Triggers and Glimmers and RESEARCH, Oh MY! (my CLL Journey) – Part 1

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By: JANA GREENE

Tomorrow I will find out what stage my Chronic Lymphocytic Leukemia, as well as my prognosis. Sunday, I had a little nervous breakdown – nothing that would send me to a grippy-sock vacation, but enough that I purged three weeks’ worth of tears in one flail swoop. I really let it out, which ended up being a good thing, even though I tried to resist The Big Cry up until then. I was afraid if I started, I wouldn’t be able to stop. And I was right – I didn’t stop for hours. But eventually I did, if only because I exhausted myself.

Monday, I felt a little better.

Tuesday, my nerves started gearing up again.

And today – Wednesday – I have been up since 2 a.m. doing “research.”

Now “research” by a person such as myself, means obsessing over whatever the Internet says my results are. The internet gives only two types of medical information – the shit that paints a gloomy picture, and the shit that is so clinically detailed, nobody outside of medical school would understand it.

I have berated myself on a number of occasions because I like to think I’m intelligent(ish,) but I cannot follow the concepts that keep the human body going. There are too many numbers, symbols, letters, reactions, tests, and charts. I was lost at line 1 of every article I read.

I am not medical-school smart, obviously. I am an empath who can micro-read the slight variations in a tone of voice, miniscule body language movement, even a “vibe.”

A genius at vibing, which frankly has never paid the bills or helped me read a medical report. I can string words together pretty well – words are my art medium. I can understand some abstract concepts, but I am lost right now. And my brain has only one useful thing to say in all of this drama, which is – unhelpfully – worry. How many times do I have to surrender? Meditate. Go inward, Self. And for cripe’s sake, you failed 10th grade Algebra, so maybe stop trying to make sense of flow symmetry and lab results.

My head is a jumble already, what with a crash-course introduction to CLL Genetic markers? I’ve learned what some of them mean. Flow Symmetry tests? Pure sci-fi. Bone marrow biopsies? Not as bad as a spinal tap, but certainly no fun. PET scans? Makes you radioactive and entails a lot of waiting around.

But I have also learned that mine is a typically slow-growing cancer and is rarely diagnosed in someone under 60. Many people live years (being closely medically monitored) and there are treatments that typically help extend the life. I keep telling myself it’s “no big deal.”

That I already contend with chronic pain and illness on the daily, I’m frustrated with this additional issue. So, daily I find myself fluctuating between telling myself to stop being such a baby, and equal parts Oh my GOD. (And yes, I recognize that there are much worse cancers, much worse conditions out there … this is just my brain trying to hammer my feelings out of my noggin and onto a page, where it is much easier to reason with!)

The not-knowing is awful. I will be happy to close out my “research” study, after the appointment tomorrow. Knowlege is power (for real for real) and I guess that’s why I feel like a puny weakling right now, especially mentally. But ONWARD AND UPWARD. I am actively seeking “glimmers.”

“Glimmers” are simply the opposites of “triggers.”

I can focus on being triggered, and there will be plenty of reasons to be. The triggers that, well…trigger me. LIke: I am legitimately phobic of hospitals. The very word “cancer” trips me up. Thinking of how all of this will ultimately affect my family – HUGE trigger. How much is this going to run us, financially? Feeling like I was already sick, so what the actual HELL? There’s a little justifiable anger there, if I’m being honest. The pokes and prodding. The waiting rooms. The smell of antiseptic. Germs. Upended plans. Good old fashioned sadness.

Next, I think I’ll write about glimmers, and end today’s writing sesh with some positivity.

Blessed be.

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