a blessing! It was not weird at all and I wish we had longer to hang out together! Then we took off and headed to Gettysburg Pa!. Seriously one of the most beautiful and historical places I have been to! The boys loved it! How could they not when it was filled with guns, cannons, flags, soldiers uniforms, etc... The girls I have to admit were a tiny bored! Then we took off to Virginia and just took a day off to rest! Much needed sleep! In the morning we were off to NORTH CAROLINA to see my family that I haven't seen in forever!! The whole Harris side lives there! We all met at a restaurant, my grandma had no idea we were even coming!! What a great surprise! The whole family came in for the weekend and we stayed for very short time! Then we had the lonely, sad, flight home!! 10 fun filled, packed days of family and it was WONDERFUL!!! Not even the kids fought like they normally do!
Then in July we went on our yearly river trip!! IT WAS AMAZING!! The weather was about 115, but the water was perfect!
In between all the trips, I am still doing chemo and trying to keep the kids busy through the rest of the Summer.
Last trip of the Summer was in August, it was a WONDERFUL Posh convention in Las Vegas. Since Jon and I still celebrate the anniversary of our first date, we decided this would be our trip! We stayed at the Encore and Betsy and Darren were at the connecting hotel the Wynn, so while the girls were in the convention scoring a ton of new product... Darren and Jon were at the pool, gambling and hanging out in Vegas! They would come pick us up fro the convention and then Jon and I would go rest in our room together because it took a lot out of me! Our rooms were gorgeous suites! It was really one of the best weekends of our lives! We are so thankful to God for all the blessings of the trips that we got to do! He provided for us big time! There was no way we would have been able to do any of these trips without God providing us with all the blessings we needed to get there and spread his word~ and I did!!
Which brings us to now... I had a ct scan done yesterday and the dr told me he was not worried because with my numbers falling as they were, I just had a really bad feeling! The next day was chemo and the dr told us the results! He said he was extremely surprised with what he saw! My cancer is actually growning!!! WHAT? HOW? UGH!! So he said, he will give me one last chance for a miracle! He put me on the highest dose of the chemo for the next 3 sessions. After 9 weeks, we are going to do another CT Scan! If it still shows that the chemo is growing. We are going to have to change our course of action. I am thinking he means clinical trials! I don't even know if I want to be a lab rat in front of my kids! So please pray for a BIG MIRACLE to happen in the next 9 weeks
So, the kids started school and I will have more time to jump on here and update the blog
also my friend is setting up meals for our family! Even if you are not in the same state, you can have the company deliver a meal in you! Please email me if you are not on my facebook and are interested in being part of the meals on wheels! My email is ciadamik@aol.com
thank you so much everyonw!!
Wednesday, March 19, 2014
Bald is Beautiful... Right?
We are told in chemo class (a 2 hour class that you take right before you start chemo, I highly recommend taking someone with you who can pay attention!) that you will typically lose your hair around the 21st day after your first dose of chemo. For some reason it took my a good 2 years before my weirdo body decided to lose it. At that time, the first time I lost my hair, I was MORE than ready to shave it. It had been slowly falling out and I waited until the kids were ready and my hair was shoulder length at that time, so the bald spots were covered.
This time, however, was a whole different story! It was day 19 from my first day of being on CPT-11, as I like to call it, the devil. I was a few days away from my second round of chemo, so I decided a long hot bath with a bath bomb was well deserved. I started filling the bath and threw in my favorite bath bomb without even breaking it up, I deserved the WHOLE bomb. As it was filling up and the bomb was fizzing away into the water, turning it a beautiful lavender color, I noticed a couple of strands of hair fall into the sink. Hmm.. that's weird. Not thinking too much about it, I slipped into the warm, relaxing water. AHHH.... This is the life, so I thought. I started praying. I love to pray while in the shower or bath, its quiet, peaceful and the kids KNOW not to bug me unless they are dying! I mean, there had better be blood and a lot of it if they bother me while in the bath. That is my time and I share it with the Lord! I clearly remember being in the middle of singing Great is Thy Faithfulness, when I poured a Super Gulp sized cup of water over my head, when it happened. I stopped mid singing and saw hair EVERYWHERE. Literally a layer of hair floated on top of my beautiful, serene bath full of light purple water! I just sat there in the middle of it stunned... Something is wrong! This is not how it happens to me. First of all, it takes YEARS before my hair decides to fall out and it happens over time, not over night! After I realize what had just happened, I thought, "Well, this is the most that is coming out, surely I won't lose anymore than this!" So I dump the cup over my head again and even more hair fell into the water. I started panicking! I freaked! I started using the cup to get the disgusting, vile, devil hair out of my bath! I needed to get rid of the visual reminder of the battle my body and soul are going through. I fished as much as I could out of the tub and ran my fingers thru my hair and my hand was covered in wet, sticky hair. I jumped up and rinsed the dark brown strands of thick hair down the sink. That's when I lost it. I stood there screaming for my knight in shining armor. "JON!!!!!" I screamed, "I NEED JON!!!" HE WILL FIX IT!! I thought. "JON!!!!" I screeched again. He came running in, probably thinking I was dying! He had a look of sheer terror on his face, he looked around the room like he should be seeing a fire somewhere! I just stood there crying. Finally he said, "What??!! What is wrong? Are you hurt?! Did you get sick again?!" I just pointed to the bath water. He ran and looked (Probably expecting blood) and saw all the hair. He looked at me with sympathy and said, "Oh baby! I am so so sorry!" I really lost it then, like him seeing it too was really proof I was losing my hair. He helped me out and wrapped my towel around me. I grabbed my brush from under the sink and started brushing my thinning hair like a maniac. More and more hair was coming out. It was never ending. He finally took the brush from me and told me to stop, I was only making it worse. I told him I was just getting rid of the loose hairs and he seemed to get a little irritated with me and said, "JUST STOP!! Let's go to bed!" That night I insisted on finding my old head covers and scarves. It has been a year and I have no idea where we put them! I finally found them at the top of my closest and felt OK enough to go to sleep.
The next couple of days were the same. Hair on my pillow, clumps on the floor, on the bathroom floor. HAIR SEEMED TO BE ALL OVER THE PLACE. I had another round of chemo. I told the nurse my hair was thinning. She told me not to do anything drastic because it might just be thinning and not completely falling out. The night after I had chemo, I would run my fingers through my hair and handfuls were coming out. It became an obsession. But I was too sick to do anything about it. The days I have chemo, I can hardly lift my head off the pillow. I lay in bed by myself all day, wishing for time to pass, or wishing for the good Lord to bring me home because I feel so bad. I honestly can not even cry on the days I have chemo because I hurt so much.
The next day, feeling a little bit better, I talk my dad and mom into taking me to the nearest wig shop. I walk in the door and know what I am looking for. I want a wig that looked like me. Pretty plain, shoulder length, no bangs. I found it. I took the wig and put it on and it was "the one"! I bought 2 wigs, rushed out of the wig shop because I was so sick, I thought I was going to throw up on the lady ringing up my purchases. I can not tell you how slow she was going! I felt like screaming at her, "If you don't hurry up, your store is going to be covered in vomit!!" But I just smiled politely as she slowly took my card and slide it through the cash register, promising me she would pray for me. We got home and I showed my family the wigs (after getting sick) They liked them, but Jon seemed, off. We went to bed and back to pulling clumps of hair off my head and then he lost it. He yelled at me to stop, "You are making it worse" he said. I told him, I was not pulling it out, it was falling out on its own. I would rather be in control of it and throw the hair away, then to wake up with it all over my pillow. He was angry. He told me that he wanted me to have hair in Hawaii. HAWAII... That is almost 2 weeks away. At the rate my hair was falling out, there was no way it was going to see Hawaii! So, I decided to really take a look at my hair. I had no idea what it was looking like, since it is impossible to see the top of your own head. From what I saw everyday, it was not that bad! From the front, it just looked a little thin, not bad. So, I took pictures with my phone and to my HORROR, this is what I saw.
After the shock and pure dismay, I honestly couldn't believe what I was seeing! This was of course, 1am because you know me, I am up all night! After the shock wore off, I jumped up and ran into the bathroom like a crazy woman. Grabbed Jon's beard trimmer out of the medicine cabinet. Pulled off the clip and started shaving my hair off over the sink! One minute later, Jon came rushing in begging me to stop. It was too late. I looked up at him, through teary eyes and said, "I can't do it anymore! It's controlling me! I look like a balding old man!" I honestly feel so much better about myself with out hair. Even when I had hair, but it was short, I still felt better in my wigs. Nothing like how good I felt with my natural long hair, but the wig was a close second. Jon took the clippers from me and finished. Then we wet my head, whoa, did that feel weird. Rubbed conditioner over it and used a razor on it. I felt like a weight was lifted off me, but I have to admit, I am not NEAR as OK or as ready as when I first shaved my head.
When we finally got back into my room, at 2am, I looked in the mirror and snapped this picture! It was done!
The next day, the kids got the shock of their lives. I prayed they would take it better this time because they had already went through it before. They all seemed to be good with it. I wore my wig and my head coverings. Caylee seemed a little worried. She asked if her hair would fall out. I told her no, that I was on a special medicine that makes my hair fall out. Then she said, "Mommy, I would never shave my head!" Like I was super crazy for doing it. I told her, "I know! I had to, mommy was looking pretty silly right?" She said, "Yeah! I guess!"
There is a game that Caylee and I always play (about 1-2 times a week) It started in a hotel one night, when we were super bored. I put a blue ribbon in my hair and pretend I am Snow White and she is my friend who warns me about the dangers lurking about in the woods... The scary trees, the witch, the apple... that sort of thing! So the other night I am sitting on my bed, sulking, when she runs in with the ribbon! "Mommy!!!! Will you be Snow White???!!" I looked at her a little surprised and said, "Do you want me to put on a wig?" She looked at me puzzled for a second and said, "No, just put your ribbon on and tie mine on!" I almost cried!! She didn't care that I was bald!! I am just mommy to her! So on went the bows on my very bald, egg shaped head, like a birthday present! She is one of my greatest gifts!!!
Here is my new wig!! Had to show it off too! LOL!
This time, however, was a whole different story! It was day 19 from my first day of being on CPT-11, as I like to call it, the devil. I was a few days away from my second round of chemo, so I decided a long hot bath with a bath bomb was well deserved. I started filling the bath and threw in my favorite bath bomb without even breaking it up, I deserved the WHOLE bomb. As it was filling up and the bomb was fizzing away into the water, turning it a beautiful lavender color, I noticed a couple of strands of hair fall into the sink. Hmm.. that's weird. Not thinking too much about it, I slipped into the warm, relaxing water. AHHH.... This is the life, so I thought. I started praying. I love to pray while in the shower or bath, its quiet, peaceful and the kids KNOW not to bug me unless they are dying! I mean, there had better be blood and a lot of it if they bother me while in the bath. That is my time and I share it with the Lord! I clearly remember being in the middle of singing Great is Thy Faithfulness, when I poured a Super Gulp sized cup of water over my head, when it happened. I stopped mid singing and saw hair EVERYWHERE. Literally a layer of hair floated on top of my beautiful, serene bath full of light purple water! I just sat there in the middle of it stunned... Something is wrong! This is not how it happens to me. First of all, it takes YEARS before my hair decides to fall out and it happens over time, not over night! After I realize what had just happened, I thought, "Well, this is the most that is coming out, surely I won't lose anymore than this!" So I dump the cup over my head again and even more hair fell into the water. I started panicking! I freaked! I started using the cup to get the disgusting, vile, devil hair out of my bath! I needed to get rid of the visual reminder of the battle my body and soul are going through. I fished as much as I could out of the tub and ran my fingers thru my hair and my hand was covered in wet, sticky hair. I jumped up and rinsed the dark brown strands of thick hair down the sink. That's when I lost it. I stood there screaming for my knight in shining armor. "JON!!!!!" I screamed, "I NEED JON!!!" HE WILL FIX IT!! I thought. "JON!!!!" I screeched again. He came running in, probably thinking I was dying! He had a look of sheer terror on his face, he looked around the room like he should be seeing a fire somewhere! I just stood there crying. Finally he said, "What??!! What is wrong? Are you hurt?! Did you get sick again?!" I just pointed to the bath water. He ran and looked (Probably expecting blood) and saw all the hair. He looked at me with sympathy and said, "Oh baby! I am so so sorry!" I really lost it then, like him seeing it too was really proof I was losing my hair. He helped me out and wrapped my towel around me. I grabbed my brush from under the sink and started brushing my thinning hair like a maniac. More and more hair was coming out. It was never ending. He finally took the brush from me and told me to stop, I was only making it worse. I told him I was just getting rid of the loose hairs and he seemed to get a little irritated with me and said, "JUST STOP!! Let's go to bed!" That night I insisted on finding my old head covers and scarves. It has been a year and I have no idea where we put them! I finally found them at the top of my closest and felt OK enough to go to sleep.
The next couple of days were the same. Hair on my pillow, clumps on the floor, on the bathroom floor. HAIR SEEMED TO BE ALL OVER THE PLACE. I had another round of chemo. I told the nurse my hair was thinning. She told me not to do anything drastic because it might just be thinning and not completely falling out. The night after I had chemo, I would run my fingers through my hair and handfuls were coming out. It became an obsession. But I was too sick to do anything about it. The days I have chemo, I can hardly lift my head off the pillow. I lay in bed by myself all day, wishing for time to pass, or wishing for the good Lord to bring me home because I feel so bad. I honestly can not even cry on the days I have chemo because I hurt so much.
The next day, feeling a little bit better, I talk my dad and mom into taking me to the nearest wig shop. I walk in the door and know what I am looking for. I want a wig that looked like me. Pretty plain, shoulder length, no bangs. I found it. I took the wig and put it on and it was "the one"! I bought 2 wigs, rushed out of the wig shop because I was so sick, I thought I was going to throw up on the lady ringing up my purchases. I can not tell you how slow she was going! I felt like screaming at her, "If you don't hurry up, your store is going to be covered in vomit!!" But I just smiled politely as she slowly took my card and slide it through the cash register, promising me she would pray for me. We got home and I showed my family the wigs (after getting sick) They liked them, but Jon seemed, off. We went to bed and back to pulling clumps of hair off my head and then he lost it. He yelled at me to stop, "You are making it worse" he said. I told him, I was not pulling it out, it was falling out on its own. I would rather be in control of it and throw the hair away, then to wake up with it all over my pillow. He was angry. He told me that he wanted me to have hair in Hawaii. HAWAII... That is almost 2 weeks away. At the rate my hair was falling out, there was no way it was going to see Hawaii! So, I decided to really take a look at my hair. I had no idea what it was looking like, since it is impossible to see the top of your own head. From what I saw everyday, it was not that bad! From the front, it just looked a little thin, not bad. So, I took pictures with my phone and to my HORROR, this is what I saw.
When we finally got back into my room, at 2am, I looked in the mirror and snapped this picture! It was done!
The next day, the kids got the shock of their lives. I prayed they would take it better this time because they had already went through it before. They all seemed to be good with it. I wore my wig and my head coverings. Caylee seemed a little worried. She asked if her hair would fall out. I told her no, that I was on a special medicine that makes my hair fall out. Then she said, "Mommy, I would never shave my head!" Like I was super crazy for doing it. I told her, "I know! I had to, mommy was looking pretty silly right?" She said, "Yeah! I guess!"
There is a game that Caylee and I always play (about 1-2 times a week) It started in a hotel one night, when we were super bored. I put a blue ribbon in my hair and pretend I am Snow White and she is my friend who warns me about the dangers lurking about in the woods... The scary trees, the witch, the apple... that sort of thing! So the other night I am sitting on my bed, sulking, when she runs in with the ribbon! "Mommy!!!! Will you be Snow White???!!" I looked at her a little surprised and said, "Do you want me to put on a wig?" She looked at me puzzled for a second and said, "No, just put your ribbon on and tie mine on!" I almost cried!! She didn't care that I was bald!! I am just mommy to her! So on went the bows on my very bald, egg shaped head, like a birthday present! She is one of my greatest gifts!!!
Wednesday, March 12, 2014
ALOHA!!!!! A little bad news, but also GREAT news!!
It's time for a little update on us!! I found out that the cancer is growing SLIGHTLY again... We found out the Monday before we left for the Cancer Treatment Centers of America in Phoenix! So we were VERY scared! But we KNOW God is in control and all this happened in perfect timing. HIS perfect timing! So after finding out about the growth, we decided to drive instead of fly, to Arizona.
The week we were in Arizona happened to land on Valentines Day and our wedding anniversary. So, except for the circumstances being what they were to lead us to Arizona, we also made it a little trip away to celebrate! Gotta take as much good as we can right? When life gives you lemons... So we get to Arizona and the CTCA has set us up in a beautiful suite!! It was perfect! The first day we get there, we settle in and are given a schedule for the next day! They are so organized there. We get to the hospital, which does NOT look like any hospital I have been to, and we meet Nicole. See was a new hire there at CTCA, she was hired as a Senior Director of Public Relations (I think!! I know it was a pretty high up position! Forgive me Nicole if I butchered your title!) Right away, I knew we were going to be FAST friends! She was absolutely amazing, made us feel so comfortable and walked us through our journey at CTCA. The place is amazing, if you are feeling stressed, you go and set up an appointment for a massage! You need your hair or nails done, set up an appointment with the salon! ALL FREE!!! They tailor-make you a team that is specifically is for you! You get your own nurse, holistic doctor, dietician, general doctor, G-I doctor (who promised I would never have to have another colonoscopy ever!) They make a menu plan just for you! Teach you which foods to stay away from, which to make a habit of eating. It's a place like I have never experienced ever. I was in awe of the entire idea of this place. Their mission statement is to treat each patient as if you are treating your own mother! They make you a top priority. You are not just another cancer patient! They treat the WHOLE person, not just the cancer. When they found out my back was in constant pain, to the point that in the morning, I can't walk until I am up and around for about 15 mins or so. So they sent me down the hall to the chiro! I went in and got my first adjustment there. I felt IMMEDIATELY better!!! My neck felt light as air after! I didn't even know my neck was bothering me. The chiro actually put my mind as ease because my dr at St Jude wanted to get my back checked out by doing a 2 hour MRI, because he said that the pain maybe cancer that has moved to my back! I asked him what the treatment would be if it were cancer. He said, "Nothing really, but pain management. We will not do surgery on you with how progressed your cancer is at this time." So, what a relief it was to hear that the chiro was 99% sure that it was just that I need about 12-15 adjustments to get my back in shape again. After that adjustment, it was a miracle, I got out of bed without holding on to the wall and hunched over for the first 15 minutes. So as of today tho, I am back to holding walls and taking my time trying to walk. But that was to be expected since I have not sought out treatment once I came home. I was also referred to genetic testing to see if my cancer is hereditary. If it is, all my relatives can go in and do a simple blood test and the will compare my DNA strand that has the cancer mutation in it and they compare to my relatives and they can rule out whether they will have Colon Cancer or if they do not carry the mutation. When they found out about my mother's disease she has, Nuerofibromitosis 2, they wanted to do the same to her as well and can test all the relatives for that as well.This is all still in the beginning stages and after I turn in the paperwork in for that, we can get the testing rolling.
So after being at CTCA for a week, going through a bajillion tests and being evaluated for about 5 days. On the last day, my oncologist goes through my results from the week of testing and my medical history, he told me what I had already suspected, but was half hopeful he would not say. Let me preface, this is a GOOD thing what I found out, but not exactly what I wanted to hear, but I will take it! I was told by my oncologist at CTCA that they are confident in my dr here at St Jude. He has been doing and is continuing to do exactly what they would be doing and what they would have done thus far! We all agreed that the best treatment plan for me would be to continue the treatment I have been already getting thru St Jude. I would be saving money and I would not have to leave my kids for a week every 3 weeks while I had chemo in Arizona. The doctor left and Jon, Nicole and I, got up and just held each other and cried like babies. Yes, its great my dr is doing the best he can for me and he has been. That is very comforting to know. Its also awesome I will not be leaving my kids for all that lost precious time that I should be with them! The bummer is, I did not receive the miracle we were all so hoping for there!! So, we wait on the Lord a little longer!
So we leave Arizona, which turned out so great! On the vacation front, my parents brought the kids for the weekend and went to a Ghost Town, we went swimming, out to eat. We even met up with a friend we hadn't seen since high school and her daughter and went to the park! So it was a great trip, gave us some alone time for our anniversary and it gave us peace of mind that we are doing the right thing by staying at St Jude! We got home from Arizona and called my dr and set up my chemo for the day after I came home and went back on my full chemo regiment!
So I back on the monster that is CPT-11!! MAN!! What a ride this one is taking me on! I have been off of it since June, but it had never made me sick, EVER!! This first week I was back on it, I was throwing up and felt terrible for about a week and a half! I would just be sitting here, talking to Jon and give him "the look" and he would rush my throw up bucket to me and out everything would come! Also, when I was on it before, it took being on it for 2 years for my hair to fall out! They say if you are going to lose your hair, it will be about the 21st day after your chemo treatment. Well, let me tell you, around day 19, I decided to take a nice relaxing bath and do a face mask! I was finally feeling better and thought I would take advantage! So I lay back in the bath and dunk my head underwater. I came back up to a TON of hair floating around me!! I was SHOCKED!! I honestly did not expect this! So more and more and more came off my head. So I decided I was not going to stretch this out like I did last time. The next morning, I got up and we to the nearest Fantastic Sams and cut my hair super short! I did leave it about 2 inches long on top, but the back is pretty much shaved. As the days have progressed, more hair is falling out! So I am thinking it would be best for all involved to just shave it off completely! That way they are used to it by Hawaii!
Which brings me to my final point I wanted to talk about! The wonderful person I had mentioned in my last post, Kria, she has been sending in a ton of paperwork to so many different foundations! For instance, one day I got a $500 check in the mail and another $275 from a different foundation she found for us, that they wants to pay the next 4 months of car payments for us!! Well, the biggest one came thru, we all thought that there was no way we would get to use this foundation. Its the www.dreamfoundation.org and they will try to grant any dream you would like. Its available for all patients who are terminal! Well, we went big!! We asked for a weeks stay in Hawaii!! We were awarded the trip and leaving in less than 2 weeks!! They got us a 3 bedroom condo with 5 round trip tickets to OAHU!! They are coming Friday to present us with our gift and all the tickets, They asked us to have someone here to video it!! We leave for Hawaii on Monday the 23rd of March and we leave on Friday the 28th! We just have to have money for food and spending cash, they also require $1000 to be in your bank account at all times, just in case we have money set aside for an emergencies! Which is smart and something I should keep on hand anyway!
So tomorrow is the big day!! When I was off for a while with my first chemo, on the second session of going back on it, I became allergic and can never have it again. If this happens tomorrow with this one. If I become allergic to this last chemo... there is nothing left to be done for me! I just have this horrible voice in my ear saying, "You were never sick on it before, it took YEARS for my hair to fall out and I am almost bald right now! These are all precursors to me becoming allergic tomorrow. Only time will tell and like this whole journey has been, it is in God's hands and that is the best place it could be!!
So onto more good news!! Josiah is slowly coming out of his hair, we have decided to start slowly weaning him off the Ritalin, he is in the 40% for weight and the best news... He asked us if he could be in soccer!!! We signed him up really quick and got him into Spring Soccer in Fullerton Rangers! He also came home from school saying that he is trying out for the musicals at school, GREASE or BYE BYE BIRDIE! WHAT AN ANSWER TO PRAYER!! I would have been knocked of my rocker if you told me he would be doing these things willingly!!! PRAISE GOD!!!! He is listening to our prayers and answering them in His perfect timing!
The week we were in Arizona happened to land on Valentines Day and our wedding anniversary. So, except for the circumstances being what they were to lead us to Arizona, we also made it a little trip away to celebrate! Gotta take as much good as we can right? When life gives you lemons... So we get to Arizona and the CTCA has set us up in a beautiful suite!! It was perfect! The first day we get there, we settle in and are given a schedule for the next day! They are so organized there. We get to the hospital, which does NOT look like any hospital I have been to, and we meet Nicole. See was a new hire there at CTCA, she was hired as a Senior Director of Public Relations (I think!! I know it was a pretty high up position! Forgive me Nicole if I butchered your title!) Right away, I knew we were going to be FAST friends! She was absolutely amazing, made us feel so comfortable and walked us through our journey at CTCA. The place is amazing, if you are feeling stressed, you go and set up an appointment for a massage! You need your hair or nails done, set up an appointment with the salon! ALL FREE!!! They tailor-make you a team that is specifically is for you! You get your own nurse, holistic doctor, dietician, general doctor, G-I doctor (who promised I would never have to have another colonoscopy ever!) They make a menu plan just for you! Teach you which foods to stay away from, which to make a habit of eating. It's a place like I have never experienced ever. I was in awe of the entire idea of this place. Their mission statement is to treat each patient as if you are treating your own mother! They make you a top priority. You are not just another cancer patient! They treat the WHOLE person, not just the cancer. When they found out my back was in constant pain, to the point that in the morning, I can't walk until I am up and around for about 15 mins or so. So they sent me down the hall to the chiro! I went in and got my first adjustment there. I felt IMMEDIATELY better!!! My neck felt light as air after! I didn't even know my neck was bothering me. The chiro actually put my mind as ease because my dr at St Jude wanted to get my back checked out by doing a 2 hour MRI, because he said that the pain maybe cancer that has moved to my back! I asked him what the treatment would be if it were cancer. He said, "Nothing really, but pain management. We will not do surgery on you with how progressed your cancer is at this time." So, what a relief it was to hear that the chiro was 99% sure that it was just that I need about 12-15 adjustments to get my back in shape again. After that adjustment, it was a miracle, I got out of bed without holding on to the wall and hunched over for the first 15 minutes. So as of today tho, I am back to holding walls and taking my time trying to walk. But that was to be expected since I have not sought out treatment once I came home. I was also referred to genetic testing to see if my cancer is hereditary. If it is, all my relatives can go in and do a simple blood test and the will compare my DNA strand that has the cancer mutation in it and they compare to my relatives and they can rule out whether they will have Colon Cancer or if they do not carry the mutation. When they found out about my mother's disease she has, Nuerofibromitosis 2, they wanted to do the same to her as well and can test all the relatives for that as well.This is all still in the beginning stages and after I turn in the paperwork in for that, we can get the testing rolling.
So after being at CTCA for a week, going through a bajillion tests and being evaluated for about 5 days. On the last day, my oncologist goes through my results from the week of testing and my medical history, he told me what I had already suspected, but was half hopeful he would not say. Let me preface, this is a GOOD thing what I found out, but not exactly what I wanted to hear, but I will take it! I was told by my oncologist at CTCA that they are confident in my dr here at St Jude. He has been doing and is continuing to do exactly what they would be doing and what they would have done thus far! We all agreed that the best treatment plan for me would be to continue the treatment I have been already getting thru St Jude. I would be saving money and I would not have to leave my kids for a week every 3 weeks while I had chemo in Arizona. The doctor left and Jon, Nicole and I, got up and just held each other and cried like babies. Yes, its great my dr is doing the best he can for me and he has been. That is very comforting to know. Its also awesome I will not be leaving my kids for all that lost precious time that I should be with them! The bummer is, I did not receive the miracle we were all so hoping for there!! So, we wait on the Lord a little longer!
So we leave Arizona, which turned out so great! On the vacation front, my parents brought the kids for the weekend and went to a Ghost Town, we went swimming, out to eat. We even met up with a friend we hadn't seen since high school and her daughter and went to the park! So it was a great trip, gave us some alone time for our anniversary and it gave us peace of mind that we are doing the right thing by staying at St Jude! We got home from Arizona and called my dr and set up my chemo for the day after I came home and went back on my full chemo regiment!
So I back on the monster that is CPT-11!! MAN!! What a ride this one is taking me on! I have been off of it since June, but it had never made me sick, EVER!! This first week I was back on it, I was throwing up and felt terrible for about a week and a half! I would just be sitting here, talking to Jon and give him "the look" and he would rush my throw up bucket to me and out everything would come! Also, when I was on it before, it took being on it for 2 years for my hair to fall out! They say if you are going to lose your hair, it will be about the 21st day after your chemo treatment. Well, let me tell you, around day 19, I decided to take a nice relaxing bath and do a face mask! I was finally feeling better and thought I would take advantage! So I lay back in the bath and dunk my head underwater. I came back up to a TON of hair floating around me!! I was SHOCKED!! I honestly did not expect this! So more and more and more came off my head. So I decided I was not going to stretch this out like I did last time. The next morning, I got up and we to the nearest Fantastic Sams and cut my hair super short! I did leave it about 2 inches long on top, but the back is pretty much shaved. As the days have progressed, more hair is falling out! So I am thinking it would be best for all involved to just shave it off completely! That way they are used to it by Hawaii!
Which brings me to my final point I wanted to talk about! The wonderful person I had mentioned in my last post, Kria, she has been sending in a ton of paperwork to so many different foundations! For instance, one day I got a $500 check in the mail and another $275 from a different foundation she found for us, that they wants to pay the next 4 months of car payments for us!! Well, the biggest one came thru, we all thought that there was no way we would get to use this foundation. Its the www.dreamfoundation.org and they will try to grant any dream you would like. Its available for all patients who are terminal! Well, we went big!! We asked for a weeks stay in Hawaii!! We were awarded the trip and leaving in less than 2 weeks!! They got us a 3 bedroom condo with 5 round trip tickets to OAHU!! They are coming Friday to present us with our gift and all the tickets, They asked us to have someone here to video it!! We leave for Hawaii on Monday the 23rd of March and we leave on Friday the 28th! We just have to have money for food and spending cash, they also require $1000 to be in your bank account at all times, just in case we have money set aside for an emergencies! Which is smart and something I should keep on hand anyway!
So tomorrow is the big day!! When I was off for a while with my first chemo, on the second session of going back on it, I became allergic and can never have it again. If this happens tomorrow with this one. If I become allergic to this last chemo... there is nothing left to be done for me! I just have this horrible voice in my ear saying, "You were never sick on it before, it took YEARS for my hair to fall out and I am almost bald right now! These are all precursors to me becoming allergic tomorrow. Only time will tell and like this whole journey has been, it is in God's hands and that is the best place it could be!!
So onto more good news!! Josiah is slowly coming out of his hair, we have decided to start slowly weaning him off the Ritalin, he is in the 40% for weight and the best news... He asked us if he could be in soccer!!! We signed him up really quick and got him into Spring Soccer in Fullerton Rangers! He also came home from school saying that he is trying out for the musicals at school, GREASE or BYE BYE BIRDIE! WHAT AN ANSWER TO PRAYER!! I would have been knocked of my rocker if you told me he would be doing these things willingly!!! PRAISE GOD!!!! He is listening to our prayers and answering them in His perfect timing!
Sunday, January 19, 2014
Lots and Lots going on... Time for an update! :)
I hope you all had a very blessed holiday season! It went so quickly! We packed in a TON of things in the time between Thanksgiving and the New Year! We celebrated Jonny's 12th birthday, got the stomach flu and had to reschedule Caylee's 4th birthday, saw Christmas lights in Brea, had our annual family pictures done, I was the speaker at our church's annual "Christmas with Friends", celebrated my dad's 60th birthday, celebrated Jon's dad's birthday and had a wonderful Christmas celebration with the Adamik side of the family, and went to Lake Arrowhead to spend Christmas in the mountains! (I am probably forgetting things, but you get the drift... we were BUSY!) We actually had a white Christmas!! We all prayed for enough snow to play in, but not a blizzard. Ask and you shall receive! It was an amazing time for our family! A week that no one in our family will forget! With the Christmas season behind us, we are now back in the grind and working our tails off, like usual!
After the hustle and bustle of Christmas was over, we met a new friend! Her name is Kris and she has done so much for our family... it's UNREAL!! She knows a lot about medical billing, social security and getting grants for people in our situation. We started talking and bonded quickly through our love of Christ and our medical whoas. I won't go into what she is going through, but she too has medical issues and knows all about the ins and outs of getting social security (which I have been denied twice already for) and dealing with pushy people who do NOT want you to get the help financially that you deserve and need! She took the mounding pile of medical bills... over $25,000 (this number does not include the numerous copays or the cost of our monthly prescriptions that we have to pay out of pocket each month) and growing and has decided, with no gain to herself, to tackle our financial "Mount Everest"! She is also going after social security to get me the paycheck I deserve from them and she also has contacted countless foundations to help get us grants to help us pay for things such as monthly prescriptions, copays (we have over $150 just in copayments, every 3 weeks), childcare (this would be extra childcare for times when I have appointments or anything medical related and I don't have someone to watch Caylee, after school hours) to help with food, rent, bills in general, for money to do with what we see fit to use it for and also for a dream vacation for our family! (Please pray that these grants go through and we get the help we so desperately need!) In a month's time, she has done more than I could have done myself in a lifetime!! I can't begin to explain the agonizing process of trying to be awarded a grant! They ask you every question you can think of! First of all, she spent days and days searching the web to find foundations that we meet the criteria for. Then she organized all the questions and paperwork we would need to give her in order to apply. Kris has spent HOURS UPON HOURS, filling out paperwork for our family... HOURS of sitting on hold with agencies such as social security office or our insurance company, just to be disconnected after sitting on hold for over an hour! (this has happened to her more than once!) She literally came over with her husband and copied every important document we have such as marriage license, drivers license, birth certificates, insurance cards, all our bills that have gone to collection, wrote down every prescription I take (chemos included) then she took all this home and formed spreadsheets with all our info, so when she fills out the applications for everything, she has all the answers in one spot. She calls me and keeps me updated on how things are going and she will call when she needs more information for a form. She actually started feeling BAD for calling me too much and she told me she would go to Jon with the questions because she doesn't want to stress me out! She was actually apologizing to me about this and explaining herself saying, "I promise, once I get ALL the information, I will never have to ask you for it again! So in the beginning its going to be a lot of phone calls, texts and that sort, but once its all down on the spreadsheet, I can just refer back to that and not have to bother you anymore!" BOTHER ME? Is she joking? I feel terrible for doing this to her! One day I called her just to talk and say hi, I said, "What's wrong? Are you not feeling good?" and she said, "No, I am ok, I didn't get very much sleep because I was up until 5am doing paperwork for this awesome grant that I really want you guys to get!" She is spending more time doing the paperwork, then she would working a full time job! I can't even begin to think how upset her husband and kids are that she is spending her precious time away from her family to do this for us! (Remember she too is sick on SSDI herself!) Then there are the countless trips she has made to the dr's office to demand that all the grant application papers she is filling out will be signed by the doctor in a timely manner. Our doctors charge $15 a SIGNATURE, she did NOT accept this, we went into the doctor's office with a stack of grants that needed to be signed ($145 dollars worth of signatures to be exact) and she went to the top of the chain and complained to the social worker of the oncology department at St Jude, and explained, "They can not afford to pay you the copays, let alone $15 per signature! They can NOT pay this!" St Jude agreed that we would not have to pay for the signatures!!! She is seriously one in a million!!!! So far we have been awarded a couple of grants and in the next few weeks, we will find out if we will be awarded or denied the rest of them! Some of the grants that we have already been awarded are for copay assistance, for some of my chemo and prescriptions.We have also been awarded a grant from a organization called Mommy and Me. They will help us get groceries, child care, they set up fun mommy and me dates (such as tea parties) They are an awesome organization! Needless to say, Kris is a real live angel here on earth who is completely turning our life around! If you would like to help Kris or if you know of an organization that you think would be helpful for our family, you can email her at christiannerocks77@gmail.com
This leads me to the life change that is coming up for me and actually our entire family! While Kris was spending her countless, precious free hours trying to get me the financial help we need, she also spent her time trying to better my health as she was at it! MANY OF YOU have begged me to get a second opinion and to look into other means of treatment. I was just too nervous and scared to do it! One day as I was cleaning the house, I got a call from Kris. She sounded a little nervous as she talked. She proceeded to say, "I did something and I hope you are not mad! If you don't want to do this, I will not feel bad AT ALL! Please don't be upset with me, I just want what is best for you!" THEN I GOT NERVOUS! ha ha ha! She told me that she contacted the Cancer Treatment Centers of America and they think I am a very good candidate and that they think they can really help me out! MAD??? NO WAY!! She gave me the push I needed to start being proactive in my fight against cancer! I would have never been able to do it alone! I am such an anxiety ridden person, that there is no way I could have made that phone call myself. So Kris did a conference call and they told me that they are number 1 in the country in fighting cancer and colon cancer is one of their top specialties! The lady (Linda) from CTCA, told me the first thing was to see if I even qualify for it! They were going to contact my insurance and IF my insurance accepts them, then we will move on to the next step! This first phone call was on a Friday night at around 9pm. On the following Monday at around 12pm, I got a phone call saying I WAS ACCEPTED INTO THE PROGRAM AND MY INSURANCE CONSIDERS IT AN IN NETWORK HOSPITAL!! What that means is, it will be no more money out of our pocket to go to CTCA than it would be to go to St Jude!! (So my annual out of pocket is around $7000, plus copays and prescriptions)
So let me just give you what I know so far. I leave for Phoenix AZ, for 5-10 days (depending on what they can do for me) They may do my evaluation and tell me that St Jude is doing all that can be done for me and to go home and just to continue the treatment with St Jude, without the help from CTCA! Or they can totally help me and change up my treatment to be more aggressive. I leave on the evening of February 12th, which is Josiah's 10th birthday. So with the help of my Facebook friends, we will be taking the kids to Disneyland the day before Jon and I leave. We want to give them a "dream" day. We are hoping to raise enough money to do extra special things at Disneyland such as the Bibbidi Bobbidi Boutique (for Caylee) and the "build your own lightsaber" (for the boys)! We want to be able to give them a carefree day to do whatever their little hearts desire. I want you to take a minute and really think about what my kids go through. They are literally watching their mom slowly pass away and there is nothing they can do about it. They are old enough to KNOW what is going on and they feel like they have to be these brave soldiers for their mom. Josiah absolutely refuses to talk to anyone, I had a little break through with him on Christmas Eve and he admitted he hates watching this happen to me! Caylee is too young to realize that mom's are not supposed to be taking pills all the time, falling asleep in the middle of a conversation or having to go to the doctor constantly. Jonny suffers with nightmares! He is 12 years old and RUNS into our room in the middle of the night in a panic with tears streaming down his face saying, 'I JUST HAD THE DREAM AGAIN THAT THE DOCTOR TOLD ME YOU WERE DEAD!!!" He is old enough to realize, he will one day live that nightmare!! But they are the reason I am going to the CTCA! I have to exhaust ALL avenues to show them that I am fighting so hard to stay on this Earth for as long as I can to be with them!
We have NEVER been away from the kids this long EVER!! The longest we have been away from the kids is 2 nights! The CTCA wanted us to fly out there on January 23rd, but that is just too soon for us and we have too many obligations to take care of before we go! WE ARE NOT TELLING OUR KIDS WHERE I AM GOING UNTIL AFTER WE COME BACK!! So PLEASE do not say anything to them! After we get back and have all the information, we will let them know what is going on. My kids are VERY stressed out and they call me from school just to check on me. They have a VERY hard time when I am in the hospital and Josiah usually begs to stay with me over night when I am in the hospital, so if they knew I was in the hospital in another state for up to 10 days (not being down the street where they could just come and see me), they would be total wrecks! Of course, we will let them know we are going to be gone for about a week, but they don't need the stress of knowing that I will be in pain or sick and they can not physically be with me!
Another thing we know for sure is that the CTCA is paying for Jon and I to fly to Phoenix and stay in their "hotel". The hotel is actually in the hospital, it is COMPLETELY set up like a hotel. It has a flat screen tv, wifi, a regular king sized bed , in room movies, a washer and dryer down the hall and a library to check out books and board games. The food is the hospital cafeteria, which boasts of its own chef. There are plenty of options (as cancer patients will only eat what they crave) and we get our food at a reduced price. (Around $15-$20 per day per person, we pay for our food) The menu caters to you individually as you are assigned a nutritionist who creates a food plan to attack the cancer. Each persons food plan is different! There is a shuttle that will take us around to different shopping malls, museums and restaurants around the city.
The first 3-5 days are evaluation days. This is where they poke, prod, do scans, MRI's, and other tests to really get a full work up on you. During this time, they determine whether they can help or not! If they can not help me, I will be sent home after 5 days. If they think they can even just prolong my life 1 month, I will start my new treatments and do a round of chemo while I am there! CTCA have the newest and best machines in the country. The are also on top of the newest chemos and other treatments that is out there!
The CTCA does NOT replace St Jude or my oncologist! They work WITH them! They work hand in hand to give me the best treatment possible. So, if all goes as planned, I will return home after about 10 days and they will contact St Jude and send my new treatment plan to St Jude to have them administer my new regiment to me. I will continue to do my chemo treatments at St Jude. Then every 3 months or so (maybe even less) I return to Phoenix (I will drive and will be reimbursed mileage) for more tests, scans and evaluations! They want to make sure what they are doing is actually working and if its not, they will adjust my meds accordingly.
This is pretty much all I know for now! I will keep you all updated as much as I possibly can! I don't know how I will be feeling, so if I can not update the blog, I will find someone who can! I am sure I will NOT be feeling as good as I am now, since I am only on maintenance chemo now, not attacking the chemo, just keeping it at bay. So, I am sure the new chemo treatment will be A LOT more aggressive!
PLEASE CONTINUE TO PRAY FOR ME AND MY FAMILY!!! This is a scary but exciting time for us! God has been so good to us and I am so thankful for all my blessings, my friends, the prayers and the gifts we received over the last 2 and a half years! God has held me near to him during this trial. I am so thankful for each day he has given me with my family and all of you! KEEP PRAYING, GOD IS LISTENING!! We love you and you all mean so much to us! NOW IT'S TIME TO KICK CANCER IN THE BEHIND!! (Sorry if this started not making sense, my pills are kicking in!)
After the hustle and bustle of Christmas was over, we met a new friend! Her name is Kris and she has done so much for our family... it's UNREAL!! She knows a lot about medical billing, social security and getting grants for people in our situation. We started talking and bonded quickly through our love of Christ and our medical whoas. I won't go into what she is going through, but she too has medical issues and knows all about the ins and outs of getting social security (which I have been denied twice already for) and dealing with pushy people who do NOT want you to get the help financially that you deserve and need! She took the mounding pile of medical bills... over $25,000 (this number does not include the numerous copays or the cost of our monthly prescriptions that we have to pay out of pocket each month) and growing and has decided, with no gain to herself, to tackle our financial "Mount Everest"! She is also going after social security to get me the paycheck I deserve from them and she also has contacted countless foundations to help get us grants to help us pay for things such as monthly prescriptions, copays (we have over $150 just in copayments, every 3 weeks), childcare (this would be extra childcare for times when I have appointments or anything medical related and I don't have someone to watch Caylee, after school hours) to help with food, rent, bills in general, for money to do with what we see fit to use it for and also for a dream vacation for our family! (Please pray that these grants go through and we get the help we so desperately need!) In a month's time, she has done more than I could have done myself in a lifetime!! I can't begin to explain the agonizing process of trying to be awarded a grant! They ask you every question you can think of! First of all, she spent days and days searching the web to find foundations that we meet the criteria for. Then she organized all the questions and paperwork we would need to give her in order to apply. Kris has spent HOURS UPON HOURS, filling out paperwork for our family... HOURS of sitting on hold with agencies such as social security office or our insurance company, just to be disconnected after sitting on hold for over an hour! (this has happened to her more than once!) She literally came over with her husband and copied every important document we have such as marriage license, drivers license, birth certificates, insurance cards, all our bills that have gone to collection, wrote down every prescription I take (chemos included) then she took all this home and formed spreadsheets with all our info, so when she fills out the applications for everything, she has all the answers in one spot. She calls me and keeps me updated on how things are going and she will call when she needs more information for a form. She actually started feeling BAD for calling me too much and she told me she would go to Jon with the questions because she doesn't want to stress me out! She was actually apologizing to me about this and explaining herself saying, "I promise, once I get ALL the information, I will never have to ask you for it again! So in the beginning its going to be a lot of phone calls, texts and that sort, but once its all down on the spreadsheet, I can just refer back to that and not have to bother you anymore!" BOTHER ME? Is she joking? I feel terrible for doing this to her! One day I called her just to talk and say hi, I said, "What's wrong? Are you not feeling good?" and she said, "No, I am ok, I didn't get very much sleep because I was up until 5am doing paperwork for this awesome grant that I really want you guys to get!" She is spending more time doing the paperwork, then she would working a full time job! I can't even begin to think how upset her husband and kids are that she is spending her precious time away from her family to do this for us! (Remember she too is sick on SSDI herself!) Then there are the countless trips she has made to the dr's office to demand that all the grant application papers she is filling out will be signed by the doctor in a timely manner. Our doctors charge $15 a SIGNATURE, she did NOT accept this, we went into the doctor's office with a stack of grants that needed to be signed ($145 dollars worth of signatures to be exact) and she went to the top of the chain and complained to the social worker of the oncology department at St Jude, and explained, "They can not afford to pay you the copays, let alone $15 per signature! They can NOT pay this!" St Jude agreed that we would not have to pay for the signatures!!! She is seriously one in a million!!!! So far we have been awarded a couple of grants and in the next few weeks, we will find out if we will be awarded or denied the rest of them! Some of the grants that we have already been awarded are for copay assistance, for some of my chemo and prescriptions.We have also been awarded a grant from a organization called Mommy and Me. They will help us get groceries, child care, they set up fun mommy and me dates (such as tea parties) They are an awesome organization! Needless to say, Kris is a real live angel here on earth who is completely turning our life around! If you would like to help Kris or if you know of an organization that you think would be helpful for our family, you can email her at christiannerocks77@gmail.com
This leads me to the life change that is coming up for me and actually our entire family! While Kris was spending her countless, precious free hours trying to get me the financial help we need, she also spent her time trying to better my health as she was at it! MANY OF YOU have begged me to get a second opinion and to look into other means of treatment. I was just too nervous and scared to do it! One day as I was cleaning the house, I got a call from Kris. She sounded a little nervous as she talked. She proceeded to say, "I did something and I hope you are not mad! If you don't want to do this, I will not feel bad AT ALL! Please don't be upset with me, I just want what is best for you!" THEN I GOT NERVOUS! ha ha ha! She told me that she contacted the Cancer Treatment Centers of America and they think I am a very good candidate and that they think they can really help me out! MAD??? NO WAY!! She gave me the push I needed to start being proactive in my fight against cancer! I would have never been able to do it alone! I am such an anxiety ridden person, that there is no way I could have made that phone call myself. So Kris did a conference call and they told me that they are number 1 in the country in fighting cancer and colon cancer is one of their top specialties! The lady (Linda) from CTCA, told me the first thing was to see if I even qualify for it! They were going to contact my insurance and IF my insurance accepts them, then we will move on to the next step! This first phone call was on a Friday night at around 9pm. On the following Monday at around 12pm, I got a phone call saying I WAS ACCEPTED INTO THE PROGRAM AND MY INSURANCE CONSIDERS IT AN IN NETWORK HOSPITAL!! What that means is, it will be no more money out of our pocket to go to CTCA than it would be to go to St Jude!! (So my annual out of pocket is around $7000, plus copays and prescriptions)
So let me just give you what I know so far. I leave for Phoenix AZ, for 5-10 days (depending on what they can do for me) They may do my evaluation and tell me that St Jude is doing all that can be done for me and to go home and just to continue the treatment with St Jude, without the help from CTCA! Or they can totally help me and change up my treatment to be more aggressive. I leave on the evening of February 12th, which is Josiah's 10th birthday. So with the help of my Facebook friends, we will be taking the kids to Disneyland the day before Jon and I leave. We want to give them a "dream" day. We are hoping to raise enough money to do extra special things at Disneyland such as the Bibbidi Bobbidi Boutique (for Caylee) and the "build your own lightsaber" (for the boys)! We want to be able to give them a carefree day to do whatever their little hearts desire. I want you to take a minute and really think about what my kids go through. They are literally watching their mom slowly pass away and there is nothing they can do about it. They are old enough to KNOW what is going on and they feel like they have to be these brave soldiers for their mom. Josiah absolutely refuses to talk to anyone, I had a little break through with him on Christmas Eve and he admitted he hates watching this happen to me! Caylee is too young to realize that mom's are not supposed to be taking pills all the time, falling asleep in the middle of a conversation or having to go to the doctor constantly. Jonny suffers with nightmares! He is 12 years old and RUNS into our room in the middle of the night in a panic with tears streaming down his face saying, 'I JUST HAD THE DREAM AGAIN THAT THE DOCTOR TOLD ME YOU WERE DEAD!!!" He is old enough to realize, he will one day live that nightmare!! But they are the reason I am going to the CTCA! I have to exhaust ALL avenues to show them that I am fighting so hard to stay on this Earth for as long as I can to be with them!
We have NEVER been away from the kids this long EVER!! The longest we have been away from the kids is 2 nights! The CTCA wanted us to fly out there on January 23rd, but that is just too soon for us and we have too many obligations to take care of before we go! WE ARE NOT TELLING OUR KIDS WHERE I AM GOING UNTIL AFTER WE COME BACK!! So PLEASE do not say anything to them! After we get back and have all the information, we will let them know what is going on. My kids are VERY stressed out and they call me from school just to check on me. They have a VERY hard time when I am in the hospital and Josiah usually begs to stay with me over night when I am in the hospital, so if they knew I was in the hospital in another state for up to 10 days (not being down the street where they could just come and see me), they would be total wrecks! Of course, we will let them know we are going to be gone for about a week, but they don't need the stress of knowing that I will be in pain or sick and they can not physically be with me!
Another thing we know for sure is that the CTCA is paying for Jon and I to fly to Phoenix and stay in their "hotel". The hotel is actually in the hospital, it is COMPLETELY set up like a hotel. It has a flat screen tv, wifi, a regular king sized bed , in room movies, a washer and dryer down the hall and a library to check out books and board games. The food is the hospital cafeteria, which boasts of its own chef. There are plenty of options (as cancer patients will only eat what they crave) and we get our food at a reduced price. (Around $15-$20 per day per person, we pay for our food) The menu caters to you individually as you are assigned a nutritionist who creates a food plan to attack the cancer. Each persons food plan is different! There is a shuttle that will take us around to different shopping malls, museums and restaurants around the city.
The first 3-5 days are evaluation days. This is where they poke, prod, do scans, MRI's, and other tests to really get a full work up on you. During this time, they determine whether they can help or not! If they can not help me, I will be sent home after 5 days. If they think they can even just prolong my life 1 month, I will start my new treatments and do a round of chemo while I am there! CTCA have the newest and best machines in the country. The are also on top of the newest chemos and other treatments that is out there!
The CTCA does NOT replace St Jude or my oncologist! They work WITH them! They work hand in hand to give me the best treatment possible. So, if all goes as planned, I will return home after about 10 days and they will contact St Jude and send my new treatment plan to St Jude to have them administer my new regiment to me. I will continue to do my chemo treatments at St Jude. Then every 3 months or so (maybe even less) I return to Phoenix (I will drive and will be reimbursed mileage) for more tests, scans and evaluations! They want to make sure what they are doing is actually working and if its not, they will adjust my meds accordingly.
This is pretty much all I know for now! I will keep you all updated as much as I possibly can! I don't know how I will be feeling, so if I can not update the blog, I will find someone who can! I am sure I will NOT be feeling as good as I am now, since I am only on maintenance chemo now, not attacking the chemo, just keeping it at bay. So, I am sure the new chemo treatment will be A LOT more aggressive!
PLEASE CONTINUE TO PRAY FOR ME AND MY FAMILY!!! This is a scary but exciting time for us! God has been so good to us and I am so thankful for all my blessings, my friends, the prayers and the gifts we received over the last 2 and a half years! God has held me near to him during this trial. I am so thankful for each day he has given me with my family and all of you! KEEP PRAYING, GOD IS LISTENING!! We love you and you all mean so much to us! NOW IT'S TIME TO KICK CANCER IN THE BEHIND!! (Sorry if this started not making sense, my pills are kicking in!)
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