Not Down Or Out

It could be worse. I might not be laughing.

Tag: cancer buddies

I Can Hear You Now

One of the several lingering effects of chemotherapy appears to be tinnitus. Tinnitus is that ringing or buzzing in the ears that some suffer for various reasons. My tinnitus began back when I was in treatment for uterine cancer at the end of 2011 or beginning of 2012.

I did not have the benefit of a huge medical team as I went through treatment. I did not have medical insurance and relied on the county’s medical services. I remain so very grateful for the county’s care that I will state up front that tinnitus has seemed a small matter by comparison with cancer.

No one has ever explained to me what causes my tinnitus or how I might treat it. Ever since the enactment of what people call Obamacare, I have had insurance I pay for without receipt of subsidies. I pay for a gold plan because I know how expensive life-saving care is. But I seldom have used my bought-and-paid-for insurance because, after I pay the high premiums and the deductibles and co-pays, medical care remains very expensive. I have had a more expensive safety net, not an affordable source of ongoing healthcare.

So I have worked on acquiring my substitute for qualified healthcare. I read online sites and try to reason my way through conflicting, incomplete, sometimes advertiser-generated, and often anecdotal information. It has suggested that chemotherapy may have damaged the hairs in my ears that assist with hearing. That damage may have caused or contributed to causing my tinnitus. Do not take my word for it. It is a theory.

I take a Biotin supplement that includes Silica and Collagen. I know. Some will say supplements are unnecessary if your diet is nutritionally adequate. Overweight people often have nutritional excesses. There is no way to judge the purity and efficacy of supplements across the marketplace. What I know is that the hair on my head, my eyebrows, my eyelashes, even the unwelcome hairs on my chin, are all thriving. Just this week someone who has not seen me in years was asking what was with the hair. It is brown, shows very little silver for one who is 58, is thicker than ever, and it is wavy. Once again, I am relying on “sign reasoning” instead of double blind tests conducted by scientists.

Still my ears ring. Sometimes it is a din. Sometimes it is a buzz. I never work or relax in a silent place. Because the “sound” is distracting, I often play a radio, turn on the TV, or run a fan to mask it in part. Nevertheless, it is never absent.

A couple of weeks ago my mom and I traveled east by car from Chicago to visit family. We picked a day in which each of the states through which we passed experienced rain. I’m not talking about wet road conditions. I was thinking Ghostbusters (1984) rain. From its script:

Dr. Peter Venkman: Human sacrifice, dogs and cats living together… mass hysteria!

For most of the four to five hours it took to cross Ohio we had trouble seeing the taillights of the cars and trucks ahead of us. It goes without saying that there was road work. The big rigs traveling on the other side of the road were in what turned into a channel formed by cement walls on either side. The water collected. As they drove past our car they sent up waves of water that slapped the windshield. Mom and I flinched each time that happened.

Road conditions improved in Pennsylvania, but the weather did not. I kept going. We did not stop for lunch because neither one of us could handle the mad dash from the car to the service stop buildings.

I turned on the car’s radio from time to time, but we never did find a station with weather reports. I would let the radio roam through the few available stations and then shut the radio off. My mom was silent except for the occasional breath caught in fear and released with a sigh when the rain eased a bit in its ferocity or a truck moved a safe distance or the windshield wipers cleared our view for a moment. I was very conscious of my tinnitus during that long drive.

While we pressed on through Pennsylvania, I located a station that was broadcasting the daily rosary. Sponsored by the Knights of Columbus Bellevue Council #1400, someone led us through a rosary addressing the Sorrowful Mysteries. I left it on and we prayed along with the priest and the others present at the recording of the event.

Shortly after the rosary ended I shut the radio off. The rain slowed down. And the tinnitus stopped.

I started to cry because it was so quiet. I cannot explain how peaceful it felt to have the noise stop. I seldom complain about it. It’s not cancer, is it? I have handled many more scary situations. It is not painful. It is not employment discrimination. It is not isolating. It is part of the soundtrack of a busy life. There are a million other things that occupy my mind on most days. I cope with it. It bothers me most at the end of the day. I lie in bed and try to clear my mind. That is when it seems most loud. Sometimes I turn on a “sound machine” that plays crashing waves or a babbling brook or rain. But that is not silence. Most nights I turn on a fan and an air cleaner. But that is not silence.

I say my prayers of gratefulness for family and friends, health and hope, talents and opportunities. I fall asleep focusing on what I have and not what I need. I am blessed, not burdened in my earthly life. I still have the little scraps of paper on which I listed my blessings and my angels on October 6, 2011, when I could not sleep on the night before my hysterectomy. I know what they say.

I pray for the people I know and some I don’t. I pray every night for the souls of the departed. I spend a lot of nights focused on the special intentions of my mom, sister, brother, and their families. I pray for friends and students who face challenges, whether large or small. I pray every night for Mike Terrill and his family and so many other brave and kind people I have met here on WordPress during my cancer treatment and recovery. Somehow those prayers make my mind quiet even if I can still hear that ringing in my ears. But let’s be honest about my prayers–I’ve been doing most of the talking.

That’s why the trip through Pennsylvania was different. This was silence. I kept wiping my eyes because it was so wonder-full.

I did some more reading online and found some reports of tinnitus reduced or abated following fast descents. Maybe the mountainous roads of Pennsylvania helped. But, in the same way I put stock in my supplements, I am putting some stock in the possibility that prayer has found for me another way to silence the din.

The tinnitus has come back. In the week after it stopped, it faded in and out. It did not stop completely during the trip home, even though we passed through Pennsylvania’s mountains on a cloudy and dry day. It continues without change today.

My mom gave me a rosary recently. This past week the old friend who commented on my changed hairdo gave me a rosary she bought for me long ago in Medjugorje, the site of many unconfirmed miracles.

I pray, but I am not one who often says the rosary. I think that might be changing.

I am sending a check today to the Knights of Columbus of Bellevue, Pa. so that they can continue broadcasting the daily rosary. And, Lord, I am listening. Whether or not prayer will stop tinnitus, I cannot say. I can still hear the tinnitus, but I think I can hear something that will help me cope with it now, too. Lord, I think I can hear You now.

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.

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