I started this last week and then promptly had a meltdown. It was pretty epic. Don’t forget that Brian is dealing with a lot holding me together. That’s the hard truth that no one else (almost no one else) sees. IYKYK. For people lucky enough to have a partner or primary support person, that person also needs to be checked on. My every day is his every day plus his own every day. And a lot of days, my every day counts as enough for several people.
The thing with metastatic cancer is that it’s a lot of rinse, repeat. You do a thing, a thing happens, you do the thing to fix the thing, you go back to the thing. Sometimes you add a new thing.
It’s monotonous.
It’s exhausting.
It’s boring.
It’s tedious.
It never fucking ends.
Here’s the latest:
I’m 13 days into my first 30-day course of the meds at the reduced dose (Everolimus aka Afinitor 5 mg plus Exemestane aka Aromasin) which is almost as much as I took on the 10 mg dose before I had to stop because of the pneumonitis.
Guess what? I still have that stupid, stupid cough. It comes and goes, sometimes it’s worse. Also sometimes I have chills and body aches. I have been SUPER emotional (see meltdown, actually the second one in two weeks, a lot for me), had NO frustration tolerance (as we call it in the biz), irrationally anxious, and all around just feeling really alone.
Oh and today’s developments are a small ulcer on the middle side of my tongue, a welt on my lip that just has to be related, trouble sleeping and I think some percolating neuropathy at the base of my toes. And my appetite is shit, things taste weird, I have a gross taste in my mouth and I’m a bit nauseous.
Greece was magic, as I’ve said. And not being able to make plans and think ahead any further than my next doctor’s appointment is suffocating. Which then escalates my anxiety which then lights the match on the fuse of fear. Part of my anxiety was fueled by the amount of time it was taking to get insurance to approve the lower dose (huh? lower dose = lower cost, right?) and then for the meds to arrive at my local oncology hot spot. I think all that took a week and a half? Because too much time with no meds fuels an already overactive and over-freaked-out imagination. And of course, my tumor markers were elevated (don’t worry, my oncologists - because I emailed them both, that’s why you have two, right? - said to chill and wait for the scans) which sent me off the edge of the world.
The other part was good old scanxiety.
“Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to a cancer imaging scan, during the scan, and while waiting for results.”
*from breastcancer.org, see above link for more information
My next scans (CT and MRI) are next Monday in Lisbon. Usually, I don’t get too wound up, but this time I am on fire.
And the reason I’ve been mostly keeping it all to myself is because of what is known as “cancer muggles”.
A cancer muggle is a person who most of the time is really coming from a place of love but since they’ve never had cancer they have no idea what to say and knowing and loving a person with cancer is fucking terrifying. Because you have to be in it for the dark stuff and allow the dark stuff to live in the light when it needs to. So these mostly well-meaning and loving people say stuff. And oh boy, some of this stuff is amazing.
Urban Dictionary defines a cancer muggle as: “People who haven’t had cancer but like to give shit advice to us as if they have a clue,” or “A person that thinks they know anything and everything about cancer.”
Really, most muggles aren’t know-it-alls or Goopers. Most muggles love you hard and are scared too. And feeling scared needs to be fucking normalized for all of us.
Like I said, most of these people aren’t intentionally trying to make the cancery folk feel bad and isolated. In fact, it’s just the opposite. They are trying to make all the bad stuff go away with ideas and quick fixes and if-you-just-tried-this. They’re reaching for whatever without really thinking because they don’t know what to DO. And friend, we’re already trying and exhausted and that’s not what we need to hear. We need to you to act normal. To come sit with us, to come over with pizza and wine and cake and nail polish.
This made me LOL and it also has great suggestions:
https://www.mskatedecorates.com/cancering/2020/1/17/thingsthatmakecancerpatientswanttopunchyouinthethroat
LOLing about cancer is GOOD. Dark humor is GOOD.
Anyway, for me, fear + anxiety = shutdown. So that’s where I’ve been. Paralyzed and unable to write because I can’t deal with muggles, even muggles who come from a place of love.
I went to therapy today! It was great except my wifi was an asshole. And Winnie, aka Ma’am, is going to daycare all day Wednesday! And I have acupuncture on Friday! And I got really cool green Nikes and double-sale! And at the end of next week, I’m going to start going to the open studio time at a local ceramic studio. So. Much. Self-care.
Next update will be after my appointment a week from today.
xo
I wish I was a muggle but I’m not still all I can say is I FEEL and HEAR you loud and clear.❤️
I get it Jen. We need a pillar to lean on. It was so comforting to have John by my side. Sometimes you have to dig deep for strength. We all love you.