Not Down Or Out

It could be worse. I might not be laughing.

Month: September, 2012

Looking Over My Shoulder

This week makes it one year since I learned that I had uterine cancer. A year is a long time. I need four more years without hearing that I have cancer to feel I have beat the odds. I know that five years without a return of cancer is one achievement I cannot reach by study or practice. Cancer is a formidable foe that no one fully understands. It may come back. It may come in some other form. Every time I look over my shoulder I see cancer in the same way as I see cars using my Kia Soul’s mirrors. Some objects are closer than they appear and some objects are in my blindspot. I don’t see them at all until it is too late.

I still feel lucky. When I say lucky I mean that I often experience a giddy effervescence that is somewhere between selzer and holy water because I am still here. There is so much lightness inside of me after having survived surgery, radiation, and chemotherapy. Based on recent blood tests and my last CAT scan, there is now no cancer in any of the places where uterine cancer would spread. That is fantastic news! There have been times in the last year when I did not know whether cancer remained following surgery. My pathology test after surgery said the cancer had invaded more than 50% of the wall of the uterus. It had spread to one fallopian tube. It had “involved” the cervix. My surgeon did not remove my lymph nodes when he performed my hysterectomy. The cancer could have reached those nodes. That meant it also was possible that the cancer had reached out to the nearby blood, bowel, or bladder. That is why I underwent five weeks of radiation and six weeks of chemotherapy. I wanted to make sure that the cancer had not spread to any other places.

The last year has not been easy for me. I had to quit radiation after five weeks because my bladder could not take it any longer. That’s a far worse burn than any other I have ever suffered. I remember when I thought a sunburn was bad. I remember whining after hot pizza blistered the roof of my mouth. I remember the time in college when I backed out of the shower into an uninsulated steam pipe and had third degree burns on my behind. I thought I knew about pain. Sometimes I have to read my old blogs or thumb through my diaries to recall just how difficult the last year was. Pain came in a form that my memory finds hard to recall. I can forget how terrified I was when I could not urinate at all because blood clots blocked my urethra. I pushed hard, thinking it was like getting a chunk of strawberry too big to pass through a straw in a milkshake. It was much worse than that. I felt like I might explode. At the same time, I felt so toxic from a bladder infection that I cried out to God in fear for hours at a time when every fluid that came from me felt like liquid fire. I have not forgotten the days and nights when my sister sat beside me stroking my dissolving hair with gentle fingers while she prayed with me for the pain to stop, but I can lose touch with the pain that prompted such vigilant caring. Some part of me is so eager to put it all behind me that it keeps pushing the memories away. When I do remember how much pain I withstood this past year, I still feel lucky.

Unlike many of the cancer patients I have met this past year, my treatment ended. I am healing. Even if it takes a lifetime to heal what treatment has burned, I am getting better.

I do not think I am doing as well as I am because I was saved by God. I have walked beside too many others on this road to believe I deserved to come out as well as I have or that more people prayed more effectively for me than did for them. The truth is that I have met many people more deserving of good health than I and some have not fared as well as I have in treatment. No one deserves cancer. No one. And I know there are people who think we deserve to suffer. They ask about risk factors like their existence makes the cancer warranted rather than merely more likely. Cancer isn’t something you can prevent with clean living. All you can do is try to influence chance. You cannot control it.

Nevertheless, I feel lucky in the sense that I feel blessed. My faith and the faith of others helped me get through what I endured. This was a challenge that I survived because others helped me keep going. When I was most frightened I prayed to God for the strength to make it through the seconds, minutes, hours, days, weeks, and months. And I made it through those trials. My mom, sister, and brother were there for me. They made sacrifices to support me during surgery and treatment. The families of my sister and brother were there for me. When I worked those really long Saturdays out in Schaumburg they prayed for me to get through the day. And I did. I am grateful to the people who got me through treatment and recovery. Barb has been a wonderful friend. She has been there for the darkest of days, including the night I was first hospitalized, the days leading up to and following surgery, the day I met my oncologist to learn my chances for survival, two of my chemo/radiation days, and so many days in between and after. She even opened all the hospital bills for me when the idea of opening them paralyzed me. She took me to that horrid exploration of my bladder and listened to all my fears.

I was lucky to have many family and friends’ support. My mom took me to the hospital right before Christmas. She was way out of her element but she did all she could. She lit candles in church and prayed for hours on end for my recovery. My sister Kathy spent an entire month with me, driving me to classes, making meals, and helping me to keep going after I got out of the hospital that second time. My brother Danny came twice from Texas to take me to chemo/radiation combo days at the hospital. Let’s not forget how my sister-in-law Lisa saved my hair with advice that I take selenium prior to chemotherapy! My niece Maureen and her fiance Justin came out from Maryland to take me for another such marathon. They will marry on the anniversary of my surgery, giving me a positive memory to associate with that day. Dominique took me to another chemo/radiation session. She was the only person in town who could visit me during that horrible week I spent in the hospital after my treatment ended. She has offered so much in the way of alternative treatments, too. Mary paid for me to have my apartment cleaned and paid for a month of my long distance phone bill. She called me every week, sometimes several times a week, during the toughest months of treatment. Roberta sent me cards every week, sometimes every day. She packed up a whole package of surprises for the holidays. She came out to visit. Susie called so many nights to see how I was doing. I treasure the memory of those calls.  Michael and Alice sent flowers and a care package of soothing music. Alice offered so much good advice and comfort. Aunt Joan, Pam, Courtney, and Gail called or wrote to cheer me on. Aunt Arlene, who is being treated for metastasized breast cancer, prayed for me. Paul called to see how I was managing. His mom and dad, Gladys and Nick, prayed for me and my mom. Kim prayed and volunteered to come out to help me. Maggie, whose health was failing, prayed for me and called to see how I was holding up. Sue came to visit and cheer me up. Cindy sent me cards with wishes for health. Diane and Steve stayed connected all the time. Kathleen and her brother John sent messages of hope. Rick and his wife prayed. Ivanka visited Medjugorje and made a petition for me. So many of my friends and colleagues sent their wishes for my return to good health.

My students were so kind. Some anonymous students sent me a “robot” to clean my floors. My LARC III class sent me a lovely card. Millie sent me flowers. Joyce sent me a care package of treats and movies and surprises. Tracey brought me her homemade baked goods. I received countless notes and emails with good wishes for months. I know I was included on the lists of many prayer groups.

I am grateful also for my doctors and nurses. My surgery may not have answered all of my questions about my prognosis, but I recovered from it swiftly. Dr. H and her team have been excellent. I have encountered some wonderful nurses in the chemotherapy infusion unit. Cook County’s CareLink program has relieved me of so many worries about how to pay my medical bills.

What can I say about the many cancer patients and survivors I have met this past year? The patients at Stroger Hospital have shared my path through treatment. They are gallant, good-natured, generous, and caring. This week I went to the hospital to pick up a prescription and drop off another. It took hours to accomplish the process and I still have to return this coming week to pick up the second prescription, but it has become a place where I have grown stronger. I thought I saw Country Joe walking toward me down a hallway. It was not him, but I wished I could know whether he and some of my other cancer buddies were doing well. You cannot help but root for the people you meet in this environment. I hope everyone is hanging in there.

I read the blogs of several women who have been treated for breast cancer. They have touched my heart with their advice and their support. I started with Yvonne’s blog Time to Consider the Lilies. She writes prose and poetry that touches my heart with its honesty. Through her blog I have come to read many others.  I now read Lori’s blog Regrounding and “Treyccc”‘s My Daddy is Dying on WordPress. Some of the people engaged in the battle against cancer know more about living than anyone else I have met.

I have learned so much from others’ experiences. You might think it would be depressing to read about the cancer experiences of others, but it is inspiring. When I first learned of my own diagnosis I thought the toughest thing I would have to do was to face the prospect of my death. It turns out that the toughest thing you have to do is face your life. You learn what matters to you. I would trade money and belongings for time with people I love. I have always known that, but not in the way I now know it. The “trade-off” is no longer a hypothetical. It is an imperative.

It is no longer enough to see a friend or hear his voice or see her handwriting on an envelope. I want to talk and listen to discussion of what matters to people who matter to me. Is someone I care about moved by the way the sun slanted through her windows one afternoon? Did she lie on the couch and let the sun slide up her body as it set? Did it make her recall a time long ago when we sat on the beach and wondered whether to barbecue chicken for dinner?  What was she thinking about when she read the lines in a favorite book? Did she cry like I did at the end of the story? What was he thinking when he sat down to write a eulogy for his father? Why does he wish his wife would put her cat up for adoption when his commitment to his dog is for the animal’s life? What carelessly spoken words of a decade past still play in her ears and make her worry that she is not attractive? Why does he think he has never been in a love that lasted? When you start to measure time in terms of how much might be left instead of how long you have been here, then you start to see time as something else. Instead of counting seconds, you learn who you can count on in times of trouble. You count blessings like they matter more to what your future will be like than the balance in your IRA. You count the cost of medical care in terms of meaningful existence rather than breaths because you see that medicine can waste you as well as heal you. You learn that what often scares you the most is not dying but giving up the battle for life. Once the battle is abandoned, few seem to live much longer. They pass on swiftly. It is the fighting that makes you feel more alive.

As I look over my shoulder I have regrets, but this is not the time to count them. This is a time to celebrate and make merry. As I look over my shoulder, I see that I am still moving forward. And, for as long as I can keep on doing that, I am lucky. Lucky to be alive.

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

Joyce is 100% Cancer Free

Joyce is 100% cancer free. Her lymph nodes are normal and she has no lymphedema. It may not be true yet, but I say it many times a day so that it will soon be true. And I keep writing my affirmations in my blog so that others will read them and add their voices to mine and help make it so.

I met Joyce while we waited for our CAT scans at the county hospital. She had just been told that she had breast cancer. I was there to determine if there was any evidence that uterine cancer had returned. She was feeling like a little kid who has turned and turned in a circle until she has become so dizzy she could fall over. She tells me that she is “intuitive” and sometimes knows things without being told them. Her senses told her that she was in the presence of someone with the spirit of a nun. Based on this impression, she introduced herself to me.

I am flattered by the comparison. I aspire to be so virtuous as to dedicate my life to the service of God, but I am not worthy to claim any likeness to the sisters. I believe. I have faith in what I cannot prove. But I am grounded in my own concerns. My first thought on waking is not Him. It is usually that same sentence that has haunted me for months now. I am the President of the United States and I ask my Secret Service special agent in charge if he knows where my son is. I am fairly confident that nuns do not have repetitive dreams in which they suspect that their nonexistent sons are werewolves on the run. Oh yes, I’m still waking from that dream a hundred times each month. And I am not the President of the United States. I am not a mother. I do not know anyone who claims to be a werewolf.

Living like a nun, in the sense of being chaste? Okay, I’m doing that, but not for lack of thinking about life before divorce (something it would help me to forget) or after annulment (something that has not happened).

In the past year I have prayed quite a bit. I do think of Him many nights before I go to sleep. But my prayer is a talisman against a new fear: “Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.” I have said many prayers in the last year for strength in the face of terrifying pain. Tears fill my eyes as I recall when my bladder was trying to expel blood clots following radiation and chemotherapy. I have never before known a pain so awful that I might gnaw off a limb to end it. I prayed nonstop for hours with my voice rising to a crescendo of emotion. But those were prayers for me. I pray quite a bit for others now because so many prayed for me. But I am still in the “red” when it comes to giving back to the many who added me to their prayer groups’ lists this past year.

I am grateful to God for all I have. And I have come to realize that, even though my friends will joke that I should be on a show about hoarders, I no longer love my things like I once did. No, not even my two matched German mugs found in separate antique stores miles and years apart. One is pink and one is blue. I imagine they were once a pair and that I have reunited them in my cupboard. They each bear the image of a fat man who says, “I am not greedy but I like alot.” No, not even the little calling card tray near my front door that says, “At home Sunday 4 to 8. Hoping you will remain the same . . . .” But I am a long way from a vow of poverty even if I shudder when I look at the medical bills that slip through the safety net that my Republican friends wish so badly that they could clip along with the tax rate.

Anyway . . . I am no nun. But I am flattered that my spirit reveals itself to be better than my human existence because the latter is a work in progress.

I gave Joyce my card when she asked for my phone number. She calls me to talk about her experiences in treatment for breast cancer. I call her right after her every third Wednesday chemotherapy sessions and again three days later on Saturday night because that’s the day when I found myself feeling most exhausted.

Joyce’s doctors are hoping that chemotherapy will shrink the size of her tumor before they remove it. She first became aware of her condition because her arm swelled with lymphedema to a point that she could no longer ignore. She told me that she had no intention of claiming cancer as “hers” and was fighting it with her own daily affirmations of good health, which started my doing the same.

We spoke about a month ago when she heard from her doctors that a more recent CAT scan showed no sign of the tumor that once was there. She had just had her second CAT scan. It appeared to be a bona fide miracle. The doctors did not have an explanation for its absence from their results. They decided that it was an error and will be testing her again very shortly. But I find myself wondering whether we can still make it so. If everyone says it each time he or she reads this blog, and maybe says it a few more times for good measure, well, maybe the “prayerful” person hiding within each of our human guises will accomplish something wondrous for a pediatric nurse who has helped so many others in their time of greatest need. One does not have to be a nun, a catholic, or even a believer to make a miracle. One need only offer a few words to the universe as a little experiment in kindness.

Who or what are you worried about? Feel free to post a positive affirmation of your own and everyone who views them can add a voice to your good intentions and between us maybe we can cure or ease or resolve or reassure or help each other.

I am thinking today that Joyce is 100% cancer free, has normal lymph nodes and no more lymphedema. Peggy has no expiration date. Arlene will live a long life. My family and friends are my “secret” power. Prayer is the best medicine. Cheryl is winning her war against cancer. All of us find strength in knowledge and faith. All of you will hear good news about a loved one soon.


Anne Will Know Peace

Peggy has no expiration date. Anne will know peace at the end of her days. Arlene will live a long life. Joyce is 100% cancer free, her lymph nodes are fine and she has no lymphedema. My family and friends are my “secret” power. Prayer is the best medicine. Cheryl is winning her war against cancer. All of us find strength in knowledge and faith.

A few weeks ago I started reciting daily affirmations. Joyce, the woman I met at my last CAT scan, started me on this path with her lesson in the power of positive thinking. One of my affirmations was that Anne will know peace at the end of her days. Anne died this week of untreated breast cancer. Anne was in her nineties. She was diagnosed very late in life and decided not to treat her cancer because she already was confined to her home and lacked the strength to undergo treatment even if it was advisable. She lived in a home that she once shared with two of her beloved sisters. Anne, Marie, and Rosalie decided to live together after Anne and Marie lost their husbands. Rosalie never married. She was a “career girl.” She sold ladies’ fashions at J.C. Penney until she retired. Thereafter, Rosalie has taken care of the other two sisters until their deaths. None of the sisters had living children to care for them.

The sisters were proud of their Polish heritage. They were born and raised in a time when girls were raised to keep house. They kept house. When I was a girl, my mom used to tell us how the sisters cleaned their house from top to bottom–inside and out. I know all about inside cleaning. When I wanted to go to D.C. for a summer of college classes as a junior in high school, my parents agreed to pay for it if I washed all the walls in our house, dusted every book on the shelves, and washed every floor. It was a painful price to be paid and I paid it–sort of. I recall washing the walls in the den and kitchen, but I’m vague on the details of cleaning bedrooms and bathrooms. I am fairly certain my brother Danny did not allow me into the inner sanctum that was his room. We were eight years apart and arch enemies in those days.

Over at the sisters’ home, they scrubbed the outside of the house, too. They had buckets of soapy water and climbed ladders to scrub the home’s gutters and siding with giant sponges and they were older than I am now and thought nothing of it. I have a robot device that dusts beneath my bed and mops my hallway and kitchen floors. I have two air cleaners that suck dust from the air so that I can rinse the dust off every couple of weeks. This leaves me lots of time for doing the many things I now think are more important than house cleaning.

In 1994, my mom and I were invited to dinner at the sisters’ home. Rosalie and my mom were excited that one of their retired J.C. Penney coworkers and that woman’s husband had come to town for a short visit. The sisters spent two days cooking dinner for seven people. There were bowls and platters of food all over the dining room table. Everything was homemade and smelled delicious. Even their dog had a feast. Marie had baked a chicken in butter for their dog and Rosalie had bought a pound of Fannie May fudge because the dog ate the finest chocolate. I recall my own shock at the news that the dog would be eating chocolate. It is a known toxin and no amount of it is considered safe for dogs. The sisters scoffed at the news and gave the dog a piece of the confection while we ate our dessert. He lived to a ripe old age.

When he did die, he was sleeping on the edge of Rosalie’s bed. He had grown so old that she had to carry him outdoors to “do his business.” She still baked him chicken in butter. He still ate a piece of Fannie May fudge now and then as a special treat. She refused to move him from the bed in case he might still be alive and in need of his rest. The vet agreed to make a house call. He placed a mirror in front of the dog’s nose so Rosalie could see that there was no sign of moist respiration. He listened with a stethoscope and found no faint beating of the heart. Rosalie at last agreed that the dog could be buried in the backyard, beneath a favored tree.

My mom let me know that Rosalie was unable to sleep after her dog died. She feared he might still have been alive when her nephew laid him down in the backyard. Her fears woke her all of the time. She told my mom that the dog had never grown stiff after the vet’s visit. I explained that rigor mortis is a temporary condition. Its onset can be affected by numerous factors. Its disappearance can be as well. This proved to be a tremendous relief for Rosalie. Still, she hated to think that she might have let her dog down at the end. She confessed to my mom that she continued to worry that she should have let the dog go on sleeping awhile longer before letting him go.

I would have expected these plucky sisters to live on forever, but there came a time when nieces and nephews (children of the sisters’ two brothers) had to come over to help keep the household going. Nevertheless, the sisters kept going a long time. When we switched from analog to digital TV my mom called me and informed me that we were needed to visit the sisters in their home and convert their TVs. There were only two sisters in 2009. Anne sat in a big recliner with an oxygen tube in her nose. She was all dressed up in what my grandma would have called a house dress. Her hair was combed. She was attended by Rosalie, who could no longer drive and had recently broken her hip and needed a walker to get around the house.

Someone had explained to the sisters that they could get cable TV in their home, which would provide the necessary adaptation for them to receive local TV in their home after the conversion to digital TV, but the sisters were shocked that anyone would pay for TV. Rosalie could allow for the fact that some might pay to see the Wheel of Fortune spin, but Anne, who claimed she “liked TV as much as the next person” drew the line at paying for TV when it was already so filled with commercials. I knew the sisters would never pay for a converter box. I had bought two at Radio Shack and tossed a couple of sets of “bunny ears”-style antennae in my car for good measure. I took everything out of the boxes before we went inside because the sisters would insist on paying me if they knew I spent money, even if they would not have thought the matter worth the expense.

The two TVs in the home were decades old. Neither one had a connection for cable. I had anticipated this and had the right Y-adapters and some cable to make the necessary connections. Both sisters watched me carefully while I added new “contraptions” to their TVs. Even with the new antennae, reception was a bit “dodgy.” Rosalie explained to me that it was more important for the den TV to get a good picture of channel 7 (WLS) because Anne really did look forward to her Wheel of Fortune, and she rarely got up from the recliner once Rosalie got her settled there for the day. Rosalie whispered that she needed channel 9 (WGN) in the kitchen because she liked to watch the Cubs play baseball in the summer and there were times when the sisters did not agree on what to watch.

I expected to find dust piling up behind those TVs. Neither one of those women was steady on her feet. Anne was already frail in health, although built for surviving a long haul. Rosalie was complaining of blueness in her hands and feet, a condition that would grow worse and never be addressed because she always took care of the others and rarely acknowledged needing help for herself.

There was no dust to be found. When the women could no longer do these tasks for themselves, then others stepped in. Like me, they probably brought tools and tried to ease the sisters’ way into more modern times, but no one ever insisted that they could be more easily cared for in a retirement home. No one ever insisted that they pay for TV so they could pay for the pleasure of having 200 stations “with not a darn thing worth watching” except for Wheel of Fortune and the Cubs’ games in the summer, which were free, doncha know.

Anne was diagnosed with breast cancer shortly after that. She declined treatment. Her life had become even more focused upon her chair in front of the TV by then. Rosalie never fully recovered from her fractured hip and has lost most feeling in her hands and feet. She cannot drive her car any longer. But she is spry of mind and still watching free TV.

I was not able to attend the wake or funeral, but my mom was there. She expected it to be a quiet event. Anne was in her nineties. Her husband Logan was long ago deceased. Her brother John was gone, as was Marie. Only Rosalie and a brother named Albert were alive. But the place was packed with nieces and nephews and their children and some of their children. My mom did not ask anyone, even her friend Rosalie, how Anne died. She has attended too many funerals of family and friends to put anyone else through the burden of explaining over and over how it happened. But she reported to me that Anne’s breast had turned black and dimpled where the cancer was visible. Anne had tripped and fallen recently. Her relatives thought the fall “woke” the cancer and it took her swiftly.

The family asked that people not send flowers. Make instead a contribution to the Susan G. Komen Foundation, the obituary said. Anne never fought cancer for herself, but she wanted to fight it for others.

As I drove out to visit my mom yesterday I thought about what it would be like to be one of those sisters. They let sleeping dogs lie. While some of us fight for life, they fought for life as they knew it.

I am not so very different from Rosalie and her sisters. I don’t wash my walls and it’s important for me to get out of the house and be with people; but I still watch local TV and refuse to pay for cable. I am happy that Anne got what she wanted. But, if cancer returns to my life, I intend to fight it, like my Aunt Arlene does. And, instead of letting others fight for others, when I can, I am going to help others fight, too. Because, if I do that, then I, too, will know peace at the end of my days.

Peggy has no expiration date. Anne will know peace at the end of her days. Arlene will live a long life. Joyce is 100% cancer free, her lymph nodes are fine and she has no lymphedema. My family and friends are my “secret” power. Prayer is the best medicine. Cheryl is winning her war against cancer. All of us find strength in knowledge and faith.

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