Not Down Or Out

It could be worse. I might not be laughing.

Tag: Pain

Taking Off

I had a bad surprise yesterday. My landlady for the last eight years announced I will need to move. My home is owned by her and her brother; and they have made a family decision to have me leave. She did not say it, but it sounds like a family member wants to live here.

I have never wanted to own my own home. I managed luxury hotels when I was in my twenties and had quite enough of property management. I used to enjoy moving, even looked forward to it as an adventure. My last move took a “day”–thanks to two immense moving trucks and five professional movers.

After I heard the news I got into my car and drove for about an hour because I hated the fact that my home was not really mine. The car will be paid off in less than a year–so it felt like mine as I drove in holiday “exodus” traffic.

I found myself wondering again about fate and about our capacity for steering in life. In the last two years my body has been treated for cancer–an ongoing event that has had me feeling alien in my own skin at times. After a gut-wrenching shedding of a massive amount of blood that left splash marks on my walls at home, I had parts of me excised. I have experienced what it feels like to have had nerves cut in surgery and (when the pain of surgery abated) to have no feeling whatsoever in the proximity of my incision. Then I subjected myself to radiation and chemotherapy that killed and damaged countless cells in an effort to root out the really sick ones. I have felt like every part of my body was strange (shedding, peeling, leaking, rushing out of or off of me). I lost much of my hair, eyelashes, and eyebrows. Blood ran from my nose every day for months (as well as from all of my other orifices). My nails bubbled and peeled. Even my own body smells changed for a time and I hated them.

I lost a loved job teaching part time at a law school for having been diagnosed with cancer. I have returned to work there, but nothing is the same except the students and how I feel about them. Just this week I was invited to teach again this fall. The invitation requires me to teach my fourteen classes and attend five (now) mandatory meetings. The list of the five dates of mandatory meetings was accidentally omitted. The invitation tells me that the school reserves the absolute discretion to terminate me at any time for no reason. The invitation omits any mention of compensation. Ordinarily, an offer of employment requires each party to promise something to the other. Here, what is promised to me is nothing. The email invitation laid bare the deal–if I return, I get nothing from the school.

The last bastion of peace and quiet in life has been home and we will soon be parted, too. I have so many “things” in this apartment. I will have to part with some of them, too, before this is over. Every move I have ever made has involved some shedding. But I have long thought of this place with the living room laid out like my Grandma Elsie’s, its sunny yellow walls, and silver and turquoise bathroom, as a haven. It will be very hard to pack it all up and move.

This coming week I finish three more classes. That will get me down to one online class. I was looking forward to the summer slowdown. I was hoping to write. I have not done reading for pleasure in months. I recently began work for a search firm–as an independent contractor–and hoped I would have the summer to devote to it. I even made plans to go on a short vacation–ten days with family and friends in DC. I will probably have to cancel the vacation. There may not be any time for writing or reading. I will have to juggle to not lose this new opportunity to stretch my wings with the search firm.

That’s what finally did it. That thought is what finally broke me down emotionally yesterday. It is what made me drive back to the apartment so as not to risk others’ lives by driving while in distress–distress that I felt to the roots of the hairs on my head and arms. I haven’t cried for what I have experienced during the last twenty-one months. I have cried through physical pain and suffering but never for having learned I had cancer. I did cry when I heard I lost my job. And I cried yesterday for the loss of my home and my plans and all the lost freedoms. I finally cried for the cancer, too. It was not for very long. It is not like me to cry for things or events. I cry for other people in pain and animals abandoned. But it was another form of shedding that I guess I had to experience because I will stretch my wings.

This entire dreadful, painful, frightening, awful experience has been about peeling away what is nonessential. It has been a wrenching agony since it began and I have hated it even as I marked how things have started to improve. The very foundations of who I am and what I want have been tested, shaken, and stripped away. Soon it will just be me.

I sent my friends in DC a message yesterday to let them know that I might not make it out to see them this summer. I realized as I sent them that message that I have lost family and friends in the last twenty-one months, too. My aunt and uncle died. There were friends who were not strong enough to walk with me through cancer treatment and dropped me. (I am intensely grateful for the many family and friends who did not jump ship.)

I have been very focused on images of birds, but maybe this is the story of a butterfly. Maybe I will take flight after the last of the shedding, peeling, stripping, and leaking of all but the essential me is complete.

I should end this posting there–on a positive note.

But I am NotDownOrOut and part of the essential me has to ask, “What the f*** is going on here?”

I See Dead People

“I see dead people.”

In the past couple of weeks I have not felt well. I don’t think anything is wrong. But I am tired. My body feels heavy and I have vague complaints that I hesitate to articulate because, by comparison with what I have endured in the recent past, they are minor. But I will confess here that the tingling in my hands sometimes drives me crazy. The ringing in my ears means that I have to be asleep to enjoy peace and quiet. I have blemishes every day after never having had them any more frequently than occasionally. I feel like a camel some days. I can carry about six pounds of water by bedtime and have it be gone by morning–not making for sound sleep. I take a water pill that seems to help with this, but yesterday evening one of my feet was like a balloon. (Can you have lymphedema if no lymph nodes were removed?) My blood pressure soars when I am upset, then settles back down to normal. But, when it’s soaring, my head pounds without pain, like when I’m sitting at a light beside a car that shakes the street with its bass notes. My joints seem to get better, then they go back to aching. Today it is my lower back that hurts. My fingernails recovered from chemotherapy months ago, but they are now back to peeling and there are little splashes of orange bubbles like when treatment was ended and my body was still recovering.

I think these are normal aches and pains, but the changes are things that bug me. It’s one thing to want to live to a ripe old age and another thing to do it. I wake up every day feeling so grateful for what has not happened to me that I push aside my complaints. But I find myself returning to the “woe-is-I” attitude from time-to-time. It’s like a torn nail that you cannot leave alone until you have torn it to the quick. Some bloggers talk about the “new normal.” Maybe I just need to accept that this is how it is now.

But today I realized that I am one of those people who cannot let go. I see dead people.

It does not take any particular skill. This afternoon I took a different path to school and passed the building where I worked in the 1990’s when a young coworker fell or jumped from the top of our office building. The description of his death as accidental was probably to ease his parents’ grief, but the building had several walls or barriers around the roof. He had to climb over several of them to fall. He was feeling overextended and tired from too much work. That happens to young professionals in large law firms. I feel tremendous sadness when I think of him because he had confided in me his distress and I had encouraged him to see the practice group leader and get help. Like many young professionals, he received a message that he should hang in there. That evening was when he fell. Someone said he was unrecognizable as a lawyer from our building when discovered on the street below. The suit did not distinguish him. Someone thought one of the city’s homeless men had been struck by a car.

When I see his face, it is in memories. But I recall boyish charm. He was a prodigy of sorts. He graduated from college and law school early. To this day I remember how he looked at a picture of The Creation of Adam by Michelangelo on the ceiling of the Sistine Chapel. http://www.history.com/this-day-in-history/sistine-chapel-ceiling-opens-to-public. I had been there recently and had shown off my travel photos to persons too kind to escape. This colleague saw God and Adam with arms outstretched toward each other and wondered aloud about the space between them. As I recall it, he wondered what it would be like to see them after that touch. He thought Adam would be transformed, unrecognizable. He thought the artist painted what was safe–a man–not one touched by God. I am haunted by those recollections as surely as if his spirit appeared to me. And I wonder what he felt when he touched the hand of God.

I think about my friend from Washington, DC who suddenly got it in her head to move to Tennessee to live near her mom and a sister. My friend had a young son and an ex-husband doing a little time for what I cannot recall. Once she decided to move she was hell bent on getting there as fast as possible. But she had no money or plan for doing it. I sent her a book by overnight express and stuck six one hundred dollar bills in between the pages. She barely made it home in time. Within a month, she had died of an aneurysm in her brain. She saw her son off to school and told her mom she was going to lie down for a nap because her head hurt. Her mom found her several hours later. They said she must have seen it coming because she had gotten up in church on Sunday and declared her faith in Jesus. I think she knew something. We spoke just days before she died about the money I sent her. She was very grateful and wanted to repay me but worried that it would take awhile. I “forgave” the debt because it seemed to bother her, and I was happy that she seemed happy when I said it–almost like her house was in order.

There was nothing funny about her death at such a young age, but I think of her every time I see Elvis because the preacher at her funeral (which had enough drama for the stage and deserves its own posting) remarked that, thanks to her having declared her faith before death, she was already in heaven. And that meant that she had seen the King–yes, Elvis. The preacher mentioned God softly, almost as a footnote, “Jesus, too.”

I think I see the first boy I ever loved when I drive down the street on which we lived way back when. His name was Michael and he was very sweet. We played as part of a neighborhood group, usually in people’s garages because the housing development was brand new and no one had shade trees yet. In our garage we had a cardboard kitchen set, which was “home.” Michael and I were the oldest, so we played the mom and dad. Like lots of kids, we brought to play what we saw at home. My mom muffled laughter one afternoon when Michael stomped into the garage and yelled at me, “Burnt mashed potatoes again! When a man comes home he needs fluffy potatoes on the table!” Talk like that in our house would have meant noodles until November.

Michael died in a motel room in what appears to have been a drug bust that went bad. By that time I lived far away and was no longer in touch with him or his family. But I still see him winding up with his bat when his dad was getting ready to pitch the ball. And he still looks way too young to be so long gone.

Some of the dead people I see are ghosts, too, but I can only lay claim to seeing a very few of them. They were strangers to me so I could not possibly tell you their stories. I can only tell you that when I think back on my life so far I keep wondering about what that young lawyer said about the painting on the ceiling of the Sistine Chapel. Did Michelangelo paint the scene before Adam touched the hand of God because it is impossible to imagine the scene after the contact? I have the feeling that once Adam touched the Lord he never looked back.

That’s the normal I want to find here on earth. I’m living in that space between Adam’s finger and God’s. Not giving up. Not ready to go. Not quite feeling that my time has run out too soon. I want the sense of mystery and adventure back. I don’t want to malinger when there’s work to be done. And I do believe there is work to be done with this time I have here. So, instead of looking back at people gone–including my pre-cancer self–I’m looking forward, one hand extended, hoping when I do find Him (maybe even before I find Him) that I will be transformed.

Getting Better

It has been another month since my hysterectomy. I continue to suffer many of the ill-effects of chemotherapy and radiation.

My knees have improved somewhat. I have been taking my Chemo Klenz and Rad-Tox homeopathic remedies. I also take a giant Osteo Bi-flex tablet once a day. I sleep in my bed because I can slide out of it down to the floor rather than struggling to rise from it (as I would have to if I slept on my couch). It used to take a count of sixty to climb a stair. Now I can make it up all the stairs to my home in about that time several days of the week. As the weather warms up I may do even better. The cold is not kind to my joints now. Spring may help.

I have body aches I never had before. My left rotator cuff sometimes hurts from sleeping in my bed rather than on my couch. My nose still bleeds some every day.  I still have a radiation burn on one thigh that has not quite healed. There are red marks where others have healed but not faded from sight or memory. But all of these discomforts have become “normal” after all of these months.

I keep a journal on the sink in my bathroom and mark down every visit there. I make a check mark. I add little scratch marks to show the level of pain I endure during those visits. There is one scratch mark for discomfort, a second for pain, and a third for real suffering. I can see that, even though I am in the bathroom at least twenty-four times a day, there are an increasing number of check marks without scratch marks. The pain, when I mark three scratches to record it, is still terrible. But I no longer cry over it. I still suffer from extreme urgency problems. I have become accustomed to wetting my pants because I seem incapable of stopping once I start. I now keep clean underwear in the bathroom for convenience. The truth is that I am learning to live with the changes in my body and even terrible pain.

That has taken a toll on my peronality. I am tired. I attempt to sleep for about eight or nine hours a day–even though I wake every hour.  I have more road rage. I have often rolled down my car window to yell, “GO INTO THE LIGHT!” I no longer laugh at myself when I do it. I gripe more. I give myself time at the end of most days to just sit, sometimes in the dark, and reflect on all that has happened to me. So much has happened that I already am losing my recollection of some of it while other events feel like wounds unable to heal.

I heard a song on the radio by Martina McBride “That’s What My Love Is For.” In it, a woman faces breast cancer with the support of her husband. She wishes the cancer had not taken from her things that have left her feeling like she is less than a woman. I have not had breast cancer or a mastectomy. But I remember being a teen when Lil, a dear family friend went through that surgery. Her husband Sten took my grandmother into their bedroom saying, “Look at what those doctors did to my Lil.” His voice nearly broke, not because they took what made her a woman, but because she was hurting and he could not bear to see her in pain.

My loss is not the same at all. And I am fifty-five, not thirty-eight like the woman in the song. But there are times when I feel less feminine now that I have lost my hair and grown a whole new patch of dark hair near my chin. Sometimes I feel a little sorry for myself. But that is getting better, too.

The thing about being fifty-five is that I don’t need my “reader” glasses to see that my eyelashes, eyebrows and hair are returning. I do need my 10X magnification mirror to see the new hairs on my chinny chin chin. I don’t need my little journal to know that my bladder is healing a little, but keeping it is a reminder that I still suffer quite often. When I sit in the dark contemplating my life these past few months, it seldom produces positive feelings. Soon I will ponder with the lights on and the shadows chased away. I listened to Martina sing, but I resisted going out to buy her album to spare myself the wallowing in sadness that comes from repeating the song.

I am not ready to stop paying attention to all these little signs of progress or suffering, but it must be a sign that I am getting better that I am considering dispensing with some of them.

The truth is that I am getting better.  I will pray that I continue to get better. I will eventually stop marking the negative events and focus only on the positive ones. That will be me getting back to “normal.”

The Urologist Has Spoken

As many of you know, one of my chief physical complaints following radiation and chemotherapy has been the painfulness of my bladder. The radiation has caused it to bleed, sometimes with large clots that are painful to pass. There is pain the many times a day that I eliminate–not a twinge or a twang. This is pain that makes me bite my lips and shudder to keep from crying out, often without success.

I recently underwent a procedure during which a urologist inserted a camera into the bladder and looked around. Then he filled the bladder with water, which water he withdrew for testing. The test revealed no abnormalities consistent with finding cancer there.

I have been trying to speak with the urologist ever since he left me a message to that effect. I wanted to know when I could expect the pain to abate. I continued to bleed and wondered when I could expect the bleeding to stop.

We finally spoke this morning and the news was not happy.

I have what I now understand to be a permanent condition called radiation cystitis. In layman’s terms, the bladder has been fried. In time, pain may abate for periods of time. However, it can and, more likely than not, will return. Pain and bleeding are commonplace. My pain management options–the orange pills that I found made my condition impossibly more painful in December or the astonishingly expensive and unhelpful Vesicare that we tried in January or the always recommended ibuprofen–are the treatments. That orange medicine was a pernicious little “poison.” When the pharmacist saw that I was to take it for a month, he was stunned. Perhaps not familiar with cancer treatment, he said the drug usually was not administered for more than a couple of days. The Vesicare’s sticker price caused sticker shock. The ibuprofen is not suited to addressing episodic pain.

There is a 60% chance of reducing bleeding if I take about 30 treatments in a hyperbaric chamber. No such chamber is available at my hospital, and I would have to pay for it myself. It would not address pain. (Paul has made the very gallant offer to help me pay for that treatment if I want it. Dear Lord, thank you for the friends you have sent me. I do not intend to accept his offer, but I am moved deeply by his impulse and his caring.) There is a 30% chance of some improvement if some formations in the bladder are “shaved” off during an invasive procedure some find painful, which would not be offered at this stage in my recovery even if I fancied another invasive procedure, which I do not.

Live with it, is the best advice for now.

I inquired as to whether internal radiation, which I currently am resisting, could make this worse. The radiation oncologist would have to answer that question and dosing could affect his judgment. The urologist could only speculate that the frying (my word choice) has been so thorough that it might make no difference at all. I see the oncologist, Dr. H, on February 27th. I have not gone to see the radiation oncologist since his department sent me to the ER in late December. That is the doctor who used hand gestures to explain the consequences of radiation. When I looked confused at his pointing to his crotch and hips, he explained he was not used to patients with my level of education.

I will be discussing this with my naturapath first. Rather than do nothing, I would like to think that I might find some way to manage my pain, short of daily medication, if not cure my condition. This was not happy news, but, as my doctors so frequently maintain, the alternative to action is cancer. That argument has induced me to do many things that may yet prevent a return of cancer. With time has come much wisdom. I think daily of the statement my father used (comedically) when we whined as kids: “Come over here, and I’ll give you something to cry about!”

Who seeks a steaming hot mustard plaster to address a bad cold any longer? How about a good bloodletting to address anemia? The field of medicine has come far, but, at its edges, it remains a field like world exploration before the discovery of the Americas. You set sail with hope and courage, but, in the back of your mind, there is a possibility that the world will prove flat and you will neither arrive at your intended destination nor return home. We set sail anyway, don’t we?

The nature of man can be to risk all to succeed. I pray that I have done so and not undergone so much pain and injury for naught. Speaking of prayers, anyone so inclined is welcome to pray for the abatement of pain. I already have begun yet another entreaty for spiritual intervention. So far, God has heard your many prayers and helped me through some very tough times. I pray now for the strength to “take” the medicine I asked for and doctors prescribed.

Rx: Kindness

On January 17th Kathy and I woke and prepared to drive downtown for my CT scan at the hospital. I was tired. I have not slept well in many weeks. Between hydrating, diuretics, stool softeners, and anti-spasmodic drugs like Vesicare, my body has no idea if it’s coming or going. Some nights I sleep ten minutes, sit on the toilet for ten minutes, then react to pain for ten minutes. There are nights when I wander my mom’s house because I cannot sleep at all. I do laundry. I fold towels and wash cloths. I check my email. I take my meds. I sway as I sit on the edge of the couch. I drop what I am holding. I pray that, if I fall, it will be back on the sofa and not on the floor. I would love to take a nap that lasted an hour instead of minutes.

Kathy drove downtown in the rain. It was the end of rush hour. Driving was slow. My diuretic had kicked in. We stopped at the McD’s on St. Charles Rd. so that I could run indoors and urinate. I passed enough blood that the toilet water was red afterward. There were several clots–all large. I sat in the car with both feet pressed to the floor because the pain was about 5 on a scale of 10 when I did nothing.

Once we reached the hospital we learned that the public parking garage was closed. We decided that Kathy would let me off and drive to Barb’s home to wait for news I was done. Thank goodness for Barb, her spare key, and Kathy’s GPS.

I went to the Fantus Clinic across the street from the hospital. It is a very sad place. The facility is old and filthy. It is packed with people requiring assistance to maintain their health. I did not have a precise destination–thanks to Robocall. Several people directed me to leave the building and walk around it to find another entrance. By that time it was snowing and I had left my coat in Mom’s car. I walked around the building until I found the CT scan offices.

They expected me. I signed some papers and was directed to a waiting room where we were seated a few feet from a TV that told the story of Robin Antim and the Pussycat Dolls. I am sick of daytime TV, particularly when the subject matter is “celebrity.” Beautiful women who can sing make it big by doing so in lingerie. Is this new? Are we impressed because a woman created the franchise?

A technician handed me an immense bottle of sterile water and a cup. “Drink it. All of it.”

My body flinched at the thought of so much water interacting with a diuretic and a wounded bladder. I guzzled it anyway. It was like watching a chemo drug drip into an I.V. port. You want to say, no, but what is your alternative?

I was instructed to take a seat in a nurse’s office. She asked me if I suffered from numerous conditions. Then she installed a port for an I.V. in my right arm, right where it bends. I was directed to a room with four dressing rooms. I took off my bra and put it in my purse. I went back to waiting.

By the time I was called to the scan room, I was sweating over the strain on my bladder. I sat on a table, reclined, put my arms over my head, and tried to relax. The technician hooked me up to the I.V. of contrasting fluid. The technician withdrew. Robotest instructed me to hold my breath and then release it while it moved me back and forth through a doughnut-shaped scanner.

I eventually tried to communicate with the technician that I had to urinate. He did not respond. When the exam was complete I scurried to the bathroom to relieve the pressure on my bladder. The janitor was there cleaning. When he left, he left a sink filled with opened wet wipes and used paper towels. The trash can was empty and some trash had been shoved toward corners. The floor was dirty.

The nurse removed the I.V. port and told me to try to flush the I.V. drug out of body A.S.A.P.

I put on my bra and sweater and braved the snow and wind to walk around the clinic to another entrance. I needed to go to the third floor to have a blood and urine test. I was in that lab once before Christmas. Now I was there after the Martin Luther King holiday. The room was packed. I was assigned number 424. The phlebotomist was calling people with numbers in the mid-300’s. I asked for the urine sample cup before going to the bathroom. The clerk, at first, wanted me to hold it, but relented. However, I would have to hold my cup until after my blood test. I knew I needed to catch the fluid when it passed. I have not yet learned to urinate on demand.

I entered a bathroom so filthy it took my breath away. Someone had consumed part of a sandwich but had thrown crusts on the floor. Someone else had smashed them beneath her shoes into the tile. An immense roll of toilet paper was tied with a garbage bag to the handle on the wall. The sinks were choked with used paper towels. A passway connected the bathroom to the lab. You could place a labeled sample in the passway for collection by technicians.

I hung my purse around my neck, collected my sample, washed my hands and left. I waited in the waiting room for nearly two hours. The clerks did not face us as we entered the lab. The one who checked me in looked like the mom on Everybody Hates Chris. She wrote with a pen with orange feathers attached to the end of it. It looked like a feather duster. It probably represented a whimsical personality, but, in that crowded, dirty, germ-filled environment, the orange feathers looked like a few strands of tinsel on a homeless man’s carboard sleeping box.

People coughed incessantly. At times it felt like the mass of people among whom I sat drew in breath and exhaled together, passing their germs like the wave at a sporting event. There was a woman with an unruly toddler and a baby in a car seat. She three times left the baby in line to run after the toddler. A man watched a movie on a DVD player. The noise was distracting. Two-thirds of the room was the pick-up place for prescriptions. Roboannouncer told us every two seconds what numbered customer was being assisted at what number window. The crowd was mostly African American and Hispanic. I counted four Caucasians–one wore his hair ZZTop length, tied with a piece of leather at the nape of his neck. He wore a cowboy hat and a leather vest. He wore a gold ring on every finger. A handsome young man looked fit in his navy sweats. Two other women wandered, seeming incapable of waiting in a seat. Many people spoke foreign languages. People shouted in English instructions that volume could not render intelligible to folks foreign born.

By the time my number was called, I was exhausted.

They lined us up on plastic chairs. Someone called out that we should take off coats, roll up sleeves, and have our paperwork in hand. I was called by number to a tiny room with a phlebotomist.

The phlebotomist verified my name and date of birth. Then she addressed me by my first name.

It was the first time I had been addressed that way in weeks other than when meeting with my oncologist.

I actually felt my eyes fill up with tears.

She needed to stick me three times to finish the blood test. She could not locate the label for my urine sample and kept me waiting while she obtained a new one, but I don’t care about any of that.

Most of us are judged by small acts. We do not often save lives or poison the town’s water supply. I spent the rest of the day thinking about the importance of a smile, a name, and a kind word. On January 17th I spent three and a half hours at the hospital to get three tests done. The healing I experienced was from a “prescription” handed out in the tiny room occupied by a phlebotomist. She handed out kindness like it was commonplace. It is not. But a little kndness goes a long way.

Robocall

On January 16th, I rested under a blanket on my mom’s living room couch with a heating pad on my knees. I have been holding water in my limbs and have been taking a diuretic, but water still collects and causes pain as I move.

My cell phone rang. I answered and learned by a robot call that I have an appointment for a CAT scan tomorrow at 11:15 a.m. in the Fantus Clinic. It was news to me.

The dehumanization of patients begins with the dehumanization of hospital workers. If the making of an appointment is dictated by a machine, then it tells the patient that your time does not matter, ergo you do not matter. It also tells people with excellent telephone skills that their jobs can be performed better by unfeeling machines that do not engage in give and take. We should not be placing all of the blame for the incivility of texters on the texters. They are responding to a society that no longer values the service inherent in a personal phone call.

As it happens, I am available Tuesday at 11:15 a.m., but it makes for an extraordinarily long day. I teach Tuesday night at Naperville, a long way from the hospital. I have work responsibilities every day of this week. Had they wanted me to come at the same time on Wednesday, I could not be there. Wouldn’t all of us feel better if we treated each other to some old-fashioned one-on-one communication?

Machines are everywhere for our convenience. There are toilets that flush every time I move while hovering over a toilet seat. I think such a machine caused cross-contamination of my bowel to my urinary tract (not that I can prove that). A machine emits soap or disinfectant or heat when I move my hands under a soap dispenser, disinfectant dispenser, or hands drier. How are those things working for you? I see more soap on sinks and bathroom floors than ever. Doesn’t the hands drier draw air from a filthy floor to dry my newly cleaned hands?

I recently spent days of “quality time” hooked up to I.V. poles and liquids. The machines were fancy. They told me what drug I received, the speed of delivery and if the equipment operated unimpeded. Did I require this information? No. My nurses did. Did they get it? No, not unless they came to shut off a beeping alarm because the line was occluded or the I.V. bag was empty. The beeping woke me from fitful sleep. It startled me when I was close to drowsing. I learned to shut it up for short periods of time. It alerted me that I needed care. My nurses rarely heard it. To summon a nurse I still needed to ring a call button. Someone would answer. I would wait, with the alarm beeping, for someone to come by to resolve the issue. On many occasions a nurse would come turn off my call button and then leave me waiting even longer with the I.V. beeping, until someone else could return to fix the problem. The end result was that the new equipment served as a reminder that I was getting less than prompt or effective care.

I recognize that the public has become increasingly “rough” on service people who call on the telephone. I have prefaced calls to service personnel with an acknowledgement that I am angry at someone else in an organization. I have seen horrific news reports about people with guns lashing out against strangers in an organization that did some “wrong.” Folks get killed for giving the finger or shouting an epithet. The persons shouting loudest about their need to be respected sometimes show no respect to others. We are quick to escalate our matters, raise our voices, and pound our podiums when we do not get what we want. In politics we have elevated to public office people who will say “no” to any options other than those that serve their narrow agendas. A representative democracy has become an explanation for incivility between the elected representatives of a city, a state, or a nation.

I don’t care for the idea of making appointments by dictating day and time by robocall. I prefer to speak with a live person at a place of business. I like to flush my own toilet and dispense soap. I wish I could call and speak with a service person who cares whether I remain a customer. I hope my elected representatives can listen to other points of view and help generate compromises that resolve problems rather than polarizing issues.

If anyone is listening, I wish that Hal would open the pod door for me. I’m ready to get off this robot-driven, life’s conveyor belt. If you care to speak, then I care enough to answer your call and talk about it.

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.

Petri Dish

On December 22nd I returned to the hospital for my final radiation appointment. I was exhausted from the pain in my bladder and bowel. The lab technicians had stopped covering my tattoos with adhesive tape as the skin around the tape had started to break down. I passed blood and blood clots each time I urinated. The medicines supplied to me were not strong enough to ease my suffering.

The radiation nurse sent me across the street to the Fantus Clinic for a urine analysis. It felt like punishment. I walked through an underground tunnel and rode an elevator to the third floor. I then entered a waiting room that reminded me of the waiting room in the movie Beetlejuice. Four staffers sat in a small space passing orders and personal information for patients. I eventually crouched over a toilet in a cramped space trying to fill a plastic cup with the murky red liquid fire that passed for urine. I left with a prescription for a weak dose of Vicodin. I did not feel like I had anything to celebrate.

The next day I received a call at 8 a.m. The radiation nurse wanted me to come back to the hospital. I had a raging infection in the urinary tract. She suggested that I might need to be admitted to get me through the weekend.

I could not drive myself. I was at my mom’s home and she could not drive me to the hospital and be certain she could find her way home. At seventy-five, she does very well, but she had yet to visit the hospital. She called for a cab for me even though the prospect of a $60 fare made her nauseated. It took quite awhile to find a cab. Once we did, I was prepared to go alone, but my mom was reluctant to send me off alone. We went downtown together.

At the hospital, I was placed on a gurney and the nurse wheeled me to the emergency room. I had to remind the nurse to slow down as she was leaving Mom in the dust. We spent several hours in the ER waiting for me to be admitted for tests. I rested on my gurney in a postage-stamp-sized curtained exam area. My mom sat someplace in the hall. When Mom had waited as long as she could, she found me and announced, “It is 1:30.” It was plain that she needed to get out fast. I explained how to reach the cab driver, who had offered to return for us. She had difficulty finding even the ER exit on her own. Nevertheless, she was eager to leave. It was all too much for her.

The cab driver, upon learning that Mom was waiting for him at the ER doors, sent two friends of his to pick Mom up and drive her home. He did not want her to wait alone or out in the cold. The two women who drove Mom home were not cab drivers. They were just Good Samaritans.

I gave another murky urine sample for analysis. Then the ER doctor decided to perform an internal exam–speculum and all. I alerted him to the fact that nothing had traversed that particularly tortured length of flesh since my surgery, but he felt it necessary to proceed. I nearly passed out from the pain. I managed not to swear, but I could not contain a long keening exclamation as my flesh faced new outrage. I have read about people experiencing a different state of consciousness during great pain. I did not achieve such a state of protection. I bled for some time after this procedure. My ER nurse made about seven tries at setting up an I.V. for me. She had trouble finding a vein and did not want to admit it. I can handle needles after three months of treatments, but I was on edge after so much painful poking and prodding.

It was after 6 p.m. when I was taken upstairs to a room. I was too late for dinner, had not eaten all day. I was helped into a hospital bed, hooked up to an I.V. of saline and another of antibiotics. I felt like something that grew in a petri dish. I still had painful bleeding in the urinary tract. I bled vaginally. I had post-chemo diarrhea. I was tied to an I.V. pole. I could not sit and hated to lie on my back. My socks were filthy from wearing them like slippers.

I ran out of toilet paper during the middle of the night and was told none would be available until the next morning. It was barbaric to handle my physical complaints with tissues and paper towels. By the next morning, I was feeling worse, not better. My torture had only begun.

%d bloggers like this: