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:
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.
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.
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.
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
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