Monday, November 29, 2010

Today I babble

I can't even begin to speak in true sentences. First I shall be positive; things I am grateful for: The smell of cookies in the oven. That my girls are still young enough to say I LOVE YOU more times in a day than I breathe. The way my oldest looks at me for approval as she moves through her day. The way my youngest curls in my lap and tries to be sneaky. The way my shoes fit. The moments that Cancer didn't come up in my day. The moment when my hair look perfect in the mirror. The way it feels to be held when your upset and no one knows you are but, you. The way he looks in a flannel (no one said that would be sexy and still I am thinking that it shouldn't be even though it still is).  The way the girls look holding hands sleeping on a blow up mattress in the middle of the floor. The way I feel like the old me when I swim. I am thankful that I still get to be thankful.

I am looking for a trail for my brain tumor. I do not know if there is one out there that is worth the risk or if I am just kidding myself thinking that one is magically going to appear now that I am desperately hoping for anything that will help. Unsure how to feel about that.

My body is tired today. I have been feeling very emotional lately. I just can't seem to find the even spot. Where did it go? I used to feel so secure but, I am unsure if that is because I was alone and when your alone you have nothing to really be unsure of? Does that even make sense? Not so sure of it. I have been finding myself crying for no reason when I am driving. Or looking at my bank account wondering what is going to happen. I know that no one said Single parent and Cancer = money in the bank and they were right. I just did not know how right they really were. I have always been so capable feeling not capable is really hard. I can not explain to you how strange that change feels. That when the bills come in you have to just take deep breathes and realize that I am fighting for much more than just an item this is my life. It is worth every dept, every bill, every bad dream but, really how long can I stay on top of this with out losing footing?

It is so hard not to push every living thing out of my life. I am fighting to keep a connection with the girls, with Sean, and my friends but I struggle to keep on top of those things. I am struggling to want to talk, hug, kiss sometimes I just want to be alone. Well lets be honest most of the time right now I wish I was alone. Maybe not the kind of alone you are thinking of but, the kind where you do not have to be you. You could be about anyone. a coffee shop where no one knows but you can still chat and be friendly. Is that so wrong to want a escape? I think I have let go of most of my connections because close contact is so hard to handle. I find myself alone one this equinox and there is no way off. Everyone wants to come but I just want them to find another. I have known this about my self for many years I push away anything that gets to close. It is hard to believe that I am still holding on to this.

I bought a stuffed dog from Macy's today.. It sang and made me laugh.

Wednesday, November 24, 2010

A way of speech.

As things have change through out my life. I have began to understand that a back story is in order

at some point during any story so today you all get the speech. Mostly because I do  not think I have told it.

  My name is Kayla O. and I was diagnosed with Cancer on May 5, 2006 at 3pm; one month after having my second child.  The shock was overwhelming completely disarming. I was once again amazed at what can change in seconds. My life took a turn that I would never forget that day it was awful change that reworked my entire life. I was a 21 year old girl with two very small children at home and a divorce on the rise. You can only imagine how heartbreaking this news was.
   The days passed in a bitter daze. I was to afraid to even say the word cancer let alone talk to my family about it. So over a week passed with out a word from me. I sat in silence wondering how I was going to manage my life. Was I going to die? Was it going to be awful? would I beat it on the first round? I did not even know what I had yet I was wondering everything under the sun.
  I was diagnosed with uterine cancer on May 24 2006. I went under surgery the following day, they burned the inside of my uterus  and started radiation the next day. After a couple months of feeling good about my cancer and being cleared of all worries. I was sent home to feel wonderful forever; this was not the case though. I started having dizzy spells, stomach problems, and headaches that I ignored and ignored. It did not take long before my stomach hurt so bad that I ended up back in the hospital. They found 38 tumors across my body. It took two months to figure out what was really going on. Two months that I found myself in tears every day, wondering what the hell was happening to my body. After three different hospitals we found out I had STS. Soft Tissue Sarcomas. It also came with a sentence that I was not ready for.... This is terminal; there is no hope for complete cure.  Let that sink in for a moment... Imagine holding your not yet 6 month old child in your arms while your 2 year old runs around the room and you hear those words. The divorce papers are signed and now I am alone with two small children, divorced, and terminal. I did not think it could ever be this bad. I moved to Salt Lake in September of 2006 for treatment at Huntsman's followed by a intestinal, facial, breast, stomach cavity surgeries. One after the other followed by weeks of radiation... I was so tired I couldn't moved and was still attempting to parent. Going on and off liquid diets, no food, some food, 200 hundred oz. of water a day to no water. It was insane, unbelievable and totally not controlled.
       Years past with out much change until September of 2009 when I moved back to Idaho to be closer to my family. I thought I was done with surgeries and radiation; after finding a brain tumor and a neck tumor that could not be removed.  I had lost hope in most things my self, my friends, life. Things happen all the time that you can not explain. That the universe does not give you answers for, that there really is no hint of what is happening other than it just is. I am sure I have said it a million times but again I am thankful for my cancer. Everyday it changes me into a person where I can be in this moment not in the next, that I can look beyond what most people see when I see a person. I have learned that it is not wrong to love everyone you meet and saying it does not make you a bad person. I have learned that I love to cuddle everything I can cuddle. I want to lay my head down in someones lap and look into their eyes and tell them how wonderful life can be. Cancer gave me a lot... Even as it takes away my life it is still giving me a better one.

Wednesday, November 17, 2010

Smells like...

I had three radiations this over the last few weeks due to us trying to attack a tumor that wants to eat my spine.  Does that not sound great?
    Have you ever walked into a radiation lounge? Before the doors even open you are hit with this smell that can penetrate your entire body with a vengeance that you did not even know was possible. It is a personal assult on on every sense that you have. You are first overwhelmed by smell, then by color because it is like running into a five year old painting. Rainbow splattered everywhere gigantic walls of yellow, blue and of course pink; they truly believe you will suddenly you will feel better just at the site of it.  Which on its own is a form of adult abuse not to mention it does not take care of how the reality is still the same. You still have cancer and you still have to be microwaved to a provocative color of red and or maybe just a rash.
   I have to admit that is not where I thought I would be again. I had allowed myself to fall into a place where I could just be. I could just ignore the facts of my conditions. I could settle with death because I had created this place where I no longer had to have cancer. I had found a way to avoid thinking about it dealing with it being cancer. I could just take a play at being healthy, there were days where I did not consider the seizures even cancer related. I had found my own personal play ground.... My life. Because is that not what life is suppose to be? Is that not what every one else get to receive? A playground of dreams, ambitions, loves that do not come with the contingency of doctors appointments, missing memories, and of course cancer guilt. Can not forget cancer guilt. Because when you are doing a activity that some one else thinks is not a good thing to be doing because it is dangerous to your health. You get cancer guilt because you are really not well enough to do a lot of things however doing them is what makes life. All of this made it a lot easier to just sit on the back burner and wait for things to happen to me.  When doctors say you have months to live and you live on another year while they look at you and say again you have a few months to go.... It is crazy when the world is against you. You can watch your self turn inside out and then settle in just letting go.
       So once again... I am trying to beat the realities of this and fight a little longer.

I am loving the "POSSIBLE" side effects of radiation.
The side effects of radiation therapy to the brain or neck may not occur until two weeks after the start of your therapy. Some people experience hair loss but the amount varies from person to person. Hair usually grows back once therapy is finished.
The second most frequently reported side effect is a skin irritation. The skin around your ears and scalp may become dry, itchy, red or tender. It is important not to attempt to treat this side effect on your own, but rather to seek medical treatment as soon as it occurs. Fatigue is another possible side effect of radiation therapy. The best way to fight fatigue is to make sure to get adequate rest, eat a healthy diet, and rely on friends and family for support. Your normal energy levels should return about six weeks after you finish your therapy.
Edema, or swelling of the brain, is also prevalent among individuals undergoing radiation therapy to the brain. If you experience a headache or a feeling of pressure, report your symptoms to your oncologist. You may be prescribed medications to help reduce brain swelling, seizures or to control pain. When chemotherapy and radiation therapy are given at the same time, patients may experience more severe side effects. Your doctor can suggest ways to ease these uncomfortable symptoms.
Other possible side effects include:
  • hearing problems
  • nausea
  • vomiting
  • loss of appetite
  • memory or speech problems
  • headaches

What are some of the possible risks or complications?

Radiation is a powerful weapon against cancer cells, but sometimes it kills healthy brain tissue as well—a severe side effect called radiation necrosis. Necrosis (a late effect of high doses of radiation) can cause headaches, seizures, or even death in a small number of cases. This can occur six months to a few years after treatment. However, the risk of necrosis has declined in recent years with the advent of the newer, targeted radiation therapies described above and the emergence of powerful imaging, brain mapping, and information technologies.
Other complications include:
Just a FYI in the last week I have heard of three of us having Seizures after Rad... Possible or Probable?
Thought you may enjoying looking at my tumors!!!  

Monday, November 15, 2010

Koda is SIX

What happens to time? Does it pass by you in such speeds that only the old seem to notice or maybe they just take note of such passing's. I amazed at how big she has become; how aware she is of the things around her. How things change from infancy to six. She has become her own person. She is shy and caring and amazing. She looks out for the better of everyone. Dakota is the daughter that everyone wants. She is polite well mannered and always wanting to please. I am proud to be her mom; proud to have the chance to see her grow. I could not imagine not having her as my child.
   The day she was born was the clearest day in November of 2004. We arrived early to the hostpital with our nerves on high. We were about to become parents. No knowledge of what was to come of the trails that would face our family. That day the only thing on our minds was her. That magnificent baby that was full grown with in me. She was born just as pretty as she is today chunky and awe inspiring. The biggest blue eyes you have ever seen the reach deep inside your soul; they know you... She knows you from the minute she meets you.

I love you Dakota and I am proud to be your mother. My wonderful first born.

Sunday, November 14, 2010

A Wonderful Mess.

My heart sets heavy tonight. I have been struggling to keep a hold of my emotions over the last few days.  My friend Brett recently became terimal. He spent the last year avoiding life and not living the way he wanted to. He was in love with a woman but, not pursuing her because of his illness.  He some how found the courage to get married to this woman right before he was going to die. They ran away and committed their lives to one another. The courage of them both makes me cry. The ability to let go of all of those fears and just be in love. From either spot it is a hard feeling to allow your self to have. I can not even imagine how they felt in those moments. How they felt when they openly decided to run away in three days and get married. To spend what is ultimatily a very short married life together. The absolute love and trust they must have for one another to make such a impressive decision. To open their hearts to the pain that will in the end overtake them. To watch the one you love die before you so soon after committing a life time to each other. The look in their eyes says it all. They love each other from a depth of their souls that people rarely find. A peace of them so lost with in each other that it will never be found. When they stare into the eyes of one another you see that piece hidden deep with in that only lights up for the other. The love they share is life altering even to those far away.
   I cry when I think of the commitment to each other.  I have not been able to tear down my own walls for years. To watch two people in such a similar position be so courage's with their hearts makes me feel like I have a chance to make it.  That maybe I too can let down those ways and allow myself to be hurt, allow myself to hurt someone else. 
   My heart sings with hope and praise for this inspiration couple. The world moves around people like these. I am in love with love again. 

Welcome to the top.

     Sometimes getting to the top is only half the adventure. Coming down is a new adventure all on its own.  I have found that pushing my body to do thing that it has never done is not the hard part. Coming down from those places are.
      I went hiking in Moab in hopes of climbing six shooters. The approach was a challenge that I did not know if I was ready for.  I made it all the way to the top. The picture above was taken half way up the mountain.  Coming down was twice as hard as my knees gave out under the pressure of my forty pound pack. I am going to have to work on my down hill climbing skills that last mile was brutal.
       I also found myself jumping out of a plane. The way up not so bad... getting out of the plane well... like I said down is a lot different. Falling was irremediable a feeling that is indescribable. I am amazed everyday by what there is out there to feel... Yet so many choose to feel nothing.  I went to City Of Rocks after and climbed my first real rock. I slambed myself ten ways to side ways and still made it to the top. I admit I did not exactly have a good time. It was rough going but, I am happy I did it. I enjoyed every moment of it with out having a good time.  I do not know how this is possible but, it is.