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!

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!

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!)

JOIN POSH NOW!!

I had to share this!! I would be greedy if I didn't! I started selling Perfectly Posh in September! I went in blindly without knowing much about it! I am excited to tell you that I have made money for my family, new friends and have been able to share my testimony at the end of my Posh parties! God is so good! He is in every detail of my life, including my new business! I encourage you to join my team NOW! The kit is the best one I have seen and there is a new 90 day training academy called "Posh Prep Academy" which walks you through everything and helps you grow your business! It's only $99 to join and that includes over $280 in Posh's number 1 selling products AND the business essentials to get your business going! They have included 2 of every product to do with what you would like, sell one and use one for yourself, use one for samples and display the other, whatever you want to do... Posh will let you do! THIS IS YOUR BUSINESS!!

Go to www.perfectlyposh.us/christianne to JOIN MY TEAM TODAY!! This offer/kit ends December 31st!

A very Happy Thanksgiving!

http://OK... I am a big wimp! I backed out of the MRI. This is the first time I denied a test or any kind of treatment. I prayed long and hard and had a peace about not doing it.  Dr P told me that there was really nothing more he could do for me that he isn't already doing.  So why bother putting me through even more stress by doing the MRI? So I called and cancelled. I decided to try to help my back out a little by cutting down on lifting things, which included my almost 4 year old, who is the size of a 6 year old! She still climbs up into my lap all the time, but picking her up only happens when it is necessary.
So why am I so cheerful, when I am usually a huge grump on chemo days... I got GREAT news today!! Let me go back a couple of weeks.  Last chemo treatment, my blood pressure was through the roof!!!  Like 189/95 high.  I didn't really think anything about it at the time. I have struggled with high bp for a while, so it was nothing new.  I knew in order to have the Avastin, my bp would have to be in a normal range. Avastin causes high bp, so if you start out with high bp, you can imagine what could happen.  So, I go to infusion and my infusion nurse says that she doesn't think I should get the Avastin bc she could not get my bp to lower.  By this time, by body has went into defense mode.  What this means is, most cancer patients suffer with a condition that makes them either very sleepy or very sick when they think about or go to chemo.  I fall asleep! I don't just mean dozing off... Full blown snore fest.  While in the chair, I hadn't even received any form of meds yets, and I was completely out.  I did sort of wake up to my nurse raising my arm above my head while taking my bp and it still wasn't going down. After many attempts of trying everything to get it to go down, it finally worked.  So I get plugged in and I receive the chemo.  I get home and sleep the day away.  That night (around 2am) I feel funny. Blurry vision, slight headache and just weird. I take my bp and it is 198/105! We call the nurses advice line and leave a message and never hear back.  Long story short, after 2 days of calling the dr multiple times with no return call, calling my chemo nurse and the nurses advice line, we get a call back from the dr's front desk.  I answer and she tells me I need to come in for a CT Scan as soon as possible.  At this point, I am on the verge of a mental break down!! I scream into the phone, "WHAT THE HECK DOES A CT SCAN HAVE TO DO WITH HIGH BLOOD PRESSURE?" She was taken back because I am sooooo not that person who yells at someone for no reason.  She tells me to hold on while she talks to the dr.  She says (in a very snarky tone) "Well, he told you not to be surprised that he would order a ct scan if you had a jump in numbers!" My head was spinning at this point... What the heck was going on? Then she said, "Oh and the dr has sent you a new prescription of blood pressure medication and it is waiting for you at the pharmacy." I make the appointment for the CT scan and curiosity gets the best of me. I tell Jon to call back my chemo nurse and ask what my numbers were.  He calls her and she says, "Are you sure you really want to know?" That can't be good! So Jon told her to let us know. She said my numbers jumped from 160 to 201.9 in a matter of 3 weeks time.  So, they again tell us, "We need to see how much the cancer has grown and/or spread."  I have NEVER been so nervous about a ct in all my life. I don't know what made this one so much different than all the other times. But, I AM SCARED TO DEATH.  I do the ct and the tech tells me that they put a rush on my orders and the dr will have it in the morning. The next 24 hours were the longest in my ENTIRE life.  We call the dr 3 times that day with no response.  Finally at 2pm, his head nurse calls me. She said, "Ok Christianne, Dr Paneres says everything looks good! There is no new growth or spreading, so we are going to keep going with the regiment you have been on and we will see you in a couple weeks." I just start crying hysterically on the phone, so much so that I freak Helen (my nurse) out! I said, "WAIT WHAT?"  She said, "didn't you hear me? You are fine! Whats wrong?" So I went on to tell her the whole story leading up to that point and she said, "If I am the one calling you, just know it is good news! I can't tell people bad news anymore, I would end up crying with the patient!" So now I know if dr P calls... that is not good!
Fast forward to today, I go to my appointment and he lets me know once again, everything is good! He says so good in fact that I now only see the dr every 6 weeks instead of every 3 weeks. He said it is pointless to go by my CEA numbers because they are just not accurate for me. So with that I push the envelope a little bit.  I told him my next chemo lands on my daughter's birthday and if I PROMISE to still take my chemo pills, could I please skip my infusion for the month of December. He said YES!!!!! So this is a very HAPPY Thanksgiving and an even better CHRISTMAS! I do not have to go in for chemo until January 7th of 2014! :)

So, I have to brag a little about my Posh "career". I have hit ALL my goals, every month.  I have received 2 awards already and have 2 more on the way.  I have decided that since I am doing so well, that I am pretty much going to just do outside/online orders and only 1 event for the month of December.  If you are thinking you would like to start earning a little more cash, I URGE you to try Posh!  The products honestly sell themselves and they are all natural and safe for everyone. I have 3 parties scheduled for January so far and if you would like to learn more about Posh or want to schedule a party just hit this link!  http://www.perfectlyposh.us/repsites/frm_bridge.aspx?bridge=JOIN&id=4710
YOU WILL NOT REGRET IT! If the link is not lit up and you can't click on it, copy and paste it! :)

Time flies... when you are busy!!

I seriously don't know where to begin... Lets go back to this past summer.  I took the Summer "off" from chemo to be somewhat normal with the kids.  We did A LOT! We went on vacations to the lake, we played at the splash park, 3 Vacation Bible Schools, Knott's Berry Farm and much more! I was only doing my chemo pills which I really have no side effects from.  When the kids went back to school, I had a CT Scan and the dr warned me that my numbers went from the 60's to 160! So, we were expecting there to be growth and maybe even spreading, but it was worth it for the time I had with my kids.  The results came back and everything was the same! It hadn't grown even a little bit.  So he added Avastin to my regiment.  He said I will be having CT's every 9 weeks and I can stay off the chemo that makes me very sick, until my cancer starts growing/sharing. PRAISE GOD FOR THAT!
I have been dealing with a lot of back/leg pain recently.  It is so bad that I have to have my pain pills next to my bed and I take them as soon as I wake up and wait for them to kick in before I can get out of bed.  It is the lower lumbar region. I told the dr about it and let him know I upped my pain pills myself and I was (am) still in pain. He said he doesn't think that it is cancer related.  He said that I need to remember my body isn't what I want it to be and I need to slow down.  (BOY! He just doesn't get me, does he?) He thinks that it may be a slipped disc.  So, I have a 2 and a half hour MRI on Thursday the 24th.  I am really nervous to do an MRI because I am pretty claustrophobic! I hate CT's and I am only in the machine for about 15 minutes! I am thinking of backing out.  I think I may rather live with this horrible pain than do the test! So pray for that for me too please.
My hair... Since going off the chemo, my hair is growing back pretty quickly. In fact, I even just had a hair cut to "shape it up" a little bit.  It was starting to look too Simon Cowell for me! I am going to keep it short because eventually I know I will go back on the chemo and more than likely lose it again. This time it may not be such a shock because it is short to begin with. 
We are still really struggling financially... My mom recently had a tumor removed from her spinal cord. So she can not take care of the kids the way she was before, so Jon is missing more work than ever.  We are over $30,000 behind what we usually are this time last year.  I was sick of sitting by, letting life pass me by and being the cause of my family losing out on so much because I am sick and Jon has to take time off to take care of me.  So, pretty much blindly, I joined the company PERFECTLY POSH! If you are on Facebook, you are pretty much sick of hearing about it from me! Sorry about that, but I just love it and it truly has changed my life! I am doing things I have not ever done in my life! I have actually gone to a store by myself without any anxiety, I stand in front of people for about 2 hours talking about our products and giving people facials and answering questions.  I know God is using Posh for me to reach out to people and give my testimony.  I pray that God always gives me an opportunity during my parties sometime to talk about what God is doing in my life.  I feel so alive doing this! Not only do I get some "me time", I am making money for my family, meeting new people and get to witness to them! If you would like to check out my website and our all natural products, go to www.perfectlyposh.us/christianne So far I have had 2 parties (and 3 more already booked) met 2 goals that the company has set for its consultants, I hit enough in sales that I am getting a promotion and a raise, I have 3 team members who have signed up under me, I along with my sister have a charity event coming up to raise money for a little girl who was born with NKH  and I went to a convention in San Diego! All within the last 40 days! I love Posh and honestly think that God placed it in my lap and great things will come from it!
On the kid front, they are doing well! Caylee has started at Head Start and goes every day from 8am to 11:30am. It is such a blessing because they feed her breakfast and lunch and she is getting the interaction with other kids her age, while getting ready for Kindergarten! She is my little Posher.  She is a real girly girl and can't keep her hands off my products.  For Christmas, I am going to make her a little Posh basket that is just for her.  She loves to try everything out and she helps me make my samples to give out to people! She has not had 1 UTI since her surgery and is such a happy and energetic child. 
Joey, he is still having a rough time with things.  He has been to 5 different counselors.  The latest one was through the school and they called to let me know that HE decided he didn't want to go anymore and she also said there was really no point because she can not get him to open up at all! (Exactly what the last 4 counselors have told us) He is such a sweet boy and he is very attached to me. He is also having a little bit of a hard time with mommy "working".  He knows how to pull at my heart strings and told me that all I care about is Posh and working! I explained to him that I work at home to be close to him and he can be with me the whole time I am working and even help me at times! That made him feel better and he hasn't complained since then. 
Jonny is back in soccer with Jon as his assistant coach! Like Jon needed one more thing on his plate, but it has been awesome for both of them! They are bonding even more through it and they both have an outlet to get their frustrations out! He goes to counseling through his school every Tuesday and he really likes it. He is a full blown pre-teen monster!! Oh my!! I was not ready for it! LOL!! He is at the stage where his friends know more than we do and he knows WAY MORE than we do! He thinks it hysterical when we let him know that we know what is best for him. We get a LOT of.. Well Jacob said.... UGH!! Sometimes its more than I can handle! I just pray and give it to God and explain to him WE want the very best for him and we would NEVER steer him in the wrong direction. Our new dilemma is when and what do we tell him about "the birds and the bees"!?  I know he is still pretty innocent about knowing things in that department so I feel like if we fill his head with things, then curiosity will get the best of him! I obviously do not want him learning from his friends anything we don't want him to know, but I am not stupid and don't want to be unrealistic, that is going to happen if we don't teach him how to respect women first.  Jon and I did a daddy/daughter date and a mommy/son date one night.  Jon brought Caylee flowers and the boys got me and my mom flowers. On our date, I taught the boys to open the car door for women, bring them flowers before the dinner, pull out a woman's chair and be respectful at the dinner table at all times!
I do have a very important prayer request. Our 6 year old next door neighbor, Dylan, was diagnosed with Leukemia! He is having chemo every 4 DAYS! His face is a little swollen from the steroids, he is SO SICK FROM THE CHEMO!! Last night, I was in my room and I heard screaming and crying.  A sound I will never forget.  I dropped everything and started yelling for everyone to run outside something is WRONG!! I honestly thought one of my boys were hit by a car or something! My dad, Jon and I run outside to find Lisa (Dylans mom) rocking Dylan in her lap as he is screaming, "MOMMY MAKE ME BETTER, MAKE IT STOP!!! I AM SO SICK MOMMY, I CAN'T DO THIS!!" I can not describe the horrors of chemo.  Its unlike ANYTHING I have experienced in my life.  She (his mom) was just sobbing and rocking him.  She said every night at around 6pm, he just melts down like this and she doesn't know how to console him.  She thought letting him sit on the front porch and get some air would help him.  I told her (begged her) to take a walk around the block and clear her mind and just get out.  She told me she would NEVER leave him.  I, as a mom, get that completely.  Cancer is from the devil... thankfully they caught the leukemia pretty quickly and he has a 95% chance of being completely cancer free by the end of November! So please please pray for Dylan and his whole family! I am so thankful that it is me and not my kids who are sick! I would do anything to take Dylan's pain away! Lisa is my hero!! She is an amazing mom, she always has been. But to have to endure what they are going through is unfathomable!
Well, I am going to wrap this up, Jon is already snoring away! LOL! I better get to sleep! Morning comes too early in this household!
Keep praying, God is listening and is really keeping us together!! But like the dr constantly likes to remind me, I can be doing wonderfully one day and 2 weeks later, I could be gone! Pray for my CT scans to keep coming back good, pray for my kids and husband to keep their sanity, pray for my MRI and pray for little Dylan! Thanks everyone!!

WOW! LONG TIME, NO POST!!

Oh my word!! I can not believe that I have taken so much time off from posting.  There is actually a good reason for it... spending time with my family and making memories!!

Pretty much I have been just living life!! I went on a friends only (no kids!!!) trip to Las Vegas! My bestie paid for a get away for us and it was a blast! I highly recommend a friends trip to just relax and exhale for a little bit!  I needed it. Thank you Krista, it was a weekend I will never forget. We went on our annual family lake trip to Laughlin, we will be going another 2 times to Laughlin this summer.  Other than that, we have been a normal family again because I have not been too sick since stopping the IV chemo drugs.   I also organized a last minute block party for the 4th of July and we ended up having over 50 family and friends over. IT WAS AMAZING!!!

On the battle front, I am off my IV chemo for a couple months while the kids are out of school.  I couldn't imagine another summer on chemo.  I had not had a break in almost a year.  So, after having my last scan, Dr P said I could stay off chemo, unless I had a jump in numbers.  So far I have not had chemo for the last 3 sessions!!! YAY ME!! My numbers are remaining stable, I am still doing the pills for 2 weeks on,1  week off.  Around the beginning of June, I needed to shave my head!  I had gone to the salon and had my hair cut and dyed by a friend.  It was thin at the time (around mid May), but still doable! All of the sudden, it just started falling out like crazy! I tried everything to keep it.  Special shampoos, sprays, and even a dark brown powder to fill in the bald spots.  But, once there were more bald spots than hair, I knew I had lost that battle! I was SO insecure about my hair when it was thinning, I didn't even want to get close to anyone and actually started wearing scarves and head coverings (thank you Kira, for buying my favorite head cover for me!) I looked like a zombie straight out of the Thriller video!! I talked to the kids and Jon and they were not ready for me to shave it.  Finally after sitting them all down, I said, "Do you honestly all think my hair looks better this way than it would look shaved?"  They all agreed that shaving my hair would look better than what it looked like then. Plus, I think we were all done with my horrible self-esteem and the feeling that it was controlling me!  So, the day came... the clippers came out.  In my backyard with my aunts, neighbors, husband and kids, I shaved my head! Let me tell you, I have never felt prettier than that day!! My hair looked that bad before I shaved it.  We are all so used to it now, that sometimes I forget and walk outside to talk to the neighbors and wont have a scarf, wig or hat on!! Oops! I did scare some of the neighbor kids in the beginning but now they don't even blink an eye when they are playing here.  I doubt if the kids around here are going to remember me as the "mom with cancer", but more like the crazy mom who makes us go home and brush our teeth or do a chore before I can play.  What can I say, I want all children to have good health.  I do it out of love.  Jon makes fun of me all the time about that.  He laughs and says I am the neighborhood mommy! They listen, run home, brush their hair or clean their rooms and I will praise them on a job well done when they get back!  I even had to tell one little one, "OK, its been 3 hours, you need to go home and get a diaper change and then you can come right back!!" NO LIE!! OK! I don't know how I got here, but lets focus... No chemo, No hair, NO PROBLEMS! So, I am just cruising right now. My numbers are not going up or down, my energy level is WAY up.  I am a cleaning FANATIC right now.  I know that soon, I will be knocked back on my butt. So I am trying to get everything done now that I wanted to do for months.

Now onto the home front.... Our prayer (my and Jon's) since the 1st of the year, has been for me to not need a hospital trip for 2013.  Well, so far my prayers have been answered, but maybe at the expense of others.  Since we uttered those words for the past 7 months, we have had quite a rocky 2013 in this family.  Oh I have been in the hospital, more times than I can probably count this year, just as a visitor, not the patient.  In January, (the 28th, my mom and uncles birthdays) My grandma suffered a horrible stroke at a family party and was in the hospital about (maybe even over) a week before she passed away.  During one of  those long days at the hospital, while receiving some tough news about grandma, my mom suffered a minor stroke right there in the hospital.  She has since been in the hospital a total of 4 times (all strokes) since February.  Then, Jonny took  a trip to the ER (the same day my mom suffered her first stroke and my grandmother was still in the hospital as well) because he broke his arm by getting it in caught in the car door.  Then, about a month later,  my cousin was skateboarding (he is over 40, but he still has the moves!) and he fell pretty bad, then he walked around for a while when he finally realized the pain was not going away, he took a trip to the ER.  They told him he had broke his neck. So he was in the hospital (a couple doors down from where my grandma was).He is still wearing a neck brace, even now. Then, in April, we found out Caylee would need surgery for her UTI's. Her surgery was in June.  At least it wasn't St Jude it was performed at CHOC! We got a change of scenery for that one. (PRAISE REPORT... THE SURGERY WORKED AND SHE ONLY GOES BACK FOR A RECHECK IN A YEAR FROM NOW.) The end of June rolls around, kids are out of school, so its time for our annual family trip to the Lake.  Like every year we stay in a hotel in Laughlin,  Well the day we packed up to leave Laughlin, my cousin's youngest son, just barely 1 year old, pulled a cup of hot coffee on himself and off to the hospital he went.  That poor baby went thru so much.  3 hospitals, an ambulance ride and then back here in Orange County for a 5 day stay at UCI's burn center.  He just came home when, one of my other friends (my best friend's sister) had a pretty big surgery,  I couldn't visit her, but I let her know I was praying for her.  Then, just this week my friend Susie, had surgery.  Her surgery was on Monday, July 15th , didn't go exactly how she would have liked, but she is doing well.  Well, after her surgery and once Jon got home from work, we ran down to St Jude to visit her.  Its hard getting to do something as little as going to the hospital. With everyone sick or working it, is such a feat for us to leave the house, we need to find someone who can watch the kids so we can make little trips!! With my mom now having random strokes, she can't watch the kids anymore and we don't want her to ever be alone because if if happens when we are all gone, who would call 911 or run her to St Jude.  So we have to work around everyone's schedules now.  Its gonna get ugly when soccer starts and I am back on chemo. I don't know how we are going to do it! Please pray for that all to work out for us! So back to visiting Sue, we were there hanging out with her but knew we had to get back a decent hour because my dad had errands to run and we needed to be home with mom and the kids.  So we get home from visiting Susie, boys are in bed while our night owl (Caylee) is watching Mickey Mouse. Jon and I start our nightly "Just you and I" nightly routine.  Caylee gets to watch 1 Mickey Mouse Club House before bed.  Then off she goes to sleep, we are watching bachelorette (yes, it could be worse!!) Then, we get into jams, I do my Monday "beauty" routine... brush teeth, wash face, mud masque, under eye cream, vitamin C serum, all over moisturizer with 30 spf (because I am on chemo, my face needs it everyday)  Then onto my nails, took off the polish and started polishing my nails (can't afford to get them down anymore, especially where you pay $50 for a mani/pedi!!)  In the middle of painting my nails. My dad BANGS on the door!!! He starts saying "Get up, Get up!! Mom is having another stroke."  I rushed into her bedroom started trying to revive her.  She was not responding. I started loudly, up in her face saying, I was going to call 911, if didn't start responded.  NOTHING, she didn't even open an eye to acknowledge me.  Then I screamed it in her face a minute later and Jon told me I was being too loud, the kids were asleep.  I could tell in his eyes, he was scared! So I ignored the comment and started yelling in my moms face more to rouse her.  My dad even came over to try to get her to at least open her eyes or wiggle a toe! Then God smiled upon us, I had just gave in and told my dad that we should call 911!! Then my mom started moving her feet then next legs and in that order, her eyes opened.  By the time we got her sitting up she said "I don't need an ambulance, just take me in our car." So off to the hospital she went, with my aunt and I a few minutes behind her and  then my brother also met us there.  THIS WAS HER 4TH ONE! So I stayed with her and then labs and scans all came back good, so she was free to go.  So we got ready to boogie out and I told my mom regardless that its 3am, I am going up to see Susie, so my aunt wanted to go with me, so we went and visited her and said good night. Its only July, we have 5 more months in this year! Please pray with me for the safety of my loved ones to stay out of the hospital as well as keeping me out also.

That about sums things up for right now.  Jonny leaves for his sleep away summer camp for a week on Monday.  I need to get him packed tonight.  He has attended 3 VBS programs and starts soccer soon.  Joey is doing well on his meds.  They are a life saver.  He sticks to me like glue though.  He will spend the night away from me to spend the night with his cousins (Jordan and Roman) He refused to go to 2 of the other VBS programs, but I made him go to the one at our church.  So, we have been spending a lot of time together.  One day, both of the other kids were busy, so I took Joey on a date to Starbucks.  (Because of my anxiety) I have never taken just 1 kid out somewhere. He was such a gentleman, he opened doors for me, went up and got the drinks (which he had the guy put his name on) and we sat in Starbucks and just talked for a little bit until it was time to pick up Caylee.  Now onto my maniac!! Miss Caylee is now in dance class! (One of my bucket list items is to see my daughter in dance and have a recital! She loves it!! She asks everyday if she can go to dance! She is so cute in her leotard and tap shoes. Her surgery went "beautifully" as the surgeon put it.  He said she healed up exactly as he hoped.  Now there are no excuses why she can't be potty trained.  SO THE HAMMER IS COMING DOWN ON THAT LITTLE ONE.  She will be fully potty trained, by 30 years old, if I have anything to do about it! LOL!

My prayer requests are to stay off chemo for just 1 more session!!!  If the dr makes me have it next Friday, it will mess up my plans for our next vacation.  Also pray that Jonny has a great time at camp, learning about God and getting closer to Him and that he returns safe and sound.  Please pray for Caylee to finally potty train, she is so hard headed and pray her UTI nightmare is really over.  Pray for Joey's anxiety.  Pray for a peace to come over him that it is ok to be away from me and that he has the courage to do things on his own.  I think he may be a little co-dependent using his brother as his crutch. Pray for Jon's work to get busy.  We are having a rough time financially still, even with him back to work more with me being off chemo.  I thought we would start getting the checks we used to get and we have not been seeing those numbers still. Lastly pray for our family to have safe trips to the lake. The past 2 years our family (extended) have not had the greatest luck out there. Thanks for listening and keep praying, GOD IS LISTENING!!