Not Down Or Out

It could be worse. I might not be laughing.

Month: February, 2013

Voice Over

I needed to refill a prescription for a diuretic I am taking. Imagine taking a diuretic while taking a drug like Vesicare to keep my pipes from springing a leak. As in my own field of law, the medical profession seems intent upon engaging in inconsistent behaviors.

I called in the request for the refill last week. It takes three to five business days to get a refill. On Monday morning I woke at 5:00 a.m. and headed for the hospital. It was cold outdoors, but not as bad as it has been. My car’s thermostat read 28 degrees as I backed into the alley and proceeded to drive in the icy ruts left from the last good snow.

I got a good parking space and hunched down in my seat to wait until the elevators would open at 7:00 a.m. It soon became a bad space as someone parked an enormous SUV next to my Kia Soul. The other driver did not see me there. She wound down her window and bent my side view mirror in toward my car so she could open her door. Then she wriggled and shimmied her way out of that beast. She left even less room between the back ends of our vehicles. She used her coat to wipe the salt residue from my car as she squeezed her way out. Then she saw my reflection in my driver’s side mirror. I think she jumped a foot in the air, shrugged, and kept on going.

When I got out I had to appreciate the way she had parked. She had left plenty of room on the passenger side of her car and was about as close to my car as she could get and still exit. I had to hope that I would depart before her to make sure she did not clip me when she exited.

Fantus Clinic is across the street from the hospital. I waited for a few minutes in the hospital’s waiting area before making the crossing. The radiation patients had already gone downstairs so I missed Joyce. She has 18 more radiation sessions before surgery. I still say all of the time that she is 100% cancer free and has no signs of lymphedema. She, like me, has been working full-time through her treatments. Every time we talk I feel how strong she is.

There was a man in the corner with his coat over his head. Another man snored so loudly that I heard him from a great distance. Outside a man studied the discarded cigarette butts, found one, and lit it. That has to be the grossest thing I have seen in the grossest hospital that I have ever visited. Everyone there is sick with something. The sidewalk is covered with old butts and green chemicals used to melt ice. If there had been a machine in the vicinity I would have paid for a pack of cigarettes for him. It would have been the lesser of the two evils.

That sight made me want to go outside for fresh air and a short hike the rest of the way to the clinic. When I got there I pulled a number–B021. There are A numbers for people dropping off a prescription and B numbers for people picking up a prescription.

Someone had realigned the seats in the first floor waiting area. They usually are in parallel rows with space at each end for people to come around from either side. Now the seats go to the windows. A new row of seats faces the windows and blocks the waiting area off from the hall that separates the waiting area from the glass-protected clerks’ stations. There is a TV at one end of the waiting area. There are two sign boards that tell you a number called and the Window at which that number will be served.

Where are eight windows. Window 1 is where someone collects cash. Windows 2-6 are for drop-offs. Windows 7-8 are for pick-ups. The number dispensers are between Windows 6 and 7. All windows were closed.

The windows should open at 8:00 a.m. and remain open until 7:00 p.m. They opened at about 8:15 a.m. By that time there were close to fifty people waiting. The public address service that usually announces that A01 is now served at Window 5 (and then repeats the information in Spanish) was out of order.

There were four windows open. Two for drop-offs and one for pick-ups. The people in the drop-off windows would yell from behind glass, “A01 to Window 4.” Most people got the idea. And drop-offs are quick. It got confusing when someone wanted to call B numbers because the two women at Windows 7 and 8 kept forgetting to call the B. So people who missed the A calls started going to B windows and vice versa. Sometimes the numbers and windows got posted on the signboards–sometimes not.

Fox News was warning of a storm on Tuesday. There was an elderly African American woman with a walker. Everyone seemed to know her. People would arrive and go to kiss and hug her. She told them to call their mamas or visit their baby mamas. She told a few young men to get jobs and help support their families. She held court in the third row from the TV. That was close to Windows 6 and 7. It was too loud. No one could hear their numbers.

Window 1 opened for ten minutes then closed as the employee left for a coffee break. If you were picking up a prescription, then you went to Window 6 or 7, showed a valid picture I.D., signed a smart card machine with a stylus, and got a piece of paper. You took the paper to Window 1 and waited for the missing clerk’s return.

Then you paid for your prescription. The Window 1 clerk would stamp the paper and make it a receipt. You would go back to Window 7 or 8 and wait for a lull in new pick-up calls. You exchanged your receipt for your prescription and left.

That lasted for about a half hour. Then the pick-up clerks decided that the wrong people were coming to their windows. So one came out with a notepad. She called B numbers and checked your picture I.D. She wrote down your name. Then you went back to waiting. She would then call your name and you would go to Window 7. We were down to one clerk processing the pick-ups as the other clerk was collecting numbers and names.

The prescription area is by the clinic’s front door. Everyone was arriving and leaving by passing through this area. It is noisy and crowded. As the clerk from Window 8 announced, “You see it. We’re having some problems without a sound system. That’s right. We’re having some problems. Get over it.”

If it was hard to hear your number, it was harder to hear your name. The place was like a foreign airport. No one was called Smith or Jones. Half of the waiting patients were senior citizens who were “hard of hearing.” It was like being in a subway tunnel when a train is coming. Every time a name was called, others would announce it. There was movement as people tried to exit through the new choke points created by adding a row of chairs between the waiting area and the hallway. People kept getting in the wrong lines. People were waiting for Window 1 to reopen. The line at Window 1 had to bend and run along the hall wall so that people passing through could pass.

By the time I made it to Window 1, the absence of the missing clerk had caused some to give up. They had gone back to the waiting area to sit. I waited behind a man dressed for work on a construction site. He was tapping his toes. “She’s probably on a bathroom break,” he told me.

She returned with a cup of hot coffee from the coffee stand across the street at the hospital. She did not have a key so could not get back into the office. She went to stand in the line at Window 5 to ask the clerk to let her in.

Some of the waiting people had yet to figure out what was happening. Someone started mumbling about people cutting into line. They meant the clerk for Window 1.

It took two and half hours to pick up my prescription. It took another thirty minutes to get my car and exit the parking garage because someone got into the line of people waiting to pay to exit and then said she did not want to pay and leave. So the parking attendant had to come out of her booth and direct all of the rest of us to back up so the driver could back up and continue circling in search of a parking space. No one wanted to back up and there were about seven cars waiting. Most of us wanted to punish the confused driver at the head of the line.

The parking lot attendant had the sunniest of dispositions. She said, “Thank you for waiting, Miss. Today we are handing out the finest waits you’ll find in these parts. You may just want to re-enter to get a second wait while they last.” I paid for my parking and drove out into the street. The last thing on my mind was a longing for more fine waiting.

Bruised (Part III)

I still don't know who chews on the hospital's chairs.

I still don’t know who chews on the hospital’s chairs.

I proceeded to the CareLink charity office and waited in line for a number so that I could reapply for charity status. There were not as many people waiting at 10:30 a.m. on a Friday morning. I was number 469 and the office was serving number 458.

I took a seat inside the interior waiting room and tried to grade papers, but I had trouble concentrating. I just stared at the pages and ended up proofreading for typos instead of doing any serious reading.

There were many people waiting in the twenty-seven available chairs, but there were empty chairs, too. Some people were in a militant mood. There were two adult women in long dresses with their hair concealed by elaborate headscarves. They had not obtained a number at the desk out in the lobby and had waited for some time. They wanted someone to serve them without a number. No matter how many times they tried to get served without a white ticket, the staff declined to serve them. Sometimes voices rose. I believe one of them finally went outside to get a number.

There were many people with numbers on green tickets. They needed someone to approve a discount or fee waiver on their prescriptions. This was bothering some of them. You have to go to the pharmacy to claim your drug (a task that can take an hour, two, or three), get a sheet of paper that shows the fee for the prescription, take that to the CareLink office, wait for approval of the fee waiver, then go back to the pharmacy to collect your meds. Some people pick up prescriptions in the same building as the charity office (people being released from the hospital or dropping off first-time prescriptions). Some people have to cross the street to the Fantus Clinic. It was cold outdoors and the winds were punishing. Some of the folks waiting were on crutches, in wheelchairs, or carrying luggage.

Only one employee was on hand to approve these waivers. Sometimes other employees came out to approve enough waivers to keep the crowd’s size under control. Then they went back to their cubicles to handle people with previously set appointments and people like me with handwritten white “tickets.” My “ticket” was a red ink number on a piece of white paper the size of a fortune from a fortune cookie. I kept tucking it into safe places and it kept coming loose. I think it was an omen, but I tend to ignore them. One man was incredibly “antsy.” He kept getting up and inquiring whether he could be next. The answer was no. He sat in a chair in front of an empty cubicle, rose, knocked the chair over, righted it, sat down again, studied his smartphone, eavesdropped on the meeting taking place in the next cubicle, studied his watch, observed a woman wearing a long down coat, carrying a rolling suitcase, talking to herself, coughing without covering her mouth, until she began watching him.

As I sat there I observed the crowd. There were a husband and wife with three young children. They had number 468. They sat beside me. They entertained those kids, including an infant, and you hardly heard a peep from them. There was a beautiful woman waiting with a younger woman who might have been her daughter. The older woman had very long brown hair worn in a long ponytail bound periodically with bands. There was a bun wrapped around the top of the ponytail. She had wrapped a silver cord around the base of the bun. The back of her cinnamon-colored winter coat was decorated with black leather medallions to which some other decorations were affixed. It looked like a design from a palace in some Moorish country. There were tiny black stones decorating her collar, too. She wore reading glasses down low on her nose. Her skin was so fair that her freckles looked like pieces of bronze. She was very angry that the wait was so long. I could not make out her words, but she scolded folks regularly. She sometimes got up and escorted her companion out to the first waiting room. Then they returned and continued waiting.

A man in a motorized wheelchair wheeled alongside me at one point. He wore an immense white and black fur hat like a hunter might wear, if he bagged some Siberian white tiger. Because he came up to my side I got a good look at it and believe it might have been real. He also wore a mink jacket with a fur-lined hood. It looked velvet soft and was the most incredible shade of brown. He was a big man, very tall, and, of course, bundled up. He had a lovely smile and lively eyes. His voice was cocoa with whipped cream and a cherry on top warm as he patted my arm and said in a very loud voice, “I just have to say that I am loving your haircut.”

“Thank you.”

“It is just a pleasure to get to look at.” He looked around the room, “No one else seems to have taken hair as seriously as you have. This is one of the best times of my day, let me tell you!”

I thanked him again. He motored away and I saw that, hanging from the back of his chair was one of those yellow and reflective tape vests that road workers wear. It read: “Watch Me For Safety.”

Of course, he proceeded to go to one of the cubicles to demand service. It was so startling to have him publicly compliment my hair one minute and then go batsh*t crazy on some poor charity representative. I thought they were going to call security as things escalated, but a woman with a forceful cloak of authority told him that his needs required special handling and he would be served immediately if he would head immediately to Room 1317. He left as fast as his motorized wheelchair could take him and did not return. As he approached the heavy metal doors to the lobby waiting area, he lifted one foot and kicked the thing open. I think everyone flinched because those doors have no windows and open out so newcomers are always on the other side of them trying to figure out whether to pull or push. No one got hit.

At 10:40 a.m. we were up to number 464. That was incredible. Of course, people started taking lunch breaks. So it slowed down. But breaks appeared to be very short. At 11:10 a.m. staff called 466 and 467. At 11:15 a.m. someone called 468. I was next.

It took sometime for my number to be called. The charity’s staff seemed to be enjoying a Friday moment. As people started getting a tiny bit unruly the staff started repeating certain comments in soft voices and the message began to work its way to where I sat like a game of Telephone.

“He says he’s been waitin’.”

“She says she’s got things to do.”

“He’s got a job to get to.”

In the end I was called. Based on my current income, which is actually lower than it was back in 2011, I qualified for a 25% discount on hospital services. What hurt me was the DePaul did not pay me for my fall paralegal classes in the last payroll period of December. Then it did not pay me for the first payroll period in January. It arbitrarily decided to change the customary schedule for paying “contracts” with people who it treats as employees for payroll purposes and independent contractors when it feels like it. So the most recent pay stub I had showed me as earning much more in one payroll period than I ordinarily do. I also taught a 12-week class in 8 weeks for another school during January. That upped my monthly pay over what it usually is.

I felt really bad for some reason. It was like DePaul took another swing at me, when it really did not mean to do that. An employer’s arbitrary altering of a pay schedule to suit its purposes is a regular event for many adjuncts.

I probably should have waited for a February pay stub showing only the halved fee paid for teaching Transactional Drafting. But I was not trying to “work the system.” I will just keep working on getting a quote for insurance from someone and hope I can cover 75% of the cost of the three doctors’ appointments, five blood tests, and pap test I already have had since the last week of January. I have 30 days to appeal the determination. Maybe my pay stubs will better reflect my circumstances in that time.

In any case, I won’t be scheduling any operations for this year. I have experienced enough “tinkering” in the last fifteen months. I am resourceful and still have people to call and options to explore. And I am feeling much better than I did when this experience began. I am still grateful for the doctor who diagnosed me. I am grateful to the excellent hospital, doctors, and professional staff who operated on me. I value the thoughtful care given by my oncologist and feel lucky to have had her wise advice in making decisions that will affect me for the rest of my life. I think my oncology nurses and the phlebotomist who helped me through chemotherapy were excellent people. I owe an immense debt of gratitude to the two charities that covered so many elements of my medical care. I am grateful to my county, its hospital, and all the excellent people I have encountered there for having resources for people like me.

I have family, friends, and faith that things will turn out well. And I still have my sense of humor.

I remain Not Down or Out.

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).

Etiquette

DePaul University has invited me to obtain a certificate in diversity skills. The first segment of the certificate program deals with the “etiquette” of dealing with disabilities. Having been terminated for having cancer (arguably a disability), I am very interested in anything the university has to say about the subject, including anything it has to say about doing it politely. This is part of the email sent to me:

“Dear Colleagues,

“The Office of Institutional Diversity and Equity is pleased to announce the launch of B.U.I.L.D., a professional development diversity certificate program available to all faculty and staff.  B.U.I.L.D provides participants with the “building blocks to an inclusive campus”, by:

  • Building multicultural competencies
  • Understanding differences and how it impacts the workplace
  • Inclusive excellence
  • Leveraging Diversity and building Leadership capacity
  • Developing measures of success

“The B.U.I.L.D. Diversity Certificate program reflects DePaul University’s commitment to create a learning culture that values diversity and inclusion. This certificate program helps participants develop cultural competencies, offering the tools necessary for linking diversity to organizational and work performance, and connecting the University’s Vincentian mission of dignity and respect for all individuals to our core operating business principles. This program may be completed within 18 months, and offers a full range of required and elective courses. Participants will have the opportunity to complete a “capstone” practicum project as part of the certification.

“The first available workshop to count towards certificate completion is Disability Etiquette, Awareness and Understanding which will be held on Tuesday, February 12, 2013. The training uses lecture, discussion and cases, to guide participants through disability etiquette & awareness issues from a social justice perspective. Examples of appropriate actions, language, etc. will be reviewed on a disability specific basis.”

I am concerned about the word “etiquette.” Education that averts discrimination on the basis of disability is great. Education that merely makes it more polite is not.

I attended a meeting this week (yes, we finally did have a meeting) at which one of the attendees said that when his students make certain mistakes he describes them as “retarded.”

I immediately said, “I think you should sign up for next week’s seminar on the Etiquette of Disability.” I sometimes wish that the tongue was not as nimble as the mind. As quickly as I said it I was thinking to myself, “Great. Things are just getting back to ‘normal’ and I have gone and used the ‘D-word’ in a meeting with a supervisor present.” But, honestly, what kind of wordsmith uses that word? I even considered referring to it here as the “R-word” because I find it offensive due to a dozen disrespectful uses of it that come to mind whenever I hear it. I decided to spell it out because it was critical to making my point.

His reaction surprised me. He said, “I can’t think of a better word for that behavior.”

The man obviously knew nothing of my situation. There was zero sensitivity to the plight of one who has been found to be disabled and sidelined for it.

It reminded me of a time in my career when I attended a lunch meeting of an organization to which I belonged. During the lunch, one of the members talked about a legal issue involving people who claimed that a facially impartial employment practice had the practical effect of depriving senior employees of credit for service that they needed to qualify for certain pension benefits. She said that a member of her team had described the potential claimants as “pension n******.” I do not use the “N-word” because it is impolite but, more importantly, because it is one of those words that reverberates with hatred and disrespect. No matter how you intend it, the word’s many nasty connotations travel with it.

The room got pretty quiet–even more so when the speaker realized that the audience was shocked. To this day I think she, like my coworker who used the “R-word,” just did not understand how words can hurt. I do not excuse either of these people. I just allow that they may not have intended the offense they caused.

Back at the meeting in which an attorney used the “N-word,” the entire incident became so much worse when a senior member of the organization said, “Thank goodness we don’t have anyone of color in the room.”

I looked up into the eyes of the African American colleague seated across from me and shared the moment when we realized what the speaker did not. There was person of color in the room. And what had already been an awful incident had somehow become worse because someone we respected was treating this like an off-the-record moment. We were about to go on as if nothing serious had happened. What goes on behind closed doors is, after all, what is most pernicious. If I know who my enemies are because they toss their fighting words in my face, then I can arm myself, can’t I? When they cloak ignorance and disrespect in polite words or conceal their motives, well, I have to box a shadow and it is tough to wound shadows. Even if you turn light on shadows they disappear, don’t they?

On another occasion in my career I sat at a board room table with a bunch of men old enough to be my dad or grandpa. I was going to work on a lobbying project for their industry. I sat beside a senior attorney who was serving as my mentor at the time. During the meeting one of the attendees drew the symbol for Batman but with the bottom of each wing depicted as a breast. Beneath the image, he wrote “BATGIRL.”

The men at the table passed it first to their right so that it came closer to me. It came close enough that I managed to see it. I was in my thirties at that time–old enough to school my expression and betray no reaction. Eventually someone realized that I might see it and the paper began to travel to the left. All the way around the table there were various reactions of humor, but, even when there was no visible reaction, the men passed the paper. When it reached the man who sat beside me, he alone shook his head “no” and looked sternly at the man who had passed it to him. Then he turned it over and went on speaking.

He never looked to me for approval. He did not raise the subject after the meeting and ask me if I had taken any offense. He did not apologize for our colleagues or his gender. I appreciated the way he handled it because, at that table, he, like me, was a service provider. He had to think about his relationship with our client as he chose his reaction. But he used some of his “intellectual capital” with the client that day to do the right thing in the situation. He trained by example.

In the many years since that meeting I have taken certain stands that have cost me. There also have been some times when I took another approach and let the moment pass. On some of the occasions when I have spoken up I have suffered consequences, including consequences that affected my income and my stature in the workplace. On some of the occasions when I have been silent I have felt far worse than after having been singled out for a reprimand for refusing to go along with the “flow.”  If I could get back certain moments in my life it would not be to relive my youth or take a different shot at first love or choose a less travelled road. If I could get back certain moments of my life it would be to redeem myself by expressing myself more forcefully. I wish that I always had the guts to protest injustice done in my presence.

Anyway, when my colleague this week defended his own use of the R-word, all I said was, “Maybe you should sign up for that class in Disability Etiquette.”

Everyone who offends does not intend to do so. All of us face situations in which we struggle for the best way to express a reaction to another’s offensive language. A few lessons in etiquette will not necessarily coach others to take their ignorance behind closed doors. It may coach them to choose words more carefully so that people used to being slighted can live without having to deal with the unintended indignities they now encounter.

What would really help though would be classes that educate about the reasons why healthy and successful businesses succeed by stamping out discrimination in their public and private communications. I am hoping that DePaul’s new seminar and staff certificate program will do that, rather than merely make people more polite in public settings. It is as important to wrestle with bias behind closed doors as it is to do so in public.

Serving Time

The clock moves at the same speed every moment of every day, but the hours can pass so slowly when you long to be some other place. Today I met with Dr. H and heard that my blood tests showed no abnormalities. My platelets should be between 169 and about 380. They were 196. That’s fine.

On Friday I will meet Dr. Y for my first gynecological examination in a year. Nothing terrifies me more. The last time a doctor examined me I screamed in agony. I assume that a great deal more healing has taken place since surgery and twenty-five days of radiation. Nevertheless, even as I sit at my desk typing this entry, my shoulders are tense. My hands feel cold. There is that tiny quake inside my body that could become a tremor and maybe a shake if I let myself feel it. Instead, I am clenching my teeth. I am curling my fingers into my palms to keep my hands from shaking. It will probably turn out fine. Women go through this every day.

Maybe that’s why it is making me so nervous. It is supposed to be easy. Nothing has been easy for some time. I may have powered through it, but it was not easy.

According to Dr. H, if Dr. Y is satisfied, then I do not need to return for another appointment until August. I like the sound of that.

She and Dr. Z examined my “rash.” It has not gone away. In fact, it has spread. They studied the blood results, but could only speculate as to why the patches have faded, but the expanse covered has widened. Dr. H called for a dermatology consult. The Dermatology Clinic agreed to fit me in today at 12:30 p.m.

I had already been at the hospital since 6:00 a.m., but I agreed to wait around until 12:30.

That’s right. I was huddled in my car this morning in the parking garage at 6:00. The 34 degree winds were gusting up to 50 miles per hour. I was reluctant to go inside and wait in a long line for the elevators to open. I hunched down in my seat and waited until 7:00 a.m. By that time the public parking lot was filled and people were halting beside my car to ask if I was leaving because they wanted my space.

When I got to the elevator bank the line of people waiting for an elevator wound all the way to the front doors of the building and back around in a huge horseshoe shape. I stood behind a senior citizen in his wheelchair. He had his medical file resting on his knees.

Only one of the three elevators at the east side of the building was in service. The elevator would open and the police would direct people into it. Someone would press B when everyone else was headed to the second floor specialty clinics. Everyone would ride downstairs. The pack would part resentfully to let the “deviant” depart. Then folks rode back to the first floor. The waiting crowd would surge forward and then be forced to halt because there was no room in the elevator. The doors would close and the elevator would proceed to the second floor. On its return, it would head for the basement so we could repeat the exercise.

A woman in her seventies cut into the line beside me and started to pass me. She looked fit and capable of waiting. I could have objected, but I did not have the energy to squabble when we were likely to end up in the same elevator anyway. She then made a move to pass the man in the wheelchair. Big mistake. Don’t ever make the mistake of thinking that the disabled are incapable. They just have less of some abilities and more of different abilities. The man in the wheelchair saw her out of the corner of his eye and he turned the wheels of his chair just a bit faster. He avoided riding up on the heels of the couple in front of him, but he made it impossible for the woman to cut in front of him unless she hitched a ride in his lap. She lengthened her stride and drew up alongside him and did the racer’s lean. You know what I mean. Her chin came forward. Her shoulders followed. She tucked her medical file under one arm and thrust her handbag forward.

Her intention was clear. If the next elevator appeared crowded, she would edge out the man in the wheelchair and leave him to wait for the next empty car.

I may not have felt like starting a “rumble,” but the man in the wheelchair had no reservations. As we waited for the next empty elevator, he pointed at the woman and said, “This is a line, lady, and you can’t cut into it.”

“Lady” is such a polite term, but not when it is used as the man in the wheelchair used it. There was a wealth of sneering anger in that one word. I felt it like a punch in the gut. The man in the chair might have been at the county hospital for his care, but his khaki pants had a crisp pleat down the front of each leg. His plaid shirt had starch in the collar and cuffs. He may have been in a wheelchair, but his shoes had the super thick soles you see when men walk a beat or stand in formation. The file in his lap was Army green and had papers that were organized rather than assembled. He spoke with authority, but, as I said at the outset, there was something else. It was darker and a little menacing.

I looked at the woman. She was equally determined to succeed. There is an inscrutable manner that some recent immigrants project. It is partly language differences. They may or may not speak English. They may or may not understand our cultural norms. This woman looked like she was pretending not to understand. She made no eye contact. Her eyes were on the prize.

As the elevator doors started to slide open she made her move. She darted forward, cutting past the wheelchair and the couple ahead of us. As she reached the elevator’s threshold a police officer crossed in front of her.

“Are you cutting in line?” The police officer was very tall. His uniform was very blue. His eyes were very dark, like the night when the moon is a tiny sliver in the sky.

The woman betrayed no emotion. None. She evinced the steely determination that will likely see her through whatever health threat she must now overcome.

The policeman looked at me. “Did this woman cut in line?”

Now everyone looked at me. The man in the wheelchair was right. She was cutting. But, I swear, he was giving me the same scathing sneer of distaste that he had directed a moment earlier at the other woman.

I shrugged. “Officer, I’m not sure when she joined this line.”

The man beside me was fuming, but both of us waited as she forged past the policeman. There was room for the wheelchair but no room for me. As the door shut in my face, the woman smiled. It was not a pleasant smile. I know. She thought I was weak. The man in the wheelchair was pissed off. He thought I was a bitch. Maybe I was a little more of one than the other.

I am betting that he was the first one out of the elevator on the second floor. If he could have, then he probably ran over the woman’s foot. I was better off waiting for the next elevator.

When I got to Clinic H there were other bad portents. It was 7:30. That’s right. It took 30 minutes to wait for and ride an elevator down one level and up two. I took a seat because my appointment was not until 9:15 a.m., and it is bad form to try to check in more than an hour in advance. The receptionist summoned me to her desk then told me I was checking in too early. I went back to my seat and graded papers for my drafting class at the law school.

When the nurse came out to test my vital statistics she could not manage to get my blood pressure. We tried three different cuffs, put it on two different parts of my arm, and let the machine take readings at least a dozen times. We finally tried another machine. By that time my blood pressure was slightly elevated.

That was a long way of telling why I ended up with time to try to renew my charity status at the hospital. I returned to Room 1290. That’s where I went on October 26th when I was told that I could not apply for renewal of my charity status unless I owed the hospital money. At that time I had one day left of eligibility so owed the hospital nothing.

I discovered that Room 1290 is now County Care’s office. County Care is part of the Obama Care plan. It is health insurance for people who cannot afford health insurance. Of course, you also have to have an income less than $15,000. There is a tremendous tax hit as you cross over from poverty to low income. Why would a person making less than $15,000 work even one more hour if the first thing she lost was health insurance?

I work way too hard to qualify for County Care even on what universities pay to adjunct professors. The receptionist sent me to CareLink in Room 1690. I waited in line with about 20 people to get a number that entitled me to wait to see someone. When I last had an appointment with these folks I was told I would not need an appointment to renew my coverage. Everything has changed since then.

I got number 317 when the number being served was 298. I watched the clock. It was only 10:30 a.m. I had two hours before the dermatology appointment. At noon CareLink was serving number 307. I left for my dermatology appointment. I thought there was a good chance I could return before 317. No such luck.

In the Dermatology Clinic there was a full house waiting. I sat behind a man, who was sleeping in his chair, and his transgendered sister. She was at least six feet tall, had a full head of orange hair that matched her orange fake nails, wore a push-up bra and three additional pieces of lacy lingerie layered one over the other, and sported a noticeable Adam’s apple. I envied her amazingly long legs that went up to the sky in leopard print leggings. I am pretty sure that she studied the various exercises of the Brazilian Butt Lift because you had to see it to believe how high her buns of steel were. She was still working on her voice. It was tough. It was Kathleen Turner after the Super Bowl and a sip of whiskey.

There was a man with a hospital mask and a plastic “cowl” that covered him from his neck to just above his glasses. It was more than a little reminiscent of those collars they put on dogs to keep them from biting their own wounds. This man showed up every place I did today. Apparently he let the door to Clinic G shut in the woman’s face and then said to her, “Get your own door, lady.”

The woman was incensed. “Who are you calling, ‘lady’?” she asked. “Are you talking to me, dog breath? Because let me tell you that I have a bigger set than you do and mine were cut off three years ago.”

This exchange woke the brother. He sat up and watched for a minute. Then he pulled his cap down lower and let his head sink inside the collar of his pea coat.

The woman was not done yet. “In these shoes I could raise my leg and still piss on your head, you shrub.”

The man looked dazed. He scurried away. The woman sashayed back to her seat and announced to no one in particular, “If he wants to treat me like I’m a man, then I’m still twice the man he’ll ever be.”

I saw five dermatologists today. Actually, one person was a med student. She introduced herself and shook my hand. Then she took my patient history very competently. We studied my rash and she informed me that it covered my sides and back now. I had not noticed.

She brought Dr. G. Dr. G brought in two more doctors. They studied my legs where the pattern of red dots was extensive. Dots ran from my ankles to the tops of my legs. The doctors took out a magnifying glass and all took a gander at the red spots up close and under bright light. “Just like cayenne pepper,” one doctor declared. They got on the computer and looked at my blood test results. “It looks like a reaction to the bladder medicine except that such an allergy would have stopped at your legs and flanks.” Everyone studied the profusion of red dots on my arms. They were unlike any of the other swashes of red dots because they collected in patches. There was a pattern like a petaled flower at the inside bend of my left arm. On my right arm it looked more like bruising. They poked and remarked upon the lack of swelling, “heads,” and other awful signs of allergy.

They left to get “the boss.” Dr. S came in and everyone studied me yet again.

It is a teaching hospital. I became a class problem. The doctor thought it ironic that he had only seen a condition like mine in other teachers.

He speculated that I may have an allergic reaction to my bladder medication. However, he thinks it could be hypergammaglobulinemia. Discovered by Waldenstrom–who also discovered macroglobulinemia. One should be careful to NEVER confuse the two. The former is an immunoproliferative disorder. Basically, it is possible that I have too much gamma globulin because I have too little of another type of immunity (antibody) in my blood. The one type of immunity is a paraprotein that is in excessive supply–IgM. It could be that I am too low in another immunity–IgA, IgE, or IgG. I guess these other immunities are sometimes referred to as B cells, T cells, and Natural killers (NK). The doctors would need a paraprotein count, and the test is expensive so will not be done at County. However, he described it as a nuisance condition. The spots will stay or go and may return throughout my life. He suggested that I give it another month to disappear. If it lingers, then I should return to the walk-in clinic after 3 p.m. on one of the several days of the week that the clinic is open.

He did not even want to make a note to my file of the possible condition because it has not been confirmed and because the other condition that Waldenstrom identified is a blood cancer, a leukemia. It is a very serious disease, and he said that practitioners will hear Waldenstrom and the rest will sound like the teacher in a Charlie Brown cartoon, “Wah, wah, wah, wah.” They will never appreciate how much less dire my condition is.

I agreed that I could deal with the nuisance.

It was too late for me to renew my charitable status. By the time I made it back to Room 1690 it was 2:30 p.m. and the staff was working with number 327. I was 10 people too late and will have to start over on another day. Maybe I can stay after my gynecological exam on Friday to pursue the charity status.

As I drove home after 8.5 hours of waiting for about 30 minutes of time with doctors I was struck by the similarity between this potential explanation of my current spotted look and my encounters with people waiting for elevators, care, or charity. They just have less of some abilities and more of different abilities. The man in the wheelchair could not walk, but he was steely in ways that keep him from getting run over. The woman in the Dermatology clinic may not have had enough anatomy to qualify any longer as a man, but she had balls of steel when confronted by a man who thought to put her down. I am not poor. I have plenty of education. I work very hard. But I have a history of cancer and not enough income to pay for health insurance. I don’t have enough of some essential immunity, but I have so much of another that it’s splashing all over my body in its outrageous excessiveness.

Sometimes we come up short and find balance by having way too much of something else.  Today the thing I really had too much of was time, so I spent as much of it as I could learning very little of any use to me.

Rerun

I have another appointment with Dr. H on Monday. She has arranged for me to see a gynecologist (Dr. Y) on Friday as well. That means that I have two more “opportunities” coming up to face my fears that cancer will return. I want to be doing the right things so I will go to the hospital and talk with both doctors, but a part of me feels about as excited as a kid going to the dentist for a root canal.

I still have petechiae. It has faded ever so slightly on my legs. However, my shins are covered with tiny red dots. It’s like freckles on steroids. It’s like sunburn, but patchy.

I dealt with medical creditor matters this week. A collector called my mom’s house and got her all stirred up. The medical services were provided at the hospital that diagnosed my cancer and performed my hysterectomy. I called the collections firm. We have spoken before and I four times mailed to it the information about my having been granted charitable coverage at the hospital. However, when I called this week, the woman who took my call claimed to have no record of my communications. I faxed to the collections firm the charity’s letter and more copies of my previous letters and sent everything by certified mail, too. Today I received a letter and the collections firm informed me that the bill had been withdrawn from collections and my credit report would be updated. Score one for me. However, this was one more reminder that cancer lurks out there making every aspect of my life more challenging.

I have submitted several requests for prices on health insurance since the fall. So far no company has sent me a quote.

I had the closest thing to a vacation that I have had in some time this week. I was down to teaching two classes. None of them were night classes. I looked forward to this break. I had plans to get things done. I wanted to organize my home. I hoped to toss some old papers. I longed to get out and visit with some old friends. I had a novel I hoped to read. I have not read a book for pleasure in months.

I did not get any of these things done. I graded papers. I received more than a dozen requests for assistance with students’ job searches. I managed others’ crisis situations.

I took my mom to the grocery store last Saturday right after I taught a five and a half hour class. My mom has had a baker’s cyst drained and has had swollen joints that have kept her indoors for days. She was dying to get out of the house. So I took her to the store and she wandered up and down the aisles trying to find some food that would help to reduce the boredom she has experienced sitting at home nearly every day since Christmas. She walked up and down the frozen food aisle at least three times very slowly.

A fortune teller once told me I would meet my second husband in the frozen food aisle. I haven’t been there in almost twenty years. You can live quite well on food items from the other aisles. Mom and I walked the frozen food aisle again and again until she found a pail of hot beef with its own juices. I scooted back to aisle two to get a pack of rolls and then over to the pharmacy for something to help clear her ears. Each time I came back she was standing in front of a glass case studying a bag or a box or a pail of something frozen. I could not wait to get her and her groceries back in the car.

On Sunday my landlady’s radiator pan split and the water soaked through her floor and my ceiling. I became aware of it when I thought I heard rain bouncing off a window air conditioner. I got out of bed and went out to the living room to check. It was supposed to snow, not rain. As I approached the front windows I saw the brown fluid seeping out of the crown moldings and a seam in the ceiling. I had to find receptacles to catch it to keep it from running down the curtains and into my rug.

Later in the week my mom called to tell me that she thought she had lost her checkbook at the grocery store. I needed to search my car for it in case it had fallen from her purse after our trip to the store. It turned up (thanks to a prayer to St. Anthony) in her home.

I experienced some comic relief when DePaul University solicted me for a contribution to a student scholarship fund. I am taking home about $100/week for teaching an upper level legal writing class at the law school this semester. The school doesn’t offer me health insurance even though I sometimes teach several classes per semester. It does not pay for my phone, Internet connection, or parking in the Loop. The law school terminated me for having cancer. It has been conducting its own investigation of this act since the fall and has yet to report any findings to me. The solicitation implied that students were more in need than I was and the chair of the scholarship fund drive promised to match any gift I made up to $52, which is such an incentive to give, isn’t it? If the law school means to punish me for having the nerve to survive cancer and assert my legal rights, then it has not judged my character (or my legal acumen) accurately. I will not go away quietly. I will hang on and fight for the right to be treated with dignity and respect.

I met with students this week, quite a few students. I heard from several friends. There was a great deal of angst in their worlds, too. Flu, stomach ailments, migraines, parents’ illnesses, family disagreements, a friend’s marriage was in trouble, financial pressures, fear, anxiety, stress, and pain. One friend’s family survived Hurricane Sandy only to have a fire in their home. Now a “hundred years'” snowstorm heads for their damaged home.

Each afternoon I climbed into my bed when I should have been making headway with my various projects. I just ran out of steam. I would lie in the dark and shiver with a combination of cold and nerves. I would wonder how much more stress I could handle. But I got up an hour later and went back to work. There is only so much time that I can bury my head in my quilt and pray for better times. The business of surviving means getting up and getting back to work.

Tonight I went out for dinner and a movie with Barb because I wanted to do something that smacked of a leisure activity. We saw the new movie Side-Effects. Barb screamed once and laughed uncomfortably a couple of times. I won’t spoil any of the plot surprises, but it was all about pharmaceuticals that promise to make you happy and leave your life in ruins. When I got home tonight I noticed that the petechiae has spread down the insides of my arms. All I could think of is that my post-cancer life is all about the side-effects. There are side-effects of having had cancer–fear and anxiety. There are side-effects of radiation to deal with–a burned bladder, the petechiae, and concern that it is not going away. There are side-effects of having been so sick without health insurance to cover my bills–creditors, collection calls, and charity applications to make and renew. The side-effects affect my life in every one of its aspects. This month I am feeling the effects of the lower stipend I receive now that DePaul no longer uses me to teach LARC III, a class I taught every semester until after I objected to being terminated for having cancer. Despite these side-effects, I am resolved to keep going.

I do not believe that my experience is unique. I think many cancer survivors find themselves in “loops” in which they start to feel better. Then they find themselves preparing for their next medical check-up like they were headed back into danger. Positive attitudes and a great support group can help, but sometimes the strength it takes to face fear makes me so tense that my teeth chatter and every muscle in my body clenches and shivers until I have cramps in my legs, pain in my back and neck, an ache throughout my jaw, and a massive headache. But I get up and do what I have to do because I want to live and life always means handling the good and the bad.

It’s not courage that keeps me going. It’s hope. No matter how dark some of these days have been, they cannot rob me of my hope that better days are ahead.

 

Ironic-ing

Just an update on the week’s events: I drove to the hospital on Friday to start the process of refilling the prescription for my bladder medication. I needed to switch from the generic drug that has covered me in red splotches to the name drug. I took the latter for almost a year without any allergic reaction to it.

When I made it to the hospital the public parking lot was filled and the building was closed to additional cars. This is Stroger Hospital in Chicago–our immense, “new” county hospital. There’s no street parking in the area. The public can use only two floors of the structure. The rest is reserved for staff. There is a large, half empty parking lot right next to the multi-level structure that was closed. It stood more than half empty, but accepts no patients or visitors.

This is what happens when I do not get up at 5:30 a.m. to be there before the building opens at 7:00 a.m.

I could drive six blocks away and park in the Juvenile Justice Building’s far larger parking facility for a shuttle bus. But it was 9 degrees outside and the wind was blowing hard enough to have blown a window in my home open that morning.

I turned around and took my prescription to a Walgreen’s store. It was a risky decision. Some of the drugs that have been prescribed, including a previous bladder medication, cost $400/month. At the hospital I would pay a much lower price. I already had gone without the medication for five days and anticipated having to wait at least five days for the prescription to be filled. My principal side effect from five weeks of abdominal radiation is radiation cystitis. It is painful and causes incontinence. This drug that has brought relief and red splotches galore is the thing that gets me through my darkest days. It quells the spasms that can be very painful.

It was comical. No one at the Lincolnwood, Illinois drug store’s prescription counter greeted me for five minutes. I stood there, feeling like the clinic at the county hospital might have served me better. At the hospital I take a number and wait. At the drug store I was invisible. Eventually a pharmacist took the prescription and asked me to return in fifteen minutes. He said “fifteen minutes” like my waiting time might prove to be fifteen months. I took a seat and waited. Fifteen minutes seems like a short wait compared with three and five and seven hour waits at the hospital–except that, when I am at the hospital, I always know someone will serve me.

I went back to the counter after twenty minutes and waited. It took twelve more minutes for someone to help me. In that time no one acknowledged me. Others working in the pharmacy saw me and walked by. I was not the only person to receive such treatment. Another woman attempted to drop off her prescription. When no one came to assist her she left.

In time, the lone clerk operating the drive-through window finished handling a steady stream of customers. She assisted me. I walked away with a huge bag that contained my small bottle of pills (which turned out to look nothing like the two versions of the drug that I have taken previously).

So, this is one week when there was a win, loss, and a draw. My platelets turned out to be fine. They were not committing suicide, just collecting unattractively to signal dissatisfaction with my medicine. My quarterly check-up turned out to be a bust. The doctors and I never even had a moment in our fifteen minutes together to address my health concerns (I will get to see them again in another ten days or so). I faced inconvenience and frustration all week as I tried to fill a prescription for a drug that would address my principal side-effect of cancer treatment and put a stop to the spread of red splotches from my ankles to my hairline. The drug store only charged me $10 for my medicine. I was feeling like the rude service was an acceptable consequence of having been unable to even get into the hospital’s parking lot.

As I headed out of the drug store I stopped at the front register for about $15 of groceries. The woman who had walked away from the prescription counter without being served was there complaining. The cashier was determined to get the customer to wait to speak with the manager, but the customer left. I echoed her concerns and did stay to speak with the manager. He just apologized. It was not all that satisfying.

When I got home I realized that I had paid for my items, but the cashier (who seemed more intent on having me complain to her boss than I was) had never put my bag up on the counter. I had walked away without my few groceries. I never noticed because I already carried a big Walgreens bag. this means I “paid” $25.30 for the retail prescription I could have gotten for $5 if I had been less impatient and returned to the hospital again or taken a shuttle. Of course, it was not $400, like the drug I last bought retail, but it was five times as costly as if I had shown even more patience.

There’s a lesson here. I am certain of it. But–for the moment–I cannot figure out what it is.

 

Passing the Platelets

So the latest word is that I am covered in red splotches because of the generic drug I started taking last month and not because my platelets are committing suicide. That is a relief.

I now need to go back to the hospital to submit a prescription that I hope will be filled with the name brand version of the drug.

It is an interesting thing–this brand vs. generic issue. I get the feeling it is like Coca Cola and some can that just says “cola.” The two are not the same. Of course, in the cola situation they will look alike. It is difficult to mess up “caramel color.” My medicines look different. One is bright blue. The other is white with faint blue specks. I checked the online pill identifier to make sure both were intended to address my radiation cystitis. This was not a case of pharmacist error. If you get something other than a Coke you may recognize the substitution by flavor. I happen to prefer Diet Pepsi, but have nothing against Diet Coke. I recently ordered the latter in a very pretentious restaurant. It was the kind of place where the waiter took longer to describe the seared tuna than it took to eat the four quarter-sized disks of raw fish with transparently thin slices of miniscule radishes and jalapeno peppers that set my palate afire. The Diet Coke tasted flat and watered down–but it most likely was the “real thing.”

How strange to think that a generic version of a drug could cause my rash. It has infiltrated my hairline, but I still don’t see it on my face as Dr. H did on Monday. Some areas have so many points of red that I look burned. I bought a tube of Desitin yesterday and coated the worst splotches because they were starting to get “weepy.” It may be a good thing that it is 6 degrees outside. I have been layered until most of me is hidden from view.

Diane, a dear friend, inquired whether it was the dye in the medication that brought on this allergy. I don’t know the answer to that question. I used my online M.D. (worth every penny I never paid for it) and learned that 3% of people taking my drug have petechiae. I actually am troubled less by these splotches all over me than I am by a smudge I found on my blouse yesterday. I studied it for signs of its origin for awhile yesterday before treating the mark to (I hope) avoid a stain. But I walked around with petechiae for more than a week without much reaction.

We have expressions for being insensitive to the appearance of our own skin, don’t we? Some things are only “skin deep.” No one wants to be so sensitive as to be “thin-skinned.”

I was much more concerned at the prospect of suicidal platelets. Nevertheless, now that the whole “scare” is fading and the splotches are not, I will confess that I am exhausted by the whole affair. My head aches from all the stress of even going to see the doctor, much less starting to worry that radiation cystitis could turn out to be the least of my problems.

I tend not to “catastrophize.” When I get bad news I try to tamp down panic and “chill-ax.” I hope that things will resolve themselves, given enough time. But just for today I think I will crawl into bed, pull up my quilt, cover my head, and imagine that when I wake up in a couple of hours I will look and feel brand new.

Then I’ll climb in the car and drive to the hospital and submit my prescription for processing. Having passed the platelets test I just want to catch my breath before I go back to the place where, for a week, I caught something a little scary, even though it turned out to be painless.

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