Erica on Being in Hospice Care
Erica Chase-Salerno was a journalist, a wife and mother of two, and an indefatigable spirit. Diagnosed with Stage IV breast cancer in 2015, she shared her experiences of undergoing treatment and all side effects with everyone. Her diminishing health did not stopped her from engaging in life “head on and heart strong,” as she said. Erica’s Cancer Journal, which was published regularly in the Almanac Weekly, recounts her trip down this arduous, difficult road.
Her sense of humor bordered on the goofy and ridiculous—who tells jokes while they’re dallying in a chemotherapy lounge?—giving us permission to lighten up about this tragic situation. She taught us how to be fully alive while in the process of dying. In January, Erica joined the ranks of people resorting to hospice services. Here’s what she wrote:
January 3, 2019
“Putting the Spice in Hospice”
What do you call a bunch of chess players bragging about their games in a hotel lobby?
Chess nuts boasting in an open foyer!
Hmmmm….chocolate flourless cake, a festive atmosphere, dumb jokes, what are we celebrating today? Hospice! Happy Hospice Day to Me!
Today is my first day on Hospice.
What does being on Hospice mean for me?
– My life expectancy is estimated to be up to six months
– I still have an insurance deductible
– Hospice’s entire job is to help keep me pain-free and comfortable during my remaining time
– Services are based at home, including music & pet therapy – sweet!
– From this point forward, I cannot pursue curative treatments, like chemotherapy or surgery or radiation unless they are considered comfort measures
– However, I can leave Hospice at any time
Most importantly, I keep living my life as usual! (hopefully without the freaking shingles in my right eye, still healing from that hell).
What does the pirate say on his 80th birthday?
The recent string of surgeries and procedures have verified what my body has been telling me for months: it’s time to walk a different path.
While this earthly vessel is physically compromised—ok ok, so is my humor—I still dwell in the can– part of cancer. I’m like Jenny-from-the-Block, except I’m more along the lines of Erica-from-the-Woods. I need you to dish out the same sass you already outwit me with, share the love you’ve showered me with since the beginning of this wild ride, and forgive me for ending with all of those prepositions.
Things are changing, I’m a little shaky, unsteady, Mom’s spaghetti. You know I’ll continue to keep you updated the best I can, considering the challenges letters and words are for me right now. I’m grateful for this window before my body further declines.
Thanks to my hospital nurses for this tip: Large pills can be swallowed whole, effortlessly, with applesauce! (This just in – yogurt recommended, too!)
I don’t know why – if it’s psychological, physics, or what, but I have taken a LOT of pills in life, and this works every time, including the gi-normous horse-sized pills I’m currently on.
January 17, 2019
– 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.) 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?”
Head On and Heart Strong!
Published on February 7, 2019, the day Erica died…
The wobble in my voice is new. I sound shaky, frail. I have never heard this sound out of my mouth before. Does Beyoncé ever wake up like this? The next day, after increasingly desperate panting, I learn the term “air hunger.” Hospice arranges a delivery of oxygen. Me: “Um, I don’t know what size I need. Do you have a variety pack?”
I am suddenly coughing through my food, and especially drinks – like some of the flaps aren’t sealing properly. I rely on straws to prevent me from choking. My appetite nosedives, but my body makes the most of it: craves fresh produce or bone broth rather than pasta or spoonfuls of chocolate chip cookie dough.
Breathing becomes increasingly labored. We increase the air flow from 0 to 4. Such heavy equipment to process air. Personally, I appreciate that “canula” integrates seamlessly into our daily dialogue, as in, “CANU-la believe it?” or “Aren’t you my sweeeeeeeeeeet canula?” Random numbness. Urgent pee jags. Teeth that feel like they’re loosening into Shrek formation.
Is this it, I wonder?
(To read more from Erica, visit https://hudsonvalleyone.com/tag/ericas-cancer-journey.)