Friday, October 31, 2008

Miles for Myeloma

"This Halloween, Dr. Rafat Abonour will forgo the candy and costume and instead lace up his running shoes in the name of research for multiple myeloma, a rare but fatal blood cancer."

Here's an inspiring story about an oncologist who, upon learning that there wasn't a big fundraiser for MM, decided to start one. For the fourth year in a row, I.U. oncologist Dr. Rafat Abonour will be bicycling and running a 120-mile trip from Indianapolis to Bloomington, Indiana, and back again, to raise money for Multiple Myeloma treatment. Cumulatively, he has raised over $700,000 and this year his grateful patients hope to help him reach the $1 million mark. Read the brief story here: Miles for Myeloma 2008

I hope next year there's a direct link for a donation. And speaking of next year...I'm thinking maybe I'll be one of the patients greeting him at the stadium.

Thursday, October 30, 2008


Yes, LaCootina loves a costume party! Let's go back 20+ years, to my brief stint as a corporate drone. I came as a Black Widow Spider to the company Halloween party, and was so impressed with a co-worker's crayon get-up that I made my own version a few years later. (The spider costume was homemade: extra arms were sewn into the sideseam of the leotard and strung to my wrists on each side with clear thread.) And at least once, cousin #1 took two of her children trick-or-treating, in adorable crayon costumes made by yours truly.

A few years later at a thrift shop, I found this large pink chiffon strapless number with rhinestones, and my next costume was inspired. With sparkly pink cats-eye glasses, my cardboard tiara and a bunch of silk roses, I became Miss South Dakota. (I don't know why I picked on South Dakota.) I wore this dress for many years, including the year that Becky G was a sexy Neanderthal.

Eventually I moved on to dressing my nieces instead of myself. Here are Supergirls 3 and 4 as Mary Poppins and Dorothy from the Wizard of Oz.

I can't resist adding this one. Yes, I finally found my prom pic WITH my goofball date, Steve. It only LOOKS like Halloween; remember, it was the 70s!

I wonder why I don't have any pics of me as a kid on Halloween? Probably because it usually looked like this (below) in South Bend on Halloween. It would be sleeting or snowing and we'd argue with mom about wearing a coat. "Mommmmm, then they can't see my costume!" But mom always won: either wear a coat or stay home.

And now I guess we've all moved past dressing up for Halloween. (Sigh.) But I still have the spider costumer and Miss South Dakota, in case I get invited to a costume party. And hell freezes over and and I'm that size again.

Wednesday, October 29, 2008

Fleurs du Jour

On the top step, we have some of the smaller zinnias with some donated lavender. The fuzzy stuff near the vase is also another kind of lavender. I've had it 5 years or so and I don't think it has ever flowered. But it's a pretty white fuzzy thing and it smells like clean linen. I've heard it called cotton lavender. I like to use it as a "filler."

The bottom step has more of the larger zinnias. How I'll miss you, my lovelies! It was a last-minute decision last spring to throw down some zinnia seeds so I was stuck with store seeds (Burpee, I think). This year, I'll plan ahead and order my Park's Pick zinnia seeds from Park's Seeds. The flowers are huge and much more prolific. I also threw some tarragon in this bouquet for greenery.

Tarragon always tries to take over the herb bed. Every year I hack it back to just a few stems... and then never use it except in bouquets. Everything else in the herb garden gets used: lemon thyme, oregano, chives, lemon balm and rosemary. But the tarragon and cotton lavender never end up in food.

I'll try to get a picture of my window box. Mom thoughtfully ditched my scrawny petunias and replaced them with beautiful pansies. (Everyone should have a window box: it's so wonderful to look out your window and have flowers right there.) They will also expire with the first hard frost.

Considering that Halloween is in a couple days, I guess it's time for me to get used to the idea. I was raised in the northern hinterlands, and even after 20 years here, I'm still amazed that I'm cutting flowers in October.

Crafty Girl

It's been a quiet week at Villa DeCay. The good news is that the nausea is down to a 5, or even a 4. But I had two days in a row of that can't-get-out-of-bed feeling, which was very discouraging. It was both fatigue and back pain, taking turns whoopin' my ass. I'm a little better today, which actually feels like a lot better, so I'm going to try and take advantage of it and get a few tasks done.

That includes finding my dining room table again. (It gets lost unless I really stay on top of bill-paying and filing.) And, now that Miss Molly is back home full time, I need to keep up with my hairy floors. Black dogs & wood floors makes for some mighty scary dust bunnies; more like dust elephants. Dust dinosaurs. I've already done a sink full of dishes, so if I get these two chores done, I will feel very accomplished.

I may even get back to a chore I started and abandoned: trying to get the crafts room in some sort of order. I've got a serious craft habit, and every time I decide to take on/learn a new craft, I feel compelled to go out and buy everything I could possibly need if I were going to pursue that craft full-time for the next 5 years. Recently, it's been decoupage, beaded jewelry, and decorating canvas totes. I've got piles and piles of STUFF for all of the above, so I bought yet another organizer thingy. I filled the bottom drawer with cross-stitch stuff. I haven't done any cross-stitch in at least 5 years, and I've already given away scads of thread, patterns, etc. This is just what I had left over! (I also gave away scads of yarn, scads of crafty paper, scads of craft books and craft scraps. But somehow, that stuff just keeps reproducing. Maybe it's osmosis.) The second drawer immediately filled with "miscellaneous," which frustrated me to the point of abandoning the project. I need to empty that second drawer into a bag for the time being, and try again.

Aren't there any 12-step programs for craftaholics? I can't be the only one...

Tuesday, October 28, 2008

R.I.P., Tony Hillerman

Novelist Tony Hillerman, 83, died Sunday in Albuquerque, NM.

I think I've read most of his Navajo Tribal Police mysteries, featuring Lt. Joe Leaphorn and Sgt. Jim Chee. Hillerman had a unique knack for lacing a page-turning mystery with Navajo culture and lore, and lyrical descriptions of the stark, beautiful landscape. He left a wonderful legacy in these novels. I'm sad there won't be any more.

The Mud, It's a-Slingin'

Just in the last week or so...

GOP Admits Plan to Use Foreclosure List to Challenge Voters (Michigan)

California Voters Duped into Registering as Republicans
Police Arrest Man in California Voter Fraud Case

Christian Right Escalates Attacks on Obama

McCain Volunteer Charged in Attack Hoax

Oh, sure, but what about all that voter fraud committed by ACORN?
"The only actual crime here is that Acorn managed to register some 1.3m low-income (read: Democratic-leaning) voters over the past two years. The rest is, pretty much, just made up."

Monday, October 27, 2008

Send These Little Piggies All The Way Home

Uses for $700 Billion Bailout are Ever Shifting

Banks to Use Gov't Funding for Lending, Dealmaking

Media Endorse $700 Billion Economic ‘Rescue’ reported on Sept. 29 that phone calls to congressional offices were running 100 to 1 against the bailout. Glenn Beck indelicately described the public’s attitude toward the legislation on Oct. 2, saying “America is pissed at this bailout.”

Still, reporters and anchors promoted the bailout with “doomsday scenarios.” ABC’s Bianna Golodryga painted a dire picture for “Good Morning America” viewers on Sept. 28. Citing “experts,” Golodryga warned “time is running out to save both [Wall Street and Main Street].” While she did quote opposition to the bailout, Golodryga undermined it with an immediate rebuttal: “But for traders who are in the thick of things, the bailout is essential.”

Why was the bailout “essential?” According to ABC’s Betsy Stark, experts said “something had to be done to keep Wall Street and Main Street from falling into the economic abyss.”

"Economic Abyss?" There's some hysterical hyperbole for you. Only the media -- and the congresspigs -- seemed so certain we were on the brink of an abyss. Talk about fanning the flames.
The bailout was a baaaad idea. It seemed like everyone and their dog was for it; with an impressive variety of justifications and excuses. But I told them not to do it; I knew before the ink was dry, the congresspigs would not be able to contain themselves.

And now the beneficiaries, the banks and financial institutions, are going to give themselves raises and bonuses, and maybe buy other banks, and there's not a damned thing you can do about it. "Other planned uses of the bailout money have lawmakers protesting, although it is only fair to note there is nothing in the law that they just wrote to prevent those uses."

As long as I'm ranting, please let's find a copy of the bill and make it a point to vote out of office every single piggy who added that $150 billion worth of pork to the bill. A "BAILOUT" bill, and the piggies still couldn't resist adding $150 Billion-with-a-B worth of PORK. Everyone of them deserves not only a pinkslip, but a jail term.

This is going to be like that #$@ idiotic war: MUCH too late, the men and women who voted for it are going to realize they made a horrible, career-ending mistake. Yeah, too bad you didn't grow a backbone or a conscience before the vote. Now it's clear that the bailout did nothing to "stabilize the markets," and because of the way it was written, the money will be squandered for purposes other than those for which it was intended.

Speaking of that #$@ idiotic war, even that hasn't cost us $700 billion...yet.

Sunday, October 26, 2008

Making Peace with the Intruder

Here's the thing: I guess I'm trying to use humor to help cope with cancer. With the idea of it, the reality of it, the treatment, the prognosis, and especially the pain.

I also have serious, thoughtful moments; for several reasons, those aren't the facets of my life I've chosen to share. I read several other MM blogs and am impressed with the variety and depth of others' coping skills and philosophies. It's strange that we may have nothing in common beyond this disease, but that makes for a very powerful connection. I feel they are all friends I haven't met yet. With his permission, here is an excerpt from "John Smith's" blog I found moving and thoughtful:

On the net, I follow several blogs of other individuals with cancer. To my virtual friends out there, Beth, Karen, Nancy, Cindy, Andre, Teresa, Margaret, Leslie, Don, and Susie, I also say, “Thank you.”

We comprise a remarkable geographic diversity stretching from the Northwest to the East Coast and across the Atlantic to Italy. Our differences notwithstanding, we share a common foe. We all dance around our fears, trying to find comfort with our unpredictable futures. Some employ self-deprecating humor in order to introduce their disease into the conversation. Their cheerful endurance of cancer’s chaos makes me laugh. I admire their humor even though cancer, for me, is more a mystery than a comedy.

Other writers detail their treatments and share lab results and side effects and symptoms so that readers can relate to the disease through the shared experience. Some crusade for a cure; they devote their pages to the latest clinical trials or published papers on possible remedies. Still others bluntly declare their hatred of cancer, referring to it as “the beast.” They are justifiably angry at the indignities that come with this fight.

Accordingly, the writers who I currently follow hold a special place in my day. I anticipate their unique perspectives. I collect from them clues to the questions posed by a chronic illness. First and foremost among these is how do you keep talking about it without inviting sympathy. Obviously, there are ways to do this and these blogger’s distinctive styles show me how. Cancer interrupted the momentum of our lives. Our musings proclaim we are not victims in this drama but protagonists asserting our value.

Some thrive following treatment, some tiptoe along with a stable but active disease, and others deal aggressively with a relapse. I consider their insights more valuable than those of my oncologist. I learn from their honesty. We acknowledge each other; we worry about one another, yet we keep our one-of-a-kind voices. We share our hopes and frustrations. Round and round we go with tales of living the life, trying to make peace with this intruder.
Thanks, John, for sharing this, and for being part of my invisible network of support. Getting to know my allies has been one of the surprise bonuses of cancer. "It's the club no one wants to join - but membership has its privileges."

The World is a Box

by Sophie Hannah

My heart is a box of affection.
My head is a box of ideas.
My room is a box of protection.
My past is a box full of years.

The future's a box full of after.
An egg is a box full of yolk.
My life is a box full of laughter
And the world is a box full of folk.

Saturday, October 25, 2008

Five Great Things About Being Bald

The Great Baldini would like me to clarify that it is not just the baldness that makes her scary. It is the baldness in combination with a too-much-time- indoors sallow complexion, a fairly dramatic weight loss, and the ever-present bags under the eyes. I think she's more Uncle Fester than Sinead O'Connor. And yet, in the interest of Positive Thinking, I would like to offer...

Five Great Things about Being Bald

  1. I'm saving lots of money not needing haircuts
  2. I'm saving lots of time not styling my hair
  3. My bangs are never too long...or too short
  4. I'm never at that horrible "in between haircuts" stage
  5. I'm sure there's a fifth great thing; I just haven't thought of it yet.

Thursday, October 23, 2008

The Great Baldini

It's fall (autumn, if you prefer)... and I almost missed it. Yes, I've been busy, but I hate to think I might have missed my favorite season, just by being distracted and oblivious.

It's always a relief to me when the withering, blistering heat of summer finally begins to fade and is replaced by the coolness of fall. Fresh air! Open the windows again, at least during the day. Enjoy the crispness of seasonal apples. Get out your favorite sweaters. It's the only time I appreciate the strange combination of orange and blue: the bright maple trees against a clear, sunny sky.

Is there any one thing about fall you love? Football? Halloween? Pumpkin pie?

I'm going to have to get a few more hats; I can already tell that these bandannas are not going to keep my head warm enough. I have to figure out, though, how to take a hat off while keeping a bandanna on. When I am uncovered (as I usually am at home) a glance in the mirror, or even a reflection in a window, really startles me. I am still not used to my big old bald head.

My stubble continues to fall out, so it's going to be a long time before I grow enough hair to cover it. I've decided that weird bald lady in the mirror is just a crazy interloper who's crashing here for awhile: the Great Baldini! Thank goodness Portitia is gone; the Great Baldini would have kicked her ass.

Start with a stick of buttah...

Yesterday Chris kindly went with me for my first appointment with Dr. A. since the transplant. I explained to her that I'm working on a New Attitude with Dr. A. The Old Aunt Crankypants would have sulked long and loud over the fact that the only time I've heard from him in over 8 weeks was when he called the day I got the blood clot, and seemed to chastise me for making an issue of it at the hospital. (Or could it be that I was completely exhausted from the day, and the pain, and over-reacted?'s possible.) He never contacted me the whole time I was in the hospital. Not once.

The New Aunt Crankypants finally sees that this is not a personal relationship. It is NOT. I can wish that it were, I can believe that it should be, but it is NOT. His "inner circle" is family and friends. Beyond that, maybe a few research associates. And far beyond that are his 250-300 patients, of which I am one. The problem has not been in his behavior, but in my perception. So I'm working on Getting Over It, and accepting that our relationship is more mechanic-to-engine than traditional doctor-to-patient.

The appointment itself was very brief, as expected, and I was told I am doing quite well, overall. I didn't get any direct answers to my two big questions. One was, how long will this wretched nausea continue ("could be awhile") and the other was about some troubling bone pain I'm having; the answer was basically the same.

After a brief chat with Supernurse G, Chris & I head over to Infusion to get my monthly hit of a bone-strengthening drug. The appointment starts with an argument with the nurse over where the I.V. will go. Why are we arguing about this? I start out with "here's where I want the I.V., and here's why," and as far as I'm concerned, that should be the end of it. I have valid reasons, I'm not just being contrary... but it takes five minutes for her to begrudgingly concede. The I.V. goes in and I turn the TV on. Chris has pulled up a chair next to me and we are going to enjoy some Food Network! (Neither of us has full service cable at home.) We watch a little Giada De Laurentis and some Barefoot Contessa...mmmm! The I.V. should be done by now... shouldn't it?

Well, oopsy, turns out Nurse I Know Everything has forgotten to "open" the line and I have been sitting there for 30+ minutes getting absolutely nothing. She was very apologetic, but I was pissed. Thank you, Chris, for coming with me, for being so patient, and especially for being nice and kind and forgiving to the nurse when I was incapable of it.

So we got to watch the rest of the Barefoot Contessa and most of Paula Deen. And if you've ever seen Paula Deen, you know that everything starts with a stick of buttah. She has the most charming southern accent, and, I think, the prettiest, sexiest silver hair. I was a little wrung out, but almost civil, by the time the I.V. was finally done.

The other news here is that my wonderful friends Kerry & Mary Ann have been helping me out with some much-needed pet therapy. They drop Molly off in the morning and pick her up each afternoon, so we have lots of snuggle time. But they take her back for meals, a nice long walk, and some playtime with her buddy Gracie. I am really enjoying having her; probably next week, she'll be here full time. Until then, it's the best of both worlds, and she still gets some exercise.

I'm trying to increase my daily walks, too. Just watching Paula Deen for a half hour can pack on a couple of pounds.

Wednesday, October 22, 2008

Let Me Just Say "Ouch"

There are at least three actresses who should never play Jewish: Candace Bergen, Helen Hunt, and Jody Foster. They are all good-to-great actresses, but they have such patrician, Wasp-y features, I just don’t think they can pull it off. (Yes, I do know there are Jews in Scandinavia.) So I was surprised to see Helen Hunt not only play Jewish, but very Jewish, in “Then She Found Me.” Let me just say, OUCH.

Hunt took a funny, charming book and turned it into a painful, slow, angst-filled movie. Her character is a late-married school teacher. In a very brief time span, she marries, loses her adoptive mother, is left by her husband, falls hard for a dysfunctional divorced dad, and is then "discovered" by her birth mother. I was mystified by the choice of Salman Rushdie as the ob/gyn. Was it a "cameo?" Was it supposed to be funny? Colin Firth is an erudite, sophisticated actor; making him look like an unmade bed throughout the film was a little silly. We get it, he's troubled.

Only Bette Midler’s performance as the birth mother saved this from being a total stink bomb. But in the book, her character was a loud, brassy, larger-than-life talk show host who was completely oblivious to the massive impact her wake has on those around her (from whence much of the funniness came); in the film, Bette had it turned way, way down.

Every other review I read agreed that Hunt's painful thinness was distracting. The former Pretty Blond looks like five miles of bad road. When your skull shows through your face, it’s time to eat a sandwich, girl. It’s a petty thing to pick on, but in every scene, her cadaverous figure was emphasized by either a deep v-neck dress or a tiny tank top – which also didn’t jive with the character’s supposed religiousness. And here's a little tip for future efforts: the score also affects with whether a scene reads as comedy or not. For a comedy, the whole movie had a pretty somber score.

I’m probably taking this hard because for years, Elinor Lipman has been one of my favorite authors. Her books are funny. (This was her first novel.) Charming, quirky, addictive and funny. Although the script strays a lot from the book, I read somewhere that Ms. Lipman has only nice things to say about the movie. In fact, here’s a quote: The book is the book and the movie is its own entity. This I internalized early on when a wise friend told me, "Think of it as a movie based on characters suggested by the novel." I do.

Well, whaddya think she’s going to say? Especially if she ever wants another shot at seeing one of her books turned into a movie?

Sandra Bullock, Jeanene Garafolo, Natalie Portman (an actual Jew!)... I can come up with a half-dozen actresses who could have saved this film and also made it an actual comedy. Helen, work on getting back that comedic timing (you had it in "Mad About You,"), stay on this side of the camera for awhile, and for dog's sake, eat something.
It’s Not Just Me:
Mirror.UK - review
Total Film - review
Daily Mail - Helen Hunt’s Heavy Hand Kills Comedy

Tuesday, October 21, 2008

Are They Psychic?

or avid blog readers? The Hoodies have really stepped up. Last night I enjoyed some delicious homemade vegetable soup courtesy of Bill & Judy. Almost everything came from Judy's garden. They even included an extra serving for the freezer. I'm also enjoying a savory beef stew from Nick & Mary Ann. That's a rare treat for this "situational vegetarian." Again, an extra bowl for the freezer, to be enjoyed when Indian Summer is officially over.

Speaking of...yesterday, Susan and John and nephew (Alex?) came over and spent much of the glorious afternoon raking my leaves. It was wonderful to get the first batch bagged before the first rain. Everyone knows how much fun raking wet leaves is...not! And Gary & Kelly dropped off a movie for me yesterday; I haven't restarted my Netflix yet and was having a movie Jones.

I'm so humbled, realizing now that I've had some practice asking for and accepting help...that I can't think of a single time when I asked for help and was turned down. Please, give all yourselves a big pat on the back, from me.

Monday, October 20, 2008

In Other Words...

Now, put a nametag on the robber that says "Hello, My Name is Congress"
and you've got a more accurate image.
(Copyright Times-Picayune)

Stir Crazy – Behind the Scenes

The Stir Crazy Cooking Club (or Foodies) has been quietly working behind the scenes. This summer, they set up a table at a neighborhood event and sold craft items. Yesterday, they had a table at a craft fair, all to benefit me and my dwindling resources.

The first edition of the cookbooks has almost completely sold out, and a second printing of 40 cookbooks has been ordered. This will probably be the last printing; if you want some for birthday/holiday gifts, order now.

Over the years, the Stir Crazy girls have enjoyed just about every food "theme" you can imagine, from ethnic groups to "food on a stick" and everything in between. And a perennial favorite has always been Soup Night. We'd bring 4-5 soups or stews, plus salad and dessert. White chicken chili. Baked potato soup. Thai Shrimp & Chicken Soup. Butternut squash soup. Lemon chicken soup. Mmmmm.

Knowing that my pals will be visiting regularly, perhaps with a cup or two of hearty soup, is almost enough to make me look forward to colder weather.

Sunday, October 19, 2008

Simple Pleasures

Simple pleasures are easier to recognize and appreciate as I get older. I'm no longer skipping or stumbling blithely through life, focused on the future while the present slips through my fingers. Right now, I'm appreciating, I'm acknowledging, I'm savoring...

Hot Baths! It's so easy to take this for granted. I was first reminded of this Simple Pleasure about a decade ago. Bro #2 lived with me briefly, and put his amazing mechanical skills to work, updating my only bathroom. Home remodeling projects always cost more and take longer than you think, and this was no exception. We were without a full bath for a month or so. I have a toilet upstairs in the attic, so at least we had another throne in the house. But for a month, I was bathing/showering either at my sister's or my neighbor's house. I thought a lot about homeless people: keeping themselves clean must be one of their biggest challenges. Imagine for a moment that you don't have access to a shower or tub: how will this change your life? Your self-image?

I thought about it again this morning. I could not shower for the entire month Portitia was with me; it was strictly "horse baths" at the sink. When I came home from the hospital, sans port, I enjoyed hot showers, sitting on a little footstool because I am too wobbly to stand for that long.

And this morning, I luxuriated in a hot bath. Those 2 weeks in the hospital dried my skin like I can't believe, so I added a few drops of baby oil to the bathwater. When I got out, I slathered on some Golden Apple Body Butter, a gift from my friend Sara. Heavenly.

I would have liked it scalding, but instinct told me that was probably a no-no. I recently checked my Stem Cell Transplant Handbook, and found out I've been breaking a lot of rules. For example, yesterday Chris toted me to our local Farmer's Market. I forgot to bring a mask; oopsy, that was breaking Rule #1!

I should probably stop checking the Handbook.

Cutest Baby Ever?

My folks will tell you that all the kids in our family – and all our cousins, and all the grandkids – were exactly equally gorgeous babies. They have to say that: it's the law.

But it's not true. Bro #2, and Cousin #3 (together, below right), were the cutest babies and toddlers, not just in our family, but probably in the world.

I was only mildly jealous of Bro #2, as opposed to the soul-eating jealousy I experienced with Sis. First, he was just another boy; second, I was only three years old when he was born. And third, as you can see, he was so ridiculously adorable...

Friday, October 17, 2008

Go See...

Teachers open the door; you enter by yourself... and more useful Chinese proverbs.
Eight Amazing Holes
Ahh, Grasshoppah: Differences between Eastern & Western cultures.
Some very obvious, some very subtle...

Big C Update

I miss my mommy & daddy! Well, with much regret, I let them go home yesterday. They'd put in a week on the front lines, and since this was their third (fourth?) Transplant Trip, including the harvesting, it was more than I had any right to expect. And Mom, Dad: I'm grateful for every minute.

I'm also grateful to my pals, who are already calling and emailing, checking in on me. I don't think I'll be driving for awhile so even though my needs are minimal, it's nice to know help is always available.

I'm doing pretty well, all things considered. I continue to be plagued by nausea and fatigue. I rediscovered some accupressure wrist bands I bought a long time ago. These happen to be "the original Sea-Band" but I'm sure there are generics that work just as well. Theres a sort of little button on each, and you position that in the middle of your inside wrist, sort of where your watchband buckle would be. I can only wear them for 3-4 hours at a stretch, but they really do provide good relief from the nausea. I'm alternating between the bands and the "lights out!" nausea Rx, which knocks me out for 2-3 hours.

The fatigue is going to continue, probably for 6-12 months, so I'm trying to find that balancing point between really making an effort to regain some stamina, and overdoing it, which would set me back. Just forcing myself to get up, get dressed, make my bed, all help me feel like I'm making progress, but there are some days when I just can't do it.

Follicle Follies: I guess I'm not done losing hair. Although it was shaved down to 1/4" or less, my "stubble" continues to fall out, so I'm in for a long bald spell, I guess. I think I had better start preparing myself to lose my eyebrows and eyelashes, too.

I received my Absentee Ballot yesterday! I have not missed voting since I turned 18 and I surely wasn't going to miss voting in this presidential election. Ironically, Cousin Sarah is in town today. I would'a gone to see her, but doggone it, my Sunday overalls are in the wash!

Once again, I will be voting for the anti-idiot platform. America, if you break my heart a third time, I don't know what I'll do.

Thursday, October 16, 2008

Watchin’ ’n Laughin’ ’n Playin’ the Drinkin’ Game

In case you just can't get enough of it, "Anon:"

Tina Fey as Sarah Palin

Race for the Indecisive ...or is it a Walk?

Well, the one thing I know after watching yet another "debate" is that people will see what they want to see and hear what they want to hear.

I can tell you that I am sick to death of Joe the Plumber, whom I've never met, and who was turned into Instant Cliché Fodder last night by having his name invoked by McCain in every answer.

I'm stymied by those who still claim to be undecided.

WHO ARE THESE PEOPLE? And what, exactly, is wrong with their minds? Is this an official psychiatric diagnosis? "Static Traumatic Indecisiveness."

Would you rather have a hamburger or a sharp stick in the eye?
Hmm.... I'm going to need some time to think about that.

Would you rather have one of your toes cut off, or a dozen roses?
Hmm... Can I pick which toe?

Sunday, October 12, 2008

Big C Update

Home again, home again, jiggity jog. Chris took on the Herculean task of packing me up, toting me home, and then helping me settle in. (She has also helped me with daily Rx charts; who knows what kind of shape I'd be in without these checklists.) Sis babysat me the next day; I was in better shape than I'd expected, but still felt comforted that someone was close by. And making their fourth (fifth?) return trip, my folks came on Friday.

With their help, I am slooowly putting my life & house back together. That includes recognizing and respecting the limits of my energy. (I made it around the block yesterday, but only because I didn't want Mom to have to carry me the last half.) The only problem I've had is that my sinuses have been on overdrive for about 6 days. My eyes and nose have been running like leaky faucets; I have worked my way through the extra large box of Puffs con Lotion, and I'm slathering my poor red nose with Vaseline. But I seem to have escaped all the really icky side effects. So far.

I don't have my baby, Miss Molly, yet. I'm going to wait til I feel a little stronger to bring her home. But I sure miss her more here at the house than I did at the hospital.

I'm hoping to hold a little energy in reserve for a discussion with my good friends at Social Security. Now they are dangling what they think is a carrot: an acknowledgment of my disability and a willingness to start payments... but the number they offered is about 25% less than the amount to which I'm entitled. I think this is their latest volley in The Waiting Game. Between my orneriness and my attorney's knowledge, I believe we are going to kick some SS booty, but I can tell you -- 10 months later -- that the wheels grind slowly.

Doesn't matter. Those bastards are going to name a wing after me by the time I'm done with them.

Selecting A Reader

by Ted Kooser

First, I would have her be beautiful,
and walking carefully up on my poetry
at the loneliest moment of an afternoon,
her hair still damp at the neck
from washing it. She should be wearing
a raincoat, an old one, dirty
from not having money enough for the cleaners.
She will take out her glasses, and there
in the bookstore, she will thumb
over my poems, then put the book back
up on its shelf. She will say to herself,
“For that kind of money, I can get
my raincoat cleaned.” And she will.

Wednesday, October 8, 2008

Adieu, Portitia!

Sunday they told me I would be sprung on Monday. Not only was that less than the expected 3-4 weeks, it wasn't even 2 weeks after my transplant! And my poor parents had just returned to their home city that morning. So I spent most of Sunday sobbing, bereft. The other thing that happened Sunday was that I surrendered my hair: I knew for several days that it was falling out in clumps. Rather than wait til I looked like a Sesame Street fugitive, I asked the nurses to buzz me. By Sunday night, I was splotchy and puffy-faced, bald and swollen-eyed. I looked like the ugliest baby eaglet on the planet. (Now that some of the puffiness has abated, I'm probably the third or maybe even fourth ugliest baby eaglet.)

Monday morning they came and told me I had a one-day reprieve. They weren't going to just kick me off a moving train. Besides, I still had to get Portitia removed. Good timing: the fatigue everyone talked about -- the fatigue that will forever give that word a new meaning -- hit me Monday and it was too taxing to simply sit up in bed. Now, because the Big Plan was to take out Portitia on Tuesday, I was also ordered "NPO" or whatever it is that means nothing to eat or drink after midnight. I survive Monday, barely able to get to the bathroom and back.

Tuesday, I was waiting waiting waiting to go visit the IR Pricks. And I knew exactly what was going on. I had once again dared to anger the gods by requesting anesthesia for the procedure, so they were going to teach me a lesson by making me wait wait wait all day. By 6:30 pm, I surrendered. I just didn't have the strength to fight them any more. And POOF! Within minutes, I was transported down to IR and prepped for removal.

Last problem: they wanted to take it out without even using a LOCAL!! "Oh, gosh, it stings and hurts more than if you actually let us just yank it out." "NO!" I roared "I WANT A LOCAL!" So she gave me a local, all right, and it stung like @#!!, and then... she didn't even wait five SECONDS before she started tugging. "WAIT, WAIT! Give it a few seconds to work!!" "Oh, it won't make any difference, you'll still feel the pressure." More than anything in the world, I wanted to be one of those people who can puke on command, and hurl all over her. She tried to make nice with me afterwards "That wasn't so bad, was it?" "How many central line catheters have you had YANKED out?" I snarled.

I never would have guessed it, but I think those nurses in transplant class were right: the IR Pricks just aren't that careful, and they certainly aren't very caring or compassionate. I don't know if they see the different between a human chest and that little plastic tub.

Let it go. Ohhhhmmm. I want to emphasize that while I have elaborated on a few bad/difficult experiences, for the most part, I have received outstanding care here, especially from the nurses. This is such a physically and emotionally draining job; it's easy to forget that they also have spouses and children and pets and whole lives outside of this little sphere, but when they are here, they are 100% patient-focused.

I will soon start getting dressed and trying to pack a bit. My ever-helpful friend Chris will help me today. Sis is taking the day off tomorrow, and the folks will be back on Friday. I'm hopeful that, by the end of their visit, I will be able to manage on my own -- heat up something to eat, manage my daily meds, snipe back at snarky comments. Just the basics.

Saturday, October 4, 2008

A Five-Foot Line

Still lollygagging at the bottom here. I don't think the numbers yet warrant a designation of "engraftment," so I'll just have to try harder. Two funny stories to share, though. And by that, by now, you know I mean unfunny.

Swallowing has become very difficult once again, so many of my medications have been switched from pills to IV fluids. With about eight bags of various medications plus my best friend, Mr. Morphine Pump, my IV pole is starting to look Hydra-esque. And to actually leave the room, I need to suit up in gown, gloves, and mask.

That's a long-winded way of saying it's a very big deal to leave my room. And yet, we're not supposed to lay in bed all day if we can possibly help it. I remembered from our Transplant Class that the unit has several exercycles, so I requested an exercycle yesterday. It finally arrived...and it was broken.

I sent it back with an explanation of what was wrong. And today I tried to find the other elusive exercycle. After checking nearly every room, my nurse realized the only "other" exercycle was the same one... and it was still broken. Very funny, eh?

For the most part, nursing care here is outstanding; in fact, it is that quality of care that really makes it apparent when someone's skills aren't up to snuff. A couple days ago, there were several incidents during Nurse Dingaling's 8-hour shift that put my survival instinct into High Alert mode. Twice, she wheeled in the little "vitals" cart, yakked for 10-15 minutes, and started to leave until I reminded her she had not gotten my temperature & bp. Oh, golly, both times she just laughed and laughed! It's hilarious, isn't it? (What else is she forgetting?)

I have not gone through this horrendous ordeal only to be done in by some chatty dumbbell. Thankfully, however, it is not her woeful nursing skills at the heart of this anecdote, but her woeful interpersonal skills.

I was detangling my seven+ feet of IV tubing for a trip to the restroom while Nurse D was changing the sheets. "It's a good thing you have those long tubes," she begins, as if I had complained about them. "I just heard about a woman who had a five-foot line. Someone stepped on it and yanked the catheter clean out of her chest!"

Now, Nurse Dingaling is a "floater" so she doesn't even know I've already had horrible problems with my catheter and ended up having it replaced. But that's not even relevant, is it? Why would any nurse tell any patient that story??? And I finally managed to say, "Why on earth would you tell me that?" "Oh, honey!" she cackles, "I didn't mean it would happen to you; you've got the extra-long tubing!" And she laughs uproariously at... what?... as I watch my tiny point sail far, far above her head.

I stare at her, dumbfounded, wondering just how many "Is it me?" moments I get before my brain just explodes.

Against It? You Betcha! ...but not...

There will be plenty of nitpicking on both sides about factual errors large and small incurred in the vice presidential debates on Thursday. But the one that really burns my cookies is Cousin Sarah's claim that she led the charge to divest the Alaska Fund of investments in the Sudan, because of their human rights atrocities. Well, gosh darn it, Sarah, turns out you not only didn't try to get the Alaska Fund to divest, but "lack of support from the Palin administration actually helped kill the measure."

Yeah, Sarah, turns out that claimin' to be involved with human rights is different from actually doin' it.

Record Refutes Palin's Sudan Claim

Thursday, October 2, 2008

Caribou Barbie Debates

Well, I'm a'waitin fer the big showdown between Grandpa Joe and Caribou Barbie. Ironic that in order for her to be considered a rousing success, all Sarah Palin has to do is avoid saying anything really horrible or stupid.

She has stumbled publicly several times, launching into long, wandering tangents that never reached a point or conclusion. Here's a little tip, Sarah: If you don't know, say "Well, gosh, I don't know."

Okey doke, then, let 'er rip!

Crow at the Prom

Who in the hell is that saucy teenager in the slinky red dress and recycled squinty-eyed boyfriend?

During the summer before starting high school, I met Steve Z at an inter-city religious youth group weekend event. We had each already peeled away from our city delegations and gone cruising for trouble.

Steve came from Detroit. He was one of 7 kids - 6 boys and 1 girl. As we got to know each other a bit better, I also developed mad crushes on at least two of his brothers. I don’t think I ever “seriously” dated anyone in my hometown. Steve was a very good sport about being imported once a year or so to escort me to some youth group
wingding or Junior Prom.

I was perpetually the rebel without a clue. Most days were spent in patched-on-patches pegleg jeans from Salvation Army (at the height of the bellbottom craze) and either homemade blouses or reworked vintage blouses. It would be fair to say I had a unique style, and even in a school of 2,000 or so students, I could not recede completely.

So every once in a while, just to keep folks guessing, I would deign to attend a school function, usually importing Steve for the occasion.

Here I am(far left) in a saucy black & white houndstooth print dress; yes, talk about daring! A mile from mod-a-go-go. I dressed it up with a red cloche and a big black belt that featured a buckle covered by a big red suede apple. Could ya just die? Who's too cool for words?

And's almost too much to believe but here's the proof (left): surrounded by a sea of pastel flounces, I wore black to my spring prom. I don't know why Steve isn't in the pics; I'm sure he was my date to both events.

Wednesday, October 1, 2008

Bottom's Holding

Two new events today to break the monotony. First, I have just enough mucositis that it's becoming very difficult to swallow pills, so most of my meds are going in via IV. I think at one point I had 8 or 9 bags feeding into the two lines. Very tricky which drugs can piggyback with which. I'm glad Nurse Jessie is on duty today; she is very focused, undistracted.

The second event was a couple of laps around the unit. I haven't left the room in several days, but now that I'm (still) at zero, I have to "suit up" to leave the sterile confines of my room. This just entails donning a gown, gloves, and a sort of super-mask. My IV pole unplugs, so I got to take it along. As I toddled down the hall, I was trying to come up with a storyline for the world's slowest superhero. "It's a turtle! it's a slug! No, it's SnailGirl!" (What are my superpowers? Able to cross a room undetected?) On my third lap -- yes, three, count em! -- I saw a similarly masked and gowned gentleman taking his IV pole for a walk, too. I thought of challenging him to a race (a hobble-a-thon), but that just didn't seem cricket.

There is a new nurse on duty tonight and I can already tell she's got me beat for SnailGirl. Let us all hope that no one has a true emergency on this chick's shift.