Wednesday, August 18, 2010

Its become REAL!

Sooooooo alot has happened over the last few days. Monday I did my gene testing. That conversation made my head hurt. It was like a very deeeeeeeeeeeeeeeeep science class. I should have my results back in about 3 weeks. Yesterday I had the joy of drinking some really yummy stuff and having a CT of my abd & pelvis. I suggested that they find a way to add some vodka to it. They could make a Barium martini! MMMMMMMM LOL! Over the next five days I'm going to be tortured a bit.  My CT of the chest showed a 1 inch nodule/lesion on the left lung. They are not sure exactly what it is so I will be having it biopsied on Monday. OOOO so DON"T want to do that biopsy stuff again. They assure me they will make it comfortable for me. I'm thinking yea right,  before or after the big needle goes through my chest to my lungs. Tomorrow I will be having a out patient surgery to have my port placed so that it can be accessed for chemo. Give me a second... here come the tears.......................................................... Something about this stupid chemo stuff makes this all so hard and SO REAL! 
Saturday I will be taking a visit to nuclear medicine for a bone scan. Sounds like fun huh?
My insurance has decided they want to be jerks. They will not cover or approve the PET scan. They say its exploratory. They had also denied my CT of the Abd & chest. They say only if it were for a surgical purpose or if I was stage 5. BUT, my doctor was so kind to call those amazing insurance people and have a very nice and calm conversation with them and to my surprise they have kindly changed their minds about covering some of these tests. Isn't that so WONDERFUL! :)   Yeah ME!!!!  I get to have more tests.
The oncologist and surgeon have decided to switch some things up on me. They are thinking that I will do chemo first and then the surgery. And I would like to do it the other way around. I want this stuff out of me ASAP!!!
The talk of chemo has me in pure panic and sadness. I'm thinking I should go and get my hair cut and start looking into wigs. My hair is so much a part of who I am. I know its just hair but its easier said than done. I really really really feel for anyone who has had to experience this. Its a very emotional thing for me and it hasn't even happened yet. Just the thought process of it gets me :(

Yesterday I spent most of the day with my grandparents. It was a nice trip. She found it necessary to tell me about all the health issues shes had over the last 80 some years. She should of wrote a book about it. Oh wait she DID! She literally brought out this huge hard covered book and started reading it to me. I couldn't believe it. Not what I really wanted to hear about. Alls I could do was think about what else is in store for me.  Anyway she took the kids shopping and they had a blast with that.
Today was the first day of school for the kiddos. Christian is a freshman and my princess is in 4th grade. I can not believe how fast they grow up.

Jesse and I are trying to choose laughter over tears.
The other day when I had my gene testing done we were talking to the kids about what that could mean for them should I have a mutation of either the BRCA1 BRCA2 and or p53 gene. Mariana says wait so your telling me those comfy jeans I like to wear could be bad for me. AHHHHHHH LMAO!  I told her..Don't worry hun I'm an adult and I could barely understand it. I spent some time trying to explain the word GENE to her but she wasn't getting it and I wasn't doing a good job of making it understandable to a 9 yr old. She keeps asking me- Where on your body is your gene?
So I'm giving you all some homework. How do you explain genes to a 9 yr old?

4 comments:

  1. First of all Mandy, you and your family are in my thoughts and prayers. From what I know about you and from what Shannon has told me, I believe you are a strong willed woman who will definitely make it through this and kick the cancer's ass. I know 2 friends at work who just went through the whole breast cancer ordeal. 1 had the gene and ended up with the double mastectomy and reconstruction and is doing great - cancer free! Stay as positive as possible. Allow yourself the occasional emotional breakdown when needed but don't let it linger. If you need anything... a ride, babysitting etc. .... don't hesitate to give Shannon or myself a call.
    OK, as far as the whole "explaining genes to a 9 year old" homework assignment thing. That's a tough one but here it goes....
    OK, lets say you have a mommy cake and a daddy cake. Each is made up of all kinds of different ingredients that determine what the cake will look and feel like. These ingredients could be flour, eggs, milk, salt and sugar etc. The ingredients in the cake are like the genes in our body.
    Now when the mommy cake and the daddy cake have a baby cake, some ingredients from the mommy cake and some from the daddy cake help make up the new baby cake. This means that the new baby cake may share some of the same types of salt or sugar ingredients as the mommy cake.
    Now, if some of the mommy's "sugar " ingredients are "not so healthy" then it is possible that the baby cake may be also now share some of those "not so healthy" sugar ingredients (or genes). Testing can be done to determine if the baby cake does share those bad ingredients or not. If the baby cake does have them, then treatment can be done so that it doesn't effect the baby cake in the future........... OK, I know that is probably the stupidist ananlogy/explanation ever but that's all I could think of for now. It would almost be better to write it out on paper using X's and Y's. Sorry I just compared you to a cake! Now you know why I teach the older kids! I better think of something better before I have to give Hunter the whole sex talk in a few years!
    Anyway, take care and stay positive!
    ---- Dennis

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  2. Kim Jakubik-ShoemakeAugust 20, 2010 at 5:53 PM

    Mandy - reading your post brings tears to my eyes for you, but then makes me laugh with your humor! I hope you and Jesse can continue to find the humor in things - it will help you get through it all. God Bless you, and anything I can do to help you during this journey while your "kicking cancers ass!" let us know! Helping with the kids, ride to the doctor, pick up things from the store, or someone to hang with you while your going through all this - whatever, just give me a call! Your in my prayers - God Bless you! Kim

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  3. Dear Mandy,

    I can grasp how you are feeling in this whole situation. I have been by my best friend's side for the past 5 years through her battle against Lymphoma. The hair thing is very difficult, and I know because I made the decision in 5th grade to shave my head as bald as I could get it to help understand how my BFF feels. We were baldies together :) For some people this whole cancer thing just crushes them, and it's hard to make it through, but you have such an amazing attitude towards this and I KNOW that you are strong and you will beat cancer! Mandy, you are such a wonderful woman, and I will be praying for you every night.

    I guess for the whole "gene" thing, I would start by telling her that she is made up of millions of little tiny cells that contain this teeny tiny instruction manual called DNA that explains how to make and build and grow a Mariana. haha. Then you could explain that each chapter of the DNA instruction manual is called a gene. And sometimes the chapter (gene) is printed wrong in the manual and there is a little typo that can cause some problems.

    Well I hope that little explanation helps! :) I will keep you in my prayers,
    Ari Castronovo

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  4. Dennis,
    I will gladly be compared to a cake! :)That was very good. Let see if she gets it now. Thanks for your concern. You better get going on that sex talk when your done figuring it out I could use it for Jesse. :)

    Kim, I'm glad your laughing as we are tooo! It helps.

    Ari, Thanks hun. Your very brave for doing that. I'm not sure I could do that even for my closest friend.

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