After many months of people asking me if I was going to write a book about my experience, I began to realize that my cancer journey is truly a niche situation.
I wasn’t sure if anyone would buy a book that I wrote, and I don’t even know what I would write a book about. I also didn’t love how close-ended a book seemed. Write a book, and then you’re done.
I love interacting with people.
That’s when I started to think about creating a blog, something I could continuously add to.
Interact with people.
Continue to inspire.
Continue to help others.
I blanked on a name for a long time. I didn’t want it to have “cancer” or “leukemia” in it, because I wanted the blog to be able to continue long after my leukemia journey was not taking over my life, as well as inspire those who aren’t on a cancer journey.
I know some of you are probably thinking, “well won’t it be affecting you the rest of your life??” Of course it will be! But right now, as I’m starting the blog, I have only worked 4 weeks since I was diagnosed 26 months ago.
Insurance called it “a failed attempt to work” right before my first relapse.
That made me feel realllllllllly great when they told me that…
Right now, I don’t have much going on(thanks COVID); and at some point, I will be working again, COVID will be in the past, and my life will feel a lot more “normal”. Or I should say, I will be living my “new normal”, ON TOP of the post-COVID “new normal”.
I have looked back on things that I have learned during my cancer journey. I’m not talking about any tangible skills:
I’m talking about the stuff you can’t really pinpoint or put on a resume.
Within 13 months, I had spent 120 nights in the hospital. That is 4 months just to emphasize that… My longest stays were 36, 26, 25, and 15 days. I had several that were under 10 days.
Let me tell you, when you’re in the hospital fighting for your life, you have a heck of a lot of time to think. I’m not sure what you think that you would be thinking about, but I’m pretty sure you’re not craving the nights you closed the bars down at 2am, it’s not the materialistic item that you were so excited to purchase, and it’s not the place on your vacation that you couldn’t wait to take a picture of to post on Instagram.
I’m definitely not saying that I haven’t been “happy” by doing all 3 of those things, but that’s not what I was looking back on and craving to remember “the good ole times”.
Yes, I did look back at photos of recent vacations and the 7 weddings I attended in the year leading up to being diagnosed.
Yes, I did look back at pictures of me out at bars with friends.
And yes I did make a few *splurges* on materialistic items while I was in the hospital. You quickly learn that the material items only spark joy for a very short amount of time.
You begin to realize that you look at the photos of you and your friends at the bars to remind yourself of what it was like to be with your friends and laughing alongside them. #COVIDsucks
You look at the pictures from vacations and weddings to feel the happiness and excitement from that moment in time.
It’s the feelings that you miss and crave.
The things that actually make you truly happy.
The things that fulfill you.
The things that keep you going.
The things that fuel your soul.
I started to learn what that meant during my first battle with leukemia, and it became even more apparent when I was fighting it for the second time, and even more for the third time.
Between fighting for my life the third time in 15 months, and navigating through a global pandemic, you tend to lose yourself.
“It’s so funny how so much of ‘finding yourself’ in adulthood is simply getting back to who you were and what you loved as a child.”
Unknown
Physically, I’ve lost my hair twice, I’ve lost my eyebrows and lashes twice, I lost 40 pounds and A LOT of muscle – I have since gained 15 back and couldn’t be happier about it!
Because I have killed off my immune system 12 times in 19 months, I’ve had to be in isolation for MUCH longer than the COVID pandemic & quarantine.
I’ve missed three ski seasons, my family trip to the beach, one of my best friend’s bachelorette weekend(I’m IN the wedding), a few weddings, and countless times just hanging out with friends.
*I keep mentioning weddings, because 1- I have no control of when they are and 2- I have been one of the very few people that have missed them, not because I didn’t want to go or because I had another event, because my immune system was not allowing me to go. That is completely different.*
I was someone who was always on the go, meeting up with family and friends, and doing activities. And my life came to a screeching halt on Wednesday November 14th 2018, and again on Thursday August 8th 2019, and AGAIN on February 20th, 2020…
Just when I would have gotten the OK to start living my “new normal” after beating cancer for the 3rd time, COVID shut the world down.
Luckily, I have many hobbies that can be done from home or still be done with a small group of people while social distancing.
I am trying to thrive and feel like myself again with those activities.
Some I physically don’t have the strength or endurance to do.
Some I don’t have the attention span or mental energy to do for more than a short amount of time. #chemobrain
Slowly but surely, I’m regaining myself.
Or maybe it’s more like finding out who this “new me” is.
Who I am post cancer. Cancer doesn’t define me, it’s just part of my story.
They say you shouldn’t look back, or only to see how far you’ve come.
And I do agree with that; however, I love to look back to remember what makes me feel like me.
The “old parts” of me that I want to bring to the “new version” of me. And those are things that fuel my soul.
The things that put the biggest smile on my face.
The things that make me get butterflies because I’m so damn happy doing them.
The things that I can’t stop talking about.
The things that make people think “Yupp, that’s Christie!”
I chose the name “Fueling Your Soul” because I want to help people fuel their souls every day.
To realize how important that is, and why it should be a priority in your life.
I chose the present participle “fueling” to express that it is a constant action, and to choose to continually work at it.
“You can’t go too far from your core, or you will lose yourself.”
Amy Schumer
So join me on this adventure to continuously choose things that are #FuelingYourSoul !
Love you blog! I’m 42 and was diagnosed with AML with Fllt3 mutation in May of 2020. I then had leukemia cutis and was fast tracked for a Bone Marrow Biopsy in October. Thank you for sharing your experiences. I can relate to so much of what you’ve been through and it’s nice to know I’m not alone!
Wow needed this today!!!! Thank you for showing me what determination looks like 💜 you set the bar so high!!