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!