Years ago a friend of mine wrote an essay about her experience with in vitro fertilization, and said that indeed that it was possible to be just a little bit pregnant. I think I'm a little bit menopausal. Which is more menopausal than peri-menopausal. Ten days ago I had the FSH (follicle-stimulating hormone) test and also had my fibroids ultrasounded. I thought the elusive gyne would call me with results, but he proved to live up to his name. I finally called his office yesterday and today and then he called back. He said sometimes it takes a while for the ultrasound results to get to him and that he was sorry not to get back to me sooner. He said the fibroids are pretty much the same size as last year, that the largest is 2-1/2 centimeters or the size of a golf ball, and that the test indicated that I was probably menopausal. We'll wait until I get results from genetic tests before doing anything further. Such as surgery. If the test shows I have the breast-ovarian cancer gene, I'll donate my second ovary to the hospital. If anyone wants the stale eggs of Cancer Bitch, let me know. They're cheaper by the dozen.
I thought golf balls were bigger than 2-1/2 centimeters, and L, who was a high school letterman in golf, confirmed that. We figure that the gyne just doesn't play golf. Again I'm moved to quote Marjorie Gross: "So I had a hysterectomy, and they found a tumor that they said was the size of an orange. (See, for women they use the citrus-fruit comparison; for men it's sporting goods: 'Oh it's the size of a softball,' or, in England, a cricket ball.) " She wrote that in 1996. Now in the 21st century, I guess doctors are more gender-neutral in their comparisons.
I feel like I should be menopausal by now because it seems everybody else is. It's a relief in a way because then I don't have to fear that I'll feel feel worse with menopause. I know that's a dangerous thing to say. It could always get worse. It's hard to distinguish hot flashes from menopause with those that are a side effect of chemo. My head is often clammy. Luckily, my scalp decoration is not water-soluable.
Last night my friend S added some Picasso-esque doves to the top and back of my head. The plan was to fill in some of the designs with henna, which she did, though she was hampered by the lack of a crucial piece of henna-design equipment. Either I misplaced it or it wasn't in the package sent by the good people of Earthhenna.com.
Yesterday I went for a mammogram of my right breast at the Fancy breast cancer factory. The tech showed it to a radiologist, and reported that it looked fine. I'm not due for another mammogram until next year. Then I had an appointment with my surgeon. The physician assistant measured my arms and said that my left (mastectomy) arm was only 1 centimeter wider than the right one, which is an insignifant difference, not an indicator of lymphodema. The most confident and competent of the surgery Fellows came in and led me through my paces (hold up arms high, put your hands on your hips, breathe normally, take a deep breath) and she palpated my breast. Then the surgeon came in and did pretty much the same. Her hands were also cold. She asked, of course, if I was hanging in there (I think the Fellows aren't allowed to ask that), and she asked how things were going, saying she read about me in the paper. I didn't ask if she was reading this blog. That would seem to cross some line. Then I'd have to say, What did you think of my description of you? (Which was that she was warm and business-like. Though she does, as noted, have that widespread "hanging in there" tic.) I'm supposed to get an MRI of the right breast next month. I went into a little room to schedule it. The scheduler said that she herself had a mass in one breast that she was going to have an ultrasound to check it out. Her aunt had just died of breast cancer (that had spread to her spine and brain). One of the last things her aunt said to her was to get it looked at. Her aunt was a fighter, she said. The aunt had been living with breast cancer for 13 years. When the cancer went to her brain it put her in a coma. I hope that for most of those 13 years she was in remission.
Friday, June 29, 2007
Wednesday, June 27, 2007
I Feel Gooood (So why do I feel so bad?)
I usually go through a 36-hour “detox” period after checking out of Hotel Hope. Nausea. Lackluster appetite. Low energy.
Not so this time. I checked out on Monday afternoon and hit the ground running with none of the usual chemo side effects.
Ordinarily, this would be a good thing, but not so this time. My boundless energy and hearty appetite underscore the reality that I received a reduced dosage of chemo during Round 4. My blood counts simply couldn’t take the assault of a full-on regimen.
What’s more, the plans are moving forward for the auto stem cell transplant without the benefit of Rounds 5 and 6. I met yesterday with my nurse coordinator, and July’s calendar is filling up fast with tests (bone marrow biopsy, PET scan, CT scan), clinic appointments, Hickman catheter insertion, Hickman training, a small dose of chemo, ten days of injections and, ultimately, the stem cell harvest.
If all goes “according to plan,” I could be hunkered down for my month-long stay at Hotel Hope before my birthday on August 15. Of course, a lot could happen to take me off course, but . . . one day at a time, one day at a time.
Not so this time. I checked out on Monday afternoon and hit the ground running with none of the usual chemo side effects.
Ordinarily, this would be a good thing, but not so this time. My boundless energy and hearty appetite underscore the reality that I received a reduced dosage of chemo during Round 4. My blood counts simply couldn’t take the assault of a full-on regimen.
What’s more, the plans are moving forward for the auto stem cell transplant without the benefit of Rounds 5 and 6. I met yesterday with my nurse coordinator, and July’s calendar is filling up fast with tests (bone marrow biopsy, PET scan, CT scan), clinic appointments, Hickman catheter insertion, Hickman training, a small dose of chemo, ten days of injections and, ultimately, the stem cell harvest.
If all goes “according to plan,” I could be hunkered down for my month-long stay at Hotel Hope before my birthday on August 15. Of course, a lot could happen to take me off course, but . . . one day at a time, one day at a time.
Tuesday, June 26, 2007
Cancer Bitch Meets the City Clerk
Warning: This post contains minutiae about red tape.
Today I went downtown so that the endodontist could finish his part in the root canal. It was uneventful, except that I found out why he works only one day a week in the office. The rest of the time he teaches at a dental school. That reassured me and it explained, too, his play-by-play about what he's doing. I like the play-by-play. I appreciate it, and prefer it to small talk about other stuff. And I love it when dentists talk about gutta-percha, which sounds so exotic because its word origin is Malay. It makes me think of British colonies and Mary Poppins. I don't think there's gutta-percha in the Poppins books; I think I'm thinking of plasticine, which is modeling clay, but I have that association anyway.
After the root canal I walked across the street to the Cultural Center, and leaned against a bronze statue of a cow while I called the city clerk's office to see if I could come by and get my annual zoned parking permit. People kept coming by to read the plaque by the cow and I felt self-conscious but I wanted to lean on something in case I had to write something down.
I'll try not to make this tedious. Since I live in a high-density area, most of the streets in the neighborhood require parked cars to have a special sticker. You have to be a resident to get the annual sticker. Residents can also buy one-day stickers to give to guests. (In February I wrote about trying to buy more than one book of stickers at a time because of my impending surgery. I failed.) Every June I get the annual sticker for $25, usually by mail, but at least once by going to the alderman's office. The tricky thing is that you have to buy the city's annual sticker first. I bought that on-line last week, and printed out the receipt. On the phone, I waited and listened and punched several buttons, and finally got a live person who said that the receipt would count as proof of purchase, and that there wasn't a wait.
So I walked the few blocks to the City and County Building and found people lined up in the hallway. A staff person stopped me at the entrance to the clerk's office and gave me forms to fill out and said to go to Window 8. The line was short there. The woman behind me in line said, That's the city clerk, walking in the middle of the room. I saw the back of a man in a white shirt. When I got to the counter, I was told that my address wasn't in the system and I needed a letter from my alderman to get the permit. I explained that I'd never had to do this before. The woman said I could go to the third floor and get the letter from the alderman if he was there. Sigh. I was afraid that I'd go up there and he wouldn't be there and I'd be a frustrated and hungry Cancer Bitch. I turned to go and saw the man in the white shirt right there. I asked, Are you the clerk? just to be sure, and told him my story.
He explained that I live on a "buffer street," which does not require the parking permits, and so I'm not eligible for the annual permit. I told him I'd always gotten the permit, etc., etc. I couldn't remember if I'd received a green permit form in the mail. We ended up going around and through and downstairs and stopping at a worker's computer, where she discovered that one of the people in my building had the residential permit. That was enough for the clerk and we went back upstairs and he told me to wait while he went behind a door. About five minutes later he returned with my permit and *two* packets of guest permits (which I paid for). I asked him if I should call the alderman so other people wouldn't have to go through this, and he said I should call J on his own staff.
A moment later J appeared by chance, and I told him my tale not of woe exactly, but of annoyance (though I was calm and not whiny or annoyed). He explained that in the past people who live on buffer streets have had to get the alderman's letter, but sometimes that was waived because it was too much trouble. Next year it should all be worked out.
So--if you live on a buffer street, be sure to contact your alderman.
I felt justified in asking the boss to help me, probably more justified than usual because I have cancer. But he's a public servant, right? I don't know if it's obvious that I'm cancerous. I'm bald except for little stubble poking up. My head decorations were fading and I didn't have my Cancer Sucks pin on my backpack. I told him I voted for him. Which is true. I urge you to, also. His name is Miguel del Valle, and he will probably be running unopposed.
But can you imagine *wanting* to be head of all this permit-issuing and form-sending-out and tending to frustrated people in lines? Of course, being city clerk is about being part of the Democratic power structure. Del Valle was a state senator before this and who wants to spend time in Springfield? (Our governor hates going there. If he weren't so unpopular he'd probably propose making Chicago the state capital.) City clerk might lead to something else. The *county* clerk is David Orr, who was interim mayor for about one week in 1987 after Harold Washington died; he got that job because he'd been the alderman who was the vice mayor. Orr was a reformer, a progressive, and he stepped aside to let an African-American be elected acting mayor (by the city council); it didn't seem right that a white guy would be mayor after Harold Washington. The affable (African-American) acting mayor was later elected by the voters. Was Orr too nice? He's now in charge of all the county's endless forms about everything: death and taxes, elections, marriages, births. A friend of mine, a political animal, says that Orr was afraid of risk. You could say he sacrificed himself for the good of the city. If I were David Orr, I'd keep kicking myself.
Today I went downtown so that the endodontist could finish his part in the root canal. It was uneventful, except that I found out why he works only one day a week in the office. The rest of the time he teaches at a dental school. That reassured me and it explained, too, his play-by-play about what he's doing. I like the play-by-play. I appreciate it, and prefer it to small talk about other stuff. And I love it when dentists talk about gutta-percha, which sounds so exotic because its word origin is Malay. It makes me think of British colonies and Mary Poppins. I don't think there's gutta-percha in the Poppins books; I think I'm thinking of plasticine, which is modeling clay, but I have that association anyway.
After the root canal I walked across the street to the Cultural Center, and leaned against a bronze statue of a cow while I called the city clerk's office to see if I could come by and get my annual zoned parking permit. People kept coming by to read the plaque by the cow and I felt self-conscious but I wanted to lean on something in case I had to write something down.
I'll try not to make this tedious. Since I live in a high-density area, most of the streets in the neighborhood require parked cars to have a special sticker. You have to be a resident to get the annual sticker. Residents can also buy one-day stickers to give to guests. (In February I wrote about trying to buy more than one book of stickers at a time because of my impending surgery. I failed.) Every June I get the annual sticker for $25, usually by mail, but at least once by going to the alderman's office. The tricky thing is that you have to buy the city's annual sticker first. I bought that on-line last week, and printed out the receipt. On the phone, I waited and listened and punched several buttons, and finally got a live person who said that the receipt would count as proof of purchase, and that there wasn't a wait.
So I walked the few blocks to the City and County Building and found people lined up in the hallway. A staff person stopped me at the entrance to the clerk's office and gave me forms to fill out and said to go to Window 8. The line was short there. The woman behind me in line said, That's the city clerk, walking in the middle of the room. I saw the back of a man in a white shirt. When I got to the counter, I was told that my address wasn't in the system and I needed a letter from my alderman to get the permit. I explained that I'd never had to do this before. The woman said I could go to the third floor and get the letter from the alderman if he was there. Sigh. I was afraid that I'd go up there and he wouldn't be there and I'd be a frustrated and hungry Cancer Bitch. I turned to go and saw the man in the white shirt right there. I asked, Are you the clerk? just to be sure, and told him my story.
He explained that I live on a "buffer street," which does not require the parking permits, and so I'm not eligible for the annual permit. I told him I'd always gotten the permit, etc., etc. I couldn't remember if I'd received a green permit form in the mail. We ended up going around and through and downstairs and stopping at a worker's computer, where she discovered that one of the people in my building had the residential permit. That was enough for the clerk and we went back upstairs and he told me to wait while he went behind a door. About five minutes later he returned with my permit and *two* packets of guest permits (which I paid for). I asked him if I should call the alderman so other people wouldn't have to go through this, and he said I should call J on his own staff.
A moment later J appeared by chance, and I told him my tale not of woe exactly, but of annoyance (though I was calm and not whiny or annoyed). He explained that in the past people who live on buffer streets have had to get the alderman's letter, but sometimes that was waived because it was too much trouble. Next year it should all be worked out.
So--if you live on a buffer street, be sure to contact your alderman.
I felt justified in asking the boss to help me, probably more justified than usual because I have cancer. But he's a public servant, right? I don't know if it's obvious that I'm cancerous. I'm bald except for little stubble poking up. My head decorations were fading and I didn't have my Cancer Sucks pin on my backpack. I told him I voted for him. Which is true. I urge you to, also. His name is Miguel del Valle, and he will probably be running unopposed.
But can you imagine *wanting* to be head of all this permit-issuing and form-sending-out and tending to frustrated people in lines? Of course, being city clerk is about being part of the Democratic power structure. Del Valle was a state senator before this and who wants to spend time in Springfield? (Our governor hates going there. If he weren't so unpopular he'd probably propose making Chicago the state capital.) City clerk might lead to something else. The *county* clerk is David Orr, who was interim mayor for about one week in 1987 after Harold Washington died; he got that job because he'd been the alderman who was the vice mayor. Orr was a reformer, a progressive, and he stepped aside to let an African-American be elected acting mayor (by the city council); it didn't seem right that a white guy would be mayor after Harold Washington. The affable (African-American) acting mayor was later elected by the voters. Was Orr too nice? He's now in charge of all the county's endless forms about everything: death and taxes, elections, marriages, births. A friend of mine, a political animal, says that Orr was afraid of risk. You could say he sacrificed himself for the good of the city. If I were David Orr, I'd keep kicking myself.
Susan hits the Spot on Friday
Now that Susan's done with another round of chemo, the race is on to get her innards in shape for her next visit to Hotel Hope. As you may have gathered, cancer is a full-time gig for Susan, and she's missed seeing friends minus the drug-induced fog of chemo.
So, she's going to park her pole-dancing derrière at The Taco Spot on Friday and enjoy a leisurely, late lunch.
While there is no medical evidence that spicy shrimp tacos boost platelet production, why take a chance? Better for her to eat tacos now in case researchers discover a correlation later!
I, your faithful cancer correspondent, will be there as well, most likely up to my neck in nachos.
Why don't you play hooky and stop by for a visit and/or lunch? (If we're lucky, the hunks from the fire station across the street will stroll in.)
Here are the details:
Friday, June 29
1 to 2:30 p.m.
Stop by anytime during Susan's "office hours"
The Taco Spot
2006 Colorado Bl. Eagle Rock
Here's the menu.
There's street parking and a small lot in back. This is a BYOB (buy your own burrito), very casual gathering. Seriously, wear your flip-flops.
If you think you'll be dropping by, just email Susan or leave a comment here, and we'll corral enough chairs. The restaurant should be emptying out by 1, so it'll be quiet enough to talk, possibly about the aforementioned muy caliente fire fighters.
Oh, and Susan's progress, of course. We can chat about that, too.
Sunday, June 24, 2007
I'm Too Sexy for my Hospital Gown
Come and Get 'Em - Plums & Apricots Are Ripe
I made this easy-to-prepare apricot and plum clafoutis from a recipe on the Williams Sonoma website for Father's Day. I'd never heard of a "clafoutis" before, but it's a like a French version of the humble cobbler - just a little more refined with brandy mixed in with the fruit and lemon zest added to the batter.
If you'd like to try your hand at a clafoutis, or if you'd like to bite into a freshly picked plum or apricot, please let me know. I'll be home from the hospital on Monday.
Annette, a fellow freecycler who posted that she's looking for apricots and plums, will be coming by on Wednesday to share the bounty. It turns out that she's also a one-year cancer survivor and received her diagnosis when her daughter was just one month old.
Taking Taxol/I feel petty, oh, so petty
What can I say about chemotherapy that hasn't already been said, in a million pop songs? That's a line from an essay by Marjorie Gross. I don't know what chemo-poison she was referring to. The chemotherapy agent of the hour, of my hour of discontent, is Taxol. Sounds like toxic. It seems like toxic. A drug that's injected in your veins that makes your bones hurt. Not like when you were little and your mother would mention offhand to your doctor you felt "growing pains." No, this is an ache in the joints and along the bones, that seems maybe it's not so bad, it's not acute, but it's there. Deep and unrelieved, and it makes you cry during yoga when you bury your head for child's pose. Because it doesn't seem like it should hurt so much. And you cry partly because you suspect you're exaggerating the hurt, and partly because of the hurt itself. And you look the same on the outside as you did the day before, when it didn't hurt, when all you had was apprehension about the possibility of this bone pain. But it's real, and it's from the wiping out of red blood cells, and it's there in the pink oncology binder, in black and white, under "side effects." And the nurse told you about it, that it might happen. It's the subtlety of it, as cruel as meangirl gossip, almost not-there, but there. And in your teeth, making them feel loose, and in your gums and a sharp sore on the side of your tongue, and an ache in your back, and you feel it in your endometrium, like a bad cramp, though there aren't bones there.
***
After yoga Friday I drove downtown to pick up L so we could meet V for dinner in the South Loop. When he got in the car to take my place (I hate driving) I was crying and we pulled to the corner and I told him I felt so bad. I had picked up a magazine at the park district where I do yoga, so I'd have something to read while L put me on the L to go back home, and he went on to dinner with V. He took me home and called V to cancel. I was so pathetic, so grateful that he was driving me home. He had planned to go on to Gary after dinner. He has a house there. We stopped at Blockbuster and got four DVDs: Curb Your Enthusiasm, first season; Sex and the City, second season; The Truth About Cats and Dogs and Sweet Home Alabama. At home I settled on the couch and he unloaded the dishwasher and did other household chores while I watched Sex and the City, which he can't stand but gets sucked into anyway. I took acetaminophen, which he said I should have been taking instead of ibuprofen. And lo and behold, it was the pain-reliever of choice in the pink oncology department binder from Fancy Hospital. I felt better and also whiny and self-indulgent. Friday he asked me what number the pain was, from 1-10, and I said 3, thinking that 3 sounds very small. Like nothing.
Now it's Sunday evening and what I've done this weekend is Nothing, meaning watched the videos and read some and slept. And wrote a pissy letter to the editor about the whitewashing of Nicaraguan history in the Travel section of the paper. I did what dogs do, which is lie around and nap and then get up and sleep. If dogs read, I'd be the perfect dog. L is in Gary right now. This weekend he has told me on the phone and in person that I'm silly to feel guilty for doing nothing, aka Taking Care of Myself. I was invited to a BBQ, which I've skipped, and was supposed to go to a Muslim festival to help publicize a Muslim-Jewish poetry anthology I'm helping put together. You have cancer! he tells me, and I say, Supposedly the cancer is gone, but he counters that I'm going through cancer treatment, and what I'm feeling is because of that treatment. Which is true. The bone-pain has lessened much, and I'm wondering if what I felt is what it's like when the cancer returns and it's in your bones. And that scares me. The fact of it returning to my bones scares me.
The pain is down to 1, or 0 in some places. The side of my tongue is still sore despite using this special chemo mouthwash cocktail I got at the pharmacy for $31, and oral analgesic ointment. There are so many pains a person could have, so many acute pains. The world is awash in suffering. Would I get used to it if I always felt the way I did on Friday? Would I want to kill myself? Once when I ran out of BuSpar tablets I felt so upset, so weepy and full of self-loathing, that I thought if I felt that way all the time I would kill myself. I was taking the generic for BuSpar and concluded it didn't work for me. But now I take the generic all the time because our new insurance plan won't pay for the name brand. What is the lesson of that?
***
Last night I dreamed I was looking for job postings at the WRU Press office to pass on to our grad students, and I took off my dress to do it, because that was the protocol. I thought. But I was wrong. And I felt embarrassed to be there, that I didn't belong there, and put my dress back on, and went to look for more job postings in the journalism department, and looked for my mail box there, but it wasn't there. I didn't belong. I didn't belong anywhere, even though WRU Press had published my first book (in the dream and in real life). In real life, too, my faculty mail box disappeared from the journalism department many years ago, because I had started teaching non-credit instead of credit journalism classes, and the Decider of Mail Boxes had decided I didn't deserve a box. Though there were lots of empty boxes. I eventually got hold of an empty cardboard box and put it on top of the mail boxes, with my name on it. That was taken away and then I got another box and labeled it ETAOIN SHRDLU, which is an old journalism (nonsense) phrase from the days of Linotype. I told a good friend about all this a few years after and he told me how terrible I was. He used the word asshole, which was the first and only time (I think) anyone has called me that, to my face. When he said that I felt I'd been petty and immature. It is unwise in academia to be petty and immature unless you have tenure.
But hey, he, the Decider, started it. And he removed the ETAOIN SHRDLU box, too. And I needed a box, dear readers, because I was teaching a for-credit undergraduate interdisciplinary class that met in a residential college I didn't have a key to. The students needed a place to drop off and pick up papers. We ended up using a student mail box (down the hall from my erstwhile one) and that worked out fine. OK, you can argue that the journalism department didn't owe me a box for the use of liberal arts students, but it would have been a nice courtesy, wouldn't it? And I did receive mail there occasionally.
I still have a mail box problem. I'm a part-time, year-round employee at WRU but my mail box downtown is removed during the quarters I'm not teaching downtown. I have tried repeatedly to change this, but the person who makes and inserts the mail box labels goes by a book of faculty names she gets every quarter and that's that. There's a separate area for full-time, year-round employee mail boxes, but it just so happens that there is no space there for an extra box. The assistant dean tried to intervene once but he couldn't get me a box. Sometimes I make my own mail box label and feel like an illegal squatter and wonder if the mail sorters will ignore it because the label isn't like the others.
This non-box-ness makes me feel disappeared. I try not to think about it. I had a permanent box in the suburban WRU mail room for about a year then one quarter it too disappeared. It was easy to get another label there and it was clear it was an oversight. Thank goodness.
Until I had these real estate crises, I used to think the comic strip Dilbert was ridiculous and unrealistic.
***
After yoga Friday I drove downtown to pick up L so we could meet V for dinner in the South Loop. When he got in the car to take my place (I hate driving) I was crying and we pulled to the corner and I told him I felt so bad. I had picked up a magazine at the park district where I do yoga, so I'd have something to read while L put me on the L to go back home, and he went on to dinner with V. He took me home and called V to cancel. I was so pathetic, so grateful that he was driving me home. He had planned to go on to Gary after dinner. He has a house there. We stopped at Blockbuster and got four DVDs: Curb Your Enthusiasm, first season; Sex and the City, second season; The Truth About Cats and Dogs and Sweet Home Alabama. At home I settled on the couch and he unloaded the dishwasher and did other household chores while I watched Sex and the City, which he can't stand but gets sucked into anyway. I took acetaminophen, which he said I should have been taking instead of ibuprofen. And lo and behold, it was the pain-reliever of choice in the pink oncology department binder from Fancy Hospital. I felt better and also whiny and self-indulgent. Friday he asked me what number the pain was, from 1-10, and I said 3, thinking that 3 sounds very small. Like nothing.
Now it's Sunday evening and what I've done this weekend is Nothing, meaning watched the videos and read some and slept. And wrote a pissy letter to the editor about the whitewashing of Nicaraguan history in the Travel section of the paper. I did what dogs do, which is lie around and nap and then get up and sleep. If dogs read, I'd be the perfect dog. L is in Gary right now. This weekend he has told me on the phone and in person that I'm silly to feel guilty for doing nothing, aka Taking Care of Myself. I was invited to a BBQ, which I've skipped, and was supposed to go to a Muslim festival to help publicize a Muslim-Jewish poetry anthology I'm helping put together. You have cancer! he tells me, and I say, Supposedly the cancer is gone, but he counters that I'm going through cancer treatment, and what I'm feeling is because of that treatment. Which is true. The bone-pain has lessened much, and I'm wondering if what I felt is what it's like when the cancer returns and it's in your bones. And that scares me. The fact of it returning to my bones scares me.
The pain is down to 1, or 0 in some places. The side of my tongue is still sore despite using this special chemo mouthwash cocktail I got at the pharmacy for $31, and oral analgesic ointment. There are so many pains a person could have, so many acute pains. The world is awash in suffering. Would I get used to it if I always felt the way I did on Friday? Would I want to kill myself? Once when I ran out of BuSpar tablets I felt so upset, so weepy and full of self-loathing, that I thought if I felt that way all the time I would kill myself. I was taking the generic for BuSpar and concluded it didn't work for me. But now I take the generic all the time because our new insurance plan won't pay for the name brand. What is the lesson of that?
***
Last night I dreamed I was looking for job postings at the WRU Press office to pass on to our grad students, and I took off my dress to do it, because that was the protocol. I thought. But I was wrong. And I felt embarrassed to be there, that I didn't belong there, and put my dress back on, and went to look for more job postings in the journalism department, and looked for my mail box there, but it wasn't there. I didn't belong. I didn't belong anywhere, even though WRU Press had published my first book (in the dream and in real life). In real life, too, my faculty mail box disappeared from the journalism department many years ago, because I had started teaching non-credit instead of credit journalism classes, and the Decider of Mail Boxes had decided I didn't deserve a box. Though there were lots of empty boxes. I eventually got hold of an empty cardboard box and put it on top of the mail boxes, with my name on it. That was taken away and then I got another box and labeled it ETAOIN SHRDLU, which is an old journalism (nonsense) phrase from the days of Linotype. I told a good friend about all this a few years after and he told me how terrible I was. He used the word asshole, which was the first and only time (I think) anyone has called me that, to my face. When he said that I felt I'd been petty and immature. It is unwise in academia to be petty and immature unless you have tenure.
But hey, he, the Decider, started it. And he removed the ETAOIN SHRDLU box, too. And I needed a box, dear readers, because I was teaching a for-credit undergraduate interdisciplinary class that met in a residential college I didn't have a key to. The students needed a place to drop off and pick up papers. We ended up using a student mail box (down the hall from my erstwhile one) and that worked out fine. OK, you can argue that the journalism department didn't owe me a box for the use of liberal arts students, but it would have been a nice courtesy, wouldn't it? And I did receive mail there occasionally.
I still have a mail box problem. I'm a part-time, year-round employee at WRU but my mail box downtown is removed during the quarters I'm not teaching downtown. I have tried repeatedly to change this, but the person who makes and inserts the mail box labels goes by a book of faculty names she gets every quarter and that's that. There's a separate area for full-time, year-round employee mail boxes, but it just so happens that there is no space there for an extra box. The assistant dean tried to intervene once but he couldn't get me a box. Sometimes I make my own mail box label and feel like an illegal squatter and wonder if the mail sorters will ignore it because the label isn't like the others.
This non-box-ness makes me feel disappeared. I try not to think about it. I had a permanent box in the suburban WRU mail room for about a year then one quarter it too disappeared. It was easy to get another label there and it was clear it was an oversight. Thank goodness.
Until I had these real estate crises, I used to think the comic strip Dilbert was ridiculous and unrealistic.
Friday, June 22, 2007
Terminal Embarrassment
When I first got my mantle cell lymphoma diagnosis , I thought, "Oh my god - this is how I'm gonna' die."
Then I heard about the treatment. You know you're in trouble when your regimen includes the word "hyper," as in "hyper CVAD." For a while, I was convinced that the chemo would do me in.
But when I checked in to Hotel Hope and met the IV pole, the contraption that would be tethered to me 24-7, I sensed that the "pole of death" could place first in a trifecta race to the grave.
In spite of that lousy first impression, the pole and I eventually became friends, gliding gracefully through the halls and pole dancing effortlessly in the lobby.
Until this morning. On the way back from the bathroom, I yanked him over his cord. He came crashing down to the floor and bonked my bald head in the process. I screamed, "Help, help, get him off of me," until two nurses came to my rescue. The whole thing reminded me of a blind date I had in college.
After I regained my composure and nurses checked my vitals, I got right to the heart of the matter, "This isn't going into my chart, is it?"
"You betcha it is," they laughed, as they took off down the hallway spreading the tale.
Forget cancer and chemo. Can a person die from embarrassment?
Then I heard about the treatment. You know you're in trouble when your regimen includes the word "hyper," as in "hyper CVAD." For a while, I was convinced that the chemo would do me in.
But when I checked in to Hotel Hope and met the IV pole, the contraption that would be tethered to me 24-7, I sensed that the "pole of death" could place first in a trifecta race to the grave.
In spite of that lousy first impression, the pole and I eventually became friends, gliding gracefully through the halls and pole dancing effortlessly in the lobby.
Until this morning. On the way back from the bathroom, I yanked him over his cord. He came crashing down to the floor and bonked my bald head in the process. I screamed, "Help, help, get him off of me," until two nurses came to my rescue. The whole thing reminded me of a blind date I had in college.
After I regained my composure and nurses checked my vitals, I got right to the heart of the matter, "This isn't going into my chart, is it?"
"You betcha it is," they laughed, as they took off down the hallway spreading the tale.
Forget cancer and chemo. Can a person die from embarrassment?
Thursday, June 21, 2007
Hospital again
Not much to post and being back home it is hard to find the time between doctors visits and Dora the Explorer :-)
Back to the Spa (Texas Spa) in the morn. i.e. the hospital for a few days or until I get fed up and break out like the Stanford Spa.
Back to the Spa (Texas Spa) in the morn. i.e. the hospital for a few days or until I get fed up and break out like the Stanford Spa.
Survivor Luncheon
Today I attended my 4th cancer survivor luncheon. It is hosted by a group practice of several oncologists at a very elegant hall, it is a yearly event. It has become over the last several years a sort of landmark in my survivor journey.
I received the first invitation to the luncheon only a few months after my MOAS surgery (cytoreduction surgery dubbed by an appendix cancer warrior as the "Mother Of All Surgeries" years ago). I'd just finished peritoneal chemotherapy and had only just begun my IV chemotherapy. I was still in my head a "cancer patient". I was a long way from being a cancer survivor. I didn't attend.
The next year I looked at the invitation for a long time trying to decide if I could attend the event, and I still couldn't. In part I still didn't feel that I'd "survived" cancer, I'd just finished chemotherapy. I'd also been focusing on moving past cancer. I didn't want to define myself by cancer. I didn't want to make cancer part of my social experience, maybe? I wanted to leave it all behind and return to my "normal" life (I was naive, I still believed you could go back to "normal" after cancer).
The third year I was invited I attended, alone. I didn't invite a guest as I wanted to be able to duck out if I felt uncomfortable. As it turned out, I had a great time and loved the other survivors I dined with.
The fourth year, I not only wanted to attend, but wanted to contribute. I offered to provide dinner music and to speak. I'd never played piano at an event like this one, attended by several hundred people at a very elegant hall, but hey, after a cancer battle, stage fright was the least of my worries. Many of my old fears had become insignificant in the face of a life and death battle. So, that year, I played my keyboard, spoke, and had a great time. This year and last, I've attended and also played dinner music for the event.
I love the survivor banquet now. I hope to attend for many more years. I now wouldn't leave the community of cancer survivors for anything. I love being with others who have survived cancer, they are in many cases my favorite people to be around. There's so much we can say to each other that we can't say to friends and family members. We share a history, we share a struggle, we share a profound and life changing experience. We understand each other.
I am proud now to be a part of the cancer survivor community.
I received the first invitation to the luncheon only a few months after my MOAS surgery (cytoreduction surgery dubbed by an appendix cancer warrior as the "Mother Of All Surgeries" years ago). I'd just finished peritoneal chemotherapy and had only just begun my IV chemotherapy. I was still in my head a "cancer patient". I was a long way from being a cancer survivor. I didn't attend.
The next year I looked at the invitation for a long time trying to decide if I could attend the event, and I still couldn't. In part I still didn't feel that I'd "survived" cancer, I'd just finished chemotherapy. I'd also been focusing on moving past cancer. I didn't want to define myself by cancer. I didn't want to make cancer part of my social experience, maybe? I wanted to leave it all behind and return to my "normal" life (I was naive, I still believed you could go back to "normal" after cancer).
The third year I was invited I attended, alone. I didn't invite a guest as I wanted to be able to duck out if I felt uncomfortable. As it turned out, I had a great time and loved the other survivors I dined with.
The fourth year, I not only wanted to attend, but wanted to contribute. I offered to provide dinner music and to speak. I'd never played piano at an event like this one, attended by several hundred people at a very elegant hall, but hey, after a cancer battle, stage fright was the least of my worries. Many of my old fears had become insignificant in the face of a life and death battle. So, that year, I played my keyboard, spoke, and had a great time. This year and last, I've attended and also played dinner music for the event.
I love the survivor banquet now. I hope to attend for many more years. I now wouldn't leave the community of cancer survivors for anything. I love being with others who have survived cancer, they are in many cases my favorite people to be around. There's so much we can say to each other that we can't say to friends and family members. We share a history, we share a struggle, we share a profound and life changing experience. We understand each other.
I am proud now to be a part of the cancer survivor community.
Platelets Behaving Nicely
Hurrah! It's finally happened.
My platelets exceeded the 100,000 count benchmark and rose to 116,000. My bed and pole are waiting for me at Hotel Hope, so I'm off and running.
My platelets exceeded the 100,000 count benchmark and rose to 116,000. My bed and pole are waiting for me at Hotel Hope, so I'm off and running.
Wednesday, June 20, 2007
All in All, I'd Rather Have a Puppy
Back to Fancy Hospital today for an ultrasound to check on my uterine fibroids, and just in the next set of rooms, a blood test to determine my FSH level, or follicle-stimulating hormone, though, as I said earlier, the test is supposedly inaccurate. It was odd to get the ultrasound because L, his daughter R and I had just seen Knocked Up on Sunday for Father's Day. The pregnant woman and her impregnator go to a gyne and look at the ultrasound screen together and see the embryo. So when I looked at the monitor I half-expected to see a little curled animal of my own, but there was a black space capsule instead. Empty. I started thinking I would be happy to be carrying a dog. A nice little hairless pre-dog that would attain fur before it slipped its way out. But seems kind of gross, fur sticking to my intimate insides.
I dreamed once, about 20 years ago, that I was giving birth to cats. It didn't seem strange inside the dream, but it did afterwards. They kept coming out, one after the other. I don't remember whether I was licking them. I may have.
What does not kill me makes me stranger.
The Boyish Gyne is supposed to call to tell me whether my fibroids are growing or not growing and whether I am still peri- or am full-fledged meno-pausal. And then what?
It is never just one thing. It is one and then follow-up and more and more. And then it's time to do the wash again and water the plants.
I dreamed once, about 20 years ago, that I was giving birth to cats. It didn't seem strange inside the dream, but it did afterwards. They kept coming out, one after the other. I don't remember whether I was licking them. I may have.
What does not kill me makes me stranger.
The Boyish Gyne is supposed to call to tell me whether my fibroids are growing or not growing and whether I am still peri- or am full-fledged meno-pausal. And then what?
It is never just one thing. It is one and then follow-up and more and more. And then it's time to do the wash again and water the plants.
Tuesday, June 19, 2007
The tongue,
said the endodontist this morning, is a very curious animal.
This is true. It has its own obsessions and compulsions. The tooth (number 13, third from the left, on top, next to the molars), had broken off after phase one of his root canal. Part of the remaining tooth had formed a point, which my tongue kept touching and feeling until I had a sore on it. The mild endodontist shaved off the point and will finish with the root canal next week. Then I'll get a crown from the dentist. I don't know why he didn't do the rooting out of the canal and the filling of it in one fell swoop. I should ask. I also don't know why he works downtown only on Tuesdays.
He told me his brother is an oncologist in Washington State who had cancer in his tonsils and directed his own treatment.
The cancer cell has its compulsions and obsessions. We are told: "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. The cancer cell does not get the social cues. It cannot read the faces of the other cells. It does not know when to stop reproducing iteself, when to stop telling that story one more time about its cross-country trip in a beat-up station wagon. Because of this we need to ingest poison to stop the cancer cell, and in so doing, the toxin stops other harmless and helpful cells in their tracks. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).
Cancer cells are uninhibited. They put our lampshades on their heads and run through public fountains. But these same frolicking, out-of-control cancer cells are trying to kill us. In defense, we try to induce suicide. Can you blame us?
Today was chemo Round 5, the first dose of Taxol, which is derived from the Pacific yew. We have some kind of yew bushes out front, which we prune. I don't know what kind they are. Taxol is preserved with a chemical called cremo-something, which a few people are allergic to. The nurses told me that a reaction is rare, but they laid out epinephrine and benadryl on the table nearby just in case. They'd already given me some benadryl in the drip. Reactions include feeling very hot or having constricted breathing. It happens in the first few minutes.
After a few minutes on the drip I felt blood rush to my head and ears and they were hot hot hot, and there was a heavy foot on my chest and it was hard to breathe. I reported this calmly because they’d said they were prepared. They took me off the Taxol and gave me more benadryl and put oxygen cannula in my nostrils. I felt better. Then a few minutes later I had what felt like menstrual cramps, and a nurse gave me a heat pack. The cramps went away in about ten minutes.
Was this anaphylactic shock? I asked. No, said the nurse, it was anaphylaxis. Which, from what I read, is serious and life-threatening. But not shock.
So it may not end with a whimper, or a bang, but with a closing up.
*****
Waiting for the L (train, not husband) today to go to Fancy Hospital I saw a guy in a very dark suit, white shirt, red tie with diagonal red and white stripes. Something odd about his outfit--so very severe, formal and self-conscious. He had opened a black leather folder to reveal a list, handwritten on yellow legal paper. Tell about... Tell about your… I presumed they were interview questions he was going over. His outfit was too perfect and plain. He did not seem proud of his suit. It was not ill-fitting but didn't seem tailor-made, either. Who wears white shirts any more, and who wears a black suit when it’s 80 degrees? I don’t see many people in suits on the L, but that’s because I don’t ride much during rush hour, especially in the morning. Tom Wolfe says he wears a white suit because he’s not trying to fit in. He used to try to dress like his interview subjects but he couldn’t look authentic. So he decided to look out of place. If you use that line of reasoning, then a person interviewing for a job shouldn’t look like an employee because he’s an outsider. Perhaps it is right and proper that he should dress differently from them as a sign of respect and a nod to the artificiality of the interview process. At the same time, he wants to communicate the message that he’d fit in. He wants the interviewers to imagine him working with them. When they offer him the job they should grab his jacket and fling it across the room and tell him to loosen his tie, roll up his sleeves and tear up his practice questions.
If he is smart, he will keep the list of questions.
This is true. It has its own obsessions and compulsions. The tooth (number 13, third from the left, on top, next to the molars), had broken off after phase one of his root canal. Part of the remaining tooth had formed a point, which my tongue kept touching and feeling until I had a sore on it. The mild endodontist shaved off the point and will finish with the root canal next week. Then I'll get a crown from the dentist. I don't know why he didn't do the rooting out of the canal and the filling of it in one fell swoop. I should ask. I also don't know why he works downtown only on Tuesdays.
He told me his brother is an oncologist in Washington State who had cancer in his tonsils and directed his own treatment.
The cancer cell has its compulsions and obsessions. We are told: "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. The cancer cell does not get the social cues. It cannot read the faces of the other cells. It does not know when to stop reproducing iteself, when to stop telling that story one more time about its cross-country trip in a beat-up station wagon. Because of this we need to ingest poison to stop the cancer cell, and in so doing, the toxin stops other harmless and helpful cells in their tracks. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).
Cancer cells are uninhibited. They put our lampshades on their heads and run through public fountains. But these same frolicking, out-of-control cancer cells are trying to kill us. In defense, we try to induce suicide. Can you blame us?
Today was chemo Round 5, the first dose of Taxol, which is derived from the Pacific yew. We have some kind of yew bushes out front, which we prune. I don't know what kind they are. Taxol is preserved with a chemical called cremo-something, which a few people are allergic to. The nurses told me that a reaction is rare, but they laid out epinephrine and benadryl on the table nearby just in case. They'd already given me some benadryl in the drip. Reactions include feeling very hot or having constricted breathing. It happens in the first few minutes.
After a few minutes on the drip I felt blood rush to my head and ears and they were hot hot hot, and there was a heavy foot on my chest and it was hard to breathe. I reported this calmly because they’d said they were prepared. They took me off the Taxol and gave me more benadryl and put oxygen cannula in my nostrils. I felt better. Then a few minutes later I had what felt like menstrual cramps, and a nurse gave me a heat pack. The cramps went away in about ten minutes.
Was this anaphylactic shock? I asked. No, said the nurse, it was anaphylaxis. Which, from what I read, is serious and life-threatening. But not shock.
So it may not end with a whimper, or a bang, but with a closing up.
*****
Waiting for the L (train, not husband) today to go to Fancy Hospital I saw a guy in a very dark suit, white shirt, red tie with diagonal red and white stripes. Something odd about his outfit--so very severe, formal and self-conscious. He had opened a black leather folder to reveal a list, handwritten on yellow legal paper. Tell about... Tell about your… I presumed they were interview questions he was going over. His outfit was too perfect and plain. He did not seem proud of his suit. It was not ill-fitting but didn't seem tailor-made, either. Who wears white shirts any more, and who wears a black suit when it’s 80 degrees? I don’t see many people in suits on the L, but that’s because I don’t ride much during rush hour, especially in the morning. Tom Wolfe says he wears a white suit because he’s not trying to fit in. He used to try to dress like his interview subjects but he couldn’t look authentic. So he decided to look out of place. If you use that line of reasoning, then a person interviewing for a job shouldn’t look like an employee because he’s an outsider. Perhaps it is right and proper that he should dress differently from them as a sign of respect and a nod to the artificiality of the interview process. At the same time, he wants to communicate the message that he’d fit in. He wants the interviewers to imagine him working with them. When they offer him the job they should grab his jacket and fling it across the room and tell him to loosen his tie, roll up his sleeves and tear up his practice questions.
If he is smart, he will keep the list of questions.
More "Things To Do Before You Die"
A few months ago, I blogged about the current publishing trend of listing things one should see, do, eat or visit before kicking the bucket. Since then, I've had a lot of time to mull over the things I want to do and foods I want to eat before the final chapter of my life.
All of this contemplation has made me realize that I've been tall on talk and short on action. Just yesterday a friend suggested that a group get together at Papadakis Tavern, the plate-smashing, Greek-dancing restaurant in San Pedro. George and I have been talking about crashing China (the dinnerware, not the country) with our friends for more than 20 years. Isn't it time we just did it and found out for ourselves that we weren't missing out on a thing?
And ever since seeing Terrie Silverman (artist-in-residence at Beyond Baroque) and two of her students read their work at an IWOSC Reads Its Own event two years ago, I've talked about taking Terrie's class. I've blathered about working on a monologue and fantasized about one day doing a one-woman show. But I've never moved beyond the stage of attending one-woman shows as "research."
All of that is about to change. A few weeks ago, I received a forwarded email from Terrie. The producer of "The Big C," a June 16 cancer survivor month event at the Hollywood Presbyterian Medical Center, was looking for performance pieces. After a few emails with the producer and a meeting with Terrie, I decided to turn "Pole Dancing" into a ten-minute monologue.
Since I didn't know from day to day if I'd be at Hotel Hope, I ultimately had to let The Big C go the way of The Big D. Terrie invited me to participate in her Gorgeous Stories event in Pasadena on June 22, but I'll definitely (or as definitely as my life goes these days) be in the Big House on that day and will, once again, have to pass.
At first, I was a little down about these "lost opportunities," but I soon realized that we live in a town (and a world) with new chances around every corner. An email from IWOSC announced that they're hosting another IWOSC Reads Its Own event on July 15 at Dutton's Bookstore. Terrie will host another Gorgeous Stories event in a few weeks. Who knows if I'll be in or out of the hospital on either of those dates, but the piece is ready (or at least a respectable "work in progress"), the red feather boas are waiting, and I'm practicing "pole dancing" in public, much to the horror of my free-spirited teen.
I know I've asked this question before, but here we go again: What's on YOUR list of things to do, see or eat before you die?
All of this contemplation has made me realize that I've been tall on talk and short on action. Just yesterday a friend suggested that a group get together at Papadakis Tavern, the plate-smashing, Greek-dancing restaurant in San Pedro. George and I have been talking about crashing China (the dinnerware, not the country) with our friends for more than 20 years. Isn't it time we just did it and found out for ourselves that we weren't missing out on a thing?
And ever since seeing Terrie Silverman (artist-in-residence at Beyond Baroque) and two of her students read their work at an IWOSC Reads Its Own event two years ago, I've talked about taking Terrie's class. I've blathered about working on a monologue and fantasized about one day doing a one-woman show. But I've never moved beyond the stage of attending one-woman shows as "research."
All of that is about to change. A few weeks ago, I received a forwarded email from Terrie. The producer of "The Big C," a June 16 cancer survivor month event at the Hollywood Presbyterian Medical Center, was looking for performance pieces. After a few emails with the producer and a meeting with Terrie, I decided to turn "Pole Dancing" into a ten-minute monologue.
Since I didn't know from day to day if I'd be at Hotel Hope, I ultimately had to let The Big C go the way of The Big D. Terrie invited me to participate in her Gorgeous Stories event in Pasadena on June 22, but I'll definitely (or as definitely as my life goes these days) be in the Big House on that day and will, once again, have to pass.
At first, I was a little down about these "lost opportunities," but I soon realized that we live in a town (and a world) with new chances around every corner. An email from IWOSC announced that they're hosting another IWOSC Reads Its Own event on July 15 at Dutton's Bookstore. Terrie will host another Gorgeous Stories event in a few weeks. Who knows if I'll be in or out of the hospital on either of those dates, but the piece is ready (or at least a respectable "work in progress"), the red feather boas are waiting, and I'm practicing "pole dancing" in public, much to the horror of my free-spirited teen.
I know I've asked this question before, but here we go again: What's on YOUR list of things to do, see or eat before you die?
Monday, June 18, 2007
Up, Up and (Almost) Away
All of your prayers, positive thoughts, powerful imagery and crossed fingers, toes and eyes appear to have done the trick. My platelet count rose from 50,000 to 90,000 over the last week.
I'm still just under the 100,000 absolute minimum required for admission, but I'm almost there. I'll go back again on Thursday for yet another blood draw and consultation, but it should be a slam dunk. (Oops, I should be careful about the "dunk" imagery.)
This morning I was pleased to meet Emily, the nurse coordinator for my stem cell transplant. She'll be a key member of "Team Susan" during this process. We're all still hoping that it will be an auto (my own harvested stem cells) rather than an allo (donor) transplant, but Emily said that there's no way to know if I'll have enough stem cells until we're actually in harvest mode.
My calendar dependence is gradually going "up, up and away," but I'm still working on letting go of having to know and control the outcomes of everything else in advance.
.
Saturday, June 16, 2007
Sacre Vert
The other night I was walking home from the L, toward Wrigley Field, just as the Chicago Cubs game was letting out. Therewere crowds on the street and sidewalk walking toward me. As I got near our place, I started to get vigilant. We've had problems with people walking onthe parkway (the garden area between the sidewalk and street). There are several transgressions to watch for: They walk on the flagstones that frame the parkway, dislodging them. They walk on the dirt, and thus trample the plants. They let their dogs trample the plants. They let their dogs relieve themselves on the plants. We think that our bushes turned brown and died from urine poisoning.
That night a guy had his golden retriever on a leash and was letting the dog walk in the yard. My husband L and I and my visiting friend D planted white and red-striped petunias there. In the dark you can't see which is the mulch (which several of us spread on Condo Day) and which are the plants. So I said, very casually and calmly (you haveto believe me on this): Your dog's walking on our flowers. No he's not, he said. We planted them, Is aid. We don't want them to get trampled. They kept on walking, though stepping out of the yard and onto the sidewalk. Now they were past me. The young woman with them turned around and said, You should put up a sign if you don't want people to walk there. I couldn'tbelieve this. Doesn't a frame of flagstones around flowers and plants signify Garden--Don't Smoosh? I felt anger and frustration boiling in me and so I yelled as loudly as I could, so loudly that it hurt my throat for about 10 minutes afterward (I haven't learned to yell from my diaphragm), I yelled the thing I yell when I can't stand someone and want to baffle: Que'est-ce que j'ai fait pour meriter ca? I say it fast and self-righteously.
I want the person to know I detest him and I also want to confuse him. I wouldn't mind if he felt stupid, either. I'd like him to feel stupid. It means: What did I do to deserve this? Iwant to sow confusion among my enemies, and they were my enemies, for a moment. That's why I prefer, when a stranger makes me angry, to give him the peace sign or, if I have two hands available, to form a circle or triangle with my two thumbs and pointer fingers. I want to be superior. If I were a better person, I would mean it when I make the V peace sign. But I don't.
That night I thought about yelling about my cancer but it didn't seem relevant. I guess I could have tried: Mais j'ai le cancer! Je suis malade! But that doesn't have the same punch. I don't think. Or: Don't walk on my flowers, I have cancer! But then it would seem that not wanting people to step on your plants was some sort of quirk, a side effect of chemo. Once when we saw a guy letting his dog roam in theyard, L said something to him, and the guy retorted: You ought to move to the suburbs. As if we were such property-proud bourgeois that we shouldn't live in the city. I thought later of telling the guy that L has lived in Gary, Indiana, for 30 years and no one has walked on flowers there. That's as gritty a city as they come, no huge lawns or picket (or electric) fences, no No Trespassing signs, and people don't feel the need to trample other people's flowers. Here in our dense North Side neighborhood people steal flowers in pots and dig out newly planted impatiens. They tore down and stole the American flag that we had up in front after 9/11. I had been against putting up the flag, but I recognized random vandalism when I saw it. They key our cars parked on the street. They smash car windows in order to get a few pennies inside. They stole L's bike ou tof his trunk. They pee in the alley. They yell into the night and throw their beer cans wherever they happen to land. Then they throw up on the sidewalk.
In the great scheme of things, these are minor complaints, crimes against property. (And to be fair, in the suburbs and in the subdivisions, people aren't tempted to walk in flower beds because there's plenty of room to roam.) I hear a neo-con curmudgeon in my head lamenting the decline of civil society. People have been uncivil since the dawn of civilization. As they say, just NIMBY. Or front.
That night a guy had his golden retriever on a leash and was letting the dog walk in the yard. My husband L and I and my visiting friend D planted white and red-striped petunias there. In the dark you can't see which is the mulch (which several of us spread on Condo Day) and which are the plants. So I said, very casually and calmly (you haveto believe me on this): Your dog's walking on our flowers. No he's not, he said. We planted them, Is aid. We don't want them to get trampled. They kept on walking, though stepping out of the yard and onto the sidewalk. Now they were past me. The young woman with them turned around and said, You should put up a sign if you don't want people to walk there. I couldn'tbelieve this. Doesn't a frame of flagstones around flowers and plants signify Garden--Don't Smoosh? I felt anger and frustration boiling in me and so I yelled as loudly as I could, so loudly that it hurt my throat for about 10 minutes afterward (I haven't learned to yell from my diaphragm), I yelled the thing I yell when I can't stand someone and want to baffle: Que'est-ce que j'ai fait pour meriter ca? I say it fast and self-righteously.
I want the person to know I detest him and I also want to confuse him. I wouldn't mind if he felt stupid, either. I'd like him to feel stupid. It means: What did I do to deserve this? Iwant to sow confusion among my enemies, and they were my enemies, for a moment. That's why I prefer, when a stranger makes me angry, to give him the peace sign or, if I have two hands available, to form a circle or triangle with my two thumbs and pointer fingers. I want to be superior. If I were a better person, I would mean it when I make the V peace sign. But I don't.
That night I thought about yelling about my cancer but it didn't seem relevant. I guess I could have tried: Mais j'ai le cancer! Je suis malade! But that doesn't have the same punch. I don't think. Or: Don't walk on my flowers, I have cancer! But then it would seem that not wanting people to step on your plants was some sort of quirk, a side effect of chemo. Once when we saw a guy letting his dog roam in theyard, L said something to him, and the guy retorted: You ought to move to the suburbs. As if we were such property-proud bourgeois that we shouldn't live in the city. I thought later of telling the guy that L has lived in Gary, Indiana, for 30 years and no one has walked on flowers there. That's as gritty a city as they come, no huge lawns or picket (or electric) fences, no No Trespassing signs, and people don't feel the need to trample other people's flowers. Here in our dense North Side neighborhood people steal flowers in pots and dig out newly planted impatiens. They tore down and stole the American flag that we had up in front after 9/11. I had been against putting up the flag, but I recognized random vandalism when I saw it. They key our cars parked on the street. They smash car windows in order to get a few pennies inside. They stole L's bike ou tof his trunk. They pee in the alley. They yell into the night and throw their beer cans wherever they happen to land. Then they throw up on the sidewalk.
In the great scheme of things, these are minor complaints, crimes against property. (And to be fair, in the suburbs and in the subdivisions, people aren't tempted to walk in flower beds because there's plenty of room to roam.) I hear a neo-con curmudgeon in my head lamenting the decline of civil society. People have been uncivil since the dawn of civilization. As they say, just NIMBY. Or front.
Thursday, June 14, 2007
Boing, Boing, Boing
After I got the "bad news" on Monday, I spent 24 hours wallowing, worrying and obsessing. But I hit my nadir and came bouncing back, ready to enjoy a few more days of feeling the best physically since BC (before chemo). It's been nearly five weeks since the high-dose toxins have coursed through my veins.
All of this begs the question: If I'M so physically and emotionally resilient, what's with my platelets? I'm still dreaming of platelets multiplying, bouncing and soaring, but I'm prepared for any results that may come my way on Monday.
Wednesday, June 13, 2007
Guilt
The beginning of this guilt. First a feeling of difference, of feeling what I have isn't serious, not the real thing, starting from reading blogs by people with mets--meaning the breast cancer has metastasized. Reading reviews of books by these people--feeling I haven't really had cancer until it's moved from the breast to crack into my spine. That it's only, in the words of one blogger," garden variety" cancer. Which explains why the oncologist and his nurses seem nonchalant. What I have isn't deadly. (Not yet.)
Then hearing about a friend with breast cancer--a double mastectomy, mutual friends told me Sunday, with chemo and radiation,. What stage is she? I asked. Stage 1, they said. Which didn't make sense. Someone with stage 1 wouldn't have chemo and radiation, I don't think. She was having a hard time, they said. I emailed her. She emailed back. She seemed reticent. Single mastectomy. I named my meds. She said she was on pretty much the same. That it had been very difficult. I felt guilty that side effects weren't wiping me out. Though I get days in a row when I'm tired and depressed. But now I feel fine. When I feel fine I stop feeling sorry for myself. I feel guilty.
L reminded me that I'm not taking Cytoxan, which is one element of the usual ACT chemo brew--Adriamycin, Cytoxan, Taxol--because I have a platelet disorder. Cytoxan could cause a blood clot, which is more dangerous than the cancer. So I'm getting less poison than I would normally. It could be the Cytoxan that's causing my friend's side effects. But everyone is different. I'm lucky that the anesthesia didn't make me sick. My cancer-sister in Marin was throwing up for days from the anesthesia as well as the sedative they gave her when they installed her port. Do I feel guilty in regard to her? No. I also read on breastcancer.org that there's a slightly better chance of killing the cancer cells when you have chemo every two weeks instead of three. I've gotten Adriamycin every three weeks because I need the extra time for my blood to climb back to normal. Other people get a shot to beef up their blood, so they can be chemo-ed every fortnight, but I can't have the shot--because of my high platelet count.
Is guilt truly what I'm feeling? Not uneasiness? Guilt that I should be suffering more. Guilt that I'm faking it. That I don't really have cancer. That I'm not really getting chemo. How can I be saying/thinking this? You don't really have breast cancer. You are faking it. Is this a manifestation of denial? No, it's a transmogrification of the essential feeling: that I do not deserve to live. That I should perish soon. I was not made to live a long time. I was made to live tragically. Different from other people. I was made to be mourned. And to mourn while I was alive. Because I did not deserve to be alive. So living was treacherous. I had to live secretly, secretively. Under the radar.
Let me try to find logic in this. That I feel guilty because I feel good even though I'm supposed to be dying? That seems like it. The Cancer Bitch who would not die even though it was in the cards. She shuffled the deck. Used sleight of hand to change her fate. And then cried out: I am alive, please forgive me.
Then hearing about a friend with breast cancer--a double mastectomy, mutual friends told me Sunday, with chemo and radiation,. What stage is she? I asked. Stage 1, they said. Which didn't make sense. Someone with stage 1 wouldn't have chemo and radiation, I don't think. She was having a hard time, they said. I emailed her. She emailed back. She seemed reticent. Single mastectomy. I named my meds. She said she was on pretty much the same. That it had been very difficult. I felt guilty that side effects weren't wiping me out. Though I get days in a row when I'm tired and depressed. But now I feel fine. When I feel fine I stop feeling sorry for myself. I feel guilty.
L reminded me that I'm not taking Cytoxan, which is one element of the usual ACT chemo brew--Adriamycin, Cytoxan, Taxol--because I have a platelet disorder. Cytoxan could cause a blood clot, which is more dangerous than the cancer. So I'm getting less poison than I would normally. It could be the Cytoxan that's causing my friend's side effects. But everyone is different. I'm lucky that the anesthesia didn't make me sick. My cancer-sister in Marin was throwing up for days from the anesthesia as well as the sedative they gave her when they installed her port. Do I feel guilty in regard to her? No. I also read on breastcancer.org that there's a slightly better chance of killing the cancer cells when you have chemo every two weeks instead of three. I've gotten Adriamycin every three weeks because I need the extra time for my blood to climb back to normal. Other people get a shot to beef up their blood, so they can be chemo-ed every fortnight, but I can't have the shot--because of my high platelet count.
Is guilt truly what I'm feeling? Not uneasiness? Guilt that I should be suffering more. Guilt that I'm faking it. That I don't really have cancer. That I'm not really getting chemo. How can I be saying/thinking this? You don't really have breast cancer. You are faking it. Is this a manifestation of denial? No, it's a transmogrification of the essential feeling: that I do not deserve to live. That I should perish soon. I was not made to live a long time. I was made to live tragically. Different from other people. I was made to be mourned. And to mourn while I was alive. Because I did not deserve to be alive. So living was treacherous. I had to live secretly, secretively. Under the radar.
Let me try to find logic in this. That I feel guilty because I feel good even though I'm supposed to be dying? That seems like it. The Cancer Bitch who would not die even though it was in the cards. She shuffled the deck. Used sleight of hand to change her fate. And then cried out: I am alive, please forgive me.
Winning the Lottery
I was so moved after reading the comments on Paula's "Platelets Behaving Badly" post. You are just like me in that you have a need to take ACTION. I was awake into the wee hours because I was developing a plan to mobilize the Southern Cal. Hapa (half Asian, half Caucasian) community. Then I realized that I'm jumping ahead of myself. (I still hope that my platelets will be fruitful and multiply.)
The chances that any of my friends would be a match for me are pretty slim, but the odds that any of you could be a match to another "friend in need" are less staggering. Every day, thousands of patients are searching for a donor.
Several of the donors on the Asians for Miracle Marrow Match website described finding out that they were a life-saving match felt like "winning the lottery." Let me ask you this: If you could choose between cashing in on a million dollars in the California Lottery or saving a life, which would you choose? (Luckily, it's not an "either or" proposition - you can buy lottery tickets AND register as a possible donor.)
As Paula mentioned, the process is as simple as swiping a swab in the inner cheek. And you don't even have to leave home to do it. You can sign up online with the National Bone Marrow Program Registry and they'll send you the tissue-typing kit for a $52 donation.
If you'd prefer to do it in person, there are many opportunities in Southern California, including these. If you're not in Southern California, search the NBMP website for a drive near you. The Asians for Miracle Marrow Match also hosts ongoing opportunities throughout the Southland. (And, no, they won't turn you away if you're not Asian.)
If you are a match, the process of donating stem cells is surprisingly simple - a little like donating platelets. One IV takes out the blood, the stem cells are extracted and then the blood (sans stem cells) is pumped back in through another IV. To find out more, check out the FAQ on the National Bone Marrow Program webwsite.
The chances that any of my friends would be a match for me are pretty slim, but the odds that any of you could be a match to another "friend in need" are less staggering. Every day, thousands of patients are searching for a donor.
Several of the donors on the Asians for Miracle Marrow Match website described finding out that they were a life-saving match felt like "winning the lottery." Let me ask you this: If you could choose between cashing in on a million dollars in the California Lottery or saving a life, which would you choose? (Luckily, it's not an "either or" proposition - you can buy lottery tickets AND register as a possible donor.)
As Paula mentioned, the process is as simple as swiping a swab in the inner cheek. And you don't even have to leave home to do it. You can sign up online with the National Bone Marrow Program Registry and they'll send you the tissue-typing kit for a $52 donation.
If you'd prefer to do it in person, there are many opportunities in Southern California, including these. If you're not in Southern California, search the NBMP website for a drive near you. The Asians for Miracle Marrow Match also hosts ongoing opportunities throughout the Southland. (And, no, they won't turn you away if you're not Asian.)
If you are a match, the process of donating stem cells is surprisingly simple - a little like donating platelets. One IV takes out the blood, the stem cells are extracted and then the blood (sans stem cells) is pumped back in through another IV. To find out more, check out the FAQ on the National Bone Marrow Program webwsite.
Tuesday, June 12, 2007
Bleed Me a River
Another day concerned with orifices. I went to the endodontist for part 1 of a root canal for tooth number 13. He was a modest guy without the Hail-fellow-well-met-ness of many dentists or others who often greet the public. He only said what needed to be said, no small talk or jokiness. I'd asked him to explain what he was doing and he did. He numbed me (three shots), clearing out bacteria from under a cracked filling, and cleaning out and widening the canal, home of the inflamed pulp. Now I'm using file number 30, he said, then I'll try size 40--or something like that. The only thing that hurt was the first two shots. I go back in two weeks for part 2, when he will fill the tooth permanently. Everything is fine except tonight I smelled cloves and realized that my tooth felt hollow and there was soft clay coming out--the source of the clove smell. I read online that oil of clove, eugenol, is used to sterilize the tooth, and is also part of a cement compound used to seal the tooth. A certain site says that eugenol is one of many toxins used in root canals, and recommends using acupuncture instead. However, having gone this far with conventional endodontia, I will ignore that. (My acupuncturist threw in some needles last week to help the tooth, but nothing changed.) I can't ignore that the temporary filling in the tooth has fallen out. I'll have to call tomorrow.
While I was filling out a form at the endodontist's, the Boyish Gyne called on my cell phone. My biopsies were negative. He hypothesized that I'm in menopause but bleeding because of the fibroids. I don't agree. I think I still have real periods but they're very very looooonnng because of the fibroids. Why would I think this? Am I loath to give up this sign of young womanhood? Maybe. Am I scared? I think I'm scared. Of what, besides death and old age and turning into a crone, a word that feminists reclaimed 20 years ago, after all? Have I enjoyed the sheer weirdness of 38 years of bleeding? Put that way, I realize I've bled more years than I haven't. I am used to it. The blood seems alive, a sign of life, though I know it's a sign of death (no embryo taking hold). I am so full of life that I have blood to spare. I have so much blood that it falls easily out of me, doesn't have to be sucked out by leeches. So much blood...but I have to admit it's too much; I have to take iron twice a day.
The gyne said that when I go in for my ultrasound (to see if the fibroids are growing), I can (or did he say should?) get a blood test for FSH, which is follicle-stimulating hormone, to see if I'm menopausal. However, it seems that the test might be unreliable. I would like for it to be reliable. I don't want to be in menopause but I don't want to be in limbo, either. I want to know. And then what? I want to be in menopause because menopause is supposed to cause the fibroids to shrink. But if I'm in menopause already, and am having faux periods caused by fibroids, then it means that menopause is not causing the fibroids to wither, as Engels said the state would, after the proletariat seized the means of production and abolished social classes.
There's an analogy here, but it only goes so far.
While I was filling out a form at the endodontist's, the Boyish Gyne called on my cell phone. My biopsies were negative. He hypothesized that I'm in menopause but bleeding because of the fibroids. I don't agree. I think I still have real periods but they're very very looooonnng because of the fibroids. Why would I think this? Am I loath to give up this sign of young womanhood? Maybe. Am I scared? I think I'm scared. Of what, besides death and old age and turning into a crone, a word that feminists reclaimed 20 years ago, after all? Have I enjoyed the sheer weirdness of 38 years of bleeding? Put that way, I realize I've bled more years than I haven't. I am used to it. The blood seems alive, a sign of life, though I know it's a sign of death (no embryo taking hold). I am so full of life that I have blood to spare. I have so much blood that it falls easily out of me, doesn't have to be sucked out by leeches. So much blood...but I have to admit it's too much; I have to take iron twice a day.
The gyne said that when I go in for my ultrasound (to see if the fibroids are growing), I can (or did he say should?) get a blood test for FSH, which is follicle-stimulating hormone, to see if I'm menopausal. However, it seems that the test might be unreliable. I would like for it to be reliable. I don't want to be in menopause but I don't want to be in limbo, either. I want to know. And then what? I want to be in menopause because menopause is supposed to cause the fibroids to shrink. But if I'm in menopause already, and am having faux periods caused by fibroids, then it means that menopause is not causing the fibroids to wither, as Engels said the state would, after the proletariat seized the means of production and abolished social classes.
There's an analogy here, but it only goes so far.
How is my life like a Stephen King novel?
When I began this blog, I hoped (and feared) that the entries would eventually become predictable, dull and monotonous. "Check in to Hotel Hope. Get high doses of chemo. Go home for two weeks. Repeat." And I looked forward to the day when my entries would put readers to sleep ("Had another good day today") so that I could switch over to my "Open Mouth, Insert Fork" blog.
I wanted my story to be the safe, formulaic work of a hack, complete with a happy ending.
But my saga is beginning to be more like a Stephen King novel. Not in the pig's-blood-dumping-on-the-prom-queen way. In the unpredictable, sitting-at-the-keyboard, I-have-no-idea-where-this-novel-is-going style that I've read that King employs when writing one of his spine-tingling tales.
If I wrote fiction, I'm afraid I'd have to know the endng in advance and would use a detailed outline to make sure I got there. Uncertainty be damned!
But now I'm adapting to a high level of uncertainty and many unanswered questions. And I have no idea how this story is going to end.
Will my platelets rise sufficiently in one week? Will I need to endure another bone marrow biopsy as Dr. Forman suggested? Will I be able to continue Hyper CVAD at a reduced dosage? Will the reduced dosage and prolonged schedule be a big enough gun to deal with my blastic variety of mantle cell lymphoma? Will my bone marrow be able to pump out a sufficient quantity of stem cells for the autologous stem cell transplant? If not, is an allogeneic (donor) stem cell transplant the right decision? If so, will a family member be a match? If not, will I find a match on the national registry? Will I develop graft versus host disease, a common complication of donor transplants? Will I reach complete remission? If so, how long will I stay there?
I wish I could flip ahead, find out the answers to these questions and learn the ending. But I'm just going to have to take it one spine-tingling page at a time.
I wanted my story to be the safe, formulaic work of a hack, complete with a happy ending.
But my saga is beginning to be more like a Stephen King novel. Not in the pig's-blood-dumping-on-the-prom-queen way. In the unpredictable, sitting-at-the-keyboard, I-have-no-idea-where-this-novel-is-going style that I've read that King employs when writing one of his spine-tingling tales.
If I wrote fiction, I'm afraid I'd have to know the endng in advance and would use a detailed outline to make sure I got there. Uncertainty be damned!
But now I'm adapting to a high level of uncertainty and many unanswered questions. And I have no idea how this story is going to end.
Will my platelets rise sufficiently in one week? Will I need to endure another bone marrow biopsy as Dr. Forman suggested? Will I be able to continue Hyper CVAD at a reduced dosage? Will the reduced dosage and prolonged schedule be a big enough gun to deal with my blastic variety of mantle cell lymphoma? Will my bone marrow be able to pump out a sufficient quantity of stem cells for the autologous stem cell transplant? If not, is an allogeneic (donor) stem cell transplant the right decision? If so, will a family member be a match? If not, will I find a match on the national registry? Will I develop graft versus host disease, a common complication of donor transplants? Will I reach complete remission? If so, how long will I stay there?
I wish I could flip ahead, find out the answers to these questions and learn the ending. But I'm just going to have to take it one spine-tingling page at a time.
Monday, June 11, 2007
Platelets behaving badly
Were you guys sending Susan platelet-boosting vibes this weekend? Yeah, me too!
Let's all kick it up a notch because you-know-who's lab results were basically unchanged from last week. Ultra-low numbers mean no chemo, which means the whole process gets stretched out.
According to Susan, Dr. Foreman actually used the word "worried." No one wants to hear that type of language from an oncologist! After hearing that, she was bummed enough to:
a) drown her sorrows with some retail therapy, and
b) call me from Costco to request that I update the blog with this crappy news.
What's really troubling is that this slooooooooow platelet production problem may prevent her from doing an autologous bone marrow transplant. That is, harvesting her own post-chemo cells, zeroing out her white blood cells, and then transplanting her own now-clean cells back into the mix. (Is that mostly right, Suze?)
So...there's a chance she may need to find a bone marrow donor who has the same 12 key markers she does. Sure, CoH will check the national bone marrow registry, but her half-Asian-ness could make finding a match more difficult.
Let's be proactive! For instance, if you have any other half-Caucasian/half-Asian friends, why not start sucking up to them now? In a few months, they may be more than happy to audition to be Susan's donor.
I don't have all the details, but the initial test for donors is just a swipe with a swab on the inside of the cheek. The actual donation process does not take long. I'm sure Susan will give us the full poop.
The good news is that Susan feels great, platelet-challenged as she is. She'll head back to CoH next Monday for another blood test.
Platelets, people. THINK PLATELETS!
Let's all kick it up a notch because you-know-who's lab results were basically unchanged from last week. Ultra-low numbers mean no chemo, which means the whole process gets stretched out.
According to Susan, Dr. Foreman actually used the word "worried." No one wants to hear that type of language from an oncologist! After hearing that, she was bummed enough to:
a) drown her sorrows with some retail therapy, and
b) call me from Costco to request that I update the blog with this crappy news.
What's really troubling is that this slooooooooow platelet production problem may prevent her from doing an autologous bone marrow transplant. That is, harvesting her own post-chemo cells, zeroing out her white blood cells, and then transplanting her own now-clean cells back into the mix. (Is that mostly right, Suze?)
So...there's a chance she may need to find a bone marrow donor who has the same 12 key markers she does. Sure, CoH will check the national bone marrow registry, but her half-Asian-ness could make finding a match more difficult.
Let's be proactive! For instance, if you have any other half-Caucasian/half-Asian friends, why not start sucking up to them now? In a few months, they may be more than happy to audition to be Susan's donor.
I don't have all the details, but the initial test for donors is just a swipe with a swab on the inside of the cheek. The actual donation process does not take long. I'm sure Susan will give us the full poop.
The good news is that Susan feels great, platelet-challenged as she is. She'll head back to CoH next Monday for another blood test.
Platelets, people. THINK PLATELETS!
Is today the day?
I sure hope so! I have a 3:30 pm appointment for a blood draw and consultation with Dr. Forman. We had our traditional sukiyaki send-off dinner at home last night. My bags are packed. The feather boas (more about this later) are rarin' to be put into service.
I'll post from my remote location at CoH as soon as I get the word.
I'll post from my remote location at CoH as soon as I get the word.
Dos and Don'ts
After rereading my article from ten years ago, I realize that my circle of friends could be the source for a "Things to Do" article.
As the article hinted, I think it's important for friends to find a way in which they feel comfortable in showing their love and support. Many of you do this through your comments on this blog. I read and reread the comments, present and past, and marvel at the sense of caring, connection and community they create.
But that doesn't mean that non-comment leavers are any less supportive. I have many close friends who feel uncomfortable with the public forum and show their support in other ways.
I receive frequent phone calls, emails and cards. I've been on the receiving end of flowers, scarves, hats, books, feather boas and other thoughtful gifts. Many friends have visited me in the hospital and brought newspapers, magazines or treats. One friend walks with me on a regular basis, even though my low hemoglobin counts mean that I frequently need to stop for breath breaks. Another friend drives a long distance to join me for yoga classes. I'm able to drive myself to CoH appointments 90% of the time, but I'm glad that I have a long list of friends I can count on when I need transportation.
Since I wrote about the potato balls at Porto's Bakery, I've received three "care packages" from friends who just happened to be in the area. (Hmmmm, maybe I need to blog about the lobster at the Palm.) Other friends have made and dropped off extra batches of food for our family. Even though I'm able to cook on most days, it's always a treat to have something ready made, particularly at lunch time. It's especially comforting to know that I have some nutritious soup in the freezer on the two guaranteed "off" days after I check out of Hotel Hope.
As some of you read this, you are, no doubt, feeling guilt. You might be thinking, "I could do more" or "I should do more" or "I wish I could do more." This prompts the one "don't" on my list: "Don't feel guilty!" I am the first to realize how busy our lives are. When I wrote the LA Times article, I was in a position to be actively involved in two friends' lives. But I carry a lot of guilt for not "being there" for other friends in need because my own life was in chaos or turmoil at the time.
The LA Times article makes reference to the "cook club" that a neighbor organized for our friend Mary Ann. We all thought that a meal a week was a very realistic way that we could support Mary Ann and her family. We kept up the cook club for nearly a year, continuing for several months after Mary Ann's death. At first, we all took great care in the preparation and presentation of food, but, over time, the hectic nature of our daily lives made it a challenge. I often felt that I was neglecting my own family. ("No, you can't have that; it's for Mary Ann's family.") Sometimes when my designated day rolled around, I realized that I'd failed to prepare a meal and made a mad dash for take-out food. The lesson I learned is that it's imperative to support someone in a way that fits in easily with your own life. That's not being selfish; that's being realistic.
I send hugs to all of you who have shown your love and support in so many caring ways, along with the admonishment to let go of guilt.
As the article hinted, I think it's important for friends to find a way in which they feel comfortable in showing their love and support. Many of you do this through your comments on this blog. I read and reread the comments, present and past, and marvel at the sense of caring, connection and community they create.
But that doesn't mean that non-comment leavers are any less supportive. I have many close friends who feel uncomfortable with the public forum and show their support in other ways.
I receive frequent phone calls, emails and cards. I've been on the receiving end of flowers, scarves, hats, books, feather boas and other thoughtful gifts. Many friends have visited me in the hospital and brought newspapers, magazines or treats. One friend walks with me on a regular basis, even though my low hemoglobin counts mean that I frequently need to stop for breath breaks. Another friend drives a long distance to join me for yoga classes. I'm able to drive myself to CoH appointments 90% of the time, but I'm glad that I have a long list of friends I can count on when I need transportation.
Since I wrote about the potato balls at Porto's Bakery, I've received three "care packages" from friends who just happened to be in the area. (Hmmmm, maybe I need to blog about the lobster at the Palm.) Other friends have made and dropped off extra batches of food for our family. Even though I'm able to cook on most days, it's always a treat to have something ready made, particularly at lunch time. It's especially comforting to know that I have some nutritious soup in the freezer on the two guaranteed "off" days after I check out of Hotel Hope.
As some of you read this, you are, no doubt, feeling guilt. You might be thinking, "I could do more" or "I should do more" or "I wish I could do more." This prompts the one "don't" on my list: "Don't feel guilty!" I am the first to realize how busy our lives are. When I wrote the LA Times article, I was in a position to be actively involved in two friends' lives. But I carry a lot of guilt for not "being there" for other friends in need because my own life was in chaos or turmoil at the time.
The LA Times article makes reference to the "cook club" that a neighbor organized for our friend Mary Ann. We all thought that a meal a week was a very realistic way that we could support Mary Ann and her family. We kept up the cook club for nearly a year, continuing for several months after Mary Ann's death. At first, we all took great care in the preparation and presentation of food, but, over time, the hectic nature of our daily lives made it a challenge. I often felt that I was neglecting my own family. ("No, you can't have that; it's for Mary Ann's family.") Sometimes when my designated day rolled around, I realized that I'd failed to prepare a meal and made a mad dash for take-out food. The lesson I learned is that it's imperative to support someone in a way that fits in easily with your own life. That's not being selfish; that's being realistic.
I send hugs to all of you who have shown your love and support in so many caring ways, along with the admonishment to let go of guilt.
Bloggers R Us
So I have this image. A family has eaten dinner together then each member rushes to his/her computer and begins blogging, each in a separate room, reporting in the blog what everyone else in the family said, and then the blogger's side of it.
Does this already happen?
How ridiculous! Everyone knows that families don't sit down at home to eat together.
Does this already happen?
How ridiculous! Everyone knows that families don't sit down at home to eat together.
Sunday, June 10, 2007
Sunday/Paper/Critters
I think the high concentration of mold in the air is making both of us tired; we didn't go on the naked bike ride last night, alas. We walked slowly to a Mexican restaurant and then trudged to a used book store and then to a trifling Alain Resnais movie. I don't recommend it, especially if you go to French movies in order to see Paris. There is no Paris in the movie, only interior shots and snow. Modern interior shots. I think he might have been trying to make an American movie. It was based on a British play.
I was the subject of a newspaper column today. I heard from two people who saw it, one of whom works for the paper. I think this means that it's true that newspapers are dying.
The columnist, a friend of a friend, called after I sent her an e-mail invitation to the Diary Night reading I'm doing Thursday. She read my posts on cronicas and was interested in public/private aspects of writing about breast cancer. I'm interested in that too. Her questions were very good and made me think a lot about the history of writing about (one's own) illness. I felt renewed after talking to her. I will read and write more about illness essays and memoirs. I might put together a non-credit class on them. I also realized, on my own, before the interview, that I don't have to grasp for subject material. There is so much I haven't written about the body, my body, my breasts. I think in a breast cancer blog you should write more about breasts.
I'm realizing, too, that I need to do a lot of rewriting to make this into a book. The working title now is: "The Farewell-to-My-Left-Breast Party: a Body in the City." I am a body in the city, not in the country or wilderness. I'm not getting strength from nature's wisdom, etc. Rather, I feel better if I can see some nice Italianate architecture. One of my favorite buildings in town for that is Hotel St. Benedict Flats. Hmm. I think of it as Italianate, but the city of Chicago landmarks site calls it Victorian Gothic. Anyway, I love coming up from the Chicago Avenue stop on the Red Line and seeing that building. I react to old buildings the way other people react to favorite paintings.
Today we rode our bikes and stopped for sandwiches at Red Hen Bread on Diversey, which is in another favorite building, the Bewster Apartments. L got a Diet Dr. Pepper at the White Hen across the street. I don't know which came first, the red or the white. Clarice Lispector wrote three cronicas about eggs and chickens. From one: "The chicken exists so that the egg may traverse the ages. That is what a mother is for. The egg lives like a fugitive because it is always ahead of its time: it is more than contemporary: it belongs to the future."
L. and I sat outside the Red Hen to eat and saw a man and a woman come out of the building next door on Pine Grove and walk to a tree near us and peer in at the undergrowth around it. The woman explained that they were looking for the results of an experiment. Someone had brought six cicadas from Evanston to that tree, which sat on a square of dirt and was covered partly with greenery. They couldn't find any cicadas. I thought they should check in another 17 years. Later in the day at the Little Hardware Store down the street from us we saw a young brown and white beagle-ish dog that the owners denied was part beagle, averring that it was part basset. Then a bald man walked in with a large yellow and blue parrot, with big black beak and painted-looking face. The bird was clutching his hand from below. The man was in a rush and when I asked if the parrot talked, he said, Yes, too much, and kept walking. I think that a person who carries a large parrot shouldn't pretend that he's not carrying a parrot. Nonchalance in this situation will always seem feigned. The man did stop in the aisle where the dog was and held the bird just above the dog. The dog barked at it. I supposed the parrot guy didn't want to bother talking to anyone who wasn't with an animal.
Yesterday I received in the mail from my friend in Kentucky an article about a minature dachshund who had been rescued by the fire department along with two humans when their house filled with carbon monoxide. The people were taken to the hospital. The dog was, too, after being given oxygen in a mask especially for dogs, donated by the local kennel club. The masks come in three snout sizes. The link will take you to the article, but without photos, which is too bad, because they were darling. To see beautiful dachshunds in need of homes, click here.
I was the subject of a newspaper column today. I heard from two people who saw it, one of whom works for the paper. I think this means that it's true that newspapers are dying.
The columnist, a friend of a friend, called after I sent her an e-mail invitation to the Diary Night reading I'm doing Thursday. She read my posts on cronicas and was interested in public/private aspects of writing about breast cancer. I'm interested in that too. Her questions were very good and made me think a lot about the history of writing about (one's own) illness. I felt renewed after talking to her. I will read and write more about illness essays and memoirs. I might put together a non-credit class on them. I also realized, on my own, before the interview, that I don't have to grasp for subject material. There is so much I haven't written about the body, my body, my breasts. I think in a breast cancer blog you should write more about breasts.
I'm realizing, too, that I need to do a lot of rewriting to make this into a book. The working title now is: "The Farewell-to-My-Left-Breast Party: a Body in the City." I am a body in the city, not in the country or wilderness. I'm not getting strength from nature's wisdom, etc. Rather, I feel better if I can see some nice Italianate architecture. One of my favorite buildings in town for that is Hotel St. Benedict Flats. Hmm. I think of it as Italianate, but the city of Chicago landmarks site calls it Victorian Gothic. Anyway, I love coming up from the Chicago Avenue stop on the Red Line and seeing that building. I react to old buildings the way other people react to favorite paintings.
Today we rode our bikes and stopped for sandwiches at Red Hen Bread on Diversey, which is in another favorite building, the Bewster Apartments. L got a Diet Dr. Pepper at the White Hen across the street. I don't know which came first, the red or the white. Clarice Lispector wrote three cronicas about eggs and chickens. From one: "The chicken exists so that the egg may traverse the ages. That is what a mother is for. The egg lives like a fugitive because it is always ahead of its time: it is more than contemporary: it belongs to the future."
L. and I sat outside the Red Hen to eat and saw a man and a woman come out of the building next door on Pine Grove and walk to a tree near us and peer in at the undergrowth around it. The woman explained that they were looking for the results of an experiment. Someone had brought six cicadas from Evanston to that tree, which sat on a square of dirt and was covered partly with greenery. They couldn't find any cicadas. I thought they should check in another 17 years. Later in the day at the Little Hardware Store down the street from us we saw a young brown and white beagle-ish dog that the owners denied was part beagle, averring that it was part basset. Then a bald man walked in with a large yellow and blue parrot, with big black beak and painted-looking face. The bird was clutching his hand from below. The man was in a rush and when I asked if the parrot talked, he said, Yes, too much, and kept walking. I think that a person who carries a large parrot shouldn't pretend that he's not carrying a parrot. Nonchalance in this situation will always seem feigned. The man did stop in the aisle where the dog was and held the bird just above the dog. The dog barked at it. I supposed the parrot guy didn't want to bother talking to anyone who wasn't with an animal.
Yesterday I received in the mail from my friend in Kentucky an article about a minature dachshund who had been rescued by the fire department along with two humans when their house filled with carbon monoxide. The people were taken to the hospital. The dog was, too, after being given oxygen in a mask especially for dogs, donated by the local kennel club. The masks come in three snout sizes. The link will take you to the article, but without photos, which is too bad, because they were darling. To see beautiful dachshunds in need of homes, click here.
Saturday with Doctors and Writers
If you don't like medical detail, just skip this post.
There was a nice little coffee/tea place/restaurant on in Greenwich Village named Anglers and Writers. I was there when it was rainy outside and so when I think of it I think of cold and rain outside and coziness inside, metal fishing implements on the walls and lots of rough-hewn wood everywhere. It may or may not have been like that. I say this in past tense because when we were in the Village in December it was gone. When I wrote the title above I thought about Doctors and Writers: Could there be an intimate restaurant with that name? What would there be on the wall? Black medical bags? Stethoscopes? Can the doctors and writers be friends? That song from Oklahoma!: Oh, the farmer and the cowman should be friends--even though they're at cross purposes. You can't say that about doctors and writers; they aren't diametrically opposed. Necessarily.
Saturday started with a 10:00 appointment with my accidental gynecologist. Meaning he's mine accidentally. I think I went to him for a third opinion, but liked his opinion then chose him to do surgery. He removed my ovary and salpinga, as mentioned earlier in this blog, because I had a cyst that wouldn't leave. The other two opiners said that my uterine fibroids should be cut out, but this guy said they might grow back and surgery might make a mess. He didn't say that exactly but that's how I imagined it: that he wouldn't be able to get all the fibroids and the remains would be bleeding, like little stumps. I liked this guy because he was willing to say that it was pretty clear that the cyst was benign and it was up to me whether to have surgery. I think the other doctors were assuming it was benign but were afraid to say it. What I don't like is that he's hard to get ahold of. His appointment-makers are also hard to get ahold of. Making an appointment requires staying on the phone, punching buttons and listening to bad music. It's a good opportunity to multi-task. He's in an office with a friend of mine from youth. We were in Sunday School carpool together. The gyne is also connected with Fancy Hospital, which means he can look up all my records on the computer. My regular doctor had felt a lump in my (former) left breast in August and told me to get an ultrasound, but since the last time she'd sent me for an ultrasound, the radiologist had found nothing and moreover had pooh-poohed internists as alarmists, I didn't do anything. I had an appointment with this gyne soon after and asked him to check it. He said it didn't feel like anything. So. I was waiting for him to find out through my Youthful friend that the lump had turned out to be Something and to tell me he felt bad, but that never happened. Probably the Friend of my Youth didn't pass the info along because of confidentiality. On the other hand, when my internist found out it was cancer, she called me and told me she was praying for me.
The Fancy gyne looks at least 10 years younger than I am, has even features and is good-looking (which I don't trust in a doctor) in a lithe, boyish way, and wears gym shoes with his doctor uniform. He seems like the kind of guy who would be very funny if you saw him away from the office, like he's holding back when he talks to you. But I might be wrong about this. I think he's very smart.
And lo it was the 27th day of my bleeding and my internist had found a cervical polyp recently so I called the Fancy gyne and got an appointment, amazingly enough, for a few days later, Saturday. And unbelievably I didn't even have to wait. I had mentioned chemo when I made the appointment, and I mentioned it that day to the nurse, so when the gyne came in he knew about it. Or maybe he'd already known about it. I had imagined making a dramatic announcement: Remember that lump you said was nothing? Well (whipping open the hospital gown and letting the silence be eloquent)--. He walked in with the motto on his lips of All Doctors Who Know You Have Cancer: Are you hanging in there? It's quite apt but gets tiresome. Maybe there will be a continuing medical education course that teaches them an alternate opening line.
My taciturn oncologist just asks how I am. Which is fine.
The rest gets grisly so feel free to skip.
It seems pretty clear that my bleeding is caused by the fibroids. Or five boys. See below. But he did an endometrial biopsy just to make sure there wasn't another cause, such as endometrial dysplasia, a pre-cancerous condition. He said removing the little bit to biopsy would take 10 seconds and feel like a strong menstrual cramp and he was right. It was strange that he was right. Strange to hear it come from a man. But as L has pointed out, even if he doesn't experience something himself, the male gyne hears over time from women what it felt like and so can pass it back on to me. Thus he is a conduit. For women's wisdom, you could say. He also removed the polyp. I asked to see it. It looked like a tiny red tutu floating in a jar. I asked what he thought about my getting tested for BRCA1 and 2, mutated genes that are a specialty of Ashkenazi Jews. We produce them in disproportionate numbers, along with violinists, comedians, doctors and Nobel Prize winners. (A bit of Jewish jingoism here.) My surgeon hadn't thought I needed testing but when I asked the oncologist last time I saw him, he said I could get tested, since I have an aunt and cousin who had breast cancer. The mutation can indicate that you're more at risk for ovarian cancer than otherwise. The gyne asked if I would have my second ovary taken out the test was positive, and I said yes. Then he said to go ahead. He also gave me a referral for another ultrasound to see if my fibroids were growing. I didn't have the guts to say, Are you sorry you missed the lump? But I did make reference to the lump he had felt, and later he said he was sorry I had cancer. He asked me if I was doing anything fun this weekend. I said I was moderating a panel at the Printers Row Book Fair. I guess that didn't sound fun enough because he asked again and I said we might go on a nude bike ride. If L wanted to. I'd seen it in the paper that morning: World Naked Bike Ride Chicago. Body painting at 6, riding naked or in costume at 9, I liked the idea of going topless. It seemed like a good way to make my former breast public. It's not like I'm exactly proud that I'm missing a breast. But I don't want to be ashamed of it.
My next appointment was with the dentist. I have two sensitive teeth, one of which had started aching. He told me that part of the filling is gone, and that, unsurprisingly, that I might need a root canal. He said to check with the oncologist about taking antibiotics and then to come in Monday and he'd take out the old filling and either refill the cavity or send me down to the endodontist. The story with the other tooth is that the pulp is very close to the filling. He told me that the pulp can grow and move around. Also, fillings can settle. But the thing is, I think that teeth are like hair and nails, but they're not. They're living, feeling parts of us. He gave me a brochure about chemo and teeth. Chemo can dry out your mouth and make it more prone to bacterial growth. He took a look and pronounced my saliva production satisfactory.
Later in the day I thought, Why on earth did I tell my gyne I was going bike-riding nude, even though it was a real possibility? He'll think I'm weird. L said, Everyone who knows you thinks you're weird.
Then came the writer part. At the book fair I went to the authors' (and moderators') check-in room and saw this shortish woman with thick straight gray hair, who looked sort of like a younger Nicole Hollander. It turned out she was Amy Hempel, who is a wonderful, voice-driven short-story writer. She was very easy to talk to. She is the stuff of legend, of the 1980s boom of short-story collections. Many fiction writers with unpublished collections are waiting for the short story to come back in popularity. It's about time now. Every time someone came up to her and learned who she was, they said, I teach your stories. I do too. We agreed that writing novels seems impossible, hard to hold all that information in your head. At her panel she read a short story. It was one sentence long.
At the fair I bought two books from Sarabande Books, a literary press in Louisville. I'd met the Saraband publicist at a dinner in her honor at B & S's house Friday night. Both books are essay collections, both by poets. Today I read the first, A Family of Strangers, by Deborah Tall, finalist for the National Jewish Book Award. It's odd and deceptively simple. Or maybe not deceptively. There's lots of white space. Each segment is about a page long and is made of very short paragraphs. It's about her quest for missing family. Her father was an orphan. The white space makes the book very quiet, gives it a hush. Some of the sentences are poetic and dense and some are not. In a way I think she's "cheating": by surrounding the lines with white space, she's making the reader pay attention to them, and she's declaring them to be poetic. As I said, most of them are. But some are not. I couldn't help wondering if I could "get away" with the same thing: Cut up my essays into snippets and float them in space. My friend P had told me about the book, and that Tall was Jewish. (Tall? What was it before? Talesnick. Maker of tallises.) I'd heard of Tall, who was the editor of the Seneca Review, home of the lyric essay. P also told me that Tall had recently died of breast cancer. She had inflammatory breast cancer, which is rare and aggressive. It's what Molly Ivins died of. In the last piece of the book Tall talks about her diagnosis: "In my grief, I dream most that my children may inherit a legacy of absence and yearning.
"Yet they will have this trail of crumbs I've scattered, this effort to make of us a story."
That was very sad to read. She died at 55.
There was a nice little coffee/tea place/restaurant on in Greenwich Village named Anglers and Writers. I was there when it was rainy outside and so when I think of it I think of cold and rain outside and coziness inside, metal fishing implements on the walls and lots of rough-hewn wood everywhere. It may or may not have been like that. I say this in past tense because when we were in the Village in December it was gone. When I wrote the title above I thought about Doctors and Writers: Could there be an intimate restaurant with that name? What would there be on the wall? Black medical bags? Stethoscopes? Can the doctors and writers be friends? That song from Oklahoma!: Oh, the farmer and the cowman should be friends--even though they're at cross purposes. You can't say that about doctors and writers; they aren't diametrically opposed. Necessarily.
Saturday started with a 10:00 appointment with my accidental gynecologist. Meaning he's mine accidentally. I think I went to him for a third opinion, but liked his opinion then chose him to do surgery. He removed my ovary and salpinga, as mentioned earlier in this blog, because I had a cyst that wouldn't leave. The other two opiners said that my uterine fibroids should be cut out, but this guy said they might grow back and surgery might make a mess. He didn't say that exactly but that's how I imagined it: that he wouldn't be able to get all the fibroids and the remains would be bleeding, like little stumps. I liked this guy because he was willing to say that it was pretty clear that the cyst was benign and it was up to me whether to have surgery. I think the other doctors were assuming it was benign but were afraid to say it. What I don't like is that he's hard to get ahold of. His appointment-makers are also hard to get ahold of. Making an appointment requires staying on the phone, punching buttons and listening to bad music. It's a good opportunity to multi-task. He's in an office with a friend of mine from youth. We were in Sunday School carpool together. The gyne is also connected with Fancy Hospital, which means he can look up all my records on the computer. My regular doctor had felt a lump in my (former) left breast in August and told me to get an ultrasound, but since the last time she'd sent me for an ultrasound, the radiologist had found nothing and moreover had pooh-poohed internists as alarmists, I didn't do anything. I had an appointment with this gyne soon after and asked him to check it. He said it didn't feel like anything. So. I was waiting for him to find out through my Youthful friend that the lump had turned out to be Something and to tell me he felt bad, but that never happened. Probably the Friend of my Youth didn't pass the info along because of confidentiality. On the other hand, when my internist found out it was cancer, she called me and told me she was praying for me.
The Fancy gyne looks at least 10 years younger than I am, has even features and is good-looking (which I don't trust in a doctor) in a lithe, boyish way, and wears gym shoes with his doctor uniform. He seems like the kind of guy who would be very funny if you saw him away from the office, like he's holding back when he talks to you. But I might be wrong about this. I think he's very smart.
And lo it was the 27th day of my bleeding and my internist had found a cervical polyp recently so I called the Fancy gyne and got an appointment, amazingly enough, for a few days later, Saturday. And unbelievably I didn't even have to wait. I had mentioned chemo when I made the appointment, and I mentioned it that day to the nurse, so when the gyne came in he knew about it. Or maybe he'd already known about it. I had imagined making a dramatic announcement: Remember that lump you said was nothing? Well (whipping open the hospital gown and letting the silence be eloquent)--. He walked in with the motto on his lips of All Doctors Who Know You Have Cancer: Are you hanging in there? It's quite apt but gets tiresome. Maybe there will be a continuing medical education course that teaches them an alternate opening line.
My taciturn oncologist just asks how I am. Which is fine.
The rest gets grisly so feel free to skip.
It seems pretty clear that my bleeding is caused by the fibroids. Or five boys. See below. But he did an endometrial biopsy just to make sure there wasn't another cause, such as endometrial dysplasia, a pre-cancerous condition. He said removing the little bit to biopsy would take 10 seconds and feel like a strong menstrual cramp and he was right. It was strange that he was right. Strange to hear it come from a man. But as L has pointed out, even if he doesn't experience something himself, the male gyne hears over time from women what it felt like and so can pass it back on to me. Thus he is a conduit. For women's wisdom, you could say. He also removed the polyp. I asked to see it. It looked like a tiny red tutu floating in a jar. I asked what he thought about my getting tested for BRCA1 and 2, mutated genes that are a specialty of Ashkenazi Jews. We produce them in disproportionate numbers, along with violinists, comedians, doctors and Nobel Prize winners. (A bit of Jewish jingoism here.) My surgeon hadn't thought I needed testing but when I asked the oncologist last time I saw him, he said I could get tested, since I have an aunt and cousin who had breast cancer. The mutation can indicate that you're more at risk for ovarian cancer than otherwise. The gyne asked if I would have my second ovary taken out the test was positive, and I said yes. Then he said to go ahead. He also gave me a referral for another ultrasound to see if my fibroids were growing. I didn't have the guts to say, Are you sorry you missed the lump? But I did make reference to the lump he had felt, and later he said he was sorry I had cancer. He asked me if I was doing anything fun this weekend. I said I was moderating a panel at the Printers Row Book Fair. I guess that didn't sound fun enough because he asked again and I said we might go on a nude bike ride. If L wanted to. I'd seen it in the paper that morning: World Naked Bike Ride Chicago. Body painting at 6, riding naked or in costume at 9, I liked the idea of going topless. It seemed like a good way to make my former breast public. It's not like I'm exactly proud that I'm missing a breast. But I don't want to be ashamed of it.
My next appointment was with the dentist. I have two sensitive teeth, one of which had started aching. He told me that part of the filling is gone, and that, unsurprisingly, that I might need a root canal. He said to check with the oncologist about taking antibiotics and then to come in Monday and he'd take out the old filling and either refill the cavity or send me down to the endodontist. The story with the other tooth is that the pulp is very close to the filling. He told me that the pulp can grow and move around. Also, fillings can settle. But the thing is, I think that teeth are like hair and nails, but they're not. They're living, feeling parts of us. He gave me a brochure about chemo and teeth. Chemo can dry out your mouth and make it more prone to bacterial growth. He took a look and pronounced my saliva production satisfactory.
Later in the day I thought, Why on earth did I tell my gyne I was going bike-riding nude, even though it was a real possibility? He'll think I'm weird. L said, Everyone who knows you thinks you're weird.
Then came the writer part. At the book fair I went to the authors' (and moderators') check-in room and saw this shortish woman with thick straight gray hair, who looked sort of like a younger Nicole Hollander. It turned out she was Amy Hempel, who is a wonderful, voice-driven short-story writer. She was very easy to talk to. She is the stuff of legend, of the 1980s boom of short-story collections. Many fiction writers with unpublished collections are waiting for the short story to come back in popularity. It's about time now. Every time someone came up to her and learned who she was, they said, I teach your stories. I do too. We agreed that writing novels seems impossible, hard to hold all that information in your head. At her panel she read a short story. It was one sentence long.
At the fair I bought two books from Sarabande Books, a literary press in Louisville. I'd met the Saraband publicist at a dinner in her honor at B & S's house Friday night. Both books are essay collections, both by poets. Today I read the first, A Family of Strangers, by Deborah Tall, finalist for the National Jewish Book Award. It's odd and deceptively simple. Or maybe not deceptively. There's lots of white space. Each segment is about a page long and is made of very short paragraphs. It's about her quest for missing family. Her father was an orphan. The white space makes the book very quiet, gives it a hush. Some of the sentences are poetic and dense and some are not. In a way I think she's "cheating": by surrounding the lines with white space, she's making the reader pay attention to them, and she's declaring them to be poetic. As I said, most of them are. But some are not. I couldn't help wondering if I could "get away" with the same thing: Cut up my essays into snippets and float them in space. My friend P had told me about the book, and that Tall was Jewish. (Tall? What was it before? Talesnick. Maker of tallises.) I'd heard of Tall, who was the editor of the Seneca Review, home of the lyric essay. P also told me that Tall had recently died of breast cancer. She had inflammatory breast cancer, which is rare and aggressive. It's what Molly Ivins died of. In the last piece of the book Tall talks about her diagnosis: "In my grief, I dream most that my children may inherit a legacy of absence and yearning.
"Yet they will have this trail of crumbs I've scattered, this effort to make of us a story."
That was very sad to read. She died at 55.
Saturday, June 9, 2007
When a Friend Has a Serious Illness
After two young friends were diagnosed with terminal cancer more than a decade ago, I wrote the article below for the LA Times. This was one of the most diffiicult articles that I've ever written because I needed to conduct very focused phone interviews with several seriously ill patients. I kept it together during the interviews, but lost it after I hung up the phone.
I haven't read this article for several years, but I'm happy to say that it holds up from the other side of the fence.
Showing True Friendship in Sickness and in Health; Relationships: If their illness is serious--terminal or not--they'll need your support. Let them know you care and explain how you can help.:[Home Edition]
SUSAN CARRIER. Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.:Feb 21, 1996. p. 5
I haven't read this article for several years, but I'm happy to say that it holds up from the other side of the fence.
Showing True Friendship in Sickness and in Health; Relationships: If their illness is serious--terminal or not--they'll need your support. Let them know you care and explain how you can help.:[Home Edition]
SUSAN CARRIER. Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.:Feb 21, 1996. p. 5
| Author(s): | SUSAN CARRIER |
| Document types: | Infobox |
| Section: | Life & Style; PART-E; View Desk |
| Publication title: | Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.: Feb 21, 1996. pg. 5 |
| Source type: | Newspaper |
| ISSN: | 04583035 |
| ProQuest document ID: | 16669634 |
| Text Word Count | 1536 |
| Document URL: | http://proquest.umi.com/pqdweb?did=16669634&Fmt=3&clientId=13497&RQT=309&VName=PQD |
| Abstract (Document Summary) |
| When my friend and neighbor Mary Ann, an energetic 41-year-old with two young children, announced that she had cancer in the lower half of her body, I collapsed in a heap on the nearest couch and sobbed. After I pulled myself together, I sensed that I had failed Lesson One of "When a Friend Has a Serious Illness." I soon learned that my reactions were not unique. Fear of intruding, fear of invading the family's privacy, feelings of helplessness, fear of saying or doing the wrong thing around an ill person or their family are all common responses. Sometimes the fears and feelings of helplessness are so overwhelming that friends and acquaintances take the safe route and do or say nothing at all. Driving to doctor appointments, watering plants, folding laundry, coordinating meals, providing child care, responding to correspondence or phone calls are all examples of practical help, but, as John Sallot, coordinator of the "buddy office" for AIDS Project Los Angeles, puts it, "Every person who is ill is an individual. It's important to communicate with them." Some people would welcome a friend coming in to scrub toilets; others would consider it an intrusion. |
| Full Text (1536 words) |
| (Copyright, The Times Mirror Company; Los Angeles Times 1996 all Rights reserved) When my friend and neighbor Mary Ann, an energetic 41-year-old with two young children, announced that she had cancer in the lower half of her body, I collapsed in a heap on the nearest couch and sobbed. After I pulled myself together, I sensed that I had failed Lesson One of "When a Friend Has a Serious Illness." I was unprepared to deal with the emotions her news would unleash. I felt consumed by my feelings of helplessness and fear of saying the wrong thing. I wanted to support Mary Ann and her family, but didn't know how. I soon learned that my reactions were not unique. Fear of intruding, fear of invading the family's privacy, feelings of helplessness, fear of saying or doing the wrong thing around an ill person or their family are all common responses. Sometimes the fears and feelings of helplessness are so overwhelming that friends and acquaintances take the safe route and do or say nothing at all. Gail Millan, a registered nurse and an education coordinator for Cedars-Sinai Medical Center, says it is important to put fears aside, to let the ill person know you care and to explain ways you can help. She identifies three primary forms of assistance: practical help, information related to the illness and general emotional support ("I'm here if you need to talk or if you need a hug"). When approaching a friend or his or her family, the general line, "If you need anything at all, let me know," is comforting and reassuring, but won't elicit a response if the person is reluctant to ask for help. "Be as concrete as possible. Identify something specific you can do," advises Valerie Ruelas, a social worker supervisor in the HIV/AIDS unit at County-USC Medical Center. Mary Ann's husband, Mark, agrees. "I really appreciate it when someone tells me to call if we need anything, but I have no idea if they're serious or how much time they have or what they're willing to do. If someone is specific, it opens up a dialogue." Julie Lichtenberg Stern got down to specifics by organizing a cooking club, a group of five friends who take turns cooking a meal for Mark and Mary Ann's family five nights a week. "I don't know what we'd do without it," says Mark. "There's no way I could do it {the cooking} right now. I'm working two jobs." Driving to doctor appointments, watering plants, folding laundry, coordinating meals, providing child care, responding to correspondence or phone calls are all examples of practical help, but, as John Sallot, coordinator of the "buddy office" for AIDS Project Los Angeles, puts it, "Every person who is ill is an individual. It's important to communicate with them." Some people would welcome a friend coming in to scrub toilets; others would consider it an intrusion. Sometimes emotional support is trickier to supply than practical support, although the two often overlap. In his book "Sometimes My Heart Goes Numb (Love and Caring in the Time of AIDS)" (Jossey-Bass, 1995), Charles Garfield writes that helping with household tasks "carries the elements of devotion: allegiance, dependability, trustworthiness, affection." For many caregivers and friends, going about these tasks lets them communicate that they care without the universal "fear of saying the wrong thing" syndrome. Ronnie Kaye, a therapist in private practice in Marina del Rey and author of "Spinning Straw Into Gold: Your Emotional Recovery From Breast Cancer" (Lamp Post Press, 1991), describes the syndrome as a panic experience. "When helpers feel they must take away pain, they feel an urgency that borders on panic." Sallot adds that once volunteers in APLA's buddy program understand that they don't have to solve every problem, answer every challenge or make the pain go away, the panic diminishes.Anger and depression, vulnerability and a keen sense of one's mortality (whether the illness is terminal or not) are typical emotions associated with a life-threatening illness. Kaye says, "Sickness often puts patients in touch with emotions that are terrifying to others. Some people will just run away." Not running away and becoming comfortable with those emotions is the challenge of caretakers and friends. Mary Spencer, who flew from Seattle to be with our friend Mary Ann a week before her death, said that looking at her friend's exhausted condition was the hardest thing she's ever done. "Sometimes I just massaged her neck in silence without bothering to chitchat. Other times we had heavy discussions about courage and letting go." "It's a delicate dance," says Sallot. To be silent or to speak. To rush over and immediately comfort someone when they are dying or to let them cry. To show your own emotions or to bottle them up. Often the friend must rely on intuition. For those willing to take the risk, the personal involvement can have an enormous impact. Darlene Blanchard, a 35-year old woman with a 1-month-old son, recently learned that she has had the AIDS virus for more than 10 years. Her childhood friend Valerie Lancaster has provided the emotional and practical support she needs to face the illness. "I'm one of the lucky ones," Blanchard says. "I couldn't get through this without my friends." (BEGIN TEXT OF INFOBOX / INFOGRAPHIC) When a Friend Becomes Very Ill THINGS TO DO * DO be as specific as possible about how you would like to provide practical or emotional support. If you are unfamiliar with the person's needs, ask. Then make appropriate suggestions. * DO listen. Randy Herrera, a volunteer with the buddy office at AIDS Project Los Angeles, recommends active listening, which he describes as the art of listening beyond the actual words and understanding their meaning. * DO respond nonjudgmentally. * DO provide respect and validation. Let the friend know it's OK to be angry or depressed. * DO try to find a way to bring joy into the patient's life. At a "Mad Hatter Tea Party" that Michelle Hyland and Sally Viera hosted, guests were asked to wear a hat and bring a hat or scarf for their friend Mary Ann, who had lost her hair during chemotherapy. "She truly loved it. It gave her a chance to feel like a whole person again," says her husband. Simple gestures such as offering the use of a hot tub, renting a video or offering a massage can be welcome comforts. * DO reach out even if you are not the person's closest friend. * DO apologize if you've said something insensitive or something innocent that was taken the wrong way. * DO guide each other along the way. Often knowing what to say and how to react is just as difficult for the patient as it is for the friend. Every person responds differently to the stresses of an illness. Some patients and their families like to be asked continuously for status reports; others consider it tiresome and an intrusion. THINGS NOT TO DO * DON'T take things personally. If the friend doesn't feel like talking or seeing you or if the friend seems angry or depressed, it's not necessarily about you. * DON'T allow the friend to become emotionally abusive. Call him or her on it by saying something like, "I want to be here for you, but I can't do it when you're angry and abusive with me." * DON'T treat the friend like an invalid. * DON'T expect the friend or his or her family to make you feel better if you are sad or depressed. * DON'T pry for details. If they are offered, listen openly. * DON'T come in with a preconceived notion about what the person should be feeling. Therapist Ronnie Kaye says that if you make up your mind in advance that people should be crying or sharing innermost feelings, you could end up irritating them. * DON'T put the friend on a time line for emotional recovery. Every person is unique. * DON'T invalidate a person's feelings. "Anything that invalidates a person's feelings is a crime," Kaye says. Examples include such comments as: "You shouldn't feel that way," "If you're not careful you're going to make yourself really sick," "Don't talk about dying," and, "Everybody has to die some time." * DON'T trivialize a person's feelings. Comments such as, "It's only temporary; your hair will grow back," to a chemo patient, or, "I get headaches, too," to a friend with a brain tumor belittle painful issues. AND ABOVE ALL . . . Never share a story about someone else who has died of the same disease. While this may seem like common sense, almost every patient with a serious illness has a similar story. "I think it's their way of bonding with me," says Jerry Cozell, 64, who is recovering from colon cancer. Renate Sperling, 58, who has lung cancer, says she has become "very selective" about who she tells about her disease. When someone tells her about another friend who died, it immediately brings her down, even though she knows that every case is individual. PHOTO: Darlene Blanchard, left, who has HIV, has support from friend Valerie Lancaster, getting a hug from their neighbor Stephanie Salls.; PHOTOGRAPHER: ROBERT DURELL / Los Angeles Times Credit: SPECIAL TO THE TIMES |
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