Not Down Or Out

It could be worse. I might not be laughing.

Cancer Buddy Reunion

Today I returned to the hospital for a check-up. I woke at five in the morning because you have to get to the hospital early to get a parking space. I ended up pulling into several before I found one wide enough to allow me to open a car door to get out. Does everyone have to drive a car big enough for a soccer team’s travels?

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.

Scary Afghans

Barb is my most amusing muse and such a dear friend. Tonight we finally celebrated her birthday–more than a month late. It has taken me more than a month to be well enough and for her to be available to celebrate.

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!

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