The Sakurako Chronicles 桜子

The Garage Sale Story

2011-11-19T11:13:00.003-05:00

I get requests for this from time to time.

A few summers back, I had a surplus of junk and a shortage of cash. A garage sale seemed like a good idea, so I rounded everything up and took an ad out in the paper. I also distributed flyers all over: laundromats, grocery stores, places I thought would attract a lot of customers. And it worked. At five a.m. the morning of, I was actually fending off early birds trying to sneak under the half-opened garage door. It was crazy and stayed that way for most of the day.

There were ups and downs. My stuff was selling like crazy, which was great. All of the big heavy furniture went right away. One lady walked off with five or six shopping bagfuls of random junk, enthusing to everyone who would listen that I had "good stuff". Then there were the baddies, like the lady who intimated ominously to me and my mom that if she happened to trip and fall on our property, she could sue us. She'd done it before, she said. It was enough to make me line the garage in yellow safety tape, which I did between her visits; she showed up every couple of hours.

We had a pretty good mid-afternoon crowd going when an old Buick stopped at the curb. A stout woman in her early sixties got out, then turned to assist a tiny little old lady in a white polyester pantsuit. The lady, who looked ancient, stooped and wobbled along behind her friend. We had a lot of people to keep track of and I didn't pay them much mind at first. About ten minutes later, the little old lady tottered her way up to me and asked if I had a place she could sit down.

I jumped up and gave her my seat. She placidly stared off into space, a multipurpose smile on her lips, as her friend went through a pile of old clothes. I figured it was a hot day, she was in head-to-toe polyester and she just needed a little rest. I went about my business, but a couple of minutes later she caught my attention to ask if she could use our restroom.

I'd never been in that situation before, a complete stranger asking to come in and use the bathroom, and I didn't know what to do. It was a sweet little old lady, it was a hot day. The house had two bathrooms: my parents' bathroom and the guest one, which I was using as my own. If she was using any bathroom, it was going to be mine. I wasn't wild about a stranger using my bathroom, but I felt like I couldn't turn down a little old lady. I said of course and took her elbow to help her into the house. She was so frail-looking that I stayed in the hallway in case she needed me.

I had waited about three or four minutes, worrying about my mom handling all the customers by herself, when I heard the little old lady's voice from the cracked bathroom door. "Yoo-hoo! Yoo-hoo! Miss, I've had a little accident. I don't suppose you have any baggie I could put my underpants in, do you?"

I'm thinking, aw, the poor lady's wet her pants. I said of course, ran back out to the sale, and grabbed an opaque plastic bag so that no one would see her soiled underwear. I brought it back and handed it to her through the cracked door. She thanked me, then a few minutes later the door was cracked open again. "Yoo-hoo! Yoo-hoo!"

This time she wanted to know if I had any pants to give her. That was kind of a strange request, but I assumed the urine had soaked through to her white slacks and she was embarrassed. I told her I'd find something, and I returned with a long, dark skirt from the sale. It even matched her blouse. I handed it through the door; she thanked me and things were quiet again for a few minutes more.

Then she was at the door again. "Yoo-hoo!" This time she wanted to know if I could go find her friend. I said sure and retrieved the lady from a rack of knickknacks. She followed me inside and disappeared behind the bathroom door. Then I heard something I didn't expect.

"Oh my God!"

Out scuttled the younger woman, pulling the little old lady behind her. They slammed the bathroom door behind them and scooted past me down the hallway, out the door into the garage and down the driveway to the Buick. They practically squealed the tires getting out of there. I followed along behind, thoroughly confused. For starters, the woman hadn't paid for the skirt I gave her. But when I went back and opened the bathroom door, I found that was the least of my problems.

Weak stomachs be forewarned, this is about to get very gross.

It took a moment to mentally process what had just happened in that bathroom. The closest I can come to describing it is this:

Imagine a jumbo-sized water balloon filled to capacity with completely liquid diarrhea. Now imagine that someone took that balloon, held it over their head, then spiked it at the floor as hard as they possibly could. That's about as close as I can come theory-wise as to what might have caused the devastation I was now seeing.

Liquid crap was everywhere. It was splattered on the mirror, it was running down the walls in little rivulets, it was congealing in the folds of the shower curtain. The toilet was caked in it. She had pulled out cabinet drawers and it had formed big tan splotches on the linens inside. In a couple of places, it was dripping from the ceiling. There were big hand prints in it where she'd hand-over-handed it down the counter. It was smeared on the faucet and spout. I wish I were exaggerating. I'm not.

My first impulse was to throw up. Then I realized I would have to kneel in a puddle of it to get to the toilet, and I clamped down hard on the heaving. Then I wanted to cry. If you know what a germophobe I am, you can imagine just how badly this got to me. I've cleaned up poop before, and it's not a big deal, but this was...complete stranger poop. And it was everywhere.

I went out to tell my mom and I spent the rest of the afternoon...and evening...and night...scrubbing that bathroom. It turned out to be even worse than I thought. It was up in the workings of my scale; it was splattered on the velveteen of my hot-rollers. I ended up having to spend most of the profits from the garage sale just replacing everything that had gotten ruined. The walls had to be repainted; even after I'd scrubbed with bleach, Lysol and then Soft Scrub, the brown stains remained. And we never heard from the lady or her friend again.

The only thing that we can think of that might explain what happened is this: we think the lady had a very full colostomy bag that she was trying to empty into the toilet, and it slipped and hit the floor. Not very far from the water balloon theory, really. How else could it have happened? It's not like she had a Super Soaker filled with it that she smuggled in there.

One of these days I might let down my guard and have another sale. Rest assured, though, that there are going to be NO PUBLIC RESTROOM signs all over the place. And I'll even turn down old ladies.
Coat my bathroom in liquid diarrhea once, shame on you. Coat it twice, shame on me.

I'll wrap up this story with something my Biomedical Ethics professor shared one day. He was on the ethics staff at Rush-Presbyterian, and he had just told a horrific but enthralling story involving a hooker who had a chronic infection of her colostomy opening. After some questioning as to why she was getting these persistent infections, she confessed to her physician that she charged extra for that particular privilege.

The class, mainly first- and second-years, was aghast. The professor perched on the corner of his desk, a twinkle in his eyes. "Now," he said, "who thinks that's the most disgusting story they've ever heard?"

Every hand in the room shot up.

He looked at us a moment. "And who here will never repeat it?"

Not a single hand was raised.

The Parking Space Altercation.

2011-11-15T16:45:00.007-05:00

"Tonight, we'll be investigating the growing use of handicapped parking spaces...by people who are not handicapped." (ominous music)

I cringe when I hear this sort of thing, mostly because I've learned over the years to expect more than one instance of idiotic, self-righteous vigilantism backlash after these nighttime news "investigations". This comes from two sources...the healthy uninformed, who equate all disability with apparatus (wheelchair, crutches, prostheses) and/or some sort of dramatic deformity, and the disabled self-centric, people who remain ignorant of all issues not their own and who are sure that in one way or another they're worse off than you.

I have a handicapped placard, even though my disabilities prevent me from driving. I have it with the full blessing of my specialists, all of whom are quite aware of the periodic upsets the spinal cord tumor and spinal scar tissue cause with my mobility. In addition to that, walking on slippery pavement is dangerous when you have a broken, radiated and dead cervical spine that can't be repaired. I'm not supposed to walk far, in the touchingly optimistic belief that less distance equals less risk. I've lived a good chunk of my life paralyzed, through some medical miracle I'm not-quite-paralyzed at the moment, and given the choice I'd rather remain as I am. So I come by the placard honestly, and then some. I'm supposed to carry it with me, no matter who drives.

So let's all agree that I may make spinal cord cancer and a broken neck look good, but at the end of the day it's still spinal cord cancer and a broken neck. People remark on how "healthy" I look, but they don't have MRI vision and can't see what's going on in there. I might limp if I'm having a bad day with the spinal stuff, or if all the postsurgical arthritis is getting the better of me, but otherwise people see me getting out of a car with no wheelchair or missing limbs and all they can think of is, "Fraud! Handicapped parking fraud!"

Today, I finished shopping in a store before my mother, who was driving us. She asked me to take the baby to the car, which was parked in one of several available spots (the pavement was wet, but I never take the last spot- I will only use my placard if other parking is available). I walked out with the baby, got her into the car with great difficulty, went through the usual routine of positioning her where she can climb into the seat herself and I could buckle her in.

I was still working on that, half in and half out of the car, when I noticed a large silver Jeep behind me. A woman was hovering, obviously waiting for the space, thinking that I was buckling my baby in before hopping into the driver's seat and vacating the apparently coveted spot. I guess she couldn't have known that I can't drive. She was getting impatient with how slow the buckling process was going, and she started yelling at me from her car and gesturing angrily. There were other spots, but this one was hers, damn it.

I decided to ignore her, since I literally could not do anything that was going to make her happy, got the baby buckled in, and did my arthritis-hobble back around the car to the passenger seat. When I got in there instead of driving off and relinquishing the space, it was too much for her. She tore into the space beside ours, screeched loudly to a halt, and got out of the car.

This is a rather scary scenario for someone with a delicate spinal situation. I locked the door and stared back at her as she shouted and gestured some more, and then she did what I guess I expected her to do the whole time...come around the front of the car and lean on the hood, angrily scanning for the handicap placard she thought wouldn't be there.

But it was, and she stormed off, and when my mom got out of the store we got out of there.

I never figured out exactly what the woman's problem was, other than her apparent obsession with the parking space and her certainty that I wasn't there legitimately. I'm not sure which camp she was in, the ignorant able-bodied or the self-righteous disabled. She was scary.

It's sort of sad that this comes up now and then, but it does.

My opinion is this...if someone has a placard or plates, it's between them and the DMV how that came about. If the placard or plates are there legitimately, it's no one else's concern. And there are so many mobility-limiting but not physically dramatic disabilities out there, I don't know how anyone could be so confidently self-righteous about it with absolutely zero information. Snap judgments gone bad, I guess. And sanctioned by the local news, to boot.

As for the people who park in handicapped spaces with no right to be there, or people who sneak in with Grandma's placard, I'm not too keen on them. As a friend once said, "There are the disabled...and the not disabled yet." It could happen to anyone, so why not behave yourself while you're ahead?

Life goes on, as a disabled mom.

2011-09-01T06:34:00.005-04:00

Long time since the last update, but things are more or less the usual for me. Had stomach surgery with IV anesthesia, cried as I was rolled into the ER because I thought they'd crank my neck back and I'd be wheeled back out paralyzed or dead.
Surgery has always been particularly perilous due to the other problems. I was not at all happy with the loss of control that comes with general anesthesia. If I'm out, I can't talk, and if I can't talk, I can't make sure people are being careful with my unstable spine. That's a very scary prospect.

I don't know if most people realize it, but they're very, very rough with people in surgery. You get rolled, you get flipped, you get shoved and propped and turned. Have you ever noticed weird bruising after a procedure? That's why. Since you're anesthetized, you don't have that body-stiffening "wait, this doesn't feel right" thing going. In "normal" intubations, your head gets cranked back (yes, that's the term I've heard used in physician circles) to clear the airway for whatever works they've selected to be inserted. It's all a very rough process, and I don't do so well with rough.

Anyway, I had a great physician who did the procedure herself and who made sure that everyone in the room was aware of my situation. So I was still crying, but I was glad she was there. And when I woke up, I was fine. Missing a chunk of stomach for a biopsy (gastritis nonspecific), but fine. My mom was watching my daughter and she had thoroughly exhausted her good behavior by the time I got to Recovery. She kept interrupting the surgeon to tell her stories about her plastic zoo animals.

Three days before the stomach surgery, I broke my ankle stumbling off my in-laws' front steps. I'm not sure how much of that was clumsiness due to the inflexible spine and how much was just general clumsiness and an unforgiving terrain. In any case, I stepped off the front steps backwards (facing someone on the porch who was talking to me), hit an uneven piece of concrete with my left foot, instinctively put the right foot down to support myself, it happened to land in a hollow, the foot turned under me, and down I went.

I heard a snap but thought it was my imagination. I'd sprained my ankle so badly in junior high my leg was black to the knee, so it was weak anyway. I figured I'd just turned it. My brother-in-law had just taken us on a tour of his fire station; he was there to wrap it and tape a bag of frozen spinach to it. My mother-in-law gave me her cane. The kids were standing over me with umbrellas. I had yard-mud all over my back and butt and had to limp into Walmart later for new clothes. My daughter was crying, "Mommy fall down, is she ok? Mommy fall down hurt her ankle!" It was all very embarrassing.

Not long after that, I noticed that my ankle wasn't behaving like it did the many times it'd been sprained before. It had a floppy, unstable feel to it and it was only puffy in one spot. When I poked the puffy spot, the pain was astounding. So because it was weird, I decided to get it checked out. My doctor told me that she was sure it was just a sprain and that the office had never ordered an ankle x-ray that had ended up being a fracture. A couple of days later, they called back: "Congratulations, you're the first patient in our practice to ever have an actual ankle fracture."

It was an avulsion fracture, which happened when my foot turned under me so violently. Instead of stretching or tearing as a ligament would in a sprain, it just yanked itself loose and took a chunk of bone with it. So I've been in a hateful, smelly, knee-high brace thing that I hope to be rid of soon. I don't wear it as much as I should. I'm reminded of my folly every time I step on a toy and my ankle twists anew. It's still very floppy and the house is full of brightly colored plastic landmines.

So that's been my summer...setbacks here and there, but still trying to soldier on and pack the most I can into life. My daughter is beautiful...three feet tall, a little over one-and-a-half years old, talking and imagining well enough to tell me that the abrasion on her knee was a zebra bite. She remains the best thing that ever happened to me, one mark in the positive column of a story that's frankly a bit of a downer.

;)

Gatekeepers, part III

2011-02-13T21:29:00.003-05:00

Fast-forward to my daughter's one-year well-baby exam, and they're at it again.

After the two-month exam with the whole "go to the health department" debacle, the doctor's office didn't utter a peep about any potential problem with the insurance. She got all her shots on schedule with no issue.

Which explains my surprise when a nurse entered the room brandishing a paper instead of a loaded syringe, telling us that we were going to have to go to the county health department because our insurance wouldn't pay.

My first thought was, "Oh, not this again." After that it was steadily rising anger as I argued with the nurse, the same nurse who had given my daughter's injections all this time with no apparent problem. She left and returned several times, finally backing down enough to tell me that fine, they'd give the shots, but they'd be losing a large chunk of money in the process.

My little girl got the shots, put in the requisite screams and received her special kid-friendly band-aids. We went home. I started making phone calls. Then there was one hell of a big ice-storm that pretty much shut down this part of the country for a few days. When we dug out from under it, I began making calls again, and this is what I established:

My daughter has a very good primary insurance plan through a private insurer. The plan covers 7 well-baby visits within the first year, all with the corresponding approved vaccines. My daughter had used 5 visits and they had covered everything 100%. The one I'd just been to was the 6th visit, meaning that even if I'd gone to an EXTRA visit and somehow fit in some extra vaccinations, that would have been covered too.

I had to wait through several days of a closed business office before I was put through to an office manager of some sort, and by that point I was so angry I left one of those disgruntled-customer messages on her voicemail. That gave her a chance to get huffy in return, so I should have expected her to be difficult when she finally called.

HER: You need to understand, it is our office policy that when we see (daughter's supplemental insurance, which she doesn't use except for copays), we do not administer vaccinations because that insurance doesn't pay for them. Now, I looked up our policy and was sure of that before I called you.

ME: I'm telling you that's a non-issue because that's my daughter's secondary insurance and the billing should never even get to them, because her primary insurance pays 100% of her well-baby visit and vaccinations.

HER: (louder) It is our office policy to send patients to the county health department because we do not get paid and vaccinations are expensive. Now, I have taken my grandchildren to the county health department and it is just fine.

ME: I am not going to the county health department! My daughter has a very good primary insurance plan through a private insurer and they told me that they have paid 100% of office charges, INCLUDING vaccinations, INCLUDING (list of all the recent vaccinations). They cover it all. The secondary insurance should not be getting billed! You don't have to bill them! The primary insurance is paying for everything!

HER: Are you asking me to pretend that you don't have (secondary insurance) when you do? Because I won't be a party to that. And if our medical staff is going along with you in this, I need to educate them.

ME: What?

HER: Are you asking me to defraud (secondary insurance) by removing them from the billing?

ME: What the hell are you even talking about?!?

...it went on, in this vein, for about ten minutes, with me angrily brandishing contact information to this person and that person at the primary insurance's provider-info line and trying to pound it through her thick skull that, unless she was double-billing or something, this was a stupid knee-jerk reaction to seeing the name of a completely irrelevant insurance policy.

HER: Oh. Wait. I should have looked at your chart.

ME: Probably.

HER: Well, I see here that (primary insurer) has paid 100% of all our billing.

ME: That's what I've been trying to tell you.

HER: Well, I just looked up our office policy to make sure I had that right, I didn't look at your chart to verify the insurance coverage. I'll put a note in here for them not to bother you, we haven't had a problem with your insurance at all.

ME: (probably having some sort of mini-stroke on my end from the top-out in blood pressure) If you'd just checked it to begin with, we wouldn't have had to go through all this.

HER: Well, I can see there's no problem so I'm going to write a note to the medical staff not to bother you. We'll pretend we never had this conversation, ok?

...and you can see how well I can pretend we never had that conversation.

Seriously, what the hell is wrong with people? Somewhere in her authoritative drone she also assured me that I didn't understand insurance terms and that 100% coverage didn't mean 100% coverage, that I would get an increase in insurance premium. I gritted my teeth and told her to let ME worry about that, it wasn't her problem.

A little bit of knowledge is a dangerous thing. I wonder how long we'll go before the next run-in.

Gatekeepers, Part II

2010-03-27T23:31:00.005-04:00

So on Friday, I took my daughter to her two-month well-baby exam. And all went wonderfully with that. She's big, she's strong, she's healthy, she hates getting shots. All normal.

I'd gotten a bill for $40, for two past copays we'd owed from before we knew the exactitudes of her insurance plan. That was $20 a visit, so I was prepared to pay $60...the two old copays and one current one. Except when I sat down to pay, they wouldn't take my money. They kept insisting that the supplemental insurance could be re-billed and that I shouldn't have to pay a copay. I kept trying to pay. They kept telling me no.

Fine. I took the $60 and spent it on baby supplies.

A few hours later, I got a call from the doctor's office. This had happened the last time she was in for a well-baby exam and vaccinations, so I was half-expecting it: a call to make sure she was doing okay after the shots, that she hadn't had a reaction. Except it wasn't that at all.

“Do you know if your insurance is going to cover this visit and these shots? Because frankly your supplement isn't even going to pay us enough to reimburse for the meds, and if your insurance isn't going to pay you need to be getting your vaccinations at the county health department.”

....uh, what?

I was so taken aback by this, I didn't build up any steam for a full-on hissy fit. The baby is covered under a good, commercial insurance plan...Aetna... and I was just about positive that a two-month checkup and vaccinations would have been covered. There hadn't been any problem before. I didn't have the booklet there in front of me, but I was sure...wasn't I? Why was she calling me and not the insurance? Was there some reason this wouldn't be covered? Why was she being so snitty about this? Why the threat to send me to the health department instead of...oh, I don't know...billing me? What was this all about after they refused to take my money that morning, when I sat down with cash and tried to give it to them? I mean, what the hell?

I fretted about it for a while, then spoke to a very nice woman at Aetna. I gave her a brief rundown and she asked if I was serious. She asked if this kind of behavior was normal for where we lived. She offered to call the office for me and I told her yes, please, thank you so much. She left a message for the business office woman to call her back on Monday and told her that yes, of course well-baby visits and vaccinations were covered and she could have called her to ask her this herself, instead of bothering the patient, if she had concerns. I was very happy I talked to the woman at Aetna.

But why did they call me? Why the insults? Why would they completely skip over the possibility of billing me? Why does someone who works in a billing office not know whether one of the major commercial insurances covers something that just about every insurance plan covers? The world may never know. It's a shame the doctor's so nice, because I'm pretty disgusted with his staff.

And nope, we never did get a call checking on the baby after her vaccination like we did the first time. Maybe they were in battle mode over assuming they wouldn't get paid and they didn't care. Weird.

Gatekeepers, part I

2010-03-27T20:41:00.002-04:00

“When office people are good,” a triage nurse told me last week, “they're wonderful. And when they're bad, they're horrible.”

She was getting me checked in for yet another ER visit, because my usual arthritic/spasm flare-up had the scary new element of an ugly throb in the middle of the back of my head that made me sick with possibility. Sometimes it felt as if a blood-pressure cuff were being inflated around my neck, making my head and cheeks turgid with blood. Mainly, I envisioned an aneurysm on some weakened vascular structure, although I wasn't ruling out the possibility of some metastisis lurking on my brain stem. I became frightened. I cried. I went to the hospital. Did I mention that all of this happened on my birthday?

My c-spine had been acting up since the first week of March. Had it not been for the unpleasant addition, I would have written it up as standard procedure...I usually have one or two very bad episodes a year, often in conjunction with a seasonal or lifestyle change. The weather had been all screwy and my muscles had been learning to lift a baby; both were likely culprits. I once had an episode after adopting a new kitten who wanted to snuggle between my shoulder and my head, as close to my face as possible, and tried to push my head out of the way as he stretched. It happens.

I made my usual appointment with the neurologist who handles my day-to-day problems. He was more booked than usual, and the appointment wound up being at the end of the month. When the weird, new throbbing started, I worried. I know radiation weakens vessels. What had it done to me? Was the throbbing an ominous sign? Was I going to die suddenly and leave a newborn infant behind? I began moving cautiously and imagining a loose fire hose gushing blood, waving around wildly inside my brain.

I called his office and told the medical assistant what had been going on, that I had these new symptoms on top of my standard experience, and explained that I lived two hours from the doctors office. Should I have my usual MRI early, I asked, so that he would have it ready when I arrived for the appointment? That way, if there were some emergency, he could be alerted by the radiologist at my local hospital. The assistant wouldn't relay the message to the neurologist. She told me I could wait till my appointment.

So wait I did, for over two weeks, and soon my eyes felt like they were bugging out of my head with the pressure. And when I stood up, the throb returned in the center of my brain and my world whirled and I imagined my daughter telling friends, when she got close enough to them, that she never knew the mother who had died when she was less than two months old.

So I went to the ER and stepped outside my MRI-only rules to have a CT done. (That statement would be a lot more impressive if you knew how terrified I am of radiation). Long story shorter, there was no obvious cause of the throb and the pressure, other than “more neck weirdness”, and a few days later it faded with the rest of the inflammation and spasms. I have no idea what happened. Maybe something pinched or pulled something else. I haven't seen the neurologist since before I was pregnant. Sometimes that feels like swimming just out of sight of the lifeguard, into tracherous waters.

I guess I'll find out at my appointment, or after I finally have an MRI. Could the worry and the expensive ER visit have been avoided by the office gatekeeper relaying my concerns to my physician? Maybe. Should she be abstaining from making medical decisions on his behalf? Probably.

Figuring it all out...

2010-02-25T11:41:00.005-05:00

In January I gave birth to my third daughter...one I got to keep this time...and the entire experience was uncharacteristically smooth. She's a beautiful and healthy girl, very alert and well-oriented for her age, very vocal. We're thrilled, if somewhat at a loss as to what to do in an utterly normal situation. We're getting there, though.

I had an incredible surgical team, complete with my Guardian Angel nurse and a trio of anesthesiologists and anesthetists who had several plans and backup plans. It was the only spinal anesthesia I'd ever gotten that didn't cause problems later. Other than making the surgery a little more complicated than it might otherwise be, my traitorous body pretty much behaved itself.

There were some issues with movement-- when you have a stiff neck, your natural reaction is to compensate with your abdominal muscles, which my c-section rendered temporarily useless. I laid there like an upended turtle before working that out. There are issues with breastfeeding, when you can't look down far enough to see that everything is going as it should. These were things I hadn't really thought of, but were easy enough to work around.

There were some other things that were more difficult. I wanted to breastfeed and we didn't know exactly how that would go down with the radiation damage I have. I was visited by a hail of lactation consultants...about seven in all, some more understanding than others. I had the infant shoved in there until she bit out of frustration and had threads of my blood in her spit-up; I was hooked to a wheeled apparatus that made me feel very much like a barnyard animal; I was alternately coddled and scolded about my whole insufficient-milk situation and for the most part made to feel that I wasn't trying hard enough.

Finally we met with one who seemed to get it, and after trying a couple of things we arrived at a conclusion I'd reached a month before...to do what I could, and supplement with formula. I've found that as a rule lactation consultants don't like to discuss formula. They want to get in there and wrangle for your very soul, which is frustrating to me because I wanted to breastfeed to begin with. Everyone was a lot easier on me after it became apparent that the baby was gaining weight very appropriately and that I wasn't starving her with this lack-of-birthright thing, over which I had no control at all.

When I was pregnant with the twins, I did a lot of research on moms with disabilities and how they compensated for their physical shortcomings. There's a physical aspect to child-rearing that can't be avoided, and I knew my problems would be bigger than not being able to go on a rollercoaster or ice-skate with my daughter. There's an organization or two out there, but in general the information isn't too easily accessible. Guess some of that's going to fall to me, to share as I figure things out.

Know those big plastic baby-carriers that are pretty much standard issue these days? Yes, well, when you have broken spinal issues and a muscle spasm problem, you can't carry them. Not only are they too heavy even without a baby inside, they're also too far away from your body's core and swing heavily like a pendulum at the end of your arm. So I can't just go tooling around with one of those on my own; someone has to carry it for me. Dependency rears its ugly head once again.

Slings and carriers work better, but it's difficult to find ones that will work well with your particular musculoskeletal situation. You can't just try out every one on the market to see what works best. It's also difficult to easily transfer a child from a carrier or sling to a stroller or carseat, especially in winter when everything needs to be covered. There's a lot of unwrapping and unraveling involved. When my daughter is able to hold up her head on her own for longer stretches, I think slings will be good support and take some strain off my arms. Until then, though, it feels cumbersome and vulnerable. For now, I also want more of a protective shell around my baby if I were to slip on the ice or anything.

I love the collapsible stroller I use to wheel the baby around with me. It's a bit big at the moment, but with a sleep positioner and head-cradling pillow, that took care of that. She can go anywhere I go, there's plenty of space for necessities, and this particular model is super-lightweight and easy to handle. My mom bought the next-heavier-duty version, and that will be good for outdoor use. These also fold with minimal fuss...squeeze the handle and down it goes.

So we're working on it. I'm learning how to incorporate a baby into my whole physically-compromised scenario. It's not impossible, just takes some work. I'm so thankful to have my daughter that even the big problems are a pleasure to handle.

The Facebook Breast Cancer Meme

2010-01-07T22:28:00.004-05:00

I swear I got this from 5 or 6 different people today, and saw the results back from 10 or 12 more.

"Some fun is going on.... just write the color of your bra in your status. Just the color, nothing else. And send this on to ONLY girls no men .... It will be neat to see if this will spread the wings of cancer awareness. It will be fun to see how long it takes before the men will wonder why all the girls have a color in their status... Pass it on...this was sent to me, I tried to do people that we wouldn't have in common, so less of a chance to duplicate... Do it if you want..."

...even saw it colour-corrected for those in the appropriate regions, exact same message.

And all day, I saw a barrage of listed colors, from women of all backgrounds and ages, and the requisite bewilderment from men / giggles from women over the big secret. I chose not to participate. I have a reputation for being sour about these things, I guess.

I'm assuming, since we're talking bras specifically and "cancer awareness", that this is a breast cancer thing. I'm not so sour that I can't appreciate general awareness-in-spirit, so I'm not going to go on about how this practice actually helps anyone, or speculate cynically on someone starting this just to see how big it gets. But there are two fundamental problems here, neither one new.

1) my mother, who in no small part due to her bilateral mastectomy is quite aware of breast cancer, wears no bra at all. Many other cancer patients are in the same boat. What do they post cryptically in their status updates?

2) this sort of reinforces breast cancer awareness as a women-only thing. Where does this leave the men who have it?

I hate to be the killjoy, I really do. I imagine people rolling their eyes at someone having a problem with something innocent and fun. But I saw it hit my mom weird, and I know it's hitting other people weird too.

Various stuff...

2009-12-31T15:03:00.005-05:00

The baby's doing great. I was afraid they were going to make me go to my absolute physical limit with the pregnancy and they are. I'm at term now, but they feel I can physically tolerate the pregnancy up to 39 weeks. So I get to wait a while longer, unless she takes matters into her own hands before then.

This is a depressing time of year for me. The weather in general...but especially the cold...tends to wreak havoc with my old surgeries. It's always at this time of year, between Thanksgiving and Valentine's Day, that my arthritis and muscle spasms always do their big annual team-up to make my life a living hell. I'm hoping the worst has come and gone. I've spent the better part of two calendar years pregnant, which results in greatly diminished pain control options. Tylenol never did anything for me anyway, and now I don't have my standby of Excedrin and coffee to lean on. And I won't, for a while.

It's not just the weather...the holiday season kicks off with a lot of bad memories. I have a lot of relatives who died in the bleakest days of fall and winter. The first week of November alone, I lost a brother and sister, my wonderful great-grandmother and a childhood cocker spaniel I loved dearly. An aunt I loved died the day after Christmas. My antique brass menorah comes from a great-uncle I adored, to whom I never got to say goodbye. And so on. I've spent a lot of time in cold graveyards, pushing flower arrangements into frozen dirt.

If you've read any of my assorted junk at all, you know that I have a lot of respect for Joey Ramone (aka Jeff Hyman). I joke about him being an unofficial patron saint of sorts. I promote his family's lymphoma charity. Must be a kindred-spirit thing with the cancers, the spinal issues, the OCD. I can't remember if I ever said anything here before about the awful circumstances surrounding his death, though. Everything seemed to go south on New Year's Eve, 2000.

It's covered somewhat in his brother's new book, I Slept With Joey Ramone. The rest of it is sort of pieced together from various accounts. Joey was out walking (possibly to satisfy an OCD-tasklist) and slipped on sidewalk-ice, breaking his hip. People walked past him, over him, either not wanting to get involved or thinking he was just a drunk. He was undergoing treatment for his lymphoma, and he lay there on the sidewalk in ice and slush in excruciating pain. Someone finally came to his assistance, but not before he'd seen a fairly ugly and depressing side of humanity.

The surgery necessary for the broken hip knocked his lymphoma treatment off schedule, and his cancer saw a chance to get ahead. He died the following Easter Sunday. From what some people close to him said, he remained depressed to the end about how no one stopped to help him. People are dicks. I've heard other stories about people passing out on sidewalks and waking to find their purses or wallets gone, and I don't know why it happens.

Besides the general humanity-can-be-a-waste message, it's also a reminder to us cancer patients to be careful on the ice.

Good doctors, bad buildings.

2009-12-05T02:34:00.006-05:00

I have a lot of great doctors. As a matter of fact, the group of them I have now I wouldn't trade for anything...the combination is perfect. The majority of them communicate splendidly, there are no real personality conflicts, and I've never had any serious doubt as to whether they're keeping up with advances or acting in my best interest.

And a lot of them are in shiny-new office buildings, or well-maintained older office buildings, or private offices on-campus at large hospitals.

I have a couple of specialists, though...again, really great doctors...whose offices are in creepy 70s-era inner-city rabbit warrens, complete with original furnishings and paint. You know, the really narrow brown naugahyde chairs with the squarish chrome arms, the tan wallpaper sprigged with orange and olive green, the carpet that looks as if a shampooer would leave garishly bright tracks. The only concession to the twenty-first century is a big brown Sauder tv cabinet with Sanjay Gupta blaring at me in 20-minute cycles. Otherwise, I feel as if not much has changed since my late-70s early 80s childhood, except that everything is somehow shabbier and filthier.

I'm not so silly as to think that good care can't be had in these offices, or so naive as to think that a blinding-white environment equals cleanliness and modernity. And I know that often the physician him/herself is responsible for the decorating costs of a leased office, and if you're not in a big practice the money can only stretch so far. I just hate looking down into the nauga-grain of my seat cushion and seeing decades of grime.

If it can't be updated, repainted, recarpeted...could it at least be scrubbed? I always come home and shower after a doctor visit- not really because of the exam, but because of the general oogy feel those dingy waiting rooms give me. Maybe I'm the only one who minds, because a lot of people don't seem to. A lot of people plop down , pick up the dog-eared Dec 2003 People and seem perfectly content to learn about Johnny Depp being the Sexiest Man Alive at 40. I've seen people stretch out across filthy couches under dim and buzzing fluorescent lighting and have themselves a nice little nap. No one else seems to worry about who wiped their nose and turned magazine pages before them or who coughed and touched the bathroom doorknob.

I'm loyal to my doctors, and when I find a good one I stay. If I'm on the fence, though, it can make up my mind for me. I used to go to a couple of specialists (who were related, actually) in separate dirty, dingy office buildings. One had a poster in her office, one of those order-from-a-catalog caricature jobs, with her specialty misspelled. The same dead ants that were on the floor in August were still there in October, with a coating of dust. The other specialist seemed to have constant untended cold sores (herpes happens, but so does herpes treatment) and kept his tongue depressors unwrapped in his shirt pocket. With him, the final straw came when I showed up for a semi-invasive procedure and saw the instruments laid out on kleenex. There was a scope he was planning to use and they washed it by rinsing it off in the hallway water fountain. That did it for me. I refused the procedure and found myself a new specialist.

Please, physicians. I get cost-effectiveness and staff not-my-jobism, but please, hire a cleaning crew, especially for your waiting rooms. Patients are taking all this in, and it would reflect the practice in a much more positive light.

...and sometimes, the universe is just trying to tell you something.

2009-12-01T16:27:00.004-05:00

I was very amused when I looked down and saw this...

<-- ...and if you wonder what about that is so amusing, C8 (or the more cumbersome "perflurorooctanoic acid") is the very carcinogen that began my family's whole cancer odyssey. Weird how things pop up sometimes. I don't know why there would be a random "C8" stamped on a bill. Supplemental reading can be found here, but take it with a grain of salt...there's a certain entity for whom legal/PR damage control is a priority, and wikipedia is editable.

(Edit: I would also have accepted, "What is someone on disability income doing with an entire $20 bill?" as the funny/ironic part. Answer: it wasn't mine.)

Must have this much of a sense of humor to ride.

2009-11-29T17:00:00.003-05:00

I think it's funny.

Does it have to be a circus every time?

2009-11-11T08:22:00.003-05:00

One of my doctors routinely orders labwork through a big local diagnostics center. Let's call it Enigma Phlebotomy Incorporated.

Theoretically, Enigma Phlebotomy serves our area through a number of participating hospitals and small lab centers. You're supposed to go on the Enigma website and punch in your zip code to find the "service center" nearest you. I've done this a couple of times and always gotten two results: a tiny hospital down the street from my house and a little lab in a strip mall.

I used to go to the little lab in the strip mall for bloodwork that doctors had ordered through them specificially, but when I'd show up with an Enigma order they'd say, "This isn't us." That's when I started trying at the tiny hospital, with mixed results. The hospital channels you directly to a registration desk inside the front doors, where your insurance info and script are taken before you're given a number and allowed to proceed any further. Yesterday the registration clerk (who was coughing and hacking uncontrollably, by the way*), told me what I'd been expecting...that they didn't honor Enigma scripts.

Since I hear this every other time I go, I was prepared with the printout from the Enigma site listing them as a service center. She glanced at it and made some phone calls. Long story short, they went ahead and did the hour and a half of labwork, but it was a struggle every step of the way. The registration people had to call my doctor for a different script. They told me that the phone number that Enigma listed as their hospital number went to an unanswered phone in Sterile Supply. People kept poking their heads in as I was getting my blood drawn to give updated orders and information.

I'd been fasting, had one hell of a headache, was not looking forward to drinking the nauseating diabetes-test stuff I knew I'd have to drink (it tastes like Triaminic cough syrup, and you have to chug a bottle of it in 5 mins), and just wanted to get my stupid bloodwork done.

Now I guess the onus is on me to call Enigma and see what's up regarding their service centers in this area. I'm guessing that they will just as steadfastly declare the hospital's participation as the hospital steadfastly denies it, and that we'll get nowhere. I keep telling my doctor's staff that I need the labs ordered differently, but they keep sending Enigma orders. If I can't get it sorted out, that means a 45-minute trip to an inner-city area every single time I need bloodwork. And I can't drive.

I just want to go to a lab, sign in, get my bloodwork and go home :( That doesn't seem like so much to ask.

Not an unbearable amount of frustration, but more added to the mix.

* working sick is not uncommon in hospitals, where resources are stretched thin and percieved shirking is frowned upon. I once worked a Fourth of July evening shift with a 104 degree fever, completely delirious, because our policy was that if you couldn't find your own replacement you had to work. None of my coworkers were willing to give up their holiday off, and that's how I ended up at work. I remember nothing about that shift. The official story given out by hospitals now with the H1N1 scare is that fevered workers need to stay home, but given my personal experience, I doubt that's how it actually goes. Sounds good to the public, though.

OCD and Depression

2009-11-07T18:20:00.002-05:00

As with everything else here, what I say is more of a personal experience thing than a Learnèd Authority thing. I think that the bigger the pool of honest shared experiences is, the better.

Joey Ramone, OCD sufferer and an unofficial patron saint of mine, used to complain to those close to him: "I've got a lotta stuff I can't fix." It bothered him, and I know why because it's something I deal with too.

It sounds a little pejorative to call it "obsessive", as in "it puts the obsessive in obsessive-compulsive". To me, that conjures up images of bug-eyed psychotic stares, unfathomable pettiness and wildly erratic behavior. My parents had an almost irrational fear of obsession and raised me in an atmosphere of tight neutrality; too much interest in or excitement about anything was considered obsessive and undesirable. So it's weird that I'd end up with an issue that has such a negative label to me on a gut level. I don't feel any more obsessive than I feel like a rampant arsonist or an unrepentant shoplifter or anything else our parents taught us was a bad thing to be.

The "obsessive" part of OCD isn't some sort of scary psychotic mania. Rather, it's a memory that you can't get rid of, or a gap in your memory that nags at you. It sticks to you and you can't flick it away and trust that it'll stay gone. It's some experience you have that gets red-flagged in your memory, and then put in a frequent-reference file where it can't be discarded. No matter what else you're trying to do, you keep consulting the file to see what it was that went wrong.

I believe that it's the quiet urge behind the classic OCD "compulsions". You're getting ready to go to bed for the night, and you try to remember if you turned off the broiler after you made those steaks for dinner. When you try to access recent experiences regarding the broiler, you pull up the mental picture of turning it on, seeing the hot coils in the oven, flipping the steaks, feeling the heat on your face. But when you look for the memory of whether or not you turned the broiler off, it isn't there. You're sure you turned the broiler off, but the fact that you don't remember bothers you. Maybe you didn't; you've left the stove on before and caught it minutes later.

So you go back and check the broiler. It's off. Satisfied, you turn away and try to access the memory of the knob turned to "off", just to reassure yourself. But the memory isn't there. Again, you see yourself turning the broiler on, seeing the coils, feeling the heat, but there's no followup where the knob points to "off". But didn't you just check? The fact that there's a gap in such short-term memory is unnerving. You turn around, just to make sure the broiler is off, and it is. You turn back, and the memory of it being off is gone. And that's how the behavioral loop gets started; when you try to satisfy yourself that the problem is now "fixed", the red flag on the file is still there.

Day-to-day, it's merely annoying. I don't understand why the critical gap in my memory is always of the most dangerous possibility...as in, why do I always remember plugging hot rollers in, but never unplugging them? Joey Ramone once got off a plane in London and became horrified by the thought that he might have left his apartment door unlocked in New York. He became so worried that he was ready to turn around and head back to New York immediately; he had to be talked down.

I know the feeling. God help me if I try locking my door, test it and it opens...that resets the whole experience, and I know that every time I try to access the memory of locking my door I'll see the knob twisting in my hand and the door opening instead.

Anyway, that's the mechanism, and as I said it's usually irritating at worst when you're talking about day to day events. But the problem is, not only the little stuff gets red-flagged. When there's a negative or traumatic event in your life, that gets red-flagged too. To throw another analogy at it, it feels a little like being stuck on a racetrack and hitting a pothole of wrongness over and over again. You keep reliving the experience, and desperately trying to fix whatever it was that went wrong to make things right somehow. If things were only "right", maybe you could finally move on.

So you try to patch that pothole, but with every additional negative experience associated with the event, it just gets bigger. You hit the ever-expanding pothole of wrongness over and over, and each time the jarring is a little rougher and unsettles you a little more. Soon it's so big you can't swerve to avoid it. And maybe it's something you can fix, or something you need help to fix and someone else isn't willing to meet you halfway. It gets to where you see the pothole coming, you know how much it's going to suck when you hit it, and you get sad and resentful that you can't seem to patch it enough to satisfy your brain.

Meanwhile, in Saneville, all anyone sees is that you're stuck on something that is no longer important to them.

It sucks. And OCD sucks.

Overheard...

2009-10-29T18:24:00.003-04:00

...and quite against my will, but the people involved were shouting their conversation.

Turns out that someone (don't know who) couldn't have cancer because:

"I know a woman has breast cancer and had a vasectomy. She didn't have not a stitch of hair on her head."

Simply too much information to process, right? Anyway, I've learned something new. A couple of somethings!

My "disappointment in humankind" moment for the day...

2009-10-22T17:20:00.004-04:00

I was standing in the fountain drink line at Chipotle, waiting for the guy in front of me to finish so I could get my drink. He finished and stepped away, and I stepped up with my cup out for the ice. At that moment, a boy of about 8 or 9 barged in from the side with his own cup as if I weren't even there.

He took his time making some sort of lemonade concoction, going back for more lemonade, more water, more ice. Every time I said "excuse me" and stepped forward to get my own drink, he casually edged me back out of the way, still ignoring me completely, and added lemon wedges and sugar packets. I stood and watched as he individually stirred in 10 sugar packets, then suddenly needed more ice as soon as I tried to edge back up.

It was all very rude and obnoxious, even for a kid as he was definitely old enough to know better. I was sort of standing there in disbelief, wondering what sort of upbringing might have been responsible for this, when I was shoved out of the way from the other side by his mother, intent on getting her own refill. Yes, shoved. The woman shoved someone with an obviously advanced pregnancy aside to get a refill on a stupid fountain drink. Then, as I tried to edge in again (because I was dumb enough to follow the rules and wait in line?), she stepped between me and the counter to supervise her son in a very leisurely lid selection.

There was a very obvious line for the drinks, and neither mother nor son was in it.

And that was my "disappointment in humankind" moment for the day.

Four years and three children later...

2009-10-14T13:37:00.004-04:00

...we're finally engaged.

We have no immediate plans, mainly owing to my bizarre life-situation and the necessity of doing everything correctly to avoid losing healthcare coverage. In my situation, that would be absolutely catastrophic.

If I were a little more bitter, I would add that to the list of things my cancer has taken from me...the ability to celebrate life and love without worrying about what it's going to do to me healthwise, and the ability to make decisions that aren't dictated by health needs. But bitterness won't change that, so we have to get through as best we can.

Some interesting logic from my local medical center.

2009-10-07T16:37:00.005-04:00

I was rushing around this morning when the phone rang. My local hospital's business office was calling to argue with me over a medical bill that had been going back and forth for a month or so.

I had some pregnancy-related labwork there. They said Medicare wouldn't cover it, which I'm fine with and used to because your average Medicare patient isn't pregnant. So I signed an ABN, which is a paper that says the patient acknowledges that Medicare may not pay this amount. I signed it because I have supplemental insurance that WILL cover pregnancy-related issues, and I knew that the bill would bounce over to them. And I gave them a copy of the supplement card. And they ran it through their system.

So then I got a bill for $111, the amount of this test. And I saw on the bill that Medicare had been billed but the supplement hadn't. So I made another copy of the card and sent it in, with a note that said "please bill this supplement, they should cover it."

Then another bill came telling me my $111 was overdue. The supplement still hadn't been billed. And I called and left a message saying that I had sent in a copy of the supplement card and please bill that.

Yesterday, a bill on their special canary-yellow paper telling me I was really in trouble now. So I called their business office and left another message saying please call me back so we could discuss this.

So when the woman called this morning, I tried to explain. I had my card out ready to read the number to her again. I told her that on none of these bills was my supplement ever billed, and the whole reason I had the supplement was to cover this sort of testing that Medicare wouldn't pay for. And the woman was just absolutely inflexible. She kept telling me that I had signed a paper, I had signed a PAPER. And I kept telling her that I knew I'd signed a paper, and I did because I had this supplement that would cover the test.

And that's when she came up with the real gem:

"If Medicare isn't going to pay it, the supplement isn't going to pay it."

Really? Really? Because I was under the impression that the whole point of supplemental insurance was to help pay what the primary insurance would not.

And that was her reason that the supplement had never been and would never be billed...if Medicare wasn't going to pay it, the supplement wouldn't, therefore they wouldn't even bother billing the supplement. She bulldogged me until I had agreed to a payment plan to pay off this stupid $111.

There is something very wrong with this. I am not very happy.

Another good resource on grief....

2009-10-06T18:16:00.002-04:00

I was poking around and found an organization called "Now I Lay Me Down to Sleep", which provides the wonderful service of professional photography for grieving parents.

Of course, there is an element of self-protection that kicks in when I deal with anything remotely touching the subject of my daughters. As I initially clicked the link, knowing full well I was going to see pictures of infants who were dying or had just died, I was hearing that mistake guy from Scrubs in the back of my head. But it's ok.

I'm not an expert on grief, only on my own experience. I've dealt with others' grief since and it's so personal, varies so widely, that there's no way anyone could call him or herself an expert. Grief can be stoic or it can be twisted, damaging and ugly; it can be gentle and sad or it can be wild, vicious and angry. "Stages" don't happen in some neat procession. It's unreasonable to expect it.

And I guess it's unreasonable to expect those around the grieving person to behave appropriately. I didn't know what I should be expecting from other people, but I understood that sometimes people say thoughtless things without meaning to and I didn't especially hold it against them. Some people do seem to have full cognizance of what they're saying, and I don't know that I'll ever be able to forgive them. Case in point, a woman who asked (almost immediately after my infant daughters died), why any money was wasted on a funeral. Why didn't I just have the hospital throw them away?

That's the sort of thing that settles into a bitter spot in your heart and you can't really control your own emotional reception. You can just try to get through it...in my case, I tried very hard to realize that this was an aging woman, whose filter that normally kept selfish inappropriateness at bay was wearing away. Such feelings and attitudes are not unprecedented for her personality. But no, I can't and won't forgive her for suggesting that the practical thing to have done would be to chuck the bodies of my infant daughters in the trash. I don't think anyone should expect me to.

I've seen from past blog stats that people come here looking for answers on how to deal with the death of a child, and with that in mind I would like to share this .pdf I found on that website. I particularly like the dos and don'ts on pages 13 and 14, although you should know going into this that the author is writing from a Christian perspective and there are lots of Christian references.

Helping Bereaved Parents

I hope that helps out somewhat.

Hey, I'm here.

2009-09-26T21:34:00.003-04:00

Just plugging along. Doing my thing. Grateful to still be up and around.

Repost- The Trans Siberian Orchestra Debacle (from Nov. 16. 2007)

2009-09-08T18:08:00.006-04:00

This entry is from a different blog, actually, but I've been getting all of these irritating email prompts to RESERVE my TRANS SIBERIAN ORCHESTRA TICKETS NOW!!!!!! and it reminded me. Two years ago, under the influence of a little alcohol, Justin persuaded me that people at work said it was cool and it'd be a nice evening out. It was not. I went from indifferent to decidedly Not A Fan.

No way in hell will I be reserving any tickets.

Anyway, here it is. And it's long.

The Trans-Siberian Orchestra Debacle (long)

Because of tonight, a new rule has taken effect between Justin and myself. He is not allowed to buy, or suggest that I buy, anything over $25 if he has any alcohol at all in his system. Because the night he bought tickets to the Trans-Siberian Orchestra, he'd had a rum-and-coke and was very enthusiastic. I stupidly followed along. We have since agreed that these decisions are not to be taken lightly. Especially if we're expected to follow through with actually going to see the Trans-Siberian Orchestra.

Here are some things we found out:

-It was held in the Nutter Center, which is actually just the sports arena for Wright State University. The Nutter Center is difficult to get to. Oh, it looks easy, you see it right as you come off the Fairborn exit. However, you take a convoluted bypass of about 10 miles to actually reach the parking lot. From the parking lot, it's a lengthy hike to the door. All of this amounts to way too much trouble.

-The Nutter Center is also surprisingly uncomfortable. Our seating made Coach class on an airline look roomy. We were in row 20, quite far away, and our seats were (of course) in the middle of a section. That meant a bunch of people had to stand up and move for us to sit, and Justin's knees were almost at his ears. Justin's updates on his level of discomfort became a constant refrain throughout the evening. I wasn't feeling too comfortable myself, as he'd sat on the tail of my coat, couldn't move, and therefore I couldn't remove it. I felt like a chicken in a broaster.

-The Trans-Siberian Orchestra has nothing at all to do with Siberia. This was a shame, because if Siberia had laser lights and power chords I'm sure it would be awesome. Disappointingly, it also has nothing to do with transvestites or trannsexuals.

The first hint of a problem came when we found that there were no programs. Programs are essential to surviving an evening like this; they give you a countdown to the time you get to leave. There was no program; there was no countdown; there was no hope. We had no idea what was coming at us or how long it would take. Oh, if we only knew.

They had a narrator who sounded exactly like James Earl Jones. As a matter of fact, they had two of them, and they both looked exactly like the butler from Fresh Prince, and I couldn't tell them apart. They laid into some story about an angel flying around the world to find a good gift for God for Christmas, or something like that. I don't know. I spent my time watching the lasers bounce off the Wright State basketball pennants and wishing the James Earl Jones clones would shut up. Every few minutes they would, in fact, shut up and the music would kick in.

Most of it was Christmas carols, which meandered off into minor keys for a while as bright lights played in a predetermined pattern over the audience. I particularly enjoyed the spotlights that shone off the bald Midwestern noggins of the people in the floor seats. When the lights played over our section, we were temporarily blinded. The "temporarily" part was a shame because we could have missed the narrator attempting to headbang with the lead guitar guys. No one should be subjected to that.

Believe it or not, even if you headbang, even if you have long hair and your shirt is open, that does not, I repeat, not, make your Christian music badass. It just doesn't. I'm sorry. To paraphrase Hank Hill, "You're not making Christian music better, you're just making Rock and Roll worse." The lyrics were heartstring-heavy, calling to play all the biggies: mentioning recent war-torn zones ("and when the angel flew over Sarajevo..."), incorporating the Iraq thing, you name it. I'm surprised they didn't invoke puppies and AIDS victims.

About an hour into it, they played That Song. You know, the only one everyone recognizes as Trans-Siberian Orchestra. They made a really big deal out of it and there were pyrotechnics at the end.

You've heard of air guitar? Well, one guy actually got so caught up he began playing air xylophone. I about lost it.

You'll be happy to know that whenever Jesus was mentioned (or any character who sounded like he might turn out to be Jesus later), he got a hearty round of applause. Which led me to picture him standing on a cloud above the Nutter Center doing that showy ear-cupping thing like Hulk Hogan. Suffice to say, Justin was in agony. The crowd in general was very Keen on Jesus. The lady on the other side of me nodded knowingly at each turn in the neverending James Earl Jones narrative...she knew what was up. She knew it was going to be Jesus.

She also amused me immensely throughout the evening by her sheer gullability. Every time the Narrator gestured heavenward, she looked up. I don't know what she expected to see, but it was never more than some light casings or stray mica dust.

The songs were interesting (I've never seen anyone headbang to Tchaikovsky) but they just wouldn't let up on the damn story. We kept getting back to this angel flying around the world and I was trying to calculate how long it would be till he was back where he started. We'd think the angel found what he wanted, then they'd all come out for another song. At one very puzzling point, the narrator said, "And all he heard...was a lone cello..." and then trailed off. The song that followed didn't seem to contain a cello anywhere in it, much less a lone one. Maybe they figured that multiple targets deterred any potential snipers.

I passed the time by counting the display screens of people bootlegging on smuggled-in cameras (5), how many people had moving-LED Night Rider-style displays on cellphones (around 8) and how many guys had bought beer and a hot dog at the concession stand (12 in our section). I found myself sincerely wishing we were watching the Dayton Bombers instead.

Finally, the angel circumnavigated the globe and we found out that a guy wanting his kid home for Christmas was the gift (somehow) that he was going to take back to God. The logic was kind of sketchy but I wasn't about to bring it up and postpone things. This was followed by a lengthy song from the "kid" (blonde woman in go-go boots), a lengthy song from the "dad" (miscellaneous guy in a gray coat and fingerless gloves), and three or four by the narrator. I was beginning to wonder just how much script a human being could memorize. This was rivaling Shakespeare. This was rivaling The Kentucky Cycle.

Finally, the angel took the gift to God, or whatever. It left me hoping he kept the receipt.

It couldn't go on for much longer, could it? We squirmed in anticipation. This would be the last song. No, this one. No, this one. It was the longest, most excruciating Merry Christmas anyone had ever wished us.

Finally, the lights came up. The headbanging guitarist who had spent most of the show running frenetically from one side of the stage to the other came back out in an Ohio State jersey. This was an obvious bid for applause, and he got it. (I'm guessing because the audience was comprised mainly of idiots. When they started fanning the "snow" down through the lights, you should have heard the people..."Ooh, it's snowing! But how can it snow inside?" etc)

For the next half hour we were subjected to his comedy routine. "Y'know...I'm staying in Miamisburg...but it feels more like Iceberg!". He introduced the lead players, the narrators, the girl group, and everyone in what we assumed was a curtain call. Our cramped leg muscles were perking up at the thought of being able to move. And then the fateful words came.

"We're at our intermission right now, halfway through...still got a lot of great music for you guys..."

Justin and I looked at one another in horror. Oh, hell no.

We hightailed it on out of there and were out of the parking lot before anyone else. Two hours with the Trans-Siberian Orchestra is more than enough, thanks.

Look at it this way: I took a bullet for you. Unless you really dig lasers and a heapin' helpin' of modern-notion Jesus, this show probably won't be your cup of tea.

I told Justin that unless it becomes "Let's get high and go see the Trans-Siberian Orchestra" (possibly the only way one could actually appreciate the lasers), I'm gonna have to pass in the future. He agreed.

And no, this is NOT my bootleg. I'd never risk my camera like that.

Couple of things.

2009-09-06T21:36:00.002-04:00

Number one, because this keeps rearing its ugly head:

My food art blog: "Lest Anyone Get the Wrong Idea"

Also, another person contacted me for the "Where Do My Books Go" project. An autobiography of Queen Noor...but it hasn't gone far yet. It was just now purchased from the thrift store where I dropped it off :)

Still, interesting to see where stuff ends up.

Goofy-happy.

2009-08-29T20:51:00.002-04:00

Chloe had a haircut today in preparation for the start of official training next week. She's quite happy about the new look. I'm guessing she won't be as happy about school.

Jaw, meet Floor.

2009-08-11T11:33:00.003-04:00

So a magazine...a very, very large magazine, let's note...acquired some of my artwork off the internet and published it without permission.

I knew nothing about it, because it's one of the magazine's overseas incarnations and not readily available here. I found out when a reader told me.

I wrote to the magazine explaining that they used some of my work. I quoted issue and page number and asked if I could please have a copy.

They just responded this morning, wanting to know my address so they could determine how much to charge me.

Care to guess how I feel about this?

Well, I'll be.

2009-08-04T13:31:00.003-04:00

Heard back from the supplement for my Medicare today, following the "report" or "investigation" (it's been called both things) to see if I've been telling them the truth about having Medicare. Turns out that I have been telling them the truth for the, oh, 2+ years I've been dealing with them on the phone. Well, I'll be damned.

*sigh*

At no time did they ever accept my Medicare number, a faxed copy of my Medicare card, or any sort of hard copy (notarized, whatever they wanted) as proof that I was actually a Medicare patient. Instead, they filed a direct inquiry with Social Security and told me I'd hear back within 2 weeks.

They did, however, accuse me of lying and outright fraud, subtly and overtly. Two separate times I was told by their call center people, in a mocking and condescending tone, that there was no way I had Medicare because Medicare is for old people. They were sure I was either too stupid to read the word "Medicaid" correctly or that I was trying to somehow cheat the system.

I guess I should feel vindicated but really I just feel tired.

Also, I could eat a pan or two of brownies right now.

...I should note, just to be fair, that the woman who called me today was very nice. But then again, she had proof in front of her that I wasn't a liar.

sigh- long rant

2009-08-01T17:26:00.010-04:00

I don't remember mentioning it before, so I'll do it now: I am lucky enough to be pregnant once again. Back to the drawing board, right?

My original plan was not to say a thing to anyone until I was viable. 24 weeks at least, or more like 28 weeks, or best-case scenario just disappear and hopefully come back with a kid. Surprise! However, word got out, and since I'm already looking like a watermelon-smuggler, most people can figure it out for themselves.

Earlier this week, I had a cerclage. For the uninitiated, that 's a surgery where you get all stitched up so that nothing can just drop out of you without a great deal of medical commotion. Cécile "just dropped" out of me, no warning or standard labor theatrics whatsoever, and that was traumatic enough to want to avoid it in the future. It's not foolproof, and it only partially solves one of many potential problems, but it's one more contingency covered. When you have the kind of history I do, you have a compulsion to get as many bases covered as you can.

Baby's doing fine. So far. You know how it goes with me.

Anyway.

Because of the spinal cord cancer and the broken vertebrae and all my million other problems, someone high up in the judicial system decided I was disabled by a damn sight; because I had worked and paid into the system long enough, I was enrolled in Medicare. No other insurance will have me, because pretty much any company not in Massachusetts can discriminate against childhood cancer patients. So I love Medicare, and I love everything Medicare does for me, and I am hap-hap-happy to have it.

But when you're under, say, 65 years of age...and you have Medicare...and people do not take into account that you walk a little funny and have a toddler-sized neck...well, you tend to run into a bit of prejudice and disbelief on the legitimacy front. And that can be a bit of a pain. When it's in person, I show my ID, I show my card. Hell, they can look at the big hole in my neck and scar-zipper down my back if they like. But when you're stuck with someone exceptionally small-minded at a call center, it's maddening.

I qualify for temporary supplemental coverage during my pregnancy. Pregnancy-related issues only, and it only pays what Medicare will not. This is hunky-dory with me, and helped me greatly last year with the twins. The minute they enroll you, though, they start pushing you into picking an HMO. If you don't choose one, they say, they'll choose one for you.

And I was fine with this. Last year I asked my perinatal specialist's office which of the HMOs they took, received a short list, and dutifully called the 800 number. Then I got another letter in the mail. Please choose an HMO or we will choose one for you. I called the 800 number again. Then another letter. This went on for months; I got ten or twelve increasingly threatening letters. The sticking point seemed to be the fact that I was on Medicare. I finally had the following infuriating conversation with a call center representative:

HIM: What's your primary insurance?

ME: Medicare.

HIM: (pause) No, your insurance.

ME: Medicare?

HIM: (in increasingly condescending tone) Nooo, what is the name of the company on your in-sur-ance card?

ME: Medicare.

HIM: No, Medicare isn't your insurance.

ME: It is. I'm disabled and I'm on Medicare.

HIM: No. You may be on Medi-caid, but you're not on Medi-care. Does your card say Medi-caid?

ME: It. Says. Medicare.

HIM: No, you can't be on Medicare. Medicare is for old people.

***
It was finally decided, after going way up the authority tree and regretting that the guy didn't give me his name, that the whole problem was that Medicare people aren't allowed to go the HMO route and have to stick with the regular plan.

The blood pressure went up a great deal that day, and when I finally got my notice that I no longer qualified (REASON MADELEINE R [DECEASED] REASON CECILE R [DECEASED]), I was relieved that I no longer had to put up with their ignorant garbage.

And now it's all started again. The letters. Choose or we will choose for you. No, seriously, choose, or you'll lose coverage. I was prepared for it. I made multiple calls to the handy-dandy 800 number and told them what I'd learned last year. They'd say ok, hang up, and then another stupid letter in the mailbox.

I called one last time and left a message for them to call me. And when my phone rang, the woman asked for Andrea. I gave her my case #, aren't they supposed to have all my information readily available? I'm not Andrea.

So I went through the whole spiel again. All the letters, all the calls, and how someone had finally told me that as a Medicare patient I didn't qualify for the HMO thing and that's what was throwing the whole system off. And the following infuriating conversation took place.

HER: I'm going to file a report stating that you claim to be on Medicare.

ME: I am on Medicare. I was born with spinal cord cancer. I'm disabled. I have my Medicare card right here. Do you want me to fax it to you? Do you want me to read you the number?

HER: No, I'll check it from here. I'm going to file a report stating that you claim to be on Medicare, and I'm going to send it to Medicare, and they will let us know if you are actually on
Medicare. And then we'll get back to you in two to three weeks.

ME: But I -am- on Medicare. I have it because I'm disabled!

HER: I'll check to see if you're really on Medicare, and if you really are, you do not qualify for an HMO.

ME: (with muffled scream of obscenities in my head) But I AM ON MEDICARE!

***

So now I wait, I guess, to see if I'm really on Medicare or not, even though I've got a file cabinet of paperwork and a little card that proves I am. Do I have insurance in the meantime? Who knows.

Could someone please let the INSURANCE CALL CENTER PEOPLE know that you can be on Medicare without being a senior citizen? Please?

If this is what Socialized Healthcare would be like, God help us all.

So I kind of snapped and now there's a new blog in the mix.

2009-07-29T19:37:00.003-04:00

From the description I put on the Movie Triggers page:

You hear the word "escapism" thrown around a lot in terms of movies and entertainment, and that's great in theory. But it's not really that simple.

Take a cancer patient, for example. They go into a movie billed as a comedy, only to find that it suddenly turns serious when the main character's suddenly told he has a brain tumor and a week to live. Or imagine someone who just lost a baby, going into a movie that never let on that it would feature a scene where a baby dies. That's not really the escapism these people were looking for.

Sometimes when Hollywood pulls out all the stops to produce one of those "feel good" jobs, and you have no clue what's coming, it might as well be a sucker-punch.

So I just want to help give a heads-up, that's all.

Here's the link to the new site, which is a work in progress. I won't catch all the triggers- I need help. Feel free to comment if you think of more.

Here's what Jeanne, the Assertive Cancer Patient, has to say on the subject.

The curler experiment.

2009-07-24T21:35:00.006-04:00

One of my fondest memories of my recently departed grandmother is her use of those old-fashioned spring curlers with the pink plastic pins to hold them in place. I have no idea why; I've just always associated them with her.

When my aunts were taking care of her belongings and asked me if I wanted anything, that's what I requested, and they found two of those pink plastic pins for me. They have pride of place on my "family shelf" with photos and other mementoes of loved ones who've gone.

A couple of months after my grandmother's death, I was poking through an old-fashioned variety store and lucked upon a box of the same type of curlers. The pins were white, not pink, but it was close enough. The experimentation process has been a bit messy (wet-rolled curls never dry, damp-rolled curls tangle and leave flat spots), but a couple of times I think I got it right. So now, when I have the time and patience, I can do my hair the same way my grandmother did, with much the same result.

The shirt color is a coincidence, by the way.

It's not something I'd do all the time, because my neck won't hold up to overnight rollings, nor my patience to lengthy settings. But it's comforting, in a weird sort of way, to carry on a little tradition of hers.

For more about my grandmother: Violet, my paternal grandmother

Greetings, from the land of No Energy!

2009-07-20T19:41:00.004-04:00

My gallery show opening was this past Friday, with an immense amount of work leading up to it. It was a huge success, but I feel as if every last bit of energy I had has been expended.

For the article on my food-art blog and a link to photos, click here.

:)

Remembering Ms Thanholdt.

2009-07-06T17:18:00.005-04:00

Because I was a quiet and introverted kid who grew into a quiet and introverted teenager, I developed a problem when meeting new people. I knew of the social graces and protocol required to tread water, but was so inept with them in practice that I could never quite trust what was going to come out of my mouth when put on the spot. Lines between brain and mouth were severed. Sometimes people were offended by this and sometimes they were charmed; it was usually luck of the draw, and seldom to my benefit.

I was walking down a lopsided stretch of sidewalk in my little ex-hometown, between a busy street that fed the square and a row of the sort of faded, two-story WWII-era homes that you can find along main streets in thousands of small towns all across America. It was late summer, the week before my sophomore year of high school was supposed to start, and I was hurrying from one patch of shade to the next under the big canopy of oaks that branched over the sidewalk. I barely glanced up, but one hulking oak caught my eye and I stopped to look at it.

It was one of those whose major limbs had been severed so close to the trunk that it was stunted and huge all at once. Giant knotholes, some backed with solid wood and some intriguingly hollow, studded the bark all the way to the top. Here and there whippets of new growth shot out twigs heavy with drooping green leaves. It was a very interesting tree to look at, or at least it was to me at the time.

Out of the corner of my eye, I saw a woman sitting on a nearby porch. She must have been the tree's owner. She was watching me, not committing to a smile but not scowling either. Ordinarily, I would have smiled and moved on. Something about her appearance, though, struck me as literary and a little masculine, and therefore some sort of kindred spirit. She probably tripped a memory of an old photograph of Harper Lee somewhere in the back of my mind, and that plus the presence of the giant oak overrode all forthcoming good manners.

I grinned at her and gestured to the tree. "Well, here's the tree. Where's Boo Radley?"

Over the years I'd become so accustomed to people giving me quizzical looks when I spoke, either because they didn't understand a reference or just plain found it inappropriate to the situation, that the bright, friendly snap of her gray eyes startled me. She threw back her head and laughed.

And a week later, when I was sitting in class, I learned that I'd accidentally delivered a very good opening line to the woman I didn't know was going to be my American Literature teacher.

Ms Thanholdt taught an experimental joint class for those of us deemed worthy, and I was in the first group of students. She taught 45 mins or so of literature, and then Mr. Holcomb taught an equivalent amount of history. The idea was that the tie was so integral between the two subjects that we'd benefit from having both on the plate at once, and it worked well. One lent context to the other, but all I cared about was that I had an extra-long class of two things I enjoyed. I wrote papers about Deborah Sampson and Margaret Sanger. She always liked the papers and always wanted to discuss them after class...not as a teacher, but as someone who takes a lively interest in the same things you do.

We got on splendidly. We had interesting discussions and lent each other books. When I was out of sophomore year, I visited her after school and we talked. I talked about my cancer, which I didn't do a lot of back then. She listened. I didn't know she had metastatic cancer at the time. I graduated. We still talked. I lent her a book on interesting women in the American revolution and she was due to return it to me.

Then, suddenly, in March of 1998, she died. And she had never let on to me, never once, what she had been dealing with all that time. She'd taken over the listening role and gotten me to talk, and even though we'd been going through so many of the same experiences she kept quiet. Knowing she was suddenly gone was a jolt; knowing that it wasn't anything that had come suddenly to her was even moreso.

I've wondered a lot about her reasons for not mentioning her cancer. Maybe it was just none of my business. Maybe she was worried that if the news leaked she would have trouble in the school. I'll never know.

Up until the month I moved away, I would pass down that sidewalk every so often, under the Boo Radley tree, and look up at the porch hopefully...even though I knew full well that the house had been Sold By Owner and now belonged to someone else. The new owner would not be sitting out on the front porch with a pile of interesting books and chuckling at the odd literary references of teenaged passerby. I knew all this, but still I looked. It was invountary.

The city's community foundation has a scholarship in her honor. If one day I ever have money (it's not looking good, but dreaming is free), I'd like to donate to it.

Of mutual interest...

2009-06-17T18:07:00.002-04:00

Since the subject of natural food colorings is of interest to cancer patients, here's a link to some things I've written about them here.

A couple of my bento photos will appear later this summer in Mothering magazine, which is wonderful, but I'm a bit concerned that people will get the wrong idea about my heavy use of color. Mothering is geared more toward an all-natural, no-additives sort of parent, and in the past I've gotten hatemail from parents who believe I'm trying to get them to poison their children with food coloring. So I wanted to make sure to put it out there that I do use natural color, but it's not a perfect medium.

Mandatory bone marrow aspirations for the writers of "House", please.

2009-06-09T20:08:00.005-04:00

I was stretched out on the couch, supposedly getting my recommended amount of "rest", watching TV. I don't have much use for the after-Simpsons weekday Fox lineup or Hugh Laurie doing an American accent, so I skip "House" fairly regularly. Actually, there are a whole lot of reasons I skip "House" regularly, and they just lobbed another one at me tonight.

The episode began like this...two improbably-hot women are having a one-night stand in an apartment. Afterward, one of the women gets out of bed and is startled by a sudden crash- the other woman has rolled out of bed and is having a seizure. And in the next few minutes we learn that the non-seizure woman is one of House's underlings (well, people who watch the show regularly enough to recognize her probably didn't "learn" this, but I did). The underlings I view as the chorus in the background. We defer to your great and alcoholic genius, O House, et cetera et cetera et cetera.*

House tells this underling, in some not-funny innuendo, to do a bone marrow aspiration on the girlfriend. Ethically this would be a bit weird anyway, but I watched with incredulity as the woman was portrayed reclining casually on her side and chatting about the intricacies of last night's sexual encounter. I could see this flying if someone had never had a bone marrow aspiration before, I guess, and didn't know what was about to hit them.

But this lady kept up the casual banter through the disastrously-misnamed "numbing shots" (ooh! slight wince!) and sailed through the aspiration with a mere nose-wrinkle before going right back to her chatter. In one fell swoop, any potential for "House" fandom (not that there was much to begin with) was gone, as far as I was concerned. How freaking ridiculous. How badly researched! How obvious that it was not a cancer patient who wrote or acted this! I was disgusted and left the room.

Lest someone point to "House" as some sort of gospel (much like the woman I encountered when I worked in a hospital, who stormed up and demanded that her child be given 30 units of cc, stat**), let me clarify matters. Bone marrow aspirations are not something you recieve reclining casually. They are not handled with slight winces and nose-wrinkles.

I know that people are going to land here as a result of searches, people who most likely have an aspiration looming on the horizon and are trying to learn what they're in for. Searchers, I wish I could give you hugs and cookies and then more hugs. But instead I'm going to be honest, totally honest with you, which is going to be pretty rare in the Bone Marrow Aspiration department. I tried painting a pretty picture about it once, and then I stood next to my mom as she shook and cried and gagged with the pain. I'm not doing that to anyone else.

It's brutal. It's one of the most brutal tests I can think of, and I have had some real doozies. It's one of those things that would be more at home in a book about Nazi torture. For some reason, a lot of European doctors knock their patients out for them and a lot of American doctors do not. Bless the Europeans, whatever their reason. You want to be knocked out for this, as far out as they're willing to knock you. Valium and Versed IV, if you can get it. Don't be bought off with a Xanax and an explanation that you'll need to "hold position". Do the Europeans have to hold position? Hm.

The numbing shots will numb skin and fat, but they will not numb your bone. If you're having the usual one through the hip, it involves a tool that looks much like a metal drinking straw with a saw at the end. They use this to drill a straw-shaped hole in your bone, and then they use a large syringe to suck it out (sharp, sickening pain). Often, as you try not to vomit and it's actually beginning to sink in that you've actually survived the procedure, they ask (in sadistically chipper voices) that you roll over so they can do the other hip.

No, this is nothing you go into without being very strung-out on goofy-juice. They do it left and right for colonoscopies now, they can do it for you. It will save you a traumatic experience, a horrible memory, and the desire to curl into a ball and cry rather than face it again. I don't know why they insist on hurting people. I'm not trying to scare anyone; I want you to be prepared. I don't want you to go through that feeling of betrayal that comes from being hurt so badly at the hands of physicians. You deserve to know and to make sure you'll be well-cared-for. You've already suffered enough.

There is soreness afterward. I don't know what it is about that area, but it's mighty keen on sore. During my last major spinal surgery, I had big chunks hacked out of the very same area to be plugged into the gaps in my vertebrae. The hip graft hurt more than the spinal surgery did, by a very long shot, and 20 years later I still limp if a bad storm is coming.

Nothing about this is covered neatly with a wince or a nose-wrinkle. Shame on you, "House", for lying to people to whom this might be relevant at some point. I want all of your writers to have bone marrow aspirations. Now. Maybe then you'll understand.

Please don't misunderstand me. It's an important diagnostic. It needs to be done, to stage certain cancers. Don't avoid it because of what I've said here, you'd be doing yourself a disservice. But do make sure that they knock you out. Do make sure that it's not such a traumatic experience that they'd have to club you over the head and drag you in if you needed a second one. There's no reason for suffering like that in this day and age.

Thank me or don't, but at least I've said my piece.

*actually, I think that was Rodgers and Hammerstein, wasn't it?

**this was the type of woman who figured watching ER regularly conferred upon her a casual doctorate in medicine.

On this day in Cancer History...

2009-06-04T22:35:00.000-04:00

June 5, 1989. Twenty years ago.

My grandmother is in St. Joseph's, the same hospital where I was born, recovering from colon cancer surgery. I'm twelve, my cousin is eleven and my brother is eight. We're well-behaved, but we make the nurse nervous. We realize this and try to make ourselves scarce. I make frequent trips to the gift shop to marvel at the display case full of sparkling rosaries. My brother and cousin play Uno in the day room.

This still isn't good enough for the nurse, who insists upon herding us to a downstairs waiting room to watch "the color TV". It mystifies us the way she puts such an emphasis on the color part, as if surely that will sweeten the deal. By 1989, the fact that the TV is a color one doesn't really merit remark.

Nevertheless, our grandmother is asleep and we're not of any use on the unit. To please the nurse, who obviously does not like children, we go watch the color TV. Or, at least, I do. I'm fairly sure my brother and cousin stick to the snack bar and gift shop.

And that's how I know exactly where I was when this happened.

My grandmother, by the way, did very well after chemo and is still going strong with no recurrence.

Wise men write many books, in words too hard to understand.

2009-06-02T11:48:00.007-04:00

Just so we're clear, I'm not poking fun. I only found this interesting.

I was lucky enough to stumble upon a paperback copy of Cry, The Beloved Country in a thrift store for eighty cents. My late-fifties edition was disintegrating, so I nabbed it. It was in excellent condition once I peeled off the loathsome Oprah sticker.

Someone had gone through and circled what must have been words they meant to look up. I was intrigued by what was circled vs. what was not.

Circled:
trekked
palpably
emulate
pervade
intractable
eloquent
denouement
zealous
calamitous
bracken
veld
dell
parson

...and that was it. They were going strong in the intro and had given up completely by chapter five.

Not Circled:
transom
Christadelphians
phalarope
kloof
agapanthus
watsonia
kraal

To be fair, most of the words that are native in origin are used in a context that makes their meaning plain. But then, so are many of the words that were circled, so all bets are off.

Before being smug about someone not knowing the meaning of a word we do, we should be totally honest with ourselves. Those on the circled list... could we rattle off immediate definitions of all of them? How many do we handle via a gloss-over, a get-the-gist understanding? It occurred to me that I could picture a "dell" in my head, but if someone flat-out asked me what one was, I would only be able to muster visions of magical Disney clearings-- butterflies, sunshine, and tufts of improbably soft grass. Well, that and an old laptop I had a few years back.

Anyway, if you hadn't read this book yet, you should. And if you can't bring yourself to commit to a book, watch the film adaptation- one that's relatively loyal to the original message.

No. No, no, no.

2009-06-01T11:26:00.004-04:00

Ju-On: The Grudge, The Wii game.

video game trailer

Please, Keepers of The Grudge. Stop now. I beg you.

The chemical-free English peas are doing really well...

2009-05-31T13:18:00.004-04:00

...which pleases me to no end because I planted this garden with Sara in mind.

The first pods are starting to plump up and should be ready to harvest in a week or two. I've carefully tied them up here and there and tried to make a mental note of where the pods are (sometimes it's easy to lose them in thick foliage.)

Only three crops have failed me this year...the spinach, which hasn't changed from the tiny seedling appearance it had when I planted it a month ago; the lima beans, of which only two came up; and the green beans, which popped out of the soil on schedule only to be eaten full of holes by some unidentified garden pest. That would be the main drawback to having a chemical-free garden.

But the good news is that my three-year-old established strawberry plants are producing like crazy; I can fill a large cereal bowl with sweet, ripe berries every morning. It was worth going without berries the first year, looks like. The zucchini plants are taking off...no flowers yet, but lots of promising growth. I'll have more radishes than I can possibly use. The lettuce is thriving, and the first Roma tomato has appeared. Happily, the trellises of morning glory vines that I'm growing to thwart the neighbors' unimpeded view into our windows are doing very well.

The sweet corn is coming right along, and I only lost one pepper plant to a persistent stray who believes that the growbox is there for his toileting purposes. We even have three little pumpkin vines from last halloween's pumpkin-guts, which I'd planted to see if anything would happen.

And the mint- well, mint is unstoppable. I've a mind to scatter some in the woods just to let it take over the waste area and choke out the poison ivy.

And with all of this home-grown food, I'll know exactly where it came from, exactly what went into it. That's the best part of all.

Battle Heater: Kotatsu....review and spolers.

2009-05-21T09:07:00.036-04:00

If you like space heaters that come to life and stalk gloomy apartment buildings in search of prey, this is your movie.

Kotatsu heaters don't see much use outside Japan, mainly because many homes aren't heated the same way western homes are. Since almost every English-language review of this movie includes a brief explanation, I might as well follow suit.

To westerners, a kotatsu will most closely resemble a low, square coffee table. Instead of the surface we're used to, the top is a grid. On the underside is a heating element housed in a cage, equipped with a long power cord and a switch; you drape a quilt over the table and top it with a detachable tabletop surface. You can tuck your legs (or your whole body, if you're so inclined) underneath the quilt and soak up the radiant heat. Usually they're fairly benign entities. Usually. Cats love 'em.

Hama and Furuchi are partners in a used-electronics business, driving their little yellow marker-decorated van through gloom and fog in search of junk to repair. Furuchi appears to be some sort of narcoleptic who, rather creepily, tends to fall asleep with his eyes rolled back up into his head and a dopey smile on his face. Hama, who regards just about everything that comes his way with a long-suffering sigh, is prepared. He whips out a tazer, which zaps Furuchi back to life.

In the junkyard, Furuchi finds a prize...an old kotatsu, which he explains that he needs because his apartment is cold. Hama tries to dissuade him (albeit passively), but Furuchi eagerly loads the kotatsu into the back of the van. Arriving back at his apartment (and nearly mowing down a freaked-out traveling monk, played by the lead singer of the band Bakufu Slump), Furuchi goes to retrieve his table. But it flies through the air and beans him on the head, leaving the shape of its silver decorative medallion perfectly embossed right between the eyebrows.

Rubbing his head and carrying the kotatsu inside, Furuchi meets up with the first of the many weird neighbors you'll be introduced to: the landlord, a sweet and rather slow-spoken little old man who wants to borrow his soldering iron. The old man, whose name is Nakagawa, shuffles back to his apartment and adorable, round-faced Mrs. Nakagawa, who is helping him put the finishing touches on their clockwork suicide machine. As they solder the last few connections and dress in their nicest clothes, they agree that they don't want to be any trouble to anybody.

Furuchi cautiously creeps past the apartment of his immediate neighbors, a rather questionable punk band called “BLOODY SAVIE” (some sort of English-French hybrid, maybe, that doesn't make sense in either language?). He puts the kotatsu down and rummages around to see if he can get it working.

Interrupted by (but choosing to disregard) the scream of another neighbor, he begins polishing the table.

We see that the scream came from a rather mousy and inept young man, Osamu, who's the boyfriend of a domineering woman called Mrs. Shinden. They've killed her husband Mannen and are halfway through disposing of the corpse, having hacked everything from the waist down into easily flushable chunks. But the half-corpse wears a goofy grin and keeps making sudden movements, which is more than poor, easily-spooked Osamu can take.

Furuchi, meanwhile, is trying to keep a low profile as he works on the kotatsu. It doesn't seem to power-up until he pries off the little silver medallion with a screwdriver. He's thrilled to see the coils begin to glow, but his celebration is short-lived; in his zeal he's lost his balance and stabbed the Bloody Savie drummer in the arse through the wall. Bloody Savie are not amused, and retribution is swift. They do their damnedest to look tough, usually with hilarious results. They're sweet, in a dimwitted and teenagerish sort of way. They kind of remind me of really early Ramones.

Sabii, the slow-witted lead singer of the band, has a demand. He wants Furuchi to carry an invitation to a high-school girl named Kurumi (“-CHAN!”). Furuchi is in love with Kurumi in a quiet, stalker-ish way...he has a freezer-ful of her framed portraits and plans to present the silver medallion to her as a gift...but Sabii is also after her. For whatever reason, the interest of these two obviously-way-older-than-high-school guys in a teenage schoolgirl doesn't raise any eyebrows. Under duress, Furuchi agrees to call Kurumi (“-CHAN!”) for the band.

As it turns out, the kotatsu had to this point been restrained from a murderous rampage by the presence of the medallion, either in embedded silver form or via Furuchi's head slapped up against it in a narcoleptic episode. When Furuchi and the medallion have departed, the kotatsu's power cord slithers through the assorted apartment-debris like a snake, complete with snakey sound effects, in search of an outlet. We're periodically treated to a hilarious, infrared-ish “plug cam” view from the kotatsu's vantage point.

Every power surge in the building gives the heater more juice. The Nakagawas' suicide and a silly song by Bloody Savie get it going; soon it's ready for its first victim. A softly polite and strangely sincere funeral director, charged with carrying out the Nakagawas' last wishes, arrives at Furuchi's apartment and finds an inviting kotatsu baited with a cup of hot tea and an orange. Aaaaannnddd...gotcha!

Having been given a fresh and utterly ridiculous haircut by Bloody Savie whilst asleep, Furuchi covers up with a cap and takes off to present the medallion to Kurumi. Kurumi's behavior is very feminine and attractive by Japanese standards; she squeals in childlike (and somewhat imbecilic) wonder at just about everything. This, and her acceptance of his new mostly-bald head, makes Furuchi so happy that he hands over Sabii's message and bounds off like a doofus. Kurumi, who only has eyes for Furuchi, assumes the invitation is from him.

Hama suspects that there's some evil afoot in Furuchi's building, so he goes to investigate. Finding the medallion gone, he inks Furuchi's forehead and smacks it into the table to leave the emblem behind. Confident that he's now safe, he makes off with the table to disassemble it and solve the mystery. Unbeknownst to him, the kotatsu's taken evasive action and swapped with a heater in another apartment, leaving Hama with an innocent dummy.

Back at Kurumi's high school, all the girls are in tears; the Liberace-like music teacher, dubbed “the Ladykiller”, is leaving to study in Vienna. Sobbing students prepare the flyers for his farewell concert; all but Kurumi, who's busy beaming at the note she thinks is from Furuchi. She drops the map to Furuchi's apartment building, which another girl picks up and distributes in the mistaken belief that it's the map to the concert hall where The Ladykiller is playing.

Furuchi survives a surprise kotatsu attack, realizes what the evil table has done, and flees his apartment; he meets up with Bloody Savie in the hall as they're finalizing plans for the big concert they've got planned to impress Kurumi. Furuchi gapes in horror when he hears the band has rewired the building for more power; he tries to sever the connections, but they incapacitate him fairly quickly.

Bloody Savie are stunned to find that the apartment lobby is filled with women, which they seem to be willing to run with as some result of their (supposed) enormous magnetism. The girls, Kurumi among them, herd upstairs to Bloody Savie's concert area, still believing they've come to see The Ladykiller in concert. Sabii finds that their heartbroken fanaticism makes for a tough crowd, but he's determined to make the best of it.

The kotatsu, however...now armed with a demonic spiked cord and bigger foam-rubber teeth than ever...has other plans.

As all hell breaks loose in the apartment building, Hama realizes his mistake and speeds back for the final showdown. Sabii finally gets Kurumi (“-CHAN!”) alone and makes the somewhat uncomfortable transition from goofball lovelorn singer to potential rapist; I guess that's how they justify killing him off.

Just as Furuchi and Kurumi are being dragged to their doom by the evil heater (now with beefy muscular table-legs), Hama arrives in a truly bizarre getup to save the day.

Battle Heater: Kotatsu is the sort of hilarious, check-your-brain-at-the-door movie that's ideal for those days where you just want a silly, slapstick-y good time. The eighties band Bakufu Slump, who provide the soundtrack, are distributed randomly in the cast as well; Furuchi is played by Pappara Kawai, the group's guitarist; the monk is played by their lead singer; and the bassist and drummer (who, by the way, is my absolute favorite) take their places in Bloody Savie. It's just a lot of fun.

I'm sure if you thought really hard about it this could be some sort of commentary on the Japanese love/fear of technology and/or some sort of home-furnishings vagina-dentata phenomenon, but to be honest...this isn't a thinking kind of a movie. Just enjoy.

Some highlights:

You could easily turn Mrs. Shinden's frequent use of the word, “Baka!” (“Idiot!” “Fool!”) into a drinking game.

The drummer is just completely adorable.
You can entertain yourself by speculating how, exactly, Furuchi suddenly grew the long ponytail.
It's fun to play “count the strings” (pulling toy cars, flapping tentacles, etc).
The scene where all-but-one of the male teachers are grinning with delight that the “ladykiller” is leaving is priceless.
By your second interaction with the Nakagawas, you'll know their lines by heart and could recite along with them if you wanted to.
The weird, Jabba-the-Huttlike laughter of the kotatsu, and the way that you can almost see someone holding it like a shield and walking it down a hallway.
Beware of wacky exploding electronics!

Battle Heater Trailer

MJSimpson's Battle Heater Review

Snowblood Apple's Battle Heater Review

A typically wacky Bakufu Slump video

Sad and sadder

2009-05-20T20:58:00.005-04:00

"Sad" is when you have such a mental catalog of British television incidentals that you match a once-used prop from a seventies sitcom to an oft-used set decoration from a nineties sitcom.

Ooh! I thought. I recognize that wallpaper!

Are You Being Served? "The Club", 1978

"Sadder" is when you first realize that no, they aren't exactly the same...and then you realize that means that at least two versions of this visual atrocity were produced at some point. Yikes.

Father Ted, "Entertaining Father Stone", 1995

"Have" cancer or "Had" cancer?

2009-05-18T08:27:00.008-04:00

Years ago, someone I probably should not name chose a poor and emotionally-charged time to argue pointless semantics with me. I'm not going to go into specifics here, other than to say that it was work-related and I felt that my job was at risk because of some medical issues...not exactly legal, but that never stopped anyone before.

"You don't have cancer," the person told me.

Because I had an immediate, visceral reaction to the words (a mix of white-hot rage and nausea, to be totally honest), I didn't sit down and try to give that person the full benefit of the doubt as to what they meant. We were quite past the benefit-of-the-doubt stage, at least from my perspective, and in context, the words could have meant:

That the person believed, from my general "normal" appearance, that I was exaggerating some sort of cancer story (it's unfortunate, but very likely that they felt this way),

That the person believed I had once had cancer, but was now fine, and was "milking it" for attention and/or time off,

That the person believed I did not have cancer, and had never had cancer.

More was said, but other than dimly registering it as being along the same vein, I can't remember anything exact. I felt ill. Every mental replay I've had since features me lunging across the desk and throttling the person, who as a medical professional should have known better. But even though it was all a sick, angry blur, I know I didn't have the satisfaction of throttling anyone and being dragged off in handcuffs. I know that instead of a violent outburst, I sat in the hot seat and cried pitifully, which the person involved found very exciting and which got me carted off to the employee counselor.

When the counselor's investigation into all of this was finished, I was declared Quite Sane... having cried under severe duress... and the work situation got uglier. Rather than wallow in the ugliness, I left. And that's all I have to say about that.

In the replays, before my memory wistfully twists into swift retribution, I stop to try and remember the exact words, the inflection, anything that would give some hint as to what "You don't have cancer" might have meant. I'm almost sure I heard the person add, "And I don't think you ever had cancer", but my recollection is very foggy.

This person supervised eighty-odd people who did their share of schedule-worming and was probably exasperated dealing with yet another person's needs. Maybe the neurosurgeon appointment I scheduled a vacation day for was the straw that broke the camel's back, I don't know. Maybe the person needed me for something that day and was angry to realize that I was gone, even though it was prearranged. I'll never know. But this person was also a creature of absolutes, and I think it's very likely that they drew a very sharp distinction between HAVING cancer had having HAD cancer; no gray area. I think that's most likely.

When do you stop having cancer? When you go into remission? No one ever mentioned "remission" around me because my cancer never went away. It's still there in my spinal cord; it's been there for 32 years. It was inoperable, it was radiated until it stopped growing. It's a non-growing lump of cancer smack dab in the middle of my spinal cord that could start growing again at any time.

Do you stop having cancer when it stops affecting your daily life? I can't bend my neck to gather momentum to go up staircases...I have to hand-over-hand it up the railing like a mountain climber. Descending staircases is dangerous because my balance is bad. I actually have entire nightmares that consist of being in a narrow hallway with staircases ahead of and behind me wherever I go.

The cancer-lump causes a disjointedness between my brain and the rest of my body. It's like trying to drive a charter bus instead of a compact car; it's disorienting, you don't have a good feeling for what might be ahead of or behind you, and you can't really trust your senses. My feet don't feel temperature. My right leg periodically just stops working for no particular reason, and I don't know it's going to happen until I stand up suddenly and fall flat on my face.

Do you stop having cancer when your treatments are finished? I wrapped up my last radiation treatment 30 years ago. My last major spinal surgery was 20 years ago. But the radiation destroyed my teeth; I'm in the dentist's office all the time, having broken enamel-compromised teeth repaired. It cooked my muscles, which became stringy and tough and which give me hundreds of spasms, small and large, per day. It killed the bone tissue of my cervical vertebrae, which ensured that I would have toddler-sized vertebrae forever. The vertebrae themselves are a patchwork of dead, chalky bone and grafts from my hips to try and shore things up. They break periodically, landing me in the hospital for months at a time.

Do you stop having cancer when you're given a clean bill of health? I go to most of my specialists...neurosurgeons, neurologists, oncologists... every six months, because they're always waiting for the next fire to put out. No one knows what the radiation will cause or whether the original tumor will crank up production again. No one knows what to do if it does. I've never been given a clean bill of health because my cancer and I have been in a standoff for three decades.

So do I have cancer, or have I had cancer?

The way I look at it, both are true. I think that if you've got cancer in your past and it continues to cause you day-to-day problems you still have to deal with, you have cancer. And I don't mean that from a "you didn't win" standpoint, I mean it from an earned-respect standpoint. People shouldn't be able to brush off your needs because you aren't bald anymore, or you're not undergoing radiation anymore, or because your cancer might have been novel to them at first but worrying about you is getting old.

It's never a "you didn't win" thing. If you woke up this morning, you won for now. The more rounds you can go, the more times you can say, "That the best you've got?", the more experiences and memories you fit into your life, the more victories you stack up.

Beating cancer isn't a matter of philanthropic walks and t-shirts and ribbons. Beating cancer is an ongoing process of getting back on the scan table when you want to curl up in the fetal position and forget your cancer ever existed. Beating cancer is throwing the phone and yelling "FUCK!" when you hear bad news, then taking a deep breath and signing up for another round of chemo. Beating cancer is saying, "You know what...I had cancer, and this nonsense is still part of my life, but if I have my way I'll live long enough to die of something else."

Choose the verbiage that works for you. If it's a chapter that's over and putting it behind you feels right, say you had cancer. If it makes you feel better to think of it as an ongoing process and a daily trial, say you have cancer. I'll stick with both.

The Grudge 3- Review and Spoilers

2009-05-15T12:43:00.009-04:00

Oh, just the one, then?

Sigh. Here we go again.

For what it's worth, I counted the "curse" title screens as part of the flashbacks.

Ok, so this is the seventh time around with the whole Grudge franchise, eighth if you count the two shorts from Gakko no Kaidan G (School Ghost Story G) that started this whole mess. It's the one movie in the series not directed by Shimizu and not starring Takako Fuji as the gaping and guttural Kayako, which should have been a warning to us all. (Takako Fuji fans take heart: being the Grudge movie that it is, you'll still be able to see plenty of her in the flashbacks we all know and love. Well, the ones we all know, anyway. Thoroughly.)

This is some very high-mileage old footage.

As ever, we start off with the sole survivors from the last Grudge movie meeting their untimely ends. It's all even more predictable than usual, which is really saying something. In Chicago, where the new curse has taken hold, the boy-survivor is in a padded room. He's frantic, claims that a boy and a woman with long black hair over her face are after him, and begs his keepers not to leave him alone. Of course he ends up being left alone, and of course he winds up dead. The pensive teenage girl from the last movie takes a bath and disappears, and so on.

Tense! Pensive! We've got it all!

We're introduced to some new characters: Gretchen (Marina Sirtis, known best as Deanna Troi on Star Trek: TNG), a kindly artist type; Max (Gil McKenny), the landlord of the doomed and improbably gloomy apartment building; Max's sister Lisa (Johanna Braddy), whose mission at first is to sleep with her boyfriend Andy (Beau Mirchoff) in as many of the vacated apartments as possible; and Rose (Jadie Hobson), who fills her role as the dippy and "tragically ill with an asthma-like disease" youngest sister very well. As a matter of fact, she reminded me almost uncannily of Alexandra Holden in Drop Dead Gorgeous.

It all follows a very Grudge pattern, except that (as in The Grudge 2) it doesn't necessarily make sense anymore. There's a cursed apartment, but you don't really need to enter it anymore to be affected. Essentially all cast members are cannon fodder now. Not on a Battle Royale II scale, but close.

Jake, the aforementioned sole child-survivor from The Grudge 2, is held in a mental hospital after the death of his entire family. He begs his psychiatrist (Shawnee Smith, who was in a bunch of Saw movies and played the ditzy receptionist on Becker) to stay with him. She leaves, claiming that she has other patients to care for. As soon as she 's gone, you know what will happen, right down to the flashing lights and the white arms coming out of nowhere. Of course the orderly sees the kid flying around on the security screen and calls the psychiatrist, who of course comes rushing back just in time to see the aftermath...you know how it goes.

That Jake "footage" looks suspiciously like a recycled screen test.

Strangely enough, she has plenty of time for him after he's dead and you never hear a peep about those other patients again. She turns detective, showing up in the apartment building to take pictures of the cursed apartment (gotta get her in there
somehow, even if it doesn't matter anymore). She meets up with Lisa and tells her about Jake's death, which helps to bring her out of the selfish nympho haze. Lisa's character now goes from silly and oversexed to concerned and vaguely confused. Some Kayako (Aiko Horiuchi this time) and Toshio (Shimba Tsuchiya this time) appearances help the transformation along a little bit. Because this is an American movie, Toshio now wears shorts.

Nope, no scary here.

Meanwhile, 8 year old Rose is leaving toys for the "little boy" in the hallway, although everyone there knows full well no little boys live in the building (and we all know full well who the little boy is), and Max is having a tough time keeping his tenants alive.
Gretchen's taken out of the picture fairly early, as is the other survivor of The Grudge 2 whose mother tries moving her out of the building. Max takes a dim view of Lisa's activities with her boyfriend, which are curtailed anyway when she realizes they're about to have sex in the cursed apartment and it puts her out of the mood. Max feels that Lisa should be more responsible and help him with Rose, who is showing signs of worsening disease (her asthma attacks may in fact be caused by Toshio popping up here and there, although she seems to be the only one of us he startles).

They did the Toshio jump scare twice in quick succession, in case the first one didn't take.

Lisa, on the other hand, wants to go to New York, be a fashion designer, and lead a life of sexy abandon with her boyfriend. Sometimes. The boyfriend Andy, who is first fleshed out as the "douchebag" character...sometimes...changes slightly partway through the movie and turns into more of a blah accessory you don't care much about, like the boyfriend of Sarah Michelle Gellar's character in the first Grudge.

Shouldn't that photo be dog-eared by now?

Things abruptly cut away here and there to Tokyo, where a young career woman (Emi Ikehata) is having nightmares and being harassed by coworkers. For some reason, news clippings about the Chicago deaths are being left on her desk anonymously. The reason some deaths in Chicago are covered extensively by the Japanese press is never explained. Her husband (maybe?) tells her to ignore it, that there's nothing she can do. But she pulls a box from under her bed with a look of steely determination and takes off for Chicago.

Now Max is trying to court the new potential tenant from Japan in order to keep his job as the superintendant of this improbably dim and gloomy apartment building. The building owner periodically shows up to threaten to let a management company take over. Max begins showing signs of increasing strain and begins coming down on Lisa more severely for not being responsible with Rose. You can see it happening long before the flashbacks kick in and make it obvious, but you know that eventually he'll be possessed by the ghost of Kayako's husband, re-enacting the whole original turn of events yet again.

Along with the original flashback footage, it seemed very likely that he was borrowing a bit from Jack Nicholson in "The Shining".

The young woman from Tokyo manages to corner Lisa at some point to let her know that she's Naoko, Kayako's sister (yeah, surprise) and that she can end the curse, but only with Lisa and Rose's help. Why her name is Miss Saeki, meaning she's single and has her married sister's last name, or why she needs Lisa and Rose specifically is never made clear, but we go through the long process of various characters trying to put together parts of the puzzle and meeting their grisly ends at the hands of a strangely flopsy Kayako. Oh, yes, she's a-flippin' and a-floppin' like a fish out of water, as the song goes.

Oh, hey! Flashback footage from The Grudge 2! Well, I'll be!

So when Naoko finally secures the cooperation of the vaguely terrified Lisa and the dippy-yet-resolved Rose, will this end the curse in time? Will it end the curse at all? Well, you know there are six (or seven) earlier incarnations of this movie, what do you think?

This movie makes you feel as if you surely have some sort of incredible prophetic ability. If you've seen any of the others...any of them...you know all the tricks. There will not be a single surprise for you in this movie. You see a dim hallway and you know that the lights will buzz on and off and that Kayako will appear, flopping and jerking spasmodically toward her victim. You know when you see a set of staircase rails that Toshio's going to be squatting and gripping them sooner or later. You know when you see a blur of white in the background that Toshio's going to do the old gape-and-yowl as they slowly focus on his face.

Well, I take it back, there is one surprise. They make a very big deal of showing staircases in the background of the apartment building, but I do not believe I saw a single Kayako Staircase Scene(tm) that wasn't in a flashback. So there is that. And they seem to have replaced many of the copious gobs of black hair with random splatters of black paint. There are fewer sudden appearances and pervasive Kayako-croaks, and no ghost cellphone calls at all. This is hardly groundbreaking stuff, but it sets this movie slightly apart from the others. Ever so microscopically slightly.

Nope, no scary here either.

The makeup, it was not good.

There are flashbacks aplenty, just as in every single Grudge movie that came before. I didn't bother to count minutes and come up with a runtime ratio- Snowblood Apple does a way better job at that than me. Enough, anyway, that Takashi Shimizu (the original director) probably deserves some sort of co-credit.

The story is just getting sloppy at this point (as it has been for some time) and I'm not sure the flashbacks help anymore. Either you watch this because you've seen the others and been through it already, or you watch it because Hey Look at that Creepy-Croaky Japanese Lady Stalking People, neither of which makes flashbacks relevant. The series has become so slapdash and diluted that I can see how a lot of people dismissed it as a Ring ripoff. Which in turn was...oh, never mind.

Oh-ho! Never saw that coming!

Fellow veterans of the series might find this line as funny as I did...

(haha, like Kayako, amirite? *highfive*)

The runtime's about 1 and a half hours, at least 20 mins of which are flashbacks. Unlike the first Ju-On movie I was ever exposed to, which was so creepy it felt as if the DVD itself might have some vague aura of evil about it, this didn't even make you feel moderately uneasy. The Really Big Twist could be seen coming from about 30 minutes into the movie. The Slightly Smaller Twist was irritating when you realize it opens the door to more of this nonsense being made. I have been more startled by jack-in-the-boxes. (Jacks-in-the-box?)

What's wrong with this picture?

2009-05-13T18:34:00.004-04:00

You're looking at my Medical Paperwork shelf. I'm working on having digital backups of all the important stuff, although sometimes it's hard to tell what exactly the "important stuff" is.

If you said that the fact that the Wellcare (Medicare drug coverage) paperwork has its own basket, while everything else (even the copious Medicare paperwork) can fit in file folders, ding ding ding. You're right.

Good to see the Paperwork Reduction Act is alive and well, eh?* It seems like I get a new formulary, or formulary addendum, every few weeks. I get big multi-page statements of the drugs they helped pay for, even though they're more or less the same every month. It seems like so much waste.

I went to the website to see if signing up for a site account would get rid of it, but they don't seem to guarantee anything. I don't know what it is I'm supposed to do with all these formularies, but I'm afraid to throw them in the recycle bin. Couldn't they just maintain and update a database and we could check that instead? Couldn't they send me an e-statement letting me know they've been helping pay for the same Synthroid and Baclofen they've been paying for for years?

It irks me.

* That was partially tongue-in-cheek. I know they aren't bound by it, but it wouldn't hurt.

Where it all began...

2009-05-07T14:43:00.007-04:00

There he is, at the top of the waterski pyramid, standing on the shoulders of my great-uncle and grandfather. This was long before he became the great-grandfather I knew, the guy we called "Poppy", who was perpetually chomping a Swisher Sweets cigar and messing with my toddler mind by telling me that tapioca was made from fish eyes.

Incidentally, I have trouble with tapioca to this day.

Our family legacy of cancer began with this great-grandfather, who basked in the chemical soup of the Ohio River in blissful ignorance. Some time before this picture was taken, he developed lymphoma. Mind you, lymphoma now is enough of a pain-in-the-ass. We're talking lymphoma then, good old late-60's lymphoma that no one knew how to handle. He got radiation therapy...and, again, that's 1960's radiation therapy, which you and I well know is worlds apart from what we have now.

There was no "remission", "cure", whatever. He had lymphoma, he got radiated, then he didn't have it. There was no discernible change in the man, other than the fact that he somehow became tougher, angrier and more wiry than he already was. He had an unrepentant Swisher Sweets habit and scattered chemical pesticides all over his Florida property. He waterskiied the Ohio River enough to have received a lifetime's worth of complimentary polluted enemas. We gasp at this sort of daring now, but he led a pretty matter-of-fact existence and cancer didn't deserve any more consideration than a cold you had two weeks ago. You have palmetto bugs, you scatter pesticide. What's the problem?

Poppy had an impressive disease resume and cancer was just a bullet point. I believe at some point he had typhoid, or something like it. Perhaps diphtheria. A few other communicable diseases that are now just initials in a vaccination. Typhoid couldn't take him down, why should cancer?

So he pronged the proverbial middle fingers at lymphoma and went on with his life. He waterskiied with my mom and uncle and refused to let them in his boat if they were wet. He drove broken down tractors to Cadillac dealerships, affected a bumpkin manner, and paid the sneering salesman in cash. He kept a pet blacksnake loose in the garage to handle the rodent population. He bought dime cans of potato sticks with hundred-dollar bills. He told his horrified great-granddaughter that the tapioca in her pudding was fish eyes.

Eventually he got cancer again, this time in the lungs. Recurrence or not? He always had a cigar clamped in his jaw and God only knows what else he was into. He handled it. And when he later had brain mets, he handled it, ya-shoulda-seen-the-other-guy style. Kicking, screaming, stabbing it in the snout like Quint in Jaws. Bedridden, he defended a half-eaten bag of chocolate stars against my marauding great-grandmother, roaring out of a pretend sleep and brandishing a frightening cane, with which she knew he meant business.

He lived his life, and if cancer had set his sights on him, it was damn sure going to have to work for it.

Someone was looking for info on halo brace scars.

2009-04-30T13:00:00.005-04:00

Nooo problem. My halo brace was bestowed upon me (read: screwed into my skull under conscious sedation) 20 years ago this November. Therefore, I'm in an excellent position to show you what the "pin" holes look like long-term.

"Pin". Hah. That name never fails to make me snort derisive laughter. They're sharp-ended bolts, is what they are.

Ok, here's me on this lovely April morning. I'm not making an effort to cover the scars at all; gave up on that years ago as I no longer care. Can you spot them?

Pay no attention to the small lump on the left side of my forehead...that's a battle scar from ten years prior to the brace. I was facedown on an operating table for an 8-hour laminectomy and fusion, and I've had the lump ever since.

Here's the scar, zoomed in.

Right smack dab in the center of the frame. See the dent? So it's not too bad. The appearance hasn't really changed since the wounds first healed over. Now, as you can see, I'm a very pale person and that probably does make a difference. If you have darker skin, the scars will probably show up more.

The ones on either side of my head, above and slightly behind my ears, are the same. No hair grows on them, and there's a minor mini-cowlick effect that's never really caused me any trouble (my hair provides enough curly-frizziness to be a distraction).

Every once in a while (right now, actually; maybe because I'm thinking about it?) I'll get a tiny stab of pain at one of the "pin-sites". It's not particularly distressing and goes away after a second or two. I think it's just some sort of cross-wiring with the nerves. Otherwise, there's no tingling or pain at all.

Hope that helps, and please leave a comment if you have anything else you'd like to know :)

Thanks, almost forgot about my cancer there for a minute.

2009-04-27T11:45:00.005-04:00

One fun thing about being born with cancer, and being a long-term patient, is that everyone is always trying to figure out how the cancer came about or where it's headed. The former's not quite as depressing as the latter. Anyway, I'm part of several big studies, and they periodically want DNA from me.

It's always an interesting process. Some places want you to rake at the inside of your cheek with "enclosed swab" and mail the swab back. Some want you to gargle and swish with "enclosed mouthwash", spit the result into a vial, and mail the vial back. This time around, I had to spit into a pronged cup. The spit (sans bubbles, the instructions noted) had to reach a certain line. Therefore, the instructions went on to counsel me, I needed to be patient...it could take 2 to 5 minutes to produce the amount of spit necessary.

I've done enough of these to know that spitting on command is a lot like refraining from moving/breathing/swallowing during a scan...when you have to, you can't. So I stood there in my kitchen like a fool, depositing tinier and tinier amounts into my little pronged-plastic spittoon. It took about 10 minutes for me to reach the line, probably because my salivary glands have been radiated like everything else and are poor producers. The cap of the vial fit over the prongs, which (when the lid was screwed on) punctured some sort of solution within the cap that I'm guessing bacteria-proofed the sample and did whatever needed to be done to prep my buccal (cheek) cells for observation.

It's all worth it when you put the unwieldy packet, marked with large labels as being a HUMAN SPECIMEN, into the mailbox and peep out the window gleefully as the mail carrier does a double-take.

I visited my oncologist last week. It's been a year, because I got thrown off my normal schedule with the twins. Got my bloodwork, which (as far as we know) is more or less ok...counts were ok, which surprised me because I had a nagging suspicion I might have some sort of leukemia. I've been bruising and bleeding more easily than usual, so I had to get restuck while he checked for a clotting disorder. Jury's still out on that.

My veins have about had it. I have one good vein (which, if you want to get technical and if I was still in school to Be Somebody, would have been called the median cubital vein) in what's loosely referred to as the cubital fossa- for our purposes, that hollow on the inside of your elbow. It's a good vein, it's a big vein, it doesn't roll or blow out. It's my one cooperative go-to vein, specifically for venipuncture. But look at the picture. Each of those dents is a blood test, and the white scarlike patches are where the dents are so old they're not even dents anymore. I've lost count of the number of times that vein has been accessed. Perhaps hundreds, over the course of my lifetime. Poor thing, I wonder how much longer it can last :(

So because I had to be stuck twice and my right arm was already bandaged in all the latex-free stuff we could slap onto it, they had to restick me in my left arm. I walked out with both arms bandaged and a matching set of bruises. It's funny how not-a-big-deal that becomes, especially when I see one of the Medically Fortunate making a big deal about getting stuck even once, or begging the phlebotomist for a butterfly needle because they've heard it hurts less.

So barring some disaster that's lurking in my second batch of harvested blood, I'm good for a year without seeing my oncologist. That's not as optimistic as it sounds- I have neurosurgeons and neurologists who would be the first to see a recurrence on an MRI. My oncologist is mainly there to failsafe me on the long-term ramifications of my treatment. He also laughed when he saw my hand infection (that doesn't seem to have been affected at all by this last treatment) and said he thinks we're just making it angry. I agree.

In the meantime, I'm keeping myself amused getting the garden in...strawberries, zucchini, lettuce, spinach, tomatoes, sweet corn, peas, green beans and basil...and playing with Chloe outdoors. She's found that she loves being sprayed with the hose.

And "Be Patronizing to your Support Staff" week finally draws to a close.

2009-04-24T12:30:00.015-04:00

This week always brought out the worst in me.

When I worked at the hospital as a physician-executive's personal harried flunky, I hated this week. My mood would darken mid-April because I could feel it coming.

I was not a secretary, let's get that straight right now. However, I replaced a secretary, and although I was more or less an untitled entity who did some office work, I did many other things (including writing reports that the physicians sometimes took credit for) that weren't secretarial so much as exploitative of the fact they had temporarily enslaved a medical student.

Because people who were used to seeing a secretary sitting there in the office, and because it's true that I was often seen typing on the computer and sitting at my boss' side during meetings and taking notes, I got pigeonholed. I understood it, but I resented it. I'll fully admit I sat there with a massive chip on my shoulder because, in my head, I'm no more a secretarial person than I am an Olympic track and field star. The label just did not fit.

I don't have a problem with people who like to be regarded as secretaries, but I was not one. I didn't do the work of a secretary. And it made it worse that when coworkers uttered the word, it was laced with expectations of companionable grandmotherliness, total lack of upward-mobility potential and possibly some limited intellectual capacity.

My supervisors found my sourness funny. It took years of hard work (regarded with snickering and smirking by said supervisors) to get the title changed to something more accurate. My boss thought he'd reached a compromise (placate me, while filling the need to continue the joke about how lowly I was) by elaborately referring to me as his Administrative Assistant. He may have been joking. Sometimes the jokes were real, sometimes they veiled other things. But I could never bring myself to laugh.

And so, when late April brought around Secretary's Day, then Secretary's Week, then somewhere they made the condescending switch to Administrative Professional's Week, I knew that with my mindset it was going to make for a very bad time. And it was, mainly due to everyone's best intentions.

I got it from all sides...people who wanted to thank me for being the secretary they thought I was, or who were unsure of what to call me but wanted to be on the record as having done something for me anyway, and so on. I got sweet handcrafted cards with SECRETARY all over them and very nice bouquets from the boss thanking me for being a great Administrative Assistant (the card didn't include the italics, but I knew they were there). And no, I'm not trying to be a bitch about their efforts. I appreciate what they were trying to do. However, I would much rather have avoided the "Let's All Stop and Take a Minute to Realize What We'd Be Without Our Servants to do All The Stuff We're Above Doing" thing entirely.

Not even servants. Secretaries. To me, that concept is poison. Thomas Harris was right in Silence of the Lambs when he said (I'm paraphrasing) that once someone has you pegged as a secretary, that's it, no more credibilty. Scott Adams was also correct in this Dilbert strip :

The thing is, indignation over the title is pretty strictly a generational thing. There are women who entered the workforce years ago who have been saddled with the "Secretary" label all their lives and are perfectly fine with it. The woman whose position I filled when she retired was that way. She liked being the unit's den mother, liked being able to control access to the Big Boss, didn't mind being the subordinate. I couldn't stand any of that stuff. Nor could I stand the thought of being a pawn or trophy of someone's new job status, as in, "Congrats on the new status, newly elevated nurse or physician... you can have this secretary to use."

I think that "secretaries" in the stereotypical sense, the Girl Fridays of old movies, are a dying breed. Opportunities for women are different now. We don't have to content ourselves with doing someone else's mindless typing, filing and phone-answering. If that's where your aptitude lies, go for it, but it's not mandatory anymore.

Even within the constraints of the "secretary" title, it's not like that anymore. Secretaries are allowed to be men. Secretaries are allowed to be educated. Secretaries are allowed to do more sophisticated things commensurate with their abilites. Above all, they are entitled to (gasp) NOT BE A SECRETARY ANYMORE if their education points them in another direction. That seems to be the especial sticking point.

All of this is why, when someone would pause as an afterthought and stick their head in my doorway, giving me what they must have thought was a look of Utter Sincerity and telling me, "Thank you for all you do", it only succeeded in roiling me. It came across as so much condescension, sort of a "boy I'm glad that someone does all the stuff I'm too important to do" thing that gives me pause before I jump on the bandwagon of thanking military people in the same manner. There's an awkwardness that hangs in the air after such a thanks. A better gift would be not to make things awkward at all.

The flowers my boss sent me were always beautiful and, because he had very good taste (or perhaps because his wife did; I never knew exactly where the flowers originated, but he was a snappy dresser) exquisitely tasteful. I did appreciate them. But I would rather have received the recognition for the efficiency measure I took that saved the hospital hundreds of dollars a month (instead of the hastily printed out "way to go" note). I would rather have been taken out to lunch for my work in tracking down expensive medical supplies that had vanished from the stockroom.

In short, I would rather have been recognized casually for something I had actually done and not elaborately, with much patronizing ceremony, just because the calendar said to. I wonder how many others across the country wince when they see the day approaching.

The funny thing was, when my health became such where I had to leave my job, I was replaced by the same person whom, years earlier, I had replaced. And since the job had become so radically different and non-secretarial, we had to spend my last two weeks training her for a completely different job. Gone were the Rolodex file, the typewriter, the steno pads. She'd never had to use mathematical formulas to write statistical reports. Computer use was a problem. Still, everyone was glad to have the Grandmotherly Companion back, someone who wouldn't scowl as much as I did. There was a cake when I left, but I doubt I was missed. I was too surly; I caused problems.

Appreciate people who are there for you, not servants who do things that are beneath you. And yes, people can tell which one you really mean.

Bonus Materials:

the kind of condescending stuff I hated

"multitasking his/her little heart out"!!!! They actually said that! Bastards!

FTD, raking in the cash from bosses everywhere. Quick! Make sure you get a nicer bouquet than the one your coworker got his "girl"! Parlay it into a status competition, who gives their servant the nicer token gift!

Blind for a Day

2009-04-20T21:55:00.003-04:00

It never freakin' ends.

It's been that kind of week around here. It seems like every one of us has been into some medical mess this week. First my boyfriend, then Mom, and when I was fit into the eye doctor's schedule this morning after a last-minute cancellation, I got a helping of it too.

Apparently my "pre-glaucoma", which was eye pressure brought on by a completely unlikely circumstance (pigment leaking out of my irises, clogging up the works), has upped the game and I'm now a "glaucoma suspect". Apparently our campaign of doing nothing was ineffective.

This led to lots of boring crap I won't go into, save that it was very involved and more expensive than I would have liked. I was introduced to some exciting new machines, one of which flashed a red strobe light at my optic nerves and rendered me effectively blind.

I'm serious. It came on slowly, but when I was sitting back in the chair I noticed that everything kind of looked mosaic-y around the edges, as if I was looking at the room through a piece of privacy glass. Then I could see light, but I stopped being able to see shapes.

Going into the office, here's what the flower looked like:

Coming out, this is EXACTLY what it looked like (thank you Photoshop with your wonderful filters):

If I squinted very, very hard (as I had to do to write the check and try to find a number on my cellphone), I could just barely get vision like this for short periods of time:

It sucked. My vision isn't great, but I appreciate it a lot more now. Mom had to leave me behind and go to an emergency room in Dayton to be looked after, so it was up to me to navigate my blind ass home. I couldn't see the numbers on my cellphone:

...and when I finally did get hold of my dad to pick me up (through the boyfriend, whose number I fumbled onto and who called for me), I found that waiting for a car is much more difficult when cars are only distinguishable by what color blob they are. I didn't want to walk up to random black blobs that may or may not be my dad's Jeep. It was definitely a weird time.

Coming home, it mostly made for comedy. I yelled at my purse to get off the kitchen table and nearly added half a cup of whipping cream to cupcake batter instead of Egg Beaters. I found that I could send text messages somewhat reliably by holding the phone about an inch from my nose. I could type from memory, although I had no way of knowing if what was going up on the screen was what I wanted or not. I dreaded taking Chloe out because I couldn't distinguish yard-mud from dog poop or tan sidewalk from tan flowerbox. It pretty much looked like the Dick Van Dyke intro every time.

It did, however, impress upon me that it's in my best interest to stay on top of the glaucoma thing lest I lose my vision altogether.

Mom is ok, the boyfriend is ok, and we'll all live for now, although I have one hell of a headache and blame that strobe thing.

I am luckier than many that my sight did eventually return, at least to the strength to which I'm accustomed, just in time to see this beautiful double rainbow when I looked outside.

....in which I flip my trike.

2009-04-18T19:55:00.003-04:00

I prefer not to think of myself as greedy. I like the word expedient much better.

Well, something had to make me feel better after looking like a dumbass in front of the entire neighborhood.

What happened was this: my parents set aside a large amount of pea gravel for me to use in my landscaping project. It filled one wheelbarrow and two large garbage cans, none of which I could handle. So what I've been doing is transferring it, in the back basket of my trike, in the biggest loads I can manage. I have a storage bin in there, I scoop pitcherfuls in until it has all it stands and cain't stands no more, and then I laboriously pedal home.

Normally I count the pitcherfuls of gravel that go in. Six pitcherfuls is about 150 lbs and about as much as I'm safe doing. I'm pretty sure that on my last trip, I miscounted a couple of pitcherfuls. The neighborhood kids were distracting me. Then I added idiocy to simple poor judgement...I looked down, thought "well, I could probably do one more pitcherful in there, it's one I don't have to haul later."

And I dumped in the pitcherful and closed the garage door, and just as I turned the trike to push it down the driveway and pedal home, it went ass-over-teakettle.

To be more accurate, ass hit the ground at great velocity and teakettle reared heavenward like a spooked stallion. My front basket, which held all sorts of garden-y odds and ends, spewed its contents backwards and a hail of seed packets and aluminum stakes rained down. Somewhere in there, the plastic assembly-cover on my handbrake splintered, taking with it some sort of vital screw. When I finally got things cleaned up enough to get the bike righted (no small feat), I found that the handbrake was now useless. Good thing I still have the pedal-brake.

More than anything, though, I felt stupid. I should have just left the one extra container of gravel. God only knows how many extra containers were in there already.

In Little House in the Big Woods, a toddler Laura Ingalls Wilder takes a trip to Lake Pepin, WI, with her family. She runs along the shoreline and finds so many pretty pebbles that she jams both her pockets full. When her Pa is lifting her into the wagon to take her home, the weighted-down pockets rip out of her dress and leave her with two gaping holes in the seams. They all have a good laugh about the greedy little girl who got what she deserved.

Yeah.

The unmitigated joy of the halo brace.

2009-04-18T17:29:00.005-04:00

I noticed, when I remembered I can check blog stats (I usually forget they exist), that a lot of people are stopping by looking for halo brace information. I'm guessing that you or a loved one are either recent recipients, or your doctor might have told you you're going to need one, and you're trying to figure out what's in store for you. I can help you out there.

A halo brace is something bestowed upon you when your physician does not want your cervical spine to move at all. Not even a tiny bit, as it can in the stifling Philadelphia collar or the cushy-but-mildly-restrictive soft collar. I lucked into one after my last spinal surgery, when I was up and around too soon and broke a fresh fusion that was probably already doomed from my radiation therapy.

I was trucking around the neuro unit in my wheelchair and Philadelphia collar when I felt an indescribably not-right sensation. Suddenly I noticed that when I swallowed, it was accompanied by a sharp pain in my neck. This was my newly-broken anterior fusion, shoved out of the way by my esophagus, spinal cord-bound. Well, that was no good, so I was put on bedrest while the neuro staff held a summit regarding their next move.

A beaming nurse eventually ushered a girl in a halo brace into my room, I guess to get me used to the idea. She was terrifying not only because she had a large and painful contraption drilled into her skull, but also because she appeared so brainwashed that she never said anything more helpful than "I love my halo brace. It's great." I had a very hard time buying that.

The time came, I was partially knocked out with valium and versed, and when I woke up I was completely immobile. I had a splitting headache, I felt like I needed to turn my head to relieve the pressure, and I couldn't. The feeling of tension was maddening. When I was able to look in the little tray-table mirror, I had four bolts emerging from my skull...two in the front and one on either side...held in place with a metal ring (the "halo"), which in turn was affixed to a plastic vest by four thick metal posts. Mine wasn't the type you see with the four spikes of rebar-like substance that stick into the air. Mine was much more low-profile.

The plastic vest was a problem. The plastic was a shell, front and back, which had straps over the shoulders and on the sides. Because it was bolted to everything else and jarring it would have screwed everything else up, it could never come off. That was bad enough, but it was lined with a faux-sheepskin substance that had constant contact with your skin. On the best of days, it was hot and itchy. The rest of the time, it was hot, itchy, stank, and was well-nigh unbearable. You could try to wash underneath it, but it was impossible to reach everything. Skin went on doing its renewal and shedding underneath, and when I scratched I had big gray rolls of it under my fingernails.

Wearing a bra would have been impossible. The best you could do was try and work a tube top up underneath it and hope it stayed put. And because of the posts, all clothing had to be altered. My mom became an expert at cutting slits in shirts and robes and adding snaps so that they could be rearranged around the brace.

The "pins" (that's what they call the bolts in your skull) can't get wet. Between that and the general immobility, hair-washing was a problem. We experimented with a lot of different methods, and finally figured out what amounted to about an hour-long ordeal: Vaseline was laboriously daubed around the base of each pin, then I laid down on our kitchen countertop with my head in a bedrest-basin as my mom washed my hair in the kitchen sink. Then the Vaseline that had survived the shampooing was wiped off gently and a layer of Neosporin was applied to guard against infection. The swab-with-alcohol-and-dab-on-Neosporin routine became automatic.

I had my halo brace over the winter months. That made for some really interesting experiences. When you slip and fall on the ice, it knocks the pins out of whack. All of the pin-pressures must be perfectly even, so you have to go back to the prosthetics place for an adjustment. I dreaded those adjustments, because they involved a man with a wrench driving a bolt deeper into your skull. It was very difficult not to cry, and I was a pretty stoic twelve-year-old. I did cry a few times.

I've racked my brain for a good way to describe the pain of a pin-adjustment, and I finally think I've got a pretty good comparison. Take a generous pinch of the fine, smallish hair at the corner of your forehead, get a good grip on it, and pull it as hard as you can. If you amplify that a great deal, that's exactly what it feels like. Times four, of course.

When you're out and about in a halo brace, people stare. They stare a lot. Be prepared for it to be very hurtful, especially when parents grab their children and get them the hell away from you as if you're some sort of dangerous predator. There will be people who are frankly curious and ask questions, and you should encourage that if you feel up to it. There will be many more who point, whisper, and generally treat you like a leper. Keep in mind that inside all that seemingly ignorant behavior is a grain of that couldn't happen to me, could it? It's human, albeit disappointing.

You can walk, but because your trunk is so immobile, you'll look stiff and lurching at times.

When it came time to get the brace removed, I was rarin' to go. I wanted it gone. I wanted to move my head and wash my hair like a normal person and wear clothes that didn't have to be buckled up around my ears. More than anything, I wanted to shed the involuntary sheepskin hair-shirt I'd been shackled with. So even though I knew it would be painful, I was looking forward to getting through it and getting on with my life. I cried when they brought out the wrench, but my mom cheerfully said it was going to be a "happy hurt" and that it wouldn't last forever.

It definitely hurt, I don't know how happy it actually was, but it was eventually over with and I had four holes that looked suspiciously like bullet wounds trickling blood down my face and through my hair. I was shocked to see how sharp the tips were on the bolts...I had pictured something blunt-ended. No wonder it hurt so much to screw them into my skull.

The bolt-holes eventually scabbed over and turned into flat white scars. I was moved into a Philadelphia collar for a few months, which stank (foam worn constantly against the skin in warm weather can never be expected to smell good), and which I was glad to eventually trade for a soft collar. When I finally shed collars altogether, the cool breeze on my throat felt so good.

What else can I tell you? If the bolts are in your hair, hair won't grow in the scars. If you put on weight or get puffy for any reason, the scars will stay put and become more noticeable. They don't tan, but that was never too relevant for me anyway.

As soon as I can get it down off the high shelf where my mom keeps it in her garage (for god knows what), I'll take a few pictures and add them to this post so you can get a closer look. In the meantime, I hope this helps you a little bit in your search. Feel free to leave a comment if you have any other questions.

Interesting thought from the Dermatologist's office.

2009-04-16T13:30:00.011-04:00

I had a dermatologist appointment early this morning for the fourth treatment of my hand infection (third time wasn't a charm, I guess). I've been a compulsive handwasher for years and used to scoff at the whole "hand infection" thing. I mean, who ever heard of a hand infection? Well, I did. The hard way. The skin on your hands. Duh.

Anyhow.

What you see here on the blog is pretty much how I am in everyday life. I don't see any shame in revealing to someone that I have OCD. I think it's probably an important piece of a lot of puzzles, and every little bit of information helps. So I was telling him about the handwashing, and how there probably wouldn't be a change in my habits in the forseeable future due to my having cats and a dog and working with food. And that I'd just accepted the handwashing as what I had to work with, like many other aspects of OCD (which I listed for him, but are too tedious to go into here).

And he kind of chuckled and leaned back and said, "I love you. You're so honest. Most people come in here with all kinds of lies and you have to figure it out." He used some other ego-swelling word like "insightful", although I don't remember which one, as in "you're so insightful but it's just a matter of being able to stop". Which is true, I mean about the "just being able to stop" notion.

A lot of people don't "get" that about OCD, my family included. Just stop washing your hands. Just stop pulling your hair out. Just stop checking the door. On one level I guess it is that easy, but on many many others it's not. Imagine "just stopping" whatever vice ails you, except the vice has deep, gnarled roots so embedded in your psyche that you can't remove it from one place without having it spring up in another.

Oh. Interesting thought. Right.

Apart from it being slightly odd to have your dermatologist utter the words "I love you" in the context of a clinical visit (or ever, for that matter...I wonder if my poker face was successful), I got hung up on what he said about people lying to him.

People lie? Why? What's the point of that? How do you get any useful assistance if the doctor isn't working with the right set of facts? Is there some sort of important folkway I'm missing out on?

How do people lie? No scenario I envisioned made sense. You couldn't lie about tanning; your leathery glow would give you away. The whole time he was dabbing acid on my hands (this time we're trying to give me an allergic reaction to the infection so my body will try and fight it off), I was sitting there trying to think of what people lie about at the doctor's office.

I have no cause to lie. Here I am, a fat radiated mess, have fun.

Do you lie at the doctor's office? About what? Why? Is it a guilt thing, or a fear thing?

This is going to bug me until my next treatment when I can press him for details.

An Easter post dedicated to Sara, because she's just that good.

2009-04-12T21:05:00.006-04:00

Sara's Easter Story- "Why I Hate Easter"

Her True Love's post on how you can Honor Sara's memory at Easter.

An old Candyblog entry on After-Easter Candy Sales (she shopped the after-Easter sales for hapless bunnies)***

Me, I'm not good at chocolate bunnies. My poison of choice (and this has to be ultra-sparingly due to the thrice-bedamned Decadron) is the Strawberry Cream Egg. I usually allow myself one a year, but if I pass a clearance bin and they're 30 cents apiece...well, I twist the situation's arm until it assures me that it would be a tragic waste if I didn't rescue at least one. A few years back Russell Stover played bad mindgames with me by beginning to offer heart-shaped strawberry creams for Valentine's.

Those and Fannie May Trinidads, those delectable little globs of chocolate ganache coated in white chocolate and coconut crunchies. The things I could do to a box of those. Bad things. It's probably good that where I now live they're far out of my reach.

Happy Easter.

*** I need to clarify, the Candyblog isn't Sara's. The post-Easter candy hunt was just a subject dear to her, lol :)

More Decadron whining.

2009-04-11T17:31:00.006-04:00

It should be a beautiful day. It's the kind of spring day that's cloudless and sunny, but with a cool breeze that scatters the cherry blossoms like a cheesy anime cliche. I was in my element, under a cherry tree that was a riot of gorgeous pink blooms. Petals were falling all around me. I was somewhat happy.

And someone took a video of me and I look like Danny DeVito playing the friggin' Penguin.

I need to be on Decadron. I realize this. But I hate what it does to me. My face is puffy and pasty. My upper arms and chest looked huge, my waist is gone, my backside looks like the nether end of a hamster. Looking at the pictures...at my face so puffy that my ordinarily-not-too-noticeable halo brace scars show up as large dents...just about made me cry. I thought my shape was ugly after I had the girls...that was nothing.

I know I don't weigh as much as I look like I weigh. It's something in how the puffiness is distributed. I just look really, really bad. Sickly. People say that Decadron makes them fat by giving them a bigger appetite, but my appetite is unchanged, and I cut almost all sugar and refined starches out of my diet. I feel overheated and oily and gross. I suppose I could whine about this to my oncologist in a couple of weeks, tack it onto the list.

Self-loathing and depression- great way to ruin a beautiful spring day.

Shellfish Allergy options at PF Chang's (public service announcement)

2009-04-10T09:57:00.003-04:00

PF Chang's is kind of a guilty pleasure for me. A lot of people trash-talk it for being a chain, but I kind of like it. The one problem is (and this goes for just about every Asian restaurant I visit), it's a minefield where food allergies are concerned. Imagine going to an Asian restaurant and having to navigate that menu while allergic to fish and shellfish and honey. Say you need a gluten-free meal and they hand you a separate menu. Say you have a honey allergy and waiters roll their eyes. At least, I can feel them rolling their eyes.

We wound up with a really, really nice waiter yesterday who was very helpful with my whole allergy situation. He departed and returned with a handy printout of everything on the menu that did not contain a shellfish-based sauce. I was very pleased with this, never having had a helpful little list before, and thought I'd share it with you.

So this printout, as the waiter said, was everything on the menu at PF Chang's that does not contain shellfish.

The honey was trickier. "You're going to think I'm crazy," the waiter said, "But the honey chicken doesn't have honey in it. It's a sauce that tastes like honey."

I tried to wrap my head around that for a moment, but I live in fear of my sinister little spring-loaded epi-pen and decided not to chance it. I got sweet and sour chicken, brown rice, and a martini instead.

Thank you, PF Chang's, for being so accommodating.

A year later.

2009-04-02T10:27:00.005-04:00

About a year ago, on a spring day not unlike today, I was happily, heavily pregnant with confirmed-healthy twin girls. They were kicking vigorously as I waddled hastily around the house, pulling on my giant cotton maternity clothes, getting myself presentable for a trip to the hardware store. Our garbage disposal had given up the ghost, the landlord had ceased to be of assistance and we were on our way to buy a replacement.

And as I stood in front of our dresser, straightening my hair, under no strain whatsoever, my water broke in a sickening warm gush and the wonderful happy motherhood-dream went straight to hell.

I stood in disbelief, wondering if I was processing the information correctly. Then I began shouting for Justin to come and take me to the hospital. He panicked because he hadn't been to the hospital I used for maternity needs and didn't know how to get there. So we called my parents to take us and stood in the driveway waiting, clammy in my soaked maternity leggings in the fog and early-spring chill, shaking because we knew what this was going to mean.

After a week of emergency antibiotics and fanatically-observed strict bedrest, Cécile was born. Her head was stuck, she kicked and struggled inside me, and feeling her struggle, knowing that she would be born only to die, nearly drove me insane. Almost exactly a month after that, Madeleine was born. Both were too premature to live; Madeleine fell just one week short of the official viability date. As it was, we had no choice but to hold our little daughters and watch them die.

I missed Cécile's funeral because of the bedrest, but I was there to see them add Maddie's shoebox-sized pink coffin to the tiny grave. I fought to have the girls buried together. I cried at the gravesite and told them how sorry I was I couldn't save them, that I had tried so very hard.

It's a profound sense of unjustness, bitterness and utter failure that no one can possibly understand unless they've lost an infant or a small child. Miscarriages are hideous and horrible, but it's not the same as a miscarriage. There is nothing else in the world to approximate holding your own warm, squirming, tiny child in your arms and watching helplessly as the little pink mouth gasps for air and the little arms and legs slowly stop moving. There is nothing like feeling your warm, living baby slowly turn cold.

There's something terribly profane about being in the middle of a bustling perinatal unit, amid all the tiny lifesaving equipment, and knowing that it will not be used...not even be reached for...to save your own child's life. Having to cradle your own infant and slowly watch her die is the sort of thing that makes you want to die yourself, to remove yourself from a world where this sort of thing is permissible.

Life goes on whether you want it to or not. People are tender, sad and solicitous for a while. Then they go on to other things and encourage you to move on, in part because being so tender and solicitous is effort better expended elsewhere. And you try to move on. For the first few days, weeks, months, there is no moving on. Long after your children's death stops being novel to others, you bleed and make tombstone payments and cry as you wire-tie little pacifiers to pink floral arrangements. Your healing muscles spasm and it exactly mimics the feeling of baby-kicks. Sometimes you feel a flutter and your heart swells, only to sink again when you remember the new emptiness inside.

Friends, relatives get pregnant. The world is a celebration of birth and living babies. And you can't not be happy for them just because of the horrible thing that's happened to you and your own children. It would be wrong; of course they deserve happiness. You always feel as if there is a standard of I'm-so-happy-for-you that must be maintained lest someone think you quite the bitch for not giving them their due. I've wrapped a great many pastel shower gifts since losing the girls; picked out a great many teeny-tiny things that I would have gotten for the girls had they lived. You can't not do it.

Even Justin frowns awkwardly now when something triggers me and I start weeping. Oh god, are we still on this? We have different coping mechanisms, Justin and I. Periodically he tries to get me to adopt some of his, with tragic results. He relies on statistics, as in, "This has happened to a lot of people." The fact that pain and wrongness are so widespread is no comfort to me.

He periodically makes me feel guilty if I mention that a friend or relative is pregnant, because he thinks I'm saying it spitefully. I'm not. I don't feel vengeful at all. The old "why couldn't it have happened to you instead of me?" sentiment never really kicked in for me. I don't resent anyone else's happiness. I just feel sad and empty without my own.

I walk past colorful Easter dresses in the department store...sometimes it's hard to avoid them...and wonder what size the girls would have taken if they'd lived. I reach out to touch the little ruffles and soft fabrics, feeling as if I'm invading the babywear department somehow, as if I have no right to be there. I feel the slick whiteness of patent-leather maryjanes. I admire little bonnets and hairbows. I smile at babies in strollers. When they bobble upright and reach chubby little fingers toward me, I wave back and fade into the woodwork.

I go to the craft store and pick up the bolt of rainbow gossamer I would have used as a canopy over their crib. Then I slowly put it down and go to the silk florals to choose flowers for the grave. Pale pink bleaches out, you know. I learned that. If you leave it on a grave in full sun for a month in the summer, it'll be tattered and white when you return. I learned to buy gaudy hot pinks for their staying power, the kind with the rubberized petals that won't fray in the wind.

I've scrabbled around the grave on my knees picking up the windblown remnants of a weedwhacked floral arrangement. I've tried to fit brittle shards of plastic bouquet-cups back together and shed tears of rage over careless groundskeepers who not only don't care if they step on my daughters' little bodies but are also callous enough to haphazardly scatter my efforts, the only thing in this world I can do to take care of my little girls, to the wind.

A kind Etsy seller suggested a grave band, an elaborately-decorated elastic band that looks a bit like a giant garter and fits over the tombstone. We'll see if that works. I'm hoping it will. I'm going to try to save up money this year to have the girls' porcelain portraits added to the gravestone. I feel as if it would help people understand what this is, what sadness, this hope that died before its time and is tucked away in the only safe place I could find for it. When I had the gravestone made I asked them to leave room for the pictures. Once they're added, I'll feel much better.

I was outside today, and I suddenly noticed that the tulip poplars and ornamental pears are blooming. I missed them last year. When my water broke, everything was still chilly and tightly furled. After almost a month in the hospital and my eventual defeat, I was wheeled out of the maternity hospital, utterly empty-handed, into a world that had already entered the first flush of summer. All of my beloved spring blossoms were gone. I had completely missed springtime.

There's an analogy in there somewhere.

To Sara.

2009-03-30T19:29:00.005-04:00

My favorite post of hers, because it was so illustrative of her talent for laying it all out there.

A time she made me laugh.

A time she made me cry.

A time she made me happy.

A time I made her happy.

I'll miss you, Sara. And now I'm going for an unrepentant ride on my adult trike, as you've done so many times.

...her True Love asks that no one try and contact him at this time; I'll respect it and ask everyone else if they'd please do the same.

Fatter living through Decadron!

2009-03-26T12:05:00.005-04:00

(credit to LILEKS.com ---hilarious and well worth checking out, btw--- for the image)

I know for a fact that I now weigh less than I did when I moved to Ohio in 2004. I know this because my doctors insist upon weighing me at every visit and I see my weight several times a month, whether I want to or not. I try to offset the inevitable shame by making wild guesses as to my current weight, shooting for 200 to 300 lbs over so that the reality doesn't look so bad. But it doesn't really fool anyone. Tears of a clown, and so forth.

Genetically, I'm predestined to be short and generally round, and I'm
okay with it. I have the same short-torso, wide-hip figure that Alex Borstein does. I've gone through two periods of time in which I ate barely anything (a day's food would be a jello cup, chicken broth and half a sandwich) for months and was still "overweight" by the BMI
charts. My grandmothers are/were short and round. My maternal great-grandmother was extremely short and round. Can't fight the recipe.

I'm on Decadron on and off for various cancer and adrenal problems, and it makes my body look for excuses to be fat. I can't process sugar worth a damn when I'm on it, so I have to pretty much treat myself as if I'm diabetic. I can manage that. With the exception of my birthday week in which I had a couple of slices of cake, I've been strict with intake. I eat lean proteins, whole grains, lots of fruits and veggies. I cut out alcohol. And I remain short and round. Thanks, Decadron!

Anyway, what really pisses me off is that I still have some clothing from when I moved here, and it still fits. But when I go for newer clothing in the same size, it doesn't. I just bought a sundress that was only available in 2 sizes above my normal one. I got it, because I thought it'd allow for shrinkage and be comfortably loose. Yeah, well, it's snug.

Most days, I walk Chloe for at least half an hour. I ride my trike all over the place. Once a week or so, Justin and I leash Chloe up and take a really long walk, an hour and a half or thereabouts. It's not like I sit around here like a lump. It's not like I'm pausing between the Cheez-ball course and the S'more course to complain.

Is there some reason for the women's clothing industry to steadily make the sizes smaller and smaller? I remember when a large was 12-14, an extra-large was 16-18, a 2x was 20-22, a 3x was 24-26, and so on. But I picked up a pair of pants in the store the other day and it said "2X (18-20)". Are they trying to mess with our minds? Impress upon us that we're fatter than we thought we were? Fantastic. I needed that.

I'm still bitter from when I ordered women's 2x shirts from Customized Girl, looking forward to just a tiny bit of roominess, and the things fit like a second skin. I've since converted to men's 2x, which fit me like potato sacks and don't do anything at all for a too-ample postpartum bosom, but at least they're comfortable.

It's like when nature needs a break from screwing you over, something else is ready and willing to step in. Heh.

Made it another year, and yay! my first "Where Do My Books Go" response!

2009-03-19T21:05:00.003-04:00

Today I turned 32. The age thing doesn't bother me at all, except for the fecundity aspect. Rather, I'm proud to have made it an additional 30 years past my original expiration date . It feels a bit like hanging onto the edge of a cliff with my fingernails, sometimes, but I get by.

I was also very excited to see my first returned note from the "Where Do My Books Go?" project, in which I numbered books I gave to charity and asked people to write in with updates:

Hello, Book #3 in your project "Herp Help" was bought at a Dayton, Ohio Goodwill store...... I listed it on Ebay and it was sold to a customer in Berwick Victoria, Australia. It's currently in the mail making its way to the Land Down Under.. Cheers, Ernie

...isn't that cool? Not even a month from when I dropped it off, my little book on reptile health is on its way to the other side of the world :)

Hey, have a piece of cake on me!

How? Why?

2009-03-18T22:16:00.005-04:00

This caught my eye as I was looking through headlines. And at first glance, yeah, enraging, horrible, etc.

Except a couple of things bothered me about this. Did you hear the "in theory" they slipped in there? Do they not have any record of it happening in practice? I liked the token distance shots of McMansions and the Mercedes hood ornaments, and the whole "buck stops here" in City Council thing sounded nice too, but "in theory"?

If you were walking to your car in a Job and Family Services parking lot and some reporter came up to you and said in theory that people with $1,000,000 in the bank could get food stamps, what would you say? Think fast, the cameras are rolling.

For the record, I never qualified for food stamps. There was a time I had absolutely zero income (waiting for SSDI payments to kick in) and had been determined officially to be completely, irrevocably disabled, with new medical bills piling in by the day, and I still didn't qualify. Because I was "technically" living with my parents, who were "technically" able to provide me with food, even though I was a disabled adult.

So the whole thing mystifies me a bit.

The Unfortunate Case of Jade Goody

2009-03-16T16:26:00.006-04:00

I had a lengthy debate with myself as to whether I should write anything at all about Jade Goody. I didn't want to get sucked into the toxic cloud of voyeurism that encompasses her whole situation. At the same time, I'm so irritated at the phenomenon of the "celebrity deathwatch", and this is such a classic example of it, that I might as well say my piece and let people shoot it or salute it.

A lot of Americans don't know who she is. Back in 2002, she made an appearance on the British version of Big Brother, where she developed a somewhat odious persona and attracted the ridicule of the tabloids. She became one of those people who is famous simply for being famous, making the rounds of popular TV shows, writing books, starring in workout videos and coming out with a signature fragrance.

She went on to further develop the odious personality in Celebrity Big Brother, in which she laid down some really appalling racism towards an Indian housemate, and was castigated publicly for it. Somehow this was parlayed to an appearance on the Indian version of Big Brother. It was there, and not too far into the series, that she received one of those dreaded "cancer calls" from her doctor's office. True to her very public life, the call (with resultant despair and tears) was videotaped for mass consumption.

Long story shortened, the cancer spread, as cancer is irritatingly wont to do sometimes, and a really sickening phenomenon developed. The tabloids, having scented some wounded game, won't let up. First she was "the ailing Jade Goody", the "brave cancer patient" Jade Goody, the "cancer-riddled star". Then, when the cancer was declared terminal (stop the presses!) she became "the terminal" Jade Goody, "the dying" Jade Goody. She is at the center of a very prolonged and public Celebrity Deathwatch, in which an individual's illness and eventual death are sources of great interest and excitement to a public greedy for vicarious detail.

She has played into this somewhat; she claims it's to help ensure that her sons will be well-cared-for when she's gone. Heaven, earth and court orders were moved for her to have a really lavish wedding at the end of February, complete with performances by girl groups and special permission for her fiance (who was being court-monitored after an assault conviction) to extend his curfew. Meanwhile, the tabloids were filled with photos of bridesmaids in bald caps and Jade being shuttled hither and thither in a wheelchair, sucking on a lollipop of pain meds.
With only months to live, presumably. Then weeks to live. Then days to live. Hours. What, are they keeping advent calendars or something?

Courting the press or not, this is a human being who is facing imminent death, which must be the most terrifying thing anyone could ever deal with. It would have to feel so lonely and frightening, in spite of the frenzy around her. And part of the reason that I'm so angry about the deathwatch mentality is that I believe people really do lose sight of the fact that this is a real person, a person who is dying, a person who cannot move on to the next interesting thing the way we can.

I recently ran afoul of a forum poster who shared what she'd recently learned of Jade Goody's condition. When I didn't display the proper reaction (which I took to be a mix of pity and a desire to learn specific details of the suffering), the person was angry with me and let me know that Jade Goody had days, if not hours left. This, in turn, got me angry. I was already disgusted that the public nature of this (up to and including the tabloid press's constant assertion that she only has days, no, hours, no, minutes to live) has robbed this woman of any dignity in death.

Angrily, I wrote to Jeanne, who is gracious enough to be an excellent sounding-board for my railings:

" I can't stand it when a public figure is sick and/or dying, and/or dead, and people enter this mad, elbow-jabbing scrum to be the first to announce it to their peers.... Oh, (is that) exciting? Wow, she's going to die in a matter of days, if not hours! Her death is coming up really fast, wow! Soon we'll hear on the news that she's dead and then we'll need someone to run to a forum and be the first to tell everyone!

Yes, and then after they have the satisfaction of being the first to let everyone know, they can go on about their business and completely forget Jade Goody... When you break it down is just one more (albeit glaringly public) tragic early-in-life cancer death in this hard world.

There must be some primal element to the excitement that is just human, but I'm really unforgiving of humanity on this front. When all is said and done, and the excitement of telling everyone is over with, Jade Goody still will have had to face death...the most terrifying transition a human will ever have to experience, and in the glare of the public eye...and will be gone forever. How dare (someone) encroach upon that with made-up pity."

...I was angry. The lady and I have since reconciled somewhat. She was unaware that my input was coming from a cancer patient's standpoint.

Whether Jade Goody gave herself to the public or not, this is someone's life. The last moments of a dying woman are not entertainment. And if, in the end, she regrets (or regretted) it, she doesn't get a do-over.

Supplemental Reading: The Saddest Reality Show of All

Unseasonably warm, and I can deal with that.

2009-03-15T18:14:00.003-04:00

Someone else is getting nailed with bad weather, which has pushed some wonderful warm, soft sunniness off onto us. I'm sure it won't last...we'll be nailed with something so someone else can get out and enjoy themselves. That's how it always works.

Chloe seems to be entering a very difficult stage. A few days ago, she yanked me as I was turning to lock the house door behind us, and she proceeded to drag me quite some distance to my parents' house. It looked very much like that dogfood commercial where someone is being dragged through a park, down a flight of stairs, and so on. We solved that problem by getting her a Gentle Leader halter, which worked better than anyone had anticipated. She seems to believe she's a horse, so might as well lead her like one. From the first time it was snapped into place, she went from bucking and pulling to quietly trotting beside me.

So I thought we were making progress, and then she got away from Justin today. She thought it great fun that Daddy was chasing her down the street and ran big, careless circles through sidewalks, yards and the street itself, deliberately coming within 5 feet of his outstretched hand before darting off. She was headed toward my parents', where she knows she will be coddled and fed cheese. On one hand, it's very good that when she runs we know where she's headed. On the other, we can't let her get away with this.

We also got her a large enclosure for the backyard. That hasn't gone as well as anticipated...the combination lock froze and stopped working, she's been digging holes, and she barks her head off when a neighbor dog makes an appearance. Poodles, even Standards, are often flightier dogs and we'll just have to work with that.

I took her out for a walk this afternoon and soaked up a little sunlight. She got a compliment on how well she was walking (if only the lady had seen her this morning!). I had a nervous moment when I saw a gentleman and his toddler out between the sidewalk and the street. We had just crossed, I didn't see them and it was too late to cross back. I got between Chloe and them and tried to walk her calmly past.

She almost made it, but her excitement at seeing the little girl was too much and she started bucking. I was kicking myself for not just looking weird and crossing the street again, and I just spoke lowly to Chloe and slipped a hand down around the halter. We got past, I didn't let go of the halter and she trotted beside me. I've replayed it in my mind several times since and I really should have crossed the street again, the hell with appearances. I'll remember for next time.

The worst part was that it was fairly obvious that they didn't speak English (lots of Honda employees, visiting from Japan, rent temporary homes on our street) and I never could have explained properly that Chloe was just an excited puppy.

*sigh*

Anyway.

It looks as if we have a couple more days of nice weather, so I'm sure we'll be out again.

Let's Cure Cancer with Prerecorded Music!

2009-03-13T15:34:00.002-04:00

*sad shake of the head* "There are no Z-rays."

http://www.archive.org/details/fda_quackery_psa

I really wanted to embed the video itself, but Blogger didn't like that.

Ever make up your own official seal?

2009-03-13T07:20:00.003-04:00

I was playing with a fun seal-generator the other day and came up with an official seal for myself. There were a lot of directions I could've gone, but this seems the most appropriate to what shows up here.

On the top it says, "Meet each misfortune as it comes, to the point of absurdity." The bottom says, "Among other things". I rotated the clip art to look like one of my neverending MRIs.

Have fun, I'd love to see what you come up with.

Seal Generator

Latin Phrase Generator if your Latin's a little rusty

...and on the lighter side, an ode to my couch:

2009-03-09T20:03:00.008-04:00

Oh, little loveseat with the spotty corduroy upholstery and the thick foam cushions. It breaks my heart to part with you. :(

You arrived as part of a three-piece set to decorate my parents' new suburban Wisconsin living room almost 25 years ago. I don't remember the exact Milwaukee furniture-superstore trip to pick you out because they were all boring, and instead of paying attention to couches I was probably fighting with my brother or poking at the fake cardboard TVs and stereos in the displays. You were the Mama Bear of the set; there was a bigger version of you with a fold-out bed, which always went against the far wall under some piece of 80s-era framed art, and a little laminate coffee table whose glass inserts clanked alarmingly when we kids bumped against it.

At my tenth birthday party, you were there. A row of little girls perched on you as I opened gifts before the sleepover. I still have the photo. Two of the girls had a fight; one girl barricaded herself in my bedroom while the other spread out her sleeping bag on your plush cushions and soaked you with her tears.

When I had a headache or didn't feel well and my bed didn't feel right, you comforted me. I sank into your soft cushions and felt like you were made just for someone my height...one armrest fit perfectly under my head, the other propped up my feet. They still do . I knew I could curl up on you and feel better.

When I was twelve, you spent a summer in storage while we looked for a new house. And when we got that new house, in Indiana this time, you made yourself right at home in the corner of the new living room, next to my great-aunt's heirloom end table. The laminate coffee table had finally gone the way of all laminate coffee tables with glass inserts of poor integrity, but you and your matching sofabed remained.

When I came home from Awards Night in seventh grade, I posed on you with my Science Award. I had frizzy hair, big tortoiseshell glasses and looked like the kind of kid who would get a Science Award.

I got dumped on my 21^st birthday and cried on your plushy tan shoulder all day. Then I drank an entire bottle of Corbett Canyon my dad gave me.

When I was 24, my parents moved again and the set was split up. The big sofabed went to my brother's apartment and you went to mine. I was in love with the idea of having my own apartment and bought you trendy little throw pillows. I surrounded you with bookcases and curled up on you when I got home from work. I defended you against my ex, who banged his shins on you, cursed your boxy construction, and demanded I throw you in a dumpster. You lasted longer than he did.

You came with me to Ohio and made several more moves. Somewhere in one of the moves, you lost your little plastic baggie of legs, and this made you sit much lower than usual. But my loyalty remained strong. I put you in one bedroom, then another, then tried setting you at different angles in the living room. But we never found just the right place, and more often than not you ended up as a catch-all, holding half-unpacked suitcases and piles of mail. You deserve better than that.

I had plans to reinstate you to your former glory, possibly usurping a rigid and ugly sofabed that I'd never gotten used to. But the man of the house appreciates the length of the sofabed, in the same way I appreciate your own abbreviated length, and will not part with it. I tried several times.

Still, things were looking promising. I thought I'd discreetly tuck you under our living room window and read on you. It worked until we got a dog. One day, during a couple of minutes' unsupervised time leashed to the front door, she got to you and tore open one of your
seams.

I returned to find your beautiful pale-green stuffing strewn all over the living room. I tended to your wounds and sutured the tear, but she got to it again. I could sew it again and make it
look all right, but the dog has obviously made it a personal mission to destroy you. We need to get you away from her.

So, poor wonderful ultra-cushy tan corduroy loveseat that sits a little low due to lack of legs and has some dog-assisted ventilation, I guess this is goodbye. Tonight the man of the house and I are going to haul you to the curb. I called for Special Trash Pickup, but I hope someone adopts you before they come. Because you are soft, so very comfortable, you've been there for me for a huge part of my life, and you deserve a respectable retirement.

I'm going to sit in the house and try not to cast longing looks toward the curb. Your space is already occupied by a cat tree and three surly lardbutted cats who are staring disrespectfully at you. I want, very badly, to believe that you will go to a good home.

ps-
when the ugly sofabed goes, it's not getting a eulogy.

Violet, my paternal grandmother.

2009-02-27T13:44:00.013-05:00

I understand the cathartic effect of memorial posts, I really do. Sometimes you have a chance to say what you mean to a person and sometimes you don't; given a choice, I'd prefer not to wait, since you never know which encounter will be the last one.

My paternal grandmother has experienced a slow but irreversible decline in health over the past two years and is in ICU for what looks to be the last time. There's talk of removing her from life support later today.

I'm the fourth grandchild and the oldest granddaughter in a vast sea of freckled faces. She gave us those freckled faces, the red hair. I haven't seen her since Thanksgiving, although I don't think she's recognized me since I talked to her at my grandparents' 60th anniversary party. Can you imagine being married for 60 years?

Her favorite thing at family gatherings was to look around and do a head-count...which children had made it in, which grandchildren and which spouses, how many of her great-grandchildren were there. Even frail and on oxygen, she could spot in a second if someone was missing. She was thin and terribly ill and still wanted all of the family gatherings to be in her dining room so that she could make sure everyone was there. The dining room table is at least 20 feet long, a slapdash product of multi-level extensions and repurposed chairs, and I think the count was 45 people at Christmas trying to fit around it.

In healthier days, she would tap around the kitchen in her little size 7 heels, keeping an eye on the food, zipping upstairs to take the ancient curlers (held with equally ancient pink plastic pins) out of her hair before we ate. She had signature dishes: mashed potatoes with this incredible gravy, the roux made by quickly stirring flour into melting bacon fat; wonderful potato salad, always served in a Fenton cut-glass bowl with slices of hard-boiled egg decorating the top; home-canned green beans whose likes will never be seen again.

Her manner was always busy and flustered, and when she did sit down it was breathlessly, with an expression of wide-eyed anticipation... as if she were saying, "Well!" The activity kept her going; she was the pin about which the entire family revolved. She was the tiny, kinetic counterpoint to my grandfather's quiet and stoic authority.

Her fluttery nature was endearing. She had a unique fashion sense; it wasn't uncommon to see her in a pair of burgundy polyester slacks with a forest-green blouse and vivid turquoise ruffled jacket, set off by a pair of white patent-leather shoes and a necklace of large white plastic beads. She had chiffon scarves in every color to protect against ear infections on windy days.

Home decor came together in unexpected ways; a blue clock shaped like a toilet seat that we'd bought to match her bathroom has been hanging in her green kitchen for almost 20 years. Meanwhile, the bathroom was festooned with bright red silk poinsettias thumbtacked to the powder-blue walls.

The house was devoted to the ranks of children, grandchildren and great-grandchildren who had been brought up there. The 50s-era coffee table in the living room held crayons and scraps of paper for generations of us. When two of my younger cousins helped her "wallpaper" the dining room by sticking in the border with red, yellow and green pushpins 15 years ago, it stayed that way. 30 years' worth of school pictures decorated her refrigerator door from top to bottom, held in place by countless Bible-school magnet projects. The cupboards were full of after-school snacks, the freezer was stuffed with IGA ice cream and popsicles, and all visitors were presented with blue cut-glass goblets of ice-diluted RC.

It always seemed as if time had stood still at her house. They tried a computer in the early 90s, but it didn't take, and I believe their TV might be antenna still. It always smelled of woodstove smoke and gravy there, years before there was a Cracker Barrel in existence to duplicate it. You always knew the Blue Willow gravy boat would be there, and the Fenton dish of potato salad, the very-very-sweet tea and the glass dish of dinner rolls in their 70's cozy. They had a plastic log in their fireplace that crackled with fake embers so that the kids wouldn't get burned on a real one. At Christmas she always put out the same mantel village, with the awful white plastic church and its red-and-yellow "stained glass" stickers, and two caroler-dolls whose heads motored in alarming lolls as they waved electric candles around.

With my grandmother dies that era. My aunts work; my female cousins are busy with families of their own; we live too far away. The family gathering of old has become more of a potluck over the years, more effort-intensive to protect her from exertion. We knew it was coming to an end and made sure that the anniversary party was everything she wanted; that Thanksgiving and Christmas were everything she needed. The family was in the process of planning another party when she went into the hospital; now we doubt she'll ever see it. Next Friday, March 6th, will be her 79th birthday.

She's not conscious now and can't look around to see who is standing at her bedside. I know that as the family takes their time in the room they're mourning her, that facet of her as a wife, mother or grandmother that was visible to them and made them special to each other, that facet that has been dulling over time and is now fading away. And they're mourning the life they knew, which will die with her. I know they're thinking of gravy, of ancient dusty crayon papers in the corners of the coffee-table drawer, of toilet clocks and pink plastic curler-pins and the tap of patent-leather heels and Nanny, or Mom, or Violet.

Edit: She died at 8 this evening.

Not the sunny-happy day I'd quite envisioned...

2009-02-26T16:40:00.004-05:00

Today was supposed to be the warmest day so far this month. Because I assumed that warm also meant dry and sunny, I made plans to take Chloe on a long walk. I became so excited at the prospect of this long, pleasant walk that I took her for a preview walk yesterday: an hour-and-a-half circuit that left her limping eagerly toward her crate and me with blisters the size of dimes on my feet. It's like walking on marbles.

Just as well, because when the day actually dawned I found I'd forgotten that it can be warm and also overcast and gloomy. Instead of the planned walk, I passed out on the couch watching Kairo with a warmed-over cup of tea beside me and a box of cereal on my stomach.

I woke up with a jolt during the tense scene where they've cut out all ambient sound and the ghost is whispering "help me" like it's in the room with you. I came off the couch backwards like Hunter S. Thompson on amyl poppers, one hand knocking the mug of tea sideways, and sending a hail of Frosted Mini-Wheats pattering all over the living room.

Chloe looked up from her blanket-shredding project and regarded me mildly before tearing off another chunk of Vellux and adding it to the pile outside her crate.

It's been a gloomy, ominous sort of day. I woke up from a nightmare about a brain tumor recurrence. My grandmother, who has been in extremely poor health for over two years now, has just had another health crisis. Add that to the late-winter gloom and it's a decent throw-together for depression. Hence the inactivity.

Chloe is turning out to be a beauty, though...a very big beauty. Here she is, raring to go on our walk yesterday.

Greetings from Cancerville, where it's Ash Wednesday all year long.

2009-02-24T20:20:00.009-05:00

"Have you gone to get your ashes yet?"

This was the question invariably posed to me on a dark Wednesday morning near the tail end of winter. I worked many years in a Catholic hospital, was good friends with many nuns (ashes would inevitably smear on the starched linen headbands of their habits and mark them in fuzzy gray piety for the rest of the day), and was usually queued up in Chapel early to make those nuns happy.

It was a quick procedure: you lined up, the priest smudged your forehead with ashes and muttered the "ashes to ashes, dust to dust" standby in English or Latin. I always shuddered at the gritty dryness. That done, you murmur "amen", go about your business, and discreetly wipe or wash off the ashes later lest someone think you're some sort of zealot. The purpose of it all is to impress upon you impending mortality and the fragile nature of life.

With all due respect to the Church, I've found a way to deliver the same message with a much bigger wallop.

Take a cancer patient, strap them to a diagnostic table (MRI's my personal choice, but I'm not picky), and tell them you're looking for advancing disease. Leave them in the coffinlike tube for 45 minutes to 4 hours and let them think about that. Even a 15 minute bone scan is plenty of time, I assure you.

And that's why I always shuddered more from the dry feel of the ashes giving me cold chills (I'm bad with dry paper towels and chalk dust, too), than the spiritual implications. Nothing makes me feel colder, more mortal and more alone than some quality time strapped to a table as my diagnosticians stand safely behind a barrier fifteen feet away. Yep, that's a pretty bad place, and instead of plopping me lightly at the mortality conclusion as the ashes do, it spikes me into the endzone full-force and does a bawdy little dance.

And that's why, instead of standing in line in a chapel for my ashes once a year at the hands of a priest, I decided I was just as well-served in receiving them six to eight times a year, in dim and chilly Radiology suites, at the hands of my many caregivers.

The horrors of the home stretch.

2009-02-11T15:36:00.005-05:00

I have an almost pathological terror of a doctor's office phenomenon I call the "home stretch".
I don't know why I call it that, because that's not particularly apt. It's just what popped into my head one day and has been returning ever since.

The "home stretch" is when you're finished with the medical assistant, nurse, physician assistant or whoever sees you immediately before your doctor. You've submitted to the vitals, you've answered the questions, and now you're sitting on crackly substrate and waiting for that moment of truth.

You may or may not be feeling some extra vulnerability without your clothes. Your ears are trained on the rustlings and movements outside the room. Footsteps approaching? No, going past. The staccato tap of high heels...must be one of the ladies from the front desk. Muffled voices from next door. Laughter.

The hum of fear cranks up a few notches when footsteps approach. You hear the snick of an x-ray fitted into a lightbox. Is it yours? Several snicks in quick succession... good. A snick and a long pause is bad. A snick, a long pause, and your doctor's voice on the phone asking to speak to another physician of yours is even worse.

The hollow, rattling plastic sound of a chart being pulled out of a wall bin. Is it close? Is it yours? The doctor whistles cheerfully as the paper shuffles. That's good. The whistle trails to a slow stop. That's very bad. If the whistle abruptly switches to Chopin's funeral march, that's worse still.

And then there's the inappropriate conversation outside the door, facilitated by the misguided notion that the patient is encapsulated in the exam room and doesn't truly exist until the caregiver opens the door. At my first visit to the obstetrician after the girls died, I was kindly directed to a side room where I wouldn't be exposed to too many trappings of pregnancy and happy motherhood. I heard my doctor approaching with a woman. I'm not sure who the woman was. I suspect it was the other physician who helped me try so hard to keep Madeleine, but I hope it wasn't.

My obstetrician got to the door and said, "Do you remember Amorette?". Then I heard the female voice say in response, "No, I don't want to see her." For a minute or so, I got to sit there and wonder why it was this person decidedly did not want to see me. It did not do wonders for my self-esteem. No mention was made of it during the appointment.

I hate and dread that anticipation leading up to the swift double-knock before the physician enters. I hate sitting there, vulnerable and afraid, trying to retain some control. Once the doctor enters, I can sense the tone of their take on my situation and adjust accordingly. It's not a relief, necessarily, but it doesn't feel like floundering in the dark anymore.

I wish there was some way around those few awful moments.

Because I doubt that Wellcare reads this blog...

2009-02-09T11:30:00.006-05:00

...it was probably because of the angry, underlined, exclamation-ornamented scrawl I wrote in the memo of my last premium payment to them. You know, the premium that went up 558% at the start of the new year?

I got a letter from Wellcare on Friday.

In October, you received a letter from us informing you that your premium costs in your WellCare Signature Plan would increase beginning January 1, 2009.

Uh, no I didn't. I looked back over my records and I got two "summaries" of drugs they'd paid for, but I don't have any sort of letter. I don't know if that was them, the post office or me, but I don't have a letter.

However, you can enjoy the same benefits under our WellCare Classic Plan at a much lower premium. So, to reduce your costs, WellCare is going to enroll you in the WellCare Classic Plan, unless you make a different choice by February 20, 2009.

(their bold font, not mine)

*sigh*

Never Meet Your Heroes

2009-02-06T15:51:00.003-05:00

When I was very young, I desperately wanted to be a marine biologist. I had a copy of Killers of the Deep that I read until the pages fell out, then I taped them back in and kept on reading. I memorized biology books and my VHS copy of National Geographic's special on sharks was one of my dearest possessions.

It hadn't yet clicked that due to my physical problems, I'd never be able to scuba dive, and a reluctant landlubber didn't stand much of a chance in the world of marine biology.

I idolized Eugenie Clark, the famous female marine biologist. Somehow I got a copy of her autobiography, Lady With a Spear, and memorized that too. My grandmother wrote Dr. Clark and asked her to autograph it for me. Not only did she inscribe it ("All my best to Amie Bleu, hoping to meet you one day"), but she also sent a great glossy of herself posing with a giant pair of shark jaws and all sorts of PR material. She said that I could feel free to write her anytime I had a question about marine biology. She even colored the eye of the shark in her letterhead with a green felt-tip pen, which thrilled me to no end.

I literally fretted for years about what I could possibly write that would be worthy of this woman's time. Finally, I found a shell fragment and sent it to her asking if she could ID it. I reminded her who I was, the little girl for whom she'd autographed the book. She actually wrote me back fairly quickly, ID'd the shell and updated me on her latest projects. The shark on her letterhead had its eye colored in with a green felt-tip pen. I was simultaneously in awe and completely charmed by the fact that she remembered me. And she'd colored in the eye again! Oh, warm-fuzzies of implied kinship!

She told me in her letter that I could call her and maybe someday come and sit in on a class. To sit in on a college class taught by your idol...wow, that was more than an elementary-school nerd could take. It took a long time for me to work up the courage, but I finally did try calling. In my naive kid-brain, I thought for sure that a secretary would answer and take my message, then somehow at a later time I would actually get to speak with her. I was still nervous, but in my head I was going to speak to a third party and just set the wheels in motion. I dialed the number on her letter, her office at the University of Maryland.

Imagine my horror when Eugenie Clark herself picked up on the first ring and said, in an irritated voice, "Yes, hello, what?"

I knew the moment I heard her voice that it was her. She has a one-of-a-kind sort of voice. I also was flooded with the sickening feeling that calling her had been a terrible, terrible mistake. It hadn't gone the way I'd planned at all. She was obviously busy, annoyed at the intrusion. And I couldn't blame her for that...she had no way to know who was calling. Suddenly I didn't know what to say. I stammered something about being the little girl whose book she autographed and who sent her the shell and....uh, uh....uh....

She cut me off. "Is this a student? What is your e-mail address?"

I was stunned. What was an e-mail address? Remember, this was before the Internet was really available to the public, and we certainly didn't have it. There must have been a bare-bones version in some colleges at the time. I told her I didn't have one. I said I was sorry to bother her and she hung up on me. And so ended abruptly my conversation with the scientist I idolized.

I was mortified. Absolutely mortified. I don't know what I'd thought would come of calling Dr. Clark's office, or why I thought she would be relaxed and eager to hear from me, but I wanted to shut the episode out of my life as quickly as possible. I gathered everything and put it in a box, out of sight. I changed the channel when she came up on National Geographic and prayed that somehow she would forget that I had ever called. I shouldn't have. I should have been happy with the letters and let the whole thing fade away.

A short time later I found out I needed surgery again, which left my physical activities forever strictly curtailed and scuba impossible. And that was that.

Of course, poor Dr. Clark isn't responsible for any of this. It's part of the reason I hate phone calls...you never know what you're interrupting. An email can be perused at leisure, a phone call can't. She could have just received stressful news, or could have been in the middle of something important. That's inevitable, because she's done extremely important work all her life and made enormous strides. And I still respect her, immensely.

I do hope that she forgot that I called, though.

Tales from the School Bus.

2009-02-05T08:54:00.004-05:00

In third grade, or maybe fourth, we had a substitute bus driver on the home route. She didn't know the stops and she was blowing past them left and right. It was a bus full of elementary school kids, we were scared. So there were kids standing up and screaming "stop, stop!". She thought we were doing it to be obnoxious. She was going about 40-45 down a residential street (from what I heard later) and she'd just missed another stop, so kids were standing up and yelling for her to stop. She snapped, screamed "You want me to stop? I'll stop!", and slammed on the brakes.

Kids went flying everywhere. I hit my head on the seat in front of me, then the seat behind me. One kid cut his head open on the first-aid box over the back door. The next day, there was an announcement for everyone on my bus route to come to the cafeteria. There was a tableful of adults...our principal, vice principal and probably people from the school district or bus garage. We were separated and asked to tell what happened one by one. We never saw the woman again.

_______________________________________________________________

In junior high, I had this really great bus driver named Mary. The kids were making fun of my hair. In front of them all, she stopped the bus, came over to me, and said loudly, "Don't worry, honey, they're just jealous because they all got shit-brown hair." Right in front of a bus full of junior high kids, back when "shit" was still a word with some naughtiness to it. She was my hero for a while.

_______________________________________________________________

In my earliest years of high school, there was this kid one grade above me named Sam. Sam was a very unhappy guy. He was very witty and intelligent, from what I could see, but he was also heavyset and had acne and glasses, a common but unfortunate phenomenon in high school. Kids harassed the hell out of him.

One day, this one kid was especially bad. When we arrived at his stop, Sam got off the bus wordlessly and crossed in front of the bus to his driveway. There he selected a basketball-sized ornamental landscaping rock and hurled it as hard as he could at the bus. I think he was aiming for the approximate window of the kid who had been teasing him, but instead it crashed through the glass onto the empty seat in front of mine. I had shards of broken glass in my hair, it was pretty scary.

I don't think Sam was prepared for what happened when the rock actually hit the bus. He gaped in wide-eyed surprise at the crash of the glass for a split second, then turned and ran for his house. He fumbled at the front door for a moment and then slammed it shut behind him. At the same time, our bus driver let out a roar of rage and hurled herself down the steps. As she pounded on his front door and screamed obscenities, we could see Sam's sad moon-face looking down at her from an upstairs window. I half-wonder if he barricaded the door just in case.

Sam didn't ride the bus again after that.

__________________________________________________________________

An experience with the same bully led to my own early departure. The kid...the same one who had tormented Sam...was seated behind me. I had my hair in a ponytail; he was playing with a pocketknife. In one deft move, he grabbed my ponytail, held it up, and cut through the hair underneath it. I was left with nothing but backwards-bangs at the base of my skull.

When we finally thought of what could have happened to my neck when he was cutting, or what would have happened if the bus had gone over a bump, my mom and I decided that I didn't need to be riding the bus anymore. The kid was vindictive and scary in a criminal sort of way, and I never told an authority figure. I had too much to lose if he decided to get behind me and shove me down some stairs or something. I swear he was right out of a Stephen King novel.

I always wondered if he ended up in prison.

Rule #34 makes for one of the more jacked-up reading experiences of my Internet life

2009-01-30T18:14:00.004-05:00

To paraphrase Internet Rule #34: If it exists, there is porn of it.

Which is how I went searching for some hockey stats and ended up being scarred for life.

I'm not going to even go down the road of trying to understand the time, effort and amorous motivation to write erotic fanfic about the Columbus Blue Jackets. I'm just going to be vaguely bewildered that it exists.

As I said last night, imagine some poor team member's wife or girlfriend googling his name, you know, seeing what people are saying about him....and stumbling onto:

Like Kris Russell, Vyborny was quiet, hardly ever showed anger,
hardly ever got sent to the penalty box, was soft-spoken, and very
polite. You couldn't find any words to say when he closed the door,
still holding your hand, and pulled you closer to him. " Don't tell
Irena about this," was his only comment (Irena was his wife) before
brushing your hair away from your face, and planting small, delicate
kisses over your neck and face. You felt like you were going to fall
over from shock. You had never imagined being locked in a closet with
David Vyborny. You literally felt your knees collapse underneath you
when Vyborny moved away from you neck and onto your lips.

Part of the fantasy included her being Rusty Klesla's sister, which I'm just going to let remain one of the universe's mysteries.

I was somewhat bemused to find that my favorite player, Pascal Leclaire, was portrayed as some sort of sheep-eating doofus manboy. I'm vaguely sure he isn't, although I don't want to drift too far into the territory by speculating. Wonder where she picked up the sheep thing. He does tend to say some weird stuff in interviews.

I think this calls for a rendition of Avenue Q's "The Internet is for Porn". I know you see Sesame Street, but I assure you the audio on the clip is not safe for kiddies, work or religious types. Catchy, though.

Edited to add: Oh my god, I spoke too soon. Apparently there is some Pascal Leclaire erotic fanfic. These Quizilla girls certainly do lust after their hockey players. Well, I guess enjoy the adulation if you've got it, right?

Ah, lovely, it's the annual "let's figure out a way to drop you" drug coverage survey.

2009-01-28T12:27:00.003-05:00

Ever since Wellcare (aka "default drug coverage for the disabled and destitute") took over my Medicare Part D coverage, I've gotten one of these surveys every year. The nearest I can tell, they're fishing for any info I might be concealing about all of the insurance coverage and piles of cash I'm getting from other people. My situation makes it very easy to fill out. I'm young, single, with pre-existing cancer and no money. In short, no other coverage will have me.

What made this all the cuter is that it arrived the same day as their monthly "look what we did for you" summary that only underlines how desperate things are. The amount I had to pay out of pocket in January, for drugs necessary to live, was almost double what my plan paid. As a matter of fact, when you factor in the newly-hiked-up premium, my monthly outlay for prescriptions alone is 27.5% of my monthly disability income. That's hormone and anti-spasm stuff made necessary by the cancer and radiation. I'm not having a big vicodin-and-soma party over here.

We won't go into my medical bills, it's too depressing. I'm thinking of pricing out cardboard boxes and hoping for warm weather.

You know, I really don't want to look ungrateful. That's not the case. I'm thankful I have the coverage, I really am, and I know that our country's financial situation is worse than it's been in a very long time. But can't they look at their processes and make cutbacks there? I mean, I really do get two or three, sometimes four, duplicate insurance cards a year. I don't know what to do with all of the formularies and thick sheaves of summaries I receive. Why does the effort always seem to go towards pouncing on people to deny or drop coverage? I don't even need a hard-copy formulary if one was available online.

Grumble.

Why being on Medicare Disability has always scared me a bit...

2009-01-22T08:46:00.004-05:00

...especially now, as financial times grow tougher and there's more scowling over the affordability of gadgets and fun stuff...

Action T4

Let's hope we know better this time around, right?

This poster reads: "60,000 reichsmarks is what this person with hereditary defects costs our community during his lifetime. Fellow German, this is your money too!"

For what it's worth, I never wanted to be on Medicare. I worked until it became physically impossible for me to do so, And I try to give back to society as much as I possibly can in return.

100 Exceedingly Polite and Cheerful Books...

2009-01-19T15:31:00.003-05:00

...have been labeled, cleaned and are ready to be distributed (dropped off at various thrift stores).

I had to think for a while about what I was going to put on the labels. The first prototype was too chatty and said too much about me wanting to know what happened to the books. It made me sound as if I hadn't fully resigned myself to letting the books belong to someone else. I'm trying really hard for that not to be true ;)

I figured that people would be more cooperative if it was seen as a "project" (ideally, "THE project", implying the collaboration of everyone) and not just one woman's idle curiosity. It also leaves room for the project to be expanded, if it comes to that.

I would have dearly loved to have a website all ready for people to log their own information, but I just haven't gotten that far. I'll save any info from emails and use that to help build the database. And if anyone chooses to respond with just the number, I have the numbers all logged (by my own aching hand) in a notebook.

In other news, I'm going to go back to the neuro next month. My neck-and-base-of-skull situation has been getting weirder and I'm beginning to wonder if maybe the violent muscle spasms somehow pulled something loose. I fully admit I have no idea what's going on in there anymore.

An update on Greg, his boat, and collections...

2009-01-17T12:37:00.000-05:00

My phone rang again this morning....866 number I didn't recognize. It stopped ringing before I got to it, so I picked up and called back.

The lady answered, "National Collections Operative", or something like that. I said someone from that number had just called me. I heard a lot of quiet shuffling sounds, like she was trying to pull up an account from my phone number or something.

She asked, evidently getting ready to go into some sort of spiel, if the number I was using was the number they called. And then I laid into her about Greg, his boat, and being sick of being called constantly.

Then she said something that threw me..."Well, we're the Greg people, but we're not the boat people."

......?

Greg and his boat were inseparable in my experience and their combined powers were a key element of my phone misery. Up to that point, I didn't know that Greg and his boat didn't always go together.

Anyway, I took down her name (Cora), her company's name (NCO), her manager's name (Cecilia) and the date and time. She says she'll take me off the list of numbers. We'll see. I could do with 15 fewer nonsense calls a week.

Is this the end of the Greg and his Boat saga?

2009-01-16T14:34:00.000-05:00

more animals

My neck's not been doing so hot. I hope it gets over its tantrum soon.

A wintry day.

2009-01-14T09:59:00.002-05:00

Here's Sammy looking out at the snow. You can tell it's him from the scratch-and-dent ears.

I'm just basking in my surfeit of winter misery here, watching the flakes fall. Weather changes, especially in winter, make the arthritis bad, and my arthritis is in one of the more inconvenient locations. I'm having trouble turning my head and the ordinary popping and clicking of my neck has been reduced to an agonizing grind. This happens sometimes, but don't ask me to be in a terrific mood when it does.

Anyway, I'm glad we all have a warm place to sleep. I found a box of stale Cheerios yesterday and spread it out for the birds. Not sure whether or not they actually like stale Cheerios, but it's better than nothing.

558% Really?!?

2009-01-13T08:26:00.004-05:00

I'm handy with calculating percent increase. At my old job, all of the statistical reports fell to me for that very reason (or, perhaps, the reason was that statistics can be pretty dry and boring and everyone else fancied that they had more important things to do). I get one number and I get another number, and I automatically calculate how much it's gone up or down.

So I get my bill from my Medicare Part D prescription plan, and I do the math automatically. And my premium has gone up 558%.

Well, actually 557.88%, but you know, round up. I did the math several times, then used an online calculator to make sure, just in case my radiated brain was failing me. From (Undisclosed Amount 1) to (Undisclosed Amount 2), a five-hundred and fifty-eight percent increase. Which I found terribly funny on one level because it ate up my "cost of living raise" from Social Security Disability very neatly, almost as if planned. Not so funny on other levels, but you know.

Don't get me wrong. I'm happy to have coverage at all. The prescriptions I need in order to live would cost way more than I could ever hope to afford without it. I'm grateful for everything I have, remember quite well how it was to struggle with nothing at all, and would rather pay an inflated price than go without.

On the other hand, I paid into the system, worked the majority of my adult life against the opinion of my physicians precisely because I didn't want to be a drain on society, and I'm always a little taken aback by cost hikes and cuts. Good lord, want to cut some costs? How about not sending me four or five duplicate prescription cards per year? How many formularies do I need? What about an e-statement option instead of 20 pages about the Synthroid they helped pay for?

My Medicare file is about 3 inches thick. My Medicare Part D file is a small Rubbermaid storage tub. I'm just sayin'.

I saw the new amount I was to pay, and I said to myself, "Oh well, there goes the cost-of-living increase, but I'll manage somehow in order to keep drug coverage." Which is probably what everyone else did, too. But when you run the numbers and see how much the increase actually was....I just don't know.

Where do my books go? (not to be confused with Yeats)

2009-01-12T09:27:00.003-05:00

I have spent my life amassing an enormous quantity of books. Most of them are nonfiction and the majority of them are relevant to me (that is, they're lovingly selected...I don't buy them just to have them). They're meticulously arranged by subject and they number in the thousands by now.

In part that's due to the fact that I have two or three "backup" copies of some well-loved volumes in case one wears out. Or sometimes I have several editions...I like the color plates in one, the other is an antique, and the third is a lightweight paperback I can carry with me. All are equally indispensable, at least to me. My books are my best friends and always have been.

People hate helping me move because they know there will be storage bin upon storage bin full of books, probably weighing well over 200 lbs apiece. I've moved book collections myself and landed in the hospital because of it. I've been subject to bookshelf cave-ins and other catastrophes enough to admit that there is an element of self-harm in this. Periodically, out of sheer necessity, I have a weed-out and watch with a lump in my throat as a Goodwill worker carts some off or they're picked over at yard sales.

I was lying awake last night (next to my bedroom wall, which is one large bookshelf) and thinking about my attachment to the books and how I wished I could see or know where they were doing when they'd moved on. As if one could ever send me a postcard...."Hey, Amorette...doing great here, landed on the bedroom shelf of a little girl who's interested in history...tell Lives of the Saints I said hi!"

I got up and registered the domain wheredomybooksgo.com.

You know the principle behind wheresgeorge.com? Someone was interested in where their money went, so they rubber-stamped it and whoever finds it can enter the serial number in a database, tracking it. I don't much care where my cash ends up (probably because I never see it long enough to develop an attachment), but I do care where my books end up. I figure, I put a label in a book as I'm giving it up. Wherever it lands, that person can email me or somehow log it on the site. I probably won't hear back from most people, but a few might email me. And that would be really cool. I'd like to know how my books are doing when they go back out into the world.

"Greg", whomever and wherever you are, pay for your damn boat!

2009-01-08T17:50:00.001-05:00

A few months ago, probably starting around September, I started getting these calls on my cellphone. At first they were real human beings, and they asked if they could speak to Greg. I told them they had the wrong number and they thanked me and hung up. I didn't think much of it back then.

Then the calls amped up a bit. They were still human, they identified themselves as being from some organization I regrettably can't remember the name of, and they said they needed to talk to Greg. I said sorry, you must have the wrong number, no Greg here. They usually elaborated, after I told them they had the wrong number, that they needed to speak with him regarding his boat. His boat? I said, sorry, I don't know any Gregs with boats.

After being pestered with these calls for a week or so, it occurred to me to tell them to please stop calling me. Right when I made up my mind to do it, the calls stopped coming from human beings I could talk to. Sometimes it was a machine right away, sometimes it was a person who just said, "Greg?" or "hold please" when I picked up and then transferred it to a machine.

The machine messages are more or less the same, and they never give a name, address or phone number of anyone I can contact. Each time it's like it's cut off and doesn't really give any useful information whatsoever. They go more or less like this....

"....message with important infor-MA-tion regarding your account. Your PAY-ment is now past DUE. PLEASE send your PAY-ment."

It doesn't say where the payment should go, who wants it, or where to contact them. It's like the message is cut off at both ends.

Look at the caller ID, you say. Yes, I thought of that. It comes up as UNKNOWN with no number. My cell refuses to call back an UNKNOWN. I look through my call history and it looks like this:

UNKNOWN
UNKNOWN
UNKNOWN
UNKNOWN
mom
UNKNOWN
UNKNOWN
vet
UNKNOWN

I don't want to change my number because of this crap. But it won't let me block calls from UNKNOWN and I can't get a real human anymore to tell them to leave me the hell alone. >:(

Starting last week I also had an 800# start calling me to tell me this was my last chance to take advantage of their special warranty on my car. Seeing as I don't drive or own a car, that's quite a trick, innit?

Meet our newest pet, "Popcorn"

2009-01-05T20:34:00.001-05:00

...what, you thought it was an animal?

No, Popcorn has a pretty unique story. Mom got me a hot-air popcorn popper for Christmas, which I love and use often. It fills a mixing bowl perfectly with half a cup of popcorn kernels, with only one or two unpopped kernels left. These kernels either rattle around in the machine or get blown out onto the countertop, where I make my usual swipes with the wet dishcloth.

So the load with the wet dishcloth goes into the washer, followed by several other loads of laundry, and as I'm taking wet clothes out I hear something rattling around. Afraid it's another button off Justin's pants, I go searching and come up with this little popcorn kernel, which has suddenly sprouted.

When I brought it to Justin and showed him, he said, "I thought those things were sterile." I didn't have a good answer for that, other than shrugging and saying, "Well, so was I."

I was very respectful of Popcorn's....what? Tenacity? To go through a hot-air cycle where 99% of your fellow kernels are blown to smithereens (I picture something like Carousel in Logan's Run), then get smuggled aboard a wet dishcloth into a washing machine and put through several cycles, and still come out fighting. I admire that.

So Popcorn went into a silicone cupcake cup with shreds of wet paper towel, elementary-school style, and has been growing nicely. The first leaves are beginning to show their green behind that coleoptile (sheath) there. Ideally, I'd like to get Popcorn into a little planter of his or her own with some potting soil.

Apocalypse and the Cancer Patient

2009-01-04T10:34:00.002-05:00

Over the new year, my enjoyment of History Channel's "Seven Deadly Sins" series was marred considerably by their extensive promotion of "Armageddon Week". CGI renderings of meteors smashing into Earth. Pen-and-ink drawings of Nostradamus looming ominously. Fade-ins of the Mayan calendar. Doom for us all.

I think that Discovery and National Geographic might have some similar programming around the same time, but here's a screenshot of History's site this week:

I don't understand people and their fascination with predicting the extinction of life on earth. I've never been able to deal with these shows, or with people who gleefully repeat the warnings of Nostradamus and the dangers of the Large Hadron Collider. It invariably begins with, "Did you hear the world's supposed to end?"

Maybe it's my life experience or maybe it's my personality in general, but I don't see the point in fretting and rehashing. The world ends for hundreds of thousands of people every single day, and only a successful suicide can predict when his proverbial number is up.

Will the Large Hadron Collider cause a black hole that engulfs our reality? Possibly. I could see an experiment someday that somehow ends up killing us all. They've got to get it up and running again, though, and thanks to the recent damage, that won't happen for months. Will it rip a dimensional hole through which aliens from Half Life come and wreak havoc on our planet? Sure, why not? If I wrote them a letter saying I was worried about the end of the world and pretty please would they stop work on it, do you think they'd heed me? Nooooo, don't think so.

Does the Mayan calendar accurately predict the end of the world in 2012? Probably not. The Mayans didn't seem to think so. This whole "Mayan Calandar Predicts the End" thing started with a handful of new-agers who, admittedly, weren't Mayan. December 21, 2012 ends a cycle, but the end of a cycle doesn't necessarily mean The End Period.

Did Nostradamus predict the end of the world? Well, doesn't he always? When Nostradamus wrote his predictions, it was in 16th-century French, for starters. Add to that the fact that he wrote cryptically to avoid being persecuted, and you're greatly narrowing the field of people qualified to even have the basest understanding of what he was talking about. I'm guessing that the aforementioned field is a lot narrower than the one we're now dealing with. I'm of the school that believes he was writing social commentary, not predictions, and it just kind of got skewed by people with their own agendas. In Nostradamus' experience, the world ends on July 2....1556.

"Could Violent Solar Activity end life on earth"? Well, sure it could. Solar activity dictates a great deal of what happens on earth. We had our last big solar storm in '58, I think, and then it dropped off. NASA predicts that it will amp back up by 2010 and reach its highest point at 2012. Could it kill us all? Maybe. Does it make me feel better to envision our faces melting off like the Nazis in Raiders of the Lost Ark? No, not really.

Although it could certainly happen, the world didn't end in 1958. Depending.

My point is, I don't know when "my" world will end, much less "the" world. And I don't want to know. I'm just going to keep doing what I do and whatever it is will happen when it happens. I'm not wasting any of this very precious gift we call life in fretting about when it will be over. I'm wondering if the end-of-world theorists ever had any life-threatening events in their lives. I can't help but feeling that if they had, they'd be busy trying to make the most of every moment and not worrying about all of this.

I will not be watching programs during "Armageddon Week", "Doom Week", "The Sky is Falling Week", "What About the Large Hadron Collider" week or anything of the kind. I will be cracking open my beloved collection of Are You Being Served? DVDs instead:

Some things that you can do if the world doesn't end as predicted:

Make lemons into lemonade, like the Millerites.
Make sure it at least ends for you so you don't look stupid. (Several men have killed themselves when their prophecies didn't come true.)
Laugh at how we all looked stupid together.

And one last thing I want to say...I really do advise moderation in all of this apocalypse stuff. Obsession really can be fatal, and that's pretty horrible.

Go out there and live your lives. Don't worry about the world ending, it'll come soon enough.

Here's a handsome Italian for your weekend enjoyment :)

2009-01-03T12:30:00.003-05:00

Mom spotted this gondolier in Venice in the summer of '93 when she went there with Dad. The next fall, I went and performed an exhaustive search- really wanted to see him, but no luck.

Coincidentally, the stereotypical "handsome gondolier" is somewhat of a rarity and most of them look pretty much like the rest of us:

...in which I find out that yorkies really are ankle-biters.

2009-01-01T00:32:00.002-05:00

Having to take Chloe out can be maddening, since she's still in that easily-distracted puppy stage where she forgets she needs to go if anything interesting is going on. And it's always my luck that the minute I step out the door with her, a very distracting neighbor is stepping out as well.

We have a neighbor to one side of us who has two yorkies...an adult male and a female puppy. The adult male has always been yappy and aggressive, so the neighbor put up a flimsy fence of large-gauge chickenwire to keep him contained in the backyard. Mainly they run around and yap and aren't much of a problem.

Today wasn't going to be a good day anyway...I've had some sort of miserable stomach bug for the past few days. I also had a bad headache, and when Chloe barked to be let out, it felt like someone stabbing me in the eye with an ice pick. I wanted to get her out as quickly as possible. So I shuffled around in search of shoes and leash and hustled her out the front door. I heard the neighbor puttering around in his driveway, and I didn't want Chloe to notice, so I ushered her around back.

Of course, the man's dogs were in his backyard. The adult male immediately started barking and lunged for the fence. Chloe, not knowing what to do, reared up like a stallion and barked back. I attempted to yank on her leash and get her away. As I was doing this, I noticed the yorkie appearing to back off, so I thought the interaction was over and continued with Chloe toward the middle of our backyard, away from the fence.

I turned back just in time to see the dog take a running leap at the fence and then execute a perfect leap through one of the holes in the fence. I mean, I couldn't believe my eyes. It was like a circus dog jumping through a hoop. Once he was out, he came barreling at us full-speed and attacked us. He got me many, many times on the ankles and got Chloe's feet. Fortunately for all of us, he didn't draw blood...it was like a series of hard pinches.

I was still worried about how to control Chloe...now that she's big, it's like trying to control a horse. I yelled at the dog to go home, which it didn't do. Every time I turned around to get Chloe back in the house, it attacked my achille's tendons. Chloe was bucking and rearing and still not knowing whether to attack or flee. I backed us up against the outer wall of the house and inched us sideways to get back to my own front door. Even then, I had to shake the dog off of my foot to get in the house and lock Chloe safely away.

Once I had her taken care of, I realized I couldn't just let this dog run around. I was afraid it'd run out in the street or something. So I went back out to find the neighbor, and the dog lunged after me again. It bit at my ankles and feet and I couldn't even get near the guy's house. Keep in mind, all of this was happening while I was nauseated and had a blinding headache, so my faculties are a bit limited anyway. Finally I stood and shouted for the guy until he realized his dog was missing and he came out.

I didn't get a chance to explain anything more than the fact that his dog got out. He loudly offered it treats and said he meant to get some smaller chickenwire, then ushered the dog inside and left me standing there. I don't think he knows it attacked me and Chloe. Guess it's double-fortunate the dog didn't do any physical damage.

A couple of people have asked me why I didn't kick the dog away. I guess I just don't have it in me to kick a dog, because that never occurred to me.

I hope he fixes that fence, I don't want a repeat of this.

Oh, this is fantastic.

2008-12-25T11:03:00.003-05:00

EPA Allows Companies to keep Carcinogen Information Secret

On behalf of future generations like me...thanks for all the cancer!

...at least it didn't ruin a holiday this time.

2008-12-15T19:18:00.002-05:00

Every three or four years, my neck muscles decide that they aren't going to take any more crap from me. They seize up hard...hard enough to bruise my collarbones from the metal inside my neck brace...and don't let go in a day or so as they normally would. I suppose it's because asking those scrawny little buggers to do all the work of holding up my head is asking an awful lot. Anyhow, today was my day, and they went on strike bigtime.

I could feel it building over the past few days. The postsurgical arthritis gets revved up and spins off into headaches here and there. When it gets going at a steady hum, I get sharp pains through my face that make me prod my cheeks and worry about Bell's Palsy or stroke.

But that's all just a setup for the headlining act. In back, the muscles cinch themselves up to where my shoulders are almost level with my ears. In front, my chin pulls itself down toward my chest and takes down anything that stands in its way (like a brace). I'm sure I must look like a frightened turtle with no shell to pull into. This is one of those going-home prizes you get with radiation therapy...it cooks your muscles and makes them behave unpredictably. Fun stuff.

After the pain spikes for a day or so, it reaches a whole new level that just about drives you out of your mind entirely. One moment you've got bad charlie-horse pain, and the next minute you've got dear-God-what-just-happened pain. The latter pulled into the station at about 3 this morning, and no amount of tossing or turning was going to take care of it. I paced, considered ambulances, was sure that I'd just broken my fusion again. I could imagine my spinal cord, bulging with fresh cancer, bursting through fused vertebrae like the Incredible Hulk through pants.

You get pain at that level and you know something has to be bad wrong. I was sure of it. I was afraid to move lest another stray chunk of bone make for my spinal cord. Since this has happened before, I had a feeling for what it might be, but when the pain spike hits, it brings a certain irrationality with it. I managed to tough it out until about 9 am, and then headed for the ER. And that's where I spent my day.

The MRI revealed that my messy situation wasn't any messier and that it was, as I suspected, the postsurgical arthritis and muscle spasms double-teaming me. I spent some wonderful loopy-loo time on Phenergan, in which I invented some new languages and observed my world waving softly around me like a flag in the breeze. Can't wait for my next dose of that stuff.

Anyhow, once you establish that you're lucky enough not to be screwed with a new batch of cancer this time, all you can do is wait for the spasm to wear off. So that's what I'm doing. I feel as if I have boiling water pouring down my shoulders and arms, my collarbones are bruised, and my muscles will be too by this time tomorrow, but I am waiting patiently.

Last time, it happened on Thanksgiving and I'm pretty sure it ruined everyone's day. At least it happened on a Monday this time.

The most frustrating thing is that this is just one more "long term cancer patient" episode that no one knows how to handle. It's not a tumor to remove, it's not a sports injury to heal, it's just trying to limp through the rest of your life. It's happened before and will happen again. Later rather than sooner, I hope.