Not Down Or Out

It could be worse. I might not be laughing.

Month: August, 2017

Walking Through the Pain

In the aftermath of my surgeries I remained in the intensive care unit with the nurses who became my support network and inspiration during treatment and recovery. Because I spent so long in intensive care at a relatively new suburban hospital, I spent the Memorial Day weekend and another weekend in the unit. There were several weekend days when I was the only patient in the unit. I had the experience of spending more than one twelve-hour shift with some of the nurses. On their return from days off, several would stop in to see how I was doing.

I remain very grateful for their excellent care. They fought for me when I lacked the strength to fight for myself. I promised them that I would return to express my gratitude after my discharge, and I did not wait too long to do that. I packed a bag of gifts for them and delivered it one morning. I was not allowed to enter the unit, but one of the nurses, Amy, and the hospital’s chaplain, came out to accept the gift. Amy and the chaplain remembered me. They hugged me and wished me well. I am guessing most people put experiences like mine behind them and do not return. I intend to come back again to let these wonderful nurses know that their work does more than save lives. They give their patients hope, peace, and medicine that does not come from a pharmacy.

Here’s the note I wrote to my nurses:

July 8, 2017 

Greetings to the outstanding nurses and staff in the Holy Cross Germantown Hospital Intensive Care Unit: 

It has now been a little over a month since I was discharged from your care after successful resolution of a flesh-eating infection and treatment for related conditions. I have been busy with home healthcare nurses, my follow-up appointments with Doctors Sailon and Jacobs, and other doctors.

I am happy to report that healing is going well. I have a pinched nerve in my neck for which I am being treated. I am under care for diabetes now, but I am doing well.

There are no words that can sufficiently express my gratitude for the care I received while in your unit. I am dropping off treats today, but they also cannot represent the emotions I feel. Your compassionate care during a time when I might have died and the positive outcome for my health and well-being are gifts I do not take for granted. Thanks to you and the medical professionals at Holy Cross Germantown, I have another chance at life. 

If I have forgotten anyone in the following list, I apologize for my faulty memory. In my sixteen days in the hospital, I underwent four surgeries and many challenges. But there was always a friendly voice and hand to help me. 

Shak: You were with me during some of the worst hours of my life. I still wake some mornings and recall how, after one of my surgeries, when I was coming out of anesthesia, I saw you standing there looking concerned for me, and it seemed as if you were some kind of squadron leader there to fight for me when I was unable to do it for myself. Bless you, that image is a source of great comfort.

Kwame: You encouraged me to walk and I did it. I still smile when I think of your coaching to face the day’s challenges. My motto in meeting those challenges was, if I have to walk through pain to make it out of here, then I will walk through that door. I did. Thank you for encouraging me when spirits were low.

Sophie: There was a night during my stay when I was afraid and in quite a bit of pain. Your voice of comfort soothed those concerns and still represents for me reassurance that things would be okay if I hung on.

Vivienne: How many times did you crack ice packs for me? I think you singlehandedly saved me from sweating into a pile of jelly with your patience and energy and caring on several nights when I could not seem to find relief.

Melanie: I think of you as the Martha Stewart of Holy Cross Germantown. If you recall, my room ended up being filled with chairs and commodes. I was the Goldilocks of hospital equipment. Some were too big, some too small, and some in need of repair. Most of the time, this equipment would crowd the walls so everyone could pass through and do their work, but, when you were my nurse, you would rearrange and make everything fit better and look better. It felt like it was going to be a good day as soon as you walked in during rounds to say hello and write your name on the board.

Yulie: You cared for me on so many occasions. I would get to the point in which I was exhausted, sweaty, and seemingly oozing with infection and you would come on duty, get me all cleaned up and tuck me back into that horrid bariatric bed, and I finally would sleep. You fought the bed company for me on a night when nothing else was going well and you got me installed into a better bed. I am so grateful that you never gave up in the battle to get me what I needed to recover.

Thinh: I had some tough reactions to some meds and you were there to keep me calm and track down a doctor to handle the matter in the middle of the night. You were there several nights and were so calm and reassuring that I made it past the rough situations. Thank you.

Rachel and Rachael: We were together through one of those nights when my bariatric bed proved to be a disaster. Not only did you persevere in the face of the challenges of keeping me comfortable, but you tackled that bed of torture and tried to get it to work. I also remember that night because of our wonderful talk about taking writing classes in pursuit of a degree and finding it tough to reconcile the writing teacher’s expectations with the reality of how intensive care nurses communicate with patients and others. The two modes of communication are not the same, and finding one challenging does not mean you are not an expert at communication. I learned from you and others in the unit that you have your own effective tools for saying what you need to in stressful circumstances. A soft touch to the face sometimes alerted me to the presence of my nurse without the need for any words. I learned that many of you discuss the outflow of stuff from patients’ bodies like strange foods’ consistencies. It works for you!  

In my package there is a bag with a book about how many schools teach history using books that do not tell the true story of how we treated indigenous populations. I still remember how your little boy was challenged at school for questioning the history books. I applaud your support of him. I can tell you that, as a lawyer, mine is one of many professions, in addition to your own, that value people who take on assumptions and test them. 

Lucy and Patty: Often stepping in to help me navigate in and out of bed. Tracking down a prescription. Helping to figure out what to do with the bariatric bed from hell. Bringing me more ice packs. Checking in on the way in or out of the shift. Thank you!

Holly: My last day I ended up wrapped in warm blankets from head-to-toe. Despite needing dozens of ice packs during my stay, the couple of hours you bundled me in warmth were a great source of comfort. I was about to leave and face recovery largely on my own at home, but I cherish the memory of my warm and fuzzy send-off. I felt ready. Thanks for that.

There are so many people to thank. My memory fails me at times as I try to remember specific days and shifts, but the following nurses and supervisors helped me, sometimes just answering my call button, sometimes for a shift, sometimes waving or cheering me on: Amy, Aurora, Bernadette, Christina, Christianne, Jericho, Julie, Sharon, Veronique, and Wooley. Michelle, you took my blood for glucose testing and were a ray of sunshine with your smile. I know you turn 21 in October. I hope you have that celebration (safe but fun) that we discussed—even if your friends are too young to go along.

I also have included in this package an envelope for Ms. Ermine, the woman who often cleaned my room. Please pass it on to her. I will never forget her many kind words of encouragement and advice. She stood in the hallway the first time I was able to walk that far and she cheered me on. What a fantastic woman she is! I am grateful for the opportunity to meet her during my stay.

Thank you again for all of your skill, talent, compassion, and care. I hope to put the extra time I will have on earth to good work thanks to you.

Hugs,

Cheryl

As my letter indicates, my nurses saw me through some tough times. I will write more about them and some of the challengs they helped me face in future posts. Thanks to them and the rest of my medical team, I was able to walk through my pain and leave the hospital to continue my recovery at home.

 

 

 

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.

 

 

What Does Not Kill Me . . . .

I recently had a five-year gynecological examination that found no evidence my endometrial cancer had returned. It was scary. I saw a new doctor in a new state and had insurance–for a change. I gave her a summary of my medical care from 2011. She performed a visual examination and took a pap smear. She told me that I should hear from her in about two weeks, if the tests showed any abnormality. If I heard nothing, then I had nothing to fear.

Of course I held my breath when she said that. I would face my fears again and again every day for those two weeks. On the last of those days, I felt brave and confident that I had survived for the five years that would reinforce my status as a survivor. Then I got a voicemail message that scared me. The doctor said that my test result was abnormal. She paused. It was a long pause.

My pulse raced. I heard my tinnitus rise in volume. I broke out in an oily sweat that wet the back of my neck in an instant. Cancer. It can return. It can come in a different form. It can lay waste to dreams and disturb peace of mind. It has left scars on my body and on my psyche. I knew I was strong enough to face whatever news was coming. That did not change my fear. It heightened it. I very much wanted to learn that I was okay.

I do not think of myself as having beaten cancer. I survive it. If it was an enemy that fought with me, I would have a battle with it. However, cancer is not like other enemies. It does not play fair. It hides. It uses tools you think are your own like your native strength (if it can), leaving you depleted for the next round of treatment.

I am grateful to God for my ongoing life. But I do not believe I was saved by my good behavior any more than I believe cancer is a punishment for bad behavior. It is just cancer–a disease for which we have treatments but not many cures. In my experience with cancer, I have been operated upon. Organs were removed. I have been subjected to radiation that burned what was a likely point for cancer to spread. I have been injected with chemotherapy drugs that scorched my cells in unforgettable ways. I have been treated, not cured. A cure would have left me well, not recovering with fingers crossed and my eyes focused on a calendar that seemed to pass before me very slowly. If I believed in earning my time here through good acts, I would be judging those who also receive a diagnosis of cancer and see time run out before it should. They no more deserve cancer than I did.

My doctor finally finished her message by saying that the results were abnormal because my cervix was removed back in 2011. She said I no longer needed to have this test. I can put behind me the fear that the cancer will return . . . there.

It still makes my temples pound to think about how I reacted to that long pause. Instead of relief when it ended, I felt something closer to grief. Surviving for five plus years what you fear very much is tough work. I cannot think of any comparable experience in my life. Sometime in the space of five and a half years from diagnosis to that physical exam I lost things I cannot regain–illusions, confidence, opportunities, resources, and more. I gained things, too, like friends’ and family’s support, perspective on what is important in life, and more.

I still had to go for a mammogram. No evidence of cancer there. I haven’t yet gone for my colonoscopy. Something else came up before I could make that appointment.

On May 15, I felt a small bump on my abdomen. It was red and painful. I made an appointment to see a doctor on the morning of May 17. Then I went back to the task that consumed me at the time. I read final exams of my law students and concluded grading my first-year law students’ papers. On May 16 I woke and realized that my pain was far worse than it was only a day earlier. Bands of pain seemed to cross from the right side of my body to the midline. I went to a meeting of our legal research and writing faculty at which we were going to discuss candidates for our law fellow program. I told my colleagues that I would appreciate our discussing my students early because, at the conclusion of the meeting, I would either drive home or to a hospital emergency room.

Traffic was heavy. I ended up going home and going right to bed. I gulped down some cold water and fell into a fitful sleep. When I woke, I felt hot, but I could not find my thermometer. I was not sure if I had a fever. I only knew that my small, red bump hurt like hell. I went back to bed.

At 5:30 the next morning the pain went from that single red bump to the left side of my abdomen. I knew something was very wrong, but I had no idea what it was that made me feel so overwhelmed by pain.

I called my sister and asked her to take me to the emergency room. I had a doctor’s appointment for later that morning, but a six-hour wait seemed interminable. We drove to the hospital.

The resident examined me and was stumped. She thought it might be advisable to send me home to let the red bump “fester” so there would be something to lance. I could not imagine waiting for my condition to worsen. It felt like it could not get much worse.

I am grateful that the E.R. doctor on duty came to evaluate me before any decision could be made. He recognized what the resident did not. I had a flesh-eating infection that already was advanced enough to threaten my life. He said he wanted to admit me, begin pushing antibiotics, and get me in front of a surgeon.

I had to ask myself whether I had survived cancer to die from a bizarre infection. At that point, I knew of only one other person who had ever had such an infection. He is a friend of my brother. He spent time in a coma, had a chunk of his chest removed to keep the infection from spreading to his heart, and had to go through kidney dialysis for some time after doctors halted the spread of his infection. He was lucky. Many who have had a flesh-eating infection have died. I had to wonder whether I could survive yet another dangerous condition. Had cancer left me strong enough to resist a deadly infection?

 

 

 

 

 

 

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