In the Weird Place (on my CLL Journey)

By: JANA GREENE

I have been feeling so yucky.

Pop-up fevers for no apparent reason? Check. Waking up at night drenched with sweat, when you are years beyond menopause (hysterectomy 2008) … Check. Crippling fatigue? Check. Covered in bruises? CHECK. Shortness of breath? Sometimes. Totally crappy immune function… bad luck or cancer?

Now these are all things that could have a different cause than my Chronic Lymphocytic Leukemia. Having been diagnosed less than two weeks ago, it makes me wonder though. It explains SO MUCH. But I have had symptoms for a long time, and have multiple issues that make me medically fragile.

Could be a Mast Cell attack (a comorbidity of Ehlers Danlos Syndrome) causing the fevers. Drenching sweat could be a menopause relapse or something, but since my ovaries left the building in 2008 when I had my hysterectomy, I know it’s not. Fatigue and easy bruising could be my Postural Tachycardia Syndrome (or result from my own clumsiness.) Shortness of breath could be run-of-the-mill anxiety, which has constant since the diagnosis – sometimes holding my hand lightly like a lover basking in familiarity (oh HI, Anxiety! I know YOU); sometimes squeezing so tight, like an anaconda is strangling my nervous system

Here’s the thing – I’m in the weird place right now. I am carrying malignant cells in my blood, but I have no idea if the cells are sleeping and dormant for now or having a full-on rave going on in my body, techno music blaring, glowsticks swinging, chaos ruling.

I have an upcoming, invasive medical tests and scan. I don’t know whether the scan will show no spread yet (and thus be Stage 0 – which means no symptoms but cancer in the blood/marrow, the best case scenario – as it requires only “wait and watch” approach); or my body could light up like a Christmas tree and require treatment right now. I don’t know. And the not knowing is hard, no?

But God is providing so much grace to me and surrounding me with support. So, either way, I’m keeping the faith, and holding on to a hearty helping of dark humor. I have always found those two to be essential to getting through tough spots. I will find a damn way to laugh about things, y’all. Humor is to my comfort in a storm what a safe harbor is to a boat. And I know God walks with me through all of it, holding my hand just right.

Thank you for taking the time to read this and follow my journey. Everything is called a “journey” these days – probably because everything IS a journey – but this is one not too many people want to be a part of. I write to process and believe that going through something hard without sharing the experience is a waste of a terrible era. Others need to know sickness and calamity are part of life, just as much as promotions and clean bills of health. We have plenty of people pretending everything is FINE, when clearly *gestures wildly* it is not. Healthy people make being healthy SO EASY. Some of them just roll out of bed each day with zero pain. What’s THAT like?

God bless you, friends.