DermerDays

Milissa's dad gave me this word, Beshert, to describe a set of events that surrounded the discovery that my cancer was not as simple as the physicians originally thought. Two weeks after my first abdominal surgery, I received a telephone call from my gynecologist to tell me that the pathology report on my uterus revealed some alarming evidence: clear cell cancer in addition to the simpler, more treatable endometrial cancer, and lympho-vascular invasion. After she blurted all of that out, she proclaimed that she had no idea what the implications might be and that she needed to turn me over to the oncologist. She was calling to obtain my permission to have the consulting oncologist call me. She was washing her hands of me.

Ironically, my gynecologist discovered my cancer and then performed my cancer surgery because she was so completely sure it was "no big deal." In fact, when she first told me I had cancer, she said, "if you're going to have cancer, this is the kind to have." I can say that I absolutely took no comfort in this information.

In fact, in addition to performing the surgery herself and only bringing in a "consulting" oncologist for the surgery, she and the consulting oncologist came up with a brilliant plan (and by brilliant, I mean idiotic) to "save my ovaries" because I was "so young" and this cancer "was no big deal." The day before the surgery, my gynecologist called to ask if I'd like her to leave my ovaries intact. Uh, okay. So my gynecologist removed my uterus and, while she did make the cancer surgery incision (vertical instead of horizontal), she did not perform a "cancer surgery." The standard of care for this type of cancer is to remove the uterus, the ovaries, to sample abdominal lymph nodes, the omentum and do an abdominal wash (whatever that is). This made the announcement of the bad pathology, as I've come to call it, even worse. Without the proper cancer surgery, the cancer could not be "staged" and therefore, the gang of physicians working my case couldn't decide what to do with me.

But, I've gotten ahead of myself--it only became a gang after the gynecologist fucked it up and then didn't know what to do. Once she handed me off to the consulting oncologist who was then to become the oncologist, my gynecologist quickly faded into the background. I first had to wait seven hours after the initial telephone call from my gynecologist to talk with the oncologist as she was in surgery. During these seven hours, I did some surfing and found that the clear cell cancer would probably kill me. I then sat in a chair and contemplated how I would face my death -- would I be noble and brave or frightened and angry. . .I determined that I would be brave. Yeah, brave. Stoic, even. I worried about my partner and my family, especially my mother. (Funny thing about my mother--I worried about her at every turn of this cancer adventure and, at every turn, she surprised me with her incredible strength.)

When the oncologist finally called me, she told me not to worry. She did not really do a better job of giving me an explanation than the gynecologist. I continued to sit in my chair until Milissa came home. I didn't want to call her with this news as I thought she'd been through enough dealing with my surgery in conjunction with her fourth year of medical school. I told her when she finally came home.

So, Beshert. A whole bunch of medical folks got involved in my case, but this happened only because we had a "connection." Milissa and I had worked with a woman when we were at Arizona State University who is now an Important Figure at an important Boston Hospital in the "female" part of the institution (gynecology/obstectrics). Because Milissa had worked closely with this woman in her lab at ASU, she was able to call upon her when everything went awry. Things were awry for two reasons : one, my cancer was much worse than the physicans assured me that it would be; and, two, the physicians had not followed the standard of care in treating me because they believed so firmly in reason one. So, my physicians were concerned about the implications of their failures and thus could not really determine what to do. Without a stage, decisions about treatment could not be made or were at least difficult to make. They could not stage it because they did not perform the appropriate surgery. Our friend from ASU hooked us up with an Important Oncologist at Dana Farber. From there, more physicians were added into the mix and they finally had a conference and decided that they had to perform the correct surgery (prior to this decision, they considered chemo and full abdominal radiation). Milissa's father used the word Beshert to describe the fact that we had the connection that allowed me to see an Important Oncologist.

Beshert, he explained, means 'fated' or 'meant to be.' It's a Jewish thing -- one of the greatest accomplishments of my life is that I've managed to partner with a Jewish woman. I always wanted to be Jewish, I read a lot of Chaim Potok in junior high, but Pentacostal is a long way from Jew (which is probably why I wished I were Jewish). . .so the next best thing is being with a Jew--but, I digress. At some point during this time, I began writing my memoir (stop laughing, I'm serious) and I titled it, Beshert.

More Beshert
I just had my two-year post-treatment-for-cancer check on September 21. In the service of the documentary project that I am working on, I needed to film the appointment. Not only could I not face the appointment, I certainly could not bring myself to go about organizing the filming of it. Milissa gently encouraged me to film it, applying more pressure than is usual for her. I resisted, I denied, I ignored the impending date. Ambivalent, I put it off and tried to not to think about it. Suddenly, it was the day before the appointment and Milissa continued to press.

Since it was the day before the appointment, I emailed my oncologist to inquire as to whether or not I could bring a camera into the appointment room. I felt that this would surely end any potential filming as it was such short notice. Much to my dismay, my request to film the appointment was easily approved. But, I still needed a camera op. I asked my friend, Sarah, who worked on the film over the summer. Certainly this would end any possibility of shooting the appointment as she teaches and most likely could not take a day off on such short notice. Hoo-ha. It worked -- she could not do it. I did have another person in mind, but put off asking her. When Milissa called, I told her that I would just bring a small camera and if I felt like taping myself I would. She gently nudged, I stubbornly said I'd think about it.

In the meantime, an ex-girlfriend had emailed me about a mutual friend who had her picture in the New Times, a Phoenix "alternative" newspaper. This friend, Tania Katan, had been diagnosed with breast cancer when we were in college together. I was a bit older than she and her diagnosis came when she was 21. I have thought a lot about her after receiving my diagnosis and wondered what became of her. She was bold enough to write a play about her cancer and I knew that it received some acclaim and was performed at ASU. Tania and I knew one another from the Lesbian Gay Academic Union at ASU.

Since I was in a cancer kind of mood the day before the appointment and I couldn't concentrate on my work and I couldn't commit to shooting the appointment, I googled Tania. Much to my surprise, Tania is a bit famous. Even more surprising, and disheartening, was the fact that her cancer returned in her remaining breast ten years after the first diagnosis. However, I found that Tania had great strength in facing this and was delighted to learn that she had written a book about her cancer. I ordered it immediately from Amazon (as should everyone -- it is fabulous, called My One Night Stand with Cancer). I also found her blog and sent a message. Finally, I found an account of her running a Breast cancer fundraiser 10K shirtless, revealing her two mastectomy scars.

I got in my car at the end of the day in my studio that I spent surfing the web and contemplating the impossible task of filming my appointment. I loaded my cd of Milissa Etheridge and Joss Stone covering Janis Joplin at the Grammys and cranked it. I know, this is classic dyke drama -- me in my car singing out of tune with Melissa Etheridge and considering my poor, sad fate, feeling sorry for myself. But after Melissa Etheridge's Joplinesque scream, I turned off the cd player, pulled my cell phone out of my pocket and called my friend Stephanie.

"Hey, Steph, what are you doing in the morning?"

She filmed the appointment.

Posted by at 9:35 AM | Permalink | Comments (0)

Today I had my 2 year post-treatment appointment. The doctor declared that everything "looks good." I'm going to take that -- I have to wait two weeks for the test results and I still have to have a CT-scan, but right now I am going with everything looking good.

I am going to go for a bike ride.

Posted by at 3:27 PM | Permalink | Comments (0)

My partner and I recently moved. Maybe recently isn't the right word. We moved in December. We are now engaged in the task of selling our previous residence. It is a house that was built in 1949 and needs some work. It needs a lot of work, really, which is why we moved to a place that was built in 2002.

Remaining in our 1949 house is a collection of items that need to be donated to a worthy cause (yes, the hurricane survivors are at the top of my list). I have been spending some time organizing the remaining stuff and on Monday went to the house to continue. I unlocked the front door and went into our old bedroom. Our old bed is still in our old bedroom because we bought a new bed for our new house. The room was dark because the blinds were pulled and so I picked up a bag to start work when I was startled by a grunting sound that I soon realized came from a figure sprawled out on our old bed. I screamed. The figure sat shakily upright on the bed. Impulsively I shouted, "Who the fuck are you?"

The man jumped off the bed and stumbled toward me.

Realizing that yelling at him was perhaps not the best response, I started to back out of the room. He immediately began fumbling out an apology. As I backed toward the front door of the house, he walked toward me all the while mumbling about someone who he did work for that told him he could spend the night.

When we got outside, he said that the owner had told him he could sleep there. I told him that was not likely given that I am the owner. He then said that it was "some man" who was cleaning up around the house. I thought that perhaps the realtor, who had been hiring some folks to do landscape work, had possibly hired someone and given them a key. I quickly dialed his number. He was not in his office.

It might seem like a better idea would have been to dial 9-1-1; however, I spent the previous day with my Marxist friend, Karen G. I leave most encounters with Karen feeling woefully inadequate in terms of working toward social change which, for her, takes on an overwhelming moral imperative that is easily transferred to me when I spend time with her. Even now as I write about it, I feel that I am evidencing a lack of concern for the world. That day, after we had coffee, we came upon a man selling the "Spare Change" newspaper (which she always purchases--I never do). She stopped, purchased the paper, and then proceeded to have an extended conversation with this gentleman. They obviously knew one another and ten minutes later when we departed, Karen explained that they had ongoing political discussions. I felt chagrined when I tried to think of any homeless persons that I conversed with on a regular basis and could come up with none.

With Karen, the socially just, in my head, it seemed like I should, in a moment of opportunity to care for a homeless person, not call the police, but try to offer compassion (even if said homeless person had broken into my house and was sleeping in my bed). Nonetheless, I was frightened and just wanted to get away. I was outside and had managed to lock the door to the house. Rather than abruptly running and perhaps causing him to attack, I remained standing with a calm facade. He continued to ramble and eventually began to tear up and become more angry. He began to rant about the various injustices perpetrated against he and his "brothers" (his word)-- veterans of the vietnam war -- by the United States government. He equated he and his "brothers'" treatment with the circumstances of current soldiers. Feeling that he was not entirely inaccurate in his assessment, I had further trouble determining whether or not he was dangerous. However, as he became more agitated, he flung his body about as he slammed one fisted hand into the other's palm. The strong odor of alcohol that emanated from his body suggested that he was inebriated and thus the power of his slamming fist caused his entire body to jerk and he would momentarily lose his balance.

I tried to distract him by suggesting that he must be hungry. I asked him if I could buy him breakfast. He continued to be agitated and claimed that he was not looking for charity. He asked if there was work he could do--I said, "no, but I'd like to buy you breakfast, anyway." I managed to get him to accept the $10 I was offering and backed toward my vehicle. He apologized for becoming upset, but then continued with the rant. I broke in and told him that I had a doctor's appointment and that I had to leave and that he should get some breakfast. He continued to talk. I moved toward my vehicle slowly and repeated to him that I had to leave. I felt some Karen-inspired guilt, but not enough to stick around. I repeated to him that he should get some breakfast. He apologized again and then continued his diatribe. I reached my vehicle and said "goodbye." I got in the truck and locked all of the doors, started the vehicle and, as quickly as possible, pulled out of the driveway without looking back at him.

Later, when I spoke with the realtor, it became clear that no one had allowed this man to sleep in the house and that he had simply broken in.

I really did have a doctor's appointment, but not until much later.

Posted by at 5:05 PM | Permalink | Comments (0)

I am still thinking a lot about fear. It is time for me to make the two year post-treatment doctor's appointment--actually, it's past time--but I just cannot seem to do it. Part of the problem is that this appointment is the conclusion of my film and so, I have to, or I should, film it. But, I cannot get my head around that--how to ask the doctor if I can, how to do it. . .anyway, I have to make this appointment and then I have to go to it.

I was on my way to Target to buy some supplies for my studio and for some reason I started wondering how fear became so pervasive to me as a response to most stimuli. I was thinking about that song by Cyndi Lauper, Time After Time and the line, "the drumbeat's out of time." How I got to this, I cannot really say--I was listening to Ringside as I was driving so that doesn't really connect to Cyndi Lauper. Maybe I thought of Bill Long first and then I thought of that song.

Mr. Long was my junior high and then, much to my dismay, high school band director. I remember that I was excited to graduate to the high school band because the director was this very pleasant fellow who seemed kind-hearted. This I contrast to the overbearing, very tall and thin, booming, grumpy misanthrop who was my junior high band director.

I know that revealing that I was in band in high school may have raised my standing on the nerd scale, but I will not deny the truth: I was in band from 5th grade until I graduated high school. In fact, when I was in junior high, I attended band camp for two summers. It was not just any band camp, either, it was the Mount Rushmore Band Camp in the Black Hills of South Dakota. That's right, along with a busload of other junior high school band members, I travelled to band camp from Bozeman, Montana to somewhere near Mount Rushmore in South Dakota. Bill Long taught at the band camp one summer which was almost as distressing as him following me to the high school.

My freshman year of high school, the band director was the very nice man to whom I already referred. That was a wonderful year of band. This man (whose name, I am sorry to say, I cannot remember) was soft-spoken, gentle and positive. He was the exact opposite of the tyrant, Mr. Long. Either during my freshman year or the beginning of my sophomore year, the nice band director went loony. Literally. They hauled him off to the loony bin. I know that is not the appropriate term, but, considering what sorts of options might be available in terms of mental health care in Montana, I think it's safe to assume that loony bin might be an acceptable, even suitable, term. When it became clear that the nice man would not return to school, they offered his position to the great Mr. Long.

Mr. Long was well-respected and he made us all believe that he was creating the greatest junior high band the world had ever seen. I do not think it ever occurred to me or anyone else that he was a band director in the small town of Bozeman, Montana--that there was no way that the junior high band was of any consequence outside the borders of the small town. He acted as if he was conducting the Boston Symphony. While it is fine to strive for excellence, the pursuit is not an excuse to terrorize children. Who really cares about the junior high symphonic band at Bozeman Junior High School? Mr. Long had us all believing that it was something quite important--that what he did was of great consequence. He often bragged that he had us playing college-level scores. Maybe we were. So what. He was an asshole.

That's my point here. He inspired fear. I was afraid of him, as were countless other students in that bandroom for 48 minutes each day. He was a grown-up bully, delighted to oppress his pre-pubescent band students. Delighted. You could see his face fill with joy in between bursts of angry criticism as students held back their tears. One of his favorite activities was to test individuals by calling on them randomly and without warning to play a scale or a part of whatever piece we were rehearsing. He would then criticize, yell, berate the poor student who was called upon, often beginning in the middle of the student's attempt to play. He loved to yell, to pound his baton (in fact, during rehearsal, he was fond of using a broken drumstick rather than the baton because he could smack it down repeatedly and create much more noise as the slivers of the drumstick flew through the air to match the venomous spittle spurting from his shouting mouth), and stomp his feet.

I was terrified of him and loathed him. I was so excited to be rid of him and so distressed when he followed me. At the high school, he was afforded a new mode of torture. Our high school was a long, single level building and it stretched on forever; so, if you had a class at one end of the building, it was impossible to reach a class on the other end during the allowed passing time. The band room was on one end of the buildling's great length. We would run to try to make it to the band room on time and avoid one of his tirades. He was not above humiliating individuals in front of the rest of the band; in fact, that gave him the most pleasure of all, I believe. He actually got a stopwatch and timed himself walking "at a regular pace" from one end of the building to the bandroom. He conceded that he did have longer legs than most of us, but insisted that if we ran, we could get to the room on time. He began institution of a policy whereby he would lock the door to the band room at the exact moment the bell rang. Therefore, if you were late, you had to knock on the door and he would let you in and begin berating you as you made your way across the front of the room in front of the entire band to your assigned place. Once I arrived after the door had been locked and I turned away and skipped the class rather than face his public humiliation of me. He called my mom to tell her that I skipped, but she already knew because I told her first. At least I won that one, but the institution of fear by him in me lives on as noted by the song, Time After Time.

When ever I hear that line from the Cyndi Lauper song, I immediately get a sinking, sick feeling in the pit of my stomach and feel fearful. Why? Because Mr. Long would become enraged if the drums were "off". He hated it. I was in the percussion section. I fell victim, with my fellow percussionists, to repeated shouts of "the drums are off." He would stomp his feet, smack his beat up drumstick, often tossing it in the air, and cut the band off to correct the percussion section. I think he hated the percussion section, just as a rule--he had to teach the beginning drummers in fifth grade and I'm sure this played into his barely contained hatred toward percussion sound outside of the controlled parameters of the musical score.

Mr. Long was a small man, but he made my life miserable and his venom remains with me as is evidenced every time I hear that damn Cyndi Lauper song. She's not even saying "the drumbeat's out of time," to indicate anything about the percussion's timekeeping--it's a metaphor. It still gives me that sinking feeling, though.

Posted by at 5:39 PM | Permalink | Comments (0)