Not Down Or Out

It could be worse. I might not be laughing.

Month: May, 2012

A Cast of Characters

I spent five and a half hours picking up my prescriptions today. That includes the drive to and from the hospital. Why did I think it was best to leave yesterday when I faced a three hour wait for pick-up? I already had forgotten what it is like to be a charity patient at a county hospital.

I set my alarm for 5:30 a.m. because the early bird gets a parking space. It took me twenty minutes to get dressed, brush my teeth, dump my trash in the cans in the alley, and hop in the car. The drive was not bad. I might have made better time if I had hit the expressway, but I was not sure what the NATO departures might be doing to the expressways so I took Lawrence to Western to Grand to Damen to the hospital. I encountered a fair amount of traffic for the early hour. There was a woman with a grocery cart that had gotten stuck in a pothole. I waited for her to pass. There was a car cutting in and out of traffic that prompted me to hang back so as not to get in his way–even though we ended up at the same stop lights for a mile or two. Then there was a commotion when a police car pulled over a woman who was talking on her cell phone (who kept on talking on that cell phone while the officer wrote the ticket). All the rest of us waited because she had not so much pulled over to the curb as stopped in the middle of the right lane. The officer stood in our lane. A truck was parked in the median strip.

I managed to get the second from the last space as measured from the hospital’s entrance. It was not yet seven in the morning, so I hunched down in the driver’s seat and waited for things to get going. The pharmacy is on the first floor so the elevators were not involved in this visit. Nevertheless, I knew from experience that there would be no place to sit and wait until the elevators opened and people dispersed. At seven I walked to the hospital’s door with the incoming shift’s employees. People were uniformly polite and pleasant. A military-looking man in a warrior’s t-shirt and dun-colored painter’s pants held the door for me. I thanked him and he answered, “No problem, baby.” I was old enough to be his grandma. I just smiled and kept on walking. I already suspected that this would be my most pleasant encounter of the day.

The pharmacy door said it would not open until 8:00 a.m. I should have checked yesterday, but everything else opens at 7:00 a.m. There was a line in the hallway for Clinic A. I moved on to the main entrance’s waiting area. This is where I used to sit to wait for the elevators to open when I had arrived early enough to get a number for radiation treatment. There were many people waiting there already, but I got a seat. The chairs are covered in the finest vinyl. The armrests are made of sturdy rubber. Nevertheless, they appear to have been set upon by a horde of tigers. Several chair backs show long scratches. In some cases, the stuffing has been clawed out. Many of the armrests have been gnawed upon with fingernails? Keys? Teeth? There is one armrest that has been amputated and now is bandaged in silver duct tape.

I have never observed anyone inflicting such damage so cannot explain it. Everyone waiting looked tired, hungry, and quiet. One young man slept with his forehead resting in his left palm on his knees. He had two grocery bags of stuff beneath his seat. One elderly woman slept in a corner. Only her hair suggested that she might be in the throes of something cataclysmic. Her navy sweat suit was clean and not very rumpled. Her white athletic shoes were clean. But her hair was inky black, curly, and standing straight out to one side like she was catching the back draft of an airplane engine. No wind blew inside the waiting area.

There were the couples. There was a man, a woman, and a baby. The baby was sick. The man was walking the waiting area soothing his baby. The woman went to the ladies room. She left her open handbag on the empty seat. No one bothered it.

There was a couple from India. The man wore his hair in a turban, perhaps because he was a Sikh, although I saw no evidence that he had rolled and tied his beard inside that turban. His wife appeared to be the one who was sick, but she was attentive to him. She had a bag filled with individual grocery bags. In each plastic bag there was a treat. She took out a banana and peeled it. She ate half. He ate the other half. They paused. Then she took out an orange. She peeled it without breaking the peel. They shared the segments.

A woman entered looking like she was starting a Friday night date. Her hair was thick and wildly curled. She wore a black bra, most of which was visible beneath a gold sweater with a ruffled neckline and sleeves. It fell off of both shoulders and hung suspended from the fullness of her breasts. She wore ivory gauze harem pants and open-toed espadrilles that revealed toenails painted the color of an eggplant. She had on immense gold bracelets, a beautiful watch and great big earrings, also gold. She wore sunglasses. Eventually she moved them atop her head and put on a pair of rhinestone trimmed reader’s glasses. She studied her smart phone, carefully typing messages with impossibly long fingernails, also painted. She looked to be in her sixties.

An elderly woman hunched over her walker tried to exit the ladies room while its automatic closer tried to trap her on the threshold. She signaled to her son to come help her. He was a tall man with skin the same lush color of the other woman’s nails. He wore black jeans, a black hoodie, and an exquisite black leather bomber jacket. He spoke as though this were a club on Saturday night. His loud voice prevented anyone from concentrating on her own concerns. He was boring a couple with his life story. When they finally excused themselves and left he tried to engage someone else in his concerns, but was unsuccessful. He never did get up to help his mom. Later they would walk the street in front of the hospital sharing a cigarette. She still had to push her walker, but he held the cigarette to her lips.

At 7:30 a.m. two police men came to roust the sleepers. The young man with his head in his hands was sent packing to the Fantus Clinic. The elderly woman with the petrified locks turned out to be mentally confused and a little weepy, but she shuffled off.

A woman with tangerine hair joined us. When I say tangerine I mean it. This is not a hue found in nature unless one is a citrus fruit. The hair was painfully thin and stiff. It might have frozen in its shape after catching sight of its own reflection. She wore a pink bed jacket of the softest polyester over a pink housedress. Her hose and athletic shoes were pristinely white. She was someone’s well loved granny, but the granddaughter was putting on a show. Think of the character Mercedes on TV’s Glee. This young woman was squeezed into a brown leotard and designer jeans. She had her smart phone out and was saying to the person on the phone, “That’s right. I said it. You need to be ready to hustle when I get back there because, Arabella, tick tock time’s a wastin’.” Then she spoiled the entire effect by helping her granny into a chair and buttoning the woman’s bed jacket up to her chin.

A woman without many teeth took the seat beside me even though there were plenty of seats with no one else beside them. She wore a black jacket covered in felt appliques of cabs. She had a backpack from which she drew pistachios and Fritos (the breakfast of champions) one at a time.  I knew she was toothless because she gummed each morsel for an interminable amount of time, her bottom lip nearly touching her nose every time she ground down. This made quite a bit of slurpy noise.

I got up and headed for the pharmacy. There are three pharmacies in the complex. Mine was close to the garage entrance. Clinic B-C was the pharmacy for inpatient and ER patients’ use. Then there was a pharmacy in the Fantus Clinic across the street. When I arrived at the pharmacy’s door someone had just opened it to the public. It was ten minutes until opening. People already stood in a line. Someone was making an announcement about who should stay and who should go elsewhere. Most of the people waiting spoke Spanish and ignored these instructions, which were not repeated for them in their language.

We went in and took numbers then took seats. I was H507. A man came in after me and pulled H510. He seemed strung out on drugs and in a hurry to get more. He bent at the waist and called through the passthrough opening to the employees congregating in the back of the room. “Hey, I’ve been up like twenty-one hours and want to get my stuff. Help me!” No one answered. He tilted his head sideways and stuck it through the opening, then tried to turn it upright, but the opening was tight.

A man got up and moved closer to me. He said, “Does picking up a prescription always mean a floor show?”

“Somedays better than others,” I commented.

Two policemen yelled from the hallway, “Whose bags are these?”

The agitated patient sobered up and yelled, “Sorry! Mine.” He ran out into the hallway, collected his two plastic grocery bags, and tossed them under the nearest empty chair. Then he started pacing and, by pacing, I mean like this was a rapper’s performance. There were big arm motions and abrupt starts and stops. He moved his head like there was musical accompaniment. He waved his pink, yellow, and white prescription records and a torn scrap of lined paper on which he had written notes: “God is great. God is good. Get me my drugs while I’m in a good mood.”

A clerk came forward to explain that the pharmacy would open in a few minutes. The patient kicked his grocery bags in my direction. I could see that one held a ratty seafoam green blanket and numerous used wads of facial tissue.

The sickest woman in the room came to sit next to me and proceeded to cough up something vile. She got up, crossed to the trash can, and spit it out. Then she came back to sit beside me. I turned my back to her and used my manila folder with my charity certificate and prescription records to tap my temple. It was the best I could do to block the germs she was emitting.

A woman opened window two and started the service announcements at H500. No one responded until H506. No other windows were open. But, just as was done yesterday, people formed lines regardless of whether they had been called. When it was my turn I approached. The woman told me I had to pay at window 4. But no one had opened that window. So I went back to waiting.

At 8:05 a.m. a man opened window 4. A line had formed for that window. Some people were in the wrong place.  I finally paid my $8. But now window 2 was on H517. So I hung around near window 2.  What was the point of opening window 2 before window 4? I have no idea. But at 8:15 a.m. the clerk at window 4 hung a sign that he would be back in 10 minutes. He left.

I eventually handed my paid receipt to the clerk at window 2. She told me to have a seat and wait.

Meanwhile the patient on drugs had learned that nothing happens fast at the pharmacy. He started asking people to trade numbers even though his number had already been called.

He was the only African American patient in the room when another African American man came in and decided to ask him a question. He launched into a discussion about how long it had been since he had slept. “Sir,” I tried to interrupt to offer the new patient some help because the man on drugs looked like he was going to start acting up again. The new patient needed a refill. I directed him to the Fantus Clinic. He shook his head. “Isn’t this a pharmacy?”

“Only in theory,” the Hispanic man on my left said.

A man tall enough to play in the NBA entered the room. He wore a powder blue suit and carried his own plastic grocery bag. He approached window 4 and yelled, “Where he at?”

The patient on drugs said, “He gone in the back.”

That was not true. The clerk from window 4 had gone for coffee down the hall. The tall man eventually walked out. He returned with the clerk. The clerk explained he was coming from a meeting. He held up his coffee cup like this confirmed his alibi. He went back behind the counter and started taking money again. The man in the blue suit left.

The woman at window 2 finally called my name. I went up and signed for my medications. By the time I got back to my car it was well after 9:00 a.m. Someone followed me to my car in his and honked at me when I was not fast enough to exit my parking space. “I have not got all day,” he yelled at me in a surprisingly cheery voice.

It took more than an hour to get home in morning traffic. I stopped at the McDonald’s to use the bathroom. I took my meds and decided it had gone well.

Later this morning I described my experience to a friend who commented, “Maybe if we didn’t coddle these people they would take better care of themselves.” That was not the message I had hoped to convey. This is what life is like for people who cannot afford to buy medical insurance. There is no such thing as an appointment. You hurry up and wait all day if need be. You don’t get to sit with a doctor who has time to listen to your every complaint. You have fifteen minutes. You don’t drop off and pick up prescriptions at a drive-thru window. You sit right alongside the the sick, the uneducated, the hopeless, the unwashed, the exhausted, the homeless, the poor. You wait your turn. You wait even when it does not make sense. And you are grateful for the help. Maybe you are also embarrassed to need it. If it takes five and a half hours, then you wait. Because this isn’t a gravy train. It’s county medical care. It’s a safety net. And, whether or not you have been raised to think this is what life is supposed to be about, this is life now. You are grateful to be caught in the net.

I don’t play a patient on TV. The cast of characters that surrounds me doesn’t either. This is all so real, all so sad. Nevertheless, it is saving my life. I am one of the characters who is glad to have a speaking part in the dramedy that is unfolding.

Another Bullet Dodged

So far so good in the battle against cancer.

I tried to arrive after the elevators are unlocked at 7 a.m., but the police forgot to be at the elevators at 7:00 a.m. Patients were still in line at 7:15 a.m. By the time the police unlocked the elevators patients were impatient. Although I waited near the end of the line, it took some time for me to make it up to the second floor. People who arrived later than I shoved for places in the elevators, in some cases unaware of the fact that there was a line. When it was my turn to enter, one person gave me her elbow in my side as she shoved past me. I tried to take it in stride, but there was a moment when I could not help thinking she looked spry enough to take the stairs. Once she was inside the elevator she learned that the elevators at that end of the building only go to the second floor, first floor, and basement. She huffed over this until the man to my right took out his handkerchief and pressed it over his nose and mouth. When the huffy puffy woman stared at him, he said, through folds of cotton, “What did you have for breakfast, woman? Dog food?” I stared straight ahead and did not smile as I exited the elevator and headed for Clinic H.

I saw Dr. H again today. She ordered a new scan of my abdomen to look for cancerous growths. I will also have some blood tests prior to my next appointment. We spent most of my appointment discussing my bladder and my blood pressure.

She prescribed an alternative to Vesicare as I tried that drug back in January without having any response to it. She phoned the urology department to discuss this course of action and took the department’s recommendation that we continue to address this with meds rather than the hyperbaric chamber. Despite the endorsement of the hyperbaric chamber by the American Cancer Society, there is some reservation that has yet to be articulated. I inquired whether or not the fact that oxygenation of blood might also spur growth of cancer cells when it spurs replacement of damaged bladder cells. Dr. H just nodded, then tilted her head and smiled. It was not so much an answer as an acknowledgement that I was asking a valid question. She already had commented on the fact that I was reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee, M.D. (Scribner 2010). It may be wise to learn as much about one’s enemy as one can. However, this history of cancer is more frightening than the trailers on TV for the new movie Chernobyl Diaries. In the illustrations there is a drawing of the medieval “physician’s” approach to breast cancer. Acids, burns, and leather bindings–conducted without painkillers. Id. at 300. In much later periods, surgery was performed in “theaters” in which women were strapped down for painful, disfiguring, crippling, and, ultimately, fatal surgeries that sought to make breast surgery more and more “radical.” Id. at 62-66. The doctors operated in this manner for some time before they observed that survival related more to the stage of cancer than the “radical” nature of the surgery. Id. at 66-69. The idea of carving past the chest and deeply into the neck, sometimes removing the clavicle, regardless of the cancer’s “staging,” reminds me of the cliche “throwing out the baby with the bath water.”

This is a field that tested early chemotherapy and its precursors, with somewhat greater success, on children with cancer. Id. at 92. The fact that it seemingly was “women and children first” is ironic, but, according to the National Cancer Institute, 2010 federal spending on breast cancer research was the top draw for funding. http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding. That seems fair when you consider how many women participated in early experiments in cancer treatment. However, even these numbers indicate that we could do much better. Uterine cancer, the kind of cancer I had, is the fourth most common type of cancer among women. Its share of the budget is relatively quite small. Moreover, within the broad field of breast cancer research, research of metastasized breast cancer draws less than 1% of the National Cancer Institute’s research budget. http://www.nfcr.org/index.php/metastatic-breast-cancer-research. This means that we spend minimally to address the most lethal of these breast-related cancers. Metastasized cancer is what we fear most. My mother’s sister suffers from such a cancer. If you want to read more about this or want to direct your cancer donations to this critical area of breast cancer research, check the blog of Yvonne, a fellow cancer survivor. http://timetoconsiderthelilies.wordpress.com/2012/03/23/make-metastatic-breast-cancer-matter/.

No one suggested that I continue treatment by undergoing internal radiation therapy. Dr. H read aloud from her notes Dr. T’s statement that further radiation could cause the loss of my bladder. So I will try another anti-spasmodic drug and hope that it will help my bladder heal from five weeks of external radiation. Dr. H also prescribed a water pill to help me hold down my blood pressure. She thought it was pretty good today–146/71.

It took almost one hour to drop off my prescriptions. You have to take a number and wait to drop off a prescription. The room is half-filled with people waiting. When they call a number, they do so in English and Spanish: “Number G081 please go to window 7. Numero G081 por favor ven a ventana 7.”

When I was called, I waited while the clerk paged my doctor to inform her that the bladder med was not available in extended release form. Then I had to talk to the doctor to hear how to adjust dosing. Then I went back to window 7. It takes three hours to fill my two prescriptions. I could not wait until after 2 p.m. so will have to return on another day. When I need a refill I will need to pick that up at another building’s pharmacy. That pharmacy has a waiting room large enough to fill a commercial airline. I have sat there for hours waiting to be called for a blood or urine test. The alternative is to take my prescriptions to the pharmacy at Walgreens. I did that when the urologist prescribed Vesicare and a month’s supply cost me over $400. I can make the time to return tomorrow to pick up my prescriptions.

My hour’s wait to turn in my prescriptions gave me ample time to study my surroundings. There were five windows open. Two took prescriptions, two gave them out, and one took money. There is a $4 per prescription fee even if the county’s charitable program covers the service. The woman taking money seemed bored. She came out from behind the wall of glass windows and nosed about. She stopped one woman and asked, “You here to fill a prescription?” The patient nodded, spoke unintelligibly, then handed over her prescription. The clerk looked at it, then returned it. The patient tried to communicate, without a word of English, her desire for some help. The clerk pointed toward empty seats and said, “Wait til someone calls you.”

Signs instructed us to take seats until called to a window, but there also was a line. Some people waited in the line and tried to approach windows as they became open. They were shooed away. Some people left after taking numbers so there were periods when a number was called, no one came, someone from the line tried to approach, the clerks shooed such folks away, and another number would be called. Sometimes it took the announcement system longer to call a number in English and Spanish than it did for the clerk to process the prescription. Numbers appeared over windows and on a board like an airline’s arrivals and departures board, sometimes out of time with the oral announcements. Some patients were sick and tired. One woman stood at the counter saying the same thing over and over for several long minutes, “No, I didn’t get no pills here already. No, I didn’t get no pills here already.” After repeating this enough times for all of us to get the message, she shook her head and said, “Oh, yes, I do remember being told to pick up refills at the Fantus Clinic.” She wandered out in the wrong direction if she meant to next go to the Fantus Clinic.

At one point, the clerk who had joined us in the waiting room tried to collect cash from a patient for his prescription. He kept trying to say in Spanish that he would pay the clerk when she returned to window 4. The clerk kept saying to pay her. He acted like this was a shakedown or a request for a bribe. People lined up behind him, thinking this was a good place to ask questions. As others got up close to him, the patient got nervous. He took out his $4 and placed it on the counter like he was paying under protest. Then the clerk took out a stamp and stamp pad and marked his receipt paid and gave him his receipt. He shrugged, finally seeming to understand the system.

The clerk ignored the five people behind him and turned back toward the office’s door. She disappeared inside and eventually returned to window #4. The line dissipated when the clerk disappeared. A man sat next to me, even though there were many empty seats. “This is how things work here in Cook County,” he whispered from behind his hand. Then he laughed at his own humor. He pulled four chocolate bars from his pocket and asked me if I wanted to buy one. “This stuff is better than what’s in the machines downstairs,” he said. I shook my head to decline. He repeated his pitch. “Better than medicine,” he promised. He eventually approached someone else.

As I walked out to my car, I felt pretty good about the whole experience. On the one hand, I had been thinking this was going to be an appointment when I actually got tested for the recurrence of cancer. Nothing like that happened. I was thinking that if I had health insurance I might have been examined. Don’t they have an equivalent to the Pap smear for women without cervixes? I haven’t been examined much at all since Dr. D removed my staples five days after surgery. I have had one internal examination since then, given when my bladder was congested with blood clots. It was horrific. I still remember being unable to hold back a scream as the ER doctor opened the speculum. I don’t think you could call that an examination. I immediately started bleeding and the whole thing ended swiftly with an apology for the necessity of “checking.” Dr. H once looked at my scar and pronounced it healed.

I did not have blood work today. No needles whatsoever. My next blood test will take place in July right before my CT exam. The blood test order doesn’t even call for a test of cancer markers.

I’d like the peace of mind that would come from some test results, but I felt like a college student who is delighted to get out of class early even if she’ll be paying the school loans down for thirty years in the future. I dodged a bullet today. I’ll worry about it tomorrow.

Scars That Heal, Wounds That Won’t

I have scars that heal and wounds that won’t.

Tomorrow I go back to the hospital for a check-up. It has been about two months since I last saw my doctors. In that time I have experienced some healing. I have been able to introduce some new foods into my diet. I can eat many vegetables that do not contain seeds. A pickle that has been cooked is soft enough. I have gone to salad bars with Barb and tried small servings of artichokes, beans, bean sprouts, beets, broccoli, carrots, cauliflower, corn, lettuce, mushrooms, onions, peas, radishes, red cabbage, sauerkraut, scallions, snow peas, spinach, squash, sweet potatoes, and even zucchini without mishap. Most fruits are fine in moderation. Fresh tomatoes remain a challenge for me. Strawberries and raspberries are not my friends. I look longingly at celery, but tried it once recently with painful results. Imagine trying to pass a roll of floss. Of course, nuts are still a hazard. Eating them is like trying to pass glass.

When I last saw the doctors I rarely ate meat. It was tough to digest. My intestines had been burnt by radiation, which meant that they ran slowly and often experienced distress. Now I can eat most meats but rarely have any desire for anything spicy.

My radiation burns have healed. The red marks remain around my hips and thighs, but are starting to fade. Several of them were mildly infected at one point in my recovery. The scars look like rosy lightning bolts.

My fingernails no longer peel like the skin of an onion. But there is a line somewhere around the midpoint of each that shows some trauma. On same nails it is a deep ridge that I can feel with my fingertip. On some nails it is a line of tiny white dots, almost like bubbles fizzing to the top of a glass of club soda. On one nail the dots are raised and faintly yellowed, as if stained by a citrus fruit. I attribute these scars to chemotherapy–although no one else has mentioned this phenomenon in the books I have read. For several months my nails seemed flattened at the top, but now they curve. Country Joe, one of my cancer buddies, told me that his nails had gone completely flat–a sign of lung cancer. Soon my nails’ scars will grow out and be clipped away.

My hair continues to fill in. I can barely see my scalp when I view the back of my head. I still keep my hair quite short so that it escapes the wear and tear of styling. It is darker than it was before. There is more silver there. It has some wave to it. It annoys my mom that I cannot stop touching it. She says, “You never lost all of it so why the need to reassure yourself it is still there?” I have no answer. It remains fine and thin, soft to the touch like a baby’s hair. I have eyebrows and eyelashes. The lashes started longer than they had ever been before, but I noticed last week that the long ones were falling out and had been replaced by what appear to be shorter lashes. My eyebrows are darker than they used to be. I have very few white hairs there.

There are miniscule white hairs on my forearms. I cannot feel them, but I see them in the right light. There are one or two tiny hairs beneath my arms and the faintest dusting of hairs down there, too. I have so far shaved about five hairs off of my legs.

My knees still hurt. I still take Osteo Bi-Flex once a day. It has helped. But I used to climb stairs well. Now it depends on the weather. Most days I take the stairs one at a time and rely on the handrail to steady me. I used to move swiftly down the streets of the city with my briefcase on wheels keeping up. I am slower since cancer. I have not been out of breath, but cautious. I no longer presume the legs will carry on as usual. It is as if we are coming to the expiration of a collective bargaining agreement and the laborers in this enterprise may slow down so as not to be taken for granted.

I still have a brown patch of skin on the inside of my left forearm where a particularly nasty port was installed for intravenous delivery of some medicine. In the center of that persistent “bruise” there is a red spot where the needle tapped blood. But the radiation tattoos on my hips are gone. I have been marked nearly indelibly by needles stained with medicine rather than by those that bore ink.

My tongue has changed. For several months there were faintly yellow marks along its sides, almost like thin chicken’s tendons. They are gone. My tongue has some fissures in it. I see them when I stick my tongue out and arch it. It looks much better than it did five months ago.

I think my blood pressure has risen. I have mentioned before my rising impatience with other drivers. When I heard my boss had described me as “insane” or “crazy,” it felt like a thermometer shot up with a spiking fever. I have noticed that I feel tension the way I did back when I worked in D.C. It makes my head hurt. I feel tightening along the temples. There is a feeling of hesitation that falls just short of physical disorientation when I move suddenly. I find myself taking off my “reader’s” glasses and closing my eyes. I try deep breathing until the sensation of squeezing that sometimes creeps over me creeps away. I went to a Walgreens store for a free blood pressure check last week but waited so long for the P.A. to return from his or her break that I grew angry enough to leave before confirming that there was a problem. I tried one of those self-serve machines, but the cuff did not fit properly. It failed to read me twice, then gave a very high reading–the likes of which I have not seen since the day I learned I had cancer.

If my blood pressure has risen, it is not a change in diet. If anything, I eat healthier now than I did two months ago. My weight has changed by only three pounds. I have used salt once in weeks. I eat more fish than I have in years.

I no longer am overwhelmed by the smell of my own body. For months I swore I smelled something burnt and entirely unwelcome that emanated from every pore. Now I pick up that smell on rare occasions. I attribute this in part to how much water I drink every day. When I am not at work I guzzle water all day long.

My bladder is still ailing. So far I have had eight hours straight without pain. It was one blessed night. Many days I can manage a three hour block of time without having to go to the bathroom. This happens when I am at work and do not consume fluids. It is a relief not to live in constant fear of a loss of bladder control in a public place. I still lose that control when at home or out and about. I don’t mean a small loss of control like actress Kirstie Alley mentions in her new Poise pad TV ad. I mean complete helplessness. It comes in a frustrating cascade of panic that adds to my weekly pile of laundry.

The pain is still keen, like I have forced hot vinegar through burning flesh. Sometimes, when I have control, I flinch at the first shock of it. Other times the pain gets lost in the emotional reaction I have to having no control. There are days when it hurts even though I am not trying to urinate. The pain is sharp, but unsustained. Have you ever seen a pirate movie in which the pirate has someone hold his prisoner’s hand flat on a table, fingers splayed, while the pirate uses his cutlass to stab at the table? As long as the blade hits wood, the victim is fine, but who can keep stabbing at the table without taking a bite from flesh? It feels like that sometimes. There is an unexpected slash of pain followed by a respite of indeterminate length. Then the pain is back and sometimes so sharp that I catch myself wanting to cry out.

I don’t cry though. I have grown accustomed to this pain. I wince. I flinch. I catch my breath. I freeze for an agonizing moment. Sometimes I sigh as the pain dissipates. But I have the command over my emotions that I did not have in December and January. Back then tears ran down my cheeks and I cried freely, sometimes for long periods of time during which I prayed frantically for relief. The pain is no longer that fierce gnawing at my nerve endings that signals clots are trying to pass. There is no sensation of congestion in my lower abdomen. Back in December, when things were at their worst, I felt puffed up, not at all like bloating. It was like someone filled me with helium until the balloon that was me might pop. There was tautness but also lightness, like the part of this body that is me had to shrink to the point of fracture and dispersion to make room for all the blood I was going to have to expel. I have not seen blood in a long time. I am so grateful for the healing that has taken place that I sometimes forget when the pain I still experience felt so awful that I could not bear it.

I know nothing much for sure any longer, but I don’t feel like I have cancer. Even as I write those words I feel compression in my chest. I don’t want the doctors to find cancer when they test me this week. Donna Summers died a couple of days ago “after a long battle with cancer.” My nose runs at the idea of a battle with cancer that goes on for a decade. This week the NATO summit is being held in Chicago. If people would come here from great distances to protest nations’ decade-long wars to hold onto ravaged foreign lands that we may never be able to hold or rehabilitate, then what must it be like to fight a battle in which the enemy is as tough to find, engage, and defeat as a terrorist cell but the war takes place on our own soil? If my bladder was only the first of many casualties of the war on cancer, then how many skirmishes could I survive? I will handle what I must, but I will acknowledge the valor of soldiers everywhere, including those who fight the enemy inside. It takes courage to go see the doctor tomorrow. It diverts energy from the process of going on living to rehabilitate what has already been burnt, poisoned, or mowed down in the last bout with the enemy. In times of economic woe, it would be nice to think I could abandon my post on the cancer frontier and go back to just making a living. But a war begun is difficult to abandon. The enemy has a way of turning retreat into defeat. And what seems like foreign land is often perilously close to what we hold most dear. So to all of those soldiers engaged in battle against cancer, disease, despotism, hatred, and violence, I honor your sacrifices. And those of you who fight these battles so that others might live free of fear, I salute your courage. And for those of you who fall in the battle, you will be remembered. Your losses will be counted.

What Passes for Normal?

Yesterday I hunted in my purse for a comb and realized I did not have one.

It has now been a little over four months since I finished chemotherapy and a couple of months since I lost my hair. My hair no longer stands up on top like Woody the Woodpecker’s. There is a cowlick on the left side of my head where the hair sticks out a little. It never did that in the past. I was in the restroom at school and tried to smooth it with wet fingers and thought, gee, maybe I could move my part higher and use the extra hair to hold it down. I emptied my purse’s contents on the counter before I realized that the comb had disappeared when my lack of hair became noticeable. The comb never made it back to my purse afterward.

I hunted in the rolling briefcase that is an adjunct professor’s mobile office and found no comb. But I did find four plastic spoons–concessions to the changes in my diet. I now eat applesauce at least once a day. I often carry a container of yogurt when I leave home in the morning. I never had a spoon with me before cancer. I started putting spoons there after I “sanitized” the ruler I use to measure margins on students’ papers so I could use it as a spoon when I had yogurt and nothing to eat it with. The metallic tang of that makeshift spoon brought me closer to throwing up than chemotherapy ever did, but I was worn to a nub and needed to eat even if I did not like what I ate.

I walked out to my car and hunted through it for a comb. I did not find one. But I did have an extra set of clothes that I had placed there when I had not yet figured out how to handle my burnt bladder and worried that I might need a change of clothes while at school. I brought those pants inside my home last night and moved them to the “charity” bag. I have lost enough weight that they are too big.

Underneath the driver’s seat there was a notebook in which I had jotted stray concerns to discuss with my doctor back when I saw her every month. In it I had written, “When can I expect to feel normal again?” The answer written there was “three weeks after the end of treatment.” It has been many more than three weeks and I am not feeling “normal.”

This week I learned that the supervisor who “reassigned my students to other classes” as soon as I was diagnosed with cancer had described me to a tenured member of the faculty as “insane” or “crazy” for demanding that the University do something to correct this discriminatory behavior. If the account I received is correct, that professor did not share the part of the story that reflected poorly on her. The professor who heard I was insane asked another colleague if I was crazy. She answered, “only if being terminated for having cancer can make you crazy.” He had not been told that I had been terminated for having cancer when I was described as crazy.

Maybe you cannot go back to the way things were before cancer–ever.

I spent time last night thinking about what is normal for me and for others in my position. Is it normal to turn the TV off when you hear Peggy talk about the doctor at Cancer Centers of America who said he examined her and never found anything on her that said she had an expiration date? That commercial makes me angry and impatient and sad all at the same time. It makes me angry because it makes me remember when I thought my cancer had reached stage three and I read that I had only a 45% chance of being alive in five years and later learned that my cancer was only stage one and my chances of being here in five years were at least double 45%. It makes me impatient because when I watch Peggy struggle to control her tears I resent the blatant manipulation of her fear (and mine) by a commercial concern looking to find patients and make money. It makes me sad because I know that I can be manipulated if someone offers me a remedy that might protect me from ever feeling again as Peggy does.

Is it normal to go to bed at night at age fifty-five and say to yourself, “Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take” because you can no longer articulate prayers for things that might not come true? Is it living in the moment if you think you could die in a very short time if your next medical test has an unusual result? I have not given a single thought to my retirement years since I heard that my cancer might already be stage three. I receive bulletins and mail from AARP, but I no longer look at them. I have not given up hope that I will live a long life, not at all. But I have come to think that I have more important short-term goals to meet first. I sit and ponder the human condition. I call a family member or a friend to talk about our days. I answer a student’s need for reassurance with my complete attention and try to end the conversation by saying, “you’re going to make it,” as if they also feel that sense of time eclipsing opportunity. I think of getting a pet to keep me company when I am alone with my fears because I have seen how pets and their owners are both made brave by company as they answer the door to face a stranger. I think about committing myself to the activities of life rather than its financial security because security has become more, not less, related to having activity than having its price.

Is it normal to look at your own reflection in a mirror and appraise your parts like options on a used car? Have you ever thought of your bladder as you would a sunroof that seemed like a great feature for drives on a sunny day and now feels like a future source of leaks on a rainy one? I keep thinking that I have done a poor job of choosing what options were going to be important to me. I remember my cancer buddy Joe saying, “had I known I would live this long I would have taken better care of my body.” I remember my response to the question, do you ever look at your body and wonder why it has let you down? My answer was, “No, but sometimes I find it hard to meet the eyes of my own reflection because I feel like I let her down.” The truth is that I have felt my mortality at many times in my life. But now I feel as if I have made her acquaintance. And I find myself wondering, as one sometimes does when a neighbor has begun to drop by unexpectedly every day or always inopportunely, is there any gentle way to deflect these visits?

When did cancer become my buddy? I remember meeting the cancer patients who became my buddies as we went through treatment, but somehow the cancer that was removed October 7, 2011 has found a way to tag along for every day since that operation. If it has been excised, why doesn’t it go away?

I will be brutally honest about something I seldom hear people admit. There are days at a time when I don’t think about my deceased dad or the child I miscarried many years ago. But I think about cancer every day. Oh sure, those other losses happened twenty to thirty years ago and cancer “happened” only seven months ago. I anticipate that time will help heal me. But I sometimes let a day here or there pass after those two grievous losses when they were fresh experiences. I felt guilty about that forgetfulness back then. How could I forget someone so well loved, so lovingly conceived? I would feel delighted now to go a day without thinking about cancer. Yet its specter is there like a shadow on the sunniest of days.

Maybe “normal” is the wrong standard by which to measure how I am doing. Maybe normal has always been a standard in flux. Maybe the reason that I can forget those other losses is that I take them “for granted.” I usually use the term “taken for granted” when talking about someone who no longer concerns himself or herself with my concerns or vice versa. Sometimes that occurs because of the ease in our relationship that permits us to be inattentive and sometimes because our relationship is not much of a relationship at all. If “normal” is always a rupturing event away from being redefined, then it isn’t so much a relationship as it is a diagnostic tool that helps me relate to myself in a constantly changing world. I am always normal but normal means something different all the time. When little is happening then normal becomes comfortable, even when it is not. And precisely because of that easiness, once normal changes I will feel disturbed.

If that is normal, then to think every day of cancer after being diagnosed with it is normal. It is as normal as not thinking of cancer was when I did not know it was growing inside of me. Perhaps I can find ease even if I think of it every day because it means I can gently ease it out of my awareness just by paying it no attention when it intrudes.

I still have not put a comb in my purse, but I feel a little better about the fact that cancer is still my companion. Our way of relating with each other, now normal, could be of short-term duration, something much less serious than a “relationship,” one day soon taken for granted in the sense that we will part without fanfare or forlorn separation.

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