I AM MORTAL

A few months ago I was at a R3 class. It is in the very early stages of what developing the program for Adolescence and Young Adult Cancer Survivors. Whenever I say AYA this is what I am referring to. From this one meeting I told the wonderful coordinator that I would also like to be on the committee for Notes of Hope. I had no idea what I was going to be getting myself into. Just in the last month, I am seeing these other survivors on a weekly basis and we get to know each other better and learn from each other experience. It is awesome. We are reminded that every time that we get together that we are mortal. Just like that, it has come to me. We talk about the new normal. Heck, I talk about that everyday. I look down at my legs and wonder if they are going to heal. I hope so, but it might just be the new normal. My tongue looks like it is cut on the side, yes it does hurt. I have had it mouth GVHD for probably close to a year. I wish it would heal, but it seems to be the new normal. I am mortal and I get reminded every three months that. It is less than 10 hours away from getting my next bone marrow biopsy. I don't have the anxiety that I would get days before, just the night before. I put on a face like everything is going to be fine, because this is the new normal. Inside of my head, I am freaking out. Is this the time they are going to tell me that it has come back? Are they going to tell me that everything is fine? I hope, I stay positive, I keep on living. I am not going to let these biopsies hold me back from living out my life. 

When you lay in bed, what is the first thing you think about? Your job, you child, what you are going to do for the day? I wake up and think, this is going to be a good day and remind myself that attitude is everything. While these test take a toll on me mentally, I will overcome them with my happy thoughts, my loving thoughts, and my overall passion for living. 

It has been over 2 and half years since I was diagnosed with cancer and yet it consumes my life everyday still, this is the new normal. Tonight when others were talking about how their lives have been effected by cancer, it reminded me why I am so passionate about spreading the word. I can only barely think about Colin and the loss of his life without starting to get teary-eyed. It angers me that I feel the need to fight for both of us. I want to let other people that are going through cancer that they are not alone. It isn't a death sentence, but this isn't a perfect world and some lives won't be spared. I can not live with the guilt of one of the few that survive. I don't want to be your hero, I want to live like everyone else. I hope to inspire people to be better people but most of all I want to inspire myself to be a better person. I write to release my inner thoughts because it helps me deal with the new normal. If I didn't release it somehow I would be more crazy then I am. Starting in September I get to start taking a writing class that put on my AYA OHSU. So excited to see where my writing can take me. 

So, I am going to end with this..."Like" our page, Notes of Hope. The concert is going to be November 3rd at 7pm at Albert Rose Theatre. $20 plus service charge. Tickets will go on sale probably around the 1st of September. The stories will touch your hearts and the concert will be icing on the cake. 

Here is the link to FB page. https://www.facebook.com/notesofhopepdx

Also, the website for the page, www.notesofhopepdx.org

Until next time. 

Jenene

New name new blog

Alright kids I am back to write. I didn't really give it up but there were a few events that need to take place. So who thinks that I should publish what I write? How does a person get the message out to other cancer survivors that are in the young adult age range? I wish I knew the answer, so for now I will continue to write and put things in to a book at some point. Maybe I can make that my next goal?? Who knows??

Where do I start...live is good, really good. I am so in love with an amazing man. Like you didn't know I already didn't think that. hehe!

Health - well I am having to get bone marrow biopsies every three months. It at least puts my mind to rest for three months after they get done. But I am really not too fond of it starting feel like the "normal" thing to do. Hmm?? Why you might ask do I need to do them so often, because I am a rare case, not like so rare that they don't know how to handle me, but am out of the "norm" when things happen. With the type of Leukemia that I had, I would be getting bone marrow biopsies every 6 months anyway. I am showing with in the margin of error some leukemic cells in my DNA. I can't go into too many details because it is hard for me to understand. Think about it this way, they take a poll and at the bottom of it say +/- margin by certain percent. That is what my body is doing.
Next, my legs, I am not even sure if I have posted the pictures on Facebook, but I have cause trauma to legs, that then led to my bruises turning to GVHD of the skin. I have to put ointment on my legs twice a day and hope in 9 to 12 months it goes away. I also have some in my mouth that is a little painful but is manageable. Hello new me! I sometimes have to roll my eyes at the things, I go through, I think to myself, really this is happening! Grrr....

I am growing my hair out. It is the longest it has been since I lost it. It so wavy! I am loving it.

My title of my new blog is Energy and persistence conquer all things. I am going to break it down for you.
Energy - equals - vitality and intensity of expression
Persistence -  equals -the quality that allows someone to continue doing something or trying to do something even though it is difficult or opposed by other people
Conquer - equals - to take control of (a country, city, etc.) through the use of force 
These are the word that I live by. Find strength through whatever you may, but have strong words to make it better.

I have lots to write about but for now, I will go to bed since I don't want to be up to late and I need to go and fold clothes.

Much love to all.
Jenene