Monday, April 27, 2009

Culling the Herd?

I've been reading about the so-called "swine" flu that has hit Mexico, the U.S. and now Spain, New Zealand, and a few more places. As reported in the press, the responsible virus has components from three continents and from three types of animals--human, bird, and pig. To my thinking, it seems highly unlikely that something like this would develop on its own, without the assistance of government and pharmaceutical-company labs.

Now before you stop reading, consider that not too long ago, Baxter International had shipped out flu vaccine containing avain-flu virus. A simple matter of sloppy work as is often seen in food processing when components used in one food product inadvertently contaminate a batch of some other food product? That might be a plausible explanation, if only that a pharmaceutical company is not supposed to be in the business of manufacturing pandemics.

The Baxter story was not covered in this country, though it was widely reported in Europe and Canada. Once again, the U.S. is in a news bubble.

And guess what, folks--Baxter is working on a vaccine for this latest "swine" flu. Oh, great, the same company that tried to start a pandemic less than a year ago by manufacturing tainted vaccine now has the contract to make a second go of it.

Though this story is disconcerting for anyone, it is especially so for me, as Baxter is also the manufacturer of my dialysis supplies. Everything from the solution to the tubing. What I've wondered since discovering all this: Is Baxter "culling the herd" by adding something toxic to the dialysis solution, something that wouldn't kill a patient outright--she needs to be kept alive for some time to generate income for the pharmaceutical giant--but would slowly work against the body over time?

This whole notion of culling the herd has been around for quite some time. My first exposure to it was about 20 years ago. On one level, it makes sense. The world has way too many people, and a whole lot more are coming. Our resources are finite; no new timber, oil, or land to grow crops are entering our world from some other planet. What we've got here and now is all there is. The only solution is to cull the herd. Of course, the more benign approach would be to prevent births in the first place, take care of the problem on the front end. This could be done through tax disincentives for having more than one or two children or incentives for voluntary sterilization. I mean, seriously, why are the tax laws still designed to reward big families? That might have been a fine idea 150 years ago when this was a young country and lots of kids were needed to do farm chores. But that's not the nation we are currently living in.

The really spooky thing about Baxter is that, every time I would call the company to place an order or check on the status of an order or get tech support, this awful, sappy music would play while I was on hold. Always the same annoying song. I complained several times, but nothing happened. Then I started telling the rep that if I were shooting a horror film about forced euthenesia, I would use this song as background music. "It's music to kill by" was the message I left on a supervisor's answer machine. That must have struck a chord with Baxter because about a week ago--before the outbreak in Mexico--I was informed the company is changing the music.

Sunday, April 19, 2009

Wow! Some of These People Look Like Stoners




Last night I attended my first ever laser light show. It is rare when an experience exceeds one's expectations. This was certainly one of those times.

This was Aaron's third Pink Floyd Laser Light Show, but even he said that this year's was so much better than anything he'd ever experienced previously.



Even before we entered the packed auditorium, I was giggling as if I were high. For the record, I was not, though I had been in close proximity to someone who had smoked. (No names will be divulged.) Aaron said that was great that all I needed to do was to watch someone else get high in order to get me going. Yes, it doesn't take much.

A lot of long hairs and spacey chicks. "Wow!" I remarked at my fellow audience members. "Some of these people look like stoners!" Aaron agreed that if you were looking for stoners, this would be the venue at which to find them.

I was awestruck throughout the two-hour performance. With the special glasses, light beams were pulsating, throbbing, undulating, and ricocheting across the stage and over our heads. Images from the classic science fiction film "Metropolis" and from "The Wall." One segment at the beginning of the production featured a black-and-white film of a man in a bed with wheels that just started moving of its own accord, down a hospital hallway and onto a runway. The man looked like a young version of Mike. So interesting because he died three years ago on April 16.

Watching all these colored images and light beams and even tunnels of light surround me, I was in an altered state. I was so spacey, but in a very good sense. I wondered if this is some of what I was oblivious to as a young adult, as I missed out on illicit drug use, rock concerts, and mindless sex when they were easy to come by and with few consequences. My youth was spent on other things: listening to "The Blue Danube" over and over again, collecting statuary pigs, weaving potholders, hanging out with my dog, writing poetry, hybridizing houseplants, gardening, reading about ancient civilizations and the occult, and entering trance-like states while gazing into the woods or the meadow. In fact, I attended my first ever rock concert about two years ago--The Who at the Long Beach Auditorium.

Saturday, April 18, 2009

Not So Good

Though yesterday I was feeling really good, delighting at the sunshine and the beauty of the world, interacting with those I met with a big smile, last night was a different story.

In the afternoon, I had consulted with a physical therapist. Now that I have so much more energy and so little chest pain and shortness of breath since beginning dialysis, I want to exercise to improve my blood circulation and heart function. But I have been doing as little exercise as possible for the last several years. So how am I to safely begin exercising again? I have been taking walks to the ocean, but wanted some guidance. The very friendly Alex gave me an exercise schedule and showed me how to lift weights. So yesterday evening I did as Alex had instructed and walked 48 minutes non-stop, no stairs. (He told me to build up to stairs.) That felt good, being out in the world, seeing the play of sunlight and shadows on buildings, the flowers, other walkers and their dogs, the wonder of the ocean.

Upon my return home, I had to hook up. This is when my mood changed. Aaron was having dinner with his dad and stayed overnight at his dad's. I was home alone with the dialysis machine, A.K.A. the cycler. As I have for thousands upon thousands of nights, I prepared to sleep alone. It's been almost 10 years since a man shared my bed. Not counting the Canadian who gave me a ride home when my van wasn't working and wouldn't leave my cabin in Nova Scotia until the morning, but I'm not counting him. Sure, there have been a few, a very few intrigues, but these have occurred in the daytime. Actually, I have only literally slept with four men in my entire life--Rod, though he always told me to get over on my side of the bed; Shizeng, though he was only with me a few weeks; Mark, a gay friend I visited for a week while he was a student in Texas, and this was simply sharing a bed, no touching; and Mike. And I was last with Mike in January of 2000.

Life is so difficult alone anyways, but add to this dialysis, and it's sometimes overwhelming. Last night I was overwhelmed. I cried myself to sleep, then woke up around 2, as I have been doing quite frequently since starting dialysis. I went through an hour-or-so round of crying, then dropped off again.

This morning I've been lethargic, still in my pajamas at 10 o'clock. I know this doesn't seem decadent to most people--lazing around on a Saturday--but I'm generally up and at 'em by 7 every day of the week. I took care of all the dialysis protocol--unhooking myself, putting a new iodine-laden mini-cap on my transfer set, draining the dialysis bag that still had some fluid in it, putting the used supplies in the garbage, carrying the collection jug to the toilet and dumping, weighing myself, taking my blood sugar and blood pressure, recording this data. Then I went back to bed and had another cry.

I know that when one is sad, one is supposed to isolate the problem, not allow a single event to spread out into everything wrong that's happened in one's life to date. That is, if your boss criticizes your work, you can be upset about her criticism, but don't start thinking about how your mother never thought you could do anything right and how your ex-husband was always nagging and on and on. Isolate the problem.

The problem is I have difficulty doing that. It all seems so inter-related. Mostly these cries have been about loneliness coupled with dialysis and the realization that now that I am not a kidney-pancreas transplant candidate, my wait time has more than doubled, provided I am approved for a kidney transplant. The wait for the former, as given at Thursday's orientation, is two to three years, since as long as a cadaver is giving up a kidney to a recipient, it makes sense to use the same cadaver's pancreas for the same recipient. But the wait for just a kidney for an O blood type, which I am, is seven to 10 years. (AB, four years; A, five to six; B, six to seven.) I've only been doing dialysis for two and a half months. Just the thought of a decade of doing this makes me numb.

All the kidney support materials speak of not giving up hope. As of now, here are the things I have to look forward to: 1) spending the rest of my life hooked up to the cycler every night and doing a mid-day exchange every day; or 2) waiting seven to 10 years for a cadaver, but probably dying before one becomes available, which means #2 is really #1. It seems as if my only real hope is to be run over by a bus as soon as possible.

But, of course, as always, I will eventually get dressed today and go out into the world smiling. Just as no one has ever seen me at my worst physically, no one sees me an my most anguished.

Friday, April 17, 2009

A Little Cry, Then Back on Track

I had a few little cries yesterday after I got home from UCLA, but I slept well last night and felt better this morning. Dr. Butman gave me a call mid-morning and said that he knows Dr. Wilkinson, the director of the transplant program, and assured me that Wilkinson would not pass the buck, that if he thought I was not a viable candidate, he would have let me know yesterday. That was good to hear. So there still is hope.

After this call, all the sadness and disappointment of yesterday vanished. I was buoyant and happy all day. A temporary stumble, but now I'm back on track.

Thursday, April 16, 2009

My Day at UCLA

Today was my big day at UCLA. I arrived early to a small conference room in which prospective transplant patients were already filling out paperwork. Aaron arrived a few minutes before the slide presentation by an RN and a social worker began. They spoke about the program and didn't pull any punches with survival rates, wait times, post-transplant medications and insurance coverage.

Afterward, I was given a room in which to preform my mid-day exchange, while Aaron went to get us some lunch. He had to leave before my clinic visit.

I've been putting so much into this meeting, asking everyone I know to pray. Even the atheists in my life said they'd give it a whirl. I wore a wool suit. I even printed out my resume and brought my best travel clips from glitzy lifestyle magazines in case I had to make a pitch for why I'm valuable. Aaron had teased me: "C'mon, Mom. This is LA. You better bring head shots and a movie script!"

The first person to see me was a kidney-pancreas transplant surgeon, Dr. Gerald Lipshutz. He listened to my breathing and to my heart, took my pulse, peeked at my PD setup and insulin pump. He asked me a bunch of questions about past surgeries, recent hospitalizations, blood transfusions. (It seems as if traces of the donor's blood stays in the recipient's system, thereby complicating blood typing. I had three transfusions in late 2006.) He must have spent 45 minutes with me. He was concerned about my heart history and the findings of an angiogram that was done in November of 2006 when I had the stent placed. I know he wanted to say "no" to the whole thing, but said that besides for my heart, I look great, my BMI is fantastic, I've got a great attitude. I showed him my home records, and he was impressed by my faithful record keeping. Basically, he connected with me, especially when I told him I was a professor of journalism at Cal State and also a writer-editor, and so he didn't want to be the one to nix it. He said he'd consult with the director of the kidney-pancreas transplant program.

Fifteen minutes later, the very kind Dr. Alan Wilkinson walked through the door. An Afrikaner I initially mistook for a German. He warmly told me the story of how he had met his German wife-to-be in South Africa and then proceeded to tell me the very complicated tale of her last name. A handsome older man with a cheery smile and bright eyes. He also voiced concerns about my heart, saying that kidney-pancreas would be too much surgery for me--eight hours rather than the two for kidney only. He, too, spent at least 45 minutes with me, discussing the risks I would face. Besides, 50 is generally the cut-off age for pancreas transplants. I said I could live with that decision, provided I'm put on the kidney transplant wait list.

After some pleasant chatting, the nephrologist agreed to let me see the cardiologist, provided Kaiser approves. I had thought that the Kaiser review board had said that I was to meet with the UCLA cardiologist today. That after s/he made a decision, it would follow suit. Oh well, it was a long day as it was. I can come back.

I'm wondering if these kind souls are merely passing the buck. They went from "no" to everything to "maybe" for kidney on the sheer force of my personality, conversational skills and smiles. But will that carry me to a "yes"?

I really felt deep down inside that I would get the go-ahead. Now, instead it reminds me of my social life. Men are always telling me how fantastic I am, how good-looking. But why don't I have a date for Friday night? It's the same with the UCLA docs. I look great, wonderful compliance, fantastic hemoglobin A1C, beautiful PD home records, but no date!

I'm beginning to understand what death row inmates must go through--waiting, appeals, hope, setbacks, more appeals, more waiting. Well, I haven't yet run out of appeals. There's still hope.

Monday, April 13, 2009

I'm Good but Slow

"I'm good but slow." That's how I summed up what Dr. Butman told me today about the results of a two-day test I did last week. I had to collect my urine for 24 hours, hook up at 6 p.m. so I'd finish at 4 a.m., go into the PD clinic for the nurse to take samples of the fluid in my peritoneum and for me to conduct two manual exchanges. All that to find out if I am dialysizing (clearing toxins) well and how permeable my peritoneal membrane is (how quickly toxins are passing through the membrane).

On the first count, I'm excellent. The KT/V value is considered good if it's 1.8. Mine was 3.8. But as far as my membrane goes, it's "low average."

This is disappointing, since if I were high average, I could eliminate the mid-day exchange. I could go all day from morning to evening hookup on the cycler without having to concern myself with dialysis. Had this been the case, I would have switched to a different solution called Extraneal, which can sit in the peritoneal membrane all day and is not reabsorbed.

I asked Dr. Butman if my membrane might change, if I might in time become a high average. He said that it's just the way I am, like having blue eyes.

He did say that he might consider having me dry during the day, that is, being like a non-dialysis person, who does not have fluid sitting in the peritoneal membrane. You see, as it is now, when I get up in the morning, I have two liters of dialysis solution in me. I drain this during the mid-day exchange and put two liters of clean fluid back in, which are extracted when I hook up at night. The reason for doing a mid-day exchange is that the fluid cannot sit in the peritoneal membrane for more than eight hours. After that time, toxins and fluids start to get reabsorbed by the body, thereby defeating the whole purpose of dialysis.

There is controversy surrounding the dry-during-the-day approach. The membrane should be kept moist so that when it is used, it is more supple and flexible, thereby meaning that patients should keep fluid in them during the day. Dr. Butman counters that, if you're constantly using the membrane, it gets worn out, so why not keep it dry during the day, thereby not using it during the day. It's hard to say which strategy is better for the patient on a medical basis, though I sure can tell you that, from an emotional and social perspective, going without the mid-day would be so wonderful.

Dr. Butman said he would be thinking about me on Thursday, when I meet with the transplant surgeons at UCLA. "Keep your eys on the prize," he said.

Sunday, April 12, 2009

A Hilarious Time Shopping for Lip Balm

I had such a hilarious time at Rite-Aid yesterday, shopping for lip balm. First off, Aaron thought we should just go to Ralph's, as it was closer, but I insisted on Rite-Aid. "I don't want the stuff they sell in the check-out line," I told him. "I want Burt's Bees!"

Once we got to Rite-Aid, I tracked down a clerk who thought I wanted something to make my lips "puffy." I suspected she was unfamiliar with the word "balm," so I told her I was looking for Chapstick. Aisle 15, she suggested.

Aaron did a little dance to indicate he was so happy we were at Rite-Aid.

Burt's Bees came in two varieties--peppermint and honey. I figured we needed to experience both.

But the adventure continued. "As long as we're here," I said, "let's really see this place, OK, son?" I told him that I used to spend a lot of time at Rite-Aid when he was a kid, shopping for stocking stuffers at Christmastime and for strange Easter candies. On that note, we took a gander down the Easter aisle. I spotted a chocolate bunny that was not standing upright in its box, making it look a bit depressed. This bunny's decline set us laughing, as did the Hubba Bubba chicken that, as Aaron put it, "poops plastic eggs."

Next up was the outdoor-entertaining aisle. "Here's my tip for you, son. If you're strapped for cash and you need a place to sleep, you can buy a lawn-chair cushion for under 30 bucks instead of wasting hundreds on a bed."

"Or you could just buy a whole bunch of them and tack them to your bedroom walls," he suggested. "A padded room."

I told him he was being silly.

After a few giggles about the fake-palm branch cabana umbrellas, we paid for the lip balm and exited the store. Before we even got to the car, I had ripped open the peppermint and applied it to my lips. Aaron did the same.

"Ooooh, it's so...."

"Tingly?"

"Yes, yes, it's tingly! Oh, that's so nice!" I squealed. "But what's going to happen if I put the honey variety on top of it?"

The honey scent smelled like real honey. I was SO glad we hadn't gone to Ralph's to get Chapstick! I was giggling with delight. "Who needs drugs?" I wondered.

"You sure don't," Aaron agreed.

And so we continued to laugh and carry on, all the way home.

This morning, before he went to work and I went to see my mom for Easter brunch, I was smiling and beaming once again, remembering our Rite-Aid silliness. "Isn't it too bad," I said, "that so few people in this country could have had the fun that we did at Rite-Aid? Isn't it a shame how lacking in simple fun so many people are?"

"Yes, it's really too bad."

In all fairness, I spent a great deal of my life as a sad sack, letting loneliness, ostracization, health problems, rejection, and all the other ills of living get me down. And then I found silliness!

Although it sure helps to have a partner in silliness, it's not absolutely necessary. Often I catch myself laughing when I am alone, laughing at something silly I just did.

So I encourage all to give silliness a try. You won't regret it. And maybe it will mean you won't have to use drugs to get you to where silliness can take you for free.

Playful. Intelligent. Sexy. Strange

Playful.
Intelligent.
Sexy.
Strange.

These are the characteristics I seek in a man. Sure, it would also be great if he had a job, didn't need a green card, drove stick, and could do magic tricks. But I'm willing to compromise a bit.

Do you know that I have been looking all my life for such a man and have yet to find him? I have met men who are intelligent, though they are often single-subject guys, not Renaissance men. We have great conversations about theology or psychology or science or philosophy, but where is the man who knows something about all of these and a dozen other areas too?

You see, intelligence isn't just about having an intellectual buddy. It's about finding a man who can use his intelligence to make nuanced conceits, ingenious feats of language that can be simultaneously interpreted as benign, polite conversation and as snares of seduction. Think John Malkovich and Glenn Close in "Dangerous Liaisons," though not quite so dark. I want to create a private, intimate world of metaphor with this man. So delicious, especially in the build-up to the first touch, the first kiss.

Sexy in the way he looks at me, the way he adjusts his rearview mirror, the way he slowly inches a butter knife across the table toward me in a crowded restaurant. A man who is confident but not stuck on himself.

Strange, well, of course. I don't want the average joe, but someone who is unconventional, who gives hints that he will bring that strangeness to the bedroom.

And playful, yes, yes, yes! I would love to have someone to play with! To be silly with! To role-play, oh, how I love role-playing! And yet in my entire life I've only found two men who were capable of taking on other personalities ahd histories. Think of all the fantastic possibilities: teacher-student, car owner-mechanic, diner-waitress/waiter, doctor-patient, homeowner-handyman, foreign tourist-native speaker, minister-church secretary.

And playful outside of sex too. Someone who would find fun at every turn, whether in the produce department or the ER, whether raking leaves or changing the oil.

In my 50 years on this planet, I have yet to meet a man who is over 25 and embodies all four of these characteristics. (Johnny Depp seems as if he does, but we have yet to meet.) Actually, very few have embodied even two.

I can only come up with four men who are over 25 and are playful. What a sorry state this country is in. Everyone is so dreadfully serious.

Friday, April 10, 2009

Easters Past and the Best Easter Gift of All

These days, Easter is little more than a blip on the social radar screen, but when I was a child, it was a major event.

I associated Easter, quite literally, with renewal and rebirth. After a long, cold winter in Wisconsin, I looked forward to Easter as the time of cattails and pussy willows in thawing ponds and streams, of the heavy scent of lilac blooms, of tulips in garden beds, of violets in the woods, of newborn birds and bunnies, of robins' eggs and blind baby moles. I remember wanting so badly for spring to burst free that I would even help it along by ramming ice in the culvert with a stick, attempting to dislodge it.

The spiritual message of resurrection and hope was physically played out in front of me at every turn. Just as nature was given another chance, so, too, would I be given a reprieve. This is what every blue sky and warm breeze and colorful blossom seemed to tell me. This would be the year when I would have someone to play with after school, someone to talk and laugh with; very soon, I, too, would have a friend.

Gone were all those long, lonely hours, days, weeks, and months of being holed up inside my parents' house. Gone was the hiding myself away in the basement or in my room. Even if a friend did not appear this year, at least I could leave the confines of this oppressive interior and feel sunshine on my face and explore the meadow and the woods, delighting in an outside world that was bursting with wonder and something that, if not quite joy, then certainly something very close to it.

I remember a lot of build-up to Easter. It was one of only two times during the year when I got new outfits--the other being the end of August, before the beginning of the school year. Selecting an Easter dress and shoes--or a new tie, shirt, and blazer for men and boys--was a big deal. An Easter dress was a happy dress in happy colors with ruffles or bows or other happy adornments.

Easter wasn't complete without lamb butter, sticks fashioned in the shape of reclining lambs; lamb cake, a dry, white-cake lamb with coconut frosting reclining on a bed of dyed-green coconut grass; and hot-cross buns, dinner roll-like sweet bread topped with white crosses of frosting. Add to this mix the soft pussy-willow buds brought inside and placed in a vase on the dining room table. The Easter-bonnet-and-Easter-egg tree, which I was told was a long-standing German tradition. And most magical of all, those eggs with the windows in them. I never owned one of these treasures, but could be enthralled for a long time, staring into their tiny, perfect, self-contained worlds.

Living as I now do in California, and as I have lived for many years, the wonder of winter turning into spring has greatly diminished. I live in a land of, if not perpetual good weather, at least weather that is no cause for complaint. And so it is far too easy to think of Easter as just another beautiful day.

Instead, this year, I will again consider its original intent. Next Thursday, a few short days after Easter, transplant surgeons at UCLA will determine if I will be given a place on the wait list for a kidney. What more appropriate Easter gift could I be given than this chance at life. As Jesus said, and so, too, may the surgeons, "I have come to give you life so that you may have it to the fullest."

Sunday, April 05, 2009

My Mother Knows Nothing About Me

Over the decades I have told a few friends that my mother doesn't listen to me and knows nothing about me. Of course, this seems like so much hyperbole. How could one's mom not know anything about her child? And it's not like she had a dozen kids; she only had two.

Plus, I have been the dutiful daughter and have remembered her on her birthday, Mother's Day, Easter, Christmas and Thanksgiving, have sent flowers to cheer her, and have called at least two or three times a week for my entire adult life. Certainly one would think she'd know a little something about a woman who has spent so much time and energy on her as I have. Even if I had been a neighbor or a coworker or someone who went to her church, you'd think she would have known something about me!

Last weekend my mother read aloud from her journal, as is now our custom. Before she started journaling, our visits were for the most part silent, as she gave only one-word answers to my questions, and she asked no questions in return. Now that she's journaling, she reads aloud from her journal, and I ask her questions about what she's written. This has improved our visits tremendously.

Last weekend she read what she had written about me. Her account was filled with inaccuracies. Actually, none of it was accurate. She said from the get-go that she knows nothing about me, and I told her this is remarkable, given that I lived with her for 18 years.

This is in contrast to what she read today about her long-time friend Marianne. She didn't know where or when I had graduated from college. She wrote that I received my bachelor's degree in Illinois when in fact I had only taken a few classes while living in Chicago. I graduated with my first bachelor's degree in 1984, three years after I had moved to California. She didn't know in what areas I had received my degrees. In contrast, she knew that Marianne had graduated in 1969 with a degree in sociology and had gone on to receive a master's degree in social work from the University of Wisconsin, Whitewater.

My mother did not know when or under what circumstances I had contracted diabetes, and it was obvious from what she wrote that she knows nothing about the disease that has shaped the last 37 years of my life. When I was a kid, she never attended a single doctor's appointment with me or read any book or pamphlet about the condition. She never once talked to me about my anger and depression about having a chronic disease. Yet she knew about Marianne's cancer in detail.

My mother did not know the name of my boyfriend of four years, the man who, by default, was the love of my life. And she didn't know that Mike had died in 2006. She wrote that Mike was a skiier, not a surfer. Now if you think this is just her forgetfulness or dementia, why then did she know about Marianne's sex life in detail? She knew that Marianne had not had sex until she was 29 and that her first affair with a married man was in Aruba on the beach. She even knew the exact year when Marianne tired of sex.

My mother remembered the names of the restaurants she and Marianne had frequented and the menu items they favored. She knew the first and last names of Marianne's coworkers and the streets on which she had lived. In contrast, she does not even know what I do for a living, even though I have worked at Cal State for more than 20 years.

And it's not just Marianne. She wrote accurately about my ex-husband's profession and about her sisters and brothers and her friend Julie.

Worst of all, she wrote that I had abandoned my son. I couldn't believe this! When Rod and I split up, we shared custody, and I chose to be a freelance writer and editor, primarily so that I could spend as much time as possible with my son, rather than away from him, commuting to a corporate job. So my mother is clueless even in regards to the bond I have always had with my son, perhaps the most significant aspect of my life.

I told her that she should continue to write, that writing is very good for maintaining her mental functions, that writing is the best thing she has done all year, but that she should stick to subjects she knows something about. For some reason, all the things I have ever said to my mother about my life have gone in one ear and out the other because, as she told me about five years ago, she is "just not interested."

I also told her that this is what makes caring for her so difficult. "It's not like we've ever had a relationship," I told her. "If we had had something when I was a child or if we had had something during my adult years, it would be different, this would be easier. But it's really hard for me sometimes to put so much time and energy into taking care of you when you were never there for me, even as a child, when you were never interested in anything about me."

To this she said nothing. I guess all I can say is that this is the stuff of a great short story.

As Aaron said, "I don't know why, but your mom has always had a block on you."

Wednesday, April 01, 2009

Mark Your Calendars--April 16, 1:30 p.m. PST

Yesterday I talked with Fe, the transplant coordinator. I said that waiting until August to have a consultation with UCLA was way too long to wait. Two kidney patients who were actors in "Who Lives?" had been on dialysis for only a short time before receiving transplants--five months for one and a year for the other. And here I wasn't even going to have a thumbs up or down for the wait list for six months. Was there anything she could do? I wondered.

Phone calls and emails went back and forth between Fe, Dr. Butman, and myself. And there must have been phone calls between them and UCLA. Then this morning I received a call from the transplant scheduling nurse. I've now got a consultation with the kidney-pancreas transplant surgeons on April 16 at 1:30.

This could very well be the most important meeting of my entire life. The meeting that decides whether I am a viable transplant candidate. So please keep that date in your prayers and in your good thoughts. Surround the doctors in white light. See them coming away with a very positive feeling about me and about my outcome post-transplant. See me getting my name on The List.

The appointment itself is certainly good news. Four months ahead of the original time. Things are moving. Thank you, thank you, thank you.

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About Me

Southern California, United States
Perhaps my friend Mark summed me up best when he called me "a mystical grammarian." I am quite a mix--otherworldly, ethereal and in touch with "the beyond," yet prone to being very precise and logical, when need be. Romantic in the big-canvas meaning of the word, I see the world as an adventure, as a love poem, as a realm of beauty and wonder.

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