What is hospice like?

Erica and Quinn at Tillson Lake in 2012

– 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.

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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?”

Let me know other related topics you’re curious to ask about or explore at erica@chasal.net.

Head On and Heart Strong!

Love, Erica

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.