Dea’s Story

Site created on January 18, 2023

Welcome to my story, our family's story. We are using it to keep family and friends updated as we navigate through this health journey. We appreciate your prayers, words of encouragement and hope.  Our hope that we might help someone else or bring awareness to such a rare cancer. Thank you for visiting.

Newest Update

Journal entry by Dea Jordan

Survivors Cheer
Ring the bell,
Three times well,
It's toll to clearly say:
My treatment is done!
This course is run!
And I am on my way!

5 Days until the final treatment. I can't tell you how many times tears have surprised me this week knowing that Monday is coming, and I will finish 6 out of 6 rounds of chemo. I am not sure if the tears are signs of how weary I am or excitement that I survived them, I figure it's probably both. I have tolerated the chemo honestly so well and the side effects are very minimal considering what they were projected to be. My white blood cell counts have stayed within normal limits, hemoglobin etc... its all good. 


What symptoms do I have: 

  1. I am bald, no eyelashes, I have to draw eyebrows on (see picture or eyebrow kit and Rogaine, although it definitely is nice not to have to shave) 
  2. Very dry mouth
  3. Taste and textures of food have changed.
  4. I am hungry a lot (steroids). I am definitely ready to get back in the gym.
  5. Extreme hot/cold hands and feet. (Changes in seconds)
  6. Sleeplessness
  7. Crazy, crazy dreams all night. I feel tired even when I rested.
  8. Light Nausea (they give you plenty of meds to keep that at bay, usually.)
  9. Extreme fatigue is the worst thing I think. Some days just getting from bed to the chair is all I can do. That is usually just in the first week and it slowly gets better over the next two weeks just in time to go back to chemo and start all over again! Like when a wave knocks you down and you try to get back up, wipe your eyes, and WHAM another one knocks you down, salt in your eyes, sand in your mouth, a little sand rash... you know what I am talking about.
  10. I can't remember what I am missing..... OH YEAH, CHEMO BRAIN!

CHEMOTHERAPY IS BRUTAL,THE GOAL IS PRETTY MUCH TO KILL EVERYTHING IN YOUR BODY
WITHOUT KILLING YOU!
I'M STILL HERE

I am so glad that I am almost to my last treatment, but it is hard to be excited because I know so many people are truly hurting. Miscarriages and those suffering loss, people facing their own cancer diagnosis, infertility, dealing with aging parents and spouses, children leaving for bootcamp and headed to college, kids and teachers are testing (which I think testing is so abusive in it's current form), people suffering with physical pain. There are so many reasons to just keep quiet about my triumph, but isn't that what the devil wants… to duck tape our mouths?  Shouldn't we find joy and gratitude in the midst of it all! I think that is what hope is for? Knowing that better days are ahead, no matter what this crazy world, full of sin, throws at us. Without a firm foundation we would surly fail.


I am so excited for the upcoming birth of my second granddaughter, Caroline, I am so ready to hold that sweet baby and soak up how precious life is and grateful for us to BOTH be alive. We will be two miracles snuggled up together! 


My beautiful daughter, Amber, who has pretty much put her life on hold for me to have room to get well even as it overshadowed her pregnancy.  2023, well 2022 really,  has not been kind to us, God knew she was going to have to be stronger than the rest of us, her drive and tenacity is unmatched and while the world may not see the sacrifices you have made baby, I see you, God sees you and I am so grateful. Mimi can't wait to meet Caroline!

Katlyn visits every chance she gets,  I was diagnosed shortly after she moved to Charleston. She keeps me entertained, brings so much joy and laughter to such a crazy time! I am so proud of her finding her own way. We are looking forward to celebrating your 25th birthday! I must have had you at 9 haha

Troy has rearranged his whole work schedule to make sure he never misses  one of my appointments and works twice as hard because of it! His coworkers and bosses have not just been understanding, but truly thoughtful & encouraging for both of us! Not a day goes by that they don't check in or send a card or remind us that they are praying.
 

I find myself holding my breath the closer I get to my next scan on May 24th. I keep saying "I just can't wait till I get back to normal!" but the closer I get to it, the more I realize that it will never be the same, and I am not sure it’s supposed to. When my girls would struggle in a situation, I would parent them by asking. "When you are struggling with a situation at school, work, personal, or in your mind, whatever it is. Ask God what you are supposed to learn from it so you never have to back to it and do it again. Don't let your struggle go in vain, make sure God knows you want to know what's on His mind!" Taking my own advice, how can I not be changed; how can life not be different? I have been asking God to show me what he wants me to learn, what He wants me to say, how does He want to use this to magnify His Glory. While He has not answered that completely, what I do know is I will be ready, I will jump at the opportunity  becasue he's not finished with me yet.

Prayer: I am asking for continued prayers, while I am excited about Monday being my last treatment, I still have to push through for a few weeks, as the poison leaves my body and I start to regain my strength. I ask for prayers for my family as they navigate, work and family. Pray for "Sweet Caroline" as she arrives the end of May first of June and Amber and Tyler as they add a precious new little one to their family, for Presley to adjust to having a sister, and as we celebrate life & Katlyn's birthday. I am going to be really real and ask that y'all pray that my hair grows back super-fast and more beautiful than ever ... no really, I believe in being specific in how we pray. Pray for all those I listed above that are hurting. For me as I receive my last treatment on May 15th and that my scans are clear and I am still cancer free on May 24th. Amen.


I am looking for suggestion on ways I can put a spin on how I ring the bell so if you have any suggestions LMK, but I pretty sure I am going to ring the bell and RUN LIKE HELL! (Please Lord forgive my humor, I blame it on the chemo)

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