“This will be one of the bad days,” I had told myself when I pulled my mask over my face that morning. It seems my team really gets a kick out of putting foreign objects down my nose and throat. In the hospital I was on a ventilator and on three separate occasions I had an NG tube threaded through my nostril and down my throat to empty my stomach. I don’t remember much about the Endoscopy-guided Pyloric Botox injections for Gastroparesis, but I was incredibly aware of every “bite” sampled from my airways during my first bronchoscopy. Let’s just say there’s been a lot of Lidocaine and amnesia-producing drugs with varying efficacy. Next up was an Esophageal Manometry and 24-hour pH Probe study. I made the appointment for a Monday when I had a Cytogam infusion. May as well spend the three hours of chair-bound monotony with a tube down my nose and throat, right? It would be a test to see if I could incorporate my natural tendency to multitask into my new medical environment.
Having survived 30 minutes of singsong directions from a nurse who shoved a 47-inch plastic tube down my nasal cavity and then told me not to swallow, I returned to my apartment sporting the second “flexible tube” of the day and created a link to a clock that would count down to 12:45 on Tuesday. I packed my infusion survival kit—headphones, hand sanitizer, my Kindle, the seven-slot pill box of the day, an external battery and cable—and trudged back to the hospital, waving to the same construction workers I’d passed an hour before.
During my stay in the hospital my veins were terrorized by Vancomycin, a caustic medication that is not traditionally delivered peripherally. Every night for a week I had a fresh IV placed. The morning dose would go smoothly and twelve hours later I would begin the second infusion hopeful that the heating packs and saline flushes I’d used to care for my vein in the interim would prevent another infiltration. Then I would watch as the surrounding tissue swelled up with fluid and my fingers intuitively found the plastic clamp and then the buttons to pause the infusion and call my nurse. I grew to love a PICC nurse who used an ultrasound machine to place the most beautiful extended dwell catheters in my arms, but even those could not withstand this drug. One afternoon the PICC nurse stepped into the hall outside my room to have a heated phone conversation with my doctor and, mercifully, the preventative Vancomycin therapy stopped immediately.
The abuse of my veins has had a lasting impact so I was instantly comforted when this man, my advocate, walked into the infusion lab that Monday. It took three attempts and a crisis nurse to get IV access for my last infusion, but he placed the IV in one try. It wasn’t an easy stick, he admitted afterward, as if I hadn’t noticed. Knowing he would not damage my vein kept my anxiety at bay. I had suppressed my standard impatience and waited as he carefully searched for the vein because he had earned my trust—and I knew from experience that he would sass me right back.
I turned on my headphones and tuned out the unrelenting cacophony of alarms ubiquitous in a hospital setting. Nurses came in and out of the room periodically to check my blood pressure and adjust the settings on the infusion pump. For the most part I ignored them, focusing on my angriest alternative rock playlist and the witticisms of Sylvia Plath. A new nurse swept into the room and addressed the latest alarm. I was reluctant to acknowledge her attempts to start a conversation. We had the same oversized phone case, but mine was even more massive surrounding a 6 Plus. That should have been the end of our interaction, but for some reason I had the impulse to explain how much better the larger screen is for viewing photos and that I’ve decided the few times a month I find myself showing my portfolio on my phone are suitable rationale for toting an XL brick all day every day.
“You’re a photographer? I love taking photos—just for fun, you know?” Having piqued her interest, I slid the headphones down around my neck. We talked equipment, gigs, and Instagram until a distant alarm demanded her attention. She bounced back in twenty minutes later and we exchanged photos of our dogs, our friends’ dogs, and our parents’ dogs. Each time she came to my room we found another topic we could connect on. Our truncated conversations grew more sophisticated when we got to my medical history and her career path. Before I knew it she was hooking up the final saline flush. I had forgotten the needle in my arm and the tube in my nose, engrossed in our discussion.
I left what should have been three hours of pull-your-hair-out solitude feeling refreshed and upbeat. Some extra effort from two nurses brought joy and comfort to “one of the bad days,” reminding me of the power of individuals. It’s a lesson I’ve been taught before, but that has been thrown into sharp relief at a time when my concentration on my body makes me uniquely aware of the way my mood manifests itself physically. I track daily vital signs and weights, each beverage, meal, and medication that goes in, anything and everything that comes out—preserving oh so much dignity along the way (care to hazard a guess at which emoticon I use to log bowel movements?), my mileage and time spent exercising, the levels of a considerable number of chemicals in my blood, and any symptom I can’t chalk up to Prednisone. Developing this routine has made me feel more in control of the changes to my body. Despite my outpatient status, there will continue to be days when I have to relinquish control and on those days my providers can have tremendous impacts.