Not Down Or Out

It could be worse. I might not be laughing.

Category: Cancer

Taking Off

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

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

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

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

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

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

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

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

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

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

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

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

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

Signs

OLYMPUS DIGITAL CAMERA

When I was a young adult I read Cheiro’s Language of the Hand, a detailed examination of how to read a palm. http://archive.org/details/cheiroslanguageo00hamo. Once I read it, I read numerous books on the subject. I still recall many of the details of the subject after at least forty years. I never viewed palmistry as sorcery or witchcraft. It is not a tool I use to predict the future any more than I rely upon my doctor’s diagnosis to predict how well I will live or how long I will live. As a result, I see no conflict between religion and reading a palm.

I read my own palm first, and I still have the photocopy of my palm that I used to map out the signs that portended fortune and misfortune. It demonstrates today the truth of one of the lessons of palmistry: you make your own fortune. The dominant hand (in my case, my right hand), has changed numerous times over the past four decades. My left palm has more lines that reflect stress or worry, but the main lines remain remarkably unchanged.

They say that the non-dominant palm reflects the future you are born with while the right hand reflects where you are headed; provided that you remain on your current course.

Left Palm

Left Palm

My left palm is marked by strong, long, and deeply etched lines. What has changed since I was a teen is my marriage line. When I was young, neither palm showed an unhappy marriage in the offing. Today, both palms show a deep line that starts parallel to the base of my little finger and then dips to run down toward my Love Line. There is what is called an “island” at the point where the line dips down–a sign that the one who caused the divorce had problems of his or her own that led to the marriage to its end. While there are some minor breaks in each of those lines on my palms, they carry all the way across to the base of my thumb–the part of the palm that governs passion and lubricity (passion’s lewder sibling). My left palm also shows a very long and strongly marked Life Line.

Right Palm

My right palm shows that I am sometimes plagued by doubt and insecurity. There are more lines that reveal stress. There are grilles and many of the lines are fainter than in the left palm. This is normal. The lines change in part because of the way the dominant hand holds a tool or bears the weight of exertion.

What interests me most is that my Life Line on my right hand has changed in the past two years. When I was a child, it ran long and ended down at the base of my palm. Several years ago I noticed that a branch had formed at what some readers claim is the midpoint of my life. One tine of the fork touched my Fortune Line. The other ended abruptly.

At the current time, the tine of the fork that used to dissipate abruptly has extended deep into my palm, almost to my wrist. It is faint, but it is there.

According to my copy of Cheiro’s book (revised as of 1970), “the germ of disease or weak point in the system must be known to the brain in all its stages of advance and attack, and will, therefore, be registered by the brain on the hand through the nerve-connection between the two . . . .” Cheiro believed the palm predicted the cause and nature of certain diseases, sometimes on the Life Line, sometimes on other parts of the palm.

My right palm shows weakness, but now renewed longevity. Crossing the Life Line are numerous lines that suggest there is stress and challenge, but parallel to the Life Line and closer to the thumb is a faint line some call the “sister line.” The presence of a sister line is regarded by some as favorable. It can represent the power of others to help the subject through dark times, sometimes recovering great vitality.

My point in writing about my palm is not to predict or confirm my future or fortune. I raise the subject because of what others have to say about the subject of palms and because, following treatment for uterine cancer I find myself watching for signs more vigilantly than ever.

I keep countless journals in which I make notes about peculiarities and coincidences. I collect natural wisdom in a file that I study sometimes at night before I go to sleep. I have read countless books and articles and blogs that talk about vitamins, minerals, and herbs.

I have not gotten to the point where I change my behavior without careful consideration. I am not given to act without doing my research and testing my theories against those of others. I am not the type who wears tinfoil atop her head to prevent alien beings from reading her thoughts. But I am paying attention to things I never monitored before.

www.danheller.com (Culkin, Gibson and Breslin from the movie Signs)

http://www.danheller.com (Culkin, Gibson and Breslin from the movie Signs)

In the end, I keep coming back to the notion that we make our own futures. Whether I am responsible for all that befalls me or merely able to take precautions when alerted to matters beyond my control that might threaten me, I am watching the signs now. In the words of Tiffany (played by Jennifer Lawrence) in Silver Linings Playbook, if I’m the one “reading the signs,” things keep looking better all of the time.

Catastrophizing

Feeling snowed under.

Feeling snowed under.

Did I mention that next Friday I have an appointment for a gynecological exam and will likely see the “oh-so-very-NOT-nice” physician’s assistant whose examination of me left me upset for weeks? Did I mention that this has me feeling very anxious–as do all doctors’ appointments?

The best part of blogging has been reading the blogs of people whose situation has been worse than mine. I know how that sounds. But the other bloggers’ sharing has given me a perspective on my own experience that I could not have gotten from my own experience if I chewed on it until it was fully consumed and digested–a process that might have taken my whole life.

Until my diagnosis with cancer, I had never had an operation. I had never suffered a serious illness. The most serious medical procedure done on me was the inpatient removal of a mole that was chafed by a bra strap. The most serious pain I had ever experienced was passing a kidney stone at about the age of 20. That experience proved more humorous than serious.

While I was in the emergency room to determine the cause of my pain the doctor decided to perform an internal gynecological exam to rule out some gynecological problem. Following the exam, I continued lying on the table while I waited for results. Then a hospital administrator escorted a university student into my curtained “bay” so that the student could ask me questions about my use of contraceptives for some classroom statistical analysis. I agreed to answer the questions. The administrator helped me sit up. The nurse had not properly secured the end of the table when she took down the stirrups at the conclusion of my exam.

When I sat up, the end of the table fell down and I was catapulted to the floor. I landed on my hands and knees with the hospital gown open from neck to knees. I landed outside of the narrow confines of the curtained bay. There I was, naked and on all fours, in front of everyone, including someone with whom I went to school.

It goes without saying that there were apologies, and many hands reached down to help me rise, and no one laughed. Which seemed amazing to me at the time, because I could not stop laughing! Seriously, the pain from the kidney stone was the worst thing I had ever felt in my physical life. My hands and knees “smarted” in a way that had me thinking about that old adage, “Come over here and I’ll give you something to cry about.” I was blushing the color of a beet until it seemed every inch of my face might explode. And everyone was looking at each other like it might be the end of the world.

It wasn’t. The adage proved to have some relation to fact. There were worse things than the pain I experienced from passing a kidney stone. I could be in even worse pain, naked, on a germy ER floor, in a down facing dog position as others (one of them a fellow student holding a clipboard) tried to get hold of “something” naked, in an non-salacious manner . . . in an effort to help me stand up. Oh, the perspective this gave me helped me accept many of life’s indignities that have followed.

I still have not had a good cry about having uterine cancer. I am not sure I need to at this point. I was nonplussed when I received the diagnosis. In retrospect, it explained so many things that I had been experiencing such as heavy periods and a late end to menopause. I reacted by trying to put the entire puzzle together. I also had a very fatalistic idea about what it meant to have cancer. I just assumed that my life was over and was trying to figure out what I would need to get done before I died. Making checklists is a hobby. I never did make out that checklist.

The doctors were much more optimistic and they were being extraordinarily negative. Their entire focus at the time seemed to be on my inability to survive surgery because of my blood loss (I needed 8 packs of blood to reach a minimum state of readiness for surgery) and my seemingly poor general health. But one doctor, the head of the internal medicine department, kept coming back to report that I had passed another of his department’s tests. It appeared that I might only have anemia and cancer.

I counted my blessings day and night. I am serious about this. I did not have a book to read. There was nothing I cared to watch on TV, and I had no idea if I was being charged for using it and had no medical insurance. When my sister Kathy flew in from DC she brought me two magazines, a pen, and some paper. I loaned a magazine to my roommate and covered the paper with my scribbled lists of blessings. If my luck had run out, then I wanted to recall that it had been a good run. If the Law of Attraction was at play, then I wanted to be in a positive place to attract good health.

I did not sleep for nearly a week (other than during surgery). The closest I got to it was that micro sleep you sometimes feel happening during a long drive. One minute you are on the turnpike in Indiana and the next minute you are seeing signs for exits to Cleveland and are wondering, “What the hell happened to most of Ohio?” You have been functioning, but not optimally.

I have shed plenty of tears since October 2011. I was devastated to learn that the law school terminated me. Radiation was a nightmare. The week after treatment ended was horrific. To this day I feel like I might have died but for my sister and mom “springing” me from the county hospital. I have never been so afraid or helpless. Recovery from treatment was marginally worse than what I felt while going through six weeks of radiation and chemo. Radiation cystitis had me crying twenty-something times a day in the bathroom until that became such old hat that I just gritted my teeth and endured.

But others’ blogs were like speed markers on the road that let me know I should pace myself on my tendency to manage fear by imagining myself handling the worst case scenario. No one ever knows what will happen next or how she will handle it. And the saddest truth about cancer is that others have handled/are handling much worse than I can imagine on my own. They do manage. Sometimes angrily. Sometimes with frightening resignation. Often with grace, humility, and even humor.

I am covering my mouth with both hands and trying not to cry as I think of what some have shared about their experiences. I know that my odds are good for long-term survival. It was stage one with complicating factors, not the stage three cancer the surgeon first described it to be. It was a slow-growing cancer. There appears to be no evidence that cancer spread or remains. My surgery went very well. I am no longer in daily pain. My other side-effects can be handled.

When I agreed to adjuvant radiation and chemotherapy I did not know that they could one day lead me to another cancer. I was awake, but still in that stage of micro sleep. I just kept driving until I saw signs for Cleveland, one of which is an exit marked Strongsville. I took that exit and have put down some roots. I could spend my days catastrophizing, but that might only make this tougher.

Source unconfirmed

Source unconfirmed

The bloggers who have shared their struggles and victories are daily reminders that I should live in the “now” and not get ahead of myself. Whatever is ahead of me will be handled–ready or not–and handled better if I focus on the present and do not let anxiety rule me.

There was a time when I could laugh at the experience of landing naked and in pain on the ER floor while answering questions about condoms and diaphragms. It’s harder to do that when you’re dealing with cancer. But I still have a sense of humor. And I have been shown by some wonderful people that there are worse situations and that I can face them if I must. Life is worth it until it isn’t. And, even then, there will be hope that life’s ending can be endured.

So, I am every day grateful for the community of bloggers who have so bravely shared their challenges and fears. Without your courage and generosity, I could be wasting my life catastrophizing.

If you have never seen Loretta LaRoche, you should. She is the source of the word “catastrophizing.” http://www.youtube.com/watch?v=ggGoe_y5WqA. In that video she talks about how we can sometimes take our tough challenges and magnify them until we become hopeless. Here is a link to a video of her discussing the Joy of Stress: Party Pants, in which she reminds us to embrace life’s adventures rather than always putting joy off. http://www.youtube.com/watch?v=_5tOFdSJZJk. Here’s her video on Pessimism vs. Optimism. http://www.youtube.com/watch?NR=1&v=kqE9cuWxdqo&feature=endscreen. She uses humor to help people handle stress. Her message is resilience. I think she may also be reading many of the blogs that I read about living after a cancer diagnosis. She seems to understand that we can keep smiling–sometimes for a moment, sometimes for a day, sometimes longer.

Did I mention that next Friday I have an appointment for a gynecological exam and will likely see the “oh-so-very-NOT-nice” physician’s assistant whose examination of me left me upset for weeks? Did I mention that this has me feeling very anxious–as do all doctors’ appointments? Maybe I’m already feeling better because of the messages of hope in so many other people’s blogs.

Facts of Life

My mom swears that I was very young when she took me to the zoo and I called out on sighting elephants, “Pachyderms!” If this story is true, then I owe it to my mom. She set me in front of the aquarium when I was a baby and let me watch the neon tetras race from one side of the tank to the other. As a result of this eye exercise, I learned to speed read before I started kindergarten. She also taught me to call them as I see them.

When I was set to begin first grade, my mom volunteered to cover the first year reading materials in brown paper bags. We sat together at the kitchen table for two weeks, during which I practiced cutting the bags to size. When my fingers grew cramped from cutting the paper and folding it to fit the textbooks, my mom had me read aloud from the books. By the time that school started I had read the entire year’s curriculum.

I was not nearly as well prepared for sex as I was for school. Oh, we had the talk about the facts of life when I was nine. But I was only about six when Gregory, a nasty little boy who lived down the lane, told me about sex. I recall that he stuffed a jump rope down his pants. Then he tugged one of the handles through his open zipper and explained the mechanics of intercourse in the world-weary way of a boy who knows just enough to be dangerous.

I can still remember my disbelief. I stared at him for a long moment and then said, “I have seen your mother, and I can well believe that she has done such a thing. But my mom would never do anything like that. Not ever!” He laughed a little, but then looked just insecure enough for me to press home my point.

So I poked him in the chest with my finger and said, “Ohh, yeah, your mom looks like she would do such a thing, but my mom wouldn’t touch that!” Here I gestured dismissively at the piece of red wood dangling from his open fly. “Because she is a lady.”

When I told my mom what I had said she bit her lip and shook her head in disbelief. Of course, I told her about all of this when I was in my forties.

In high school I was voted to be many things. I don’t remember all of them. But I do recall that my class voted me second most innocent girl. I was outraged–not that there was any point in denying it–and not for the reason you might imagine. The girl voted to be the most innocent girl was a cheerleader. I barely knew her, even though I was voted first or second friendliest girl in the class.

I was outraged because someone told me she was a “slut,” and I did not want anyone to imply the same thing about me. I am pretty sure that I had no idea what it meant to be a “slut” back then.

Oh, I knew by then that Gregory had not lied about the mechanics of intercourse. I knew many things about sex in the same way as I knew that pagan babies in Africa somehow were nourished when I cleaned my plate. All the information was acquired secondhand.

I understood that good girls waited until marriage. My Grandma Elsie loved Harlequin romances and Barbara Cartland novels so I also understood that love was a heady experience and its physical expression was something a girl had to be prepared to halt if she wanted to be a good girl. I knew that good girls were good. I even knew that bad girls had more fun.

I recently described my outrage at being placed in the same category as someone people called a slut and admitted that I am now ashamed of myself for having been quick to distance myself from another girl my age merely because someone else had judged her. I think the decision not to judge others is one of the biggest lessons I have learned in life.

I am not prepared to apologize yet for my comments about Gregory’s mother. She was, after all, a mom who wore a bikini while she watered her lawn. No one who had a grown kid wore a bikini back then. There I go again, judging.

I once had a friend who addressed the issue of “judging others” by surrounding himself only by people just like him. If he only saw people who would act as he did, then he could avoid the urge to judge.

Another friend defended his judgments. When I asked him whether he had an opinion on everything, he tipped his head to one side and asked, “Isn’t that the object of an educated mind?”

I have a friend who rationalizes judgment as discernment. She is always speaking of people as falling into categories based on behavior. At times it appears that all the categories are on the same level. But once in awhile I hear judgment made about an entire category of people sharing a trait as though that made them similar in all material respects.

I felt the sting of another’s judgment this week. I received a letter from one of the schools at which I teach. The school has been investigating the circumstances surrounding my termination on the day I underwent emergency surgery for uterine cancer that presented itself as hemorrhaging.

One supervisor (Martha) ordered me to stay home and not return to work when three days later I told her I was going to be able to teach my next class. She knew I had been terminated, but did not tell me. Her statement was that people who have hysterectomies, like people who have babies, must take longer to recover.

That woman’s supervisor (Susan) sent me an email the next day and informed me that she already had terminated me because people in my situation always suffer setbacks and she could not take the chance I would return only to become too sick to continue.

The deans apparently signed off on these acts. The email I received giving notice of my termination states that the dean of faculty may have agreed to my termination. The law school’s dean later agreed to pay me the remainder of my stipend for the semester, then he or someone else stopped payment. It took me ten months to get payment.

The investigator wrote to me this week:

I’ve completed my investigation into your allegation that Professor Martha . . . may have violated the university’s Anti-Discrimination and Anti-Harassment Policy and Procedures.  I have determined that she did not violate the policy; therefore, OIDE considers this matter closed.  I have attached a letter for your reference.

I feel judged–to be a fool. My complaint to the university, which it solicited from me after learning I also have complained to the Equal Employment Opportunity Commission, was not about Martha. It was about a series of events triggered by Susan. I could not then determine what Martha’s role was in the entire matter. There also is no mention in the letter of events that have occurred after my initial termination–events I would characterize as retaliation for the initial complaint.

I have written to inquire about the status of my complaint, which involved others and other events. So far, no response.

I do not want to judge those who judge me, but today I am feeling a little more affinity with my friend who asked when I challenged his judging of others, “Isn’t that the object of an educated mind?”

It seems to me that there is a giant pachyderm in the room that some others refuse to see or cannot name. Does the university really want to ignore an email that puts in writing discrimination on the basis of a diagnosis of cancer? Does it want to ignore the fact that my doctor had said before and after surgery that I would be able to return to work the following week? Is it familiar both with the Americans With Disabilities Act’s explicit recognition that a cancer diagnosis can make a person particularly vulnerable to discrimination and its implicit recognition that people can be discriminated against unfairly even when their conditions appear to be a disability but those conditions do not actually prove disabling?

My question: Are these the facts of life? I feel, for the second time in my life, like someone from the neighborhood has shared with me an important lesson on how a person gets screwed. I feel that once again, the message might be right. This might be how a person gets screwed.

It Will Be a Sunny Day

Last Photo of Arlene

Last Photo of Arlene

We soon will gather to say goodbye to Arlene and Dan. She died on April 7 in Richmond, Virginia and he died on December 4 in Cape Coral, Florida. Both were cremated. Their children are bringing them home to the Cremation Garden in the neighborhood in which they lived for most of their marriage.

I visited the place yesterday because my mom, Arlene’s only sibling, does not want to be late and wanted me to scope out the route and time it.

Later that afternoon my mom asked me to pause in my relentless clicking of the TV’s remote to let her check the weather forecast for the coming week. The meteorologist predicted it will be a sunny day. I wondered aloud whether the weather could affect the experience of a memorial service. My mom thought so. “No one wants to get wet,” she said.

I said, “I will cry anyway.”

My mom looked at me and nodded, but there was no question but that she wishes for her sister a sunny day.

I woke this morning thinking about sisters. Sometimes we live all of our lives in each other’s company. Sometimes we live so far apart that there can be miles between us when we are in the same room. We’re a little like socks in a drawer.

I’m always finding that one sock stays where I put it while the other slips down my ankle and disappears into my shoe. How is that I can have a pair of socks and one is clean while the other always seems in need of a pre-soak? There are even socks that have lost their mates. Did one fall along the way? Did one go down the drain of the washing machine? How does a sock go into the dryer and never emerge? I never seem to discard the remaining sock. Instead I either keep the remaining sock in the hope the pair will reunite or I pair it with another sock and the new pair continues to see the world.

I started hunting through old photos for pictures of sisters. Here are a couple that I found.

Hattie Fitzgerald w Margaret and Doris U

In this photo, my great grandmother Hattie sits alone in a chair. Beside her, sharing a single chair, are sisters Margaret and Doris. Hattie made no effort to edge closer to the two women sitting beside her. There is no reason why she would. All three women are my relatives, but Hattie was not related to anyone else in the photograph.

Sisters Doris and Margaret started their lives thirteen years apart, had sixty-six years together, but ended up spending many years apart, too. Doris died twenty-three years after her sister did. They were nothing alike and yet very close. Margaret went to school and became a school teacher. Doris rode her pony to town when she started high school and then rode home and never went back. While Margaret “saw the world,” Doris lived on the family farm nearly all of her life. In fact, Doris died within weeks of auctioning the farm, almost as if she knew that, without it, she was no longer tethered to this world. Moreover, Doris had a twin sister named Dora that died moments after birth. They never got to spend a day together after being so close during gestation that they shared a womb.

Hattie also was born an identical twin. She lived to be ninety-nine years old. She outlived her husband and one of her two sons. She also outlived her sister Susie. Susie died at the age of twenty-six of rectal cancer. Hattie never had a day’s serious illness in her entire life. As I looked at the photograph, I tried to imagine what it would have been like if Susie had been alive, too. Would Hattie and Susie have shared a single chair, as Doris and Margaret did, or would Hattie and Susie have insisted on having their own chairs? There is room for two in that chair. Is it possible that Susie’s spirit followed Hattie throughout Hattie’s life? I guess not. It does not sound like much of an existence, even for a spirit.

I have a photograph of Hattie and Susie in my home. My dad never would let my mom hang it in their home during his lifetime. He thought the photo was awful. The heads are touching, which might lead one to wonder whether the sisters were conjoined. They were not. I kind of like the picture. Susie’s side shows some more damage than Hattie’s side does and her expression seems distant and less happy, as if she might have known her time here was short.

Hattie and Susie Sullivan

Hattie and Susie Sullivan

I have other photographs of Susie that show her out with a beau or standing at the garden gate. In those photos she is serious but not at all remote or reflective.

My mom and her sister were not close. They lived under the same roof for seventeen years, and were only about three years apart in age, but they never told tales of shared misadventures or secrets whispered between beds set a couple of feet apart in a shared bedroom. My aunt told me several times before she died how my mom brought me (then a baby) to Arlene’s graduation from St. Anne’s Hospital Nursing School. They stood up for each other when they married. We spent holidays together and many family celebrations. The sisters did not often pick up the phone and chat, but there were no fights. When Arlene and Dan retired in Las Vegas, the sisters sent each other cards and notes every birthday, holiday, and anniversary.

Arlene and Dan came to Chicago for a visit a few years ago and my mom and I went to dinner with them and Dan’s sister Ann. We had a nice evening and caught up on family events. When word came that Arlene was accepting hospice care, my mom flew out to D.C. to visit with my sister. Kathy and Kathy’s husband Jeff drove my mom down to Richmond to see Arlene. It was during one of their visits that Jeff photographed the sisters together for the last time. My sister, Arlene’s son, and Arlene’s daughter-in-law stand behind Arlene’s wheelchair.

In the photograph, my mom is the one who appears distant, but she was the one who made the visit happen. She returned to Richmond again during her visit with my sister. When it was time for my mom to go, Arlene was asleep in her bed and my mom did not wake her because she wanted to leave open the possibility that they would see each other again and spare both of them the exchange of “goodbyes.” Arlene died several days later.

The limitation inherent in every photograph is that it captures one moment in time and never really captures history beyond that instant. Like the socks in a drawer, sometimes sisters are rolled together so tightly that you cannot tell them apart. At other times they are so far apart that it feels like they will never be reunited. No matter how far apart these sisters may have walked in the seventy-four years they lived as family, what I know for sure is that my mom is hoping that, for her sister, tomorrow will be a sunny day.

There’s Someone at the Door

Barricaded back door.

Barricaded back door.

I used to enjoy watching the TV show American Gothic. It began with disturbing images of a Southern town with Sheriff Lucas Buck who had piercing eyes and the devil’s own smile. At the end of the opening sequence a child in a rocking chair would repeat the haunting phrase, “There’s someone at the door.” The child pronounced that last word, “doah.” I would shiver in anticipation of the sheriff’s arrival.

Tonight I realized that I used to think the worst thing that could happen was that evil would come to the door. It would want to come in and I would need to stand fast against its entry. I know now that the movie When a Stranger Calls is infinitely more frightening. In it, the police call the babysitter and tell her that the terrifying calls she has received all evening are coming from inside the home. That has to be worse, right? Once evil has invaded, there is no place to run and no place to hide.

There is nothing on TV tonight other than the resolution of the Boston Marathon bombing incident. In less than a week we have watched innocent citizens celebrating a civic exercise that marries the finest elements of parade, fitness, and pride get shredded by makeshift bombs assembled in pressure cookers, packed in ubiquitous backpacks. In an instant, mundane household items became sinister. Soon they will be emblems of terror like the trench coats worn at Columbine. We will find ourselves studying with swiftly dispelled suspicion the appendages we strap onto the backs of children before sending them off to school and the utensils we employ to put dinner on the table when they come home safely.

Tonight we “know” the two brothers who plotted to disrupt the event. They killed four people, including a young police officer gunned down last night. They maimed more than 150 others. They wounded countless bystanders, first responders, healers, and witnesses who are deeply troubled by the prospect of domestic terrorism. Some of this week’s victims lost family or friends, limbs, good health, freedom of movement, peace of mind, and more. Those two brothers were their parents’ “angels” and our neighbors until they became our nightmares.

As our nation cheers a bipartisan bill that could help us resolve our nation’s immigration issues, we learn that the evil came from inside our borders. Two brothers who we sheltered when they left the battle-torn nation of Chechnya attacked us. It took locking our doors and sheltering inside to finally uncover the last of the brothers. He sought shelter in someone else’s stored boat and was finally located and captured. Capture helps, but it does not heal us.

As soon as we drew a deep breath of relief the newscasters threw us back into every dreadful memory so that none could be suppressed and each could be explored again. New images of families facing funerals and painful “recoveries” are carrying us through to the late news hour. Grieving families are interviewed in front of cameras so that we can “share” their losses and “appreciate” them more fully.

The local news tonight was all about April floods in Chicago. People shored up their homes with sandbags. They operated sump pumps. They dragged treasures to higher ground. In some cases they lost their battle with the elements and fled the safety of their own homes to save their lives. The water invaded everything in its path. Many flood victims have lost things they valued greatly or just took for granted, including peace of mind.

At one point this evening I turned the volume of my TV way down and fired up the computer so that I could catch up with the Freshly Pressed blogs at WordPress.com. I read the chemotherapy and cancer blog postings of the day and checked out the blogs of people who visited my blog and left a posting. It was the same message. People wrote of the fear that cancer had come to their doors. They wrote of their reactions to the news that it had invaded in stages. They had excised some or “all” of it–in some cases before its presence could even be verified. They wrote of surgeries, poisonings, and radiations.

They also spoke of their terror and grief. They worried about their families. They measured the collateral damage of a cancer diagnosis on lives from the epicenter of the disease to its furthest societal victims.

In the midst and in the wake of these treatments the authors of many of my favorite blogs spoke of the fear that lingers even after a declaration of NED (no evidence of disease) or remission. I share their concern. A number of the postings I read tonight discuss the fact that everyone has cancer cells inside but most of us have too few of those cells to measure or worry over.

Some of us are like the town folk in that Southern TV town. We can barricade the doors. Some of us are like the flood victims. We can shore up the walls. We can stand guard with mops and pumps. Some of us are like the babysitter. The thing we fear most invades and we fear it will come for us again. Some of us will react to cancer the way others will react to the news that our domestic terrorists were once welcomed immigrants. We will give up the things that once comforted us: sugar, dairy, fat, meat, tap water, leisure, even air. Once you know the chinks in your fortress and the terror of having found what frightens you most has crawled inside, you get a little crazy about rooting it out. The sad thing is that once you have found what scares you most has burrowed inside you know that you can never be safe.

The message of hope in the movies, the national tragedies, and the personal challenges is that we do go on. We may study strangers’ faces on the street in search of strangeness. We may even go out and buy a gun (even though domestic terrorists were located and captured in four days without a single citizen’s resort to a handgun). We may startle when someone is at the door. We may look over our own shoulders at the creak of a floor board. We may study our river views with jaded gazes. We may regard a former comfort food with suspicion. But we will grow tired of our super-vigilance.

At the end of the day we will slide between sheets and rest our cheeks on cool pillowcases. Whether we toss and turn, shed tears, or open our mouths wide in soundless horror, we will eventually drift off to sleep. Dreams may offer no relief. Sleep may ease no pains. But we open our eyes at last to a new day. And, in time, all of us hope that the someone at the door brings us help, reassurance, answers, company, or a tuna casserole. It is this resilience that sustains us in times of tragedy. It is this resilience that makes us get up and open the door.

The Process of Healing

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After twenty-five sessions of external radiation aimed at my hips during November and December of 2011, I hoped there were no traces of uterine cancer remaining in the vicinity. I had a number of burns in addition to those pictured above. Some of them were on sensitive flesh that I did not photograph. All of the burns have healed.

At the time, I was under the impression that any burns from radiation would be more like a bad sunburn. I expected to have a band of red skin that hurt but did not weep or bleed. I did not imagine that some of these burns would come in regular contact with fiercely acidic post-chemotherapy diarrhea multiple times per hour.

Suffice it to say that informed consent may be obtained without critical information when your radiotherapist professionals use hand signals to describe what will happen to you instead of words.

I am not complaining about my health professionals today. My point is that cancer treatment can be as ugly and painful as some cancers. I got through it. I am healing on the outside and on the inside. I hope that this process will continue and that I can go on without a return of the cancer that has turned my life upside down since October of 2011.

Life has been turned upside down. I have been through surgery, chemotherapy, radiation, infection, termination from one of my jobs, two hospitalizations, months of incurring medical bills for which I did not have medical insurance, applications for charity, chronic pain from side-effects of treatment, many challenges, blah, blah, blah. I am always aware of the fact that my experience with cancer was mild compared with the experiences of many of the people I met along the way. I feel very lucky because I am healing.

This week I asked the DePaul investigator looking into the circumstances of my termination in October 2011 for a progress report. She told me (as a preliminary announcement of her conclusions) that she has concluded that portion of her work and found no violation of university policies. This is the email that I received October 11, 2011, after I said I was already able to return to work:

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

After receiving this email, I was told by the author of the email and the dean of the law school that I would be paid the remainder of my contract fee. I was paid that amount in August of 2012 after I made repeated calls to people.

I am surprised by this preliminary conclusion from the university’s investigator. Apparently, disability law, like cancer treatment, means different things to different people. It is not enough to read the papers and listen carefully to what is said.

I will be interested to hear the results of the investigation of my claim that I have also been subjected to retaliation for my complaint about the foregoing. No preliminary conclusions were shared about that aspect of my case.

This weekend I was flipping channels on the TV and came across the sermon of TV evangelist Joel Osteen. He was saying, with due respect, “Get over it.” He directed his message to people who were bitter about wrongs done to them. His message was directed to persons who hold grudges against a parent who did not give nurturing to a child. He spoke to people who have been wronged by a spouse, another family member, a neighbor, a stranger, or a friend.

I listened for a little while and I now believe that there was a message for me in what I heard. I did not want to accept that on Sunday. I ended up turning the TV off.

Today I am thinking that life is not easy and situations sometimes are not fair. But, if I can handle everything else that has happened in the last nineteen months, then I can handle the disappointment of learning that one of my employers thinks it is okay for its managers to act this way.

I will admit that this is painful. Right now I have pain radiating from my chest to my fingertips. My throat is tight and sore from holding inside my disappointment. It cannot be as terrible as cancer or cancer treatment. The wounds will heal. The burns on my skin healed. The burns inside my bowel and bladder appear to have healed. I will heal from this injury, too. Sometimes life hands us a bitter pill. That does not have to make us bitter, too.

Crying Inside

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Some people cry in their beds. Some people cry in the shower. Some people cry in their cars. Some people do not cry at all. This evening I took a drive to Barnes & Noble. I wanted to buy a book for Rachel, my greatniece. I bought a copy of Ten Good and Bad Things about My Life (So Far) by Ann M. Martin. I bought the book because the description included this statement:

Ann Martin takes this appealing character into new adventures through which young readers will see that good or bad, life is what happens when you’re making other plans.

That’s a serious topic, isn’t it? I have spent 18 months learning precisely that lesson since a doctor diagnosed me as having uterine cancer.

While I waited to pay for the book the woman behind me asked if I would mind telling her what I was reading. I showed her the cover. She did a double-take. I was sure she was thinking that I looked a little old for the material. She took the book from me and flipped through it swiftly.

“It’s a gift,” I said by way of explanation.

She handed the book back to me. “You don’t have any kids, do you?”

I blinked. “No, I don’t.”

She smiled. “Kids today don’t read books. They have tablets. They look at pictures. This book has what–maybe five or six drawings.” She showed me her purchases. She had two games. She waved toward the back of the store. “Haven’t you noticed? This place has become a toy store. You should get the kid a toy.”

I  smiled. I like books. I especially like books without pictures. I love books that carry positive messages. I want Rachel to grow up feeling resilient. Life can be tough. I hope Rachel will prove to be even tougher.

A few minutes later I was driving home with my purchase. An older woman in an out-of-style raincoat was walking between the cars at a major intersection. Her cardboard sign said her family had been evicted and she needed help. It was about 56 degrees outside and a light rain was falling. The woman was my age. She wore a bright red wig that was looking wet and bedraggled. I rolled down my window and reached for my purse.

When she walked up alongside my car I saw that she had no eyebrows of her own and I realized that I might be speaking with a fellow cancer survivor. I opened my wallet and handed over $15. It wasn’t enough to make a big difference, but it was what I had on me at the time.

“Thank you for helping me,” the woman spoke softly. “Happy Easter.”

That’s when I thought of the book. “Do you have any children?” I asked.

The woman looked at me like maybe I was not a nice person after all. She stepped back from my car. “Yes.”

“Do you have a daughter?” I asked.

She hesitated. “Why do you want to know?” she asked.

I handed her the book. “I think it’s about making the best of bad situations,” I said.

She looked at the cover and then tucked it back into the bag. “Thank you.” Her face was wet. It might have been the rain. It might have been tears. I don’t know for sure. The light changed and I turned right.

I went back to the store and bought an extra copy of the same book for my niece. The clerk looked at me and looked at the book. “I thought you already bought this.”

“I did.”

“Did you lose it?” the clerk asked.

“No. I gave it to a stranger and now I need another copy for someone else.”

The clerk laughed. I think she thought I was nuts.

I drove through the ATM lane at my bank on my way home and took out some extra money, but, when I drove past the intersection where I last saw her, the woman with the red wig was gone.

As I proceeded home I said a silent prayer for all of the people who tonight are having bad experiences when they had something better planned.

Deep Sleep

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Friday was another day of very low level pain. I slept from seven in the evening until eleven without waking once. Then I sat up and did some reading and work until nearly two in the morning. I went back to sleep and did not wake for another four hours. That never happens to me. I often wake every hour.

My mom claims that the staff at St. Ann’s Hospital, where my sister and I were born, used to wake the babies for their first feeding at a very early hour. We have always been early to rise. Our brother Danny was born at Holy Family Hospital. They woke the babies later at that hospital, and he still enjoys sleeping late if he ever gets the chance.

When I was a child I slept about five hours a night. On Christmas Day it was always the sight of me seated before the tree staring at the lights and presents that greeted everyone else. One year my mom and dad tied all of the doors shut to keep me from reaching the den. They found me seated in the hall on a cold floor peering through the slats of the louvered doors when they woke.

In 1980 I started working the night shift at a hotel. I taught classes in the morning at a local college. I helped to coach a college debate team in the early afternoon. I slept from three in the afternoon until it was time to get up and get ready for work again. On many Friday mornings I finished work at the hotel and climbed into a van and traveled to debate tournaments. I did not sleep at all until the day was done. On Sunday nights I returned to work at the hotel and kept going.

I read the book entitled Sleep Less, Live More by Everett Mattlin and systematically reduced my sleep time to three hours. For most of my adult life I slept no longer than that.

Even when I wanted to sleep more I found it difficult to do so. Studies now show that this is terrible for a person’s health. The studies may be right. I find myself increasingly interested in reading studies and decreasingly influenced by them. They tend to contradict each other. Something is good for me. Something is bad for me. These inconsistencies would trouble me more if I thought inconsistency in life could be resolved. I agree with Aldous Huxley that life is inconsistent.

I was awake, other than when I was drugged, for the entire week of my hospital stay in October of 2011. I was awake for several days straight during my hospital stay in December of the same year. I have slept more than seven hours during a single day on numerous occasions since I finished chemotherapy and radiation treatment in that same month of 2011. But I do not go to sleep and stay that way for long. I wake up to roll over. I get that pins and needles feeling in my hands sometimes and wake from a deep sleep. I wake to go to the bathroom. In the last 18 months I have awakened often, sometimes every ten minutes.

I rarely have dreams that I remember when I am awake. I often wondered if my short sleep pattern meant that I did not reach REM sleep–the sleep that usually delivers dreams. I have read studies that say that this is nonsensical. The patterns of sleep are, like death, consistent.

Since my diagnosis and treatment I dream much more and the dream is nearly always the same. I am president of the United States and my son, a veteran of a foreign war, is missing because the government of which I am the chief executive has exposed my son to the werewolf virus. He has run off to figure out how to deal with his new reality. When I wake from this dream I am speaking with the Secret Service agent in charge of my missing son’s security detail. I ask him, “Do you know where my son is?” He tells me he does not and I think to myself, “Liar.”

I already have written about this dream and what it might mean.

Last night I had a different dream. It seems to have sprung from what I did yesterday afternoon. I drove out to the cemetery where my dad and his parents are interred. The place is a disgusting carpet of goose turds. Those devils of earth and sky use the cemetery as a gigantic toilet. In the wake of a cold and snowy winter, most of their droppings are bleached beige and dried down to the fiber. They disintegrate beneath my footfalls. Visiting the cemetery is far more treacherous in spring, summer, and fall when the droppings are fresh. I can barely negotiate my way to my dad’s gravesite without stepping on the stuff.

I took some paper towels with me so that I could clean off his headstone and those of each of my grandparents. Those stones are also liberally decorated with this stuff of foul fowls. As I walked past a woman my mother’s age who was decorating her deceased husband’s grave with Easter eggs (the real thing, hand-dyed and decorated with a piece of ribbon) on little spikes, I noticed a bird sitting on my dad’s headstone.

My mom thinks my dad’s spirit sometimes visits her in the form of a bird. When I am at her home I sometimes hear the thud of a bird hitting a pane of a window or the side of the structure. My mom loves birds. She always knows the caw of a blue jay and smiles at the sight of a cardinal. This was a rather large bird, but not big enough to be a duck or a goose. It was not small enough to be a sparrow or a robin.

It was quiet. The only noise I heard was the sound of my tinnitus. My ears “ring” all of the time since chemotherapy. The bird must have heard me, but he did not move from the headstone as I approached. I decided to greet my disembodied dad. “Hi, Dad,” I said softly.

The bird turned to look at me as I drew within a few feet of it. Then it started walking away. He stepped over to the headstone of George Prewitt, one of my grandparents’ good friends. George is buried next to my dad. Then he turned and looked at me. I stepped onto my dad’s grave and bent to clean the stone of its nasty “decorations.” The bird was close enough for me to touch and still watching me.

I usually speak to my dad when I visit. I told him the good news of my relief from the pain of radiation cystitis. I told him that my mom was visiting with my sister Kathy and asked him to pray for the entire family. I said some prayers for him, for his parents, for my mom’s parents, and for the rest of our family.

The bird turned away from me and walked deliberately to the next grave. It belongs to Flo Prewitt. The bird kept on walking to the grave of Agnes Luckey, Flo’s mom. Then the bird strolled up onto the grave of my grandma. He settled again at my grandpa’s headstone.

I went on with my news report (as if I really think my loved ones hang out in a cemetery). When my dad’s headstone was “clean,” I approached my grandpa’s grave and the bird turned to look at me once more before flying off and away.

When I had finished my greetings I walked back toward my car. I passed the now unattended grave the other visitor had decorated. I realized that the grave beside it already bore the woman’s name and date of birth. That must be interesting. I plan to someday be interred above my grandfather. We were born on the same day (fifty-five years apart) and were very close. My aunt plans to be interred above her mom. My mom plans to be interred above my dad. Someday there will be the six of us and the three members of Flo’s family lying in rest there. I don’t ever focus on that fact when I visit because, unlike the woman whose now empty grave I passed, my name is not already carved in a stone.

As I looked up I saw the bird again–at least I think it was the same bird–standing right beside my car. It was still there when I slowly drove away from my parking space.

Last night I slept without waking once during the last four hours of my night. When I woke I had been dreaming. In my dream I was back in the cemetery. I was speaking to my dad and watching the bird. In my dream, the bird answered. The last thing I recall from my dream was that the bird said, “This place is not for you. Dream bigger dreams.”

I think I really am getting better.

Pain Relief

Wednesday, February 27th was the first day since December 2011 that I passed the entire day without bladder pain. That’s right, my previous record of painlessness was about eight hours and it was in spring of 2012. The pain-free experience ended and the pain has already returned, but the experience has given me cause to celebrate. There is no treatment that has been offered at Stroger Hospital that would cure radiation cystitis. My friend Mary discovered that time spent in a hyperbaric chamber could help, but there is no such chamber where I receive treatments, my doctors are skeptical of the utility of such treatments, and I have not sought treatment at a nearby clinic that sells 1 hour stints in its hyperbaric chamber to people wishing to be more fully oxygenated.

I have been taking a drug that reduces spasming of my bladder. It has successfully managed the other side-effect of cystitis–incontinence. Of course, the medication has its side-effects. I continue to be covered with pinpoint-sized red dots on my lower extremities. That has been happening since the start of the year. The dermatologists at the hospital are not certain whether this is a side-effect of the medication I take or is the rest of a new, nuisance-level immune disorder. I already had decided to put up with the splotches of red rather than discontinue taking the drug that might be causing the condition.

There are many things in life that prove to be acceptable when the alternative is worse. For me, the pain I have been experiencing–like the red spots sprinkled over my legs–has been part of the price I pay for wanting to do all I can to prevent the return of cancer.

The pain has been wearing at me. Some days it has reduced me to tears. Some days it has continued for hours rather than ending when I have emptied my bladder. Every day it has been something I anticipated, feared, or tolerated. To have had an entire day without it was most excellent.

If you know what it is like to have pain (physical or emotional) every day then I pray this morning that you also will have such a day. Already it is giving me renewed hope. Hope is more intoxicating even than depression. It is like the first pings of popcorn in a covered pan. It is like the pop of a cork from a bottle of something bubbly. It is like the warmth of the sun when it comes out from behind a cloud on an overcast day. It is like the smile of a friend you have not seen in a long time. It is like a memory of a happy time that pops into your mind in the moment before you wake up. It is so wonderful that you question whether it happened at all because it is tough (but not impossible) to sustain the feeling when pain returns. It makes up for quite a bit to have such an experience.

I am using that sense of optimism to hope and pray that this will be the first of many pain-free days for me and for all of you have pondered the opening words of Paul Simon and Art Garfunkel’s The Sound of Silence: “Hello, darkness my old friend. I’ve come to talk with you again.” It may build character to face pain without rancor, but it is a far more wonderful thing to not face it at all.

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