Not Down Or Out

It could be worse. I might not be laughing.

Category: Weight

That Which Does Not Kill Me, Makes Me Stronger

As I was saying in my last post, the E.R. doctor identified my condition as a flesh-eating infection. It was not MRSA, thank goodness. But it was rare and life threatening. My memories of the first few days of my hospitalization are fuzzy. I was in great pain. I was being examined and tested and new diagnoses were coming in swiftly. I suddenly was diagnosed with diabetes. There was a chicken/egg aspect to it. Had my blood sugar gone out of whack due to the infection or had it been off the charts before the infection and made me more vulnerable to the infection? My blood pressure was climbing. Was this due to the stress I was under or was it a precursor to the infection? It was noted that the infection’s course seemed swift–even swifter than might be expected in the “normal” course of an abnormal condition. The nurses were hanging bags of fluids as fast as they could. I felt like I was one of those balloons at the Macy’s Thanksgiving Parade. Every inch of my skin seemed to be stretched as taut as it could be stretched.

I was prepped for surgery and do recall giving instructions that my sister had my power of attorney for healthcare purposes. She could make decisions for me if I was unable to make them.

My mom lives with me now. She is 80 years old. She had to move in with my sister and brother-in-law. We were all feeling upended and shaken by the situation. From my hospital bed, I could see a patch of sky that seemed so far away. Family members stood by the window and whispered softly. I handed over all of my belongings to my sister and wondered if we would ever see each other again. No one could say what the surgeons would find.

When the surgical team came for me, I was praying. How many times can we pray for someone to save us? I have decided that we can do it as many times as we need saving. It was icy cold in the operating room. The nurses and anesthesiologist were calm and friendly. They had questions for me. Could I help them transfer me from the transport cart to the operating table? When had I last taken water by mouth? Could I place my left arm just so on a board for that purpose? Did I have sleep apnea? Did I snore?

The temperature in the room felt good on my fevered flesh. I felt the first needle glide into the skin on my arm and I fell asleep.

That was the first of four abdominal surgeries. It was a protracted process to remove the infection. My surgeon was a plastic surgeon. He removed flesh from my right side to the left.  I was not closed up between surgeries. Instead, as I understand it, the opening that went from side to side was lined with cloth. I was bound up tightly and attached to a vacuum that kept drawing out blood and infection from the area. I was reopened as necessary. My wound needed debriding in much the same way as a burn might require it. Infected tissue, dead tissue, and other flesh had to be removed as it was identified.  The drain that was installed on me drew a pinkish jelly from me. I had a catheter. And, on that first night, after my surgery, I was left intubated in case I had to be rushed back to surgery.

My sister was unaware of that fact. She says she understood that I was being taken to the intensive care unit and the tube would be removed. But it was not. My first recollection post-surgery was that I was restrained at the wrists and ankles. I felt the tube in my throat. I panicked. I wanted to speak, but I could not. I was in a room with a sliding glass door, which was left open.

I heard things. I saw things out of the corner of my eye. I won’t trouble you with some of my memories, but they were disturbing. When I did get a nurse’s attention, she said to someone that I was receiving propofol. I could not be aware of my surroundings. I responded by struggling. I then heard someone say I was hysterical. I managed to yank my hand out of one restraint. I threw up fluid from my throat and had the unpleasant experience of having it coat my face and slide up my cheeks to my eyes. I did not understand that I was intubated. I remained panicked and wanted to speak out about things I was experiencing. Instead, I was drugged again to still my struggles.

It was a long night. I understand that my second operation took place in the morning without my awareness of it taking place.

I was more afraid during that long night than I was before I went in for surgery. In my hours of sleep or drugged awareness, I was in a black room with a black bird. The bird was huge, far bigger than I was, so not real. She had a small, beady eye the color of a raspberry. Her dark wings also were trimmed with narrow bands of the same color. She was regal in the darkness, but cruel, too. She pecked at my body with a long, narrow, black beak that tore at my flesh. I felt every piercing and called out to God for mercy.

Death seemed preferable to this punishment. I know I begged to be taken from the place in which I found myself. I cannot recall feeling any misgivings about that cry for the release death would represent. I cannot recall thinking of my family or my friends or my students or my work. I remember thinking that death would mean peace and escape from that pain. So . . . I do not think I imagined myself to be in HELL. I was suffering in this world and wanted to depart it.

We do not always get what we want.

After much suffering and even more begging for release, the bird disappeared, the room went dark, and something that looked like a turquoise and gold LP record spun into the room. The turquoise and gold pattern on the record resembled the symbol for yin and yang. There were words where the grooves would be in a record. I could not read them from my vantage point, but I could see the curves and lines of the letters. Then the record started to turn and the words became images and sounds and I saw events that had yet to occur. I saw myself awakening in a hospital bed. I heard my nurse saying she was logging onto the computer beside my bed using a specific password that was the same as the password of the nurse from the preceding shift–except she was going to add a two at the end. I saw myself learning to walk again. I saw myself wearing a hospital gown that was too big and yet managed not to cover me. I saw myself trying to work and finding it tough to focus visually and mentally. Some of the things I saw have not yet happened. But some of them have. I am finding it tough to recall some of what I saw as time goes by. Today I am almost three months from the start of my odyssey.

As the record came to an end a huge voice boomed out into the darkness: “Live more LIFE!”

I think it was God.

I woke up to see a nurse I recalled from what must have been intensive care on the night after my first surgery. In that first blinking assault of light it seemed that she was dressed in a uniform like the one Rosemary Clooney wore when she danced with Bing Crosby, Danny Kaye, and Vera-Ellen in White Christmas to the tune, “Hey, I Wish I Was Back in the Army.” Instead of being blue, it was khaki and she had an aviator’s white silk scarf around her neck.  When she moved her shoulders, I could see her wings. She was the yang to the dark bird’s yin.

In another instant I was able to focus and see her as she is–she is a nurse and not a bird. I was awake. I did not feel much like living, but I was alive.

I spent sixteen days in intensive care. I would later meet my infectious disease specialist, a woman of few words, who told me I had been a few hours “from the dustbin.” She told me that nothing made her happy. But my surgeon had made her happy. He made her very happy because he did everything the right way. She said I was lucky because Plan B would have been hospice care until death.

I cannot tell you how many antibiotics she prescribed for me. She ordered repeated blood tests and measured the profusion of infections in my blood. As I understand it, flesh-eating diseases like mine come from “common” infections like strep (usually strep), staph, or e-coli. These infections surround us. They are on our skin. But they seldom inhabit us without being let in, and a healthy immune system usually fights such infections off. In the case of the disease I had, that red spot on my abdomen had been a door left ajar. One of those “ordinary” infections was opportunistic. It crept in and took hold. She never did tell me which infection I had. I have the impression I had more than one. As my medical team continued to work on me there were two more surgeries and a last debriding.

Thanks to the brilliance of my doctors, I was declared infection-free by my surgeon on May 30. The infectious disease doctor concurred and took me off of antibiotics about two days later.

There is more story to tell, and I will tell it here. But for now I will say this: The infectious disease doctor has a working hypothesis that the disease entered at my abdomen where the scar from my hysterectomy was because the flesh there had figuratively become like a sponge and not like a solid. Chemotherapy and radiation might have converted what was fat into what was food for the infection. I had an infection that did not feed on air. It fed on bacteria. And the infected flesh bred bacteria and infection. So, in a way, cancer treatment (that which did not kill me) made me weaker and more vulnerable.

However, my infection spread through fat. It never spread beyond it. Unlike many who have contracted such an infection and were not treated in time, I did not die. Unlike many who have had the infection reach a body organ or a limb, mine did not spread and I will not suffer a permanent disability. I have seen different statistics since I got out of the hospital. Some speculate there are fewer than a thousand cases diagnosed each year. Untreated, the disease is fatal. Due to the difficulties of identifying the disease, I have seen statistics showing as many as 40% of cases end in death and another 40% of cases end with permanent disability. The flesh, tissue, or organs that becomes infected cannot be cured. It has to be removed. I appear to be in the 20% of cases that end well. So the porous fat that made me weaker ended up saving me. Had it not been there for the infection to consume, I might have been a fatality or a casualty of the infection.

That which did not kill me made me strong enough to survive. It appears I will have an opportunity to live more life.

 

 

Bruised (Part II)

My Friday appointment with a physician’s assistant (“P.A.”) in the Gynecology Department at the county hospital was a trial for which I knew I was unprepared. I was nervous about it and the P.A. kept deferring her examination to take a more complete medical history.

After what seemed like a very long time, the P.A. got up and helped me put my feet into the stirrups. She started to run warm water and explained that she would be rinsing the speculum so that it would not be cold when she used it. I was just about to lie back.

Then she changed her mind and decided to perform a general medical examination first.

She listened to my lungs, my heart, examined my breasts, examined my visible hernia, and palpated every place where lymph nodes may be found. Every once in a while I trembled, but I was able to arrest my fears with the certain knowledge that this examination could not possibly prove to be as bad as the last one.

At one point she discontinued her exam to go make more notes on the computer because I mentioned my aunt’s breast cancer. She scolded me so very kindly for leaving this out during the earlier discussion of medical history.

In the end, she did the exam. And it was not as bad as I imagined. Because I have been healing over the last fifteen months. I no longer have a raging bladder infection. My bowel is no longer newly burnt. According to my last CT it has become somewhat “hardened” by radiation. I figured everything else was going to be hardened, too, but there is some resilience left and some of it is emotional.

I will spare you the description except to say that some experiences are more disturbing because of how they are done and not because of what is done.

I felt (and still feel) that I was killed with kindness. I learned certain things about my post-surgical body that no one else explained to me in the last fifteen months. The P.A. commented throughout the exam. I’ll keep some of those lessons to myself. I did appreciate the information. I just found some aspects of the exam uncomfortable. I now wish that I had been more vocal about that. It was not something I could at the time articulate well.

It was not until Saturday that I could say much of anything about the entire experience. I kept asking myself if I had been overly sensitive. I kept replaying the kind words, the scolding tone, the repeated assurances that she treats all her patients like they were family,  and the seemingly intentional delay of the exam. I acknowledged that it was not the P.A. who walked me around the halls nearly naked. I was disappointed in myself for not asserting myself more forcefully. I was kicking myself for not having medical insurance and choices and living up to my own potential so that all of this could have been somehow avoided.

Tears started to leak from the corners of my eyes as the exam drew to a close. I wiped them away with a little embarrassment. It seemed important to the P.A. that I put in words that it had not been as bad as I imagined it would be–and it wasn’t bad the way I feared it would be. But I was so eager to get out of there.

She left me there in the stirrups while she went to find the never-to-be-seen Dr. Y. On her return she announced that he was satisfied with her report on my condition and did not feel the need to see me.

She helped me sit back up and told me that there were no visible signs of cancer’s return. Her practice is to not call if the tests done are negative. We discussed the fact that I don’t use text messages so, if she needs to report bad news, then she will call me and leave me a message telling me I need to come in to see her.

After that, she left me to dress, I cleaned up and tried to leave, but she was in the next room still typing notes on a computer. I went back to my examining room to wait for her to print out some papers for me.

She explained that I will need to have an internal examination every three months for three years, then every six months for two years, then every year. She told me how I should have my hernia fixed and that I should see the primary care physician soon.

Then she pulled out her candy bowl and asked me to choose a piece of candy. She explained that her brother loved candy. She offers some to all her patients. Some of them are diabetics and, particularly after the long wait in the clinic, their blood sugar is down and they are grateful for the treat. I could take as many pieces as I wanted. The bowl was filled with Mary-Janes (a very hard toffee that I haven’t seen in many years) but there were other things, too.

It all seemed very odd to me. After all of the kind comments and reminders about blood pressure, gallstones, diet, diabetes, cholesterol, and everything else, she offered me candy. I took a mini Baby Ruth and said, “I’m going to save this to remember you. See, there’s a little pocket here in my purse for it.”

We walked out to the nurses’ station and she explained that I could ask for her specifically on my return. Lots of people do that. I showed her the note I already had put in my open calendar. It was her name followed by the notation, “SO KIND.”

I have a headache today. I still feel unappreciative of the kindness and that bothers me a little because I have gotten so used to feeling grateful that it seems terrible to me that this seemingly nice woman has bothered me so much when she said the same sorts of things other medical professionals have without giving any offense.

When I spoke of the day with my mom on Saturday she recalled once reading that, in her lifetime, doctors would end up ruling the world. They would order all of us to eat certain things and not others. They would criticize our lifestyles and dictate to us about our behaviors and habits. “It’s come to pass,” she said.

I do these things in my professional life, too. I evaluate. I comment. I criticize. I compliment. I lecture. I intend to examine my own behaviors carefully and question my methodology. But first I need to get over the feeling that I have been bruised. No wounds were inflicted. It was such a subtle experience. It was SO KIND.

Bruised

I had an appointment with the gynecologist on Friday. It was my first “serious” examination since I underwent a hysterectomy in October of 2011. The only other time that anyone has examined me internally was in December of that year when I was in the emergency room for a rip-roaring bladder infection and the doctor wanted to take a “look-see.” At that time, it was less than three months after my surgery and a day after my twenty-fifth radiation session. If my bladder and bowel were burnt to a crisp by radiation, then the narrow length of flesh lying between them was still smouldering.

Back then they tattooed a big black “X” on my body and used it to line up their equipment. I know what that meant. My vagina was under direct attack. Back then I was glad that my mom had fled the ER before the doctor inserted his speculum because I screamed in pain. The last time I screamed like that I stood up in a theater and screamed because the alien had attached itself to a man’s face in the movie Alien.

I moaned and begged God for mercy during the aftermath of radiation when my bladder was racked with cramps and blood clots. I recall a long, keening sound coming out of me as two nurses struggled to insert a catheter into my body when nothing would pass through the urethra and I thought my bladder might explode under pressure. I have yelled while driving in my car. But, in that tiny bay in the ER, I screamed with so much fear and agony that I still cannot forget it.

So I was terrified at the prospect of another internal examination. I realized that I had time to heal. It could not possibly be as bad after a year of recovery. But fear is not always rational.

On Friday morning I got up at 5:00 a.m., showered, dressed, and headed out. It was cold outside–about 25 degrees outdoors. When I got to the hospital I sat in the car to wait for the elevators to open at 7:00 a.m. By the time I went inside I was frozen. But I forced myself to get moving because I told myself to face my fears and get over them.

I waited for the elevators to open. I was there so early that I had to wait for a nurse to open the doors to the waiting room. A receptionist greeted me and checked me right in. I was so tense and there was a young woman waiting there for an appointment with the Orthopedic Clinic. She suffered from a mental disability that prevented her from speaking in words. Instead, this young woman in her early twenties babbled. She shouted startling sounds. She ran around the waiting room. Her family was there to try to cajole her into staying in a seat. When she stood they tried to encircle her. They would pet her hair and shoulders as if she was a toddler. They comforted her when she cried. After she escaped their loving circle and curled up in a corner on the floor, a father figure huddled beside her with his arms around her.

I was thinking how doctors in the suburbs have a door for well children and another for sick children. What do such doctors do with healthy children with profound difficulty speaking? I have never seen a young adult in a public place with such a difficult-to-cajole personality. Her family’s love was so inspirational. One family member looked to be a younger sister. She wore white leggings and a white sweatshirt, like someone had pulled her from a cheerleading squad meeting. When the sister would run, this young woman bolted after her. It was like guarding in the NBA.

Young people’s dignity can be so fragile. This girl drew so many stares. I wondered what it must be like to be so visible when you felt awkward about what you were doing.

The same nurse who had so much trouble taking my blood pressure on Monday came out and we tried again. On the second try the machine worked. Again my blood pressure was uncharacteristically high. The nurse took me back to an examining room. She explained that the doctors were attending a “tumor” meeting and would be along shortly. Medical students would be the first to arrive. They would perform an internal examination. Then the doctor would stop by to meet me. It was cold in the examining room. She suggested I wait fifteen minutes before undressing and climbing up onto the examining table. There was a pad covering the step I would use to climb up. There was a paper gown to put on with the front open so that the medical student could examine my breasts for signs of cancer. There was a blue plastic blanket to spread over my lap while I waited.

She left me alone in the room. As always, I had papers to grade. But my nerves were getting the better of me. My teeth were chattering. My jaws ached from my efforts to clench them.

After fifteen minutes of waiting with my fears for company I undressed and climbed up onto the examining table to wait. I felt so vulnerable as I waited. This was going to happen. I wanted it to be over.  After another fifteen minutes the nurse came in and announced that I needed to move to another room. The paper gown was hardly adequate cover. It was open from throat to my knees. I needed the blue plastic sheet to shield the naughty bits of my body. I wore socks but no shoes. The nurse gathered some of my stuff, but not all of it. So I clutched my shoes and underwear, my paper gown, and my blue plastic sheet with nerveless fingers.

The nurse headed out into the hallway. I walked with the certainty that nothing was concealed. It was worse than when I walked around the Radiation Department with my cloth hospital gown caught up and my lower torso bared to the amusement of male patients. At least I was drugged with Benadryl that day.

The nurse instructed me to take a seat in another examining room until a third became available. “Don’t sit on the chair,” she cautioned. “Get that blue sheet beneath you so you don’t catch something.”

The cloth seat of the chair had a big black stain on it. I only had one free hand and it was holding that thin plastic sheet for dear life. Somehow I got it around my waist.

Several minutes later I followed the nurse back out into the hallway and down the hall to a third examining room. The effect that this had on my nerves was not pleasant. A slender woman in a white lab coat introduced herself to me while I held onto my clothes, shoes, purse, paper gown, and blue sheet. The nurse had set my book bag on the extra chair in the room. The physician’s assistant (“P.A.”) introduced herself and insisted on shaking my hand. To do that I had to let go of something. It was the last of my dignity.

“Get up on the examining table,” the woman instructed. “I’m going to get some information before we start. Then I’m going to examine you. Then I will present your case to Dr. Y. He may come in and meet you after that.”

Well, it was difficult to get up on that examining table when I was feeling a little demoralized. But I did my best. It was not good enough. She came over to direct me and we ended up tussling over the paper gown and the paper that covered the bottom of the examining table. The gown gave up the ghost. “Don’t worry about it,” she said. “As long as your posterior is on a covering so you don’t catch some infection.”

My feet did not quite touch the step after I was seated. I discussed the experience with Barb today. She said I should never have agreed to get naked before I met the doctor and felt comfortable. I think that would have been better than sitting there with only the blue sheet across my lap and the paper gown hanging from one shoulder. The rest of the torn paper gown was trapped beneath me.

I am direct. I said, “I have to tell you that I am terrified of having this exam today because the last time I had an internal exam it was too soon after surgery and radiation. It was so painful I screamed. I just want to get this over with.”

“You’re in the best of hands,” she assured me. “I’m very experienced at this and Dr. Y trusts me to handle matters. We’ll take good care of you.”

However, it turned out that the P.A., likes to get a thorough medical history. She started asking questions and checking for data on the computer. According to her there were no doctors’ notes to explain my history. I have watched as doctors entered notes, but no one asked as many questions as she did. I kept telling myself that she was being thorough. I was getting really good care. It was going to be okay. But the truth is that she was not easing my fears. I was becoming more nervous.

I was cold. My nose was starting to run. I had goosebumps on the red splotches that covered my limbs and torso. My back started to hurt. I thought my left foot was going numb.

When was my first period? When was my last? Had I been regular? Had I ever taken anything for that? How about hormone replacement therapy? What was the longest time I ever went between periods?

Had I ever had a child? A pregnancy? How did it end? Had I had a D&C?

How had my cancer been diagnosed? Did I have a biopsy? How much blood had I lost? How much blood did I take by transfusion? When was I admitted? When was my surgery? Who did the surgery? At what hospital was I treated? How did I end up at the county hospital? Who referred me to Dr. Y?

She asked about my surgery. What type of tumor was it? Size? Location? Secondary points of spread? Staging? Grade? Prognosis? Lymph node results?

What was my post-surgical experience? Had menopause begun within as few as 48 hours? How long did it last?

When did I start treatment? What was my treatment? Did I have external beam and/or internal radiation therapy? How did I respond?

She asked all the other questions one asks. She wanted to know about my medical history and the medical histories of my dad, mom, sister, and brother. “Do you know that you have gallstones?” she asked.

I nodded.

Thin as a rail this woman was, but she said to me in the heavyhanded manner of someone who enjoys being in charge, “We can’t have all the fatty fried foods we love so well, now can we?”

I resent the implication that being overweight makes me stupid, too. I don’t own a fryer. I have one small bottle of olive oil in my home. I doubt that I have touched it in nearly a year. I have been using the same tub of Smart Balance for more than a year. There’s a package of Snack Well cookies on my shelf that I bought last summer. There is not a french fry in my freezer.

“I see you had a recent blood test. Let’s see what we learned. Oh, I see your cholesterol is very good!” She turned to give me an encouraging look. It was difficult to be sure, but I started to get the impression that condescension was setting in. This was serious condescension. “Hmm, blood sugar safely normal. Surprising really.” She noted that my blood pressure was 160/95 twice that week.

“I am terrified of hearing the cancer is back and even more scared to be having this exam today,” I explained. “I just want to get it over.”

She ignored my nervousness. She had dozens of additional questions about my two medicines, my ongoing physical complaints, my weight, my height, the umbilical hernia that I have. My goosebumps had goosebumps.

In between bouts of questions she told me about herself, her brother who died of leukemia, how she started in brain research at University of Chicago, how she began handling trauma cases, and how she had gone from the brain to the reproductive organs (as if someone had flushed her life down the drain). Our birthdays are coming up. I am two years and four days older than she is. How the doctors were tough on her but helped her hone her skills.

Oh, even as I relive the experience my muscles are taut as bowstrings. I felt so vulnerable sitting there naked while she went on and on about her business. She was so cheerful. It was maddening. I was not myself.

Did I smoke? No. Did I drink? No. Not even a social drink? “No, I have had one sip of champagne for a friend’s birthday in the last three or four years.” She looked skeptical. Was there a problem with alcohol? No. What about prescription drugs? We again reviewed my two prescriptions. Marijuana? Other illegal drugs? No. She turned around to look at me. “I have to ask. You’re sure it’s nothing?”

“Nothing,” I answered. “I am a law professor. I wouldn’t dream of it.”

“Hmm.” She went on to explain that there was big bowl of candy on a piece of paper towel beneath her desk because her brother liked candy. This is how she keeps his memory alive. She keeps candy around.

She decided to refer me to a primary care doctor to discuss my high blood pressure, which she described as “out of control.” She decided to refer me to a surgeon to have my hernia repaired.

I never asked for these services. I just wanted to get the tests over with.

“Married or single?” she asked.

“Divorced.”

“Ever been a victim of domestic violence?”

“No,” I answered. She turned to look at me like she thought I was hiding something. “Really?”

“Really,” I was trying to get my mojo back, but the tension was not easing. “Both of us were lawyers,” I commented. “We abused each other legally.” It was a joke.

“Did you have any of the following?” She started with STD’s.

I said, “I’ve been abstinent since 1986.”

“That’s twenty-five years,” she commented as she clacked at her keyboard.

“More. Long enough to have avoided all those issues,” I said. “The only thing I’ve ever had to contend with is the cancer.”

I had been sitting there for half an hour and we had not started the examination. I wanted to demand we get it over with, but fifteen months of waiting for doctors’ care has taught me patience. And I was still so conscious of being naked. And I thought I was doing an adequate job of using my words. And I was afraid of the moment when she would insert the speculum. The suspense was unravelling my sense of self.

I met a woman while I was in law school who reminded me of the P.A. She was in my study group. She volunteered at a local animal shelter. She used to take in animals to nurse them back to health. We only met at her home once because it was unnerving to see all the sick birds and other animals roaming about the house. The other thing that made us uneasy was that she spoke so often about euthanizing animals that could not be placed with families.

I don’t know the P.A. well enough to say she is a sadist masquerading as a healer. But we did not get to the examination until she was good and ready. That is only one of three reasons why, after I got home that afternoon, I took two showers and went to bed for the rest of the afternoon. (Part II in the next installment).

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