The one and only time Evan and I selected the shared space option with Airbnb, our first 5-minutes on the…farm?…began with him saying to me, “oh shit, this house is straight-up haunted,” parking then dragging our roller bags across an uncut field of rotten fruit towards a hefty looking wood door with some sort of royal crest embossed on it to be greeted enthusiastically by a disheveled civil war reenactor, in full character, welcoming us through speech garbled by the sound of his housing chunks of meat eaten with his hands from a mixing bowl. It was one of those moments of total acceptance that yep, we are now on a mysterious adventure of which I have zero frames of reference. My safety may be in question, I will literally never forget this, and I wonder if/when the new waves of smells with stop slapping me in the face.

Sit with that scene for a minute. Got it? Feel all the panic, the curiosity, the total surrender of, welp, guess we’re doing this and what will our room be like? This shared feeling we’re vibing right now is my best way to set the scene for the strange experience of extended stays as a hospital chemo patient. Tagline: “I guess we’re doing this and everything smells weird.”

First, an acknowledgment of my definition of extended stay and what this story will not be. There are many patients with blood and bone marrow cancers such as leukemia or more advanced or complex lymphoma who can spend months or even years, inpatient, many in hospital room isolation due to compromised immune systems. I hold this perspective and bring with it endless gratitude for:

1. The science, doctors, researchers, and other patients through time that have modernized treatment, winning and losing battles in that science and with their own lives so my and other lives may be saved.

2. Having access to health care including health insurance as so many around the world don’t and have to make unimaginable choices no humans should ever have to make.

3. That it’s looking like I’m going to need 6-cycles to survive this bout (fingers crossed) when so many others experiences are long, often a lifetime of treatment, and may never be facing the hope of full remission.

Unfortunately, the world of sickness doesn’t escape the troupes of our capitalist world which will make you believe there is a hierarchy of winning to losing based on class, race, body type, job titles, and resources. It’s tempting to place your pain on that sliding scale and say, well, I can’t or shouldn’t say anything because people are suffering SO much worse. So many stories get lost this way, relatable stories, stories that can educate and elevate people out of their own malaise or give the gift of essential hope and empathy. As always, this is my story. One story.

One thing this story will never be is a smack-talk session on the accommodations or the care I receive. Are there things to optimize? Uhhh, 1000 times yes. Do I wish that I had a spa-like glass atrium that pumps fresh oxygen with a fabulous view of the sky while Greek men feed me grapes? Yes, yes I would.** Then again, I was also promised hoverboards thanks to Back to the Future, and not only are those not really a thing but I’ve developed rational body awareness that makes me acutely aware of the danger to pain ratio so I wouldn’t want one even if I could. ANYway, we’re keeping this real cool and real on topic.

Checking in, Day 1

Friday. An early CBC and metabolic blood test then meet-n-greet with my oncologist to make sure that I’m healthy enough to be poisoned. Evan and I wait an hour between poke and chat (aka medical foreplay) which we spend hanging outside by the snazzy koi pond staring at our phones until the test comes through MyChart for us to review first. An Oregon law requires patients to get results as soon as they are available which, as you can imagine, is both terrifying and tempting. We know what to look for: AST/ALT + bilirubin near range (can my liver handle this) and neutrophils + lymphocytes + platelets near range (can my immune system handle it). We compare other cycles and high-five great news or write down what-if questions. The office visit is a series of questions on the same theme of how am I feeling, what symptoms am I having, how am I managing them. With the stamp of approval, I get assigned a hospital room for check-in. We live close enough to walk to these appointments so head home for cat cuddles and grab our bags.

Things I always pack:

Photos of friends, family, and cats. I build a collage to look at all the time.
Totems. I have a Ganash (sturdiness), Jesus (love), and Buddha (joy) as well as the gems iolite, auralite, jet, and tree agate, and some prayer flags. Covering all those spiritual bases, ya’ll! #DreamTeam
Snacks. I won’t ever feel hunger this week but eating helps keep nausea at bay and my bloodwork is always better when I eat. I’ve found basic foods like raw oatmeal, fruit, crackers, and avocados are best. This is a great time as a friend to check in with the caregiver on delivering food.
Comfy clothes with easy access to the port and closed-toe shoes. No one told me until day 4 of cycle 1 that I didn’t have to negotiate my ‘cash and prizes’ danglin’ out of a hospital gown. My footwear of choice is green Crocs. Function-wise, it saves my toes from kicking the IV stand on walks. Style-wise they will be a fun thing to burn as an effigy when this is all over.
Books. I will not read these but I don’t like living in any room without at least a few book buds to keep me company.
Toiletries. Wash your face, AM/PM. Brush your teeth often. Put on that deodorant, drink your elixirs, spray the air with the froo-froo misty smelly good stuff. There will be no showering unless you count the sticky sanitary sage wipes. And trust me, things need wiped, freshened up, de-funked if you will.

Things you are allowed to whine about.

Whatever you want.

Things I mostly whine about (not including care preferences).

Peeing my pants frequently. Not full-on flow but…enough. In the 5 hospital days, I’m crammed with 100 mL of saline per hour plus the water I drink to not get constipated then get immediate urges to pee then have to unplug the IV stand from the wall, make it across the room pushing the stand, uncover the toilet that is draped by a weird absorbent blanket to prevent a toxic splashback tidal wave situation, and negotiate droppin’ trou all with hold-on-tight bladder muscles too weak to do there thing as my body is using that energy for vital organs. Uhhhh.
Feeling like I’m living inside another person’s body. Between the 10-20 pound weight gain from fluids, the facial swelling and mood swings and painful constipation from chemo and high-dose prednisone, the increasingly bruised arms from the several daily blood draws, getting my port flushed with saline then capped with alcohol which both drip on me and my clothes, the scars from abdominal surgery of which I’m still healing, and the lack of sleep from constant checks on my vitals all day and night, the wet pee pants - each day I’m less recognizable to myself.
How are we hanging in there on symptom lists? Too much? Yeah, this is the last thing I whine most about which is how much I want to whine. I’m getting great care, in a safe place, that insurance is mostly covering, surrounded by love and support but, dang, I really don’t want to be there and I’m REALLY uncomfortable. I whine a lot about wishing I would whine less. It’s real meta and I’m figuring the middle way; not giving myself a hard time for not being balls deep in gratitude all the time or lost in angst and wanting for something different. Let’s be real, this is not a new, not a cancer-specific practice. This time in the hospital is just bringing it real close to the surface with lots of time to just sit.with.it.

Getting a daily shot to prevent blood clots, swollen, and scarred. It do be like this sometimes.

How I spend my time.

Doing whatever it takes. There are things I count on and look forward to. I/we take short walks we call “mega loops” which consist of 3 x .15 mile loops down the same congested, dark hallways that always deliver good hospital observations of patients, some of their family drama, and chats with the staff we’ve grown to know and care about. The oncologist comes in around 10:00 AM each day to review my bloodwork with me and discuss symptom management. This past cycle I was on the edge of needing a blood transfusion, so that was new and fodder for research. That’s just it, the theme is being in the now, the new. Allowing the sadness, the boredom, the feeling of being cooped up to crest and fall, crest and fall. There are hours of napping, of watching Tik Tok videos, of staring out the window projecting personalities and voices onto the pigeons shitting on the roof below. I like writing these chronicles propped up at 30% in my bed during the dark, quiet hours when I cannot fall asleep after 4:00 AM nurse/CNA rounds. Sometimes there are hilarious true crime documentaries playing on the small mounted TV from the ’90s that plays through my nurse call button thingy which is identical to the one from The Office. I do whatever it takes. Then…

Checkout

Wednesday. The same check of my blood counts to make sure I’m healthy enough to recoup at home and, if so, I’m given discharge instructions, my IV tubing wrapped up, my port disconnected, a list of medications to pick up, and I walk freely downstairs and out the door. I cry the moment the air hits my face, every time, no-fail, without thought. I roll the window down and let the tears flow. At home, I track down every cat and make it snug me. I take a long shower. I go outside in the garden and lay in the hammock. I look up at the sky. Hours later I go back to the oncology clinic to get an immune booster shot. This will take a full 24-hours to kick in and until then I have little energy for anything but laying. But I’m laying with kitties in a clean body with my smells, my things, in my place. I stare out the window for hours and makeup voices for my birds, Darrell and Carol, who live in our backyard. It will be 15 days before I return to do it again.

I already know there is part of me that will miss this, ALL this, including the ugly, painful bits. As my suffering becomes more immediate, life shrinks as I am no longer being pulled by the hundreds of tiny, insignificant decisions of a day. The more the insignificant outside shirks the more infinite my inner world expands. I wonder if I’ll be able to have access to what matters most to me once the suffering isn’t pressing against my nose as it is now.

But you know what I will not be missing pressing against me? Pee pants. Uh uh. That shit is for Darrel and Carol - the birds.

Arbitrary footnotes:

**The men don’t have to be Greek or even men but I would like to request those fabulous little organic cotton candy grapes. Who can I thank? Science is awesome.

Hospital life.

I’m angry.

I don’t want to do it wrong.