Not Down Or Out

It could be worse. I might not be laughing.

Tag: Prognosis

Baby Steps

I continue to suffer the side-effects of the efforts I have made to prevent the return of cancer.

I cry in bathrooms. It still hurts to eliminate anything. I have no idea if this is a temporary or long-term problem. One woman asked me if I needed toilet paper. I hope I never cry for lack of toilet paper. I have tried to lighten the dismal mood that I am in when in a bathroom by crying, “AyAyAyAy.” Sort of a tribute to jalapeno peppers everywhere.

I can barely walk up the four steps to my apartment–particularly when weighed down with a cart of books and papers to grade. Tonight it took me about four minutes to make the climb. Sixty seconds is a long wait to climb one step.

I have trouble sleeping. If I sleep 46 minutes to one hour without waking, I am happy. I have a few times slept two hours in a row. How refreshing!

Foods taste differently to me. Today I ate a bratwurst. I had cooked two. One ended up in the trash. Diet Dr. Pepper used to be an occasional treat–no more. It tastes terrible to me.

I don’t smell the same to me. My sweat smells differently than it did in the past. Other sources of body odors also have changed. I personally find the new odors distasteful.

After surgery I was numb around my incision. Before chemotherapy and radiation, sesnsation had returned. Now it is gone on my left side and restored only on the right side. I feel as if there is a gaping tear there–not painful, just disconnected.

My hair is neither here nor there. Some remains on my head. The rest is on my clothes, my pillow, my comb, the floor, caught in my necklace, and sometimes snagged on my lip. I fear it will all fall out before it grows in anywhere. I have eyelashes and eyebrows (update: by February 8th, they also were becoming scarce). There are two hairs on one calf. I have a few white hairs that have grown on my chin. The rest is gone.

My nose still bleeds every day.

My skin is so dry that I have calluses on my knuckles and the joints of my fingers. There are patches of very dry skin all over my ankles.

My gums bleed if I brush hard or floss.

I feel as if I am a much older person than I was two months ago.

Inside I am positive. I enjoy many things in life as much as I ever did. I believe I have beat cancer. I remain passionate about teaching and about writing and about people and about so many things that have always made me happy. Nevertheless, I sense that I will be viewed by some as damaged. That saddens me.

On the day I started chemotherapy and radiation I brought two fortune cookies to the session. Barb took one. Mine, which hangs over my desk reads: “You will pass a difficult test that will make you happier. Lucky # 10, 17, 25, 29, 32, 37.” I pray that the fortune is correct. For now, I take baby steps. I pray that I will pass this test and, indeed, be happier.

Home Away From Home

On January 15th Kathy and I drove to my home for the first time since I left to visit my mom on December 22nd.

I am a person who values her “things.” Paul has tried unsuccessfully to introduce me to the principles of feng shui. I have nearly every book I ever bought. I have every journal I kept since childhood. I still have notes I passed with a friend from seventh grade. I have the first romance novel I wrote in high school. I collect things: pink and green glass, blue and white porcelain, pens, and other items.

It’s been a month since I checked on my things. We have never been apart so long. My first thought was that I should have taken out the trash. I retrieved mail and dumped it into a bag to take it with me. I changed my clothes, which had suffered the agonies of my bladder’s injuries. I needed to find something to wear. I pulled a pair of pants from a bag of clothes I intended to contribute to charity. Those pants are an inexplicable collapse of good taste. They are black with a white design on them. The only thing that could make my behind look bigger than those pants make it look is if my behind grew larger. I did not realize that my behind had to shrink quite a bit for me to wear them. I just pulled them on. As we drove back to Mom’s house, I realized that I had lost quite a bit of weight.

My life has changed so much since October.

Most of my apartment is a mess as I have been hunting for my birth certificate. I need to find it to apply for charity benefits under a plan for people with cancer and no health insurance. The week before Christmas I ordered from Peapod. Due to a miscalculation I ordered 81 rolls of toilet paper. They are stacked in my hallway. I will eventually use them.

I brought laundry to my mom’s house on December 22nd. I have been wearing those clothes ever since. They have proven sufficient.

The truth is that I no longer “need” my things. This is a profound change in my life. According to Kevin, my now deceased naturapath, my Southern node is in Taurus. I am programmed to resist change and stubbornly attached to my things.

I sometimes dream about sleeping on the sofa from my home, but have not felt much of an attachment in some time.

I still refuse to sleep in a bed at my mom’s home, but I otherwise have settled down there. I have been living with my sister Kathy companionably for more than two weeks. I am much more attached to her than my things.

Cancer has changed many of my priorities–for the better.

I need my computer, my horseshoe-shaped pillow, a few pairs of warm socks, my phone list, a watch, and some clothes. Little else matters. Good thing. I’ll probably have to sell most of it to pay medical bills. As I opened all the Christmas cards that arrived during my absence I cried. There were pictures of former students with their new spouses or babies. There was a picture of my favorite law school professor with her husband, three children, and their dog. There were newsletters from friends from far away. Most of them do not know I have been sick. My “people” have always mattered more than my things. I brought their cards with me back to my mom’s home  to remember the blessings I have in my life.

Cancer can take my health. It can take my “wealth.” It can turn a person who loves her things into a nomad who is at home if she has her favorite pillow. But it cannot diminish my attachment to my family and friends. I am at home where I can connect with them. With a phone and a computer, home is any place I want it to be.

Nevertheless, in those final moments of wakefulness at the end of most days I recall what life was like before October, and I long for it to my bones. I had cancer then, but I did not know it. I felt instead that life was slowing down and that I was tired. I let that exhaustion lull me into sleep each night. I lived in a place surrounded by my things. I could open a box and dress myself in another time of my life. I could open a journal and relive an experience. I could open a photo album and recapture an expression or a shared experience. I could wrap myself in a quilt and float on a softly rocking sea of creature comfort.

Someday “Cancer” will be an experience in a box in a closet. It will be something I can (but most likely will not) open and try on for a moment. What will I remember about these times? I hope that I remember that it was people who bolstered me. I hope that I will remember the people who stood by me through times of fear and despair. I hope that I will remember that no “things” mattered as much as the things that preserved expressions of others’ hopes and dreams, like Christmas cards sent before the person knew that I had cancer. I will save my cancer sweater. I wore it to every treatment. It was a coat on cold days, a blanket during those scary moments when the Taxol flooded my veins with its waves of poison. It wrapped me in softness when I felt like there was a needle coming at me from every direction. It hid my hair as strands fell from my head day after day. I hope I throw out those pants that make my behind look big. Who cares how big it is? I just care that it stops bleeding. I hope I discard my fear of cancer’s recurrence and embrace the prospect of survival. Can you trap happiness in a box? I wish. Maybe I’ll save that red wig I have yet to wear and have it represent the sense that Cancer should not be answered with getting things back to normal. It should be answered with getting comfortable with change.

I think my Cancer box should have a sound track. I have a bunch of old cassettes with music for road trips. I should save some tunes for this ride. Eva Cassidy’s People Get Ready, Sting’s Fields of Gold, Josh Groban’s Awake, Louis Armstrong’s What a Wonderful World, Helen Reddy’s A Candle on the Water, Barry Manilow’s I Made it Through the Rain, Sam Harris’ Moon River, Dan Fogelberg’s Part of the Plan, Linda Ronstadt’s Shattered or her song about still being within the sound of someone’s voice, Vanessa Williams’ Sweetest Day, and Carly Simon’s The Garden.

The box should contain the sense of ambivalence that Cancer has brought into my life. I am hopeful and fearful at the same time. It has disrupted all my “plans” at the same time as it has helped me to drive without an itinerary.

Cancer has changed me, but I don’t expect to embrace it for the lessons it has taught me. I doubt I will need my memories to remember how it changed me. I expect my life to bear the marks of its coming and passing like a tree’s trunk reveals its experiences in its rings. I don’t know where I am headed any longer, but that’s okay. Wherever I am, there will be changes owed to Cancer. Whereever I am, there is my home.

Phoenix

On December 27th, I was physically broken. My hair was falling out in small clumps. I had a sore throat. I whispered because my voice had grown weary of crying for help that never came. My hands and forearms were dark smudges of bruising from I.V.s. My hands were raw and red from repeated washing. I had additional bruises on my upper arms and torso from heparin injections. My urethra was on fire from spasms around a catheter. I could not bear to sit up. I was hungry. My hips sported two- to four-inch long blisters and open wounds from radiation burns. My flanks were coated with paste to keep more sores dry. I suffered foot cramps. My bowel was spasming and oozing blood. I had a headache. I was hungry. I was filthy.

That afternoon I ate rice from a plate I could not see. Rice fell into my hair. When I managed to get up to use the toilet I brushed rice away because it looked like maggots grew in my hair.

After lunch I suffered repeated bouts of painful cramping. I pressed the call button. I called out for help. No one returned to check on me. My I.V. emptied and a new bag was not attached to my lead. A wound care nurse came to see me. She applied various treatments to my skin then left to get something and never returned.

I felt abandoned. I cried because it was only a few weeks since I had been feeling well. I wondered how much further I needed to go to die.

As the shift changed and no one came to check on me, I became convinced that I was neglected because no one wanted to help me. I picked up the phone and dialed zero. I asked for a priest. A priest called me and asked how he could help. I explained how and why I came to believe I might die of cancer prevention. The priest was reassuring. I explained how I had prayed for relief for days and received no answer. The priest said, “When you have prayed and heard only silence, then God’s answer is in the silence.”

I gave that serious thought as I waited for someone to check on me. Then it occurred to me, God helps those who help themselves.

I picked up the phone, dialed zero and asked for the patient advocate. No one was on duty. The operator said she would have a charge nurse come to see me. I told that nurse about my day. I told her I wanted a doctor to come to answer my questions. She summoned the best one I had met.

I told them that I had been ignored all day and would not put up with this again. I had questions. I wanted answers. I had pain. I needed painkillers. I needed toilet paper. If someone did not get it for me I would call a messenger service and a news reporter. I needed a plan for getting me released. I said, “I’ve been lying here feeling I have to be grateful for the treatment I’m getting because I’m uninsured.  But it has finally occurred to me that I have been an attorney for about twenty years and I never abandoned a pro bono client at his or her greatest hour of need. But that happened to me.”

I learned that my bacteria was commonplace. I could switch to an oral antibiotic. I could take a one-time per day anti-spasmodic medication. We could remove the catheter. A special bed had been ordered for me. I might be released the next day. I could take a cystological exam in a few weeks when my bladder had time to heal.

It was more information than I had received during my entire treatment.

The doctor left. Two nurses removed my catheter. It hurt, but the passing of it was also a relief. The nurse said, “You must urinate in the next six hours.” I stood and the bloody urine spilled from me onto the floor. Nurse E2 was irritated. She spread disposable bed pads over the mess. This made it impossible for me to walk to the bathroom dragging my I.V. stand. I whispered my prayers for comfort. I asked for another bed pad. E2 said,”It’s wasteful to use them without good reason.” I pointed to the ones she spread over the floor, “I’m not the one who uses them to wash the floor.” Her eyes narrowed. She next asked, “Why do you spend so much time in the bathroom?” I reminded her that I “have diarrhea after chemotherapy.”

A new bed came just as I was trying to get back to sleep. It kept me floating on air. For the first night in weeks I slept. A phoenix rose from the ashes of her own breakdown. I was empowered to save myself and did. Thank you, Jesus!

Petri Dish

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

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

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

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

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

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

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

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

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

You Can’t Get There From Here

Many years ago I drove a van to a college debate tournament in my capacity as assistant debate coach. We were lost and stopped for directions. The local passerby, when asked for directions to the highway, answered, “You can’t get there from here.” At the time, I was charmed by the notion that you could not reach a place on a road from a road. Later in life, my mom and I visited a coastal town in Alaska while on a cruise. The town boasted about ten miles of road that connected homes to ten bars and as many churches. When a fellow passenger asked how to drive to another nearby coastal town, the answer was the same. “You can’t get there from here.” One had to take a seaplane or boat to visit the nearest town. Many years later, I met a naturopath and told him that I felt that I had become a dying organism and I wanted to make some changes in my life that would transform me to a living organism with new goals and direction. He gave me the same answer. In his view, life was lived some place along two axes: horizontal life was unfulfilled. Vertical life had momentum and held the promise of new growth. He believed that a life misspent in horizontal endeavor needed to retrace its path to inception before it could pursue upward flight–a cosmic “do over” if you will. Through a series of “corrections” administered in his office, he did set me on a course to new growth. Now I find myself about to finish cancer treatment, and I wonder if, once again, it will seem all but impossible to move from where I am.

My doctor says that I will need to undergo tests every three months for many years. The doctors will look for cancer markers in my blood. They will perform scans of my body to search for masses. I will be examined for a recurrence of cancer in some new organ (as the cancer that was found in me has already been removed as part of my hysterectomy).

How can you ever put this disease behind you when, in as little as three months, it might recur? My cancer buddy Wanda was operated on in April and found to have a new mass in October. I have never lived in a state of fear before. I cannot imagine that this experience will be taken in stride. Whenever in life I have faced something awful, I have first asked myself what is the worst case scenario? If I can imagine myself handling it, then I have been reassured that I can handle it.

The idea of a recurrence shakes my self-confidence because I began my current odyssey with some sense of my own limitless potential for recovery. Now I come close to finishing a course of treatment that has taught me that I am not as strong as I thought. I began treatment feeling very well. I will complete it with a new humility. In five weeks, my treatment has broken down many of my body’s systems. I bleed from my nose, bladder, rectum, and skin every day. I experience pain during daily body functions that is so severe that I cry out in terror and pain many times a day. I have felt my intestinal tract throb with pain and, in doing so, cause so much more pain that I feared I might pass out. When I urinate I gnash my teeth and wail. It has been all but impossible to sit, to stand, and to lie down. I have never slept much, but lately I sleep two or fewer hours in some days. I have lost more than forty pounds and forced myself to eat and drink. I have showered once a week instead of every day because my skin flinches under this watery assault.

Life has become a condition I must encounter through a vast membrane of painful nerve endings. I no longer am secure that I can handle the worst case scenario. If this is what it is like to treat cancer, then how I can face cancer again?

There are things I can do. I can change my diet and eat what is described in literature as an alkaline diet. The literature says that cancer cannot thrive in an alkaline environment. I can oxygenate my blood by eating raw foods. Some say cancer thrives in an environment of cooked meals. Even as I say this I wince. A new discipline to run my life–not my definition of moving forward.

I can return to working out. I have a pulley system of weights that I can use as soon as I feel a little better. I don’t mind doing this. But I have never been the sort of person who feels the endorphins. Where is the joy in a life of cautious measurement of risk?

I think the best way to get where I want to go might be to pursue a path that focuses instead on the following:

1.    I need to connect with others through faith, family, and frienship. There is no question but that these have gotten me this far. I have a life filled with people I love who love me. My bonds with them are deeper still after they have helped me through this trial. I need to honor these connections and keep them strong.

2.   I need a pet. There are studies that a pet can extend life. I want to share my daily life with a creature that I love and who loves me. I want to be reminded every day that life is a series of interconnections that give life texture and meaning.

3.   I need to laugh every day. An antidote to fear is humor. I intend to find something to laugh about, especially me. Cheryl has become so serious that she needs laughter to give her life a less grave tone.

4.   I need to volunteer. I do not simply mean to contribute my time to a cause, but to stand up and be counted upon to speak out when something is wrong. If I am a bystander, then I am not engaged. I want to be fully engaged in my own life.

5.   I need to pursue my passions. I have not undergone this hell to do things that do not matter to me. Whatever I do I must do it with my heart.

6.  I need to be grateful. Many people have saved my life. I have counted my blessings and they are numerous. I will not forget that at my darkest hour there were people who filled that darkness with light.

I am sure that I will add to this list as I undertake recovery. But I believe it is possible to get there from here. I am counting on it.

Bad Day at the Office

On October 10th I called my three bosses to let them know I was out of the hospital and able to return to work. My online class had continued uninterrupted. I had posted the prior week’s lesson before I saw my doctor and before I was hospitalized. I posted a new lesson after my release. My two classes for another school were cancelled and needed to be made up. The director of the program was happy to hear I was able to work. At DePaul College of Law my supervisor (Martha) had covered my class conferences for the week. She would not hear of my returning on Friday, October 14th. She said that having a hysterectomy was like having a baby and no one can return to work within a week of having a baby. It would have been an hour and forty-five minutes lecture. She insisted I take the week off.

The comment was insensitive. A woman with a baby carries the baby for nine months, she delivers the baby, and she takes it home. And a woman with a baby does not get much rest. A woman with a hysterectomy cannot have a baby. She comes home alone and gets rest.

I recently opened a Twitter account and joined Hyster Sisters, an Internet group for women who have had hysterectomies. They would not take kindly any comparison of new moms and hyster sisters. In fact, members are discouraged from having screen names that mention motherhood as some of the sisters cannot have children and wish they could.

I started reading through emails received during my hospitalization and read one from a law student who mentioned her disappointment that I would not be returning to teach. It never occurred to me that the law school would terminate me during a one week absence for which my class was covered. I had been teaching there since 2006. I thought the student might have been confused.

The next day I received the following email from the head of the legal writing (the LARC) department.

Dear Cheryl,

I was so alarmed to hear from Martha that you had to have surgery last week, but so pleased to hear from her that you are already on the road to convalescence! Please take care of yourself and don’t overdo it in an effort to achieve normalcy too quickly. You have been through a lot—both physically and emotionally—and you can’t expect to bounce back with no set-backs.

I understand that you are eager to return to your class this semester, and I know that your students would be delighted to finish out the semester with you; many of them have expressed concern about your health and enthusiastic appreciation for your instruction. I need to let you know, though, that after fully consulting with the Dean of Faculty, I felt compelled to make the decision to reassign your students to other LARC III sections. I sincerely hope that you recover from the surgery immediately, but it has been my experience that people in this situation always have slower come-backs than they anticipate. I had no way to hedge against the risk that you might return to teaching this week and then right away, or a few weeks later, find yourself simply unable to continue. My first responsibility is to the students’ learning and the smooth functioning of the LARC department, so I made the decision that increases the chances of maximizing both. I am sorry if my decision disappoints you, and I hope that you are able to understand the situation from my perspective.

We have every hope and expectation that you will be fully healed and able to teach in the Spring semester, and we will welcome you back in January with pleasure. If we can do anything for you in between now and then, please let me or Martha know. You have my every wish for your quick return to health and the fullness of life.

Susan

It was a bad day at the office.

Even as I write about it a month after it happened I am shuddering. It is so painful to be the object of discrimination for a diagnosis. The students were informed that I was not returning and that they were reassigned to other professors’ classes on the day I underwent surgery. At that time they knew my doctor had said that I would be able to return to work the next week. There was no prognosis that indicated my unavailability for work.

I resent the assumption that all cancer survivors suffer setbacks that prevent them from working. My doctor told me that work would be good for me. It was not my supervisors’ place to decide for me that I could not fulfill my responsibilities. Indeed, when I told my doctor what happened he said, “They can’t do that, can they?” When I shared the email with one friend he said that his law school would not use that letter in a problem because it made it too easy to spot the legal issue.

I have been working since my surgery. Had I continued my law school class I would have completed it in another week or two. Moreover, I was managing my schedule quite well when I had undetected cancer and was bleeding to the point of needing eight packs of blood. When one of my doctors asked the head of internal medicine whether I should take a stress test before surgery the doctor responded that my life must have been a stress test for some time and I had passed the test.

What shocks me most is that three members of the faculty signed off on my termination and, according to their bios on the law school’s website, two of them have backgrounds in handling cases under the Americans with Disabilities Act and other discrimination laws.

The Equal Employment Opportunity Commission’s website (eeoc.gov) describes the Americans with Disabilities Act as follows:

“Disability Discrimination & Work Situations

The law forbids discrimination when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoff, training, fringe benefits, and any other term or condition of employment.”

It discusses cancer as follows:

“Approximately 40 percent of the more than one million Americans diagnosed with some form of cancer each year are working-age adults, and nearly 10 million Americans have a history of cancer.

“Despite significant gains in cancer survival rates and the passage of the ADA, people with cancer still experience barriers to equal job opportunities.  One reason individuals with cancer face discrimination at work is their supervisors’ and co-workers’ misperceptions about their ability to work during and after cancer treatment.  Even when the prognosis is excellent, some employers expect that a person diagnosed with cancer will have long absences from work or not be able to focus on duties. Today, however, unlike one hundred years ago when cancer was a literal ‘death sentence,’ most working-age cancer survivors return to work and have relatively the same productivity rates as other workers.” (Citations omitted).

The website goes on to explain:  “[C]ancer is a disability when it does not significantly affect a person’s major life activities, but the employer treats the individual as if it does.” it also states: “If the employer has a reasonable belief that the employee may be unable to perform her job or may pose a direct threat to herself or others, the employer may ask for medical information.  However, the employer may obtain only the information needed to make an assessment of the employee’s present ability to perform her job and to do so safely.” (Emphasis in original.)

The law seems clear. An employee with cancer who is perceived as being disabled is protected whether or not she is in fact disabled. An employer who fears a disabled employee may be incapable of working may request a doctor’s statement as to the employee’s capacity to work. It is impermissible to discriminate in the making of assignments or termination of a disabled employee based on the perceived (or real disability) if the person can perform the job or can do so with reasonable accommodation by the employer.

The legal issues I can handle. What is painful to me is that people with whom I have worked since 2006 made the decision to “sideline” me without picking up the phone to speak with me. They did not pay attention to what I told them. They expected me to fail. They underestimated my commitment, my stamina, my professionalism, and my will to succeed. I would expect at least one of them to have objected to this treatment for a stranger who walked into the clinic he founded and supervised.

I teach as many as seven classes a semester on as many as three campuses for three different schools. I am organized and competent. And I love what I do. I receive low pay and don’t care. Who I am is tied up in what I do. It is not a hobby. I put in extra hours every year to meet with students and former students to counsel them in their career development. It is time spent willingly.

I took the diagnosis of cancer as a challenge. I took the news of my termination much harder. Much harder. I have shed more tears over this action taken against me than my diagnosis. Until I received that email cancer was a medical condition. It became something that undermined who I am and what I stand for.

October 11th was a bad day at the office.

Contents May Have Shifted

On the morning of Sunday, October 9th, one of my surgeons came to see me. She examined my incision and found things in order. She planned to run at least part of the Chicago Marathon that morning with her husband. Then she would take a nap before returning to work. She did not authorize my release before she left.

My brother had returned to Dallas. My sister Kathy and mom would come to pick me up–once I was ready to leave. My sister did not know Chicago well, but she had a GPS. My mom knew the city but disliked city driving. They were eager to pick me up ASAP while it was light outside

No one wanted me to go home alone to my apartment in the city. I had to return with them to my mom’s home. I was not happy about this, but I relented. When Dr. G awoke from her nap, she called in and gave me the “green light” for departing.

Mom was delighted to learn that we could get a parking voucher to offset the cost of parking while my sister came upstairs to collect me. The idea of paying to visit a sick relative stuck in her craw and gave the rest of us an excuse to tease her. My mom waited in the hospital lobby. Her gout had flared up and had made it painful for her to come up to my room.

I had the doctor’s permission to drive and to return to work. I was told my staples would be removed in three more days. I received some prescriptions. We piled into Mom’s car with Kathy at the wheel. The GPS chose our route. It featured streets with immense, deep potholes.

As we bounced our way south and then west for a trip to the north I tried to take control, but that infuriating voice of the GPS kept drowning out my suggestions. Does anyone like these bossy contraptions? Why is it illegal to speak on a phone or text while driving, but not to look at the device’s screen to judge your next move?

I gripped the handle overhead and lifted my behind off of the seat as we cruised up and down the road. Each jolt rippled through my body like the animation of Dr. Frankenstein’s monster. Something was not where it belonged. I thought it was my bladder, which had been functioning well since my surgery. The pain was much worse than anything I had encountered in the hospital. I was barely suppressing tears. I kept thinking of the notice that used to be on every box of cereal and bag of chips I ever bought: Contents may have shifted during transit. My bladder appeared to be balancing on something dagger-sharp. It had never done so before. I imagined it had moved now that other organs were gone.

We were about to merge onto the highway when we saw a traffic jam stretching for miles north. I felt panic much greater than when I reacted to my diagnosis. Ten minutes later I was in so much pain that I begged my sister to exit the highway and head for a McDonald’s. My bladder had been operating, but it seemed the center of my central nervous system as we hit every bump in the road. The GPS was unhappy–it was “recalculating” with a miffed tone.

Kathy pulled into the McDonald’s parking lot. You may think the menu is too full of fat and calories, but the bathrooms are always clean. I stumbled from the car with my body doubled over and headed for the ladies’ room. Moments later I was a new woman! My bladder had tipped off of the fulcrum on which it had teetered. I never felt any serious pain again.

We reached Mom’s home without any further tears. Of course, once we were there, we were battling over where I would sleep. I have never slept more than a few hours a night on a regular basis. I have tried natural remedies, exercise, over-the-counter sleeping aids, hypnosis, even an occasional dose of Nyquil. I do not like to sleep in my bed. The last time I slept in my own bed was 2008. It was a bad night.

I wanted to sleep on Mom’s couch. She wanted me to sleep in her bed. She would sleep on a couch. She had the gout and needed her sleep as much or more than I did. The bed had no headboard, no handrails, and it was high off of the ground. I would end up lying on my back like a June bug. I prevailed, and the night was difficult. I wanted my couch, my quilt, my pillows, and my nightie. I managed a short nap while I wore the same clothes I had worn the day I checked in at the hospital. It was my first sleep since surgery.

I asked myself, why are you incapable of sleeping? I had my reasons. I kept thinking about the priest’s administration of the last rites, that child’s prayer about dying before I wake, the short life line on my right palm, those darn Cancer Center of America commercials in which Peggy discusses the fact that she had no expiration date, the due dates upon my forthcoming hospital and other medical bills, and my small bank balance. Sleep was fraught with unresolved issues.

How many have likened sleep to death? I now find myself unwilling to surrender any portion of my day to troubled dreams or dreamless sleep or death’s long sleep. Less than a week ago I was insisting my family respect my having signed a Do Not Resuscitate order. Now I am fighting for my life.

I think about my Grandma K. When she suffered a stroke, we called the priest to perform the sacrament for the sick. When the priest finished his talk with her, he annointed her with holy oil and pronounced her ready to pass.

Grandma said, “You mean to say that I am ready to die?”

The priest nodded.

She responded, “Shit!” Then she covered her mouth with her hand and giggled. Foul language was, in her view, a sin. Catholics are taught that even a thing that is not a sin is a sin if we perceive it to be so. By sinning she was no longer “ready.” She was in her nineties. I also recall a client’s unwillingness to complete her estate plan because it would mean she was ready to die. She was in her eighties.

Why do some of us wake up every day wishing that we had died in our sleep while others resist sleep so as to have more life? Who is braver? Who is wiser? Who lives longer?

Ever since I learned that I have cancer the contents of my life have shifted in ways I would not have predicted. Sometimes the box looks a little light, but the gravity of my experience has caused this perception. In fact, my diagnosis has made dense and more meaningful some of my more shallowly developed viewpoints.

For example, I have long been what others call a “bleeding heart liberal.” I have supported funding for things like medical care for the uninsured. When I did not have the funds to pay for health insurance, I supported a national health insurance plan that might lower the price of care. My beliefs reflected my sense of economic justice and my self interest. I’m not sure I was compassionate.

Since my diagnosis I have met many people in more dire health and economic situations than I face. I have been deeply moved by the sight of a man with cancer leading two profoundly disabled children with him through his treatment. He has no babysitter to help him. I have seen children leading a mother or grandmother through the county hospital because their relative was too frail to manage her own care. They are their parents’ caregivers when young enough to still need someone else’s guidance. A tattooed man in biker garb suffering a relapse of his brain cancer has insisted that I precede him for care in a first-come, first-served setting because ladies go first. A breast cancer survivor has begged me to get her some help when pain has overwhelmed her. I have given my seat in a crowded waiting room to someone’s grandmother who probably rode a couple of buses to show up for chemotherapy. I have seen young men sit among  many older persons so that they can take their turns absorbing poisons that kill healthy and cancer cells. These are people who love life no matter how difficult it has become.

Suffering, poverty, and human dignity have faces that are becoming more and more familiar to me. In the past I have often given money to a homeless person on the street rather than to a charity because I respond to the individual homeless persons as people. But now I see the role of institutions, like my county’s hospital, in the care of the sick, and I don’t think I will ever be able to turn down a call for help from any of the institutions, foundations, and charities that serve cancer survivors and their families. Whether or not I have money to spare, I have time they have helped to make for me. I should give some of it back so as to help others.

I think the scale shows that the new configuration of my character is less and yet so much more than when it started. It is less remote, less self-serving, less insensitive. It is more compassionate, more appreciative, more committed. The trip I am on is making a difference.

Thar She Blows!

I woke in the OR’s Recovery Room to the staccato order to “wake up!” I had been moved to a hospital gurney and was wrapped in a blanket. The back had been raised so that I very nearly sat up. To say that I was groggy was an understatement. I was overwhelmed by the return of my senses. Every word spoken by the surgical nurse was an assault on my ear drums. I was numb over most of my body, but my bottom lip was raw from where a breathing tube had crushed it against my teeth while I was unconscious. The nurse asked me how I was doing. I know I nodded, but I wanted to go back to sleep. I stared at her and had the distinct impression that she was about to say, “Use your words.” I was not a toddler, but I felt like one.

“I’m fine.” I said, although it was way too soon to come to that conclusion. My joints were stiff and yet my arms and legs felt as loose as jelly at the same time. It reminded me of Harry Potter’s broken arm after it had been “mended” by an inexpert sorcerer. The story of my life had paused for my surgery in a manner entirely different from a night’s sleep. A gap had appeared. My worst fears had not been realized. But I was not the same person either. I was slower. Deliberate. Lost. Fuzzy. “Fixed.”

The area surrounding my incision was numb, but more so even than when I was a young person and had too much to drink. In those times, my lips could be open with drool pouring out and I would not know it. The numbness was what I imagine I might have felt had I lost a limb. I knew where the top of my body had been sewn back to the top part, but I could not have found it.  I thought fleetingly of a sobriety test. If someone had said, “Put your finger on your incision.” I would have fared no better than if someone spun me around, handed me a stick, and told me to break a pinata.

I vaguely recall the surgeon telling me his findings. There had been a tumor the size of a four-month pregnancy in the uterus and another in the right fallopian tube. But it did not appear that the cancer had spread to other organs in the abdomen. He thought they had removed all of it. I might not need any further treatment. We would wait for the pathology report. I nodded, but this had no meaning for me yet. I was somewhere between insensibility and closing my mouth while breathing. It was not my finest hour.

No rest for the weary. An orderly wheeled me to a room on yet another floor. We sailed down the hallways between the Recovery Room and my room. Every jolt of the tires over a threshold rattled me. I knew who I was and where I was, but I thought of my Grandpa K, who, after months of hospitalization, asked us to remind him why he went to the hospital in the first place.

Post-surgical treatment is much harder than what precedes it. When we reached my new room the nurses asked me to get off the gurney and walk over to my bed. It was not painful, but it was difficult. I had no idea how much stress my incision could bear. I guarded my stomach with a pillow that I clutched with one hand that sported new needles and tubes. My other hand and arm still felt useless because of needles that had been left for future use. Each step was feeble and rewarded with the nurses’ words of encouragement. Climbing into bed proved to be more than I could manage. I sat in a chair so that I could feel the floor beneath my feet.

My family came to see me. My mom, sister, and brother were there. My mom seemed focused on how long the day had been. They had risen early, driven downtown, waited a long time due to the delay caused by my having started to bleed and the length of time I was in recovery. My mom seemed inordinately upset about the fact that they had to pay for parking. People who live in the suburbs are not used to paying for parking. My sister and brother laughed about “why we had the boy (my brother).” Apparently “we” needed the boy to drive on expressways and city streets and to parallel park. Not that he had to parallel park. They circled back to the fact that there was a charge for parking.

What followed was a long night focused on one goal and only one goal: passing gas!

I did get into that hospital bed. It was an obstacle course. The bed and its rails had to be lowered. I had to climb up at the place the mattress folded. Someone had to help me swing my legs up onto the mattress. Plastic sleeves were applied to my legs. They massaged my legs to prevent blood clots. I had a morphine drip that I could activate a certain number of times per hour. Another tube ran from my catheter to a bag attached at the side of my bed. There was a TV remote and a call button. I had a cell phone and a hospital phone. I had a big cup of ice chips. It wasn’t as demanding as my desk at home, but it felt like command central. Lying in a bed had become a production.

I had a roommate. Like me, she was uninsured. The hospital was in a hurry to get her out. While I tried to drift back to sleep, she called her daughter trying to get her to come pick her up. She asked the nurses for extra medical supplies so she would not have to buy them. She ended up being discharged at about 10 p.m. in a taxi. I kept thinking about that saying about guests smelling like fish after a few days. I worried that I, too, might be kicked to the curb as soon as I was able to leave.

A couple of hours after others were settling down for the night the nurse had me up and walking. It was not all that painful. But I felt shorter in the front than in the back. Standing straight took effort. I feared that I could rip open at my new “seam.” I shuffled from my bed to the bathroom and back several times with a nurse or orderly watching my every move, measuring whatever fluid leaked from me. I sat in my chair until I was tempted to nod off. However, as each hour passed, it felt like my stomach expanded. There was pressure building. I felt like a tire rather than a balloon. It was going to take quite a bit of gas before I popped, but the tension was unrelenting. I would have begged for relief if I thought it might be forthcoming. Every nurse who passed through my room that Friday night and Saturday morning urged me to walk, then marveled at my “loco”motion.

I would have given a fortune for a dose of Gas-X. When I called my mom she told me to ask the nurse to insert a tube to help the gas come out. Yikes! Of course, when she was a child it was common to tell a sick person, “Come over here and I’ll give you something to cry about.” I got up and walked around the hallway while my nurse dragged my morphine drip. Things were not yet so painful that I wanted any more invasive procedures.

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