Chillin’ in my infustion nook. Not pictured: contraband candy smuggled from the nurses station.

“Morning, Olivia! How was your weekend?”

“Great, Hayley, and you?”

We bantered on about the perfect fall weather, about cozy clothes and hot, sweet drinks between our normal routine of prepping my hospital bracelet, verifying my name/DOB, and handing me a parking pass for the ramp. On the short walk from our Covid check-in at the door to the infusion center, I recognized every other nurse and doctor who walked by, getting a little wave from a few and a nod from another. Having all varieties of weird cancer-adjacent medical emergencies the last nine months, I’ve gotten snuggly with all sorts of departments beyond oncology. Interventional radiology to ophthalmology to my traumatic/intimate…adventures?...with urology - I’ve befriended broad swaths of the staff at UIHC** (#HumbleBrag). I’d like to think the little gestures of acknowledgment in passing are because I, as Hayley, am memorable, but the truth is it’s probably more like I am one of the few young, bald cancer patients they’ve worked with. It could also be the dope outfits I wear, a far cry from the usual denim-tucked-into-a-Hawkeye-shirt-with-phone-belt-clip uniform of many patients. A standard issue looks for Iowa.*** After searching for my phone in the many bags I tote to the hospital, that belt clip looks pretty enticing. Function over fashion goals.

Speaking of bags, after 2-3 days per week of hospital visits for a year and a half, my packings is dialed in. Hot hospital bag-packing tips: Pack like you may be staying overnight sans a change of clothes (although layering is encouraged unless getting body blasted by A/C is comfy for you). Two bags are coming. The first is digital, the second is analog.

Digital = a very small backpack with a laptop, charger, earbuds, phone. You know, digital stuff.
Analog = a canvas tote bag with snacks, silverware, hard candy (yes, the mouth is still bringing the funk), an extra mask, reading material, Kleenex, face wipes, chapstick, anti-nausea pills, and daily pills. Totes are great, so when they call your name in waiting rooms, you can just toss whatever you have out in there and sort it out later.
Oops, an unexpected thing happened, and you are headed upstairs for a longer stay.. Have a bag already packed at home with clothes, toiletries, instant coffee, and any other comforts, along with a list of other things to pack - a loving gesture for the friends/fam that are doing the packing.

Snacks? check. Personal water bottle? check. Battle buddy? check and mate.

“Hayley S.?”

That’s me! It’s never not exciting after a long wait in the infusion center waiting room to hear your sweet name on the lips of a lab tech whose job it is to weigh you, vital check you, and, in a case like mine where you have a port, puncture your chest with a needle to draw labs. It is also never not exciting to get that whole needle-in-the-chest bit over with, although a thick layer of topical numbing cream a few hours before helps loads.

The infusion center nurses know me as well or better then ‘civilian’ friends do. Kid's names, weekend plans, patient load, opinions on supplies like the newest flushes or needles vs. the old ones, latest episodes of shows we’re both watching - it’s real friendship stuff with an odd medical equipment twist. They know that I know just enough to help them along if they forget something. Sensitive dressing. Access both sides of my double port for multiple infusion days. That I prefer the mini Kit Kats and Reese’s PB cups from the secret nurse stash and am not afraid to ask. The best is that they know, like really know, when I’m not having a great day. No labs needed. I’m brought candy, warm blankets, Sprite, saltines, and they do the heavy lifting of entertaining me on those days. Can we all please agree that nurses and teachers are the GD saints of our world?! Just pouring out love and looking for ways to give more and more of themselves in service.

The infusion center at UIHC is quite the operation. Averaging 130 patients a day with around 60 chairs, the staff work with all sorts of drugs, not only treating patients and watching for signs of reactions to drugs but also working as the frontline voice between the patient, pharmacy, and doctors. They are our advocates when something doesn’t seem right, navigating all kinds of personalities while having to anticipate and answer questions with their wealth of knowledge yet receive variable respect for their credibility from more “educated” people. Then there are the personalities of the patients; our concerns, our fears, our pain management, and getting us to the bathroom. All 60 chairs are in their own little nook**** with a nurse assigned to 3-4 nooks. Every time a new drug gets hung, they wait with us for 15 minutes to watch for allergic reactions. During that sitting time, other nurses help one another out with patients, so I get to watch the dance of their relationships play out. It’s sorta like being a member of a kooky family, including the family members we hope to see and those we’d rather steer clear of. Being assigned that “loose cannon cousin” nurse can set the tone for the whole day, and both Evan and Mom know them all by name. “I got ‘you know who’ today.” “Damn. I’m sorry. Any good stories?”

I’ll give it up to cancer. This shit is FILLED with good stories. Funny stories of waiting rooms filled with older folks who use obnoxious ringtones but never manage to find their phones. Last week someone had a full gospel song as their ringtone, and half the waiting room started singing along. We were on verse 2 before the phone was dug out of the bowels of a purse (see: hospital bag packing hot tips). There are sweet stories of small acts of kindness, of the lovely things said/done for me likely because I’m too dang young to be there (none of us should be there, BTW). Sad stories, especially seeing someone suffering in ways that we know all too well and are powerless to help. What we call Benny Hill stories of fiascos where nothing seems to be going right. Hundreds of days in the hospital with hundreds of stories to tell.

The hospital has become like a home in a place you don’t want to be living. There are moments of anger, resentment, trauma responses, and total heels-dug-in resistance to being there…But your fav blankets and family are there, and that couch that is perfectly broken in is also there. You are making the best of it. What other choice is there?

Leaving Oregon in remission, I remember feeling real sadness that I’d never spend days with that specific group of people at Asante Medical again. Being in remission meant leaving a home, a routine, and a group of friends who have all really gone through some dark times together, especially in the heat of Covid. Even leaving behind the strangers with the obnoxious ringtones and military-grade belt clips whom I shared hours in waiting rooms with felt like a loss. I expect if I am cured, as time passes and I spend fewer days in the hospital, that feeling of loss will return. Once again, it is a practice in impermanence, in change being the only constant, in loving that long wait until I hear “Hayley S?” because someday, if I’m lucky, I won’t hear it again.

NOTES:

**UIHC = University of Iowa Hospitals and Clinics

***Looking at you, Oregon, where the standard issue uniform is sensible shoes, usually rugged sandals, with sensible, highly pocketed pants often rolled up at the bottom, a t-shirt with a flannel over the top, and a trucker hat while carrying a Nalgene bottle covered in stickers representing their personality and interests. Many Oregonians dress to be ready for a 2-day hike at any moment. Yes, I continue to dress like this. You never know when a hike can happen, people!!

**** Having the individual nooks while helpful with guests and privacy means I don’t get to meet or interact with many other cancer patients unless we chat in the waiting room. It’s kinda a bummer to miss out on that community vibe.

Home is where the hospital is.

Are you there, God? It’s me, Hayley.

Dearest donor…