Not Down Or Out

It could be worse. I might not be laughing.

Month: January, 2012

Owning My Cancer

I wonder whether it is possible to sell my cancer experience on craigslist. You can sell all manner of things for which you have no further use there. I am weary of this disease’s effects on my life. This past week I have sobbed in public bathrooms at four campuses and a hospital because of the painfulness of the process of urination. Cancer did not cause that pain. Treatment of cancer did not either. Prevention of recurrence did.

I keep forgetting that I have undergone this “care” because my surgeon did not remove the lymph nodes that connected my diseased reproductive organs to my bloodstream. What was that all about? I wish I knew.

I started new classes this week on two campuses. I told some students about my situation. I continue to lose hair every day. I may yet have to wear one of those wigs I bought. My clothes are quite large on me. I roll my suit jacket sleeves up. My pants drag on the floor.  I can no longer put anything in my pants’ pockets in case the extra weight drags the fabric right over my hips. Now that this has become a possibility, I find myself studying the belts worn by, and the gaits of, those teen boys who wear their jeans below the hip bone so as to reveal their boxers. They remind me of traditional, Asian women with bound feet. They are constrained for fashion. I need to buy a few new outfits before this looks like an unfortunate fashion statement.

As I informed one of my classes about my diagnosis and current status, I said, “You may be wondering why it looks like I’ve been shopping for clothes at the Men’s Big ‘n Tall Shop, but I was diagnosed with cancer, have had surgery, chemo and radiation and, as a result, have lost weight.” They laughed at this characterization of my wardrobe and at the idea of me wearing a blonde wig with a long lock in front a la Nicki Minaj. I, too, am sometimes amused by my situation. I wish I could laugh even more, but there is pain also.

This week I met with a friend who has not seen me in months. She told me that I was a warrior. I do not feel much like a warrior most days. I am often afraid. I cry. I call friends and family and beg for a pep talk. These acts of weakness are not comfortable for me. I much prefer to help others through tough situations. I listen. I try hard to conceptualize what I hear. I brainstorm. I support. I guess that is not warrior’s work either. I am thinking about that cliche that states that if all the problems of the world hung on a tree and we could choose problems we would select those we now face.

Would I choose cancer? Would I buy it off of craigslist? I will never know. I checked and the site does not have a board for the sale of cancer.

I will own that I have had cancer because it chose me and not because I have noble reasons for claiming it. I also will own that I have chosen to take aggressive steps to prevent its recurrence. I will own the consequences of this prevention, too. I will not wish this on anyone else. If that makes me a warrior, so be it. I guess all warriors have times when they go forward in spite of fear. They do not always enlist for battle either. Sometimes the battle comes to them.

I will not pretend that this warrior handles these burdens gracefully or fearlessly. I will not have others who read this blog think that my strength made this challenge manageable. Every day is tough now. My good fortune in recovering swiftly from surgery remains a great source of comfort, but everything else since has brought me to the most painful stage in my life. I am reminded every day of my own weakness. I will own my weakness, too. That way no one will be confused about the nature of cancer.

The enemy is impossible to assess. I hope I have had all of the cancer removed from me in surgery. I agreed to a hysterectomy. I thought that meant the entire set of reproductive organs. One of my doctors said he would fix my hernia. Another doctor took his place and did not repair the hernia, all of which means that the cancer may still be inside me. My hernia, or, possibly, something else, hid the lymph nodes from the surgeon. Moreover, the cancer grew in me for years and so can recur even if no cell of the original cancer remains. I can take preventive precautions, but no one knows the nature of cancer well enough to say who will be its victim and who will avoid it. Cancer invades by many organs and systems. Its victims cannot predict well its point of entry. In some cases, its incursion will be slow. Mine was a low grade of cancer. I had time to catch it that I may not have if it recurs in another part of my body. It advances in stages. My stage was, I hope, early. That means it may not have spread. However, we can only guess at the stage. I have no reassurance of my cancer’s exact staging due to the failure to remove and test my lymph nodes.

My point is that my cancer will fight this battle as though it owns me. It will be difficult or impossible to predict how it will do battle or contain it even when its next point of entry can be predicted. If I spend every moment on prevention, my cancer will still act as if it owns me. It will have every advantage that its unassessed nature affords it.

What then, will I do as I battle this cancer? I haven’t the slightest idea. All I can think of to do now is own up to having had it.

I am not going to hide so that I will not again be discriminated against. That’s a battle like dealing with cancer itself, isn’t it? If I had not told DePaul College of Law that I had cancer, then my supervisor would not have “reassigned my students” on the theory that people with cancer always suffer setbacks that let down those who rely upon them. How can I be at once protected from discrimination and wise to hide what makes me different? Could I have hidden my thinning hair or my weight loss? If I hide from those who would discriminate, then I am not a warrior.

To demand the full measure of my right to be free from discrimination I must be able to be who I am. The blind cannot hide their disability. Neither can anyone else with a detectable disability. Racial minorities cannot hide their race. Isn’t it the point of anti-discrimination law that those who discriminate find those they victimize and strike at them? Some ethnic minorities have tried to hide their heritage in times when they were victims of discrimination. They have changed their names. Others have denied their own true natures to conceal themselves from discrimination. (Don’t ask, don’t tell.) That does not make them free from discrimination. The act of hiding who you are is evidence of suffering from the effects of discrimination.

I will be pretty busy. I must fight my cancer itself even though I already feel battered by it and treatment already received. I need to have a plan to battle cancer’s return, a plan that will have to address the fact that the medical community that serves me is focused on fighting one aspect of cancer but does little to help me fight it on every front.  I need to protect myself from discrimination on the basis of cancer and remedy discrimination already suffered even though it will not always be detectable.

As my doctors like to tell me when I beg for relief from more suffering, what’s the alternative? To let cancer win?

This is beginning to sound like the script from a bad movie. Any minute now the battle will start and the special effects team will engineer a scene that will save us all from the over blown drama of what went before. The good guys will win and the bad guys will lose. Only I don’t have a special effects team. Just a cause. Just a long battle to fight. No movie. If it isn’t something you want to watch, this might be a good time to get popcorn.

Goldilocks

On Monday I tried to talk the oncologist out of having me undergo cytoscopy on Tuesday because I feared it would be painful and cause more pain. However, as many of you know, she felt that if I canceled the test that I would not be able to reschedule. Having canceled once near the deadline, I would be a low priority for rescheduling.

On Tuesday, I drove to Barb’s house and she drove me to the hospital. When we got there the parking garage was closed to the public and patients unless you were disabled. We had to drive several blocks away to the Juvenile Justice Detention Center. Then we parked in an IMMENSE lot–bigger than the hospital’s entire lot. Then we walked (me, slowly and painfully) to the outside of the structure. We waited for about 15 minutes for a shuttle bus. I have the sorest knees imaginable these days. I am like Goldilocks. Every bed, chair, toilet, step, or bench is too low, too high or just right. Most are too low. As treatment has weakened me, I find it harder to stand up or sit down without the knees hurting. Somehow I managed to get onto and off the bus. We found the clinic that handles urology matters. The nurse came out to tell me the wait would be at least an hour. That’s the first time someone has done that. I really appreciated it as I was already stressed out. So we sat in another large waiting room and waited.

There was a woman who seemed to have come off of the street for shelter–although I heard her speak with the receptionists after she slept through her appointment. She wore multiple layers of clothes and carried a satchel and a backpack. The bags and her pants showed salt stains, suggesting she has stood or sat out in the elements during our recent snowstorm. Her pants were tan and covered with writing. I could plainly read the words: “Please don’t hurt me anymore.” There were other words written with marker on other clothing, but the messages were illegible. She wore sturdy boots on her feet–the kind construction workers wear. The heels showed long wear. She wore several shirts, a bulky, dirty, down jacket with a hood tied tight even though the room was warm. I could see other fabrics wrapped around her head inside the hood. She slept in a chair with her back to a pillar. Every once in awhile she would shudder, sit up, and whine piteously. Sometimes she spoke to no one in particular. 

The auxiliary society personnel pushed a trolley through the room and offered free coffee and cookies. Very few people accepted anything. In some cases, people were fasting prior to a test. People who did take the offer often had a soda in hand so were just taking a little something extra. The auxiliary ladies put out magazines as well. Imagine a doctor’s office without magazines. It’s common at this hospital. The gossipy magazines disappear quickly. The huge magazine with a tuxedo-wearing Brad Pitt on it remains longer. The folks at this hospital don’t much care if he looks good in fairy tale surroundings on a high fashion photo shoot. They might care whether or not he and Angelina will marry or if Jennifer wants him back. They want to know how to feed a family for a week for $40 or how the Kardashians are doing. I studied the pictures. He looks pretty good by candle light.

When I was called, the nurse took me back to a room used for various types of tests. I confessed my fears. I have been terrified of taking this test because I already am in pain. I am so burned from radiation that I cannot imagine a camera being inserted in my urethra. It hurt incredibly to have an internal examination and to have a catheter inserted and removed. I am weary of pain. I know from experience that no pain medicines will be prescribed that will ease this pain, much less avoid it. The nurse was nice. She explained what would happen before we began. I took an antibiotic pill and was given a second to take in 12 hours. Forcing a camera up the urethra to the bladder can move bacteria there and cause infection. The pills are intended to prevent that result. 

I took off all my clothes but my socks and put on a paper gown. I sat up on a table and had my blood pressure taken–a little high that day from my anxiety. 

I got onto my back and the nurse put my legs into the stirrups. She used a velcro binding to secure them. Then she draped me with enough sheets to go make a tent in the Sahara. Only the area to be tested was visible. She hung an immense bag of fluid from an I.V. pole. Think satchel, not a one liter bag. I was thinking, whoa, you can’t put all that water into my bladder. Ever since the radiation I think it holds a thimble-full of liquid with difficulty. 

She swabbed me with Bentadine–remember Mercurochrome? She told me it would make me itchy. I told her I had to work until nine that night. She promised to help me clean up after the test. 

Dr. W came in. I told him I was terrified. He promised to be gentle. But no one who isn’t undergoing the test can predict what hurts, can they? They put some Lidocaine on the opening of the urethra and let it sit a bit. It was supposed to numb the area. The area was small. Moments later the doctor said, “You’re going to feel some pressure.” I gritted my teeth and tried not to tense my body. Talk about pressure. Yikes. He got the camera inside. It hurt as it traversed the area to the bladder. Once he got there he saw blood. It made the images cloudy. He did not see any formations or growths that looked like bladder cancer or any stones. He tried to limit his moving around, but I was puffing like a woman in labor and trying not to cry.  

Then he irrigated the bladder with some of the water from his giant I.V. bag. When it wasn’t irrigating swiftly enough, he asked the nurse to climb a step stool and squeeze the bag to get the water to move faster. Ay caramba! Then he sucked that fluid out. They will test it to see if they can find any abnormal cells. It will take a week for results. 

He withdrew the camera. I was done. They told me that I would experience pain, bleeding, and other symptoms I already have, but worse. For several days. I knew this would be the case from the few postings I found on the Internet. My fears were realized. We had some more “good news” but I still did not know why I was in so much pain, how long it would last, and how to manage or cure that pain.  

The nurse cleaned me up with cold water. Yikes! Then I dressed. I was trying not to cry as I waited for a receptionist to “check me out” at the clinic’s front desk. More pain to come. I keep hearing that. I really do not know how much pain I am equipped to endure.  

Barb went for the car while I sat and waited in the hospital lobby. I was surrounded by pregnant teenagers waiting to see their gynecologists. They were eating ice cream and candy and laughing about how the doctors would react to their diets. They seemed proud to be pregnant at such a young age. It was getting them out of school. Two of the girls were clearly sisters. I felt immeasurably saddened by their conditions. I later went to school to teach my night class. I kept thinking about the prospects of girls who don’t complete their education.

Back at my apartment, I reflected on the day’s events. It does hurt worse now. I dread the bathroom. I cry when I’m there.  

I also learned a valuable lesson. I went for the test to figure out why it already hurt and why I was bleeding. I worried I might have as a side-effect of treatment called radiation cystitis. But there was no discussion of that during my test. Why? Because, now that I have had cancer, all anyone looks for in testing me is more cancer. What did the urologist talk about? Tumors, growths, abnormal cells—these are all code words for cancer. 

I wanted to figure out what I had to do to feel “normal” again. I get the feeling the new normal is “crazy.” I’m hanging in there anyway. 

I had a long talk with my cousin Susie this week. She helped me work through a few issues that have troubled me. First, for the last two months I have been trying to get someone to talk to me about my bladder pain and the fact that it bleeds regularly. No one has listened to me: not the radiation nurse who had to see a picture of the big blood clots I was passing before she took my pain seriously, not the hospital staff that “treated” me during my hospitalization, not my oncologist, not even the urologist who gave me yesterday’s test. I have put an incredible amount of energy into trying to figure out how much to be concerned about a bladder that bleeds every day and that hurts terribly every time it is “exercised.” I still don’t know whether I’ll be suffering this way all my life or for some time. I have no idea if I can do anything to help it recover from radiation. 

Second, I have no guidance as to how to live healthy going forward and no real prospect of getting any assistance in planning my future. I need to call in other assistance to do that. Dominique has given me a name of a naturapath. I need to make an appointment because I have spent all this time being compliant with treatment and have done little to work on prevention of recurrence. 

Third, there is no support in my current treatment for my mental health as I deal with cancer. Lucky me, I have family and friends who love and support me. Without them, I would have no resources available to deal with the fact that soon I, like my doctors, could be facing every challenge from the standpoint of “Is this a sign that the cancer is back?” I don’t want that to be my state of mind. I want to be much more positive than that. At some point I need to find the right form of support for me—a group, a counselor, a social worker. My friends and family will need a break. There is also a benefit in talking with people who have walked this road. 

It’s not just chairs and toilets, beds and couches that Goldilocks has difficulty handling. I have to find the right combination of information, support, analysis, and planning to handle the fact that I have had cancer. The hospital with which I am associated has helped me address the unknowns with respect to my pathology report—those untested lymph nodes. However, my hospital is a county hospital with a huge patient load and little support for its professionals. I need services it is not set up to provide to resolve my issues and concerns—immediate and long-term. It is coming to the point when I will have to start to find my own way through these challenges. It is getting to the point when I must seek out other resources and take charge of my life plan. I am tired and sick and not trained to handle this, but I am educated and surrounded by love and support. I may feel like my legs are too unsteady for me to go forward, but they are not. I can do this because I am not willing to coast or to wait and see. Cancer has not changed me, only a part of me. I am still in a position to navigate the trip I am taking. It is time to set a course.

Homecoming

Sue, my high school debate partner, stopped by today and brought lunch. We have known each other since the late 1960’s when we attended the local junior high school together. We had a great chat, and it was the perfect ending to my time at my mom’s home. Sue is the kind of friend who I might not see for awhile but we get together and are immediately on the same page.

We need to see each other more frequently. I was exhausted last night after a full week of work, a Friday snowstorm, Kathy’s departure at about 4 a.m. on Saturday, teaching my legal writing class Saturday, and my night spent alone at Mom’s house. By the time Sue left for her house I had the energy to pack up my car and head back to my apartment.

I have not lived in my apartment for an entire month. I have stopped by there on one occasion to get materials for my Friday law school class.

It felt good to walk in and listen to the twenty-eight voicemails on my message machine.

I had mail, including a package from Roberta. She had packed a box with little surprises that it took an hour to open.

There was a pashmina in red and black that is beautiful She bought me several little hats that could cover the thinned out hair atop my head. Each came with a matching scarf. There was a scarf like the one I described in an earlier posting. It formed a circle or cowl. It is beautiful. There was a little journal for me to write notes in. She included several guardian angels, a lovely teacup, a bracelet, a necklace, touchstones, cards, short messages of encouragement, small stuffed animals that made me smile, and most importantly, a rush of friendship and love that overwhelmed with its warmth.

That is not the only gift I received this week. Michael and Alice sent me a CD of soothing guitar music. Home has become even more soothing and protective. Kathleen, my landlady, had left a message of concern for me as, when I last spoke with her, I planned to be away only a couple of days over Christmas.

I stepped on a scale and realized I had lost at least another 17 pounds this month. I may be facing mounds of clothes that don’t fit me any longer, but my home surrounds me with reminders that I am not alone. I’m going to need those reminders. This week I will start another new class, bringing my courseload to five classes. That’s going to keep me busy. Add to that two doctors’ appointments, and I will soon be missing Kathy.

Speaking of Kathy, she stayed with me for three weeks. I do not have words to thank her for this tremendous gift of love and caring. I already have described all the things she has done for me. What really matters to me most is that it has been many, many years since we have been together for three weeks. Her daily companionship filled all the empty places inside me. I have heard that people who lose a limb may experience phantom pain from the missing limb. I don’t think there is an equivalent for people who lose an organ or two–as I did. However, ever since my operation in October, I have felt that something was taken from me. I had no dreams of having a child at age fifty-four. I am not suffering because I can no longer have children, but my hysterectomy was a reminder that I am neither married, nor a parent, and that I am likely to live the rest of my life alone. Kathy’s support and the gift of her time were reassurance that being alone is not the same as being lonely.

I have a sister and brother who have been so thoughtful and caring during these last couple of crazy months that I have been reminded that I am never really alone. On Friday night, Danny, Lisa, Kathy, and I gathered at Mom’s house for dinner together. The four of us laughed. Danny and Lisa drank some Raffaldini Vineyards’ wine while Kathy enjoyed her favorite box wine. Danny grilled some steaks. We watched some clever videos that Danny made. I had the Christmas holiday that I missed in December when I was in the hospital. There was a table at which family gathered. There were hugs and shared memories and laughter. We exchanged gifts in the form of jokes and stories. We were reminded that we are not alone and never have to feel that we will be.

I received gifts and messages of love from Michael, Alice, Roberta and Sue. I called Paul, Barb, and Roberta. I called Mom to check on her and was happy to hear she was having fun.

Tonight I am surrounded by Christmas cards that the postman delivered while I was away. I am now wrapped in a quilt on my sofa listening to soothing music. I am transported far away from the pain that persists in my body after treatment, poking, and prodding. Instead of contemplating this week’s planned medical procedures, I am typing about the pleasures of home and family and friends.

We can wait for a holiday to create and savor the sense of homecoming that holidays engender. There will be another family holiday in the spring when we gather for Easter. But the truly magical aspect of family is that they can create a holiday just by gathering around us. I’m calling it Christmas, but it doesn’t need a date on a calendar. This holiday that is homecoming needs only love to make it happen.

I am surrounded by love this holiday season. I am sheltered by that love from my fears and anxieties over what has happened and what will come. I celebrate the giving and receiving. I bask in the warmth of shared jokes and laughter. I do not know what lies ahead, but I know that my family and friends will be there with me whatever happens. I don’t smell evergreen trees. There are no colored lights or ornaments. Yet the holiday spirit fills me. Happy Homecoming one and all!

Mitigating Damages

On January 20th I will resume teaching law students at DePaul. On the 18th of the month I attended a lunch for instructors at which we reviewed the upcoming schedule and assignments. No one said anything about my disappearance in the previous semester. Martha did not address any comments to me individually. We acted as if nothing had happened.

I was sad. It will be wonderful to return to teaching the class. I enjoy my law students. But our differences over whether it was appropriate to “reassign my fall class” or “terminate” me has injured a working relationship I once enjoyed.

When lunch ended I cabbed my way to Barb’s. Kathy was waiting there. I dozed on Barb’s couch while Kathy worked. At 5:30 I conducted an information session for the DePaul Paralegal Program. Twenty-five people came to hear more about becoming a paralegal. I answered questions. I held a similar session at Naperville on Monday evening for seven people.

There is a possibility that Roosevelt University will not need me in the spring. If that is the case, then I need three sections at DePaul Paralegal to maintain my income. I have already lost one class this semester. I have not been asked by the law school to teach Transactional Drafting since Spring 2011.

Kathy will head home on Saturday. I am grateful to her for her care these past few weeks. She has driven me to and from schools, picked me up at building entrances, made me meals, done grocery shopping, and screened calls. She has stroked my hair during bouts of severe pain. She has met my doctors and asked questions I am too tired to pursue. She sprang me from the hospital when my energy was flagging. She has prevented me from letting people down.

Barb has a big birthday this weekend. She leaves today for a spa weekend with her brother and his wife. Barb and her brother have birthdays a day apart but were not born in the same year. She will return on Sunday. I hope she gets some much needed R&R. She has been busy caring for others these past few months.

My brother Danny flew in this morning. He has two days to visit his wife Lisa. He and Kathy have not seen each other since they were in Chicago for my surgery in October. Kathy picked him up at the airport. We hope to get together tomorrow evening. It’s sad that Mom is not here so that we could all be together.

Mom is in Florida with Aunt Joan and Bernie. We hear the weather has been chilly. However, Mom has visited with Kim and her sister Julianne. They have been staunch members of the “prayer group” that has kept me going.

When Danny called a few nights ago to see how I was doing, he said, “You know, your having cancer has stirred everyone’s lives up, hasn’t it?”

“Yes, it has,” I answered.

“Well don’t go doing that again any time soon.”

I won’t.” I laughed and shuddered at the very idea.

We have been at this long enough that we can jest about the possibility of relapse or recurrence. Even a week ago the prospect might have sucked the starch out of me.

Bad things happen to good people. All of us hear this from time to time. When bad things happen it sometimes doesn’t even matter whether we have been such good people. It feels bad whether we are good or bad. We try to resolve our sense that these events are unfair. We carry on as though nothing has happened on the theory that nothing has. We cling to loved ones who will help us fare as best we can. We seek the company of loved ones who have also known sorrow and we commiserate. We get away and hope that, even for a couple of days, laying down our troubles will detach them from us. We face our woes and laugh at them because that which we can laugh about cannot defeat us.

The alternative is to curl up in a little ball and let what frightens us surround us. Isolated from loved ones, friends, escapes, and perspective, we can suffer quite a long time. I have done my share of that in my life, too.

When I see someone suffering I hope that I can remember to extend myself to prevent that isolation from trapping people I care about in their suffering.

I do not know whether God is the type of being that consciously visits suffering upon persons. I do not know if there is a message for me from Him in my current health woes. I do not like to think that tragedy is deserved even if I make the occasional comment about “karma.” My personal view is that, having created a world in which persons have free will, God exposed us to the consequences of events outside of our control and rarely interferes. That I am born with certain skills and features is the result of others’ choices. The fact that I suffer from cancer in my lifetime is the result of genetics, choices, and happenstance. I can pray to avoid certain events that are consequences of other’s choices, my own, or fate’s, but I will not be spared because God loves me more or because I am better. I am sometimes lucky enough to call his attention and win his help. When that is not the case, I am not lost or unloved. If God did visit suffering on only those who were bad, then why would He urge the rest of us to feed the hungry or clothe the naked? Wouldn’t He instead exhort us to leave undisturbed the punishments He had imposed on those not in His favor?

Let us all recognize that we live in a world that can protect or endanger us. Let us be kind to others when they need our help. Let us be worthy of that help by doing good when we can. Let us forgive those who we feel have wronged us because we are capable of wronging others, too, sometimes without meaning to cause harm.

In a world in which all have free will, we can choose to mitigate the damages imposed by others’ errors, our own errors, or fate. The grace that inheres in helping others is God’s grace, too.

Rx: Kindness

On January 17th Kathy and I woke and prepared to drive downtown for my CT scan at the hospital. I was tired. I have not slept well in many weeks. Between hydrating, diuretics, stool softeners, and anti-spasmodic drugs like Vesicare, my body has no idea if it’s coming or going. Some nights I sleep ten minutes, sit on the toilet for ten minutes, then react to pain for ten minutes. There are nights when I wander my mom’s house because I cannot sleep at all. I do laundry. I fold towels and wash cloths. I check my email. I take my meds. I sway as I sit on the edge of the couch. I drop what I am holding. I pray that, if I fall, it will be back on the sofa and not on the floor. I would love to take a nap that lasted an hour instead of minutes.

Kathy drove downtown in the rain. It was the end of rush hour. Driving was slow. My diuretic had kicked in. We stopped at the McD’s on St. Charles Rd. so that I could run indoors and urinate. I passed enough blood that the toilet water was red afterward. There were several clots–all large. I sat in the car with both feet pressed to the floor because the pain was about 5 on a scale of 10 when I did nothing.

Once we reached the hospital we learned that the public parking garage was closed. We decided that Kathy would let me off and drive to Barb’s home to wait for news I was done. Thank goodness for Barb, her spare key, and Kathy’s GPS.

I went to the Fantus Clinic across the street from the hospital. It is a very sad place. The facility is old and filthy. It is packed with people requiring assistance to maintain their health. I did not have a precise destination–thanks to Robocall. Several people directed me to leave the building and walk around it to find another entrance. By that time it was snowing and I had left my coat in Mom’s car. I walked around the building until I found the CT scan offices.

They expected me. I signed some papers and was directed to a waiting room where we were seated a few feet from a TV that told the story of Robin Antim and the Pussycat Dolls. I am sick of daytime TV, particularly when the subject matter is “celebrity.” Beautiful women who can sing make it big by doing so in lingerie. Is this new? Are we impressed because a woman created the franchise?

A technician handed me an immense bottle of sterile water and a cup. “Drink it. All of it.”

My body flinched at the thought of so much water interacting with a diuretic and a wounded bladder. I guzzled it anyway. It was like watching a chemo drug drip into an I.V. port. You want to say, no, but what is your alternative?

I was instructed to take a seat in a nurse’s office. She asked me if I suffered from numerous conditions. Then she installed a port for an I.V. in my right arm, right where it bends. I was directed to a room with four dressing rooms. I took off my bra and put it in my purse. I went back to waiting.

By the time I was called to the scan room, I was sweating over the strain on my bladder. I sat on a table, reclined, put my arms over my head, and tried to relax. The technician hooked me up to the I.V. of contrasting fluid. The technician withdrew. Robotest instructed me to hold my breath and then release it while it moved me back and forth through a doughnut-shaped scanner.

I eventually tried to communicate with the technician that I had to urinate. He did not respond. When the exam was complete I scurried to the bathroom to relieve the pressure on my bladder. The janitor was there cleaning. When he left, he left a sink filled with opened wet wipes and used paper towels. The trash can was empty and some trash had been shoved toward corners. The floor was dirty.

The nurse removed the I.V. port and told me to try to flush the I.V. drug out of body A.S.A.P.

I put on my bra and sweater and braved the snow and wind to walk around the clinic to another entrance. I needed to go to the third floor to have a blood and urine test. I was in that lab once before Christmas. Now I was there after the Martin Luther King holiday. The room was packed. I was assigned number 424. The phlebotomist was calling people with numbers in the mid-300’s. I asked for the urine sample cup before going to the bathroom. The clerk, at first, wanted me to hold it, but relented. However, I would have to hold my cup until after my blood test. I knew I needed to catch the fluid when it passed. I have not yet learned to urinate on demand.

I entered a bathroom so filthy it took my breath away. Someone had consumed part of a sandwich but had thrown crusts on the floor. Someone else had smashed them beneath her shoes into the tile. An immense roll of toilet paper was tied with a garbage bag to the handle on the wall. The sinks were choked with used paper towels. A passway connected the bathroom to the lab. You could place a labeled sample in the passway for collection by technicians.

I hung my purse around my neck, collected my sample, washed my hands and left. I waited in the waiting room for nearly two hours. The clerks did not face us as we entered the lab. The one who checked me in looked like the mom on Everybody Hates Chris. She wrote with a pen with orange feathers attached to the end of it. It looked like a feather duster. It probably represented a whimsical personality, but, in that crowded, dirty, germ-filled environment, the orange feathers looked like a few strands of tinsel on a homeless man’s carboard sleeping box.

People coughed incessantly. At times it felt like the mass of people among whom I sat drew in breath and exhaled together, passing their germs like the wave at a sporting event. There was a woman with an unruly toddler and a baby in a car seat. She three times left the baby in line to run after the toddler. A man watched a movie on a DVD player. The noise was distracting. Two-thirds of the room was the pick-up place for prescriptions. Roboannouncer told us every two seconds what numbered customer was being assisted at what number window. The crowd was mostly African American and Hispanic. I counted four Caucasians–one wore his hair ZZTop length, tied with a piece of leather at the nape of his neck. He wore a cowboy hat and a leather vest. He wore a gold ring on every finger. A handsome young man looked fit in his navy sweats. Two other women wandered, seeming incapable of waiting in a seat. Many people spoke foreign languages. People shouted in English instructions that volume could not render intelligible to folks foreign born.

By the time my number was called, I was exhausted.

They lined us up on plastic chairs. Someone called out that we should take off coats, roll up sleeves, and have our paperwork in hand. I was called by number to a tiny room with a phlebotomist.

The phlebotomist verified my name and date of birth. Then she addressed me by my first name.

It was the first time I had been addressed that way in weeks other than when meeting with my oncologist.

I actually felt my eyes fill up with tears.

She needed to stick me three times to finish the blood test. She could not locate the label for my urine sample and kept me waiting while she obtained a new one, but I don’t care about any of that.

Most of us are judged by small acts. We do not often save lives or poison the town’s water supply. I spent the rest of the day thinking about the importance of a smile, a name, and a kind word. On January 17th I spent three and a half hours at the hospital to get three tests done. The healing I experienced was from a “prescription” handed out in the tiny room occupied by a phlebotomist. She handed out kindness like it was commonplace. It is not. But a little kndness goes a long way.

Robocall

On January 16th, I rested under a blanket on my mom’s living room couch with a heating pad on my knees. I have been holding water in my limbs and have been taking a diuretic, but water still collects and causes pain as I move.

My cell phone rang. I answered and learned by a robot call that I have an appointment for a CAT scan tomorrow at 11:15 a.m. in the Fantus Clinic. It was news to me.

The dehumanization of patients begins with the dehumanization of hospital workers. If the making of an appointment is dictated by a machine, then it tells the patient that your time does not matter, ergo you do not matter. It also tells people with excellent telephone skills that their jobs can be performed better by unfeeling machines that do not engage in give and take. We should not be placing all of the blame for the incivility of texters on the texters. They are responding to a society that no longer values the service inherent in a personal phone call.

As it happens, I am available Tuesday at 11:15 a.m., but it makes for an extraordinarily long day. I teach Tuesday night at Naperville, a long way from the hospital. I have work responsibilities every day of this week. Had they wanted me to come at the same time on Wednesday, I could not be there. Wouldn’t all of us feel better if we treated each other to some old-fashioned one-on-one communication?

Machines are everywhere for our convenience. There are toilets that flush every time I move while hovering over a toilet seat. I think such a machine caused cross-contamination of my bowel to my urinary tract (not that I can prove that). A machine emits soap or disinfectant or heat when I move my hands under a soap dispenser, disinfectant dispenser, or hands drier. How are those things working for you? I see more soap on sinks and bathroom floors than ever. Doesn’t the hands drier draw air from a filthy floor to dry my newly cleaned hands?

I recently spent days of “quality time” hooked up to I.V. poles and liquids. The machines were fancy. They told me what drug I received, the speed of delivery and if the equipment operated unimpeded. Did I require this information? No. My nurses did. Did they get it? No, not unless they came to shut off a beeping alarm because the line was occluded or the I.V. bag was empty. The beeping woke me from fitful sleep. It startled me when I was close to drowsing. I learned to shut it up for short periods of time. It alerted me that I needed care. My nurses rarely heard it. To summon a nurse I still needed to ring a call button. Someone would answer. I would wait, with the alarm beeping, for someone to come by to resolve the issue. On many occasions a nurse would come turn off my call button and then leave me waiting even longer with the I.V. beeping, until someone else could return to fix the problem. The end result was that the new equipment served as a reminder that I was getting less than prompt or effective care.

I recognize that the public has become increasingly “rough” on service people who call on the telephone. I have prefaced calls to service personnel with an acknowledgement that I am angry at someone else in an organization. I have seen horrific news reports about people with guns lashing out against strangers in an organization that did some “wrong.” Folks get killed for giving the finger or shouting an epithet. The persons shouting loudest about their need to be respected sometimes show no respect to others. We are quick to escalate our matters, raise our voices, and pound our podiums when we do not get what we want. In politics we have elevated to public office people who will say “no” to any options other than those that serve their narrow agendas. A representative democracy has become an explanation for incivility between the elected representatives of a city, a state, or a nation.

I don’t care for the idea of making appointments by dictating day and time by robocall. I prefer to speak with a live person at a place of business. I like to flush my own toilet and dispense soap. I wish I could call and speak with a service person who cares whether I remain a customer. I hope my elected representatives can listen to other points of view and help generate compromises that resolve problems rather than polarizing issues.

If anyone is listening, I wish that Hal would open the pod door for me. I’m ready to get off this robot-driven, life’s conveyor belt. If you care to speak, then I care enough to answer your call and talk about it.

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.

The Doctor Will See You Now

The first week of January was difficult. I suffered every day from the side-effects of radiation and chemotherapy.

I ate Jello, pudding, canned fruit, apple sauce, chicken noodle or chicken and rice soup, and various chicken and noodle dishes. I drank water and cranberry juice until I floated in a sea of fluids.

I suffered from diarrhea and constipation, bloody urine and blood clots.

I tossed and turned in vain efforts to sleep, sometimes managing up to two hours of sleep in a day.

My knees were swollen and sore from rising and falling onto low chairs, couches, and toilets. My left hand was swollen as were both of my ankles.

I called the doctor to ask whether there might be a way to ease some of these pains. Once again the doctor told me I needed to accept this pain.

I returned to classes. Kathy drove me to my classes at Naperville and the Loop. I graded more than one hundred student papers that week. Each day we sat down over a final meal of the day and tried to figure out whether it had been a good day or not. We looked for signs of improvement. The truth is that for every step forward there were retreats.

On January 9th we drove downtown for my appointment with my oncologist. I was in terrible pain. I bent at the waist and clutched at my own waist. Kathy stroked my shoulder and whispered words of encouragement. We watched as other patients arrived. Kathy said, “They all look like they know something sad.” I answered, “They look like they are dead inside. Cancer has stolen something from them.” Kathy nodded.

I lost four more pounds. My blood pressure rose to 177/77. I had no fever. My skin burns were scabbing over. I was exhausted. Kathy and I were shown back to an examining room. We filled in Dr. Z on the last few weeks’ events. Dr. H joined us.

The doctors remained shocked that I had so much hair on my head. Dr. H asked me if I had any African American ancestors. None that I know of. She smiled and shook her head. I would need a magnifying glass to find a hair on my chin, but my hair is falling out without leaving any bald areas. In fact, most of what has fallen out was gray. You can barely see the line from my last touch-up. I have eyelashes and eyebrows.

They studied my swollen limbs and put me on a diuretic.

They doubled my dose of Vesicare. It reduces my anxiety over frequent, urgent urination–a little.

They changed my pain pills. I now take Naproxen and Hydromorphone.

They scheduled me for a camera examination of my bladder for the 24th. It seems likely that I have radiation cystitis. It is another side-effect that only time will heal.

I feel so devastated by these side-effects, but it is clear that all I have suffered is still in the range of normal effects. I find it difficult to believe that I suffer from normal conditions. Normal has never been like this, and I do not want to ever accept these effects will be permanent.

It cost me more than $400 to fill my prescriptions. That was with a discount. By the end of the day I understood that the new meds did no better at managing my pain.

I am bruised, scabbed, blistered, and bent. There is no question but that I am engaged in some extreme martial arts event against cancer. My sores and scars show I have not won every round. But the other guy is nowhere to be found, is he? Take that, Cancer! I’m not down or out. I’m still on my feet and ready to rumble.

Hitting the Road

Mom left for Florida with Aunt Joan and my aunt’s boyfriend–Bernie. They rented a condo in Siesta Key, Florida when I was feeling much better. As they prepared to set off we understood that they would take several days to get down to Florida. Nevertheless, on the morning in question, Aunt Joan and Bernie left her home while it was dark and roads were icy. Aunt Joan fell on her own driveway and still departed early. We waved Mom off and prayed she would be safe.

Kathy and I stayed behind. She made a trip to Costco and returned with countless single-servings of fruit, soup, applesauce, and similar items. She cooked meals. She kept my water glass filled. She covered me with blankets. She watched the clock to keep my meds on schedule. She screened calls and kept family and friends updated.  I am not used to so much attention.

There have been days when I was in terrible pain. I have writhed on the couch as I tried to pass a large blood clot. Kathy has stroked my head or held my hand. She has taken out her rosary and prayed for me to be relieved of pain. She has tossed an extra blanket over me. She has prepared lunches and dinners. It was the end of a month and a year and she was far from home, but she juggled work and nursing. She called on her husband and children to help her make this work and they answered her call.

Barb was my first visitor. She was feeling bad for having left town for Christmas week. Barb has been a wonderful friend. I never expected her to miss spending her first Christmas without her mom with family. Sue, my high school debate partner, came by with an armful of flowers. She had us laughing over stories from her family. Dominique and her husband Pete came by with colloidial minerals, calcium, and probiotic enzymes. My mom’s friend Maggie called to tell us she was going to be calling us to check on us. We’re in our fifties. We laughed, but she has called again to check on us! Lisa came over one evening and we shared dinner and family news.

In between brief visits and calls I try to sleep. Sometimes I sleep ten minutes, try to urinate for ten minutes, and cry for ten minutes. There have been days when I slept a total of two hours. I find myself seated on the couch, balancing on a my burning posterior. I have nearly fallen while walking across a room because I am exhausted. I need a tug sometimes to rise from a too-low soafa or toilet. I sometimes ride in the backseat, like Miss Daisy, as my sister drives me to my classes. I have fallen asleep in the middle of a conversation with Kathy. My sister has been so patient that I will never be able to match her generosity. I pray that she never has such suffering in her life. Let me be the only one who must physically bear this suffering.

As the new year–2012–rolled into town, Kathy and I slept on opposite sides of Mom’s den couch. We nodded and closed our eyes. As I drifted in a sea of pain and exhaustion I was grateful for my siblings. If I am a cancer survivor, then my siblings may be the people I know best in my life. I will know them longer than my ex-spouse and any of my wonderful friends. I may not have chosen my siblings, but I could not have chosen better than Kathy and Danny.

Life has set us on a road through illness, stress, and shared laughter. My siblings did not have to walk this road with me, but they have chosen to do. When I am buoyed up by their kindness, their laughter, and their strength I am stronger. The power of our shared experience is so much more than the sum of our individual strengths.

Last night, as I hovered between sleep and pain, I prayed that anyone who had to face cancer would find in his or her family and friends at least one person like the team that surrounds me. Even cancer can be eclipsed by the power of love. The weakest among us can survive a little longer on the strength of such love. The caregivers give so generously. Their generosity may never be acknowledged. They may give until they hurt. But they are heroes and heroines. Each brings super powers to the battle. I pray today for these road warriors, that they receive what they give in even greater measure. I pray that they get their sleep tonight and a good meal tomorrow and a hug and a kiss every time they open their eyes. An email, a letter, a call, a visit,  these may seem to be small gifts, but the greatest gifts can arrive in small packsges.

The people who make my suffering lighter lift it from my shoulders a little at a time. I thank God every day for bringing them into my life. I thank them for staying with all my heart. I trust they will let me help them if they ever need my support.

Taking Flight

When the doctors came by on rounds the next morning, I rose from my bed and presented my own case. Not surprisingly, everyone appeared to be in agreement that I needed to be released. We settled on a time of 4:30 in the afternoon.

My sister Kathy would fly from DC to Illinois and she and my mom would pick me up at the hospital. I begged them to not be late. I needed to escape. My sister assured me her flight was on time. Nevertheless, her plane had a flat tire. She waited in DC for someone to find a jack to replace the failed tire.

Father Eugene Nevins, SJ, came to see me. He gave me communion and we said the Memorare together.

Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thine intercession was left unaided.

Inspired by this confidence, I fly unto thee, O Virgin of virgins, my mother; to thee do I come, before thee I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in thy mercy hear and answer me.

Amen.

He gave me some prayer cards to help me focus my message. We discussed the role of prayer in my life. I counted the moments until my release.

I ended up being transported to the pharmacy on a gurney instead of a wheelchair. Kathy picked up my prescriptions. We piled into Mom’s car and peeled out of the parking garage. I had never been so grateful before.

Even now, as I write about that day, I weep with a combination of fear and relief. I have never felt so alone in my life as I did when I was hospitalized. It was Christmas. I was alone. It was painful. I never knew a moment of relief from pain. My family and friends were at a distance. All of them shared my sense of frustration at not being able to command better care for me.  I left the hospital in about the same condition as I arrived. My bladder was burned. I passed blood and blood clots. I was in pain. My bowels were fried.  They bled, too. I was hungry, exhausted, and afraid.

I was grateful for strength that kept me going, family that answered my prayers, a God that heard those prayers, and friends who cared.

The phoenix took flight.

Be sure to click on Older Posts links for more January 2012 posts.

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