Not Down Or Out

It could be worse. I might not be laughing.

Month: October, 2012

Thank you for your Service

This morning I woke at 4:30 a.m. to prepare for my third trip to Stroger Hospital this week. Every day this week has been stressful due to the huge time commitment associated with even one trip to the hospital. Last year I had to be there five days a week for five weeks for radiation appointments. I certainly was feeling better about the process today than I did back then.

At a few minutes before seven in the morning I parked in the hospital’s lot. There were more than a dozen open spaces in the last row of the second floor. I hunkered down in my seat to grade papers because my appointment was not for a couple of hours. The weather turned cold yesterday evening. Thursday afternoon we hit a record high of 79 degrees. I could see my breath when I exhaled in the morning.

I wore what I will always think of as my cancer sweater. It’s gray, coat length, and heavy enough to keep the cold at bay for the walk from the car to the hospital building. It is not heavy enough to become a dead weight as I walk around the hospital trying to get things done.

As I marked a student’s contract I kept stopping to draw a long blonde hair from the sweater’s loose guage. I wore this sweater when my chin-length bob was falling from my scalp to my shoulders and from there to the floor.

It has been through the washer several times since then. I predict that I will reencounter my long lost locks for as long as I keep that sweater around. I have no plans to discard it. It served as a blanket during six long chemo sessions. It shrouded me in silence during tedious waits for appointments. I rolled it up and used it as a pillow once or twice.

The people who arrived after the hospital opened whizzed around the parking lot over and over as they despaired of ever finding a parking space. I could see an empty space several rows closer to the door than my parking space. It was unavailable because a pick-up truck had encroached on it. One by one drivers tried to fit into the narrow opening. Each gave up and returned to circling.

I went inside when my fingers started to feel the cold. I walked down the hallway to Room 1690 and waited in the line to check in for my appointment. The waiting area was nearly empty. There were five people waiting and the number being served was 151 when I got in line. It was 154 when I made it to the receptionist.

She looked at my paperwork. “You need to go back down the hall to Room 1290,” she said. “Go to the coffee shop and make two lefts.”

She handed me a piece of paper with my name and the time: 8:49 a.m. My appointment was scheduled for 10 a.m. It never pays to be late. Numbers come and go. People not present when called are passed over.

I walked back the way I had come and found Room 1290 in the area near the elevators where I once waited for permission to ride upstairs for doctor’s appointments. I walked into a waiting room. One woman sat in the three rows of chairs. She pointed to a reception desk. “Start there,” she said.

This room was unlike the waiting room at Room 1690. At that end of the hallway there are about fifty chairs in an open waiting area. Then there are about as many chairs in a second, enclosed waiting area. Every seat is filled in that second, enclosed waiting area.

I approached the receptionist. “Do you have a slip?” he asked.

I handed him my piece of paper.

“Have a seat.”

I sat down and went back to grading.

After awhile someone came to collect me. She pointed to one of two hallways leading from the waiting area. “Take a seat in booth three.”

I walked down the hall and sat down in a carrel. She used the other hallway and met me on the other side of her desk.

I explained that I had an appointment to “renew” my charitable status at the hospital.

“Did you bring everything we need for that review?” she asked.

“Yes.” I took out my driver’s license, original determination letter, birth certificate, marriage certificate, divorce certificate, pay stubs, and a current utility bill.  She studied them and her computer screen.

“You will have to return in January with these papers and up-to-date pay stubs and a current utility bill.”

I know I raised my eyebrows, but I was careful not to challenge. This is not the type of place that welcomes challenges.

“You don’t owe the hospital anything right now,” she explained. “You need to have your status reviewed when you receive uncovered service. I see your next appointment is in January. Come back then. You won’t need an appointment. You’ve been through that rigamarole aleady.”

She continued to study my papers. “I’m going to make copies of some of these documents so we won’t have to do that when you come back,” she said. “Wait here.”

Off she went.

I found myself recalling a time in my life when I could get irate about having to wait thirty minutes to see a doctor. Back when I charged $275/hour for my legal advice I sometimes wondered aloud with whom people thought they were dealing by dragging me away from my office, keeping me waiting, wasting my time. Those days are gone. I sincerely thanked the woman for her time, took my papers, and headed back out to my car.

This is what it means to be uninsured and diagnosed with cancer in America. You are grateful for the safety net and do not complain all that much about the difficulties. I am well aware that these inconveniences are minor when waiting means I can receive the care I need to live. The inconveniences hit me with much less pain than they do some others. I worry about the working poor with two jobs and no time off during the week. What about the people with young children? People sometimes wait on bus stops or on train platforms. They switch buses and trains. They walk long distances. They drag behind them their children or an aging relative. Sometimes they do not speak English. They may have to deal with foreign locations to obtain birth certificates or may be undocumented.

I already voted this week. I am not a big fan of the President. But I voted for him because I cannot write off the 47% of Americans that sometimes need the social services my past and current income taxes (and yours) have helped to make available. The people who rely on Social Security, Medicare, Medicaid, charity, and other programs are not faceless or nameless or useless. I understand that some in our society do not want to work so hard for the aid of others. I do understand that feeling. But do not imagine that here in uninsured America we are enjoying the fruits of others’ labors without being grateful. Please do not tell yourself that it is easier to be poor than it is to work. Please do not resent the fact that others are unemployed or underemployed or unemployable. Please do not fear us more than you fear finding yourself in need of assistance. Please don’t abandon the social compact.

We are a nation. The social compact that binds us together means that some are called to military service to protect our liberties. In times of war they have given their lives to protect this way of life. No one of us has ever given enough in thanks for their sacrifice. Some give their limbs, the right to bear or give life to children, their mental stability, or the quality of the remaining years of their lives. Nothing they receive financially for this service compensates for their suffering. Some are government servants. They toil each day on behalf of the public, most days without thanks or fanfare. When their service is done we sometimes complain about their pensions. Some serve in private endeavors such as charities. Their generosity is often anonymous. Some work and pay taxes. Some build businesses. Some work in them. All of us contribute. Maybe it has been awhile since anyone said thank you to you for your share of the national sacrifice. If that is the case, then let me rectify the oversight. Thank you for your service. It is sincerely appreciated.

 

 

All That and a Flu Shot

Deja vu. I once again awoke at 4:30 in the morning. I showered and dressed and gathered up my materials for my 6-9 p.m. class out at the Naperville campus. I walked out the back door into a light rain. I got my car and headed for Stroger Hospital. I had not slept well, although I was nowhere near as nervous as I was on Monday when I attempted to see the doctor and still teach a 10 a.m. class. I managed to get a parking space on the second floor of the hospital’s parking garage. There were only three spaces left at that time. There is an immense empty parking lot next to the garage, but it is for staff. Staff still can park in the structure in which I parked. They don’t park in the uncovered lot.

I waited in my car until after 7:00 a.m. to avoid the lines for the elevators. My appointment was for 10:15 a.m. I graded papers in my car by the dim light of the streetlight near the parking lot structure. People kept circling in search of parking spaces until about 8:00 a.m. when a few people came out to collect their cars and go home. Then the patients and visitors resumed the endless circling as they searched for a place to park.

When I went inside the elevator lobby I encountered someone’s little granny wandering around in untied gym shoes. She was looking for Clinic H, which is where I was headed. So she came with me. I could be someone’s granny, but I’m not. But you know the kind of lady I mean to describe. She had white gym shoes. My brother Danny says the seniors all buy white gym shoes so the rest of us must wear black ones. He’s right. These were white and she had white support hose on under her navy, velour track suit. She had no hair and wore a headband with a jaunty crocheted flower on one side. It was the sort of thing new moms give their baby girls when they get tired of saying this is my little girl.

You cannot check in more than an hour before your appointment unless they want you to do so. I took a seat in the waiting area and went back to grading papers. There was an empty space next to me. A chatty woman of about my age came over and took it because, as she said, “I want sit with two ladies–no dirty men!” The woman who sat on her other side knew her. They compared notes on drains from mastectomies and A/C chemotherapy treatment side-effects.

I waved to a woman I recognized from treatment last year. She did not acknowledge me. After I checked in with the same receptionist who helped me on Monday, I stopped by to say hello. She told me, “I’m sorry. I don’t remember you. I am forgetful, see?” She tapped her head. “Chemo fog.” I have heard that some breast cancer survivors have this condition after repeated doses of chemotherapy. I was saddened by the thought that you could forget someone you had a nodding acquaintance with for five weeks, five days per week.

There was a young Indian or Pakistani woman in her twenties there with her father. He wore his cotton pajama bottoms complete with some stains on the back of them, his house slippers, a winter jacket, and a ski hat with a pom-pom on top. His daughter had to use her entire body as a counterweight to drag him to his feet when the receptionist demanded that he come answer questions. He probably weighed about 100 pounds. His daughter was shorter and more delicately built, but she was the master of her father’s care. She had a binder filled with notes and test results. Her father never spoke loudly enough for me to hear him, but her little voice rang out like a bird’s whenever his name was called. “Come, Daddy,” she would say in heavily accented English as she cajoled him one more time to his feet. She had a water bottle squeezed into the waistband of her jeans. Every once in a while you could hear her say, “Open wide, Daddy. It’s time for spritzing.” Then she would squeeze the water into his open mouth the way a mama bird feeds her young.

A woman my age accompanied her mother to the clinic. They were African Americans. The daughter groomed her mother the way a mama cat might. Several times she licked her fingers and smoothed her mama’s extensions’ curls. I am so careful not to touch my own face while I am there. It feels like germs surround me. It did not bother her. Several times as she touched those silky black curls a small chunk of hair detached from her mother’s scalp. She brushed them off her mother’s back. You could see that the patient’s hair was in speedy retreat due to chemotherapy treatment. The woman’s scalp was the creamy color of cafe au lait and unmarred by even a mole. When the receptionist wanted the patient to come to the counter, this daughter was stalwart. “No. My mother must conserve her strength,” she said loudly. The receptionist backed down.

My blood pressure was high by the time I made it back to the nurse’s station. 156/74. At least the machine worked on me this time. I went back out to the waiting room to wait my turn. There were no seats. I stood by a half wall and used it as a desk while I continued grading papers. The receptionist with the legal problem from Monday summoned me to her desk and thanked me for emailing her some ideas and information she could use to protest some cell phone overcharges. She had quite a bit to say on the subject, so much that I did not hear the doctor calling me. It was the resident who was just starting out when I first came to the hospital for treatment. Now she manages my case for Dr. H.

We talked about my hair. Everyone is amazed that it is now so dark, so wavy, and so short. We walked back to the examining room and she had me get on the examining table so she could look at my scar, palpate my stomach, press all my lymph nodes, and listen to my lungs and heart. We talked about my bladder, but not for long. “You look younger,” she announced. “Chemo is not good for much, but your hair is beautiful. The gray is like expensive highlights now. You shimmer.”

Then Dr. H came in.  She looked at me and smiled. “I have that blouse,” she announced. “Have you had a flu shot?” she asked.

I was a little surprised at the seriousness with which she asked the question. I was hoping to get a shot at some point. “No.”

“We’ll take care of that today. How is the bladder?”

I ended up leaving with no new approach to the problem. I had blood drawn and will have my urine analyzed. I will continue taking pills for urinary incontinence (they work). But Dr. H is reluctant to do more about the pain at this time. I asked if her husband was okay. He has cancer and also has radiation cystitis. She told me that her husband recently had a kidney stone. “He’s quite a complainer,” she commented. I was thinking that the only kidney stone that I ever had was more painful and a more sustained pain than my bladder pain. “We women suck it up,” she announced.

I got the message.

“We will see you again in January rather than in April,” she said. “And we’ll have a CT scan then. Maybe we’ll look in your bladder at that time. You need time to heal.”

She was gone.

I really did not expect much more than that. I just hoped we could come up with a new approach.

“Drink water,” the resident advised. “Lots of water.”

The nurse gave me my flu shot. She said, “You won’t feel this. I’m that good.” I felt it, but I agreed that she was a painless nurse. She was so supportive on Monday. The pains that really matter are not the shots. They are the pangs of fear I sometimes experience when I hear about cancers that return. They are the stinging jolts of fear that assail me when I think I might not get to see the doctor at all. They are the deep aches that come from memories of treatment and my Christmas 2011 hospitalization. I can handle flu shots.

I headed next to the Infusion Clinic, Clinic J. I saw Leonard, the phlebotomist, who said, “Hello, Cheryl.” He must see hundreds of people every week. But he remembered me. He is the master of the painless injection. He took my blood without any sting at all.

I had to wait for the bathroom so that I could collect a urine specimen. An overworked nurse wanted to hop in there for a second, and I urged her to go ahead of me, but she was called away before she could get inside. Those nurses never get a minute’s break to address their own needs. Cherry recognized me sitting in the hall after I let a chemo patient go ahead of me. I remembered well how bad it sometimes was when I was tethered to a beeping I.V. machine and my bladder or bowel was about to EXPLODE!

When I had turned in my urine sample I went over to say hello to Cherry and Diane, two of the nurses who handled my chemotherapy infusions. I felt so much better after ten months of recovery. They marveled over my hair. The same old signs that said renovations would soon lower wait time hung in this area. I could hear Access Hollywood blaring from the TV. There were people parked in all the chemotherapy chairs. They looked frail and exhausted and many carried plastic grocery bags with medicine bottles and Gatorade bottles. The pharmacist with the size-too-big heels clomped around the room. There were people with one foot in heaven and the other in hell. One woman with wispy, snowy white hair was asleep in her chair. Her chemo drug was shrouded in a dark wrapper as it cannot be exposed to light. She was so tiny and shiny. It was like I was looking at a doll. She is still fighting though. She and the dozens of people who were there today were looking for their best chance at winning the war against cancer.

As I waited for the elevator to take me back to the first floor I teared up with emotions I did not allow myself to release when I sat in one of those chairs. It is no less terrifying to recall these experiences than it was to have them, but the ten months that have passed have given me a new appreciation for the numbing sensation of shock that accompanied me every day for months after my diagnosis.

I once packed my little bags of crackers, applesauce, yogurt, and pudding. I nibbled my dry cheese sandwiches. I sipped that nasty bottle of Gatorade. I waded through disgusting bathrooms. I smothered my panic through allergic reactions to Taxol. I undressed in filthy rooms and shuffled into cement rooms and let strangers poke and prod my naked body and cook it with radiation. I waited endless hours in the midst of my suffering and the suffering of others.

I made it. Maybe cancer will find me again. Maybe it will be something else. All I know for sure is that I can endure. One minute, one hour, one day–as long as it takes. Until I want to give up. That won’t be any time soon.

I ended my trip to the hospital in the CareLink Program’s office. I made an appointment for Friday morning to apply for continued eligibility. My current year of charitable status expires Saturday. So much has happened in a year.

I started this journey without a map or a destination. Where I find myself today is a better place. I did not make it alone. I made it with the help of family, friends, cancer buddies, coworkers, students, surgeons, doctors, nurses, phlebotomists, radiologists, pharmacists, hospital staff, my naturapath, American Cancer Society volunteers, charitable organizations and their employees, receptionists, my hairdresser, the woman who gave me a pedicure, the guys at the parking lot who cleaned my car of snow when I was too weak to do another thing, strangers who prayed for me, new friends on the Internet who cheered me on–no matter how lonely this battle felt at times, I was never alone. I had my faith that God stood beside me. And I had so much good company. Today I am filled with grateful emotion because of all that. And I got a flu shot.

Much Ado About Something

There are days when it feels like you should go home, crawl into bed, and start over. On October 22 I tried to see my doctor for my “anniversary check-up.” It has been about a year since I first met Dr. H and her colleagues. I was stressed out because I learned in July that Dr. H only has office hours on Monday mornings. I teach Monday mornings at 10 a.m. at the law school that last year terminated me for having cancer. I did not expect to get any support if I needed to reschedule my class for another time. I am permitted to use one “class” for individual conferences. This would permit me to take a Monday off and schedule the conferences for later in the week. However, I used that option to attend my niece’s wedding earlier this month. It was held out of town and on a Sunday, which meant that I had to return on Monday. I cannot regret that decision. Maureen and her husband Justin came to take me to chemotherapy back in December. She is one of only three nieces and nephews in my family. I love her. So I made the right choice, but I was worried. I am a county hospital patient. I do not call the shots here. If I skip an appointment I take risks with my health that I do not like.

On Monday I got up at 4:30, dressed, assembled all my stuff, and headed out at six thirty. You have to be at the hospital early to get a parking space. I got one in the last row of visitor parking on the second floor. I waited in my car until after the elevators opened up because I had no desire to stand in the long line of people waiting to be herded into the elevators by the police once the elevators were unlocked for the public.

I checked in for Cinic I, which handles several kinds of cancer cases. I explained that I had an 8:15 a.m. appointment and needed to be out by 9:15 a.m. to teach my class. The receptionist listened empathetically to my reasons for fearing I might lose my job if I arrived late at class. “You’re the first appointment,” she said.

When the nurse came out to see me, I explained the situation. She promised to get me into an examination room as soon as she finished taking my vitals. She had some problems with my blood pressure. She tested me five or six times without getting a reading. We tried both arms and my forearms. I wondered if my blood pressure might have been high due to the tension I experienced, but agreed to let her test me again after my appointment.

I went to sit in the examining room. At about 9:15 a.m. I had to leave the hospital because the doctors had yet to arrive. Of course someone asked me to make a new appointment and I ended up speaking with the same clerk who originally told me that my doctor is only available on Mondays. This time she told me I could come on a Wednesday. I think she managed to pull the rug out from me.

I have been concerned about this since July when I made the appointment. I have lost sleep and explored every option short of asking the law school for an accommodation. While she entered the information, the receptionist asked me for some advice in handling a minor “legal issue.” It was one of those days.

I did not whine. I agreed to return on October 24th at 10:15 a.m. Then I scurried outside to look for a cab. There was not enough time to get my car, drive to school, park, and make it to class. It was raining. There were NO cabs. Not one. At a major hospital in an urban area. I had one bar on my cell phone and my battery was low. I made several calls to a cab company before someone came to pick me up. The cab company kept saying it needed a street address to come to the hospital. The corner of Ogden and Damen in front of the ER was not precise enough. Eventually, someone came. We raced across town. I ran into the building. I was on time. Hot, sweaty, wet from the rain, but on time.

After class I had to take a cab back to the hospital to retrieve my car. My cab driver claimed not to know where the hospital was. I had to give him directions. When he got off of the expressway he balked. The neighborhood was unsafe. He did not want to drive further. It was noon. It was raining. There were road crews working on Damen, near the hospital. You could see the hospital from where we were. The driver would go no further. So I got out and walked the three plus blocks in the rain.

My mom asked me later if I would be reporting the cab driver to the city. I won’t be. I was so frazzled that I failed to note his number. That is not like me. As my mom said later to her friend, “My daughter is a report-er. She reports anyone who does not do as they are told.” Okay, that cracked me up. My brother Danny used to call me Sister Mary Tattletales.

By the time I got to the hospital I was wet and crabby. I regretted leaving my umbrella in my car that morning. I felt like a deflated balloon. Who did I encounter as I walked through the building’s first floor toward the parking garage? The receptionist who originally told me I had to make it to a Monday morning appointment or not receive further treatment. She asked me why I was not at school–as if I had been insincere about my need to reschedule when I had to leave before seeing the doctor earlier that morning. I explained about having returned to get my car. A part of me was inclined to vent, but I let the moment pass.

I am a county hospital patient receiving charity assistance with my overwhelming medical expenses for treatment of cancer. I have more to be grateful for than anyone else I know. If having cancer and undergoing treatment has taught me anything, it has taught me that I cannot control anything that is really important. I can wheedle. I can yell. I can argue. I can whine. But I am only human (and so is everyone else). Sometimes you just need to go with the flow.

I guess I needed some reminding and the universe sent me a reminder. All the angst I experienced was for naught. I made it to class. And I will get to see my doctor tomorrow.

If I learned anything from the experience it was that I need to have faith that I can handle whatever is coming my way–good and bad.

So, when I drove back to school and the parking lot was filled, I drove my car around for an hour and returned to find a space had opened up. And I did not yell in my car or “catastrophize.”

If I am going to make a big deal about every obstacle in my path, then life is going to require . . . . I’m not sure what it will require. If I figure out what my life is missing, then I will be sure to blog about it.

 

Calling All Angels

Monday morning I will be seeing Dr. H for my check-up. I feel the tension like a twisted rubberband from one shoulder to the other. I have an 8:15 a.m. appointment and a 10 a.m. class at the law school. Nothing ever happens on time at the hospital. I will have to get there at about 6:30 a.m. to get a parking space. I will have to beg the receptionist and nurse to get me in and out on time. If the appointment is delayed, then I will have to leave when I run out of time, even if I have not been able to see the doctor.

My doctor only has office hours on Monday mornings. I teach on Monday mornings. I only need to make it to one doctor’s appointment this semester. It will be spring before my next appointment. I have asked to teach on Thursday mornings in the spring. I do not have “sick days” where I work. I was told in the spring when the law school offered me this class that I could not miss any classes. I think my supervisor said that because her boss has zero tolerance for my cancer. She fired me just for having it last fall, not even waiting to see how my surgery turned out.

I would have scheduled individual conferences with my students for this week to ensure there was no conflict between my doctor’s appointment and my class, but I already had to do that to attend my niece’s out of town wedding two weeks ago. I have put a family commitment ahead of my own good health. Now I will put my job before it.

Which explains why it is so difficult to take care of myself. I keep forgetting that I should put on my own oxygen mask before helping others put theirs on. But this feels a little like deciding whether to jerk the steering wheel to one side to avoid a tree or jerk it to the other side to avoid a deer. In each of the scenarios for this semester I have had to make choices to serve some objective of my own–good health, employment, or familial loyalty.

Of course, I may not have cancer any longer. My last scan and blood work showed no sign of its return. In that case, if I have to miss my appointment this Monday in order to make it to my class on time, then I will do so and will suffer no loss. I do not feel like I have cancer. I feel reasonably strong.

But my bladder continues to burn each time I urinate. I am not complaining about twinges or mild discomfort. This is knife sharp and red hot pain. This week it was particularly bad. I attribute that to stress. I think I sometimes have a “guarding” reaction, a flinch that is its own painful spasm. The prophesy of pain is thereby fulfilled. Today that pain was terrible. I had other pain, too. I kept pressing my fist into my stomach in an attempt to find the body part that hurt, but I was unsuccessful. There was pain beneath my sternum and below my navel and deep in my gut, but no tenderness. Its nonspecific ache makes me think it was nothing more than stress leaking out of my cells and pores like acid rain.

I think I should try the hyperbaric chamber to see if it can heal my bladder. I recently watched a video on youtube.com about this treatment for radiation cystitis and a doctor said that the oxygen would help bladder cells regenerate but would not feed cancer cells because cancer cannot grow in a highly oxygenated environment.

I guess my body is not all that well oxygenated as it has housed a cancer before. If I try the hyperbaric chamber it might be just the thing to empower me for whatever comes next.

In the last few weeks I kept running into stories in which cancer returns. This week I had lunch with Rodney. His mom is dealing with breast cancer for the third time. She has already had two mastectomies and has decided that she is too tired to fight now that her cancer has metastasized. I just saw Robin Roberts on TV. She is dealing with cancer for the second time. First it was her breast and now her blood. How many weeks ago did Andy Williams die? That was bladder cancer, wasn’t it? My aunt has not answered my last note of inquiry about her health. Her breast cancer has persisted for more about a decade.

I push these thoughts away every day with positive thoughts. I am cancer free. I am much stronger than I was when I finished treatment in December. I got at least part of my job back at the law school. I ended up qualifying for charitable assistance with my hospital bills at two hospitals. My family is doing well. All I am dealing with at this time is fear.

So I am calling on all of the angels who got me through the last year and asking them to help me through the next few days. You know who you are. You prayed for me when I went through my surgery. You held my hand during chemotherapy and radiation treatments. You called me with words of good cheer as I completed each challenge. You sent me cards when I was weak. You let me lean on you when I was tired. I need your positive vibes now. Just keep sending your love and support. If you send me your positive thoughts now, then I can handle whatever this week brings. When you lend me just a little of your strength I can handle anything.

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