by NotDownOrOut

On Monday I tried to talk the oncologist out of having me undergo cytoscopy on Tuesday because I feared it would be painful and cause more pain. However, as many of you know, she felt that if I canceled the test that I would not be able to reschedule. Having canceled once near the deadline, I would be a low priority for rescheduling.

On Tuesday, I drove to Barb’s house and she drove me to the hospital. When we got there the parking garage was closed to the public and patients unless you were disabled. We had to drive several blocks away to the Juvenile Justice Detention Center. Then we parked in an IMMENSE lot–bigger than the hospital’s entire lot. Then we walked (me, slowly and painfully) to the outside of the structure. We waited for about 15 minutes for a shuttle bus. I have the sorest knees imaginable these days. I am like Goldilocks. Every bed, chair, toilet, step, or bench is too low, too high or just right. Most are too low. As treatment has weakened me, I find it harder to stand up or sit down without the knees hurting. Somehow I managed to get onto and off the bus. We found the clinic that handles urology matters. The nurse came out to tell me the wait would be at least an hour. That’s the first time someone has done that. I really appreciated it as I was already stressed out. So we sat in another large waiting room and waited.

There was a woman who seemed to have come off of the street for shelter–although I heard her speak with the receptionists after she slept through her appointment. She wore multiple layers of clothes and carried a satchel and a backpack. The bags and her pants showed salt stains, suggesting she has stood or sat out in the elements during our recent snowstorm. Her pants were tan and covered with writing. I could plainly read the words: “Please don’t hurt me anymore.” There were other words written with marker on other clothing, but the messages were illegible. She wore sturdy boots on her feet–the kind construction workers wear. The heels showed long wear. She wore several shirts, a bulky, dirty, down jacket with a hood tied tight even though the room was warm. I could see other fabrics wrapped around her head inside the hood. She slept in a chair with her back to a pillar. Every once in awhile she would shudder, sit up, and whine piteously. Sometimes she spoke to no one in particular. 

The auxiliary society personnel pushed a trolley through the room and offered free coffee and cookies. Very few people accepted anything. In some cases, people were fasting prior to a test. People who did take the offer often had a soda in hand so were just taking a little something extra. The auxiliary ladies put out magazines as well. Imagine a doctor’s office without magazines. It’s common at this hospital. The gossipy magazines disappear quickly. The huge magazine with a tuxedo-wearing Brad Pitt on it remains longer. The folks at this hospital don’t much care if he looks good in fairy tale surroundings on a high fashion photo shoot. They might care whether or not he and Angelina will marry or if Jennifer wants him back. They want to know how to feed a family for a week for $40 or how the Kardashians are doing. I studied the pictures. He looks pretty good by candle light.

When I was called, the nurse took me back to a room used for various types of tests. I confessed my fears. I have been terrified of taking this test because I already am in pain. I am so burned from radiation that I cannot imagine a camera being inserted in my urethra. It hurt incredibly to have an internal examination and to have a catheter inserted and removed. I am weary of pain. I know from experience that no pain medicines will be prescribed that will ease this pain, much less avoid it. The nurse was nice. She explained what would happen before we began. I took an antibiotic pill and was given a second to take in 12 hours. Forcing a camera up the urethra to the bladder can move bacteria there and cause infection. The pills are intended to prevent that result. 

I took off all my clothes but my socks and put on a paper gown. I sat up on a table and had my blood pressure taken–a little high that day from my anxiety. 

I got onto my back and the nurse put my legs into the stirrups. She used a velcro binding to secure them. Then she draped me with enough sheets to go make a tent in the Sahara. Only the area to be tested was visible. She hung an immense bag of fluid from an I.V. pole. Think satchel, not a one liter bag. I was thinking, whoa, you can’t put all that water into my bladder. Ever since the radiation I think it holds a thimble-full of liquid with difficulty. 

She swabbed me with Bentadine–remember Mercurochrome? She told me it would make me itchy. I told her I had to work until nine that night. She promised to help me clean up after the test. 

Dr. W came in. I told him I was terrified. He promised to be gentle. But no one who isn’t undergoing the test can predict what hurts, can they? They put some Lidocaine on the opening of the urethra and let it sit a bit. It was supposed to numb the area. The area was small. Moments later the doctor said, “You’re going to feel some pressure.” I gritted my teeth and tried not to tense my body. Talk about pressure. Yikes. He got the camera inside. It hurt as it traversed the area to the bladder. Once he got there he saw blood. It made the images cloudy. He did not see any formations or growths that looked like bladder cancer or any stones. He tried to limit his moving around, but I was puffing like a woman in labor and trying not to cry.  

Then he irrigated the bladder with some of the water from his giant I.V. bag. When it wasn’t irrigating swiftly enough, he asked the nurse to climb a step stool and squeeze the bag to get the water to move faster. Ay caramba! Then he sucked that fluid out. They will test it to see if they can find any abnormal cells. It will take a week for results. 

He withdrew the camera. I was done. They told me that I would experience pain, bleeding, and other symptoms I already have, but worse. For several days. I knew this would be the case from the few postings I found on the Internet. My fears were realized. We had some more “good news” but I still did not know why I was in so much pain, how long it would last, and how to manage or cure that pain.  

The nurse cleaned me up with cold water. Yikes! Then I dressed. I was trying not to cry as I waited for a receptionist to “check me out” at the clinic’s front desk. More pain to come. I keep hearing that. I really do not know how much pain I am equipped to endure.  

Barb went for the car while I sat and waited in the hospital lobby. I was surrounded by pregnant teenagers waiting to see their gynecologists. They were eating ice cream and candy and laughing about how the doctors would react to their diets. They seemed proud to be pregnant at such a young age. It was getting them out of school. Two of the girls were clearly sisters. I felt immeasurably saddened by their conditions. I later went to school to teach my night class. I kept thinking about the prospects of girls who don’t complete their education.

Back at my apartment, I reflected on the day’s events. It does hurt worse now. I dread the bathroom. I cry when I’m there.  

I also learned a valuable lesson. I went for the test to figure out why it already hurt and why I was bleeding. I worried I might have as a side-effect of treatment called radiation cystitis. But there was no discussion of that during my test. Why? Because, now that I have had cancer, all anyone looks for in testing me is more cancer. What did the urologist talk about? Tumors, growths, abnormal cells—these are all code words for cancer. 

I wanted to figure out what I had to do to feel “normal” again. I get the feeling the new normal is “crazy.” I’m hanging in there anyway. 

I had a long talk with my cousin Susie this week. She helped me work through a few issues that have troubled me. First, for the last two months I have been trying to get someone to talk to me about my bladder pain and the fact that it bleeds regularly. No one has listened to me: not the radiation nurse who had to see a picture of the big blood clots I was passing before she took my pain seriously, not the hospital staff that “treated” me during my hospitalization, not my oncologist, not even the urologist who gave me yesterday’s test. I have put an incredible amount of energy into trying to figure out how much to be concerned about a bladder that bleeds every day and that hurts terribly every time it is “exercised.” I still don’t know whether I’ll be suffering this way all my life or for some time. I have no idea if I can do anything to help it recover from radiation. 

Second, I have no guidance as to how to live healthy going forward and no real prospect of getting any assistance in planning my future. I need to call in other assistance to do that. Dominique has given me a name of a naturapath. I need to make an appointment because I have spent all this time being compliant with treatment and have done little to work on prevention of recurrence. 

Third, there is no support in my current treatment for my mental health as I deal with cancer. Lucky me, I have family and friends who love and support me. Without them, I would have no resources available to deal with the fact that soon I, like my doctors, could be facing every challenge from the standpoint of “Is this a sign that the cancer is back?” I don’t want that to be my state of mind. I want to be much more positive than that. At some point I need to find the right form of support for me—a group, a counselor, a social worker. My friends and family will need a break. There is also a benefit in talking with people who have walked this road. 

It’s not just chairs and toilets, beds and couches that Goldilocks has difficulty handling. I have to find the right combination of information, support, analysis, and planning to handle the fact that I have had cancer. The hospital with which I am associated has helped me address the unknowns with respect to my pathology report—those untested lymph nodes. However, my hospital is a county hospital with a huge patient load and little support for its professionals. I need services it is not set up to provide to resolve my issues and concerns—immediate and long-term. It is coming to the point when I will have to start to find my own way through these challenges. It is getting to the point when I must seek out other resources and take charge of my life plan. I am tired and sick and not trained to handle this, but I am educated and surrounded by love and support. I may feel like my legs are too unsteady for me to go forward, but they are not. I can do this because I am not willing to coast or to wait and see. Cancer has not changed me, only a part of me. I am still in a position to navigate the trip I am taking. It is time to set a course.