Not Down Or Out

It could be worse. I might not be laughing.

Month: March, 2012

Thank You, Cook County!

On Monday I was standing in line to apply for CareLink, Cook County’s program for helping people with their medical bills when they are uninsured. It was six thirty and the line wrapped outside of the waiting area into the hospital lobby. My bladder was on a forty-five minute time clock. We waited with our birth certificates, pay stubs and miscellaneous other documents. There was a number on a screen that said the office left off serving applicant 863. The line was so long that I was uncertain how many people were ahead of me. I leaned against the chapel’s outer wall as the clock moved slowly and more people joined the line. I was perspiring. My knees were sore. I wanted to lock them for stability but then felt a little faint. So I leaned. The wall was my friend.

At 7:00 a.m., a manager came out and announced how she wanted to manage us. She would send people who had appointments in to an interior waiting room with yellow slips bearing numbers like those you get when you wait at the grocery store’s deli counter. They had to show their documents to her to reassure her that they were prepared. All of us took out papers to hold in our hands.

People without appointments, like me, would also show her our documents. If we were not ready, she would offer us an appointment for a future date. The next appointment was in May! It was March. As I waited I learned I needed utility bills to verify my address. I had none on me. I decided to wait and make an appointment if necessary. If by some miracle my papers passed muster, then I might get a white slip bearing a number from 864-910. That was how many walk-ins could be taken that day.

I finally made it to the start of the line. I pointed out the omitted utility bills. The woman with the master sergeant voice stared at me. I was one of few people there who looked like me–bald with baby fine hair growing in the wake of chemotherapy. She ushered me to the window where someone was handing out white slips. I was number 903.

I took a seat in the waiting room. Others were not so lucky. I saw many turned away that morning. The atmosphere was tense.  When people were turned away because there were no more white slips the line had wrapped its way down the hall toward the emergency room. Many left rather than wait to arrange an appointment. There were many who needed translation assistance. Those with English language skills tried to explain what was happening in Spanish and other languages. The manager’s impatience was not directed entirely at the people in line. She was LOUD and irritated with her co-workers, too. People spoke quietly so as not to let the many speak over the one with power.

It must be tough to turn away so many, but her authority was unquestioned. I never considered arguing with her if she dismissed me.

There were several young men sleeping on their backpacks in the waiting room. They appeared to have been discharged by the ER during the night. All had fair hair, ruddy coloring, and scraggly facial hair. One had bare legs that were lobster red and swollen. Another young man wore the hospital band. He looked fine to me and the man with the red legs looked in need of care. You never know, do you? The rest of us took seats around them. People were soft-spoken, respectful, patient. Several had bad coughs and others offered them lozenges, as if all of us might fare badly if they were disruptive, and not because we wanted to help. Those who were alone were silent. Those who were in the company of others spoke in hushed tones even after the manager went inside to begin evaluating claims. We were there for a long time. At 8:00 a.m. the number on the board was 868. There was still a good chance that I might be rejected for not having enough proof of my address. I resolved to wait.

Outside it was raining. The day before it had been 80 degrees. Flowering trees were in bloom.

It has been “raining” in the restroom, too. When my bladder could wait no longer I slung my purse and briefcase straps around my neck, clutched my pants to keep the hems from touching puddles of liquid and nests of long black hairs, and crouched over a filthy toilet. There were only two soap dispensers. One was empty. I knew I would feel compelled to strip down and shower as soon as I got home. It was depressing. I expected nothing else.

The mess has been made by people who seemed earnest and sincere. Apparently, none could aim.

As I returned to the waiting area I encountered a man with a beaver hat with its flaps strapped up. He paired this hat with a t-shirt. What was his plan for the day?

At 8:30 a.m. the board said we were up to 871. A man in a purple on purple plaid suit with brown shoes, navy Nike socks, an African tribal scarf, and a Gourmet To Go shopping bag filled with stuff took a seat across from me. He had a black leather baseball cap and a winter jacket, too. He took candy from his well worn shopping bag and tried to give it to children, but the children wouldn’t take it. He told me he hoped that my shoulder would feel better soon. It was painful. I wondered how he knew.

At 10:00 a.m. the number was 883. A baby was screaming. Late arrivals had to be directed to the window at one side of the room. The people who waited for service took turns answering the late arrivals’ unspoken questions. Otherwise they stood there staring at a number dispenser that had no more numbers to dispense and signs that told only part of the story about how to get served.

The man in the purple suit was hitting on a voluptuous teen who sat with her mother. At times he hung over her shoulder staring down the front of her t-shirt. He offered her candy, too. There were other women he hovered near. He kept scurrying back to his shopping bag and drawing out treats to offer them.

I dropped my glasses and he ran to get them for me. I thanked him, but my eye contact was not grateful. His bag was the source of many treats for children and young girls. He offered no candy to me.

The rain stopped. The sun came out. In the waiting room we were frozen in time. The person being served was 892 for a very long time.

I hazarded the restroom again and found it worse. I prayed I would return to the waiting room and find the “line” moving. I returned to find everyone waiting while 892 continued to be served. It was 1:35 p.m.

When the number reached 895 we were allowed to wait in the interior waiting room. A woman sat beside me in a group of three connected chairs. She jiggled her leg until I thought my bladder might fracture and scatter like pearls from a broken necklace.

It was getting close to 3:00 p.m. when Ms. F called 903. I took a seat and offered my I.D., birth certificate, and pay stubs. Even now I blush as I recall my nervousness. I wanted charity. I have never wanted that before.

She entered my medical records number on her computer and invoices started rolling up onto the screen. At one point, Ms. F said, “Twenty-three so far.” She looked at me long and hard. “You have had a bad year, haven’t you, honey?”

Tears filled my eyes at her compassion. I had been watching her for some time. She was a tough woman. She spoke Spanish fluently although it was plainly not her first language. She gave folks a piece of her mind with the lash of a quick tongue when they were slow to respond. She sent people packing if they were unprepared.

I did not look away. I have medical bills well into the six figures from two hospitals. I had imagined I might be paying off these bills the rest of my life, which I hoped would be long. “Just how many jobs do you have?” she asked me.

“Two universities,” I answered.

“And you’re still working?” she asked.

“I have been working all along,” I answered.

She stared at me again.

I felt queasy. Whatever she decided, I would find a way to bear the cost. I was so grateful to be alive. The price would have to be paid.

“Let’s see what we can do about qualifying you for some help, honey.”

She typed. She scanned my documents. She studied her screen. She handed me papers to sign. The last one barely registered with me.

“Where do I sign?” I asked.

“You don’t.” Ms. F smiled a little. “You qualified.”

“God bless you,” I said.

“He always does,” she answered.

According to the form, I qualified for a 100% discount on whatever is covered. I have no idea what that is or means. But I walked back to my car as if someone had removed a six figure tumor from my shoulders.

I know the United States Supreme Court this week considers oral arguments for and against Obama Care. I understand that the Commerce Clause has been used to stop discrimination by intrastate businesses and to stop the growing of wheat by a single farmer. If the burden placed on interstate commerce by discrimination and farming for private use is enough to warrant federal intervention, then it seems a minor difference that the same government order one to buy something to ease a burden on interstate commerce. Nevertheless, people stand outside the courthouse screaming “Obama No” and “Obama Yes.” Have you ever imagined yourself in need of charity? If so, then maybe you can understand why I wish we had a way to make health insurance affordable for everyone.

The day was humbling for me. I have never asked for charity before. I have received scholarships, which are a form of charity. They were awarded for work performed. But I could not figure out a way to handle my medical bills without the county’s help so I asked for charity. I did not demand it. I did not utilize my talents to argue or debate. I was a supplicant. I asked for help.

I am grateful for charity. I will admit that I would be even more grateful to be able to leave that charity on the table for someone else. I spent yet another day in the company of people who seemed just as much (or much more) in need as I was, just as grateful for any help received, and just as deserving of help. But I learned something by asking for help. I learned that I need to ask for help to receive it. I learned that I want to live more than I want to be proud that I can handle anything myself. I need others just like everyone else does. I appreciate the fact that the people who extended charity to me treated me with dignity because it was painful to ask for that charity. I hope that I will be the sort of person who treats others that way when it is I who can extend help to them when they need it.

In the greatest nation in their world shouldn’t everyone be able to get quality healthcare? Thank you, Cook County and all of its citizens for helping me get that care. Thank you for creating a safety net for people in their time of greatest need. Thank you for using that safety net to help me. I will do my best to make the kindness a good investment for you.

What’s a Girl to Do?

Worries about my bladder continue to occupy my mind. It has been three months since I finished radiation. I still suffer from pain and some bleeding. I have suggested to my oncologist that I might benefit from use of a hyperbaric chamber and have located a place that sells packets of visits for a reasonable fee. It feels strange. I would be the “Michael Jackson” of bladder problems. I hear that the King of Pop liked getting into a hyperbaric chamber. Ordinarily, that fact alone might give me reason to decline the treatment. Nevertheless, several Internet sources report that 68-75% of radiation cystitis cases are cured with this treatment. My friend Mary tells me the American Cancer Society recommends it as a treatment for the condition.

My oncologist called several urologists, none of whom seemed to recommend the treatment. They recommended Elmiron, which is like Pepto Bismol for a bladder, but I decided not to take it because it is a blood thinner. I still bleed sometimes. It is not as bad as it used to be. It was horrible. Now it is occasional. I would rather not make the bleeding worse. Moreover, the drug is expensive. It must be taken for several months before it has any effect. I do not like taking medicine. It is not a cure. I would rather save my money for the hyperbaric treatments as they offer the hope of a cure.

What must it be like to be a urologist? One of my friends saw one years ago for a post-pregnancy consultation. She waited in a room filled with male patients. When the nurse called her name and she answered, the nurse said, “Oh, you’re a woman. How nice for doctor!” My friend thought it was funny. I would have found it uncomfortable. I am a tax lawyer. People have found my career choice odd for a long time. I think I would rather be a tax lawyer than a urologist.

I recently found a diet for people with cystitis on the Elmiron website. It advised against eating some foods I enjoy like cranberry juice, yogurt, cantaloupe, store-bought tomatoes, rye or sourdough bread, aspartame, and mayonnaise. I am going to try that diet before I push forward with another treatment.

The oncologist called my radiologist to discuss internal radiation. He did not have a preference for proceeding with that treatment. Even though there was a finding of “cervical involvement” in my cancer pathologist report, he said that I had received a strong dose of radiation, internal radiation would reach my bladder, and he did not want to cause me to lose my bladder. That prospect horrified me. I already was not inclined to have that treatment. Now I am even more reluctant to have more exposure to radiation. He said I received a dose of 4500 cGy. As I understand it, 1 cGy = 1 rad = approximately the radiation dose absorbed in getting a typical CT scan. I think that sounds like a substantial dose, but I found references on the Internet to 8000 cGy dosages over the same five-week period that I received treatment. I intend to give myself a little more time to heal before pressing for more treatment, even beneficial treatment.

One cancer patient who I know can recall a time when she had cystitis. It was so bad that she bent at the waist, used a mirror, and plucked blood clots from her urethra as they emerged due to her straining to pass them. That story nearly made Mary keel over when I told it to her. That sounds like a case as bad as mine was. Today that woman does not suffer from cystitis. Maybe I can heal on my own.

The best news from today’s visit with my doctor was that there were no uterine, bowel or pancreas cancer markers in my blood last month. There are no known markers for bladder cancer, but the urologist has viewed the interior of my bladder and did not see any signs of cancer there either.

I have no other emergent issues at this time. My cholesterol, blood pressure, and hemoglobin are normal–all without medicine. I will not need another examination until May 2012. That is some relief.

I saw Wanda again today. When I saw her last month she still had hair. Today she looked drawn, wore a wig, and reported that she suffered from knee pain and some swelling in her legs and ankles. I told her of my success in resolving much of my knee pain by taking Osteo Bi-Flex. After twenty-six days of taking those tablets my knees are much less painful and much more reliable. There still are times when I rock back and forth before standing, but there are times when I don’t. Wanda said she would be raising the subject with Dr. H at her appointment, which followed mine.

Cancer has taken its toll. There is no doubt that it has changed my daily life and my long-term plans. I sometimes do not recognize myself in the mirror. My thin, short hair makes me feel uncomfortable sometimes. However, I no longer spend the first and last minutes of every day plucking my hair from my pillow or my clothes. My hands used to have calluses on the knuckles that did not come from hard, manual labor. The skin has healed. This week my nose stopped bleeding every day. It bled only once. My eyelashes have returned longer than they were before. Nearly every eyebrow hair has returned. Nevertheless, I remain tired. I, who rarely slept more than three to five hours a night for my entire adult life, now take naps several afternoons a week. I still cannot plan a trip that will take me more than forty-five minutes from home without worrying about how my bladder will respond. The prospect of another dirty public restroom makes me cringe. My bowel reacts to fiber as if I had eaten jalapeno peppers and chugged a bottle of Tabasco sauce. I can only manage applesauce, bananas, chopped spinach and mashed winter squash. Most other fruits and vegetables worry me. I had a couple of nuts and felt like I had consumed glass. There is more healing to do on the inside than there is healing to do on the outside.

I hope to attend a new member meeting at the Chicago Gilda’s Club. I might benefit from an opportunity to meet other cancer survivors now that I no longer share the company of the other radiation and chemotherapy patients at the hospital. There are issues I will want to discuss with people who have experienced this disease and its treatment.

It is a slow process, but I may be improving. That gives me hope that I will make the full recovery that I very much want. What else is a girl to do except hope for the best?

Getting Better

It has been another month since my hysterectomy. I continue to suffer many of the ill-effects of chemotherapy and radiation.

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

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

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

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

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

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

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

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

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

Que Sera Sera

Yesterday I stopped at a salon and had my hair cut. I know, it seemed odd to me when I did it. I have hair on my head, but it is quite thin, baby fine, and short. I chopped off my chin-length bob when the hair began to fall out with such speed that I feared I might walk out of my home with hair and return bald. I was not unhappy with my work at the time because I covered it with a wig, but the wigs make me want to scratch my head all day. When I get home I drag the wig off and rub my scalp at all the little pressure points. My hair stands up in every direction. I can see hairs that have grown, hairs that have not, and, blessedly, hairs that have grown in. It looks more and more haphazard as some of the hairs have curl to them. Some remain stick straight. There is very little gray hair in the mix, but my new natural hair color seems darker than it ever was before. Light brown in places, darker in others.

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

I nodded. “Always has been.”

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

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

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

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

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

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

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