Erica’s Cancer Journey: “Groove is in the heart – Rewind style”

Erica on board the Lois McClure canal schooner in Kingston

“When the heart speaks,  the mind finds it indecent to object.”
– Milan Kundera, The Unbearable Lightness of Being

A retrospective of a week that began as an ordinary day, with a side of shortness of breath.

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Monday: Home!

Earlier Monday: Have tried literally everything on the hospital food menu. My Arabic is still not on its game, despite brief daily “lessons” and patient tutelage from a service employee. Mike packs up all of my room fabric “hug” banners and decorations.

Sunday: Feeling great! Tube is out! I’ll be discharged sometime Monday! One cool discovery is a blue thing, known in the biz as a “pigtail,” intended to keep the attached drainage tube in place but is flexible enough to straighten when pulled out. Until then, the only visible part of the tube I could see on the exterior was clear, flowing my heart-effusion juice into the clear “purse”/collection bag.

*Drain Removal Time* (yay!)

Me: I want to see what you just took out.

Dr.: I don’t think that’s a good idea.

Me: Why not?

Dr.: Because it’s covered in blood and stuff.

Me: [ohhhhhhhh, no. you. didn’t.] I gave birth. I know gross. Let. Me. Seeeeeeeeeeee!!!!! You know I’ll just take it right out of the garbage anyway!… [continues relentless insistence]

Dr.: [awkwardly cannot fit the collective blue waste “burrito” into the container he’d planned on, hurriedly proceeds to separate everything out for disposal while I catch a good look]

Me: [gasp] It’s blue?!?!?!

Dr.: What, blue’s not your color? Heh heh. [interesting explanation of pigtails ensues]

More laps, more stairs.

Saturday: Put on my “big-girl” clothes now that I know how to manage the drain and heart monitor better. More laps around the hall floor and stairs. (Also, emergence of a confounding story for another time: The Case of the DNR/DNI Bracelet Chronicles.)

Friday: Busted by Mike for licking the cannoli filling off the lunch plate. Lots of laps around the hall floor, added stairs. Also completely inspired by a service employee’s backstory before moving to the US decades ago. Reconnected with a favorite nurse.

Thursday: Can’t do the speech tonight for National Cancer Survivors’ Day in Kingston. But it was beautifully read by Robin, Tom, Jim and Benji. [printed in June 14 Almanac Weekly] 

Earlier Thursday: Had procedure late this morning, been sleeping most of the day after that. Finally woke up “for real” around 5 p.m. Can breathe better and brush my teeth without getting winded, but utterly exhausted. Was moved to another floor, and I now have a single room. So grateful for that! Now waiting for my effusive heart to finish draining into my tube from heart area, out through sternum, into my swanky clear plastic purse…okay, fine: pouch or collection bag or something, clipped to my hospital gown with those weirdo scissor-gators that clamp, not cut, but look just like scissors, over the next “while” (couple days?), then home. Reunited with several favorite medical caregivers. 1.04 liters came out of there, baby! Puzzled why I am still not asked to contribute to a medical journal. 1.04 liters in my heart.

Even-earlier Thursday: I am for-real sobbing. I am starving. Dehydrated. All part of impossible surgery prep. My rock bottom hits rock bottom. I lose it when I’m told this torture continues until this afternoon’s surgery slot. Nurse-friend happens to walk in, hugs me at the same time that the schedule unexpectedly opens up with an earlier time. I go right in. They’re busily prepping. But it’s silent. It’s not my first rodeo. I am accustomed to more chatter during OR prep. I ask if they work together regularly. (Yes.) Then I ask, “Do you hate each other?” (Wry laughs.) I am desperate for a little levity. I share that I have never felt this isolated before, sitting here with so much happening around me but not seen or heard. Like I’m not even here. You are going in my heart. I need to connect with you humanly. I request to shake their hands before we start. I thank them for working with me.

Super-early Thursday: Update! I am effusive and also have a heart effusion: excess fluid around my heart causing me to be short of breath.

– Procedure to drain it “sometime” on Thursday. 

– No food starting midnight.

– Maybe around 1 liter of fluid in there!

– No, it’s not the most they’ve ever seen.

– Done by a needle drain.

– My main heart chamber is doing great.

– The chamber behind it is where the lots-o’-fluid is.

– They enter under my sternum during a live ultrasound. Advantage to having more fluid (like my situation) than less is less of a chance of needle going in too far.

– 20-minute-ish procedure.

– I leave surgery with a tube/drain out of my sternum into a bag on my torso. When it stops draining, drain comes out and they bandage me up for home.

– I’m here at least two to three more days for all that to happen.

– I should feel immediate relief after the procedure, breathing easier.

– Yes, the people involved are good at it.

– The fluid has probably been building up for months.

– It is not anticipated to build up again, but bodies are weird, so who knows?

Here for two to three more days. I feel well otherwise.

Wednesday: OMG when your friend diagnoses you better (and faster!) than the doctors!

(I have a heart effusion = extra fluid around my heart.) #iameffusion

Effusion: an escape of fluid in a body cavity; an act of talking or writing in an unrestrained or heartfelt way. Synonyms: outburst, outpouring, gushing, rhapsody.

Transformative journey from a gifted, experienced healer that led me to understand the entire effusion journey in spiritual terms. I am positively jubilant! [story for another time]

Mike sends me a photo of my first purchased art piece decades ago: Effusive Text by Anita Wetzel.

Everything is so connected, I can’t even.

Earlier Wednesday: Hi, everyone. Here at Vassar for shortness of breath. Still tracking down a cause. Never a dull moment! (Madi wonders if it’s because Mike took my breath away 🙂 ) 

Not sure how long I’m here; I feel well otherwise, but I hope to know more today. I don’t host hospital visitors because it’s too much stimulation for me on top of all of the constant poking and prodding. Plus, my shared room is tiny. But, if you’re so inclined, you’re welcome to message me your best jokes, inspirational quotes, complaints about your day, whatevs. Thx!

Tuesday: Admitted to the hospital, loved up by my favorite medical caregivers who are still on that floor. Cancel neuro consults. Thursday speech still looks good to go.

Earlier Tuesday: Shortness of breath has increased over the past week. Time to reach out to my medical team for suggestions (packs bags just in case, glances at tomorrow’s calendar: consults with two different neurosurgeons about these growing brain tumors).

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.

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