Hospital blues (beiges?)
I shove my IV cart a few feet in front of me and then shuffle to catch up before the tube yanks against my chest. The cart careens lightly into the wall and a nurse spares an eyebrow raise as she hustles past me. The 0.15 mile figure eight hallway loop on the 12th floor encompasses the oncology ward and one other, which a nurse described mysteriously as “miscellaneous.” Beige, latte and ivory linoleum is flanked by neutral walls. It smells like rubbing alcohol, latex, fatigue. There are few windows, except for the large one in the hallway connecting the two wings, which surveys a maze of high rise buildings. And the big one in my room, which is the only reason I’m still sane. I peer nosily into other patients' rooms and catch glimpses of green anti-slip hospital socks, gnarled hands and empty vanilla pudding cups.
As I reach the tip of the 8 in the opposite ward, a woman moans and then bellows, “HELLOOOO?? IS THERE ANYONE THERE? HELP ME, UHHHHHGG IS THERE ANYONE THERE???” I take my airpod out to alert a nurse, who just looks at me. “Oh, they know”, she sighs, stripping a bed of its linen with practiced motions. I continue around the corner and my nostrils are hit with the smell of human shit. I walk the loop until I’m dizzy.
Hospitals are a place for the sick. Stark chambers we hope to enter as rarely as possible, for they house specters of death that whisper of our mortality. We go there when we need the fix - the injection, infusion, incision, operation. Upon admission, we slip into the cloak of the ill and surrender our dignity. Pull your gown down, open it up, flip over, quick poke, sorry didn’t mean to grab your boob there, how’s your stool? Western medicine is good at this: putting out fires, cutting out rot, spitting out names and writing down numbers. And then moving onto the next patient.
Western medicine will save my life, and for that I am tremendously grateful. I am grateful for the scientists who have spent their lives researching cures, and for the doctors and nurses who administer them. Grateful for those who have shown me care and attention and humanity. But I have also found the medical lens to be myopic: mired in diagnoses and prescriptions and uninterested in the larger context of healing. Impatient, and prone to overlook components of 'the cure' that are far simpler and more critical than we care to imagine.
***
The first few days of my hospital stay, I feel chipper. Buoyed by books, coloring pages, and calls from friends, I feel a kind of liberation - nothing is expected of me here! I can order food at any time of day! The baked mac n cheese is delicious! I perch on the edge of my bed and look east over Seattle at the North Cascades, cheerfully coloring in a Rottweiler face.
But all of this quickly loses its charm.
A fruit-punch colored potion called EPOCH - comprised of chemotherapies etoposide, prednisolone, oncovin, cyclophosphamide and hydroxydaunorubicin, slithers intravenously through my chest port 24/7. This four-day treatment is book-ended by two additional chemotherapy infusions called rituximab and cytoxan, while acyclovir, zofran, prednisone, omeprazole, potassium, tylenol, benadryl, melatonin, lupron and ativan join the daily medical orgy, each pill or injection battling the side effects of another. My ten morning and evening steroids hype me up to the power of six espressos, but I just feel tired and a little nauseated. The steroids also make my face puff up into a tumescent fleshy balloon - moonface they call it. When they flush my chest port with saline the bile rises on my tongue, tasting like acrid metal, like tainted blood. I gag and shove the nearest edible item into my mouth.
At night, my air bed whirs and bubbles beneath me. It’s got something to do with pressure ulcers (I just looked these up and realized they are the same as bed sores, which they could have just said in the first place), so the mattress deflates and inflates seemingly at will, dropping my centers of gravity into uncomfortable divots. My chemo potion is “like champagne” according to the nurses, which means that air bubbles frequently get caught in the IV line. My IV beeps like a reversing semi truck when this happens. BEEPBEEP. BEEPBEEP. BEEPBEEP. I jab the red nurse call button on my bed phone and mumble “there’s air in my line.” After the first several times I just murmur, “beeping”.
The nurses check my vitals every four hours. Hello, yes I am still alive! 12am: hold my arm up, stick my finger out, open my mouth like a baby bird. Pulse 41, blood pressure 115/73, temperature 97.6. 3:30am: vitals check. 4am: air in line. 4:30am: air in line. 6am: air in line. 7am: vitals check. I’ve been awake since 4:30 anyway.
Some nights, my IV goes off ten times.
BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP BEEPBEEP
I refuse to wear a hospital gown, and instead wear a dress I got in Paraguay that my Paraguayan aunt always jokingly accused me of having stolen from her grandmother. It’s flowered pink and purple and blue and I once wore it for three straight days when I’m pretty sure that I had dengue fever and I lay sweating in my host family’s bed beneath a porcelain bust of baby jesus. But that’s a whole other lifetime. Anyway, I wear this dress (“Sarita I thought you were my grandmother from behind! Where did you get that dress again?) or my favorite t-shirts that I stole from my dad and a bandana that makes me look like Prison Mike. Anything to maintain some semblance of self here, to resist total reduction.
My nurses and RNs are wonderful when they are in my room taking care of me. Ari shows me photos of her pitbull named Pizza who dressed up as Missy Elliot for Halloween (her trash bag look in “The Rain (Supa Dupa Fly).” As I scroll through Pizza’s Halloween costumes over the years, I savor a string cheese, which has become my favorite food in the hospital. “Man, I haven’t had a string cheese in about 10 years” I say, sliding a rubbery rope off the cheese shaft and popping it into my mouth. “But this is fucking delicious.” Ari looks up from her syringe and says seriously, “oh my god I know I have about three of those a day. Plus the puddings and the fruit roll-ups. I eat like a kindergartener here.”
But when I’m out in the hallways, I’m not anyone’s responsibility, and people are busy. Since I’m only allowed to designate two visitors total to visit me while I’m here, I have a lot of time to myself. I find that it’s the other employees - the cleaners and volunteers and maintenance workers, that will chat with me. I befriend the elevator repairman while he’s waiting for someone to help him get his wrench out of the elevator shaft. His name is Jeremiah and he doesn’t treat me like a patient. We talk about Spain and books and the time that someone smeared poop all over the inside of an elevator. “Good pace today!” He calls as I fast-walk through the elevator foyer on a steroid high.
I don’t meet many patients out in the halls because most of them have about half a century on me and are largely bedridden. I do meet one man on my hallway loop who appears to be in his 80s; he surveys me up and down and then smirks, “Wanna race?” “You’re on,” I say, and we chuckle chummily as we go our separate ways.
Isaac visits me and we walk through the hallways, appraising the random assortment of paintings that speckle the hospital walls, which alternately look like they were drawn by a child or acquired from the estate sale of somebody’s aunt who had eclectic and mediocre taste. We hold hands as he pushes my IV cart past the nurse’s desk and the nurse looks at us sadly.
“Oh, you two don’t look like you belong here. Wait, which one of you is getting the chemo?” I think that this is a very stupid question since Isaac has thick, black curls bursting from his head while I am wearing a bandana over my bald one (it's my second treatment) but I’m flattered nonetheless that she struggled to make the distinction. I smirk at him and he looks vaguely offended.
One evening, we squeeze uncomfortably into my tiny bed to watch Ted Lasso. Suddenly I feel a wetness underneath my shirt."What the -" I lift it up and see that my tube has become disconnected, and the chemo potion is leaking all over my stomach. I call the nurse and hold the piece attached to my chest upright as I shuffle over to the sink to wash my hands. As I let go of the tube it dangles from my chest and my blood begins spurting out all over the sink basin. "Shit!! What the fuck!!"I say.
The chemo is technically a biohazard spill (the nurses wear what are effectively hazmat suits when they change my chemo bag), but since it's only gotten on me and I'm already getting poisoned anyway, I just change my clothes and we start an episode.
It’s strange to not do anything for myself here. The nurses change my linens, bring my food, take away my tray, give me my pills, bring my shower wipes. I swing from restlessness to lethargy, one moment doing push-ups and the next plastered to my bed by fatigue. To stay sane, I give myself four tasks every day: 1) meditate 2) journal 3) go on three walks 4) do my physical therapy exercises. These help to create some semblance of a routine.
Another evening when my nurse Janerose comes into my room to check my vitals and give me my pills, I’m on my yoga mat doing my exercises and have also snuck an ‘illegal’ extra visitor (my friend Anna) into my room. From the floor, I peer at her over my knees and give her the same look that my dog gives me when he’s clearly just eaten a pork chop off the counter. Janerose sighs exasperatedly and rolls her eyes. “You challenge me,” she huffs grumpily. But she is also smiling a little and lets Anna stay.
My favorite place to go after getting out of the hospital (other than just outside) is to my chiropractor. Krysann works in a neighborhood office on the fourth floor. The room is open, wood-floored and sunlit by east-facing windows. The walls are plum, tangerine and lime and Japanese lanterns line the rustic wood ceilings, casting a warm sunrise glow. Succulents bask in the plentiful sunlight. Glass Animals, the Beatles and Jack Johnson bop and coo in the background while I squat and monster walk around the exercise floor, feeling my muscles working, recalibrating, strengthening, healing. The staff all know my name, and we chat about the Mariner’s game, someone’s roadtrip to the coast, that crazy thunderstorm last night.
While I’ve been getting treated for lymphoma, I’ve also been working through a debilitating hamstring injury that, over the course of months, caused my brain to forget how to walk correctly. The two orthopedic surgeons, three physical therapists and two acupuncturists that I had seen over the course of five months had been unable to help me, and as the bills piled up while my leg got no better, I felt genuinely hopeless that I would ever heal. I also felt wildly angry at a healthcare system that would charge me $90 for a five minute visit with a doctor that I had waited six weeks to see, for him to tell me that he had “nothing to offer me.” One physical therapist gave up after a couple months of halfheartedly ultra-sounding my leg, concluding that I must have rheumatoid arthritis (I do not). I felt enraged, cast aside, exploited, unseen. But I’ll save a lengthy rant about our healthcare system for another time.
When I went to Krysann she examined my body holistically, feeling the roughness in my muscles, affirming my pain, finding my strength imbalances, taking her time to understand the cascade of relationships that were precipitating my symptoms. In two months she helped me to progress dramatically - to at last begin the process of healing. We developed an easy friendship and she made me feel like a human, and not an injury or illness. When I asked her why she had become a chiropractor, she replied, “I wanted to be a doctor who told people they could, not one who told them they couldn’t.” She went on, looking at me thoughtfully while eviscerating my calf fascia with her thumbs, “When people are here I don’t want them to feel like they’re injured. I want them to feel like they’re healing.”
And that was exactly how I felt there - like I was healing. It was strange to feel this way just as I was beginning treatment for cancer, something that deemed me decidedly unwell. But even as I went from sandy-haired and chipper to bald and fatigued, unable to do more than a few squats without resting, Krysann pushed me gently.“Just two sets?” I would gasp hopefully, sweat pouring down my face and legs shaking with effort, bladder dangerously full. “Nope, do three!” She’d say cheerfully. After my sessions I would waddle down the stairs, walk outside and suck the warm summer air into my lungs. And I would feel a little less tired than when I arrived.
The days after my first treatment, I felt dismal. Walking up the stairs felt like scaling a mountain. My heart fluttered frantically in my chest and I saw spots from walking around the block. I woke up in puddles of sweat and had to pee ten times a night to get all of the fluid from my treatment out. Looking at screens made me dizzy and pounding headaches plagued me at night. My throat was coated with a thick mucus and I chugged ginger tea to keep the nausea at bay.
I wrote a poem, which I never do, and which I don’t even know how the hell how to do, but I did because full sentences seemed like too much work. I’m vaguely embarrassed to share this but will because I have no poetic pride to squander.
I am deep underground
sandwiched between dirt, rock, detritus
every atom compressed
until airless
So heavy
Poison infiltrates my veins
sapping vitality to offer life
Even though it doesn’t feel like life
with boulders on my eyes, forcing me
down, down
Into the first million years of slumber
where I hope to be transformed
where I hope to find rebirth
and sanctuary
aboveground
Pressure, heat, poison
together crushing the disease
Concocting my metamorphosis
when I will excavate my soul
up up up
toward the sun
Where I will burn and spark with electricity
long contained
Soaring once more
free,
until the next
fall
Whew glad that’s over. Anyway,
Even though I felt dismal, something felt better now that I wasn't in the hospital. I could lie on the grass and feel the breeze on my face. I could smell the neighborhood flowers. I could cook a breakfast vegetable hash. I could go listen to the compline choir chant and sing in eerie latin. I no longer felt claustrophobic and babied. I'm convinced that hospital made me feel sicker simply by virtue of being there. Why is it that we've insisted on making hospitals ugly and stifling? Could we instead paint murals? Put plants everywhere? (fake ones if real ones aren't allowed)? Offer soft lighting options? Install lots of windows? Utilize colors that are not on the brown spectrum? Provide exercise machines? (My hospital did have an exercise bike that someone had donated, but it was broken. It was a nice thought).
Can we make hospitals conducive to healing instead of to suffering?
My plan had been to move back to Truckee after my first two treatments to start working full time again while getting treatment there, but the weekend after my first treatment had made me second-guess myself. In the hospital, when I had told the nurses my plan to move and work they had looked at me like I’d just announced my enrollment in an ultramarathon. “Oh.. um, usually people take a leave of absence. Or at least work part time.. Your body will be going through a lot” Ari had said cautiously. I had brushed her off at the time, but now I wondered if she had been right. Was I going to feel this bad for the next four months? Had my optimism been completely naive?
“Am I foolish to try and do this?” I asked Dr. Pagel at our appointment early that week, looking from his Seahawks socks to his face. He sighed and crossed his arms. “Look.” he said sternly, “the easy thing would be to tell you to stay in Seattle so that we can take care of you. Maybe a different doctor would tell you to do that. And I would tell some people to do that. But I’m going to tell you to go. I think that you are independent and strong willed and that you can do it. I think that you need to go. Some days you will feel puny. And your work will have to accommodate that. But then you’ll start to feel better. Go and try it because if you don’t, you won’t give yourself the opportunity to rise to the occasion, and you may regret denying yourself that.”
The kick in the ass was exactly what I needed. I left the hospital, got a mushroom and broccoli piroshki and went on a walk. And he was right. That day and into the next, I did feel better. The world stopped spinning and started to shine. My mind cleared and my cells bustled and sparked with energy again. I pondered my situation. In Seattle, I felt like I was allowed to be lazy, grumpy, idle. I was also anxious bearing such close witness to my parents' own health challenges. Moving out to live on my own and work again would force me to step up. To be responsible for my life and health and to do work that reached beyond myself. I decided that I was going to do it. Just one more treatment in Seattle and then I would be back in the Sierra. After my second treatment I found that the side effects were no worse, easier, even, than those from my first time around, and I felt encouraged.
I felt seen by Doctor Pagel that day. I felt empowered in making the choices that remained for me to make. I think he was able to peer past the patient and see a human with needs greater than simply the treatment, was able to assess that to be unemployed and living with my parents was not the prescription for healing. Krysann saw a human who needed attention, hope and a way forward. She saw someone who needed to run again, and understood that that was just as important as treating the cancer.
To all my friends in medical school, remember this: to listen better, look harder, touch more attentively. Remember that your patients are humans who want to be heard, and that Maslow's hierarchy is bullshit. People's fundamental needs are interconnected and simultaneous. Above all, what people need is a reason to live.
Since I recently moved back to Truckee, I had my last session with Krysann a few weeks ago. Even though insurance wouldn’t allow her to do virtual sessions with me while I was in California, she offered to do unofficial zoom check-ins to see through my healing. We regarded each other tearfully. “I’m so grateful I got to meet you and be a part of your journey,” she said shyly. I blathered my thanks and handed her a card I had made. At the end, I wrote “Thank you for helping me rise, even amidst all the other shit.”
We have the power to lift each other. It’s a gift that can be massive or it can be tiny, and all of them count. It can be leaving a rambling voice message, mailing a recipe book or flying across the country to spend the week. It can be putting charts and blood counts and protocols aside for a moment, and seeing clearly the potential that someone can't see for themselves. It can be picking up the phone to call, even if you don't know what to say. These gifts may seem unremarkable to the giver, but they carry weight for those who receive them. They are part of the healing. And I am so grateful for all of the people who have been a part of mine.
This is what makes illness bearable. Feeling hands at your back, some steady and constant and others intermittent, bearing weight for only a moment. Some in solidarity, some gentle, some firm and tough-loving. The hands of those who, though they may be in the Kingdom of the Well, are reaching through the clouds to find you, to say, I see you. To hold your hand and squeeze.