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!











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