Not Down Or Out

It could be worse. I might not be laughing.

Month: January, 2012

Phoenix

On December 27th, I was physically broken. My hair was falling out in small clumps. I had a sore throat. I whispered because my voice had grown weary of crying for help that never came. My hands and forearms were dark smudges of bruising from I.V.s. My hands were raw and red from repeated washing. I had additional bruises on my upper arms and torso from heparin injections. My urethra was on fire from spasms around a catheter. I could not bear to sit up. I was hungry. My hips sported two- to four-inch long blisters and open wounds from radiation burns. My flanks were coated with paste to keep more sores dry. I suffered foot cramps. My bowel was spasming and oozing blood. I had a headache. I was hungry. I was filthy.

That afternoon I ate rice from a plate I could not see. Rice fell into my hair. When I managed to get up to use the toilet I brushed rice away because it looked like maggots grew in my hair.

After lunch I suffered repeated bouts of painful cramping. I pressed the call button. I called out for help. No one returned to check on me. My I.V. emptied and a new bag was not attached to my lead. A wound care nurse came to see me. She applied various treatments to my skin then left to get something and never returned.

I felt abandoned. I cried because it was only a few weeks since I had been feeling well. I wondered how much further I needed to go to die.

As the shift changed and no one came to check on me, I became convinced that I was neglected because no one wanted to help me. I picked up the phone and dialed zero. I asked for a priest. A priest called me and asked how he could help. I explained how and why I came to believe I might die of cancer prevention. The priest was reassuring. I explained how I had prayed for relief for days and received no answer. The priest said, “When you have prayed and heard only silence, then God’s answer is in the silence.”

I gave that serious thought as I waited for someone to check on me. Then it occurred to me, God helps those who help themselves.

I picked up the phone, dialed zero and asked for the patient advocate. No one was on duty. The operator said she would have a charge nurse come to see me. I told that nurse about my day. I told her I wanted a doctor to come to answer my questions. She summoned the best one I had met.

I told them that I had been ignored all day and would not put up with this again. I had questions. I wanted answers. I had pain. I needed painkillers. I needed toilet paper. If someone did not get it for me I would call a messenger service and a news reporter. I needed a plan for getting me released. I said, “I’ve been lying here feeling I have to be grateful for the treatment I’m getting because I’m uninsured.  But it has finally occurred to me that I have been an attorney for about twenty years and I never abandoned a pro bono client at his or her greatest hour of need. But that happened to me.”

I learned that my bacteria was commonplace. I could switch to an oral antibiotic. I could take a one-time per day anti-spasmodic medication. We could remove the catheter. A special bed had been ordered for me. I might be released the next day. I could take a cystological exam in a few weeks when my bladder had time to heal.

It was more information than I had received during my entire treatment.

The doctor left. Two nurses removed my catheter. It hurt, but the passing of it was also a relief. The nurse said, “You must urinate in the next six hours.” I stood and the bloody urine spilled from me onto the floor. Nurse E2 was irritated. She spread disposable bed pads over the mess. This made it impossible for me to walk to the bathroom dragging my I.V. stand. I whispered my prayers for comfort. I asked for another bed pad. E2 said,”It’s wasteful to use them without good reason.” I pointed to the ones she spread over the floor, “I’m not the one who uses them to wash the floor.” Her eyes narrowed. She next asked, “Why do you spend so much time in the bathroom?” I reminded her that I “have diarrhea after chemotherapy.”

A new bed came just as I was trying to get back to sleep. It kept me floating on air. For the first night in weeks I slept. A phoenix rose from the ashes of her own breakdown. I was empowered to save myself and did. Thank you, Jesus!

Fire

The graveyard shift is not for the living. When my clock said it was midnight I swung one leg over the side of my hospital bed. This put pressure on my catheter. I quickly dragged the second leg over the side. I stood. Someone had clipped my catheter hose to the front of my hospital gown. It was the largest size of gown–way too big for me. I unsnapped the arm closings and tied the sleeves to get them out of my way. I unhooked my catheter bag from the side of the bed and attached it to my I.V. pole. Then I stood like a toddler with a new skill. I reached over toward the wall and unplugged the I.V. pole from the wall. I hung the loose electrical cord on the infusion machine portion of the I.V. pole. My white socks were long gone. I padded toward the bathroom, dragging my equipment alongside me.

A half hour later I made the return trip. It was painful to climb back into bed. At one point, I was on my back dragging my body up to the top of the bed. I looked out into the darkened hallway and was surprised to meet the eyes of Nurse E2. She had watched without offering any assistance. “You need to learn how to do things for yourself,” she said.

“What do you know?” I said it softly, sarcastically.

Later that night, Nurse E2 and I tangled over my morphine. I could have it every four hours. It barely took the edge off of my pain. We disagreed over how long four hours were. I marked the time on my hospital room clock, which was wrong. I have no idea what manner of time mechanism she used. I waited six hours for morphine. I was ready to chew off a leg and crawl away. When I told Nurse E2 that my pain meds were overdue she said my last dose was three hours ago. I pointed to the clock and said, “My last dose was when it said it was one. It now says it is five.”

“That clock is wrong,” she said.

“But four hours are still four hours,” I said.

She shook her head. “Not on that clock. You’re getting too dependent on pain meds.”

I had to white knuckle it until Nurse O came in and checked the records. Merry Christmas.

My family and many of my friends called me that day. I had been prepared to spend the day alone even before I went to the hospital. I was not expecting the calls. They got me through a tough day. However, I was a little too vocal about my experiences with Nurse E. That night I asked him to change my I.V. line because I had hurt my wrist dragging myself up into the bed. As he taped the port into place, he said, “Now don’t be telling your friends I didn’t know what to do.”

I pushed my luck. “Could you find me some petroleum jelly? My lips are cracking. I’ve been putting Country Crock on them, but it’s not helping.”

He left, returned, and said there was none to be found. Bah humbug!

That night something happened on my floor that made the rest of the night very uncomfortable. A patient started yelling at nurses. They yelled at him. Then they started yelling at each other. Even though I felt severe pain I waited for Nurse E2 to come with pain meds, rather than calling for her. The vibe on the floor was so negative I was afraid to attract attention to myself.

I suffered consistently more painful cramps in my urethra. The burnt flesh, now pierced by a catheter, clamped on the catheter spasmodically. The pain was frightening. I prayed incessantly. I clutched at the bed rails. I cried. I shook with chills. I dug my heels into the mattress until the soles of my feet cramped. I begged for help from my nurses. They dutifully ran to call a doctor to request more pain meds. Their efforts and my cries were unavailing.

My next nurse proved much more capable than most. Her voice was sunny like island music. Her eyes showed sympathy. She found me standing by my bed, afraid to climb in. “What’s wrong?”

I explained that, once I was in bed, I would have painful cramps and feel trapped in my bed.

“What hurts?” she asked.

I showed her the raw red skin on my hips and backside. I explained about my internal radiation injuries and their reaction with my catheter.

“Hold on,” she scurried off. She returned with a tube of paste that formed a barrier between wounds and the world. She spun me around and spread some of this paste on my raw skin. It felt cool. “How about getting into bed?” she asked.

“I’m afraid of the pain. Maybe I can walk through it.”

“No, no,” she responded. “Sorry about this,” she said. Then she spun me around and gently pushed me onto the edge of the bed. “Let me take care of you.” She tucked me into bed and used pillows to take the pressure off of my wounded flesh. She called the doctor for more pain meds and, when none were available for another hour, she requested a muscle relaxant.

It was the only night that I slept. The dreams were strange. I thought that I had been hijacked by aliens. At one point–in reality or in my dreams–I was begging to be left behind. That did not happen again. Pain remained my constant companion until my release.

A doctor came to take his own blood samples for identifying my infection. He did not usually do this to a person lying on her back in a bed. I ended up with blood in my hair and bedding. It was no big deal. I wanted the infection identified and cured so I could leave.

Dominique came to visit me. She brought me a comb and brush, lotion, and lip salve. I needed them. My hair had started to come out in tufts. It was filled with sweat and chemo salts. After several days of fevered suffering, my hair rose in Medusa-like, odd bumps and twists. Dominique was there long enough to observe me writhing through a long, painful set of spasms. Dominique had brought with her a bio feedback tool that she used on me during my cramps. I think it helped. I think her presence made the staff more responsive to my pain. The nurse set up an I.V. of potassium and magnesium to reduce cramping. After Dominique left, I slept for two hours. It was good to sleep.

The rest of the night was not nearly so restful. I suffered a bout of diarrhea that took my breath away. I was eating meals that were on a tray higher than my head. I ate mashed potatoes, applesauce, grits, anything that stayed in a spoon. I could not cut meat so did not eat it.

Nurse E2 let me know that I was wasteful of supplies like toilet paper. When I ran out of toilet paper, she brought me a handful and told me to “make it last.” I had a bloody nose every day. I had diarrhea. I cried. When I ran out of paper towels she brought me an unopened pack, left them atop the soiled clothes holder. They were out of reach. It was a nightmare.

I was tested by fire in so many ways and for so long that, not surprisingly, I went up in flames. I kept telling myself to be positive and grateful, but it was getting harder to do that.

Frying Pan

That first night in the hospital was devastating on an emotional and physical level. It was Christmas Eve. I was in the hospital with an infection of unknown origin at a time when my immune system had been compromised by chemotherapy and radiation. I anticipated fewer doctors would be working. I was suffering and hoping for pain management, but had yet to receive any medicines that relieved me of pain. I had no toilet paper and suffered from hourly bouts of diarrhea. My room’s floor already was splattered with blood and other substances that oozed from me. I was hungry and had not eaten for a day. I expected no visitors as my mom had already made it to the hospital once and found the experience overwhelming. Many of my friends were out of town. My cell phone had two bars and no charger. My room’s phone could only be used to dial within the county.

Nurse O came on duty at seven in the morning. It took awhile for her to get her patients in order. Once she did, I received some of the best care I would receive during my stay. She tidied my room, changed my sheets, located toilet paper, examined the radiation wounds on my left hip and dressed them, called for more pain medication, and located a toothbrush and toothpaste for me.

The doctors made their rounds. A resident or other young doctor presented my case to two colleagues and an attending physician. The attending wore a gown, mask, and gloves. He said little, once taking my hands in his and bowing over me several times while saying, I think, “My dear lady, my dear lady.” Blood culture tests would be taken to identify my specific infection. The infection had spread from the urinary tract to my blood. I would continue receiving a broad spectrum antibiotic by I.V. I could have morphine periodically. I would have a CAT scan to rule out causes of urinary tract pain other than infection.

The CAT scan took place. Other than that, I suffered concurrently from diarrhea and passing blood clots in my urine.

Nurse O left at 3 p.m. and Nurse E came on for the second shift. He was distracted. Coworkers would call his name over and over. He was slow to answer the call button. He had much to say about being away from his family on Christmas Eve. He seemed helpless when I informed him that my pain had risen from seven on a scale of ten to nine on that scale. The blood clots I was forcing to pass through my urinary tract were larger, more painful. At some point in the early evening I stopped urinating. The pain ratcheted up. I began to howl with pain. Nurse E shut the door to my room and ignored my pain for a couple of hours.

Nothing could have been worse for my mental health. I felt abandoned.

To his credit, Nurse E eventually tried reaching my doctors for help. He got little support. It was later in the 3 p.m.-11 p.m. shift when he returned to suggest a catheter. I wanted it. The pressure in my bladder had reached a feverish level. I panted like a woman in labor. I prayed in incomprehensible bursts punctuated by frantic tears.

Nurse E tried to insert a Foley catheter in my tormented urethra twice. He was unsuccessful. I was over the top in the pain scale of one to ten. To his credit, Nurse E left and went to find a much more experienced nurse. Nurse S and Nurse E spread my legs like they were breaking a turkey’s wishbone. They greased the rubber catheter. They got to business.

While I struggled (and failed) not to shriek with rising panic, someone tried to deliver a dinner tray. He was told to stay out. He kept asking, “Does she want the tray or not?”

I screamed, “No, I don’t want the tray!” The catheter went in and about 1000 ml. of bloody urine shot out, enough to half fill the catheter bag. I was unable to sit after that. The pain was terrible, like I was a worm on a sharp fish hook. There was not enough morphine to take the edge off.

As the nurses left, I rested flat on my back, the I.V. carrying liquids in, the catheter carrying liquids out, and my bowel still reacting to chemotherapy.

Life was so miserable that I tried to watch midnight mass on TV to remind myself about the season. It was not on any channel. That seemed strange. I had been in the hospital two days and was only just learning that my clock was off by more than an hour. I was completely disoriented.

It would get worse. This was, after all, only the frying pan, not the fire.

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