– Knock knock.
– Who’s there?
– Control freak. [beat] Now you say, Control freak who?
Well, for starters, I can tell you that in my very limited experience, even though there are tons of recommendations about starting hospice sooner rather than later within that remaining six-month life expectancy, apparently very few people actually do it. I get it; I wasn’t ready before I was ready, either.
After months of reflection, I saw the writing on the wall: brain tumor removal; heart drains; respiratory weakness; sepsis; and because all of that is so boring, we spiced things up by contracting shingles in my right eye. On a scale of one to ten measuring pain from shingles, eye shingles score at about four million, conservatively. I still look a fright, and I’m scabby from the painful sores. But Mother Nature seems to “get me” on how extremely satisfying it can be to have a fabulous nose-pick, because she Herself surpassed all of my dreams with this new of level of epidermal joy scabbing around my face: level four million – in a good way! If it’s wrong to pick my face, I don’t want to be right.
But it’s not all glory. Time doesn’t stand still because I’m off cancer treatments. I have a pool going for which organ takes me down: brain, heart or liver. My oxygen tanks are already on deck for when I need more help breathing as my heart inevitably refills with fluid.
Hospice basically consists of a bunch of skilled people who come over one at a time. I don’t know how many (currently) able-bodied people are on hospice like me. The only people I have met since starting come right to my home. I have a nurse who comes weekly; a 24-hour hotline for urgent needs or questions; an awesome chaplain; and apparently, there are also music therapists and some pet therapy in the mix (I’ll report back on that). My insurance enables me to be there, but I still have the same deductibles and co-pays I used to. (Somehow I always thought hospice was free? Not for me, anyway.)
To me, culturally, hospice seems viewed is a societal synonym of: “So long! Farewell! Auf wiedersehen! Good-bye!” (I dare you to spell “Auf wiedersehen” without Google. #dankecopypaste) There’s this tragic tinge that feels like I repel people (note to self: get more mouthwash).
Yes, I’m dying, but, as I read this morning thanks to some great friends who shared this with me:
“What is it like to know that you are dying?”
“What’s it like pretending that you aren’t?”
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Head On and Heart Strong!
Kids’ Almanac columnist Erica Chase-Salerno was diagnosed with Stage IV breast cancer in the Summer of 2015. To read more about her experience, visit https://hudsonvalleyone.com/tag/ericas-cancer-journey.