Not Down Or Out

It could be worse. I might not be laughing.

Month: December, 2011

Petri Dish

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

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

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

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

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

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

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

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

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

Burnt Toast

I finished my last week of scheduled treatment on Thursday, December 22nd. It was not a day for celebration.  It was a day for shedding tears.

On Monday of that week I began to suffer increasing pain from my radiation treatments. I passed blood clots each time I urinated. Some of these clots were large. Imagine how they passed through a finely burnt urethra. Have you passed a kidney stone? Imagine numerous of them attempting to pass all at the same time. I waited until noon to go for radiation. From the time I woke until I went to the hospital I slept in a tangle of blankets and battled a strong case of the chills. There was no fever, just a deeply felt sense of shock at having to face a last week of treatment.

I told the radiation nurse about my experience, but did not receive much assistance. I was directed to a handout that said some patients passed blood and pus. That last image nearly killed me.  Was it possible that I was suffering a light case of radiation burns? I could not imagine things worsening. Long after each episode I was still panting with the pain.

On Tuesday I was back for radiation at 5 a.m. At about 6:30 a.m. an officer strolled into the hospital waiting area and ordered the patients who sat there to move on. He said the hospital didn’t need a bunch of sick people hanging around. When someone pointed out that the Fantus Clinic could not yet be reached from the hospital, the officer countered that people could walk outside, cross a street, and enter the building for the clinic. Of course, if they had waited fifteen more minutes they might have walked to the clinic by underground tunnel without exposure to the winter elements.  The same officer ran off another group by directing them to join the lines for elevators that do not operate until 7 a.m. I have never seen any officer behave so coldly or insensitively. When he approached our radiation contingent, the officer focused on Mr. M, an older gentleman who is always first in line for radiation. Mr. M wore the same camouflage gear and a knit cap every day. He would check in then sleep in his car until it got close to 7 a.m. At that point, he would wait with the rest of us. He looked a little scruffy until you knew him. Once you knew him, you understood that he bore his pain in every wrinkle in his face, every fold of his clothing, and every shudder of his body.

When the officer asked why Mr. M was not moving along, I answered, “We’re radiation patients who must wait here until 6:55 a.m.” The officer looked at me. I was careful not to sound overly aggressive. He backed down and walked away. The rest of us looked at each other in disbelief. We were not homeless. We were patients. And, had we been homeless, we also would have been in need of compassion rather than aggressive challenge.

After my radiation session, I inquired about internal radiation. I learned that, contrary to every prior indication, I would not be scheduled for internal radiation during the week between Christmas and New Year’s Day.  I was devastated at the prospect of stretching out my suffering. I was distressed at the idea that I might have a conflict with my work schedule. The nurse seemed disinclined to further discuss the matter with me.

I asked the nurse to see if I could be accommodated even as I feared what another week of treatment might do to my suffering body. She said she would have to speak with me another day. This has to be one of the most frustrating aspects of treatment. On the one hand, I am expected to support myself, which means work. On the other hand, I am expected to spend as many as eight hours in a day getting treatment. I do not qualify yet for free care. I will be expected to pay for some portion of my care if I do qualify for charitable payment of a portion of my bills. But I cannot make plans because information is not available until the last minute. Once I realized that I was getting nowhere, I went for a blood test. The pain was nearly intolerable at that point. I still did not have a pain medication. I tried paging my oncologist. She never answered.

Barb picked me up at about 4 a.m. for my final chemotherapy session on Wednesday, December 21st. By that time I had determined that the Tylenol did not ease my pain. I had spent the night trying the sitz bath, the handheld showerhead, a cool compress, and fitful napping. Before I left my home I took a digital photo of my toilet after I passed several large blood clots. If my words were failing me, perhaps it would help to try another approach to obtaining care.

We were the second to arrive at the hospital for radiation. When we were admitted, Barb went to sign me in for chemo. I went to radiation. I showed the photo to the radiation nurse, who suddenly understood my anxiety and terror. The nurse had arranged for me to have my internal radiation right after Christmas. I would spend three to four days in the hospital. A catheter would be inserted in my urethra. A second would be inserted vaginally. I would be kept in bed for most of the week. This description did not resemble comments about the procedure that were offered in the past.

She convinced the doctor to prescribe Tylenol3 with codeine. However, the dose was two-thirds of what it was following surgery and I found my symptoms far worse than my post-surgery pain. Moreover, following surgery, I also received morphine, Vicodin, and ibuprofen 3–at the same time. When I pressed for more relief, there was reluctance to kill pain because of concern I might sell the drugs.

It is disconcerting to place so much trust in doctors who do not trust you. How many times have I been asked about recreational use of drugs? I am so conservative on the issue of medication that I find these inquiries humorous. The questioners do not.

After radiation I met up with Barb in the chemo waiting room. Diane was working. She took me in for my session. I had lost more weight. I was sweating uncontrollably at the prospect of treatment. My blood pressure rose to 177/77. Despite my fears, treatment went well. The Benadryl was strong enough to take my urinary tract pain down from a seven on a scale of ten to a five. Diane administered the Taxol slowly. There were no bad reactions–only the lethargic lack of focus I often felt during infusion.

Barb came in several times to observe my treatment. Tom was there as was Joe. I finished around the lunch hour. I spoke briefly to Tom. I ended up writing Joe a note and leaving it beside his elbow as he was asleep during his chemo session. Barb took me home. I later went out for my new prescription. It proved to be too weak to help with my pain. I suffered all night long.

When I tried to go to sleep that night I was frustrated by pain and the sense that I was too weak to finish my treatment. I felt burnt to the toes. My treatment for a cancer we hope has been removed during surgery has proven worse than the cancer.

You Can’t Get There From Here

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Power of Prayer

It’s week five and I am still hanging in there. My brother Danny came up from Texas to take me to chemo and radiation. We left the house at about 4 a.m. and drove downtown. The last time he took me to such sessions, I was still waiting in the long line for the elevator at 7 a.m. Now, with inside info obtained from my cancer buddies, we went to the information desk and were assigned a number for radiation and received passes that got us into a special elevator five minutes ahead of the crowd. At 6:55 a.m. I was number two for radiation. When we hit the elevators I went to radiation and Danny went to sign me in for chemo. I was number two for both treatments. 

Radiation came first this week. I was the first to be treated on the machine to which I am assigned. I was done at 7:30 a.m. Then I joined Danny in the chemo lab to wait for my session. My nurse was absent again–forced to use or lose vacation days. This time I was assigned to Melba, who called me at about 10 a.m. for my 8 a.m. appointment. We went back. She weighed me–down six pounds. Nothing much tastes good any longer. I plan my calories and spread them out over five to six small meals. 

The first order of business was clean-up. I noticed that the floor was wet. An entire bag of IV solution had leaked all over the floor. Melba can’t just call for maintenance help. She had to mop up the liter of liquid with paper towels, then scrub and begin with me. Even when you try to streamline the process you end up waiting. 

The department was short two nurses. Melba sat me next to Cherry’s group of patients as Cherry had treated me in week four and knew about my drug reactions. We started with the Benadryl, which left me loopy. Then she started the Taxol at 50 ml./hour–no reaction. We built to 450 ml./hour without any adverse reactions–so much better than my usual experience.  

Near the end of my Taxol dosage, when I was feeling tired and was in pain from side-effects of radiation, Cherry seated Joe next to me. Joe has lung cancer and COPD. It turns out he is also a country singer and songwriter. We had spoken in the morning about his life. He is divorced, unemployed (he also worked as a Metra train line walker, which means he walked the tracks all day), and lives with his dog Puddles. Puddles is a Pekingnese. He had a second dog, but the dog recently died shortly after having been struck by a car. The driver nearly did not stop after sending the dog flying. When Joe stopped her, the driver said, “What did you expect me to do? It’s just a dog.” Joe admitted that it was karma when the same driver was involved in a car accident in the same neighborhood and her car burned. He is not a forgiving man. His description of the woman included some language I don’t use.  If you’ve ever opened your family to include a pet, then you may understand his feelings. 

Joe is the same patient who coached me through last week’s adverse reaction to Taxol and who flagged down the nurse for me.  

He sings well. I know because he and another chemo patient had a singing “smackdown.” The other patient has been in the waiting room with me in the past. She is loud, obnoxious, and appears to have some drug issues. Her nose runs like a kid’s. She shows up late for chemo then aggressively demands that “someone” give her their seat. I did give her my seat back when I was new to this and feeling much stronger. In week five I ignored her demand. She tried to take the seat beside me while one of my cancer buddies was standing at the clerk’s desk to sign a consent form. The buddy’s belongings were on the seat, but this patient was about to dump them on the floor when I said, “The chair is taken.” I said it authoritatively. She backed down. My cancer buddy professed she was ready to fight “that bitch for it.” We avoided that rumble. 

Back in the chemo room the same woman was loud and bossy. Joe told her “to stop eating the paint chips because the purple chips do not taste like grapes.” The woman did not get the joke. He then told her to “let go of the crack pipe when it gets hot enough to burn your fingers.” She missed the implication. When she kept up with her complaints, Joe sang a Hank Williams tune. The Benadryl keeps me from recalling the words, but there was a challenge there. When Joe finished, the woman broke out with a song that called for peace and acceptance. Joe responded with an Elvis tune and a hard look. She gave him back a rap song about loving your enemy. She sang it earnestly then raised her eyebrow and stared at him. This went on for several exchanges. Their voices were different. Their choices of songs reflected different musical taste; yet there was something happening on both sides of the room. 

The bystanders, including our nurses, were reacting with applause to each new salvo. It ended when everyone had gone silent to listen. Joe and the other patient seemed aware of what they had in common–rich voices and deep catalogues of remembered songs. They also both had cancer. They had resolved their dispute with a method that squeezed out the vitriol and left everyone floating on a haze of good will. There was some grudging respect for someone with a contrary view. Some of us engage in this battle with grace and humor, some with anger and grit–all of us are doing the best we can. 

I finished my Carboplatin dose without incident. 

Danny took me to my apartment and installed for me a handheld showerhead. My oncologist has recommended spraying burnt parts five to six times a day with lukewarm water. I need some kind of relief from radiation burns–internal and external. The external burns are odd spots of red, raw skin. In another lifetime I’d be carrying on about them. Now the pain is ignored. The internal pain is much worse. This week it is the urinary tract that reduces me to tears numerous times a day. I feel like I have been cast in the movie Saw. I am the only one who doesn’t know it’s a movie. Each time I head for the bathroom I imagine I hear the saw, smell the blood, and taste the fear. I wonder if I will live through the pain I am about to endure. Survival may be desirable, but what happens in the bathroom is traumatic. I will never want to go through this again even though I can survive it.  

Today, December 17th I finished my last class before the holidays using the power of prayer. It was the worst day yet, but somehow I did not cry in agony. I did not end class early. I did my best to fulfill my obligations to others. My sister, her entire family, and my friends–they prayed for me to finish and I did. I am sincere when I say that, absent their prayers, I am certain I would have gone home early. I could barely sit for most of the day. When I sat, it felt like things inside of me had splintered. When things came out of me they pierced and rent and burned. But I did what I said I would–thanks to strength drawn from prayer. 

Faith is faith. I am a lawyer, trained in argumentation. I cannot prove the existence of God. But I know that the thought of Him is a source of immeasurable comfort. And, even if I turn out to be wrong, there is a God that got me through this ordeal. A real God or something like a placebo . . . does it matter if I am comforted by my beliefs? I think He is real and He is. A power greater than my own has delivered me from a trial I do not think I could weather alone. I did not imagine Him alone. I did not make Him. I needed my sister Kathy, my nieces Maureen and Lisa, my brother-in-law Jeff, my mom, my friend Barb and everyone else who prayed for me to give me the strength to get through the day. Does it matter that He manifests through others? I don’t think so.  

I’m thinking of the woman at the hospital whose rent was paid for three months by a stranger while she cared for her mom who had cancer. I once walked into a religious gift store and bought a pen with an inscription on it that said God was there. I gave it to the firm’s receptionist. I don’t know why, but her eyes teared up when I gave it to her. She was waiting for a message. On Friday I spoke with Tom. Last week he went on dialysis. His doctor said he had signed his own death sentence. Tom recovered. He no longer needs dialysis. The doctor said this never happens. Is it a miracle? If he thinks so, does it matter? 

I have four more external radiation sessions, two days of internal radiation, and one chemo session to go. I started this process believing I could do anything for six weeks. I have gotten through this so far because of the power of prayer. My own will has needed the infusion of others’ will to carry on. I am going to call it a miracle. If you challenge me, then I will sing a verse of Amazing Grace. Have you ever heard me sing? Better to give in now. This faith rings true even to my tone deaf ears.

Ungerdog!

When he was very young, my brother Danny loved to watch the cartoon Underdog. Like many boys with a hero, Danny would tie a hand towel around his neck and initiate his hero transformation by shouting, “Ungerdog.” Although we have sometimes had more sibling strife than fellowship, he is still my Ungerdog. He will fly in from Texas this week to once again drive me to chemo and radiation. That is a good brother, don’t you think?

He has to live in Texas while his wife Lisa stays here in Chicago because that’s where his job has taken him and this is no time to try to sell their home in the Chicago area. This is hard on both of them, but they do what they have to in this tough economy. Once they are able to make their move, we will miss them mightily. He will have to be in Texas for the upcoming holiday. It will not be the same without his good humor. I feel bad that I am going to take him from his wife for the day. I’m sure there are many things on his wife Lisa’s “Honey Do” list, but she has also been very supportive during these trying days in my life.

She sends me silly emails and very kind and concerned ones. She has called to see how I am doing. She has checked in on Mom when Mom’s gout was acting up. She told me to take selenium before I started chemo and radiation to save my hair. I still have my hair in week four of treatment.

My sister Kathy is saying a Novena and a rosary every day for me. She has powerful mojo. I think the Lord listens to her because she listens to Him. All I know for sure is that there have been days in these past couple of weeks when Kathy, her husband Jeff, their daughters Lisa and Maureen, and even their grandchildren Ryan and Rachel were all praying for me. I managed to get through some trying times due to God’s kindness. I know Kathy got me that help. She is a channel for kindness and grace. She is also the captain of my campaign to have the law school recognize the inequity done when it terminated my teaching in October.

My niece, Maureen and her fiance Justin drove out from Maryland to take me to chemo and radiation. Maureen sends me emails regularly.

My cousins have been sending me wonderful emails and have called me. Susie, with whom I share some kind of psychic connection, calls regularly and listens to every detail of my experience. My cousins Michael, Alice, Pam, and Pam’s daughter Courtney have lent their support. My aunt and her friend Bernie pray for me all of the time. My Aunt Arlene, who is engaged in a multi-year battle of her own against cancer that has recurred, has taken time to write to me to encourage me to keep my spirits up even as she prepares for more courses of chemo.

I have had some inspiring help from friends. Barb has been my chief source of emotional support through some dark days starting with my first day in the hospital. She plans to take me to my last chemo session next week. When I call her and I am anxious or afraid, she keeps me cool. Dominique took me to chemo last week. She has offered me the various types of alternative, complementary care that I am not getting at the hospital at which I am treated. Roberta sends me the craziest cards to keep me positive. She calls regularly to chat. Mary has been amazing. She paid for a housekeeper to keep my place clean. She gets on the Internet to find me new approaches to some of the taxing side-effects of my treatment. We talk about every other day about how it is going. She may be far away, but she is only a call away when I need her. I get peppy messages from Sue and Cindy and Kim and Cody. Michael has ideas for my future. He’s certain it will be bright. Paul has plans to visit some time this year to see how I’m doing. Jessica has lent her support to my dispute with the law school.

My friend Paul has a wonderful mom. Gladys recently sent me a card in which she said that she was praying for me but also for my mom. Gladys thinks it must be very hard for a mother to watch a child experience cancer. I think Gladys is right. Gladys also called to check on me while she was out of town. Who does that? A special person.

I have former students who have taken up my issues with the law school and university. Karen, Matt, Ayesha, Nathaliya, Kim (and Kim’s mom and several of her friends), Alexia, Geeta, Jesse, Joy, and Millie are just a few of the students who have supported me during these difficult times.

Some very nice supervisors have continued to support my decision to go on teaching at Roosevelt and DePaul’s paralegal programs. I am very grateful for their confidence in me.

My current students have been very supportive, too. Last Thursday several students stayed after class to ask how I was doing. One of them said that it was a good thing I wanted to go on teaching because the class would not have wanted to miss having me teach them. On Saturday students asked if there was anything they could do to help. Imagine that–as if they don’t already have full plates with work, school, and family obligations. Several of the students from my online class have learned of my condition and have sent me very kind notes of encouragement.  My Tuesday class asks me how I am doing and has thanked me for coming back after my surgery. On my first day back at school one of my students walked me out to my car at nine in the evening. I was feeling very good, but she wanted to be sure I was okay to drive back to the city so late. Many of the students who were in my fall law school class got together to send me a card even after they were assigned to other classes and might have felt that I let them down.

These excellent people are the reason I teach. They are bright, hard-working, and kind. I hope they know that I wish them the best and have done my best to help them achieve it.

My path has so far been trying, but I am confident that in another two weeks I will begin to heal.

When that happens I will still be a changed person. My experiences have humbled me. I have faced fears I never before contemplated. I have taken on challenges I never expected to face in this life. I have asked for help to overcome obstacles and have been blessed by others’ generosity. I have surrendered my suffering to God and known His grace. I have waited for hours and hours for medical care I cannot afford and have witnessed the dignity and courage of people from many different walks of life who have never known a time in their lives when it was any different. I have shared my path with many people who were strangers to me, people whose life challenges I cannot fully appreciate, and have observed their dignity and experienced their kindness. I am not going to suggest that having cancer will turn out to be one of the best things to happen to me in my life, but there is no question, even now when the days are grim and my health falters, but that I will be a better person because of my experiences. I only hope that I can pay forward the many kindnesses done for me by so many.

I am reminded that my brother’s childhood hero was Ungerdog–mild mannered, generous, kind to his fellow man. These are qualities I hope will survive the crucible in which I now live. That is a worthy result for so many people’s assistance.

Crispy Cancer Critter

Wednesday, December 7th was week four of chemo/radiation. My internal organs are the consistency of steaming hot, crispy bacon. I scream when I eliminate. It is grim. Each time I think it cannot get worse it does. I really was smug to think I could fly through this treatment because I started out feeling so well after surgery. Never having had a serious illness I had no reference point for pain. I do now.

I rode the elevator with a stranger who asked me, “How did the chemo session work out last week?” I was puzzled. I had no idea who the man was. He continued, “My wife and I caught your act in the chemo lab last week when you wanted to change your chemo date from Thursday to Wednesday. We thought you were brilliant.” I smiled uncertainly and said, “My nurse fit me in for Wednesday.” The man said, “If it hasn’t already occurred to you to go to law school, you should. My wife and I think you’d be a great lawyer.” I smiled. He went on, “You really laid a guilt trip on those people. It was fantastic.”

I saw my doctor this week. She basically told me to suck it up–the pain, the other side-effects, everything. She shot down various suggestions from cancer books I’ve read giving me logical reasons for not trying the approaches. It’s the price of prevention. But the first thing she said was, “Why do you still have hair?” All three doctors commented that Caucasian women lose their hair immediately. I was thinking that my wig had not arrived yet. My hair cannot fall out until I have my wig. I’ll have to send a photo when I have it. It’s going to be red with blonde highlights because what is the point of a wig that looks like your hair? I do not have a plan B. There is the short Farrah Fawcett wig from when I sold Bernard’s wigs in college (but I haven’t found it yet in my storage room). There is a baseball cap (but I already have the mistaken reputation for being the first lesbian prof at school). I could cut my hair off (my friend Michael says he digs bald chicks).

Dominique took me to my appointment. She picked me up at 6 a.m. and dropped me off at my place a little after 5 p.m. It was a very long day. I really appreciated the support. We got to the hospital and waited in the line for the elevators (if I gave tours of the hospital this would be part of the tour as people are stunned to see the police directing people like they expect a riot). Then we went to the chemo lab where it was too crowded for patients to sit and the staff were yelling that guests should give seats to patients. There still were not enough seats. Like me, Dominique was stunned to see young people there. It doesn’t seem like a young woman or man’s disease, but it is.

My nurse was not working so I ended up waiting a long time. I sent Dominique off to the cafeteria. I was seated in a chemo chair at about 10 a.m. Cherry (yes, her name is Cherry and I own every book of the Cherry Ames Nurse series) was handling my appointment. She was very kind. She urged me into a comfy recliner and tried to get me under a blanket, but I explained that I intended to sit on the edge of my chair in case I had to leap up to flag her down due to a reaction to Taxol. She asked me to tell her about my allergy. She brought over the pharmacist. She called my doctor. We went ahead with her primed to react if I had an attack.

The Benadryl was like a college frat party with an unlimited budget for booze. When Dominique came up to check on me I told her I was feeling “loopy.” Then we started the Taxol and I could not breathe. My hands and joints ached. I had the start of that shockingly painful back reaction–the one that feels like I’ve been hit by a truck.

Cherry jumped up to shut off the chemo. She gave me a shot of Benadryl fed into my chemo line. Wow! Talk about intoxication. I was having trouble doing anything. But she was good. She got to me in time. She called the doctor. They discussed strategy. There is a possibility I will be moved to Taxol’s sister drug next week, but Cherry wanted a chance to try getting the Taxol into me because it has such a good record for helping cancer patients. I agreed to try. So we waited awhile while she pumped plain saline into me. Then she lowered the speed of administration from 700 ml/hr to 100. We tried that for an hour. No reaction. She upped the speed after an hour to 200. No reaction. Another half hour later she tried 300. We eventually finished at about 2:45 at 500. I was just starting to feel the allergy symptoms. We switched to the Carboplatin. I finished that in thirty minutes. She removed the needle without making me bleed and bruise like crazy (my blood is quite thin now).

During the session, Dominique came up several times to check on me, which was nice. And I was surrounded by my new cancer friends. There was Tom. He has brain cancer. Dominique thinks he has a thing for me. I think he’s just one of those gentlemen that it’s hard to find anymore. We first met on day one of chemo and radiation. He held doors open for me. He was at a crisis point Wednesday. He has been drinking and smoking. He has not been eating or drinking enough fluid. His kidneys are now in trouble. He has to go on dialysis. The doctor shut the screen, but I was seated facing Tom and right next to that curtain. Tom was honest about the problem. Radiation required the removal of all of his teeth before he started. Radiation to the head crumbles your teeth so they must be pulled before that can happen. Chemo and radiation attack the lining of the mouth and throat. He is very nauseated. He did not think his doctor cared. He has few joys in life left other than an occasional drink or cigarette. But he apparently refused to give a blood test sample, delaying discovery of the kidney failure. I could see both sides. When the doctor left to find him a bed for the night, Tom stormed to the bathroom, then stormed back. He forgot to plug his I.V. stand into the wall. I eventually pointed that out. Cherry offered him a sandwich and juice. He declined. The doctor said, “Eat it! That’s an order.” Tom threw it down but later put on his dark glasses, smiled at me, and ate it. Then he left the crusts and pieces of the insides of the sandwich on a napkin and refused to reach over and discard them in the trash. Very childish, I know. The doctor was right when he said, “I can’t save your life if you don’t help me, and you may have already signed your death certificate on this one.” Who, going through this, isn’t thinking that it might be easier to chuck it in?

I also saw Wanda again. We started treatment the same day. We had the same type of cancer as I had. But she had surgery in April and has already had a recurrence of cancer. She skipped about three radiation sessions after having some emergency dental work. The nurse and doctor said that she also skipped last week’s chemo session. Wanda was blase’ about the whole thing. There was a woman who arrived for chemo and could not be treated because she was jaundiced. When asked if she noticed that her face and eyes were yellow, she seemed surprised as did her daughter. I felt bad for her. She sat there for two hours while they discussed what to do for her. Another woman was there for chemo that she gets once every three weeks. She was to have it again at the end of December but wanted to put it off until the end of January. It took an hour for her to understand that she needed to be more serious about treatment.

There is a man that I see every day at radiation who has stage three to four lung cancer and COPD. He likes to say that if he’d known he was going to live this long he’d have been nicer to his body. He was sitting behind me and cheered me on as I fought my reactions to Taxol, “You can do it, Cheryl. You’re tough!” He called out to the nurse when I could not breathe enough to get out a yell.

Yesterday I sat next to a woman I’ve seen in radiation. She’s about forty and has two tumors in her lower intestine and rectum. She’s had a colostomy. They are trying to shrink her tumors before removing the intestine and rectum. She has very long hair. It’s her pride. We talked about losing our hair. She hopes hers will grow back fast. She has had a tough life. That hair is important to her. She seems more concerned about it than the cancer.

This week I met an Asian man and his mom. She had breast cancer. He is taking FMLA leave to bring her to treatments and his leave is running out. We talked about rides by the American Cancer Society, but he fears his mom could get lost or confused when dropped off. I wanted to offer to watch her a few of the days of the week when we both have radiation, but I’m getting fatigued, too. I didn’t want to let them down. So I explained about how you can get to the hospital between 5 and 6 a.m. and get a number for radiation and have a chance of getting out before 8 a.m. They hope to try that.

So I have my new cancer friends, my family, and my long-time friends getting me through this challenge.

When I finished chemo I was exhausted, edgy, and in some pain from the residual effects of the treatment. Dominique and I headed down to radiation, where I would turn out to be the last patient of the day. Dominique went with me into the “gowned seating area” and waited with me for my session to start. She was surprised, too, by the mess, the weird lighting (sort of pinky fluorescent bulbs), and the strangeness of men and women mixed together.

When I was done, I had to use the bathroom. She shuddered, but it looked pretty good by the hospital’s standards. She did think the staff had seemed very nice. I have two more chemo doses, ten more external radiation treatments, and forty-eight hours of internal radiation to go. This treatment will end while I am on winter break from teaching. It will finish before the start of the new year. Dominique picked me up at 6 p.m. and I got home at about 5:15 p.m. That was my longest day yet.

I now think of myself as a crispy cancer critter. This has tested me sorely. I have trouble remembering how good I felt until recently. Each day I am in painful contact with my body. I think it was Roberta who said that I must feel like my body has betrayed me. Actually, I feel like maybe I betrayed it. We aren’t nearly so comfortable with each other as we used to be. My blood pressure Tuesday was 126/73. On Wednesday it was 172/77 as I faced chemo and my fears about it. My cholesterol and urine have been pronounced perfect. I don’t have diabetes. I still have my hair. But it hurts to sit, to lie down, to move. My nose bleeds every day for a little while.

My boss at the DePaul paralegal program said, “I never thought I’d have to say you look tired, but you look tired.” I reminded him it was then week three of chemo and radiation. He said, “Cheryl, I’m so sorry. I forgot you had cancer. That was so insensitive of me.” I kind of liked having someone forget.

My mom scolded me a bit Tuesday when I showed up at her house to take a two-hour nap (on the couch because I only gave in once on sleeping on the bed) before my 6-9 p.m. class in Naperville. I was wearing what I will forever think of as my “cancer sweater” instead of a coat. I told her that it was important to me to still be tough about something. I had tears in my eyes as I said it. But I do want to be tough. It’s going to help me get through this. It got me up at 4 a.m. today to go back for more radiation. I have seventeen more papers to grade before my 6-9 p.m. class tonight in the Loop. Being tough has me teaching four classes a week. My online class will end this week. I don’t meet many cancer patients who work at all. They are on leave or disability. Being tough means I cooked a chicken Monday and made little packets of meat and force myself to eat it with rice so I won’t have kidney problems. I drank a bottle of Pedialyte this week to help keep up my potassium (yuck!). I have my care package of crackers, peppermints, and granola thins with peanut butter and my thermos of water that I carry everywhere. My care package even has toilet seat covers for times when the hospital bathrooms make me unwilling to back up next to a dirty toilet. I may find it tough to say any longer that I can do anything for six weeks, but I can do this one breath, one hour, one day at a time. And I would like to be a cancer survivor who makes it past that five-year mark.

I may be a crispy cancer critter, but I’m hanging in there.

Doing Battle with the “Grim”

Wednesday, November 30th was the start of week three of chemo and radiation. It was a roller coaster ride in an unpleasant sense.

Everyone has been warning me that week three of chemo and radiation is bad. I started a little early. Thanksgiving was the day after my last chemo session. I was feeling pretty good. Mom and I went out for dinner with Danny, Lisa, Aunt Joan, Bernie, Gail, Al, and John. It was very nice.

I went home the next day and rested. I felt tired but otherwise okay. Later that night I started suffering gastronomically. Without getting too graphic, let’s say I ran to the bathroom about twenty-six times between bedtime and the next afternoon. Saturday to Sunday and Sunday to Monday were just as grim. I was feeling like some normally trusty equipment had turned inside out. I read every cancer pamphlet I had without finding any tips that made a difference.

On Monday I went back for more radiation. The doctor put me on Imodium, which worked, but not before I was exhausted and fried.

My niece Maureen and her fiancé Justin drove from Maryland to Chicago with their dog Koemi. They arrived Monday morning and stayed with Mom. They came to take me to my Wednesday treatments.

On Tuesday, I went back for more radiation and blood work. I realized that my chemo date had been changed to Thursday. That was an impossibility for me as I teach 6-9 p.m. Thursdays. I could not imagine a marathon day of treatment followed by a class. I attempted to get the problem fixed when I went for my blood test and was told my choices were to come Thursday or skip this week and delay the completion of my treatment.

I am not prone to crying, but the news hit me hard. I was feeling so frustrated because the clerk kept saying I should have caught the error at the time of my last chemo session. I was so loopy on Benadryl that day that I could never have figured out what day of the week was December 1st. Of course, I did not give in until after I had “emoted” as much as I could. As my friend Mary said, it sounded like the scene from Terms of Endearment when the mom wants the nurse to give her daughter morphine for the pain. Sometimes things feel so urgent that it is not possible to stand back and reflect. Everything is immediate. I find it hard to plan. I want what I want now—a little childish.

My nurse came out and I asked her if there was any way to resolve this issue. She agreed to squeeze me in. I was so grateful. I was certain a crisis had been averted.

That night I taught my Naperville class and ended up at Mom’s for the night so that Maureen and Justin could drive me into the city the next morning. I wanted to leave at 6 a.m. as there is a line that forms in the hospital lobby for riding up the elevator to the chemo clinic at 7 a.m. It’s first-come, first-served at the hospital as everyone’s appointment is scheduled for 8 a.m. and the signs say that you should be there an hour early for “you” [sic] appointment.

Neither Maureen nor Justin is a morning person.

I was up at 5 a.m. Maureen and Justin got up, but it was a production. Koemi would not use Mom’s backyard for her “business.” She prefers to go for a walk. So Maureen took her for a brisk walk in the icy morning air. Then there was the warming of the leftovers from the previous night’s dinner. Lemon chicken and rigatoni. Then there was the mixing of the protein drinks the two carry with them. At 5:57 a.m. Maureen decided to take a shower. I had not yet seen Justin. Maureen made him an English muffin. She went up to dress.

I went out to start the car. Considering all of the hoopla, we did pretty well. We were on the road at 6:10 a.m.

At the hospital we said good-bye at the elevators. Maureen and Justin went off to sightsee. I headed for chemo.

As usual, the waiting area was stuffed. It’s an eclectic group. There are a group of knitters. One woman is beautiful and wears exquisite garments, many of which are hand-knitted. She has a circular scarf, sort of a cowl, that I keep admiring. Two of the women are chemo patients. They have made their own caps to cover hairless heads. The caps are beautiful. The women choose a corner and compare projects while they wait.

Then there are the “married men.” They may not be the only married men in the room, but several have their wives with them. The wives carry grocery bags filled with food, water, ice, meds, sweaters–anything they can think of to care for the men in their lives. Sometimes there is a daughter along and the pair of women hovers.

The clerk keeps announcing that chairs are for patients and others should stand. Even that does not open enough chairs for patients. The wives and daughters will take the man’s seat every time he gets up to sign papers or get a hospital wristband. As soon as he returns they hop up and get him settled. The women find themselves propped against the few bare walls around the room. One crook of a man’s finger, and the women rush forward with water or a snack.

The “married women” don’t have the water and food. But there are several men who are quite attentive. The men don’t care that they should stand so more patients can sit. They sit next to their wives and the women rest their heads on their husbands’ shoulders. These don’t strike me as being very demonstrative men, but it is very touching to see them supporting their wives in this way. You can tell that it makes their wives feel better.

There are many more women than men and more of them are alone than accompanied. Some of them are extremely fragile. You don’t see many bald men, but there are many women wearing wigs, hats, or scarves. Many are very thin. Some have wheelchairs or walkers with a seat. It’s cold this week. Even wrapped in long coats, their feet shod in heavy boots, their heads covered with hats, these women look frail enough to fly away if they walk outdoors.

It’s disturbing how many young men are there. There are four or five men who may be younger than thirty. They dress tough: black leather jackets, low-riding jeans, long chains, and work boots. There are fewer young women, but one must have thyroid cancer. She wears a neck brace and covers a scar on her throat. Her eyes are the most painful to look at because, when I do, I see a child’s bewilderment. Her son cannot be more than about three years old. She cannot carry him. He looks bewildered, too.

There’s no good time to have cancer, but it feels tragic when I see these young people doing their best to shrug off their surroundings or their situations. I’m not sure why it is, but they never offer their seats to persons older than themselves. They never move down a seat so couples can sit together. There is defiance in the lines of their lips, necks, and shoulders. They tend to sit with feet far apart and elbows out. They plant themselves. Is it bravado? I cannot be sure. Perhaps they understand that they appear tragic and don’t want to let that image define them. Maybe that is how youth survives in every situation. It plants itself. It weathers. It succeeds.

It was a long wait this week. My nurse came out for her first set of patients, saw how far down the list my name was and shook her head at me. I would have to wait for the next “seating.” I was a last minute addition, but, unlike many patients, I had already had my blood tested. Many people do not also have radiation treatments. They have to be tested before they can get chemo. They wait for the phlebotomist. Then they wait for results. Then they wait for chemo. I was not going to wait as long as they would, but I was not going to get in and out quickly.

I ended up waiting until 10 a.m. My wait was long in part because the pharmacy did not have people’s drugs ready. The nurses kept coming out to announce that no drugs had come up yet. I had a book to read, but it was not an environment in which you could relax. People were buzzing with anxiety. The TV was loud. The place was crowded—standing room only. I wanted to doze. I struggled with that feeling.

I’m always waiting these days. I spend most of the time on a basement level. My phone doesn’t work there. I don’t have a smart phone. I can’t use my phone for anything. I read some. I listen to some music if I do not expect to be called for some time. I don’t always enjoy my own thoughts. I tune out completely. I just sit. I cannot say I enjoy it. I just endure it like everything else relating to this cancer.

At 10 a.m. I went back to be weighed. I was assigned to a chemo chair. Mine is a 3-hour appointment so I get a chair with a TV. I can’t watch the TV. It makes me jumpy. There’s always a TV in the waiting rooms. I don’t like the a.m. talk shows. I turned it off. The nurse turned it on. It’s a free drug if you can bring yourself to take it. When she went away I turned it off again.

The treatment starts with the needle. We’ve been using my left hand. She has tried to use the outside of my right forearm, but it never works. I’m not sure why we never try the crook inside my elbow. The nurse stuck me on the back of my left hand about an inch below my thumb. The needle is flexible. It goes in at an angle, almost parallel to my skin. She taped it down and the needle sort of bent. It was uncomfortable. I didn’t complain. I was getting squeezed in after all.

The Benadryl came first. It hit me hard, like I got drunk on an empty stomach. She started the Taxol. I had an allergic reaction. It took awhile to locate my nurse in the crowded room. She shut off the Taxol and gave me more Benadryl. Rock-a-bye, baby. One minute later I was having trouble focusing. The nurse started the Taxol again, but did not connect it to me. A little while later I realized Taxol was running out onto the floor. I could not find my nurse. I think she actually got a break, which I cannot begrudge her. She works non-stop. I flagged another nurse and someone came to clean up the drug. It might have been my nurse. By that time I was too much in the throes of the session to focus. We never finished that bottle of Taxol. We moved on to the Carboplatin. It hurts my hands so I knew when it started. The reactions were still pretty powerful, but I could not find my nurse and so just got through it. I did not get out of there until 2:25 p.m. When it was time to remove the needle from my hand, the tape was so securely stuck to me that the nurse had to tear it off. The needle came out with a “twang.” It was just another reminder that you should be careful what you wish for—in case you get it. I was so determined to stick to my schedule. Maybe a marathon on Thursday would have been better.

Off to radiation. There was no one waiting and the team was not ready for me so I waited awhile. I was still feeling overwhelmed by the drugs. The radiology nurse kept asking me whether someone would be taking me home as I could not drive. I assured her that I had a ride home. It turned out to be a big day for radiation, too. I generally get “zapped” five to six times. That day it was eleven. By the time they finished, I was “done.” You have to have a full bladder. Let’s just say I was embarrassed to leave the table a little light.

As I rushed to the closest bathroom I realized that my hospital gown had become caught in the front. I realized this because a man seated in the waiting area said, “pretty picture.” Of course, He could see some of the huge X’s drawn on me for lining up the radiation session (and some body parts I don’t commonly flash). I am grateful for the Benadryl. The next day I could no longer recall his face. My memory’s failure will spare me embarrassment when we next meet.

Maureen and Justin came to get me. We drove home, had dinner, and Mom managed to get me to lie down on her bed. I slept for two and a half hours. When I awoke everyone else was in bed. Mom was buried in a blanket on the living room couch. It was only nine thirty at night. Mom got into her bed. I went back to the den couch. I survived chemo for week three. In a couple more days I will have finished half of my radiation sessions.

It is the toughest thing I have ever experienced. However, my life’s experiences have been pretty tame. I’ve never been seriously ill before. I never gave birth. My worst pain before all of this was from a dental procedure. I know that my pain is not the worst imaginable. I see people every day with tougher burdens. All I can say is that it has to be endured. Thursday morning I had to get up and go back for more radiation. By that time my urinary tract was so burned by medications and radiation that the week’s painful gastric episodes had faded from immediate memory. I had to take a urine test to rule out an infection before they could give me anything. I got through my Thursday night class by gritting my teeth and sitting gingerly. They have been saying this is when the side-effects start to peak. I fear that the best case scenario is that it’s a plateau that I must walk for three more weeks.

During my Thursday night lecture I drew a blank. I wanted to use the word vowel, but it would not come to me. Even when the students said it I could not say it aloud. The word was gone. It took about five tries before I could say it. I have never had that experience before or since.

This morning I was at the hospital at 5:50 a.m. I was fourth in line for radiation. I needed medication to help deal with the burning in my bladder. I could do anything to get it. The radiation has burned the bladder. The chemo drugs have killed off cells that can’t evacuate soon enough. It is a pain that continues day and night and is not just associated with urination. I feel it from the base of my teeth to my groin. This pain will only get worse in the next three weeks.

I don’t think the men liked it that I was number four in line. There’s a club of men about a decade older than I am. They like to let it all hang out in the changing room where we wait to be called for radiation. I closed my eyes and practiced breathing. I used to make fun of people who had to practice it. I don’t any longer. Sometimes it is very calming to aim for one breath at a time. I can do anything for one more breath.

The nurse told me that she could not recall seeing a more perfect urine test result. I laughingly said, “I’ve always been an overachiever.” She commented on my clean living. I guess . . . .

She got me a prescription. The drug won’t stop the pain. It just helps a little. It turns my urine the same intense orange of an Easter egg dye. And it’s already stained my toilet seat orange. Even the OxyClean bar that hangs in my toilet is orange after a couple of hours. But I have managed to sleep for almost five hours since I returned home from the pharmacy. That is a blessing for which I am profoundly grateful. This is what passes for ecstasy now.

What troubles me most is that we do this to children.

I understand the desire to extend life. I can imagine making the decision to do whatever is necessary to save the life of a child. But I ache at the idea of experiencing this kind of pain for a period longer than six weeks. I shudder as I imagine some of the procedures I will not have to undergo that children with cancer do. Medicine can produce miracles, but the real miracle has to be that the human spirit can survive under this stress. I have known several people who have fought cancer for some period in their lives. I never understood what they faced. I cannot imagine it now. I am currently on a short trek through this disease and I find it all-consuming for most of my day. Their challenges would overwhelm me.

When I have time away from the hospital and work I talk to family and friends. I look at the crazy get well cards my friend Roberta sends me every few days. I remind myself that this is the price I have to pay to achieve that five-year survival goal. I study the hair around the part in my hair for signs of more scalp. I appreciate all of the people who make my day work, even the people who make it tough. I practice breathing. I can do anything for six weeks if I can do anything for one more breath.

Thanksgiving

My brother Danny came in from Dallas to take me to my chemo and radiation appointments in week two. We did not have any idea of how the upcoming holiday might affect our experience. The Infusion Clinic handles blood tests, dialysis, and chemotherapy. It is nearly always standing room only. That day it was sardines in training. It got unpleasantly close. Danny ended up heading for the cafeteria. It was a wise move. Everyone has an 8 a.m. appointment. Usually many of them arrive later in the day. The holiday also means that people who have chemo on Thursdays were asked to come a day early.

The chemo room was packed with people, too. I had the last chair in the corner. I was anxious after the prior week’s allergic reaction to the Taxol. I started with a pack of Benadryl with a double dose. It was overwhelming. In a matter of a few minutes it felt like someone had stuffed me into a Kymaro body shaper. I could breathe, but the lungs did not expand like usual. I was numb from head to toe. I was “loopy.” The Taxol was still a shock to my senses. My hands burned as the drug took hold. I kept rubbing around the injection site. It felt swollen and painful. I wanted to get the drug to move some other place. The nurse set the drip to a slow rate as forcing it into the top of my left hand was so painful. I had an mp3 player with calming tunes. I turned it off after two tracks. I was drifting in a sea of weird sensations that made Josh Groban seem cacophonous. I had a novel. It made no sense to me. There was a little TV to watch. I could not focus on Justin Bieber and Usher singing. I kept thinking they were signing Christmas songs. Is that likely? I am sure they sang. I gummed a cheese sandwich when I started to feel nauseated. I ate a granola bar made for me by one of my students near the end of the session. The nurse was horrified that I was eating so much fiber. I shrugged. The third week is supposed to bring many more side-effects involving the esophagus, stomach, bowel, and bladder. I was still eating the Chia seeds, flax seed, pumpkin seed, cranberry, nut, and raisin bars. That could prove to be the last week that I would feel so strong for awhile.

By the time I finished with the Carboplatin infusion we had been at the hospital for 6+ hours. As it says in the waiting room, all appointments are for 8 a.m., be one hour early for “you” appointment. To be there at seven you need to be in line for the elevators to open at seven. My three hour appointment turned out to be about four and one-half hours because of the delays inherent in the service of a crowded room. At one point someone called to ask if the chemo room could spare a nurse to help in another department. There was much laughter.

Despite the crush of people, there was discussion of people who begin and quit treatment. The woman I met last week, Wanda, told me she managed two appointments last week and one this week. I empathized that an abscessed tooth could be a bigger priority for one day, but was surprised to hear that she took off three days (and a weekend) and was there only because a nurse and a social worker from the American Cancer Society had called to beg her to come back. She had her surgery in April and already has suffered a recurrence of cancer. I cannot imagine that not providing an incentive for action. She is younger than I am and does not appear to be in poor health generally. But she doesn’t regard her health as a priority right now. There are deals to evaluate at a new Ross store in her neighborhood.

People have the right to make their own choices. There is one man waiting for chemo who is accompanied by his wife and two children. They hover around him. My brother is here. Wanda is alone. Does it take a village to survive cancer? Maybe.

Lucky for me the Radiation Room was nearly empty. It was mostly women today and turned into a support group. One woman was completing her last radiation session. Another woman had stayed when her appointment ended to cheer on her friend’s last appointment. A third woman had the same surgery as I did. She still cannot walk without one of those walkers that doubles as a chair. When she heard the date of my surgery, she could not hide her envy for my quick recovery. She cannot stand up straight yet. It must be the German farmer blood on both sides of my family. It might be Dr. D’s surgical prowess. One woman reported to the head of housekeeping the deplorable mess in the changing rooms and bathroom. When that produced no effort to straighten things up, she called the department of health. It was a day for female power. When a lone man who joined the group was called back for his radiation, he shot out of there as fast as he could. I managed to get out after one and one-half hours. We hit the highway before holiday rush hour had gotten going.

I took a nap for a couple of hours after dinner and now cannot get back to sleep. I am one-third of the way through chemo. So far so good. Have a happy Thanksgiving!

Campaign Against Cancer Begins

I started chemo and radiation November 16th. The chemo was difficult, but so far, no after-effects. It started with Benadryl as the toxins can cause an allergic reaction. My nurse thought she had found a vein, but it was a muscle, so my arm had a tennis-ball-sized lump on it before I could flag her down and get her to stop pumping in the fluid. That actually hurt more the next day than the second injection site.

The second injection was in my left hand. The Benadryl went in first. Then they administered Taxol. It is serious stuff. I have read that if a drop gets on your skin it will blister it. As you might imagine, watching them start the drip causes people with my sort of wild imagination to picture lethal injection. And my imagination did not play tricks. A couple of minutes into a two and one-half hour process my face was beet red. It was swelling. My airway was shrinking. I was tethered to a cart and my nurse was with someone else. They had made Barb sit somewhere else. It’s like an assembly line of chairs and IV stands. So no one was paying attention until I grabbed the nurse’s shirt to get her attention.

They shut off the drip and administered another bag of Benadryl. The nurse said, “Are you having back pains?” I said no and then boom, it felt like I’d been hit by a car. My back was on fire with pain. But the extra shot of Benadryl did the trick. And good thing because someone else had the same problem and for whatever reason wasn’t helped as fast as I was. He ended up in a bed on oxygen.

It helped that a tiny Indian woman who sat across from me started talking to me about nothing in particular. She just babbled until I focused on her and she kept it up until the danger was over. She has inoperable cancer that can only be treated with chemo and had lots of tips. Maybe if I hadn’t been so chock full of Benadryl I could remember some of them. I was really spaced out.

After that, nothing could faze me. I felt all kinds of unpleasant tingles in my hands, sometimes close to burning. Then there was an element of numbness, like when you are very, very cold. I was so glad to hear the alarm go off when that drug was done, but then there was a second drug, Carboplatin. It accentuated the tingling and the numbness, but it felt more like an irritant. I wanted to rub around the injection site, but you can’t do that.

I had a cheese sandwich with me. Just plain American cheese. But I ended up eating it in the last hour or so of a five-hour process. I think it settled my stomach.

Then I went to radiation. It’s not an environment for the soft-hearted. The nurses are into tough love and no one remembers your name or explains much. My doctor for radiation explained the initial side-effect of skin burns by putting one hand on his hip and then grabbing his crotch. I guess that at the county hospital he does not get many patients who prefer him to use his words rather than mime.

On Monday, I had gone through a simulation of radiation that involved CAT scans to identify targets and anatomical landmarks. It was difficult. They tape your feet to a Styrofoam block. They position you and keep you in that position for one-half hour. You have to have a full bladder so it gets nerve-wracking. People touch you without warning, sometimes in very personal places. Then they tattooed me so they could find their coordinates. I started radiation Wednesday after chemo and will go every day. Between chemo and radiation, Barb and I were at the hospital for about nine hours. I have a lingering headache today and some body aches, but nothing compared to what has come before them.

It sounds like both procedures get grim in week three and stay that way for up to twenty-one days after my six weeks of treatment. So February is when things will look up quite a bit.

I am resolved to remain positive. But I have already spent enough time in the company of cancer patients to know that I will never be the same person again. On Monday a woman died in her family member’s lap while I waited for radiation. I had offered the family member my seat so she could have the wheelchair beside her. I was watching when the patient’s eyes rolled back in her head and she just puddled down to the floor while this young woman tried to hold her. I have assisted people in pain after they have returned to the dressing area after radiation. Lying on your back and being still so long makes pains and aches worse. I cannot look away when I see someone crying and in need of help. Some others have stopped doing that. They just stare at the TV and pretend it is not happening. I understand them better, too.

It’s not all sadness though. It does not matter that the men have prostate cancer or lung cancer or brain cancer. When a woman–any woman–comes out of the dressing room in her ill-fitting hospital gown, their heads swivel to get a better look. As I walked to my radiation room yesterday one man called out, “There goes the one with the good-lookin’ fat legs.”

What Viagra can no longer assist still “springs” eternal after a glimpse of a hip with an X tattooed on it or a bra strap or a bare leg.

Yesterday I met a man who has brain cancer from drinking and smoking. He told me all about his attempts to quit both habits. He also insisted ladies go first when we entered chemo and later for radiation–even though it was first-come first-served and he had waited longer. He checked me out, too, but a little more politely. I do not recommend this as a place to make a pick-up, but some of the people are chatty. I am one of the few Caucasians there, so people ask me lots of questions trying to figure out why I’m there. I was already a bleeding heart liberal, but this is a place that is filled with souls in need of kindness. I may never be able to turn down a call from the American Cancer Society again.

On the job front, many friends wrote to the dean of the law school. My sister alone has mailed loads of letters to Knights of Columbus posts and churches asking for people to support my case. The dean finally called me. But he didn’t care much. He says my supervisor got some bad advice. Three professors approved the decision to reassign my students–the dean insists it was not a termination because I asked them to pay me and I’m welcome back. One of those three professors founded and supervises a clinic to help the disabled protect their rights. Another was management counsel on labor matters including before the EEOC. I have told the dean we can settle the matter if I am offered a full-time job. He says he has no intention of hiring a full-time faculty member this year. I told him I would teach part-time and work in career services the other time if he made it a full-time job.

He told me to wait until spring when I’m back teaching to come see him to talk more. I told him that I don’t trust the school and have insisted we talk the week after Thanksgiving.

Had they let me teach my class, I’d be finishing that week–before the crucial third week of chemo and radiation.

I do not think I will pursue the matter further until treatment is over. The war against cancer has begun. That is the fight I must win before pursuing other battles.

 

Getting Down to Business

My doctor and I decided that I would undergo six weeks of chemotherapy and radiation simultaneously. This treatment was recommended to kill any cancer cells in my system following my hysterectomy. Radiation is a localized treatment. It will focus on the pelvic area and will strongly affect the bladder and bowel. Chemotherapy attacks rapidly growing cells throughout the body. Cancer cells grow rapidly. Unfortunately, so do many other cells, including those in hair follicles, the mouth, and digestive tract.

Both treatments kill healthy cells as well as cancer cells. You have to hope that the healthy cells will regrow and that the only casualties will be the cancer cells. The truth is that many of the reports I read on the Internet reference long-term conditions that have resulted from treatment, some of them are secondary cancers.

The alternative is to avoid treatment and hope for no recurrence of cancer. I did not want to find myself feeling guilty for having spared myself treatment only to risk my life.

The radiation I was to undergo, as I understood it when I began treatment, was to be entirely external beam radiation. Like undergoing an x-ray, I would have x-rays aimed at specific body parts over a period of time. It has since been explained to me that I will have a final treatment of internal radiation. A catheter (more than one?) will be inserted into my body. I will lie still in a hospital bed and be kept away from people until the treatment is completed. This exposure to radiation will focus on the vaginal area because of the possibility of “cervical involvement.” In fact, the cancer did not reach the cervix and the cervix is gone. Prophylactic treatment is the price you pay for peace of mind. Peace of mind is not what it used to be. The prospect of recurrence weighs more and more heavily on my mind the more I learn about cancer.

I met with a radiology physician who briefly explained to me the procedure. All three radiation physicians have the same last name so my doctor is known by his first initial. I told him that I had watched a simulation on YouTube.com and had done some reading. He stated that he had not much experience with educated patients. This became apparent when he explained that radiation can cause burns in the treated area. He put one hand on his waist and another on his crotch. I was surprised that he did not “use his words.” It was not the last time someone would pantomime.

I had an appointment for preparing me for radiation. I met first with a nurse. She was not the usual nurse for that department. She gave me several handouts and explained the recommended treatment of my skin. Neutral soaps, aloe gel, petroleum jelly–all keys to maintaining skin integrity during treatment. The side-effects sounded uncomfortable but not as daunting as they turned out to be.

On a second appointment I met with a technician who had me disrobe from the waist down and lie on a sheet on a table for a CAT scan that would help the doctors identify the areas to be treated. It was important to have a full bladder for this test. The technician explained that this would push the intestine back, protecting it from some radiation.

I do not like to lie on my back. I am a side sleeper. Just the process of getting onto the table and lying still for a protracted period of time caused discomfort. Looking back, I laugh at the idea that this was discomfort. That was nothing. They asked me to draw up my hospital gown to reveal my body from thighs to just below the chest. A towel was placed over the bottom half of my thighs.

What surprised me was that they placed a styrofoam block between my feet and taped my feet tightly to it. I am spoiled. I have never felt confined before. It was a reminder that radiation was a targeted tool that needed to hit its mark. I had to be very still. Two technicians pushed me from side to side until they had me where they wanted me. I was asked not to try to help them to move me. I understand better now the process, but I felt like a piece of meat being pushed around a griddle.

They exited from the room and proceeded to take images of my pelvis. Every once in a while they would enter the room and move me about. No one spoke to me during the process. By the time they finished, I felt exhausted. They told me to empty my bladder and we would do the whole thing over again. I was nonplussed. The idea of another half hour seemed so draining. Little did I know how easy this stage was.

By the time I returned, the team had decided they had enough images. They took a black pen and made marks on my stomach and hips. These were preliminary markings that would be applied more permanently when I began radiation treatments. It was strange to have strangers write on my body. One technician touched me very intimately to point out what the team would use as a physical landmark for purposes of lining me up. “X” marks the spot. I had gone from a piece of meat to a piece of geography.

I met briefly with a social worker who works for the American Cancer Society. The charity is available to arrange rides to and from treatment. There is a support group. They have little get togethers on Tuesdays when I need to get in and out so I can drive out to Naperville to teach. I have not attended any meetings. There is a selection of wigs on mannequin heads–nothing I would wear. I received a plastic folder filled with information about my cancer. The social worker had copies in several languages. She arranges for people to have their make-up done. Sometimes the group shares a snack to celebrate a holiday. The charity is appreciated by some of the women. Several people gave up their places in the line for radiation on the day before Thanksgiving to join in the festivities. That is saying something because it takes about four hours of waiting to have a twenty to thirty minute radiation session. I would rather go home.

This meeting got me thinking about losing my hair. Truly, it’s not important to my outlook. But bald is bald. I decided I would buy and wear a wig. As I told my friend Michael, “don’t expect me to send any bald photos if I lose my hair. If I don’t choose to wear the short, blonde Farrah Fawcett wig I had to buy the summer I sold wigs at Woodfield Mall, then I’ll wear another one. My last bald Christmas was in 1957 and I have no intention of doing that again!” His answer: “I dig bald chicks!” That made me laugh. I figured I should decide on one early so began looking at wigs online. They have wigs that cost between $500-$1000. I calculated my old commission on wig sales and thought I should have stuck with wigs. But I was looking for something with a shorter shelf life. I focused on a wig in the Raquel Welch line. It doesn’t look anything like me. But isn’t that the point? Nothing is normal anymore. Why not try something different? I ordered one with red hair and gold highlights. Who hasn’t wondered what it would be like to be a “ginger”? Did you know that the English have laws against discrimination against gingers? People don’t like them. I like the idea of being a ginger. Trust my sister-in-law Lisa to ask whether the wig would match the rug down below! No.

Good thing I ordered early because the darn thing still is not here and it’s been about twenty days since I placed my order.

After meeting with the social worker, I was free to go that day, but November 16th we would get down to business. I would begin chemotherapy and radiation.

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