My knees have improved somewhat. I have been taking my Chemo Klenz and Rad-Tox homeopathic remedies. I also take a giant Osteo Bi-flex tablet once a day. I sleep in my bed because I can slide out of it down to the floor rather than struggling to rise from it (as I would have to if I slept on my couch). It used to take a count of sixty to climb a stair. Now I can make it up all the stairs to my home in about that time several days of the week. As the weather warms up I may do even better. The cold is not kind to my joints now. Spring may help.

I have body aches I never had before. My left rotator cuff sometimes hurts from sleeping in my bed rather than on my couch. My nose still bleeds some every day.  I still have a radiation burn on one thigh that has not quite healed. There are red marks where others have healed but not faded from sight or memory. But all of these discomforts have become “normal” after all of these months.

I keep a journal on the sink in my bathroom and mark down every visit there. I make a check mark. I add little scratch marks to show the level of pain I endure during those visits. There is one scratch mark for discomfort, a second for pain, and a third for real suffering. I can see that, even though I am in the bathroom at least twenty-four times a day, there are an increasing number of check marks without scratch marks. The pain, when I mark three scratches to record it, is still terrible. But I no longer cry over it. I still suffer from extreme urgency problems. I have become accustomed to wetting my pants because I seem incapable of stopping once I start. I now keep clean underwear in the bathroom for convenience. The truth is that I am learning to live with the changes in my body and even terrible pain.

That has taken a toll on my peronality. I am tired. I attempt to sleep for about eight or nine hours a day–even though I wake every hour.  I have more road rage. I have often rolled down my car window to yell, “GO INTO THE LIGHT!” I no longer laugh at myself when I do it. I gripe more. I give myself time at the end of most days to just sit, sometimes in the dark, and reflect on all that has happened to me. So much has happened that I already am losing my recollection of some of it while other events feel like wounds unable to heal.

I heard a song on the radio by Martina McBride “That’s What My Love Is For.” In it, a woman faces breast cancer with the support of her husband. She wishes the cancer had not taken from her things that have left her feeling like she is less than a woman. I have not had breast cancer or a mastectomy. But I remember being a teen when Lil, a dear family friend went through that surgery. Her husband Sten took my grandmother into their bedroom saying, “Look at what those doctors did to my Lil.” His voice nearly broke, not because they took what made her a woman, but because she was hurting and he could not bear to see her in pain.

My loss is not the same at all. And I am fifty-five, not thirty-eight like the woman in the song. But there are times when I feel less feminine now that I have lost my hair and grown a whole new patch of dark hair near my chin. Sometimes I feel a little sorry for myself. But that is getting better, too.

The thing about being fifty-five is that I don’t need my “reader” glasses to see that my eyelashes, eyebrows and hair are returning. I do need my 10X magnification mirror to see the new hairs on my chinny chin chin. I don’t need my little journal to know that my bladder is healing a little, but keeping it is a reminder that I still suffer quite often. When I sit in the dark contemplating my life these past few months, it seldom produces positive feelings. Soon I will ponder with the lights on and the shadows chased away. I listened to Martina sing, but I resisted going out to buy her album to spare myself the wallowing in sadness that comes from repeating the song.

I am not ready to stop paying attention to all these little signs of progress or suffering, but it must be a sign that I am getting better that I am considering dispensing with some of them.

The truth is that I am getting better.  I will pray that I continue to get better. I will eventually stop marking the negative events and focus only on the positive ones. That will be me getting back to “normal.”

The hairdresser, Mariam, has opened a new shop where a men’s salon used to be. She and her granddaughter were alone when I entered. I appreciated not having a big audience for the “reveal” of my wig-flattened hair. Mariam urged me into a chair and sprayed my head with water. She asked me about my cancer, my treatment, my hair. The last part of the conversation felt like a conversation about a person not present in the room. “She is thin?” Mariam asked or commented.

I nodded. “Always has been.”

“”You may not know her in six months,” Mariam predicted. “I know hair that grow back thick like mine after chemo.”

I admired her thick brown hair. “My hair has never been that thick.” I smiled.

It did not take long for Mariam to snip my hair into some semblance of a style. She blow dried it in about two minutes. The brush she used barely caught at the one inch strands, but, following her efforts, my hair appeared thicker. I smiled, but I was missing my old hair. My new hair makes me look old. It is far too masculine for my comfort. I used to wake up in the morning and my hair looked the same as it did when I went to sleep. Now I look in the mirror every morning at a cloud of hair that stands up in no particular style. I wash it once a week and finger comb it the rest of the week with wet fingers. I still pluck far too many strands of it off of my pillows and clothes to handle it more than that. It is like the rest of me: a little too fragile. Imagine having to eat every meal, including those consumed on the run, from your grandma’s best china. It makes me pause. Instead of feeling aerodynamic, I feel weighted down.

Both of us studied my reflection. I got up, managed to close my finger in a drawer on the counter, and grabbed my purse. Fifteen dollars seemed like a great deal of money for what took place, but Mariam gave me a card. If she cuts my hair four more times, then the sixth haircut will be free. I would like to think that by then my hair will be recovered, even if my hair looks nothing like it used to look.

My eyelashes are back. My eyebrows are returning. Cancer is getting farther and farther behind me even though its specter is never that far away.

This past week my boss made a joke about how I and the chair on which I sat fit beneath my winter coat. I went home and hunted through my closets until I found a winter coat I wore more than ten years ago. It fits again. After I got my hair cut, I drove home and then decided to go out again (minus the wig) to buy a few clothes in a size much smaller than I have been wearing. I may long for what used to be, but I am moving forward into what will be.

Once I entered the hospital I felt like I had come “home.” The crowds of patients that assemble before the elevators “open” at 7 a.m. had just finished boarding elevators. I had to wait for an elevator. I rode it down to the basement level and walked slowly toward the cafeteria. My appointment was not scheduled until 9:45 a.m. I had time to waste. I stopped in at the women’s room, but it already was a mess. I decided that I could hang on a little longer.

The cafeteria was populated with doctors in scrubs and those yellow gauze apron/gowns they wear in sterile environments and then outside of them. Three female doctors sat at the closest table talking about an older surgeon who could not resist flirting with younger female doctors and residents. “He’s old enough to be my father,” one doctor proclaimed. Another responded, “Agewise, but not emotionally. He still confuses mandatory flattery with actual admiration.” Three women laughed.

At a nearby table three male surgeons sat together discussing a procedure already performed that morning. As they rose to take their breakfast trays to the conveyor belt that would carry dishes to the dishwasher, they spared one look for the three female surgeons. The women observed this with an eyebrow raised in unison. “Orthopds,” one said dismissively. “I like your new clogs,” continued another.

I finished my cherry yogurt and decided to take a tour of the hospital’s many women’s rooms. It took me about twenty minutes to find a relatively clean one. Then I headed for the elevator to take it to the second floor–Clinic H. I held the doors open for a nurse dragging a little suitcase and assorted patients. All of us exited on the second floor.

It was about eight in the morning. My appointment was for 9:45 a.m. The receptionists for Clinic H have stations along a U-shaped desk. Patients stand at a distance in a line. We have been issued a sheet of paper with our appointments listed upon them. We get called up to the desk. We present identification and any insurance information. The receptionist was handling another patient while I waited in line. She told the woman that we had to be there one hour before our appointments but could not check in more than one hour before an appointment. The other patient spoke Spanish and was confused.

I left the line to take a seat and wait. I knew that, by the time it was 8:45 a.m., the room would be packed and it would be difficult to get to the desk. “Where are you going?” the receptionist asked.

“I’m 9:45,” I answered.

She went back to typing. Nevertheless, ten minutes later she called both of us to the desk and checked us in before our allotted times. Rules are made to be broken by the people who make them.

The room started to get crowded. The hospital was closed for President’s Day to save the county money. As a result, last Monday’s patients were scheduled for this Monday. The patients were an interesting lot. Today the room was Hispanic. About 50% of the patients had last names like Sanchez or Vazquez. Only one receptionist spoke Spanish. As a result, names were called in a manner that bore no relationship to correct pronunciation. My name can be read phonetically but was called out as “Chell Kale.” I did not answer for some time until I heard “Cheryl.”

There were about five Asian gentlemen, no Asian women. Demographically, the Asian men were older than anyone else in the crowd. They wore white athletic shoes and several had Bluetooth devices hanging over the top of one ear. They were whisker thin and dressed head-to-ankles in beiges and browns, as if they had received the same instructions that morning.

There were four Polish or Eastern European patients, all women accompanied by male companions. One man with dark hair and a dark beard stalked back and forth through the room, all the time talking on his cell phone in his native language. The women were soft-spoken and had pretty names like Irina.

The rest of the room was African American or Caribbean. There was one woman with scarlet hair twisted in tiny tufts like skeins of starched embroidery floss. The color stood out against her tan coat, scarf and fedora. I could not stop staring at this exotic bird’s feathers. It reminded me of Barb’s statement that every afghan included a scary color. This woman’s hair was Kool-Aid red. But she was no Easter chick with a Rit dye job. She was my age. The color of her hair was vulgar, yet arresting.

The same nurse who rode in the elevator with me came out to collect me and took me back to test my vitals. I returned to the waiting area, which had grown more crowded during my absence.  As I waited, a tall, African American woman with newly growing hair and a white, down coat joined the line. I waved to her. It was Wanda, a cancer buddy I met on my first day of chemotherapy.

We hugged. She continued chemotherapy and radiation after I finished because she skipped several treatments for dental problems and because she was tired. Like me, Wanda had uterine cancer. She has the same doctor. She has already suffered a relapse. She told me that, like me, she has declined internal radiation. They wanted to treat her rectum. I told her that I had so far declined internal vaginal radiation. I told her about my week in the hospital back in December. She was shocked to hear that the hospital had not supplied me with toilet paper for two days during my hospitalization. Then we hugged again.

I have missed my cancer buddies. As much as I lean on my family and friends, there are things other cancer patients understand without your having to say anything at all. The price to join the club is so steep. Once you have paid it you know how scaary it is to have a disease that people undergo cancer treatment to avoid. The cancer treatment makes the worst case scenario seem more terrifying than The Exorcist. Imagine being possessed by a demon that can waste you away. There were women in the waiting area today that were skeletally thin. There was a woman in a wheel chair whose shiny white head and face were luminous. I felt as if I sat beside a creature no longer of this world–a human version of the lightning bug. She had one foot in heaven, one still here in hell.

Many of the women left their wigs, if they owned them, at home. Some of the wigs worn were a little scary. One had been curled with a curling iron. It reminded me of a head topped with red checkmarks.  Another was stiff with sweat or product. It stuck out from beneath a bedazzled cap like the Lorax’s moustache. My eyes kept returning to the scarlet-dyed locks of  the woman across the room.

When my name was called again I followed my nurse back to the consultation area. Dr. H’s trainees awaited me. Dr. Z disappeared. I took a seat and waited while the junior doctor or resident (her name remains a mystery) reviewed my test results and inquired about my condition. It was after 11:00 a.m. Dr. H was still with another patient.

The doctor was much chattier without her colleagues. We discussed my bladder, my bowel, my shoes, my exercise plans, and everything else on my list of concerns. She printed a copy of my cytoscopy results for me. When she had everything ready for Dr. H, the junior doctor left the room.

Dr. H joined us about five minutes later. We all gathered to run down my list. The written report from the urologist said that he could not rule out acute radiation cystitis. I volunteered that I was not inclined to seek internal radiation in light of my bladder’s condition. Dr. H agreed that there was no point in further burning my bladder. I asked about the hyperbaric chamber. My friend Mary researched it and found that it has worked in 68% of cases of cystitis like mine. I know, it sounds very Michael Jackson to climb into a tube a little bigger than a hot water heater and let them pressurize it. The oxygen fills your blood and repairs the cells of the bladder. I found a lab near my home that sells packages of 40 sessions for about $1400.

Dr. H called some people to ask them if they thought it might work as she had no experience with it. I have to wait for them to return her calls to hear their assessments and her advice.

Dr. H asked me if the pain was all that bad. I showed her the notebook I keep in my bathroom. Every day I write in it how many times I am there and I rate the pain. More than 50% of my twenty-four visits per day are rated as nines on a scale of ten. Ibuprofen is not a source of relief for such episodic pain.

We discussed my other complaints and concerns. The doctor ordered blood tests and scheduled me for another check-up for a month from now.

In the Infusion Clinic, Clinic J, I saw the phlebotomist and two of my chemotherapy nurses. It felt good to see them without the prospect of another round of chemotherapy.

As I left the hospital I walked a little straighter. My knees are still killing me. My bladder and bowel are fried. I remain fatigued. But I have put some things behind me. I may be haunted at times by the prospect of cancer returning, but no ghosts followed me as I walked the hospital’s floors. I did not hear any news of cancer buddies having lost their battles. There will come a time when every test makes me fearful of a relapse. I may yet feel pressure to undergo that internal radiation. For now, I am content to see a cancer buddy and learn that she is hanging in there. I am relieved to see my medical team without having to undergo anything more stressful than a blood test. When I close my eyes in a few minutes and try to go to sleep, I intend to begin by counting my blessings. Sweet dreams, folks. I’m going to pray for sweet dreams.

My best punch lines are her inspiration. She visited me while I recuperated from radiation and chemotherapy at my mom’s house. I was lying on the den sofa beneath an afghan that was my Grandma F’s. It was in that wavy pattern we used to see after TV went off at night (a far better thing than the all-night infomercial). I felt awful. At the time, I experienced terrible spasms in my urethra throughout the day. I cried freely when these spasms began. In between bouts of this agony I woiuld struggle to focus on my work, my recovery, and my life. Barb came during this time to cheer me up. And she did.

She looked at me, wrapped in my grandma’s afghan with its pink, brown, maroon and fire engine red stripes and said, “Have you ever noticed that every afghan contains at least one scary color?” She shuddered as she pointed to the red stripe.

Barb holds unique views on many aspects of normal life. I will relay more of them in less direct attributions in this blog so that she will continue to share her views with me freely. Barb also is the person who first came to visit me in the hospital when my cancer nightmare began. She is the person who came back when I struggled with recovery. She took me to doctor’s appointments and cried with me when Dr. H told me that I had a 95% or better chance of being alive in five years, rather then the 40% or better chance we had been expecting. She has accompanied me to chemotherapy, radiation, and the dreaded bladder examination.

These days she is opening medical bills and preparing a spreadsheet of expenses to help me assess the “damage” done to my finances by surgery, chemotherapy, radiation, another hospitalization, and other medical treatments.

She calls me nearly every day to share her life. During these past months when I struggled with cancer and its aftermath, she lost her mother and has been settling her mother’s estate. Barb has a narrow frame, but manages to shoulder more than anyone I know.

There are times when the best friend you will ever have can do nothing except listen. I am grateful that Barb will answer the phone when I have worn out my welcome elsewhere. One of her personality traits is that she has mastered the answering of a question with a question. This has been very helpful during appointments with doctors.

Barb is also tough. I recall the time my law firm gave me tickets to a concert at the United Center. Barb and I were in the law firm’s skybox with the daughter of a client. The other woman and her friend were rude. They drank too much and insisted upon singing aloud along with the main act. Barb leaned past me and cast several nasty looks at the other women. Even though I said nothing, the women decided they would rather pick  a fight with me than Barb. The four of us ended up facing off in the women’s restroom. Barb jumped in front of me when it was clear I was the other women’s preferred punching bag. Barb will take on a battle when I would be inclined to walk away. I am not saying I could not have squashed the other two women by sitting on them, but it’s nice to have a friend who would take a punch for you.

Barb once went on a cruise with me and my niece Maureen (my friend Cindy also has shown that kind of bravery). Maureen grew tired of stupid old Aunt Cheryl during that two week plus extra days cruise. But she was happy to tell Barb all about it as soon as I fell asleep. Barb was very patient, telling me only that I should stay awake to hear “Gabigail’s” reports of my early onset dementia. I did not need to do this as Maureen had been leaving out her open journal in which she kept writing: “Aunt Cheryl seems to be having PMS–again!” (In case you’re wondering, Maureen and I have made up after our past squabbles. Indeed, she and her fiance Jutstin came all the way out to Chicago to take me to chemotherapy and radiation after Thanksgiving.)   Barb remained my friend even though Maureen tried her patience. She did manage to get a little “revenge” when we were in a cab for a tour of the island of Mallorca. As we drove along a scenic road at the edge of the island’s cliffs overlooking the sea, Barb whispered to Maureen, “This is the kind of place tourists get robbed and thrown over the cliffs.” Poor Maureen. She blanched at the idea of it. Barb has a wicked sense of humor.

That sense of humor is to be respected–and feared. I will confess that I sometimes fear that Barb will sign me up for a makeover by some show like What Not To Wear. Barb watches all of the style shows. I don’t. Lately my clothing style has been clothes too large or purchased in another decade. It is a credit to Barb that I have yet to appear on such a show. The temptation must be overwhelming at times. My friend Paul keeps hinting he will sign me up for Hoarders even though I have never collected tinfoil, old newspapers, or empty cans. I am an easy target even if most of what I collect are books.

Okay, if Barb is eccentric, then I am more so. It must help to explain why we have  been such good friends for so long. It may explain my relationships with all of my friends!

Barb doesn’t require of her friends devotion to her every whim . Barb loves opera, but she has not suggested that I join her since we saw Amistad together. I wept openly from boredom. She loves running and other exercises and has never been anything but encouraging when I exercise. My exercising is never “pretty.” Indeed, after I spent an entire summer riding a bike, fellow riders would call out to me, “The first day is always the hardest!”

It’s not wise to expect any person to be all you need in life, but it is a wonderful thing to have a friend who embraces your differences as well as your similarities. It makes me wonder why more of us don’t adopt the same strategy at work, in families, or in marriage.

Happy Belated Birthday, Barb. Thanks for being there when I need you–even if it means you have to face my family’s scary afghans!

One of my favorite books is Thomas Moore’s Care of the Soul (Harper Perennial 1994). On its cover, he describes it as “a guide for cultivating depth and sacredness in everyday life.” In it, he discusses that: “‘Soul’ is not a thing, but a quality or a dimension of experiencing life and ourselves. It has to do with depth, value, relatedness, heart, and personal substance.” Id. at 5.

He is a psychotherapist who acknowledges that care of his patients sometimes calls for him to stay his hand rather than take pain away “in the name of health.” Id. Sometimes the condition a patient wishes to end has the capacity for enriching the patient’s life. In particular, he discusses a person who seeks to cut away her dependency upon others because she views it as disempowering. Moore asks whether it might be better to find a way to live with dependency as it also means relatedness: “Don’t you want to be attached to people, learn from them, get close, rely on friendship, get advice from someone you respect, be part of a community where people need each other, find intimacy with someone that is so delicious you can’t live without it?” Id. at 7.

I often go it alone. I like my independence.

I have, these past months, wallowed in a deep pool of community with others. It has been delicious. By opening doors and windows and letting light shine in on my situation, I have seen in that pool’s remarkable depths new lessons for living my life. Moore discusses the value of respecting that which we dislike in ourselves.

My naturapath has offered me various homeopathic remedies for the physical effects of my cancer treatment. Already I can see some small, but encouraging changes in my bodily functions. Moore honors homeopathy in his discussion of healing the soul:

The basic intention in any caring, physical or psychological, is to alleviate suffering. But in relation to the symptom itself, observance means first of all listening and looking carefully at what is being revealed in the suffering. An intent to heal can get in the way of seeing. By doing less, more is accomplished. Observance is homeopathic in its workings rather than allopathic, in the paradoxical way that it befriends a problem rather than making an enemy of it.

Id. at 10.

Moore points to the religious practice of cleansing or sprinkling with water before religious service and notes that we also might benefit from releasing ourselves from “well-intentioned heroism” before we seek to help others. Id.

Perhaps there are several messages in these images of prayer, music, water, and healing. If the fight to eradicate cancer is undertaken in a manner that scorches all that surrounds it, then it may not be healing. Before deciding how to go forward, it may help to cleanse or detoxify with water and other remedies that heal by befriending that which is perceived as the source of imbalance. The value of music and prayer being married for the purpose of healing is as old as time.  Moore comments: “Imagine a medical approach more in tune with art, one that is interested in the symbolic and poetic suggestiveness of a disease or a malfunctioning organ.” Id. at 155. Moore acknowledges we do not have a ready tool for divining the symbolic meaning of every organ or our “body imagery.” Id. at 161. However, he recognizes that music may bridge the gap between the mystery in illness and its healing. Quoting, Moore writes: “Novalis said, ‘Every disease is a musical problem. Its cure, a musical solution. The more rapid and complete the solution, the greater the musical talent of the doctor.’” Id. at 170.

Moore wonders aloud whether illness is a sign of battle between our bodies and something else in our existence. He asks whether it might not be possible to learn something from illness rather than merely focusing on overcoming it.

We could find new, deep value in illness, without masochistically indulging in it. We could risk the battle. In our psychological lives, too, we could hold off our palliatives and our techniques for relieving suffering long enough to find the [mythological] god who has been struck and to reestablish harmony in our relation to that god. Illness offers us a path into the kind of of religion that rises directly from participation in the deepest levels of fate and existence. . . . In a very real sense, we do not cure diseases, they cure us, by restoring our religious participation in life. If the gods appear in our diseases, it follows that our lives may be too secular and in need of such a visitation.

Id. at 167-68.

I find most compelling Moore’s comment on cancer:

Sardello looks at imagery in cancer and concludes that its message is that we live in a world where things have lost their body and therefore their individuality. Our response to this disease could be to abandon the mass culture of plastic reproductions and recover a sensitivity to things of quality and imagination. If we attack nature with our polluting methods of manufacturing, and if we let the quality of life fade in the name of speed and efficiency, then symptoms may arise. In Sardello’s description of disease, our bodies reflect or participate in the world’s body, so that if we harm that outer body, our own bodies will feel the effects. Essentially there is no distinction between the world’s body and the human body.

Id. at 171.

I am only starting to think through the ways in which my cousin Alice’s ukulele and prayer may help me recover from the current situation in which I find myself. I was diagnosed with cancer. Like most people, I sought medical assistance. I had the cancer cut from me within days. I went through weeks of chemotherapy and radiation that attacked healthy and unhealthy cells with extreme toxicity, leaving behind a wasteland that still has me shedding hair, bleeding from three orifices, and, most distressingly at this time, crying in bathrooms at least two dozen times a day. What else are the toxic treatments doing to my body? If cancer is a sign of disharmony that has caused a mythological god to visit me to draw attention to that disharmony, what have I done to address the disharmony, to befriend my cancer for the purpose of finding what it represents and repairing that condition by repairing something else in my life? If medicine and music have at their core an understanding that life and art have tonalities and harmonies that improve each, have I listened for the dissonance that my ill-health represents? Now that I am undertaking homeopathic remedies, am I drawing closer to remedying not only what is at odds with my body but also my soul?

Already cancer has made me a better person. I have learned so much from others with cancer that I feel enriched even as the cancer has depleted me. Catherine Ingram wrote in Passionate Presence (Gotham Books 2003):

What is known as realization is merely feeling this immaculate presence here and now, realizing or being fully cognizant of the ordinary miracle of just being. This needs no attainment since it is already occurrimg. It requires no special circumstances, no life epiphanies, no meritorious preparations. It is fully present each moment of our lives. It stays fresh and innocent despite our sorrows, regrets, and whatever damages or failures we feel we have sustained. No suffering or transgressions have marred it, just as no exalted deeds have enhanced it. Countless thoughts and experiences have come and gone, and none of them have adhered.

Id. at xix.

As soon as I wrote these words I recalled that I needed to do something with the countless rolls of toilet paper in my home. A friend is in town. This evening, Roberta and her friend will come to visit me. I am not up to doing as much cleaning as I would like, but, back in December, I called Peapod and ordered some items to help me get through those last weeks of treatment. I intended to order some toilet paper, but somehow had delivered about 240 rolls of toilet paper. I kept them because, at the time, my problem was that I had a problem with elimination. Fluids ran out of me freely all day long, sometimes every ten minutes. Now my problem is that everything that comes out of me comes out painfully, about every hour. When the naturapath asked me about acupuncture, I told her that I had it once. It was painful. The doctor said that he had never seen a more toxic person. Is this the realization I’ve been searching for? It takes a lot of toilet paper to clear out major toxicity. Already I have stuffed several packages of toilet paper into the front hall closet. The rest sits out as a reminder that I ordered too much of it. I am going to get up from my chair in a minute and stuff the remaining packages of Angel Soft toilet paper in the front hall closet. I believe there is also a huge package of Bounty paper towels there as well. If there is a message in this abundance of toilet paper, perhaps I have just come to realize it. I am going to reflect on Alice’s musical prayer, the acupuncture doctor’s diagnosis, the body’s suffering, and my wealth of toilet paper and paper towels, and see if I cannot come up with a prescription for making peace, rather than war, with my body.

Universe, hear my friends’ prayers and music. Help me find peace with my body and my life. Universe, I am listening.

I recently underwent a procedure during which a urologist inserted a camera into the bladder and looked around. Then he filled the bladder with water, which water he withdrew for testing. The test revealed no abnormalities consistent with finding cancer there.

I have been trying to speak with the urologist ever since he left me a message to that effect. I wanted to know when I could expect the pain to abate. I continued to bleed and wondered when I could expect the bleeding to stop.

We finally spoke this morning and the news was not happy.

I have what I now understand to be a permanent condition called radiation cystitis. In layman’s terms, the bladder has been fried. In time, pain may abate for periods of time. However, it can and, more likely than not, will return. Pain and bleeding are commonplace. My pain management options–the orange pills that I found made my condition impossibly more painful in December or the astonishingly expensive and unhelpful Vesicare that we tried in January or the always recommended ibuprofen–are the treatments. That orange medicine was a pernicious little “poison.” When the pharmacist saw that I was to take it for a month, he was stunned. Perhaps not familiar with cancer treatment, he said the drug usually was not administered for more than a couple of days. The Vesicare’s sticker price caused sticker shock. The ibuprofen is not suited to addressing episodic pain.

There is a 60% chance of reducing bleeding if I take about 30 treatments in a hyperbaric chamber. No such chamber is available at my hospital, and I would have to pay for it myself. It would not address pain. (Paul has made the very gallant offer to help me pay for that treatment if I want it. Dear Lord, thank you for the friends you have sent me. I do not intend to accept his offer, but I am moved deeply by his impulse and his caring.) There is a 30% chance of some improvement if some formations in the bladder are “shaved” off during an invasive procedure some find painful, which would not be offered at this stage in my recovery even if I fancied another invasive procedure, which I do not.

Live with it, is the best advice for now.

I inquired as to whether internal radiation, which I currently am resisting, could make this worse. The radiation oncologist would have to answer that question and dosing could affect his judgment. The urologist could only speculate that the frying (my word choice) has been so thorough that it might make no difference at all. I see the oncologist, Dr. H, on February 27th. I have not gone to see the radiation oncologist since his department sent me to the ER in late December. That is the doctor who used hand gestures to explain the consequences of radiation. When I looked confused at his pointing to his crotch and hips, he explained he was not used to patients with my level of education.

I will be discussing this with my naturapath first. Rather than do nothing, I would like to think that I might find some way to manage my pain, short of daily medication, if not cure my condition. This was not happy news, but, as my doctors so frequently maintain, the alternative to action is cancer. That argument has induced me to do many things that may yet prevent a return of cancer. With time has come much wisdom. I think daily of the statement my father used (comedically) when we whined as kids: “Come over here, and I’ll give you something to cry about!”

Who seeks a steaming hot mustard plaster to address a bad cold any longer? How about a good bloodletting to address anemia? The field of medicine has come far, but, at its edges, it remains a field like world exploration before the discovery of the Americas. You set sail with hope and courage, but, in the back of your mind, there is a possibility that the world will prove flat and you will neither arrive at your intended destination nor return home. We set sail anyway, don’t we?

The nature of man can be to risk all to succeed. I pray that I have done so and not undergone so much pain and injury for naught. Speaking of prayers, anyone so inclined is welcome to pray for the abatement of pain. I already have begun yet another entreaty for spiritual intervention. So far, God has heard your many prayers and helped me through some very tough times. I pray now for the strength to “take” the medicine I asked for and doctors prescribed.

The hair on my lower torso was quick to jump ship. Two lone hairs remained on one leg until this month. My underarms were bare soon afterward. Even the five or six tiny hairs that once grew on the tops of my big toes have been gone for a long time. I can work with that.

Those pesky hairs on the upper lip and chin disappeared–except the white ones that can grow too long. They hung on for much longer, contributing to my feeling that cancer aged me. I shaved them off.

Then came the arm hairs. One morning I washed in the shower and noted their persistence. I was alarmed that night to see that every last one of them was gone in the same day.

In recent weeks I have noticed that I am down to a few eyelashes. I can work with that. I use an eyebrow pencil to fill in bald patches in my eyebrows.

My hair on my head has thinned very gradually. There were no bald patches. I can work with that. I washed it once a week no matter how much I longed to keep it cleaner. I fed it vitamins and selenium. I combed it gently once a day. I ignored the widening part on my left side and in the back–symbols of the more substantial “parting” to come. I watched as the gray hairs fell first, a phenomenon that I thought of as “God’s gentle touch-up.”

At one point I cut an inch off of my bob because the ends looked scraggly. This week I cut my hair to about one inch, a little longer on the right side of my part. It’s not an attractive cut. When I awaken, my hair is standing up and I look like I have survived a bout with cancer or like my hairdresser lacks a license (I do not have a license to cut hair).

I first tried the red wig. My hair is dishwater blonde, sometimes light brown. It has not been color treated since August. In my home, under gentle lighting, I loved the fire. I recently heard that red heads get more sex than blondes, challenging the notion that blondes have more fun. I am not interested in their fun, but their bold coloring seemed so much more encouraging than any familiar hair color. I longed to display that spirit as I faced my life’s most serious challenge to date (cancer, not hair loss). It is a Raquel Welch wig. I like the way it is made. It fits fine. The style is sassy. My hair is straight and fine. This wig has waves and looks tossed by a gentle breeze. This is the most fun that I have had since my cancer diagnosis. I feel brave in it. I look different.

When I got to school on Thursday night and saw it under the bathroom’s stark white bulbs, I thought of Lucille Ball and was worried. I resolved to enjoy it anyway. I never chose it to resemble me. I chose it because I am changing and, after months of feeling like a caterpillar with tufts of hair (gray, then blonde, then brown), I longed for some of the butterfly’s beauty, even if I had to borrow it.

Students were kind. I think most people are kind. One fellow cancer survivor even told me about a procedure by which eyelashes are attached to the eyelid even if you have no lashes of your own. I won’t be pursuing that procedure, but it is good to know that there are ways to handle losses any individual finds hard to bear.

I tried the blonde wig with red highlights on Friday. It is an asymmetrical bob. On one side the hair comes down in a long curl a la Nicki Minaj. The long curl is too much for everyday wear. I want to clip it off, but wore it anyway because a bold bird preens over its colorful feathers. This wig never quite sat correctly on my head. It rode up in the back, producing that conehead effect some wigs have. The long curl tickled my chin like Rip Van Winkle’s beard. My law students urged me not to clip it. One students suggested a color like pink. Candy colors are so cheerful.

As soon as I returned to my car, I dragged off the wig and ignored my own misgivings about the remnants of my hair. Hair is not much different than clothing after a couple of days spent in a wig. My hair is comfortable, like sweat pants or pajamas. It does not matter to me that it looks so foreign. It is still my hair. Moreover, as my hair has fallen out, I have had an opportunity to pluck so many of its strands from coats, sweaters, blouses, and pillows, that I feel like I have said goodbye to it more than a thousand times. I am long, long, long past crying as we bid each other farewell.

What remains is like me, I guess. It is stubborn. It stays even when it is no longer welcome. I may cut it down to size, but cannot “bare” to shave it off. The truth is that, while my hair is not the important loss it is for many other women, it is me, too. It remains welcome even as I shed parts of me that I no longer want (cancer) or need (chin hairs).

I would not be honest if I did not admit that I tied on a wool neck scarf before picking up a sandwich at a drive-thru on my way home. The scarf reminded me of a babushka (a friend said that term is out-of-date, I should call it a do-rag). It was better than the sight of my hair, which shot up in a million, make that a thousand, make that a dozen, oh, maybe just five directions. Change can be difficult. I have changed in many ways that have caused more tears than this change.

Like the other changes, I intend to handle this one with courage and a little smile. Smile with me and it will be fine. As I said before, I think most people are kind. I can work with that.

An author answered questions about her recent book (my apologies, I missed her name or book title as I joined the interview after it began). A caller asked why his wife and daughter loved the smell of Mexican papaya while he hated the smell. He reported that he had read somewhere that many others hated the smell, too.

The author responded that smells were perceived based on the differences between our life experiences with the thing smelled and age or sensitivity. If I have had a bad experience eating papaya, then I may never again care for the smell of it. Alternatively, I may have more sensitive receptors of a particular scent, which may affect my perception of a smell as good or bad. Over time, the receptors in each of us are likely to dull. The author speculated that this was not merely a phenomenon relating to smell.

In the case of dulled receptors, she speculated that one’s receptors might lose strength over time because, as we age, we lose interest in rejecting smells and become indifferent to them. She likened this to weakening as we approach death. We may fight a thing when young and give up the battle as we age. She offered one caveat. If a person faces repeated exposure to something unpleasant, then, over the course of a lifetime or a career, one’s distatste could grow.

As an example, a police officer who investigates deaths might grow more disgusted by the smell of death (or sight of it) over a career.

Her other comment was that we become accepting of a disgusting odor if it is in the family. Thus, I might gag while changing a baby’s diaper but find the diapers of a family member tolerable. Another caller from the health industry said that, in her experience, there were people who drew the line at mouth care, upper body smells, lower body smells, but seldom all of them. The author allowed that an individual could be more sensitive to some smells than others even if exposed to them constantly.

One possible interpretation of the foregoing is that the author reports on a field for which no reliable data exists. Why else might one offer so many conflicting explanations for the phenomenon?

I prefer the first explanation. I dislike the way I smell today because I attribute the change to physical changes when the changes are the unhappy results of my disliking the physical changes made to my body by radiation and chemotherapy. I really would not care to think that I smell badly and always will.

I would not care to think that I will perceive myself as smelling worse as I grow older. If one dislikes the smell of papaya, there must be nothing worse than an old papaya. It might be a comfort to think that older men will find me more appealing, except that I hate the thought that anyone would stand upwind of me to avoid gagging until he grew to like me.

No one currently has as his or her job the regular exposure to me. However, it would be interesting to determine whether those who dislike me also dislike my smell. It sounds like a natural defense against a predator–like a skunk’s musky odor released in times of danger. What might my new odor repel? I would like to know.

Of course I am comforted by the thought that family and friends will find me acceptable no matter how rank my odor because of their familiarity with me. I would like to think that anyone who loves me will find me tolerable even if I have changed in respects that I could not control. They already put up with many of my least attractive characteristics. As the author intimated that other senses are subject to similar perception, this would suggest that familiarity breeds tolerance, rather than contempt. I am reminded of when my father’s mother was in a nursing home. My aunt and I, along with a caregiver I hired, took certain nights to visit Grandma K at dinner time. Before we left, we helped Grandma into a nightgown and tucked her into bed. She did not like to sit in her wheelchair before a TV in a public area. She wanted her dinner, her nightie, a Meltaway Mint, her own TV, and a hug or kiss.

On many occasions, I wiped my grandma’s bottom after helping her to and from the commode. She was uncomfortable with this because she hated the thought of imposing on me–until I told her that it was my honor to wipe the royal bottom. She laughed. I know she understood that I loved her so much that nothing about her could disgust me. Nevertheless, there was a day in August, just prior to her October death, when she threw up in my lap. I saw the look on her face. She was mortified. I was not disgusted. But she lost her will to live in the weeks following that event. I started to visit every day, trying to encourage her to live. Each day she grew weaker until she ceased to communicate. I kept visiting. I saw her the night before she died and, even then, she was dear to me in ways I cannot explain–in ways I need not explain to anyone who has watched a loved one die. There really must be something to that notion that treasured family and friends are always dear. Even if I cannot accept the changes in me because of their negative associations with cancer treatment, I hope that those who matter most will always love me (and pretty much everything about me) like I loved my grandma.

I would like to think that, as time passes, I will love myself enough to lose my own distaste for the new me.

That is, perhaps, the greatest gift accorded by a loved one–tolerance of one’s loved ones even if they begin to smell like a bad papaya.

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

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

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

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

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

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

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

My nose still bleeds every day.

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

My gums bleed if I brush hard or floss.

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

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

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

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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

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

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

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

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

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

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

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

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

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

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

A half hour later I made the return trip. It was painful to climb back into bed. At one point, I was on my back dragging my body up to the top of the bed. I looked out into the darkened hallway and was surprised to meet the eyes of Nurse E2. She had watched without offering any assistance. “You need to learn how to do things for yourself,” she said.

“What do you know?” I said it softly, sarcastically.

Later that night, Nurse E2 and I tangled over my morphine. I could have it every four hours. It barely took the edge off of my pain. We disagreed over how long four hours were. I marked the time on my hospital room clock, which was wrong. I have no idea what manner of time mechanism she used. I waited six hours for morphine. I was ready to chew off a leg and crawl away. When I told Nurse E2 that my pain meds were overdue she said my last dose was three hours ago. I pointed to the clock and said, “My last dose was when it said it was one. It now says it is five.”

“That clock is wrong,” she said.

“But four hours are still four hours,” I said.

She shook her head. “Not on that clock. You’re getting too dependent on pain meds.”

I had to white knuckle it until Nurse O came in and checked the records. Merry Christmas.

My family and many of my friends called me that day. I had been prepared to spend the day alone even before I went to the hospital. I was not expecting the calls. They got me through a tough day. However, I was a little too vocal about my experiences with Nurse E. That night I asked him to change my I.V. line because I had hurt my wrist dragging myself up into the bed. As he taped the port into place, he said, “Now don’t be telling your friends I didn’t know what to do.”

I pushed my luck. “Could you find me some petroleum jelly? My lips are cracking. I’ve been putting Country Crock on them, but it’s not helping.”

He left, returned, and said there was none to be found. Bah humbug!

That night something happened on my floor that made the rest of the night very uncomfortable. A patient started yelling at nurses. They yelled at him. Then they started yelling at each other. Even though I felt severe pain I waited for Nurse E2 to come with pain meds, rather than calling for her. The vibe on the floor was so negative I was afraid to attract attention to myself.

I suffered consistently more painful cramps in my urethra. The burnt flesh, now pierced by a catheter, clamped on the catheter spasmodically. The pain was frightening. I prayed incessantly. I clutched at the bed rails. I cried. I shook with chills. I dug my heels into the mattress until the soles of my feet cramped. I begged for help from my nurses. They dutifully ran to call a doctor to request more pain meds. Their efforts and my cries were unavailing.

My next nurse proved much more capable than most. Her voice was sunny like island music. Her eyes showed sympathy. She found me standing by my bed, afraid to climb in. “What’s wrong?”

I explained that, once I was in bed, I would have painful cramps and feel trapped in my bed.

“What hurts?” she asked.

I showed her the raw red skin on my hips and backside. I explained about my internal radiation injuries and their reaction with my catheter.

“Hold on,” she scurried off. She returned with a tube of paste that formed a barrier between wounds and the world. She spun me around and spread some of this paste on my raw skin. It felt cool. “How about getting into bed?” she asked.

“I’m afraid of the pain. Maybe I can walk through it.”

“No, no,” she responded. “Sorry about this,” she said. Then she spun me around and gently pushed me onto the edge of the bed. “Let me take care of you.” She tucked me into bed and used pillows to take the pressure off of my wounded flesh. She called the doctor for more pain meds and, when none were available for another hour, she requested a muscle relaxant.

It was the only night that I slept. The dreams were strange. I thought that I had been hijacked by aliens. At one point–in reality or in my dreams–I was begging to be left behind. That did not happen again. Pain remained my constant companion until my release.

A doctor came to take his own blood samples for identifying my infection. He did not usually do this to a person lying on her back in a bed. I ended up with blood in my hair and bedding. It was no big deal. I wanted the infection identified and cured so I could leave.

Dominique came to visit me. She brought me a comb and brush, lotion, and lip salve. I needed them. My hair had started to come out in tufts. It was filled with sweat and chemo salts. After several days of fevered suffering, my hair rose in Medusa-like, odd bumps and twists. Dominique was there long enough to observe me writhing through a long, painful set of spasms. Dominique had brought with her a bio feedback tool that she used on me during my cramps. I think it helped. I think her presence made the staff more responsive to my pain. The nurse set up an I.V. of potassium and magnesium to reduce cramping. After Dominique left, I slept for two hours. It was good to sleep.

The rest of the night was not nearly so restful. I suffered a bout of diarrhea that took my breath away. I was eating meals that were on a tray higher than my head. I ate mashed potatoes, applesauce, grits, anything that stayed in a spoon. I could not cut meat so did not eat it.

Nurse E2 let me know that I was wasteful of supplies like toilet paper. When I ran out of toilet paper, she brought me a handful and told me to “make it last.” I had a bloody nose every day. I had diarrhea. I cried. When I ran out of paper towels she brought me an unopened pack, left them atop the soiled clothes holder. They were out of reach. It was a nightmare.

I was tested by fire in so many ways and for so long that, not surprisingly, I went up in flames. I kept telling myself to be positive and grateful, but it was getting harder to do that.

Nurse O came on duty at seven in the morning. It took awhile for her to get her patients in order. Once she did, I received some of the best care I would receive during my stay. She tidied my room, changed my sheets, located toilet paper, examined the radiation wounds on my left hip and dressed them, called for more pain medication, and located a toothbrush and toothpaste for me.

The doctors made their rounds. A resident or other young doctor presented my case to two colleagues and an attending physician. The attending wore a gown, mask, and gloves. He said little, once taking my hands in his and bowing over me several times while saying, I think, “My dear lady, my dear lady.” Blood culture tests would be taken to identify my specific infection. The infection had spread from the urinary tract to my blood. I would continue receiving a broad spectrum antibiotic by I.V. I could have morphine periodically. I would have a CAT scan to rule out causes of urinary tract pain other than infection.

The CAT scan took place. Other than that, I suffered concurrently from diarrhea and passing blood clots in my urine.

Nurse O left at 3 p.m. and Nurse E came on for the second shift. He was distracted. Coworkers would call his name over and over. He was slow to answer the call button. He had much to say about being away from his family on Christmas Eve. He seemed helpless when I informed him that my pain had risen from seven on a scale of ten to nine on that scale. The blood clots I was forcing to pass through my urinary tract were larger, more painful. At some point in the early evening I stopped urinating. The pain ratcheted up. I began to howl with pain. Nurse E shut the door to my room and ignored my pain for a couple of hours.

Nothing could have been worse for my mental health. I felt abandoned.

To his credit, Nurse E eventually tried reaching my doctors for help. He got little support. It was later in the 3 p.m.-11 p.m. shift when he returned to suggest a catheter. I wanted it. The pressure in my bladder had reached a feverish level. I panted like a woman in labor. I prayed in incomprehensible bursts punctuated by frantic tears.

Nurse E tried to insert a Foley catheter in my tormented urethra twice. He was unsuccessful. I was over the top in the pain scale of one to ten. To his credit, Nurse E left and went to find a much more experienced nurse. Nurse S and Nurse E spread my legs like they were breaking a turkey’s wishbone. They greased the rubber catheter. They got to business.

While I struggled (and failed) not to shriek with rising panic, someone tried to deliver a dinner tray. He was told to stay out. He kept asking, “Does she want the tray or not?”

I screamed, “No, I don’t want the tray!” The catheter went in and about 1000 ml. of bloody urine shot out, enough to half fill the catheter bag. I was unable to sit after that. The pain was terrible, like I was a worm on a sharp fish hook. There was not enough morphine to take the edge off.

As the nurses left, I rested flat on my back, the I.V. carrying liquids in, the catheter carrying liquids out, and my bowel still reacting to chemotherapy.

Life was so miserable that I tried to watch midnight mass on TV to remind myself about the season. It was not on any channel. That seemed strange. I had been in the hospital two days and was only just learning that my clock was off by more than an hour. I was completely disoriented.

It would get worse. This was, after all, only the frying pan, not the fire.