The Not Knowing..

I Am horrible at writing in journals or keeping track of things that I want to always remember. I always say oh I need to remember that, or I better write this down, but I always forget! That is pretty much why I only write on this blog every few months! I am trying to do better!

As I was looking back at what I have already written about I have decided I want to talk about one of the worst things about my experience, and that is the "Not Knowing".. Seems kind of like a weird thing to be considered "The worst" but trust me it truly is! It is something that comes and goes through the experience I believe of any kind of trial. The "What is wrong with me?" "Will i be okay?" "When will this be over?" and so on.

When I was first showing symptoms of something being wrong it had happened right after my family had taken a trip to Cancun. I started having the one and only symptom of my cancer, which was, ITCHING! yeah weird right? It started with my palms and bottom of my feet. I couldn't control it, i would scratch and scratch and scratch. I even started taking scissors to the bottom of my feet and scratching my feet by scrapping them on the hot ruff cement! The itching spread over a couple weeks to my legs and arms and up through the rest of my body. I wish I could express how utterly agonizing the itching was! I would wake up in the middle of the night sitting up in my bed scratching my legs till they were bleeding.

During this time I was only a 9th grader and missed most of my Freshman year because my itching would keep me up all night and there wasn't anything that would help. I began to see a dermatologist since we figured it was a skin problem since well it was my skin that itched! I saw a dermatologist for months, we did dozens of test, blood work, I even got treated for scabies two separate times thinking that was the thing causing the unbearable itching since we had recently gone to mexico. But as the months passed I continued to itch more and more. I was no longer sleeping and was crying all the time from exhaustion. They decided to put me on antidepressants to help me sleep. Well guess what it didn't really help me sleep but did cause me to break out into bruises all over my body. So here I am a 15 year old girl who is missing her freshman year of school covered in cuts and bruises all over my body with absolutely no idea why or what is happening to her!

The itching went on for almost a year! I was in the "Not Knowing" phase of finding an illness for just as long. Being in the "Not Knowing" is truly one of the worst experiences of my life. I truly thought i was going to be in this agonizing pain for the rest of my life. I didn't want to live if I was going to continue like this forever. I remember at one point I was crying in my room bawling hysterically praying that this pain would go away or that I would die already. Going through this and not having a single clue of a reason why was making me go insane.

The time came when my dermatologist decided I needed to go up to the University of Utah Hospital to go through this round of doctors that get together to see "odd cases" I saw over 30 doctors in 1 hour. I stood there in a hospital gown covered in cuts and bruises as doctors asked questions, and poked and prodded at me. I had come to one of the lowest points in my life. The doctors ordered us to get a bunch of different test done. One of the test just happened to be a CT scan. We went to another hospital to get the test done and decided to go out and get some food. We were at the mall in salt lake when we received a phone call that something had shown up on one of the test and that we needed to go to the Primary Children's Hospital to the 4th floor Oncology department. At this time my parents and I are completely oblivious to what the word Oncology is. We get to the hospital and go up to the 4th floor walk into the department and I being the child at heart that I am go straight to the coloring table and begin to color (Yes I was 15). My mother starts to look around and seeing the beanie hats and the pictures and starts thinking "uh oh... this is not somewhere we want to be."

We finally get called back to the room and that is when I finally was able to get out of the "Not Knowing". (I wrote a blog post back a few post about what happened when we found out I had cancer if you haven't read it and would like too). Even though the news was not anything close to what I would have wanted, finally finding out what was wrong was like someone had lifted 1,000 pounds off of me. Like I could finally see a little bit of my future. Sadly the "Not Knowing" does come back when you go through something like cancer.

When I first started treatment I didn't even know what chemotherapy was. I didn't know what it would do to my body, or how it would effect my body long term. Luckily as time went on I slowly began to know so many things I had questions about or just plain did not know.  I found through my experience that the "Not Knowing" is the scariest part of it all. Not Knowing if I was going to live or die, if I was going to be able to have children if I did live, or if I would ever be the same. The questions haunted me throughout my whole experience. But as time went on during everything, I had so many people supporting me during all my "Not Knowings" that they kept me from going crazy over them. I had so many people praying for me and so many blessings given to me that they slowly began to take the fear and the "Not Knowing" away. I began to just trust in my doctors and trust in my faith that everything was going to be alright. I was finally able to kick the "Not Knowing" to the curb and just "Know" that everything would work itself out. It was a struggle and many many tears were shed, but I even now have been able to accept that no matter what happened or happens that getting stuck in the "Not Knowing" mentality will only make any situations more painful and difficult.

I hope that this all makes sense! Thanks for reading!

No Reason To Be Ashamed

As I was thinking of what I should write about next I wanted to continue with my story in order, but I had an experience this week that impressed me to talk about something I am not very proud of. Feeling ashamed and embarrassed. I know some people might not understand how this could be connected with my story, but it played a huge role in the way I felt.

This last Sunday my mother and I had the opportunity to talk to a very remarkable young girl who was diagnosed with leukemia this last year, and her amazingly strong mother about our experience and talk with them about theirs. As we were talking I had so many feeling rush back to me as I looked at a mother who you could tell loved her daughter so much, and a beautiful, bald, incredible and positive daughter. It made me so happy to see that this girl had absolutely no shame in having no hair, no fear in telling people that she is sick, and that she had a constant smile on her face as we talked about the horrible things she has been going through. It made me wish that in my experience I had felt that same way, but that hadn’t been the case.

If you already know my story, you know that I feel like I had cancer for a reason and I wouldn’t trade it for the world. That I tried to stay as positive about the trial that was given to me, and I never once questioned if I was going to live or die cause dying just wasn’t an option. I fought cancer with a smile on my face and tried very hard to not let people, other then those very close to me know the feeling I had inside that I was very embarrassed of. That I had been ashamed and embarrassed that I was bald, that I was sick, that something was wrong with me. Yes, I know how stupid that sounds, but I know I can’t be the only one that has felt that way. I was only a 15-16 year old girl who cared what others thought of her. It pains me now that I have grown and matured that I ever thought that way, but I did.

The second time I was diagnosed they wanted to put a port (that is like an iv that is surgically put into your chest right by your heart and you have ports that hang out) and I fought it and fought it just because I didn’t want people to be able to see it. Luckily there was another option that I found was easier to disguise, but it made things for me a lot harder. I feared that people would think I was some kind of freak or mutant, which now I know would not have been true. I spent so much time trying to make so people didn’t know I had cancer, when I should have been looking to people for support and love.

I had an experience in one of my classes where a student next to me asked what was on my arm (where I had my pick line wrapped in a skin colored wrap). I remember not wanting to tell him cause he would think differently of me and he would know that I had no hair and that I was sick. I get angry with my younger self for caring so much about being bald! Bald is BEAUTIFUL! And don’t ever let anyone tell you otherwise. I only let a very small handful of people see me without my wigs on and I wish I could have just accepted the way I looked because wearing a wig is a huge hassle and took away so many things I could have done. (like swimming and four wheeling). 

I do feel that in a small part of the way I felt was justified because the few times I did try to do things without my wig, I would get weird looks, or no one would talk to me. So in part I feel at least back when I had cancer people weren’t sure how to deal with someone they knew being bald, or being sick, that they sometimes made me feel the way I feared people would think of me, like a freak or a mutant.

The real reason I wanted to write this post is for those people that might feel the same way. If you are someone who does, or you know someone who does please remember or tell him or her, being sick or being bald is NOTHING to be ashamed of! Like I said bald is beautiful! People always told me I was beautiful when I was bald, but I didn’t believe them, I felt ugly and disgusting, but when I look back at pictures now I truly believe I was beautiful. I truly believe that I shouldn’t have tried to keep my sickness a secret from everyone I should have been sharing my experiences and looking to people for support. And please oh please stay positive. I know that staying positive helped me through this trial more then anything else could of, but that is a whole long story for another time.

Also if you know someone who you think this may help feel normal, or might help in anyway please do not hesitate to share it with him or her. The reason I am writing these posts is that in hopes it might help someone going through a hard trial like I had gone through.

Thank you for reading!

January 4th- The Day My Life Changed

       Every year when this day comes and goes, so many memories flood my mind and remind me of the things I have been through. Today marks 9 years since I received the news that turned my life upside down. I remember so clearly the words the doctor spoke as she said “you have something called Hodgkins Lymphoma” and in my young and unknowing mind I had no clue what was going to come after those words. “It is Cancer”.  As soon as that word came out of the doctors mouth I became numb, I had no sense of filling for a brief moment, I was 100% empty. I remember hearing my parents talking to the doctor about a couple of the details, as slowly what she had said began to sink in. I remember bluntly saying “am I going to loose my hair?” she turned to me and said “Most likely yes”.  Me, being a 15 year old girl, this felt like the worst thing that I could have ever heard. Tears started practically flying out of my eyes as she continued saying what was going to happen over the next few weeks/months. From this point on my mind pretty much shut off, it was an overload of information for my young and simple mind. I don’t even remember leaving the room and walking through the hospital. 

        Next thing I remember I was down in the parking lot and my parents where on the phone calling and letting everyone know what had just happened. I remember calling my closest friends crying hysterically telling them that “I had cancer” even now typing these words 9 years later it still seems like a dream, like it never really happened, that I didn’t go through chemo for 3 months have a great 6 months clean just to have it come back and do another 6 months of chemotherapy. Even though I experienced those things, I still some days feel like it wasn’t me who went through all of that. Like it was just a book I’ve read or a movie I have seen. 

      After leaving the hospital and having not eaten I remember we had decided to go eat some dinner before we started the long drive home. My parents and I sat in a booth at Denny’s red eyed and crying while waiting for our food. I remember seeing my dad crying and feeling so angry that I was the reason he was crying. I remember feeling so much fear in what was going to happen. I had spent the last almost year searching for an answer to what was wrong with me and cancer, well that was not even an option in my mind. But here I was with a mass the size of a grapefruit in my chest and 2 small grape size masses in my neck. In cases of cancer I was extremely lucky, even though it took a year to find, it still had not progressed into my blood or bones. Another reason why it was so hard to find since it had not shown up on any of the blood work.  

      When we arrived home it was late and I was exhausted from crying. I lay in bed crying and crying until I finally sleep wrapped around me and kept me safe from all of the worries and fears that were obliterating my mind. I woke up the next morning in a haze, my mind trying to decide if the day before was real or a dream. Then it all set in like a pile of rocks falling on top of me as I realized once again that I had cancer. It was a Sunday and in just the short time of finding out the news to driving home, the ward had prepared to have a ward fast for me. I truly believe that this fast gave me strength. I to this day do not know how I made it through the next 3 days without loosing my mind. At this point I still had no idea what chemotherapy was. I didn’t know how it would make me feel or what the next 3 months would consist of. But somehow I made it through those days and was blessed with getting to meet my beautiful niece Cloee the day before I was to go back up to Primary Childrens to start treatment.  Then the day came….