My First Blog Post

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credit: Steve Ko

Thank you for migrating here with me to my new blog.  My cancer journey continues to grow and develop and each phase brings me new inspiration, hope, and purpose.

Four months ago, when I learned that my slow-growing cancer had transformed into double hit lymphoma I was very discouraged.  I think it was the fact that it is such a rare diagnosis that there isn’t a lot of data out there showing positive results.  And when I would “google” it, I kept seeing the words “poor prognosis” along with a lot of medical mumbo-jumbo that left me feeling overwhelmed and depressed. Feeling alone and afraid, I started recording my experience on Caring Bridge and over time it has been such source of inspiration for me to know so many people care and are following my journey. You can check out my previous posts and catch up on the roller coaster we’ve been on here:  My Caring Bridge website

The other day I went out on Facebook looking for the Double Hit Lymphoma Foundation and I was shocked to see there sprawled on the banner… that they are shutting down as of November 1, 2017.  I only learned of this foundation about 6 weeks ago when Melody, our social worker at Mayo Clinic in Phoenix, gave me a simple form to fill out for a grant… and then 2 weeks later we had a check for $1000!  This is a great resource for DHL patients and I am sad they are closing down.

dhl found

I have received the most incredible support of friends, family, colleagues, and acquaintances from around the world.  I started my journey very publicly with a post on Facebook asking people to prayers when I was first diagnosed.  I had no idea the love and support that would follow over the coming months. People have been lifting up my family in prayer and making us feel like we have a whole TEAM of people going through this with us.  I am forever grateful for this, and as my story continues I decided to start a blog so that perhaps others like me, who are “googling” double hit lymphoma, can find something more upbeat to read other than all the scary stuff that’s out there.  Perhaps someone is going through a similar situation and can post a comment, ask a question, and connect with us other “double hitters” out there.

Hope 4 Kay Group
This is my Idaho Falls extended tribe here sporting the Hope 4 Kay t-shirts!

 

What’s happening with me today?

Since my DHL diagnosis, I have undergone 2 rounds of R-EPOCH, 1 round of IVAC-R, and another 2 rounds of R-EPOCH.  In total I have finished 10 rounds of chemotherapy.  I was released Tuesday from the hospital and today is Friday.  Yesterday I woke up with a fever and my body was sore and achy all over, but after some Tylenol, I felt much better and managed to get in a little walk with Ozzy (our little dashchund) and my mom in the evening.  Today I woke up with more energy, and walked Ozzy down the street and back, only slowing down on our way up as I could tell my heart was working a little bit hard and I was short of breath.  Oh, how I miss feeling “normal”, but looking forward to the next few weeks when I will gain my strength back and I am not belching like a “Bubba” in a hot dog eating contest!  (Chemo kills the good flora in my gut and gives me the worst gas… sorry if that’s too much information!)

My next PET scan is scheduled for Aug 11 at Mayo in Phoenix.  Dr. Miklos (at Stanford) is not anticipating tumor shrinkage compared to my last PET… which is actually a good thing.  In order to be eligible for this CAR-T clinical trial, my disease needs to be progressing or unchanged.

Hmmm… FINALLY, I feel like I am in a win-win situation.  If the tumor is shrinking, that is a good thing.  If it doesn’t then CAR-T baby here we come!

As of now the slot could be the week of the 22nd, or the 29th of August.  It seems these things are so fast paced and constant moving targets from week to week.  So I have been living day to day, which certainly has its freedoms, and I have learned to just enjoy the moment.  Today our three girls come home and we get to be a family again.  It’s been a month since we were all in one place… I am excited beyond words  to be together again.

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Yes, we are Cowboys fans!

I read something last night that resonated with me and I wanted to share with you,

“Happiness is a choice.”

With so much uncertainty, it is really nice to be in control of my choices.  Choosing to be happy, optimistic, and grateful helps me feel like I am somewhat in control of my completely “out-of-my-control” situation.

Onward and Upward!

“Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable.  Think about things that are excellent and worthy of praise.”  Philippians 4:8

10 comments

  1. Congratulations on this new blog!!! Awesome! And, I hope it’s an easier way to share information with EVERYONE! As always, I love to read your words of strength, optimism, and faith! It’s truly beautiful and inspiring!!! And, I completely agree – happiness is a choice! And, I love the part about choosing the things we CAN control in a life of so many things we can’t control! You make such a difference in all of our lives Kay! Praying for you every day! Much love sent to you!! Enjoy having the whole family together again!!! YAY!

    Liked by 1 person

  2. Thank you for documenting your journey. I know it has been so long since we have seen each other;however, I think and pray for you each and every day! You are such an inspiration and I agree, Happiness is a Choice and Positivity is power. Hugs from San Diego.

    Liked by 1 person

  3. Even though being your mom, I have been with you most of the time during this journey, knowing first hand what you have been going through day by day, I still enjoy reading your blog. You are a good writer. You are a very strong person both in your faith and your outlook of life. You are such an inspiration to me and people around you, I am so proud of you. I know we can win this battle together. Love ❤️ you!

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    • Thank you Mom, I coudn’t do this without you and it humbles me to see how much you love me every day. You’ve taken care of me for 45+ years and still going. You’re the best, and there aren’t enough words to express how much I love you.

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  4. Kay, I have been thinking of you, your fight, and your family. Hope the kids all had great days back and school and please let us know if our family can help in any way beyond prayer!

    Liked by 1 person

    • Thank you Karin, keep the prayers comin’ girl because they are working!! I love that the kids are back in school because they are absolutely thrilled to be with their friends again!! Will let you know if we need anything!!! Thank you!!!

      Like

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