TBI?

Total Body Irradiation Scan 12:45 D100

Thats what was on my calendar yesterday.. and to be completely honest I couldn’t even begin to tell you what I thought it meant.  So at 12:45, my mom and I sat in the waiting room with curious minds and decided we were going to google what the heck this was. ‘Google Images’ was not very good to our minds let me just tell you that.  All the pictures were so different, but really to me just looked like a bunch of aliens in boxes.  All we could do is laugh about it though.. like everything else because what else are you gunna do?

“Ms.O’Neal, we are ready”

……..

We follow one of the nurses back to a room, and as a new patient I basically have to tell my whole life story which is as fun as you can imagine. My mom has to add in about 15 things because I just simply can’t keep up with it all. After that is all done with we wait for the doctor to come in…. Still having absolutely no idea what this “TBI” thing is.

Side note: Why in the world do doctors nock on the door before they come in? Like what do they think I’m going to say .. “Don’t come in, ever!” ?? Yeah, I wish.

Anyways, he comes in and explains what this TBI’s purpose is and what the possible side effects are. LONG STORY SHORT this treatment is to kill all the Leukemia in my body in the locations that my chemo may not be able to get to. However, since it is full body there are MANY possible side effects and the body is very sensitive to it.  Guys, I’m not kidding.. He literally named off every. single. organ/body part. and mentioned a side effect, including “you may lose your hair” and of course me and my mom busted out laughing…. then “there is a slight chance it can cause cancer down the road”.. I wanted to get up and walk out at this point. Not really, but really.

With this treatment most commonly being used with older men and women it is really hard for them to know how it is going to effect me years down the road. Is this scary? No. 5 years ago it was because I had a cancer most common in 60+ men an they said the same thing.. Each year that goes by, I just get more awesome and awesome! By the time I’m 60 I’m going to be a rock star with a million dogs to love:).. Ha.

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After he was done with what I call ‘lecture’, he asked if I had any questions before I went back for my scan.. And of course I HAD to ask if google images were accurate. He couldn’t really give me an answer, besides its easier to just show you than explain it. TOUR TIME!

So yesterday was just my body scan for my radiation that begins September 12th. I will go twice a day for four days to prepare for transplant! They took me on a tour of the radiation room so I didn’t feel so clueless. Not sure if it made me feel better or worse, but there were no aliens!

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When he said it was easier to just show me, he wasnt kidding. That green thing is what I lay in. It started out as just a flat bean bag type bed. I lay down, they wrapped something around my neck, had me cross my arms over my chest and bring my knees up. I could only be 60 inches long head to toe. They got me situated and began taping me down so I wouldn’t move. They turned a machine on and his bed starts forming around my body. I felt like a caterpillar getting wrapped up in my cocoon, except not so graceful. It was the weirdest experience. Now for getting out……. This thing is what I have to get in every time I go for radiation so it has to stay formed perfectly, and how I was going to make that happen was beyond me. I did it though! ( My whole hospital gown may have come off, but that doesn’t matter).

Yesterday was a very different experience for me and there are going to be many more to come. But thats what makes life fun!

-XO Kara

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Y’all, It’s just hair.

5 years ago when I was first diagnosed with cancer, naturally my first thoughts were about loosing my hair. (Were people going to stare? Were people going to make fun of me?)  To be completely honest, I didn’t know much about cancer except that it magically made you bald…. Well come to find out, thats far from true. Not everyone who has cancer is bald and not everyone who is bald has cancer. My doctor was sure to inform me that there were going to be a lot of side affects to my chemo but hair loss was not one of them. Wahoo!

You would not believe how hard it was for people to believe I had cancer, but wasn’t bald or wearing a wig… Like uh I promise my hair would look a lot better if I could just throw on a wig everyday..? Its my REAL hair.

Anyways, a few things have changed recently…

In May when I found out my CML had changed into AML my first thoughts weren’t about loosing my hair this time… I was in so much pain, my first thoughts were to get me  ANYTHING to make me feel better. Whatever that something was, I wanted a lot of it and as soon as possible. And I got it. That something was chemo. (Yes, I thought my doctor was absolutely insane when he told me chemo was going to make me feel better…. But he was right, imagine that..). This chemo was a lot different than what I had been taking for the past 5 years and this time hair loss was a side affect of it.

Was I anxious about loosing my hair? Yes. Was I afraid? No. I just wanted to know more about the whole process I guess but there were defiantly more important things going on at the time to even think about it.

About 3 weeks after my first day of chemo my hair started coming out. I was still in the hospital at this point and my bed would just be covered in chunks of hair always. (Yes, chunks. SO NASTY). My head throbbed (like when you have a really tight pony tail), but all over. I had iced my head for about a week before I decided I was so over it. I wanted my hair GONE.  The little bit of hair I had left, my friends shaved off and that is when my bald life began. #baldlifeisthebestlife

 I was blessed with a family friend who had everything I needed to help me feel like “myself” through this part of my life without hair.  A beautiful real hair wig was donated to me through a company who supports childhood cancer but I think my mannequin ‘Barbie’ wears it better.  As much as I try to be, i’m just not interested.  It’s not because i’m in denial or don’t like it, it’s because this bald head is ME for now.  To this day I don’t allow cancer to define the way I live my life, but I do believe this is all a part of my journey.  I wake up, look in the mirror (check on my peach fuzz growth) and say , “Heres to another day of kicking cancers a**”. And then go on to do my thing because its truly… just hair. that grows back.

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Me and my girl, Barbie.

Yes people stare, and no I’m not offended. Im a girl who is bald, I probably would stare too.

Ive also gotten…

“Don’t let anyone tell you, you aren’t beautiful” ~ “Keep fighting, I know that hair-do very well” ~ “I love your bald head, that is such a confident hair style” ~ “You should just keep shaving your head when it starts to grow back” ~ “I just want to give you a big hug, I will be praying for you”

And it all, always makes my day.  The love and support I get from people everyday keeps this bald girl going and I mean that with all my heart.  One day I will probably choose to wear a wig or hat when it starts to grow back lookin’ wacky, but until then.. This is me!

Ups and downs

So this week has sent me on an emotional roller coaster to say the least.. Definitely a lot tougher than others! Finding out my donor was not able to donate anymore has left my mind wondering in so many directions.. Then getting my new calendar for transplant, knowing it was going to much more intense was scary for me. Still, I never doubted being able to get through it. My dad was going to give me his awesome stem sells and things were going to be okay!

Yesterday, my mom got a call saying she needed to get tested to see if she’s a possible 50% match… Now they are unsure if they will be able to use my dad due to him having Melanoma in the past. So maybe my mom? Who knows. Ugh, cancer sucks a lot. Nothing is for sure now, but I’m finally learning to take it day by day. God loves me and he is giving me the strength to get through every day.

With all of that being said… My heart goes out to all of you who have been put in the registry for Be The Match. I hope one day you are able to save someones life by being their donor. People everyday, around the world are in need!

-XO Kara

“Trust in the Lord with all your heart…”

Yesterday should of been the start of my senior year of college.. But there will be another day for that in the future!  I wish all my friends the best this year, but don’t have to much fun without me 😉  (I’ve tried and tried to figure out how to make “5th year senior” sound good, but I don’t think anyone will fall for it). Anyways, I never thought i’d say it but I can’t wait to get back to school!

Today my transplant coordinator informed me that they are not able to use the donor anymore… I’m not exactly sure what the reason was, but some testing came back and it wasn’t compatible with me.  UGH. Good news is my dad is a 50% match, and he will now be my donor.  Not many people get to say their dad saved their life, but I do! This changes a few things, I will now need full body radiation with my chemo and the recovery will be a little longer but thats okay. My transplant admission date is still set for September 8th and I am more than ready!

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Life sometimes throws things at you that you aren’t expecting or necessarily ready for, but God always has a plan. All you need is trust.

“Trust in the LORD with all your heart and lean not on your own understanding;” Proverbs 3:5

-XO Kara

My Dr. Gossip ft. Aug 18th

My Doctor appointment went well yesterday. My counts are finally starting to recover from my last round of chemo, wahoo! I did have to stay and get platelets but hey, at least I didn’t need blood also.. (I dread the days I have to get both). I am still being treated for my CML (oral chemo twice daily) and my doctor just upped my chemo dose a few weeks ago.  This has thrown my bilirubin off a little so he may lower my dose again (…and I wont complain about that). Side note: I really have no idea what a bilirubin is (maybe something to do with liver), but it’s a fun word to say.

Anyways, feeling pretty good besides a little bit of pain in my jaw and hips from my bone marrow trying to do its thing.. GROW. Can’t complain!

Yesterday I got one of the top 10 most exciting news of my life.

I GOT TO MARK MY CALENDAR WITH A TRANSPLANT DATE.

September 8th is my admission to begin the transplant process.

The transplant will take place the next week along with my birthday, so basically its going to be a whole week of partying! 😉

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So from now until then, I ask for prayers for my donor and I to keep us both strong and healthy! It is just right around the corner. EEEEP!!!

-XO Kara

Mary Poppins Bag

So I just got this super cute bag to take with me to all my doctors appointments and I wanted to share with you what I manage to stuff in it! Since my doctors appointments last anywhere between 1 hour to 8 or 9 its important for me to come prepared every time otherwise I may lose my mind with boredom. I bring my laptop, iPad, a book (I hate reading so I guess thats just for looks..), my agenda, headphones, hand sanitizer, and of course some snacks… So yes, this is my Mary Poppins Bag! If y’all have any sudjestions on things I could add to my bag I would love to hear.

Off to the doctor I go! I will keep y’all “posted” !

-XO Kara

My Prayer for today
“The Lord will fight for you, you need only be still.”-Exodus 14:14

Hello!

Wahoo, my first post! So I’ve created this blog to keep everyone updated on my journey to becoming cancer free! I plan to post medical updates and anything else my heart desires I guess Lol.  I’m excited, I hope you are too!

P.s-I don’t know what I’m doing or how good I will be at this “blogger” thing, but i’m giving it a shot.

-XO Kara