I am frightened at myself at times.
Today I was in the cancer resource room, calling Tom as is my wont to do. (They let you make free long distance phone calls there.) We had been on the phone for about 8 minutes. Bill, a guy living at the house in worcester, sat across from me, waiting for the phone. He had been on the phone earlier, but let me call between his calls. Then the social worker who has one of those store-bought smiles came up to me and said, "Dear, there are others waiting for the phone."
I was angry.
I had been on the phone for a total of 8 minutes. The people who'd been on the phone before Bill had been on for 20. Bill was in no hurry. His appointment wasn't until 2 and it was 10:35.
"Can you let me have one more minute?" I hissed. "Just one more."
"We have to regulate the time here."
I started to cry. When I got up to leave, Store-Bought said, "Thanks dear."
"Fuck you," I said.
I don't know why I did that. Said that.
I talked to one of the kids who was there and he said everyone was in shock, more because I was usually so quiet. He also said that someone thought Tom was cheating on me and that's why I said that. That comment made me laugh.
I am quiet among these people because if I opened my mouth, I am afraid I will start to scream without end. I am a person with a disease that pits my body against itself--myself. Even my brain is no longer sacred. And I sit in this antisceptic atmosphere daily, far from home and love, while they pump deadly radiation into my system.
I don't know why her candy-coated crooning pissed me off so much. Well, maybe I do. Here I was, trying to fit my life into a abnormal-normal scene, and because she'd been passing by while Bill sat and waited she decided my time was up without bothering to find out how long or who I was talking to. And she felt it was her duty to shove her face in mine.
It was as if it peeled back just enough skin to open an artery rather than a vein. I think there is so much pent-up furiosity and passion in me even I don't know the strength of it. It scares me.
Wednesday, August 27, 2003
Tuesday, August 26, 2003
Top Ten Reasons to Love Boston:
10. The guy in the three cornered hat trying to force you into sightseeing.
9. Saying "T" in refrence to the subway.
8. People saying "HAAArvard" when you say you're staying in Boston.
7. Strangers handing you old Boston maps out of the goodness of their hearts.
6. A gorgeous statue of a woman in contemplation on the MGH lawn.
5. People skimming the current of the Charles in those long, thin boats.
4. A nameless greasy spoon on Harvard Sq.
3. Doctors who wear the same woven, squeaky shoes every day, despite their riches.
2. The Chinatown to Chinatown buses that not only take me to and fro but also allow me to thumb my nose to big-time commercial transportation.
1. My beloved Kansas lives here.
10. The guy in the three cornered hat trying to force you into sightseeing.
9. Saying "T" in refrence to the subway.
8. People saying "HAAArvard" when you say you're staying in Boston.
7. Strangers handing you old Boston maps out of the goodness of their hearts.
6. A gorgeous statue of a woman in contemplation on the MGH lawn.
5. People skimming the current of the Charles in those long, thin boats.
4. A nameless greasy spoon on Harvard Sq.
3. Doctors who wear the same woven, squeaky shoes every day, despite their riches.
2. The Chinatown to Chinatown buses that not only take me to and fro but also allow me to thumb my nose to big-time commercial transportation.
1. My beloved Kansas lives here.
It's been awhile since I've darkened this blog's door. I have excuses but won't elaborate.
This weekend I was back in New York, and Christopher and I went to this Howl fest at Tompkins Sq. Park. It was purported (sp?) to be a celebration of the creative monster of the Lower East Side. The main attraction (which is what drew C. and I) was that there was going to be a Kiss cover band--the members of which were all midgets. Now, I'm not a fan of Kiss, but this Mini Kiss band could not be missed.
We had to wade through some other (rather horrible) acts before the golden moment arrived, however. This hostess woman, wearing a tight white dress and boobs falling all over the place was very annoying. Christopher said she had me beat when it came to NY snobbery. Lower East Side snobbery, that is. She went on and on about how LES was the place where riffraff came and copulated and brought forth art in its purest form. (My interepretation of course.) Now some of this may be true, but in my opinion, the more you go on about how creative you are, the less creative you actually are, since you spend your time talking yourself up instead of getting down to business.
The Mini Kiss band came at last, and they were as great as I expected. They only sang one song, or rather, they only lipsyncked (sp?) one song.
We also danced the locomotion. Yes. Apparently they wanted to break some Guiness record.
This weekend I was back in New York, and Christopher and I went to this Howl fest at Tompkins Sq. Park. It was purported (sp?) to be a celebration of the creative monster of the Lower East Side. The main attraction (which is what drew C. and I) was that there was going to be a Kiss cover band--the members of which were all midgets. Now, I'm not a fan of Kiss, but this Mini Kiss band could not be missed.
We had to wade through some other (rather horrible) acts before the golden moment arrived, however. This hostess woman, wearing a tight white dress and boobs falling all over the place was very annoying. Christopher said she had me beat when it came to NY snobbery. Lower East Side snobbery, that is. She went on and on about how LES was the place where riffraff came and copulated and brought forth art in its purest form. (My interepretation of course.) Now some of this may be true, but in my opinion, the more you go on about how creative you are, the less creative you actually are, since you spend your time talking yourself up instead of getting down to business.
The Mini Kiss band came at last, and they were as great as I expected. They only sang one song, or rather, they only lipsyncked (sp?) one song.
We also danced the locomotion. Yes. Apparently they wanted to break some Guiness record.
Thursday, August 21, 2003
I've been pretty uninspired lately.
What can one really say about a life that totally surrounds itself around a few minutes in a dryer?
I eat, sleep, watch TV and read. Right now I'm in the middle of Far from the Madding Crowd. Bathsheba is really getting herself in deep doo doo right now with Sgt. Troy. And Farmer Oak and Farmer Boldwood are drooling and wringing their hands over her. I don't know why. I don't like B. at all. She is the most annoying character in 19th Century fiction. I finished Villette a while ago, and Lucy Snow kicked some serious ass. I think she's tougher than Jane Eyre. I also read All the Pretty Horses. I had been suspicious because Matt Damon was in the movie version, snob that I am. I loved it. The writing was superb. It is one of those unwesterns, like Unforgiven. I'm going to have to read more of that author's stuff.
As far as TV goes, the usual gamut of Simpsons, Insomniac, Jon Stewart, West Wing, Seinfeld, the Osbourne's. West Wing is on every weekday evening now on Bravo. So I can see all the ones from the beginning of the series.
What can one really say about a life that totally surrounds itself around a few minutes in a dryer?
I eat, sleep, watch TV and read. Right now I'm in the middle of Far from the Madding Crowd. Bathsheba is really getting herself in deep doo doo right now with Sgt. Troy. And Farmer Oak and Farmer Boldwood are drooling and wringing their hands over her. I don't know why. I don't like B. at all. She is the most annoying character in 19th Century fiction. I finished Villette a while ago, and Lucy Snow kicked some serious ass. I think she's tougher than Jane Eyre. I also read All the Pretty Horses. I had been suspicious because Matt Damon was in the movie version, snob that I am. I loved it. The writing was superb. It is one of those unwesterns, like Unforgiven. I'm going to have to read more of that author's stuff.
As far as TV goes, the usual gamut of Simpsons, Insomniac, Jon Stewart, West Wing, Seinfeld, the Osbourne's. West Wing is on every weekday evening now on Bravo. So I can see all the ones from the beginning of the series.
Saturday, August 16, 2003
Tom and I are spending the weekend at a friend's apartment in Somerville. Wandered around Harvard Sq., saw the big university, blah blah. I've become a snobby New Yorker. Nothing is as cool after you live there. At least so the story goes... The whole Boston thing isn't what I'd expected. I'd have thought it would be bigger, more--just more. People are fairly nice. In the subway they are not. Apparently the concept of letting the people on the train get off before you ram your way on is not an idea held by Bostonians.
Thursday, August 14, 2003
Wednesday, August 13, 2003
A description of my life at present as one individual (you know who you are) puts it as "Tumor Girl."
We leave the house (me and the other tumor people) at eight or nine o'clock in the morning. It's around an hour to get from Worcester to Boston, depending on traffic. We get to Mass General Hospital and the van drops us off in the front of the cancer building. Also known as the Cox tower. Some go into the oncology office near the front of the tower, others go to the Northeast Proton Therapy building.
I go to both. It just depends on the day or the mood of these machines, which have a tendancy to break down.
I usually go to Cox before my treatment because there is a cancer resource room where one can make long distance phone calls for free. I call Tom. We talk. Then it's off to either photon or proton therapy. If it's photon, I stay in Cox and sit in a fairly cheerful waiting room where volunteers offer various non-alcoholic beverages. When my time comes, my "treatment team" fetches me. One has an awesome nose ring. We share a few jokes (they can't be a whole lot older than I am) and then I lay on a table. They find my tattooed spot and highlight them with a pen. Then they strap my head down, and zap me a few times with the photons. I get this weird chemical feeling in my head. Then I'm done.
If it's proton, I go to this basement that's being renovated, so all the walls are a stark white. The hall carpet is covered with plastic to protect it from the paint, so one's feet makes this strange squeaking sound. The waiting room could use some improvement. This certain fellow (tall, dark-haired, fairly good-looking) takes me to this giant machine, and puts me on a table.
The machine is hard to describe. Imagine the inside of your dryer magnified a hundred times. Imagine that you had to lay on a table and be pushed to the center of this dryer. Imagine that a plastic mask is placed on your head and bolted down. That is what it's like.
With the proton beam, I only know that protons are being zapped at me because the machine does this whirring thing. Otherwise I can't tell anything. I know that protons are stronger than photons, so one would think I feel something other than clausterphobic.
We leave the house (me and the other tumor people) at eight or nine o'clock in the morning. It's around an hour to get from Worcester to Boston, depending on traffic. We get to Mass General Hospital and the van drops us off in the front of the cancer building. Also known as the Cox tower. Some go into the oncology office near the front of the tower, others go to the Northeast Proton Therapy building.
I go to both. It just depends on the day or the mood of these machines, which have a tendancy to break down.
I usually go to Cox before my treatment because there is a cancer resource room where one can make long distance phone calls for free. I call Tom. We talk. Then it's off to either photon or proton therapy. If it's photon, I stay in Cox and sit in a fairly cheerful waiting room where volunteers offer various non-alcoholic beverages. When my time comes, my "treatment team" fetches me. One has an awesome nose ring. We share a few jokes (they can't be a whole lot older than I am) and then I lay on a table. They find my tattooed spot and highlight them with a pen. Then they strap my head down, and zap me a few times with the photons. I get this weird chemical feeling in my head. Then I'm done.
If it's proton, I go to this basement that's being renovated, so all the walls are a stark white. The hall carpet is covered with plastic to protect it from the paint, so one's feet makes this strange squeaking sound. The waiting room could use some improvement. This certain fellow (tall, dark-haired, fairly good-looking) takes me to this giant machine, and puts me on a table.
The machine is hard to describe. Imagine the inside of your dryer magnified a hundred times. Imagine that you had to lay on a table and be pushed to the center of this dryer. Imagine that a plastic mask is placed on your head and bolted down. That is what it's like.
With the proton beam, I only know that protons are being zapped at me because the machine does this whirring thing. Otherwise I can't tell anything. I know that protons are stronger than photons, so one would think I feel something other than clausterphobic.
I often think in images. When I get a new idea for a story or a script, it's usually this one image that I can't get out of my head, and I have to write the story to figure out how the character(s) got there in the first place. If I don't have an image to get to, writing is a lot more difficult. The last few ideas I've had contain wedding dresses. I thought it was because I'd recently gotten married, but I keep having them. I have no clue what that means.
An image:
Last Thursday I walked to Elm Park, which is a few blocks from the house. There was a pond near the center of it, more than likely human-made, and this one tree that stood just a few feet from the shoreline. I sat beneath the tree and just looked around for an hour or so. A gaggle (flock?) of geese soon swam to where I was and looked at me expectantly. I told them they shouldn't trouble themselves. I had nothing to give them. A few minutes passed. We had a staring contest. Then the leader swam away, and the others followed.
A little later it began to rain. Softly. I got up to leave, but I couldn't make myself walk away. The pond was dimpled with drops everywhere except where the trees branches stretched over the water. I sat back down.
I know this is silly, but it felt like the arms of the tree were protecting me from the rest of the world. So I could look out on its beauty and its ugliness without fear.
An image:
Last Thursday I walked to Elm Park, which is a few blocks from the house. There was a pond near the center of it, more than likely human-made, and this one tree that stood just a few feet from the shoreline. I sat beneath the tree and just looked around for an hour or so. A gaggle (flock?) of geese soon swam to where I was and looked at me expectantly. I told them they shouldn't trouble themselves. I had nothing to give them. A few minutes passed. We had a staring contest. Then the leader swam away, and the others followed.
A little later it began to rain. Softly. I got up to leave, but I couldn't make myself walk away. The pond was dimpled with drops everywhere except where the trees branches stretched over the water. I sat back down.
I know this is silly, but it felt like the arms of the tree were protecting me from the rest of the world. So I could look out on its beauty and its ugliness without fear.
Monday, August 11, 2003
Friday I sneaked (snuck?) down to Manhattan. I told no one but Tom. So people at my house were fairly shocked to see me. The ride down was hideous. These two faux-poor men were talking about how much money they didn't have, all the shows they'd seen (one of them was an actor), in what cities (world-wide ones, of course), the funds they'd gotten from dead relatives, and all the little cafes and little nooks of pastry shops of course only they knew about in Manhattan. They both happened to also live in the Village. One cannot live in the Village if one is poor. Unless you live in an SRO or are homeless.
Then there was this middle-aged, middle-class white couple who talked at the begining of the ride about how adventurous and boundary crossing they were. The trip was extra long because it was Friday and there was rush hour traffic exiting and entering the cities. It was also hot because the a/c didn't work, and the driver was insane. So they began complaining. They also made racist comments about Asians. One particular comment that pissed me off was about the location where they'd bought their tickets. They laughed with superiorty about how the store had rental furniture, din sum and bought and sold TVs. "They have their fingers in every pie. It is so typical," said an anonymous passenger.
Of course I said nothing. Which embarasses me.
Then there was this middle-aged, middle-class white couple who talked at the begining of the ride about how adventurous and boundary crossing they were. The trip was extra long because it was Friday and there was rush hour traffic exiting and entering the cities. It was also hot because the a/c didn't work, and the driver was insane. So they began complaining. They also made racist comments about Asians. One particular comment that pissed me off was about the location where they'd bought their tickets. They laughed with superiorty about how the store had rental furniture, din sum and bought and sold TVs. "They have their fingers in every pie. It is so typical," said an anonymous passenger.
Of course I said nothing. Which embarasses me.
Wednesday, August 06, 2003
Here are the cast of characters that are in my life:
My family:
Thomas - My husband who hands out needles and condoms for a living; we are well-stocked w/ contraceptive devices.
My housemates in Manhattan:
Stephan - German. Quiet in an unquiet way. Sly smiles abound.
Daniel - A non-believing-in-Jesus christian, whose father's name is Jesus.
Christopher - Professional student in Philosophy. He likes women. But he is "celibate".
Kevin - Also a professional student, but in Media Studies. Currently is sporting a quaker beard.
Kara - Works for Wome's International League for Peace and Freedom at the UN. Is loud and has a laugh all her very own.
Alicia - Works for Mennonite Central Committee at the UN. She cuts hair. Rearranges furniture. Makes great plantains.
Lana - Temporary house manager. She looks perfect, even when disheveled.
Lowell - House manager on hiatus. He once made a short with a video camera looking out a subway window.
Rob - Has left but I must mention him. Canadian. Aloof. Intimate aloofness. Irons shirts with a grace I don't have.
Sherrie - Also Canadian. Getting her master's in Anthropology. Plays basketball accross the street and attempts to clean a messy room that is the size of a small closet.
My family:
Thomas - My husband who hands out needles and condoms for a living; we are well-stocked w/ contraceptive devices.
My housemates in Manhattan:
Stephan - German. Quiet in an unquiet way. Sly smiles abound.
Daniel - A non-believing-in-Jesus christian, whose father's name is Jesus.
Christopher - Professional student in Philosophy. He likes women. But he is "celibate".
Kevin - Also a professional student, but in Media Studies. Currently is sporting a quaker beard.
Kara - Works for Wome's International League for Peace and Freedom at the UN. Is loud and has a laugh all her very own.
Alicia - Works for Mennonite Central Committee at the UN. She cuts hair. Rearranges furniture. Makes great plantains.
Lana - Temporary house manager. She looks perfect, even when disheveled.
Lowell - House manager on hiatus. He once made a short with a video camera looking out a subway window.
Rob - Has left but I must mention him. Canadian. Aloof. Intimate aloofness. Irons shirts with a grace I don't have.
Sherrie - Also Canadian. Getting her master's in Anthropology. Plays basketball accross the street and attempts to clean a messy room that is the size of a small closet.
So I'm here in Boston, doing this strange thing called proton beam radiation for a brain tumor. The actual procedure only takes 15 minutes, but since I live in New York City I am staying at this crazy house, for free, with about 7 nutty radiation-taking people in Worcester. They're all older than me, mostly middle aged or at least they act like they are--except one family has their son here, and he is 11.
Things at Mass. General are your usual hospital events. I've had my appointment times changed w/out my knowledge twice; yesterday my treatment was canceled because the machine broke down. This is only my first week. I'm a little nervous about a machine breaking down that is pumping radiation into my brain. But everyone else seems calm about it, so I keep quiet.
Today I had my first reaction to the laser. A massive headache that still persists 6 hours later. I'm supposed to be vomiting later. So, things could be worse.
This afternoon a woman came by the house to take us (the women of course) to the grocery. I hate grocery shopping in general. This was nuts. I live in Manhattan with an almost hole-in-the-wall grocery a block away. Driving to this giant supermarket was a slightly shocking experience, since I hadn't been in one for over a year. I stood around staring for a while before finally diving in. I took about half an hour, sure the other women, all hardened mamas, would be done before me. At the checkout the cashier wouldn't let me write a check w/out one of those shopper saver cards. Granted, it was an out of state check and my driver's licence is still from KS though I haven't really lived there for quite an amount of time. So the manager came and took my licence, which made me nervous, and got one for me. In the middle of this a woman accidentally took my groceries. Of course I had to mention this to her. She was gracious and quite apologetic. Once I got out to the van I realized the other women were still inside. So, Annie and I hung out in the A/C'd van. My head was roaring with the headache. I'd bought some tylenol knockoff but had no water to take them with. The others took an hour and a quarter to shop!
By the way, I saved $2.15, thanks to the shopper saver's card.
Things at Mass. General are your usual hospital events. I've had my appointment times changed w/out my knowledge twice; yesterday my treatment was canceled because the machine broke down. This is only my first week. I'm a little nervous about a machine breaking down that is pumping radiation into my brain. But everyone else seems calm about it, so I keep quiet.
Today I had my first reaction to the laser. A massive headache that still persists 6 hours later. I'm supposed to be vomiting later. So, things could be worse.
This afternoon a woman came by the house to take us (the women of course) to the grocery. I hate grocery shopping in general. This was nuts. I live in Manhattan with an almost hole-in-the-wall grocery a block away. Driving to this giant supermarket was a slightly shocking experience, since I hadn't been in one for over a year. I stood around staring for a while before finally diving in. I took about half an hour, sure the other women, all hardened mamas, would be done before me. At the checkout the cashier wouldn't let me write a check w/out one of those shopper saver cards. Granted, it was an out of state check and my driver's licence is still from KS though I haven't really lived there for quite an amount of time. So the manager came and took my licence, which made me nervous, and got one for me. In the middle of this a woman accidentally took my groceries. Of course I had to mention this to her. She was gracious and quite apologetic. Once I got out to the van I realized the other women were still inside. So, Annie and I hung out in the A/C'd van. My head was roaring with the headache. I'd bought some tylenol knockoff but had no water to take them with. The others took an hour and a quarter to shop!
By the way, I saved $2.15, thanks to the shopper saver's card.
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