The Uncharted Waters of "You look okay, you Must be ok"

I will try to write this post on the interest of information, and not to gather sympathy or pity. That ship has sailed, so to speak, in the pity department... After the first biopsy, when my body decided to allow cancer to develop, when I needed all of the treatment. Like any uncomfortable topic... People get that look when you talk about experiencing cancer. 

The active treatment phase of cancer is wild. Some people choose to be transparent about their pathologies and treatment plan, while others try to keep it a secret. I'm sure it's a matter of trust and personality - I know people in support groups that worked during chemo, wore wigs constantly to cover the bald evidence and never told anyone what they were going through. I never felt like that was a possibility for me nor do I enjoy keeping secrets. (I'm a terrible liar). My bald head was a declaration that I was going through something. 

But everything is temporary and in 2024, I have several inches of hair and expanders in my body that replace the breast tissue I had removed last summer. I look relatively normal. But I feel like the divide between normal and what's really going on in my brain is widening all of the time. 

Survivorship is really hard. I've struggled since January with the pressure to do everything right, as if I have the ultimate control over whether the cancer returns. This might seem doom and gloom, but no one can convince me that everything is going to work out. I sometimes feel like I've gotten a taste of what's going to be my demise - and now I'm just hoping for as much time as possible. And with that thought always in the back of my mind - I also have to function like a sane adult. 

My whole life I've been a quiet patient. I can endure a lot. I had kidney reflux problems when I was young, when doctors would attach a catheter and fill my bladder to uncomfortable levels and then watch as I emptied my bladder on an MRI. I've broken my leg, broken an elbow, smashed the bejesus out of a toe, had fainting episodes as a teenager, had a bastard of a gallbladder and so on. I gave birth in a bathtub by myself. I am calm on the outside and figure I might as well manage my pain quietly because what's the sense in causing a scene. I don't know how much of this is my natural personality or a coping mechanism due to living in some emotionally volatile situations. But regardless, sometimes I think people assume I'm good just because I'm not whining. I don't envy the type of person who freaks out over every little bump or scrape... But I do wish the quiet patients could get a little bit more empathy. Yes, the squeaky wheel gets more attention (and I don't want to be the squeaky wheel) but I sometimes resent that it's the calm, collected patient that gets dismissed.

I've come here mainly to say, and advise, check in your people that have gone through something traumatic. Going back to your life, as if it was just a brief interlude, can feel really lonely. Pain is lonely, and that's no one's fault - it just is. It's okay to ask them how they are coping. I didn't know to do this until having cancer myself - the fear of reoccurrence is real. It's like the damn Babadook. Cancer is a chronic condition. It's never something to joke or make light of. 

An overwhelming majority of people in my life have treated me with genuine care and concern. There's always going to be characters, however, that acted nicely when they thought it mattered and then turn that empathy off when they think a certain timeframe has ended. I realize that those people probably didn't have empathy to begin with.

Every time I hear news of a reoccurrence for a breast cancer patient or the death of any high profile like Shannen Dougherty... I am reminded that it's a very real possibility for myself. I know in my rational mind that we are all eventually going to "lose" to this thing called mortality... But can someone tell my amygdala to cool it with the fight or flight?!?