Hello. It’s me.
It’s been awhile. Too long.
Writing has always been a tremendous outlet for me. Writing has been the best way for me to work through my thoughts and feelings. Writing gives me perspective. I truly appreciate those who take the time to read things I’ve written. This blog, for instance. It’s not always easy to read. I’m trying to “keep it real” and bring you with me through this crazy life of mine.
Keeping it real, in regards to this blog, is difficult at times. The memories are still raw. They’ve been buried deep for a long time. I knew going into this that it would be difficult, but I had no idea just how difficult it would be. There are 10 drafts of upcoming blogs… the stage plays are picked out and put with specific parts of my life. Most of these drafts were started 3 months ago. These drafts haunt me at times. The emotions, memories and things learned swirl in my head, but they are just random words. I cannot seem to corral them into cohesive sentences. I’ve been lost. I’ve lost a little hope.
The past 18 months I have spent being tossed from specialist to specialist. The toll from my drug trial continues to take much from me physically. These past 18 months I have been diagnosed with several diseases, and so far most of the initial diagnoses have been retracted. Each specialist looks at my history and get so hung up on the amount of arsenic I took, along with the other chemotherapies, and go directly to the worse case scenario. Here’s a hint of things I’ve been diagnosed with (remember none of these are correct but the emotional toll for me and my Core Four has been great): dementia/early onset Alzheimer’s, permanent vertigo, Crohne’s Disease, kidney failure, seizure disorder … We are now working through a possible diagnosis of MS. My favorite recent test was a 3 hour MRI. That was a hoot! 😶😋 One doctor ordered a blood test to check current levels of arsenic. The phlebotomist looked at the order and very sweetly asked if I was ok. She looked so sad. ”Twas a bit awkward until I figured out she thought they suspected my husband was trying to kill me. 🤔😬😂 I assured her that wasn’t the case and gave her some of my chemo background. She was so relieved she almost cried.
Survivorship is a funny thing. Truly. My life must look so weird to people. I forget that most people don’t joke about arsenic. 😎 Survivorship changes, morphs, and is different for each of us.
I’m not writing any of this to cause concern. I’m still the quiet and meek chick you’ve known. 😇🤥 OK, I’m still the spitfire that you’ve known. Going with the flow and constantly saying “It is what it is.” Yup. That hasn’t changed.
The change came in a quiet manner. It snuck up on me like The Unexpected Guest (see a previous blog post on him). My hope was slowly fading. I’ve spent over a decade trying to get better, to feel healthy. Wow, that’s a long time.
Then something pretty miraculous happened. My hope returned. It felt like watching Kristen Chenoweth sing, “Thank Goodness” during a performance of Wicked. That song speaks to me. Great lessons in that song. Powerful. Life changing.
What happened? I met a fellow survivor of APL via the Leukemia and Lymphoma Society’s Instagram. A tangible connection of someone who not only survived this wretched disease, but is thriving. The world of APL has evolved so much the past 10 – 15 years. APL used to be a certain death sentence but now it has a cure rate around 90%. That’s beyond exciting! Research. Drug trials. They are important to our fight against cancer. When I started the drug trial in 2004 my oncologist said, “It may be too late for you but what we learn through this drug trial may save the lives of people who come after you.” That “who come after you” is no longer a concept, it’s tangible. Oh, how it has been a balm to my soul!
This young man is Dustin Reidesel. He and his wife are pretty fantastic. You’ll want to read his blog. He also hosts a podcast, Cheeto Dust, which I’ve listened to. Dustin is an excellent voice for Millennials. As a mother to two practically perfect Millennials I can honestly say that listening to Cheeto Dust has given me a fresh perspective. It’s been a gift!
Dustin and KT Reidesel
Survivorship was something I felt I had to do alone. That’s changed. It’s a vulnerable place to realize that. It means sharing more of myself. Not easy for me.
So what have I learned? No one is alone. We don’t meet people by chance. Those who we meet, even if for a moment, are there for a reason. I need to be quiet and listen. Really listen. I need to let people in. That’s scary. Terrifying.
And I couldn’t be happier…
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You can find Dustin at:
dustinriedesel.com
Cheeto Dust Podcast on SoundCloud and Apple
The Time that is Given 