Posts Tagged ‘awkwardness’

Leave Me My Dignity, Please

06.11.2010

My favorite tech Chris still has not had his baby. Which, selfishly, makes me happy, because I enjoy my banter with him. There is an art to having conversation that fits in and flows with the work of stepping in and out of the room to adjust the radiation machine and change the filters.

There are always two techs in the room. I know about five by now, and I usually get Chris and one of the other four. I know their names and have topics to chat with them about as well.

Today, a third person was in the room. She was clearly not a tech. Although she had a hospital badge, she was wearing a suit and heels, not scrubs and sneakers. I glanced over at her as Chris helped set my arm up in the brace. This involves me slipping out of the awkward hospital gown and putting my arm over my head.

Chris noticed my look and said, “Oh, that’s the physicist.”

“Hello, Physicist,” I said. “What’s your name and what are you doing here?”

She told me her name and that she was here to observe treatment set ups. As the techs worked to align me, rolling me this way and scooting me that way, I felt that burning sense of indignity that has been festering since my initial diagnostic appointments.

“Physicist, I am lying half naked on a table with no breasts. If you are going to be in the room and I don’t know you, please tell me your name when you come in and why you are here.”

She apologized, and I apologized back for being cranky.

The rest of the treatment, Chris and my bits of conversation amounted to me telling him how awful it was to be treated like a piece of meat. “I may be a cancer patient,” I said, “but I’m still a human being and this is my private body.”

“I think we just become kind of numb to it,” he said in one snippet.

“I appreciate that you are outspoken,” he said in another.

No wonder he’s my favorite tech.

Tags: awkwardness, body issues, coping, daily life, doctor-patient interaction, healthy people, identity loss, self-advocacy, talking, what to say
Posted in Treatment | 6 Comments »

Radiation: Routine. Weirdness Factor: 8

06.01.2010

Radiation, mercifully, has become routine. As of tomorrow, I will be 1/3 of my way through the 33 days.

Here’s how it goes. I arrive around 7:40 AM and check in. I wait for the tech to fetch me, usually 10 minutes later. I go down to the basement and don one of the awful awkward green gowns that doesn’t actually close in front.

Memorial Sloan Kettering, where I went for my second opinion, had really nice front-closing gowns. I should ask them to send me one.

I gather my things and see one of the techs. Chris or Leslie or Zach lines me up on the hard table in the cold, windowless room. I unfasten my gown and take my right arm out. I ask Chris how his wife is doing, since she is about to have a baby any day now, or Leslie about her two young daughters. Zach just got back from Europe and has many stories to tell.

They redraw any of my Sharpie marks that are starting to fade. In the old days and in some places still, patients are tattooed with their radiation markers. I am glad to know that they are sparing me more permanent alterations to my body. Nonetheless, it surprises me the level of detachment that I now feel. I am unfazed by these people drawing their strange dark squigglies all over me with their stinky pens.

There are lasers on the radiation machine (nickname: Cyclops) that line up with these markings to make sure they are dosing the right regions of my body. Once a week, they take x-rays of me to make sure the marks haven’t moved or that my body hasn’t changed shape and that they are still lining me up correctly. I guess they figure, what the hell. I’m getting a bunch of radiation so what difference will 18 more x-rays make? (That’s 3 x-rays a week for 6 weeks.)

I lie on the table with my right arm above my head in a little armrest (although that makes it sound much more comfortable than it is). My neck has to crane all the way to the left to keep my head out of the beam’s path.

I get 5 doses from the beam. The whole thing, start to finish, lasts about 15 minutes. Then I get up off the table, go change back into my civvies, and cross the street to work. Except on Fridays, when I go and see the doctor first. As far as I can tell, she just wants to make sure my skin is not burning up too much.

I have received recipes and suggestions for several skin regimens through my various Twitter connections. The one I am using involves a clay poultice and some soothing creams. I think it’s working too. My skin is pink, but I am not suffering the way some people do. The skin can blister and even get first degree burns. I am lucky that I have been spared that fate.

My friend Phil has this great notion of a Weirdness Scale for treatment. Although there is something pleasant about how “normal” all of this is, the fact that this seems normal is unnerving. The weirdness factor, to me, is therefore an 8.

Tags: awkwardness, body issues, daily life, side-effects
Posted in Treatment | 6 Comments »

Radiation Interruptus

05.20.2010

I was scheduled to start my 6 1/2 weeks of radiation this past Tuesday. As you might recall, that didn’t work out. After an anxious afternoon of anticipation, I was set to go there last night at 9:30 PM. They had told me it would be my longest session as they worked out the measurements of where the machine would dose my skin through four tangents of my body. So I went out with a friend, having dinner and walking around a bit, making it an overlong evening out for the middle of the week.

The clinic, because they are absorbing all of my hospital’s patients who were displaced by the flood, was running late. They didn’t actually see me until closer to 11 PM. I was wary to go down there today, given that the two times I had been there had either been a broken machine or a big wait time.

Well, today I got both. I arrived on time for my 3 PM appointment. I was first told it would be an hour wait. Then I was told an hour and a half. I was amazed at the graciousness of both the patients and the workers in this stressful situation.

Around 4:30 PM, they called me back to the treatment room. They were so off-schedule that they offered to let people skip their treatment today and re-schedule for Saturday. I was lucky, I thought, to be getting my treatment. I felt grateful to not have things thrown off for myself anymore than they already had been.  I mean, I’m all scribbled over like some bad occult tattooist got a hold of me. Let’s not make this nasty neckline be a part of me longer than needed.

That’s the upper part of the region that they are radiating.

I went back and put on my gown that is not really made to open in front but they tell me to do so anyway. It leaves this awkward gap that I’m always fiddling with. It’s probably not a big deal, unless you end up hanging out in it for another hour and a half while the people around you are trying to figure out if they can fix the machine. But I’m getting ahead of myself.

Can you see the awkward gap?

So I go into the radiation room and I am greeted by the ghostly faces of my cancer sisters and brothers who get head and neck treatments. These masks look like nets that have been molded to people’s faces. They provide the techs with a coordinate system to use to aim their radiation rays. But in between treatments, they sit on the floor, looking somewhat bereft. They watch the rest of us come and go, as if waiting for their human mate to enter the room so that they can have life breathed into them again.

I climbed on the machine, which is very uncomfortable. It’s really hard and narrow. I complained about it the first night, asking why they couldn’t make it a little more cushy. The tech explained that there are very few materials that can withstand constant radiation. The machine has a big round face with a glass eye that gets slashed by a red laser when it’s doing its magic. When it starts to whir, a sign that says BEAM ON in red letters lights up in the corner. The whirring lasts about 30 to 60 seconds.

That little sign in the green frame lights up to tell me BEAM ON

So the techs come in, they line me up, they leave the room, the whir begins. BEAM ON. I hold my breath, the whirring stops. The techs come in, they move the plates, they line me up, they leave the room. BEAM ON. They come back in, move the plates, line me up, leave the room, BEAM ON.

Then the whirring slows. BEAM ON flickers. The whir starts up. BEAM ON is off again.

There is a longer pause than usual, but the techs come back into the room. They tell me that the machine has failed. The plan is to let me relax in the waiting area while they restart the machine. (Recall the awkward gap? Yeah. Not so relaxing.) These machines, they explain, are not meant to go from 6 AM to 1 AM like they have been doing. It sometimes just needs a reboot. That sometimes happens even when they aren’t seeing so many patients like they are now. They’ll see if it works again when they reboot it and let it rest for 10 or 15 minutes. Am I okay waiting? They know exactly how much of a dose they gave me for that third tangent. There is one tangent they didn’t get to, but they will once the machine is restored.

I wait in my green robe, texting my husband to let him know that I will be even later still in getting home. The techs reboot the machine. They try to get it back up whirring. It won’t whir. They try to give it a longer rest; do I mind waiting? I’ve waited this long, I say, self-consciously fiddling with the awkward gap.

The clinic manager comes out apologetically, explaining that they are having to send everybody home. They’ll make sure that I get in first thing in the morning. What about my half-dose? I ask. Well, the radiation oncologist will have to figure that out. Some guy who is not my usual doctor tells me it won’t be a big deal if I get 33 1/2 doses instead of my prescribed 33. I disagree, saying that I do not want more radiation in my body than is medically warranted.

I am trying to get through to my doctor, to no avail.

Why did everybody tell me that radiation was going to be the easy part?

Tags: attitude, awkwardness, coping, nurses
Posted in Treatment, Uncategorized | 4 Comments »

What people say, and what they really mean

12.22.2009

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Tags: awkwardness, healthy people, talking, what not to say, what to say
Posted in Humor | No Comments »

Embodied

12.20.2009

Since I was a child, I have always found our silences about bodies to be peculiar. We all have bodies and they all do certain, similar things, but it seems that part of becoming civilized requires the erasure of the bodily aspects of our lives from conversations, interactions, and texts. Don’t pick your nose, no potty talk. Gesticulating too wildly or an inability to sit still marks a person as less in control, and therefore, less civilized. But so much interesting stuff is left out by these silences. For instance, I wanted to re-write the Little House on the Prairie books to include the details about how they managed to toilet during those long,cold winters.

We are allowed, of course, to talk about the performative aspects of our bodies: how they look, how they appear to others. Women in particular learn whole codes about stripes, necklines, and hemlines as we try to make our bodies presentable to and likable by others, as they still are our interface with the world. It’s bodily sensations we often censor, anything beyond hunger, temperature, and maybe pain. And, despite the pink ribbons trotted out to support breast cancer research, we certainly don’t talk much about the actual disease. Maybe it’s because I am what my mother calls kinesthetic. I am not particularly good at sitting still, and I am happiest when I am dancing. Maybe it has to do with my mother-in-law’s observation about my extreme sensitivity to my own body. She likes to joke that I’m the only woman she’s ever known who can feel that she’s pregnant before I get a positive test. (It’s the dull low back pain I feel as the zygote implants in the uterine wall.) Whatever the reason, this silence about bodies part of civilization has taken more concerted effort from me to comply with. I find our bodily experiences of the world to be interesting, even if talking about them makes me uncouth. And now that my body is going through this unprecedented ordeal, my inclination is to make sense of it by talking about it. Hopefully not in a way that makes you uncomfortable, but I know no other way to let you know what is going on.

So with that preamble, let me share with you one of the strangest things about undergoing this treatment. I am transitioning from a healthy body to a sick body. That makes me a different kind of person in this world. At first, the marks on me were invisible. The two biopsies that were a part of my diagnosis caused me discomfort and pain, but with the right shirt, they could stay hidden. The chemotherapy-induced alopecia has marked me unmistakably and visibly with a new kind of body. A sick body. As a social scientist, I find it interesting walking around in a visibly sick body in a culture that works so hard to deny the inevitable decay that all our bodies face. It has repositioned me in my interactions in the world and therefore been revelatory about how things work.

There has been a social shift as well. Besides being physically marked with surgeries and the hairloss of chemotherapy, I have been involved in unprecedented interactions. At the most extreme, my private body is now diseased and therefore an object for medical inquiry and intervention. When my husband and I went for our first consultation with the oncology team, at the end of the meeting, they had me strip from the waist up and sit on the examining table with my hands on my hips. There were five doctors sitting around the brightly lit room looking at me. One by one, three of the five came up to me to palpate and measure my tumors. In any other context, I would be fairly certain I was getting felt up repeatedly by strangers, but this was a medical team doing their work. My husband and I exchanged a wide-eyed look, recognizing that we were entering a strange new world of meaning. To a lesser degree, now that I am hairless, men who would otherwise refrain from complimenting my looks regularly address me as “beautiful.” I don’t know if it is because I pose no threat to their wives, or if whatever social anxieties prevent a man from saying such a thing to another man’s wife are alleviated. Obviously, no one is after a sick woman, the thinking seems to go, so it’s okay for them to call her beautiful.

Or maybe they are just trying to help me cope with the transformation of my looks by reassuring me, regardless of what they actually think of a skinheaded lady. Whatever the motivation, the taboo is gone.

The first day I went out fully shorn, I wore the black button hat that my husband and I agree best hides my baldness. It was one of my few good days between Chemo 1 + Port Surgery and Chemo 2. I was somewhere between giddy and anxious about getting things done while I had the strength. After about 4 hours of running around, I stopped by the grocery store. I could feel my energy starting to flag, so when the bagger offered to help me out to my car, I said, “I think I’ll take you up on that today.” We walked to the car in silence. I sat in the driver’s seat and sipped my water and looked at my medication schedule while he unloaded the groceries.

Suddenly he said, “Ma’am. I couldn’t help but notice back there. And I want you to know, my momma had breast cancer. Twice. And she beat it twice. The first time,” he was eying the carseat in my Volvo, “I was really young. It was hard, but we got through. And I got to see something of my mother that most people don’t ever get to see. I saw how much strength and courage and love she had.” He rolled up his sleeve and showed me his bicep. I could make out the familiar ribbon shape tattooed in black over his own brown skin. “I see that strength in your eyes. I know you’re gonna be like her. Your kids are gonna be alright. I know you’re gonna make it.” I was absolutely speechless. I just blew him a kiss between my tears and thanked him for sharing with me.

As I drove home (getting lost, by the way –– have I mentioned how cruel the deletion of short term memory is when you are still relatively new to a place?), I wondered about this new person I was in the world. When you are pregnant, you become different in that people who would never ask to rub your belly approach you and do just that. Perfect strangers tell you childbirth stories. You are, in part, a symbol of something that everybody experiences on some level or another.

What does it mean to symbolize cancer in the world? Certainly the emotions it evokes in those who it has touched are not nearly as sentimental or idealized as those who grow moony eyed over maternity. I guess I am finding out.

One thing that’s for sure, it does not always mean getting the kindness that the young man showed me. I have been having difficulty with my port pain and in need of a bra that wouldn’t chafe against it. I got a suggestion to go to a fancy lingerie shop to buy a particular European brand. I arrived at the store, all lavender scents, soft music, and whispered requests, after I had just finished exercising, wearing a colorful cotton tye-dyed scarf around my head. When I went in to inquire, the saleslady kept averting her glances away from me and doing everything she could to avoid interacting with me. I don’t think I am exaggerating that she had a not very well hidden look of horror on her face. Of course, like many women’s retailers these days, the walls of the place were replete with pink ribbons and their accompanying slogans. Despite the declarations of female solidarity promised on those posters, this woman showed me no such thing, as if she could catch my cancer by smiling at me and treating me like a person. Needless to say, I left the store without buying a thing.

My older daughter wrote poetically about the little ship of me riding on these uncertain and turbulent waters of cancer. The astonishing part to me as an educator is how we are set loose on uncertain waters, navigating with a cornucopia of drugs to manage our own side effects (and the side effects of those side effects) with instructions like “Take 1 tablet every 8 hours for nausea as needed.” It is only through follow-up calls that take all morning that I have learned the mechanisms of the various antiemetics and can therefore be strategic about what to take when. And, unfortunately, this past week, I learned a painful lesson about using past experience to predict present needs as well as the foolishness of trying to titrate off of medications while you sleep. Because I had only needed Zofran for the first 4 days after Chemo #1, I figured I should be pretty good to start titrating my dosage on day 4 or 5. I stretched out my schedule, giving me more than 8 hours between doses, took one at bedtime, and hoped I could get through the night.

No such luck.

I woke up in the middle of the night with horrible nausea. I had stretched the window for the Zofran too far, apparently, and it took about a day and a half to get enough medication back in my system to not feel nauseous again. And the triggers for nausea, there are so many. Fatigue. Strong emotions. Anxiety. Strong smells. Arguments. Who knows what else. It all gets right down to my gut. The nurse I spoke with after this unfortunate event advised that I just stay on Zofran the whole time I am doing chemotherapy, backed by Ativan and Marinol as needed. Ativan makes me dopey and Marinol gets me a bit stoned, so she has, in essence, told me that, in addition to having short term memory problems, I might be a bit of a druggy for the next few months.  This completely messes with my conversational self-regulation, so the times I have gone to meetings or to teach, I feel like all the effort I have exerted in my adult life to not be a babblemouth is for naught.

Tags: appearance, awkwardness, body issues, changes, chemo, chemo rollercoaster, chemobrain, daily life, doctor-patient interaction, essay, identity loss, mental health, side-effects, support
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