Wednesday, January 23, 2013

The Fight Continues

Sixteen months ago I was diagnosed with Lymphoma. Time is passing by me so quickly that sometimes I forget to breathe. As shocked and petrified as I was then, I still feel the same way now.
Last Friday, January 18th, I received a PET scan to follow the three months of Brentuximab treatments. Dr.s and staff at the UCSF medical hospital had high hopes that this anti-body conjugate would put me into remission and allow me to have my stem-cell transplant I desperately need.
There is something us cancer patients came up with, a term to define all the stress and anxiety one feels before a scan: Scanxiety. It consists of: heart racing, headaches, clenched jaw, uncontrollable crying at times, leg shaking, rude outbursts and other annoying unsettling things your mind comes up with. I had a lot of scanxiety leading up to my PET scan. It truly is an awful feeling not knowing what the outcome will be. Although I have never had a clear scan before, something in my mind kept telling me that this was it! This was going to be the one to tell me good news! As I lay in the tube motionless, I kept repeating my positive mantras in my head: I am cancer free, I am healthy, I am strong!! I felt so wonderful this time around. There was no doubt in my mind that I did do everything possible to rid my body of this cancer!
Yesterday was my appointment for my results. I couldn't help but to cry most of the day leading up to the appointment. I then started to doubt myself, thinking the 'what if's'. Finally the time came. The Dr. said this: Well, you didn't have the results we were looking for but you did show some improvement of 40%.
 UGHHHH! I just wanted to scream, run down the hall way, down the street, get into my car and drive, never coming back! Instead I cried while listening to what they want to do next.
More chemotherapy! Three more months of intense treatment that could cause heart issues is all I heard at first. Then they dropped me with another bomb! I now no longer qualify for Autologous transplant, where they use my own stem cells. I now need a donor for a Allogeneic transplant. They explained that because I have not reacted well so far to anything they have thrown at me, my cancer has become persistent and stubborn, and if they were to go ahead and use my own cells I most likely would relapse soon after it was done, because my immune system is not as strong as they would like it to be. I sort of giggled when they said 'persistent and stubborn' because it sort of was like karma just hit me in the head and said "see!! that's what happens when you are stubborn in life!"
So now I need a donor. I only have one full brother that can potentially be a match, Jacob. He is my life line right now. They will test him with a simple blood draw to see if his tissue and cells match mine. I am hoping it will be easy and he will be my match. If he isn't then we will have to search for a match throughout the world.
I am trying to stay as positive as I can and thinking of the good things that are going to come about. I want to make it my mission and inform people that there are thousands of patients needing help! Not only can you donate blood or organs, you can also donate stem cells and bone marrow to save a life!
In the mean time I will be staying on track with eating healthier, exercising as much as I am able, practicing being in the moment, extreme patience and letting go of fear, and of course undergoing more chemotherapy! The fight continues!!

16 comments:

  1. You are an amazing inspiration! i was diagnosed in late December 2011 with HL stage 2a and was officially in remission August 2012. i completed radiation after 6 months of abvd. i'm sorry for all that you have been through but you are so strong. stay strong and stay positive!!

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    1. thank you so much for the encouragement! I am so happy for your remission!!

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  2. You are strong and persistent too! Hold on to hope and never give up. We hope that your brother will be the match for your upcoming bone marrow transplant. You can do it! ~Ann, The Lymphoma Club

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    1. Thank you so much ann! If it weren't for you and the lovely ppl I have met through the lymphoma club I know I wouldn't be so positive and a fighter! For that I thank you from the bottom of my heart!

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  3. Your shirt says it all!!! Wishing you the very very best!!!

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  4. You are strongest person I know. I wouldn't trade you for any "healthy" person in the world. You have opened so many peoples eyes to the horrors of this world and shown that no matter what life throws at you , you never stop fighting, you never give up. And when we complain about our lives and how horrible they are we need to take a step back and realize, that we need to cherish every moment of our lives. Thank you for being such an inspiration, not only to me but to the world.

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  5. I'm going to share your blog with others to help get thew word out! You are strong and sound like an amazing girl! I will keep all my fingers and toes crossed for you that your brother is a match! I wish i could donate but am also a cancer survivor so cannot :(

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    1. thank you so much for taking the time to read and share my blog i appreciate you so much! congrats on being a survivor!!

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  6. Stay strong! I'm having my first case of Scanxiety.....(I am triple negative breast cancer)....quite the oxymoron. I, and the Docs are optomistic. I need to hear it's all gone. I will keep you in my prayers...... Your blog is inspiring....... keep it up! I'm sure it's therapeudic for you also... LOVE the shirt :)

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    1. thank you so much! I am rooting for you also! good luck on your journey!!

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  7. Cierra,

    I hope some day soon that you beat this once and for all. I am not familiar with what you have to go through physically, but emotionally I understand. I was once where you were ("we want you to go through either two more months of chemo or six more weeks of radiation").

    You are travelling a different path than I did, but hopefully soon you will get to hear the word "remission."

    Paul (22+ years in remission from HD)

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    1. thank you paul i really appreciate your kind words! and congrats on your defeat! 22+ years is amazing!!

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  8. I have shared your blog to get the word out for Bone Marrow Donation. Some of my friends joined when the Red Bull New York Professional Soccer Team had a drive. An opposing team player's wife needed a match. I will contact them to see if they will do this again. Also, this would be a great senior project idea if someone needs a far reaching service project. I would love to feel what it must feel like to save a life. I can not register as I am a recurring Hodgkin's Disease survivor of 23 years and also Breast Cancer survivor of 5 years.
    Stay strong,
    Cathy

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    1. Thank you Cathy for sharing!! That is amazing! I'm really excited about the drive! Hopefully lots of ppl are willing to donate!! Thank you again for taking the time to listen and to share!!

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