Radiation: The end is near

Sorry for the spotty posting. Radiation has been kicking my butt, and I haven't felt like doing much of anything other than sleep. Fortunately, my last treatment is on Monday. I don't know about you, but I like my Elisa done medium-well. I now have a dark tan in my armpit, and a dusting of tiny blisters on my chest. Compared to other patients, my skin is doing great. One woman, who looked to be in her late 20's, told me that her incision had opened and was infected. I asked her how long it had been since surgery, expecting a relatively recent date. "In August," she said. She had sixteen cancerous lymph nodes, so they decided to give her a second blast of chemotherapy, before starting radiation. She looked drawn and frightened, her baldness covered by a bandana.

Late twenties sounds awfully young for breast cancer, but I have discovered that it's not that uncommon. Nia*, a woman who has her appointment right after mine, is only 33. We both had time after our treatments last week, and lingered in the waiting room. She overheard me saying to a nurse, somewhat bitterly, that HIV can be managed better than cancer. The nurse countered "well, we need give you a pep-talk, and then maybe you can feel more hopeful!" No, she's right, Nia said. She's an oncology nurse herself, and the daughter of a woman who died of breast cancer at 29. Her mother was diagnosed when she was 25, and had a metastatic recurrence barely a year after her mastectomy. Nia has two young daughters, both terrified that this could lie in their future. To make matters worse, her long-time boyfriend broke up with her two weeks earlier. "He stood by me through surgery and chemotherapy, so I couldn't believe it when he ended it." Her eyes filled up. "I'm so tired of people telling me to be brave. They don't have to go through this." We are both near the end of our treatment, and now the waiting begins. Waiting to prove a negative, to not have it come back.

Another patient, Barbara*, said to me "Every time I get a headache, I wonder-is it in my brain?" In a way, isn't it, already? The young woman wearing the bandana had the same facial expression one sees in photographs of war refugees: the fifty yard stare of deep trauma and hopelessness. I've been there, and will probably visit again. The only solution for me has been anger, a deep burning rage. Why do they have to wait until a bone breaks before diagnosing metastasis? Unacceptable. Why are young women getting breast cancer? Completely fucking unacceptable! Why isn't there a cure? WHY ISN'T THERE A MOTHERFUCKING CURE?!!

*Names changed

Radiation: Week Two

The dressing room in Radiation is a busy place at 8:15, early morning being a convenient appointment time for most patients. I meet the same women every day: the youngish Lincoln Park matron with the Vuitton duffle, the petite grandmother who walks ten blocks to the hospital, and a lady of perhaps fifty who wears skin-tight spangled jeans and an extravagant long wig. It was the last woman who gave me the head's up on what to expect in the next two weeks. "What number are you on?" she asked me. I told her I was on 14, so not quite halfway through. She was getting treatment number 20, and her skin was very sore. She warned me, "Don't put any cream on before. It's like basting a turkey." She showed me the area on her chest and armpit where her radiation was targeted. Her normal color was a medium brown, but the area under her arm had been burned to nearly mahogany. My skin is starting to show a radiation burn, as well. Poor breast: scarred, dented and now broiled until it turns red...Frankenboob, I call it. I hope holding on to it was worthwhile.

The Gambler

For the second time this week, Kenny Roger's The Gambler was playing on the intercom in the radiation lab.

You got to know when to hold 'em, know when to fold 'em,
Know when to walk away, and know when to run.
You never count your money when you're sittin' at the table.
There'll be time enough for counting when the dealing's done.

I am far from being out of the woods with this disease. The disappearance of my oncologist, Dr. G, has only increased my anxiety and depression. When I tried to get an appointment, the soonest I could be "fit in" was February 18. I had to call his nurse to ask for orders for CT and bone scans (my idea, not his). It's not clear if he's even read my surgical pathology report, but perhaps he's too busy to pick up the phone for five minutes to discuss it with me. I'd like to thank everyone who has offered advice about second opinions, including Cancer Bitch.

Yesterday, between my scans and radiation, I struggled with the blasted scheduling staff at the Cancer Center. All I wanted was the phone number of a nurse who works for another oncologist there, Dr. C. Exhausted, and sick of being transferred and then stonewalled, I began to cry. It's sad when that works, but it did. I left a (tearful) message with the nurse, asking her if I could be scheduled for a second opinion. One of the techs at the Nuclear Medicine scanning lab noticed my puffy, red eyes, and asked me what was wrong. Trying to hold back the water works, I told her about how my doctor appeared to be missing in action. Later, she slipped a piece of paper into my hand with the names of two oncologists not associated with the Cancer Center. "They're both terrific. The second one actually gives his patients his personal cell phone number." Imagine that; a doctor who actually talks to his patients.

First Radiation Treatment

Remember when I said I get bitchy during my cancer treatment? In addition to the tattoos for radiation targets, I'm considering getting one on my forehead that says "Five Days A Week, For Six Weeks," because I have to repeat this over and over and over, sometimes to the same people. I'm getting radiation Monday-Friday for six weeks. You will be tested on this later.

Also, please don't ask me what "stage" I am. I may choose to volunteer the information, but since most laypersons don't understand staging, it's essentially just a scary number. I don't like scaring people, especially myself. Despite statistical survival averages, some Stage I cancers advance, while some Stage IV cancers go into remission. For a scientist's insight on cancer survival statistics, I suggest you read The Median Isn't the Message, by evolutionary biologist and author Stephen Jay Gould. In 1982, Gould was diagnosed with abdominal mesothelioma, a rare and, according to survival statistics, deadly cancer. He lived another 20 years, eventually succumbing to another type of cancer entirely.

Off of my cancer soapbox and back to radiation. The radiation lab is in the basement of the Womens' Hospital. A windowless and cheerless space, the environment was considerably livened by an oldies rock station. The Beatles sang "Twist and Shout" while the radiologist and two young male technicians took setup x-rays. "I'm going to try to get your sternal lymph nodes," Dr. K told me. What about lung damage? "It will just touch your lungs, but it's an acceptable margin." The arm of the radiation machine was poised over me, its glass face reflecting an image of my naked right torso bathed in green and white target beams. Once the targets were in place, the medical staff retreated to the control room. An alarm sounded, and the "Beam In Use" warning light on the wall flashed red. I was now being exposed to large amounts of radiation. I felt nothing, at least physically.

Afterwards, I dressed and went in to the ladies room to put on some makeup. I started weeping, and had difficulty pulling it together. It will get easier, I know. I am constantly amazed at my adaptability, an apparently built-in feature for us homo sapiens. It's not that "what doesn't kill us, makes us stronger;" we already are strong, and it takes a lot to kill us.

Week from hella

Stop the world, I want to get off. Well, not really, but I'd like to pause the ride for a little while.

Early on Christmas eve, I had a festive visit with Dr. K, the radiologist. Before I consulted with her, a resident took a history and examined me. "Dr. B did your surgery? Oh, he's good. His patients usually don't have much scarring." Afterwards, Dr. K came in to complete the examination, and to describe the course of treatment. I'll be getting six weeks of radiation, five days a week. Each treatment will take about fifteen minutes.

The first step was to create a treatment plan, part of which would be to determine if it was safe to zap the lymph nodes lying along my sternum. If the lymph nodes overlap the lungs, it's a no-go, since radiation can cause damage to lung tissue. Dr. K checked the schedule that day. "There's been a couple of cancellations. Would you like to get your planning CAT scan right now?" Six months of cancer treatment has taught me a couple of things. First, if they give you a blanket, do not give it up until they allow you to get dressed again. Second, if they offer you an appointment for the same day, accept it immediately.

Off we went to the CAT scan thingy. After looking at the images, Dr. K came in to speak with me. Unfortunately, my lungs were partially under my sternal lymph nodes, so she recommended against targeting that area. Instead, they would hit my axillary, mammary and clavical nodes. A technician tattooed three blue dots at target points on my chest and armpit, and then photographed my naked torso. Tattoos and nude photos all in one hour! It was like mini spring break, only without beer bongs.

I drove home and started cleaning the house in preparation for my in-laws arrival that evening. Christmas is sort of a mixed blessing for those of us afflicted with seasonal affective disorder. I could feel my mood darkening along with the days, but the flurry of activity preceeding the holidays kept me too busy for a free-fall into the Abyss. One serious misstep was, while shopping for gifts, to purchase the book Cancer Made Me A Shallower Person, by Miriam Engleberg. I had read about Engleberg's collection of cartoons a couple months ago, and all of the reviews were right on: the book was an often very funny account of what its like to be a cancer patient. However, I secretly hoped that Engleberg was not like me. You see, she died last year, after cancer spread to her bones and brain. As I read the book, I couldn't avoid noting the eerie similarities. She had the same type of breast cancer as me. She had a lumpectomy, with chemotherapy and radiation. In 1979, we both had a boyfriend named Roger. OK, I had a boyfriend named Roger in 1980, but you get the idea. If she were alive, we would be the same age.

After I read the book, fear lay in my heart like lead. Between her first diagnosis and death, Miriam had only five years. I am already enduring the bittersweet realization of midlife. Much is behind me, and what is ahead will pass quickly. What if the cancer comes back? In Greek mythology, the three Moirai, or Fates, determine the length of life. Atropos,"the inexorable," cuts the life-thread spun and measured by the other two goddesses. I feel like I've glimpsed the shears, still without really knowing the measure.

Like my father before me, movement through space provides me some respite. If my dad was anxious, sad or angry, he would drive and drive and drive until he put some distance between himself and his troubles. Being a city-dweller, the train is my neurotransmitter of choice. Pink Line, take me away...to Pilsen, which is where I took the photo above. Pilsen is an old Bohemian (as in Czech and Slovak) neighborhood on the south side of the city. It's now Mexican, with a growing art gallery district in its eastern section. The main drag, 18th street, is heartbreakingly beautiful. Tall Mittel-european stone and brick buildings line the street, while little houses off of it reflect a more peasant vernacular, with charming, crude flowers carved in the window lintels. One is prevented from complete transport back to old Bohemia by some of the eye-popping exterior paint jobs, mostly in shades more common to Oaxaca. The colors could cheer even Kafka. And so it did me.