Tuesday, December 29, 2009

I hope you all had a wonderful holiday with family and friends. Bro 1 came for a visit last week, just in time to take me to chemo. The first 48 hrs. after chemo also include the steroid/diabetes joyride. What a trooper; he toughed it out and then graciously stayed 4-5 days, reading, watching tv, helping around the house, and trying to find something I could stand to eat. I'm sure he was bored out of his gourd but I suspect his primary mission was to make sure I actually got the chemo. I'm always on the verge of quitting. I wasn't able to partake this year, but he still shared with Sis and Supergirl #4 our ancient Christmas tradition of Chinese food and a movie. He made his escape shortly after our first real wallop of winter weather. Thanks, Bro. I don't know how I would have managed without your help.

Tuesday, December 22, 2009

"Do You Have To Go?"

Clinging to the belief that fresh air, even sub-zero fresh air, was vital to childhood development, our parents regularly stuffed us into layers and layers of socks, pants and sweaters, topped with massive snowsuits, scarves, mittens and hats, in order to be sent outside to suck in some of that life-sustaining, lung-paralyzing fresh air.

You could bet your last dollar that as the final layers were tied, zipped and snapped into place, that was the exact moment that our bladders demanded immediate attention. Every. Single. Time. This, despite the fact that Every. Single. Time., the ritual began with, "Do you have to go potty?" and our indignant, insistent response, "No!" So Phase Two of Playing Outside was getting completely undressed (all 27 layers), peeing, and getting dressed again. It was like a swimmer's false start. Then we were once again sent outside "to play."

Play? Play?? In our gigantic, pre-Gortex snowsuits, we couldn't bend at the knees or elbows (as is obvious in these pictures) so "play" was usually limited to throwing a few snowballs. Just a few minutes later, our little windburned faces covered with frozen snot, we were begging to be let back inside. Winter fun. Good times.

Monday, December 21, 2009

Migratory Patterns

Turns out I'm still on the flight path of the Great Baldini. Expect a return visit this afternoon, and an extended stay of several months.

Friday, December 18, 2009

The gray & white tornadoes are at it again. Ma & Pa K. insisted on coming for a quick visit and I just wasn't inclined to argue about it. Wednesday's blood tests showed that I was "borderline." I felt puny enough to cross the border; yesterday I had another transfusion -- only one pint this time. I'm slowly reviving, but M&P are rarin' to go, so germs and spideys: beware. They are taking yet another trunkload o' crap to Goodwill, and then probably buying more cleaning supplies on the return trip.

Further evidence of their spectacular wonderfulness: Mom baked extra cookies so I would be able to give some holiday goodies to the 'hoodies. How super cool is that?

I have managed to delay the next D-day (or C-day) by a week. Either they forgot me or the schedules were already too booked up, but I'm not scheduled for poison until Dec. 23. Not saying I've committed to it (yet)... But holy mother of You Know Who, that's some mighty crappy timing, isn't it? Good thing it's not one of my holidays. I'm trying to get psyched for Festivus, but I'll only be a spectator at the Feats of Strength. Goddess knows, I don't need to participate in any Airing of Grievances.

Tuesday, December 15, 2009

Cinematic Head-Scratchers

Here are two movies that have haunted me since I watched them.

My Blueberry Nights could also have been titled How Not To Direct a Movie. There was a pretty good story with poignant acting, particularly by the star, Norah Jones, in a sweetly understated performance. Jude Law and Natalie Portman were both entertaining but odd choices. There was a breezy, hip soundtrack, an element of a "road trip" picture as this waitress struggles to leave her broken heart behind... and yet this stunk like a month-old mackerel. Every cheesy, "artsy" cinematic ploy -- jerky camera, blurry picture, unseen speakers, is employed ad nauseum, making the movie look more like a high school video project than a "major motion picture." At best, the director was illustrating his terminal hipness; this was just another strange, alienating homage d'ego that divides us into "I Get It" and "I'm Pretending I Get It."

Osama was a grim, heartbreaking story that qualifies as a head-scratcher only because I was left wondering, "What now?" The title does not refer to Osama bin Laden, but to the name taken by a young girl who tries to pass as a boy in order to find work. The Amazon blurb:

The first movie produced by Afghanistan filmmakers after the fall of the Taliban, Osama is a searing portrait of life under the oppressive fundamentalist regime. Because women are not allowed to work, a widow disguises her young daughter (Marina Golbahari) as a boy so they won't starve to death. Simply walking the streets is frightening enough, but when the disguised girl is rounded up with all the boys in the town for religious training, her peril becomes absolutely harrowing. Golbahari's face--beautiful but taut with terror--is riveting. The movie captures both her plight and the miseries of daily life in spare, vivid images.
Said one Amazon reviewer:
The non-professional child actors are superb, their abilities are engaging, probably because they are actually so close to the reality, and are, in truth, performing an act of actual courage. Considering the precariousness of the liberation of Afghanistan, you'd have to say the same thing about everyone else involved in the production, as well. The Taliban and al Qaeda are, after all, still there, roaming, threatening, trying to take over again...
This Golden Globe winner was inspired by a newspaper account read by director Siddiq Barmak. A fascinating interview with him is included in the Bonus Features. The film seemed ploddingly slow at times; I had to remind myself this was not an action/adventure film but more of a cultural saga. It's tempting to be completely dismissive of this heinous regime but this film is a stark reminder of the innocent humans who are trapped, suffering, oppressed and terrorized by it. The ending is frustratingly inconclusive... so is the war.

Thursday, December 10, 2009

Yesterday's Thrill

As dramatic as yesterday was, how is it possible that I missed the actual Thrill of the Day? Chalk it up to lack of white blood cells...and yes, brain cells, too. At the end of that drama-filled day, I crawled into bed around 11:30pm and happened to glance up. There on the wall, just past my headboard, was a spider the size of Monaco. (It wasn't this exact Brazilian Wandering Spider; although mine was similar, its antenna were at least 2" long.) It exceeded my Crunch Factor by about 3.5.

If it had been earlier, I would have called Chris. She would have come over, carried it outside, knit a nest, tucked it in and sung it a lullabye. If it had been smaller, I would have just toggled my Denial Switch. But... I could not sleep with that beast roving so close to my head!

So I sucked it up: crawled out of bed, grabbed the nearest shoe, and without giving myself a nanosecond to reconsider, I slammed that sucker with more force that I knew I had. SPLOOCH! If this is a harbinger of this winter, there is great cause for concern. Meanwhile, with the help of two shovels and a backhoe, I disposed of the remains.


Two Pints Low

Well, Wacky Wednesday was aptly named this week. I went to the northside infusatorium (once again, Sis at the wheel) for garden variety blood labs: CBC, etc. Abridged version: Some nurses ARE complete idiots. I had one Rx to fill on the way home, and everyone and their dog was lined up at the pharmacy. It turned out to be marathon but we finally got the Rx and headed home. I gave Sis a grocery list - even a short trip was now well beyond my stamina limits. Just as I was falling, face down, onto the sofa, I saw the message light blinking. Damn!

It was Supernurse G calling with the blood test results of just a couple hours earlier. She was speaking in a voice I'd never heard before. "We need you to come downtown right now and get a transfusion. It really can't wait until tomorrow. If your sister can't bring you, you need to get in a cab. Be very careful, take your time. (repeated 2-3 times) Please call me as soon as you get this message!"

Since I'd just dispatched Sis, I called Molly's godparents, and Mary Ann was at my door in a matter of minutes. I thought to grab a piece of string cheese (the object of the game is always to avoid hospital food) but forgot my water bottle: a clear sign of my total mental breakdown. I managed to get there at 12:30pm but still didn't get done until 5:45. That was platelets, a little saline, and two units of my radiated super blood. Yum-O!

Incredibly, my numbers were even worse than before the previous transfusion, something I -- and the nurse -- should have seen coming. It was a whole lot of drama, mostly unnecessary because even now I hesitate to argue with medical personnel. You think I'd have learned that lesson by now, wouldn't you?

Tuesday, December 8, 2009

Sail On, Silver Girrrrrl

I spent much of my early teen years in a space under the basement stairs. It was about the size of a coffin; I was willing to go that far for a smidgen of privacy. In that tiny space, I had just enough room for a sleeping bag, pillow, and record player. I played Simon & Garfunkel's Bridge Over Troubled Waters, over and over and over, until I'm sure everyone nearby was ready to slash their wrists. It was my Adolescent Angst Anthem.

Tonight, flipping through the channels, I was startled to come upon Josh Groban singing my anthem on PBS! As if that didn't send my endorphins into overdrive, suddenly Brian McKnight joined him onstage. Perhaps only McKnight's flubbing of the lyrics saved me from a six dollar sobfest. It was much, much too powerful for mere human ears (and hearts) to absorb. Groban has the sort of voice that has such a depth and resonance, you'd have to be made of stone not to react, especially to such an emotional song. (And keep in mind: no steroids for a week.)

Groban then launched into his very own Angst Anthem, You Raise Me Up. Again, that alone would have tested the limits of endurance when suddenly a very large black choir BURST into song behind him! Oh my gosh - was he trying to kill us? There ought to be some kind of weepymeter to test these songs on before they unleash them on an unsuspecting public. At least have one of those banners running across the bottom of the screen to warn us: "Crybaby Alert!  Crybaby Alert!"

Monday, December 7, 2009

Four Thumbs Up

Right now I have sleeping pill nights, and no sleep nights. This is one of the latter so I thought I'd offer a few movie reviews.

First, My Life in Ruins. It's My Big Fat Greek Wedding all over again, this time in Greece, without the wedding but with enough eye candy to keep me distracted. The hero starts out looking like a muppet, but cleans up quite nicely!

Next, King Baby -- an hour of stand-up  by Jim Gaffigan. Either you love him or you hate him; I love him.

The Soloist with Robert Downey Jr. and Jamie Foxx. Based on a true story about a friendship between a newspaper reporter and a now-homeless former Julliard student, the movie resists a simple ending and stays true to their real-life experience. Wonderful bonus features highlight how the friendship has enriched them both.

The Valet -- another Frenchy film. A wealthy industrialist sets out to save his marriage and keep his supermodel girlfriend by having the latter pretend she's involved with an unassuming car-parking valet. Hijinx ensue, French hijinx. (Apparently it's illegal to make a movie in France without Daniel Auteil; he's in everything and the doe-eyed Gad Elmaleh is close behind.)

Saturday, December 5, 2009

SG2 still wows us all

It's not easy to grow up in the shadow of a sibling who's smart, talented, etc. (I know!) But Supergirl 2, who, following graduation became known as Phi Beta Kim, has continued to impress us all. After teaching for two years, first in a high school then an elementary school, she applied for -- and got -- an incredible scholarship from the Rotary Club.

She was one of just a few students chosen out of, I believe, 50,000 or so applicants. She was offered the chance to study in England, Ireland or Australia. We were all hoping for the former because visiting her would be so much easier.

SG2 decided to be pro-active: she applied to the University of Manchester and of course was accepted, then got the approval of the Rotary Club, so she's all set for next year. And by the way, through this program she can get a Master's Degree... in just one year!

Thursday, December 3, 2009

Honest Coot

The second remodeling company -- the young start-up -- finally came back and finished the seemingly endless window project. One window had to be remade and several tasks had to be redone or revised. Everything was done, redone to my satisfaction. He even took all the leftover paint from the garage to the basement -- "You shouldn't leave it out there." -- something the painters neglected to do. Several other tasks I thought were above and beyond.

He gave me some energy rebate forms for my taxes and we finally sat down to settle the bill. There have been several revisions back and forth as items were returned, credited, new items were bought, etc. But I immediately saw that his skills in math are not equal to his construction ability: he had mistakenly billed me for one of the adjustments instead of the final adjusted total: $180 instead of $1100. I couldn't do it. I pointed out the mistake and paid him the full amount. I think he was a little shaken up. I'll sleep better tonight knowing I paid an honest worker fairly, and I'll bet he'll sleep better knowing he can pay his crew. But I bet that in the future, he'll probably have his wife (or someone, anyone!) double-check his work.

Turkey Day Wrap Up

In spite of my puny condition, I had a great Thanksgiving with my family. Each year I get more and more shmoopy about holidays. This started even before the cancer. I think it's one of those booby prizes of the aging game.

Most of the youngest generation came this year, including my cousins' kids. I don't see them often, and they don't get together often. It was wonderful to look around at this group of smart, healthy, funny 20-somethings chattering at a speed my brain no longer functions, and enjoying each other's company. I was sorry my stamina waned after just a few minutes but I really loved seeing them all, including all four Supergirls, getting the chance to spend some time together.

Mom's food is still one of the highlights. She insists that it's really not too hard now that she's retired; that she does almost everything in advance and then just warms it up, but I know it's still a lot of work. We keep telling her that anytime she decides to pass the baton, we will find a way to accept it and adjust. But as long as she is willing and able, we will be grateful. (I'm also grateful that every year, Mom ignores my feeble protests and sends leftovers home with me.) Bro 1's turkey is another highlight. He makes it in his Weber grill and it is spectacular. I don't know how they manage to drive in from Chicago without pulling to the side of the road and devouring it, but I'm glad they've figured it out.

My favorite highlight this year (and last year) was that Bro 2 flew here to drive me & Molly up and back. He is also the Handiest Man in the Clan, and a good sport about tackling almost any project: plumbing, electric, construction, whatever. During his brief time here, he managed to install a new garbage disposal that's been sitting in a box for 6+ months. He cleaned my humidifier, a huge project, but I'd be lost without it -- I get through the whole winter without static electricity zaps, without sore throats and dry skin, because of that old humidifier. He helped me tackle Laundry Mountain. Best of all, he scoured, scrubbed, bleached, scrubbed and scoured my ancient tub. He probably did another half-dozen tasks I don't even know about, but all this in addition to companionship and driving services, is just incredible.

So that was my Thanksgiving: a nest of family, food, comfort, a few treks down memory lane (always so much fun to compare our vastly different versions of childhood incidents), giggles and gratitude. No fights, tension, drama, tears, picking at old wounds, etc. If yours was half as nice, you had a pretty good holiday, too.

Tuesday, December 1, 2009

Surging Toward...What?

It's hard to accept that we're talking about another military surge. I keep wondering how history will record and judge these two debacles. When the dust settles -- and those are some mighty dusty countries -- these will be the two most ghastly military tragedies every perpetrated by U.S. Forces. Through no fault of their own, I might add.

I think Ghandi was right. We should have hit the ground running, ready to kill them with kindness. Instead, we had a giant invasion, a massive, intimidating show of force... and then our troops sat around for 6-7 years, wondering what the plan was. It appears there was no plan.

But what if the plan was immediately upon "stabilizing" (whatever that criteria was), we had started building schools and colleges, hospitals and clinics, utilities, roads, and bridges. What if we had done something productive for people who had barely left their caves? Of course it would have cost money; certainly no less than we have squandered on graft and corruption, on privatizing what should have been public services.

The Afghanis might be looking around right about now and thinking, "Hey, democracy's not so bad. I like having reliable electricity. My kids, even the girls (gasp!) are getting an education." What could the Taliban offer by comparison? More restrictions, stonings, rapes? It was an opportunity to draw a stark comparison between religious intolerance and a free, tolerant type of society. It's one thing to hear about the decadence and indulgences of the west; something else entirely to experience first hand how that kind of open society can impact your children's futures.

I guess some kind of surge is inevitable; we certainly can't leave Afghanistan worse than it was when we arrived. Of course, I could be wrong about this. It's happened once or twice.

Grazi, Todah, Merci

Thank you all for your good wishes following my "downdate." I feel like a broken record* bringing one steaming pile of bad news after another, but your kindness and support never fails to cheer me. I'm amazed at the warmth and sincerity, not just of my pals, of course, but the rest of you: the friends I've never had the privilege of meeting. I never could have imagined that this little white box on my dining room table would be the source of so much comfort and strength.

*Someone recently pointed out that kids (now 30 & younger) have no idea what "broken record" means. They think it has something to do with sports.

Monday, November 30, 2009

Copyright Dan Piraro

Artificial intelligence sounds a lot like genuine stupidity, doesn't it? More to come; plans for an actual post tomorrow. Meanwhile, this rose to the top of the stack, for our amusement.

Tuesday, November 24, 2009

Big C Downdate

Boi-oi-oinnng. Welcome to Attitude Smackdown! Feelin' better, are ya? Well, here's my reminder that good times don't last, either. I know just how Buddy feels.

First, the labs showed I have almost no RBC (1.87) or WBC (3.6), and Hgb was just 6.0. So I was sent immediately for a blood transfusion. I think this was my first-ever blood transfusion; I don't even think I got blood during my Stem Cell Transplant. It turned out to be a 4-hour joyride of tedium and discomfort. I was just so happy about jumping ship from the clinical trial, and the visit from Supergirl 1, and seeing my neighbors again, that I just refused to notice how quickly I was circling the drain.

Second, the PET scan report was full of not-good news. I was amused, however, that the radiologist used the phrase "moth-eaten" three times. Describing my neck, "Lytic bony lesions throughout the cervical spine are again demonstrated with an overall increased patchy, moth-eaten appearance compared to August 2008." The exact same verbiage describes my ribs and pelvis. I have a seriously moth-eaten (appearing) skeletal structure. I guess it's too late to try snacking on mothballs.

Third, the next round of chemo is Cytoxin. You know when "toxin" is right there in the drug name, we're talkin' Big Guns. The free ride is over. More steroids, bring on the Crazies and the Diabetes. And bye-bye curls, hello Baldini.

Well, I'm not going to say, "it could be worse."

Monday, November 23, 2009

Over the River

... and through Kokomo, the crotch of Indiana! I can't get to the Homeland without enjoying that particular scenic highlight. Bro 2 is flying in today. I'll put his mechanical skills to work on a couple of Villa projects, and then pack for the shlep northward for Thanksgiving.

I'm feeling significantly better... I took myself off of the clinical trial last week. After two months of no stamina, being unable to cross the room without gasping for air, and worst of all, the 24/7 nausea...  ENOUGH. I may find out tomorrow what new form of torture the medical team has in store; I'm hoping my "treatment holiday" lasts a few more weeks but at this point I know that's a mighty slim possibility. I will just have to savor and rejoice in not feeling like crap for several consecutive days.

The less-crappy euphoria coincided with a visit from one of my favorite people on the whole planet, Supergirl #1! I had postponed a planned September visit, and didn't have the heart to cancel again... but as it turned out, I was having quite a boomerang reaction to going off chemo. We had a wonderful visit. I finally let her tackle a couple cleaning projects here and she went at it with zeal and gusto. She vacuumed a whole 'nother dog's worth of hair from the living rooms nooks & crannies.

SG1 got to meet many of the Hoodies -- Miss Chris hosted the Last Nice Evening of the Season gala on her deck Saturday night. There have been several such celebrations; we keep having unbelievably pleasant, warm weather! But (a) I have missed all the others and (b) we're pretty sure this was really the last nice evening.

I'm always thrilled when my family gets to meet some of my awesome, amazing friends and vice versa. After several weeks of wallowing in despair and misery -- and just in time for Thanksgiving -- it was great to be reminded that even after two years of illness, I am blessed beyond belief, certainly beyond anything I deserve, in devoted friends and loving family members.

Thursday, November 19, 2009

Critter Fun

I missed Trash Day today. Still, this made me smile: Smiling Animals.
Too much time, too much money: wigs for dogs.
Too cute: otter babies.

Sunday, November 15, 2009

Big C Update

It's been a difficult week here at the Villa. An MRI showed "nothing unusual," which I find hard to believe because while they were doing the MRI, flames and fireworks were shooting out of my back. I was just sure something would be glowing neon orange. I think the radiologist may be part of the problem.

Another part of the problem was that I was making myself even sicker on pain medication, trying to get some relief, so I met with... a pharmacologist? something like that... and they made some big changes in my pain Rx regimen. But again, this is a short term solution to the problem.

After some conversation about the clinical trial, I reminded my Health Care Professionals that their mantra has always been, "We treat the patient, not the disease." Well, this little patient has been telling them for about two months that THERE'S SOMETHING WRONG with my hips & back. It's like a replay of my road to diagnosis. Am I supposed to speak Urdu? Semaphores? Some African clicking language? I believe I finally persuaded them that this is my priority. I wanted to bring in a neurologist, an orthopedist, another radiologist, but my doc believes the next step is another PET scan. Wonder of wonders, DieSuckah Health Insurance approved it in the first round (I guess they're sick of paying for MRIs) so that is scheduled for next week.

So I've been trying to adjust to the new meds, which have improved pain management, but seem to amplify the nausea issue. It's always something.

In the midst of the drama 'n trauma, I was ready to cancel a Cooking Club supper here Saturday night but decided to tough it out. Thanks to Sis helping with errands and some cleaning, it wasn't too bad... and my girls provided some spirit-lifting soups! Oh, man, was that some good stuff! We got to see Karin's pics of a recent 2.5 week trip to Italy and we're all coveting a similar trip. Cathy F, as usual, brought extra goodies: some DVDs, magazines, and a few meals for the freezer.

I got through the evening with minimal groaning and teeth-gnashing. I'll be spending the day on the sofa, recovering. (Right now, walking across the room requires a brief recovery.) Things are still tough, but I know they could be so much worse, I'm happy to settle for medium-crappy.

Monday, November 9, 2009

Avgolemon Soup (Lemon Chicken Soup)

I've had two requests for this recipe. Avgolemon Soup requires some time, mess and fuss, so it's worth it to make a big batch and freeze it in pints. It's wonderful to share with cold & flu sufferers: got yer chicken, yer veggies and yer citrus!

Bright-Sided Again

There's a Sunday evening soap opera called Brothers and Sisters. It seemed like a Harrold Robbins schmaltzfest, a gooey sort of Dynasty or Falcon Crest (minus the shoulder pads) (which, I hear, are coming back.) But I've watched bits of it the last few weeks because one of the characters, Kitty (played by Calista Bobblehead Flockhart) has Lymphoma.

Sure enough, last night she raised just the idea of discontinuing chemo, and you'd have thought she was talking about killing bunnies with her bare hands. Her mother and sister jumped on her, feet first, and they all dissolved in tears. Gee, they'd qualify for my not-so-supportive support group.

Near the end of the show, Kitty decided to shave her head rather than watching it fall out every day. Bald actually looks pretty good on her, as mom and sis point out. I guess the writers intended this to be some kind of empowering activity.

Bobblehead Kitty will probably come around and agree to more chemo; after all, she's only had one round. I understand the family's reasoning, really I do, but it's frustrating when even fictional cancer patients aren't allowed to make their own decisions about treatment.

Sunday, November 8, 2009

Sorry for the absence. I seem to be stringing several of these in a row. Hope to be back soon.

Friday, November 6, 2009

Abuser = Bully = Coward

Yesterday I was listening to NPR's Fresh Air. Terry Gross was interviewing the director of the upcoming movie, Precious. (I think his name was Lee Daniels.) He talked about his own abusive parents.

I grew up in my own little Norman Rockwell painting. Once in a blue moon, my parents would deliver a well-deserved open-handed swat to the tush. It was called a potch (rhymes with notch) and usually just the threat -- especially in public -- was enough to bring us back in line. And I thought that's how everyone else grew up. I had no idea.

In our first house, a little post-war crackerbox, I vaguely remember a not-so-gay divorcée. She had a kid who was dirty, sticky and mean. No one wanted to play with him, of course, but I don't know that there was any abuse going on.

When we moved to a larger house, there was a girl, Buffy, at the end of the block who lived in the Dark House. It was almost completely hidden by shrubbery, and all the windows had curtains drawn, all the time. We were kids, she was my age. I think we were in 6th grade together...but she didn't dress like the rest of us. She wore mini-skirts and high heels and make-up. Buffy had a lot of bruises on her arms - and probably everywhere else, too. She joked about being a klutz, but she wasn't clumsy. She never came to school dances or football games. She was never in our carpool; I don't remember her parents ever interacting with any of the neighbors. I read this over now, and I wonder why no one said anything: all the signs were there, clearly. As for me, I didn't have a clue. I could not imagine a parent hurting their child. But I look back now, and I can't think of anything else to explain it all.

My very first apartment was in a pretty dicey part of town. It was an old house converted into three apartments. My friend lived upstairs, I had one of the downstairs apartments and in the other apartment was a wife beater and his victim. He used to turn up the stereo to camouflage the sound of his beating, and my friend and I occasionally complained... about the loud music. But I don't think it ever occurred to us to call the police. That's just how we lived then. (You know the old masochist's joke: Why do you stay with that man? Beats me...)

I'm sure there were other instances, other near-invisible victims. Abusers are nothing more than pathetic, insecure bullies and when confronted, they flee like cockroaches. We've learned to shine a bright light into those dark corners, to recognize victims, and to intercede on their behalf. That can only be good, right? If you know someone who is not growing up in happy, pristine all-American vignettes and needs someone to step up and help them, think of Ghandi's words: Be the change you want to see in the world.

Tuesday, November 3, 2009

Making Lemonade

Or maybe Pumpkin Punch. When this bride was left at the altar, she decided to donate her paid-for reception, creating a party for seniors. Awwww!

Monday, November 2, 2009

Periscope Up

Cycle 2 is kicking my booty around the block and back. I've got the whole list of side effects and a few new ones, just for fun. At the top of the list is numbing, crippling fatigue. Between that and concerns about friends who are just getting over (or just beginning to incubate) a wretched cold or flu, I decided to skip a Hoodie soiree last night. My dear friends picked up my cornbread contribution and brought Molly to the party.

They brought me a bag full of leftovers to enjoy, which was wonderful. They included some of the host's chili which I couldn''t resist tasting last night. Yeah. Lemme tell you, that was some serious five-alarm, slap yo' mama, cry like a little girl and beg for mercy hot, hot chili. Either that, or I've become a total Nancy boy, featherweight, candy ass, wimp of the century, sissy girl. I'm not taking bets on which.

In between holding the sofa down, I've been trying to post a poem Sis & I wrote for our parents on the occasion of their 36th anniversary. I made some modifications -- a couple weeks ago they celebrated their 57th Wedding Anniversary! How's that for a spectacular achievement? Especially with the challenges some of their children occasionally presented.

For security reasons (there may be one or two people who don't know) I've left out last names. My parents, Corinne and Erwin, have always gone by Corky and Erv. Their parents were (Dad) Florence and Harry and (Mom) Sophie and Harold. I give you...The Ballad of Corky and Erv.

Thursday, October 29, 2009

Vindication (Go, Margaret!)

My local news at noon included a brief story about a study that confirmed curcumin kills cancer cells. By the time I reached the mute button, the story was almost over. The details are not yet at their website, but I'll keep watching. If you're a myeloma patient and you're not reading Margaret's blog yet... what are you waiting for?

Wednesday, October 28, 2009

Happy Hump Day

I can't seem to sleep more than 3-4 hours at a stretch unless I knock myself out with sleeping pills. Then I go to the other extreme: sleep 8-10 hours, wobbly and foggy for several more hours. But I usually settle for those 3-4 hours and get in a nap or two during the day. If it's after 4 am, I just get up and start my day. Sometimes Molly gets up with me, more often she gives me a "yer nuts!" kind of look, and sleeps for another 2 hours.

Today, I was up at 4:30am with my usual three wake-up calls: bladder, bone pain, and night sweats. By the time I relieved myself and got out of a soaking nightgown, I knew I'd be up for the day. That's okay; I actually have a couple things to do today and I've decided I do much better with a list rather than just let the days slide by. I have to make a very rare trek to Walbarf, finish making some soup I started yesterday, and sweep the whole house. Things are going to start growing out of the floor soon if I don't.

Speaking of barfy, I got the high sign: I qualify to stay on the Clinical Trial, at least for the time being. That's a big relief. Much as I dislike the nausea, I have three big reasons to stay with the program. 1) There are no steroids on this particular trial. (Cue Hallelujah Chorus) 2) The drug is in pill form. I'm getting to be a very "hard stick" from 1.5 years of steroids... and 3) I'm nauseous but not actually barfing. I find nausea (barely) bearable, barfing is not. So...yay me!


OOPSY! Mom sent a concerned note upon reading Afraid So. "I don't remember reading anything as down, as depressing, as cheerless." Wow - I was so surprised -- I actually laughed out loud when I read it. I wrote back that I'd thought the poem was hilarious, that it was very tongue-in-cheek, a funny perspective on pessimism. (I admit to wondering if I sometimes sound like that!) Apologies to Mom and to everyone who found the poem to be a huge downer. That truly wasn't my intention and I'll double-filter my selections in the future.

Of course, Mom concluded, "I hope that that poem didn't bring you down like it did me. I think I'll go drink some spoiled milk and walk on some crushed glass. That ought to make me feel better." Hmmm. Where do you think my sense of humor came from?

Sunday, October 25, 2009

Afraid So

by Jeanne Marie Beaumont
from Curious Conduct. © BOA Editions, Ltd., 2004

Is it starting to rain?
Did the check bounce?
Are we out of coffee?
Is this going to hurt?
Could you lose your job?
Did the glass break?
Was the baggage misrouted?
Will this go on my record?
Are you missing much money?
Was anyone injured?
Is the traffic heavy?
Do I have to remove my clothes?
Will it leave a scar?
Must you go?
Will this be in the papers?
Is my time up already?
Are we seeing the understudy?
Will it affect my eyesight?
Did all the books burn?
Are you still smoking?
Is the bone broken?
Will I have to put him to sleep?
Was the car totaled?
Am I responsible for these charges?
Are you contagious?
Will we have to wait long?
Is the runway icy?
Was the gun loaded?
Could this cause side effects?
Do you know who betrayed you?
Is the wound infected?
Are we lost?
Will it get any worse?
Life's full of questions; doesn't it seem that "afraid so" is too often the answer? Afraid so...

Ms. Beaumont's bio says that this poem was made into a short film by award-winning filmmaker Jay Rosenblatt. I'm intrigued: I'll have to check at Netflix and hope that their reply is not "Afraid not."

Go See...

Dollar Store Crafts offers a fun craft idea complete with easy instructions: the Alien Abduction Lamp. I love it!

Crafters share ideas and sources at Tip Junkie.

Clever ideas and designs as well as Freebies from some talented, crafty designers.

Wednesday, October 21, 2009

Helen Back

Monday, aka Day 28, spent in the hospital, wasn't nearly as grueling as the first time. For starters, I brought my own breakfast, lunch and dinner. It's amazing that they serve such spectacularly bad food. It's almost like non-food, or negative food. And they serve it to people who are already sick enough to be in a hospital! I also think that I was so sick, it just drained a lot of the contrariness out of my system. I made an effort to get out of bed every couple of hours and walk around the ward for a few minutes instead of laying there like a beached whale (as I did before and after) and maybe that helped pass the time. Still, there's nothing like a day in the hospital to give you fresh appreciation for life outside the hospital.

Sis had me back home in time for the last half of Dancing With the Stars. Still too much hype and too many bad dancers. I really like the show better after they've thinned the herd to the best 3-4 couples.

Then I spent the night wide awake. I'd napped most of the day and the doc has started me on another antibiotic and a steroid dose pack. Ding! Ding! Ding! It's Crazy Steroid Lady! (cue Psycho violins - rhee RHEE rhee!). And of course I had night sweats and bone pain and just all kinds of fun. By morning I was cranky, sleepy, sweaty, crazy -- I was like all Seven Dwarves compressed into one. Just add water.

That was my frame of mind as Torment Day 2 began at 8 am. Phase 2 of the Villa's Great Remodel Debacle was replacing 10 windows. I would rather have repaired the old wooden windows but from a resale standpoint, it's a no-brainer: everybody wants new, easy, vinyl windows. I found a young guy, a real motivated go-getter who's starting his own remodeling business and was very highly recommended. Well, bless his heart, he was here with his crew at 7:59 am, ready to go. And every minute for the rest of the day, there was noise, chaos, dirt, sawing, hammering and hollering.

The icing, the highlight, was a giant air compressor parked in my kitchen, to power their pneumatic hammers. Every 15-20 minutes this thing would go off, only for about 20 seconds, but the noise was... I don't know, maybe like standing three inches from a foghorn? I don't even know how to describe just how loud this monster was, except to say I was surprised my ears weren't bleeding. Sis was here to attest that I had to be physically scraped off the ceiling if it happened to go off when I was actually in the kitchen. There were four workers and by 5 pm they had replaced 9 of the 10 (one has to be remade). Which is great, because I'm sure two days of that would have killed me.

And today the house painters arrived. Because they didn't bother bringing me the samples until this morning, I had to look at them and make a decision on the spot. It's a little unnerving to have lived in a white house for 20+ years, and then have to pick a color in 20+ seconds. But they wanted to start today, and so did I. They weren't nearly as loud as the window guys, but it's still been 8+ hours of paint sprayer, clanking ladder, and boombox blaring country music. Throughout, I'm still horribly sick, and congested, and back-achey and now crazy sleep-deprived. Just for giggles, I threw in a Rosacea outbreak, yeah, love that purple face o' mine. (I think in football, it's called "piling on?")

It's supposed to rain for the next 4 days and I really, REALLY want to have this over and done with. I have completely abandoned the idea of remodeling the kitchen; I think it's going to take every bit of 6 months to try and grow some nerve endings back again. But Hell Week is almost half over. That alone is reason to celebrate.

Manifold, myriad, multiple thanks to Gracie and her parents for keeping Molly with them until Tuesday night. What would I do without them? I can't even imagine.

Saturday, October 17, 2009

Day 28

Hi, ho. Hi, ho. It's off to the hospital I go. Day 28 (Monday) will be another 12-hour marathon with 6 blood draws and another bone marrow biopsy. Sis will bring me and spend the morning, as she did last time. A real trooper.

Meanwhile, I'm sick, sick, sick. The Z-pack did nothing for me so it's either viral or a very resistant bug. Whatever - I'm sick of being sick. Sick of having my right ear plugged up. Sick of blowing my nose every 12 seconds. (It's no consolation that everyone else is sick, too. They all seem to be getting better.)

I'm supposed to have guys here replacing a half dozen windows on Tuesday, in preparation for having my house painted Wednesday or Thursday. And then, I'm putting all home remodeling projects on hold for awhile. Bad timing, the hallmark, the cornerstone of my life.

Until then, I'm just a'blowin' and a'humming: Urp on the Water, Urpway to Heaven.

Thursday, October 15, 2009

Urp To My Lou

Remember when stores used to put the price on the item? Now they put the price on the shelf, and when you check out at the register, you'll be appalled -- if you're paying attention -- at how often the computer gets it wrong. To reassure their customers, Krogers instituted a policy that if the register comes up with a different price than the shelf price, you get the item for free. (If you've bought more than one, subsequent items will be sold at the shelf price.) I get at least 1-2 items per week free. Hit the jackpot today: a bag of frozen chicken breasts said $5.99 on the shelf, but rang up at $9.99! As long as I still have a good (if selective) memory and Krogers has this policy, it's like having a part time job.

Now, the office staff does make you wait while they verify the shelf price. Most of the time, it's just last week's sale tag that someone has forgotten to take down. It seemed like a long wait today, and I was hangin' 10 on the crest of a nausea white cap. So I amused myself with my latest distraction: thinking up songs where I can substitute "Urp" or "York" for one of the words. Like Free Urp ("Free Bird"), York ("More"), Urp River, and my favorite, Urpy ("Windy"). The object of the game is to just hang on until the urge to hurl has passed.

Tuesday, October 13, 2009

I rike!

Even through my nausea, I start thinking about soups as soon as the weather turns cooler. The only one I had a taste for was a favorite from the Supper Club, Chinese Chicken Noodle Soup*.  As soon as I thought of it, I started salivating.... must have! must have! I bought the ingredients on the way home from getting prescriptions filled. Sis & Supergirl 3 stopped by to help. It is just as delicious as I remembered.

Since I've been riding the nausea waves, I've only wanted vinegary, pickled foods, like the Mediterranean Tuna Salad (that I still eat almost every day), and I've lost my taste for most dairy/creamy foods. The real shocker? I've gone more than a week without any peppermint ice cream.

I think most Chinese soups have amazing curative powers. For years, I've asked Sis to shlep to a nearby Chinese restaurant (a cheap, greasy one) to get me a quart of Hot & Sour Soup when I'm in the grip of a vicious cold or flu. YUM. Whatever doesn't kill you makes you stronger, right?

(*I substitute plain old spaghetti for the soba noodles, which I can never find in the "regular" grocery. I break it into 2-3" pieces and cook it separately, adding them last.)

Monday, October 12, 2009

Why, In MY Day...

Speaking of generational divisions, here are a few things that have been invented just since I joined the planet:

  • battery-operated watches / digital watches
  • pocket calculators
  • blow dryers
  • electric toothbrushes
  • microwave ovens
  • cassette tape players/recorders
  • compact disk (CD) players/recorders
  • DVD players/recorders
  • anti-lock brakes
  • frost-free freezers
  • personal computers 
  • self-cleaning ovens
  • cell phones
  • You Are Here: the internet 

(I didn't include medical advances, which would be a huge list on its own.)

I'm sure I've forgotten many. They are mostly designed to save time or make life easier. Have they?

Heavy Sweater

Contributing to my sleeping challenges these days is the return of the night sweats. I've never been a heavy sweater; in fact I rarely used deodorant. Sweating is a bit... unladylike, and I think I was secretly proud of my unsweaty tendencies. So the night sweats were all new to me when they started over a year ago.

I haven't had them in a long time so I think it's the chemo drug and not the cancer. I wake up -- sometimes two or three times a night -- drenched in sweat, dripping head to toe. My scalp sweats profusely. A river runs down my back, another stream splashes between The Girls. My forearms sweat, for crying out loud. I didn't even know they could. If it's really bad, I dry off a bit and put on a clean nightgown, sometimes twice a night. I have to time it just right, or I crawl back into bed with major shuddering chills.

On top of the sweaty fun... sleep remains elusive. After a last-minute potty run, I decide which side I'll sleep on, usually with a heating pad. I get all situated, read myself almost to sleep, close the book, turn out the lights and finally, slowly, drift into slumber... only to have the Bims and Beaux come roaring home between 2 - 4 am, forgetting that they are drunk and stupid. Then I'm not only awake, I'm awake and pissed. Like the Three Little Pigs before them, they are incapable of thinking of anyone else when they're drunk. (It's not generational, 'cause the kids across the street -- kind, generous, thoughtful -- are the same age.)

Three good things:

  • I've learned compassion for people who are, by nature, heavy sweaters.
  • I've learned appreciation for REM sleep and the ability to nap.
  • If there is such a thing as Karma, the Bims and Beaux are in for an exceptionally miserable middle age.

MYSTERY TATTOO. Spotted at my local Target, an almost-bald young Asian woman with a tattoo swirling all down her right arm (she was sleeveless). It was monochromatic (navy) like a prison tattoo but the artwork seemed professional. In between stars, spirals, and maybe the tattoo version of pixie dust, there were safety pins, one stiletto-heeled platform shoe, the obligatory skull and crossbones, a purse, and an eyelash curler. It was the eyelash curler that got me.

Friday, October 9, 2009

Anti-Social Networking

It seems that every couple of days, someone asks me if I tweet. For my irregular readers: no. No tweets or peeps or chirps or twerps. No Facebook (audible gasp!), no MySpace, no LinkedIn, nada. In fact, I'm so sick or the whole badly-named Social Networking, I've decided to start a desperately needed service for those of you who just can't unplug. It's called...

Anti-Social Networking!

You spend your days massaging your overworked thumbs, texting and tweeting and twiddling. And when you're not furiously faux-typing, you're trying to read everyone else's vital, important, life-changing messages, messages like "Sup?" What if you had missed that message??? You're trying to keep up with people who've never heard of you -- but would surely want to be your BFF if you ever did meet. All that is very taxing and tiring, and Anti-Social Networking (ASN) is here to provide relief!

When you sign up with ASN, we will automatically respond to every message you receive. You don't even have to decide what message to send -- we take care of that for you! Some sample messages:

  • When was the last time you went outside?
  • Do us all a favor: Unplug for 24 hours.
  • Hang up. You can do it!
  • Was that really worth 30 seconds of my life?
  • I don't care. No one cares.
You can see where we're going, can't you? Yes, the messages will slow down to a trickle, and eventually they will stop. And that's okay, that's actually a good thing. (If you're not sure, we can connect you with a three-dimensional support group.) Eventually, people will begin actually talking to one another. Imagine going in to a coffee shop and seeing people converse with each other! It's going to take some adjustment, but I think it's in the best interest of the species to foster and encourage personal contact.

Now I'm going to go for a walk, visit a neighbor, and pick the last of the zinnias. And when I have a moment, I might just start a search for the 12-year old who can write the Anti-Social Networking program for me.

Thursday, October 8, 2009

Some news

The latest numbers show that the bad stuff (Kappa Light Chains & Ser. Ratio) are still increasing... but only by 10% instead of the previous 25%. So I guess that's an improvement...slowing the increase? That's what my doc thinks so I'm going to slog through the next 2 weeks of the clinical trial, and re-evaluate at that point.

I also started a Z-pak antibiotic, because I felt right on the verge of a monstrous strep throat. I could have gotten the bug from family or friends, but I think it's more likely that on one of my few outings -- drugstore or grocery -- someone wheezed or snorked in my direction. Drugstores are especially toxic. They're full of sick people! I've trained the pharmacy personnel to keep antibacterial hand gel at the counter. If I have to sign that #@!! book using a pen that sick people have been touching all day....

Tuesday, October 6, 2009

Money for Nuthin'

(Speaking of cranky...) After a doctor's appointment and pharmacy run, a parking spot was a clear indication that the taco gods wanted me to enjoy 99¢ Taco Tuesday. One of our long-time panhandlers has apparently left downtown for the greener pastures of my 'hood. He actually knocked on my car window to show me his "I'm deaf (and lazy!)" card. I shook my head, no: I'm not giving you money. Get a job, or enjoy the services of the homeless shelters and food banks I support.

Instead, he waited for me and tried to hit me up again in front of the taco joint. He showed me the card again and held up his index finger: "I only want one dollar!" he mouthed. He was clearly indignant. So was I. I wonder if this qualifies for the "aggressive panhandling" that our city is trying to address. I'm not going to call anyone or make a stink about it yet, but if this becomes a pattern, I'll have no problem reporting him.

I feel badly for this guy, for anyone with a disability, for anyone who's lost their job...but I don't feel an obligation to give someone money for nothing, just because they ask for it.

Monday, October 5, 2009

The Tyranny of Cheerfulness

If we could cure our cancers with positive thoughts, we would. If there's one thing I'm positive about, that's it.

I've ranted before about the Positive Thinking Terrorists. They believe I can cure my cancer if I only believe hard enough -- kind of like fairy dust, I guess. And by inference, that I caused my cancer, which I find even more offensive. There's more evidence to support my view. Positively Downbeat: sometimes happiness isn't everything.

In the article linked above, the author discusses how we reached the point where positive thinking is supposed to cure or alleviate anything, and failure can only be blamed on not thinking positively enough. She mentions a book that has just zoomed to the top of my reading list:

In her new book, Bright-Sided: How Relentless Promotion of Positive Thinking Has Undermined America, Barbara Ehrenreich calls positive thinking a "mass delusion." She argues that an unrelenting drive to train our brains to overlook problems and blame ourselves for failures has blinded us to inequality, incompetence, and stupidity.
Can I get an Amen, Sister? AMEN! I'm sure a positive attitude is helpful, especially to caregivers, family members, and medical personnel, and for their sakes alone, I try to feel optimistic. I keep hoping for the best. But if we could cure our cancers with positive thoughts, WE WOULD! Do you dim bulbs honestly believe that we want to suffer? Excruciating pain, bankrupting expenses, devastated family members...yeah, baby, bring it!

I think I'm a realist, a pragmatist: I want to know the most likely outcomes for each possible scenario, not just the happiest ones. That's how I'm dealing with cancer. If you think that's negative, or just not positive enough, keep it to yourself. Life's unfair and cancer's unfair and look out, baby, karma's a bitch. If there's one more thing I'm positive about, that's it. And that's why I will continue to hope that even the Positive Thinking Terrorists never have to test their idiotic theories first-hand. I am positive that I'm more compassionate than they are.

If I could cure my cancer with positive thoughts, asshole, I would.

Sunday, October 4, 2009

Oh, goody! Today's pictures come from the archives of the Cincy cousins. (Well, MB has been a Canadian for 20+ years, but I'm sure she's still a Cincy girl at heart.) Thanks for sharing; these are wonderful!
We've practiced enough, Dad. When is it gonna be our turn to blow bubbles?

MB and I are sharing something... that's of great interest to the giant, camera-wielding shadow at our feet.

Grandma Flo raised me right: For a big outing to Storyland Zoo, I've got a death grip on my little pocketbook and Cousin #3.

Thursday, October 1, 2009

Still No News :)

I guess my weekly labs during the clinical trial are going to be very abridged, so I won't know the immunoglobulins, etc., until the monthly tests roll around again. Meanwhile I'm enjoying a visit from my parents. Not only are they good company, but cleaning my house is my mom's hobby. No matter how clean (okay, tidy) I think it is, there are dust bunnies waiting to commit Hari Kari in her honor.

Thanks for all the nausea suggestions. I'm trying most of them (so far without any success). I thought the inner-ear connection was very interesting. My hearing in my right ear has been sort of in-and-out and I'm always afraid I'm shouting at people. Meanwhile... I can't believe it's October! Good heavens, when did that happen?

Monday, September 28, 2009

No News is No News

We had some mighty wicked winds whipping through this part of the country last night. They were very loud... and so was the empty trash can that kept getting tossed from one end of the yard to the other, and back again.

Just finishing week 1 of the clinical trial; tomorrow I go back for blood tests which will really be the indicator: are my numbers better, worse, or the same?

The drug itself has had two major side effects: nausea and skin itching. The nausea is particularly troubling but as long as I'm not actually hurling, I consider that manageable. However, locked in the grip of urpy-ness, I can't really get much done. I'm afraid to run errands because what if this is the time I barf? The only thing I have for nausea just makes me sleep for a couple of hours. I've tried ginger, wrist bands, etc., without success.

So I'm sleeping or sleep-walking through most of my days. The gutters need cleaning (they'll need it again in 4-6 weeks) and the yard needs mowing and raking. My backyard gate is still wonky. I bought the turnbuckle stuff to fix it but never got around to it. My chore list seems to grow daily and I'm starting to feel a bit overwhelmed. There is so much to do, stuff I feel like I should be able to take care of myself. I can't continue to impose on my friends; they've already been more generous than I ever expected. I may just try to find some cheap labor on Craig's List.

Recent Netflix movies I enjoyed: The Grocer's Son, The Chorus (both French.) Au Revoir!

Thursday, September 24, 2009

Support LLS

Here's one that won't cost anything: Click on the Social Vibe link (below the blog archives in the right hand column) and follow it to support LLS.

Traverse City: Water Fun

Isn't this a great picture? Bro 1 and I look a bit squinty and scowly. "Can't we just go? You said we'd leave when we had our life jackets on. No fair!" All the Cincinnati cousins came this year, so the Bro's had one more boy-person on their side.
Aunt Sonia (“Tootsie”) looks on as Cousin Henry & I prepare to depart on a great paddle board adventure. Why, just look at those treacherous white caps! Yeah, the nearest wave was probably... in the Pacific Ocean.
Uncle Joe demonstrates yet another form of paddle board exercise: the head balance. Bro 2 and I are eager to try out our new water toy: sit inside the styrofoam ring, squeeze a hidden bulb and squirt water from the gator's nose at whoever was within range. The water was very shallow for a long ways out and on most days, as still as glass. My Cincinnati uncles, Joe and Sid, were both very funny guys and kept us laughing all week.
Aunt Rhea with Bro 2, Cousin 3, and meself back there in the chair. "Nuclear family" lines were erased as every aunt and uncle parented, cuddled, fed and disciplined every kid. None of the cabins had televisions, but I seem to remember the men bringing transistor radios (back then, the size of a shoebox) to listen to critical baseball games.

Our childhoods were so much simpler and less complicated than what kids experience today. Of course, no computers. And no calculators, not even adding machines. No videogames. Board games were Sorry!, Candyland, Chutes & Ladders, and Scrabble. We were mostly to small to play Twister competitively but that didn't stop us, and every game ended up in a heap of hysterical giggles. We played pretend a lot, with nothing much but our own imaginations.

Dueling Dahlias, Part Deux?

They just get more and more spectacular, don't they? Mom says this bi-colored beauty is nine inches across. There's no ruler in the photo but we all know Mom wouldn't lie, or even exaggerate. Much.

Miles for Myeloma

Miles for Myeloma began as a group of Dr. Abonour’s patients who wanted to organize a run/walk event to raise funds for multiple myeloma research at Indiana University. Rather than have his patients plan a standard participatory event, Dr. Abonour offered to cover the miles (and the state of Indiana) himself. In two days, he cycled from Carmel to Marion, then ran from Marion to Fort Wayne. The weather was unseasonably hot, and Dr. Abonour was actually hospitalized briefly in Huntington, but stubbornly insisted on completing his mission. In its first year, Miles for Myeloma surpassed its goal of $25,000, raising $130,000. For his efforts, Dr. Abonour was recognized in Sports Illustrated. (Read about the history of M4M here.)
In 2007, after running from Indianapolis to Bloomington, more than 250 of Dr. Abonour's patients and family members formed a human tunnel to welcome him onto the football field.

On Oct. 2 and 3, 2009, Dr. Abonour will bike from Evansville to Bedford to Indianapolis, covering 200 miles in just 48 hours. Thanks to the efforts of IU myeloma patients, Miles for Myeloma -- now in its fifth year -- has raised more than $1 million. These funds go directly toward multiple myeloma research at the Indiana University Melvin and Bren Simon Cancer Center.

Although Dr. Abonour's efforts are as inspiring as ever, and the patients'/caregivers' fundraising efforts are just as awesome, the funds coming in are far below what they have been in the past. Please consider a donation. No gift is too small and every gift is appreciated. Remember, this funds MM research and nothing else! Here's another way to consider a gift...

If you still have a job, send $2
If you have a job you like, send another $3
If you are relatively healthy, add $5
If your loved ones are healthy, add $5
If you have health insurance, add $3
If you belong to a religious congregation, add $2
If you have a reliable car, add $2
If your family eats dinner together, add $3
If you have a best friend, add $2
If s/he doesn't have cancer, add $2

You get the idea. When you've decided what your gratitude is worth, click here to give it some legs. Tell them The Coot sent you. And as someone who benefits directly from those MM research funds, THANK YOU!

Wednesday, September 23, 2009

One Year Ago

It's hard to believe my stem cell transplant was one year ago today! Unfortunately, my immune system was not reborn. It's still limping, dragging, stumbling along. So many jokes about being a lifelong underachiever just aren't funny any more.

I survived Day 1 of the clinical trial yesterday and since it was a bit of a marathon, I'm going to celebrate that instead. 12 hours in the hospital. Blood draws every 2 hours. IV sedation and another bone marrow biopsy. Disgusting, repulsive hospital food (they're concerned about nausea, but they send buttermilk salad dressing?) but I anticipated that and brought a little food with me; not nearly enough. Lots of little annoyances. By 3pm I was watching the clock... with 5 hours to go!

Finally, at 7:45 the nurse (a new one, right after a shift change) came in the check "vitals" before my release. And I had a fever of 100.9º. The protocol said the nurse had to get someone's okay if I had a temp of over 100.5º. I explained that I'd been under blankets for two hours because the room was set at "arctic" and I couldn't adjust the thermostat. Doesn't matter, the nurse is not going to put her neck on the line by releasing me without someone else's say-so. Here's where it starts getting silly. She pages the doc on call, who never answers the page. She starts going down the line, guessing who to call, consulting -- of all people -- the switchboard operator for suggestions. And I'm getting angrier, she's getting more upset, the few people who answer the page say, "I don't know anything. I'm not signing off." I'm ready to write my own waiver and yank the IV out myself. I felt badly for the nurse, and vice-versa. My friends were waiting for me downstairs and I had no way to reach them. (Duh - we've never exchanged cell phone numbers since we both just use them for outgoing calls.) After she checked my temperature again, I finally bullied the nurse into letting me go. It was traumatic for both of us and we parted with tears and hugs and good wishes.

I had a lengthy discussion with the research nurse in charge of the whole deal; her "system" for medical oversight had proved to be a house of cards. I seriously considered dropping out of the clinical trial, but after I reviewed my litany of complaints, I saw that most of them were quite petty or easily addressed. And the big one, well, everyone is entitled to one mistake, even if it's a humdinger. So I'm going to hang in there for the time being.

Here's the punchline: my Kappa Light Chains have tripled and then doubled since the last labs, just over two weeks ago and the Kappa/Lambda Ser. Ratio and the urine protein are increasing at similar rates. So... there is a chance, even a likelihood, that my oncologist may just pull me off the clinical trial and pop me in the hospital for some high-dose chemo. Well, the slingshots haven't been working, maybe it's time for a cannon.

Monday, September 21, 2009

Big C Update

I was accepted into the Clinical Trial and will begin tomorrow. Day 1 includes 12 hours in the hospital, mostly just to monitor my reaction; I will have a blood draw every 2 hours. I will also have a bone marrow biopsy and have requested IV sedation for that. It may mean dealing with my dear friends from Intervention Radiology (aka the IR Pricks) but I really do not care to be awake for that procedure, so it's worth a risk to me. I return to the hospital Wednesday morning for one more blood draw, and then I'm on my own. The drug is in pill form, so I'll just take one a day for 28 days, then return to the hospital for a repeat of Day 1.

I'm hopeful for good results from this drug but if it doesn't work out, I can always go back to Velcade, or Revlimid, or another agent. The good thing about the clinical trial is that it does not include a steroid. I know the steroids mitigate a lot of side effects, and help with stamina and pain management, but I really value my sanity so it seems like a fair trade-off.

Mediterranean Tuna Salad

1 12 oz. (or two 6 oz.) can chunk light tuna, drained
1 stalk celery, chopped
3 Tbs fresh lemon juice
2 Tbs EVOO (the good stuff)
2 Tbs brine-packed capers, drained & coarsely chopped
3 Tbs silvered almonds, toasted & coarsely chopped*
salt & pepper
Optional dill springs

*watch the almonds; there's about two seconds between perfectly toasted and burned to a crisp.

Stir together tuna, celery, capers. Drizzle with lemon juice & olive oil and stir just to combine flavors. Add salt & pepper with a light touch; the tuna & capers are already a bit salty. Stir in toasted almonds just before serving. Serve on a bed of baby greens with fresh crusty bread. (You are now cured of gloppy, mayo-drenched tuna salad!) Bon appetit.

Saturday, September 19, 2009

Like Hell Only Cheaper

I think he has a onesie on…like a gangster leotard. Connecticut.

It's not just fat people in stretchy clothes. It's not just mullets and rat tails. It's not just stuff stuck, painted on, and glued to trashy cars. It's not just t-shirts with obscenities and clothes that don't cover nearly enough. It's all of this, in combinations you've never imagined, and so much more. Spend a little time at PeopleofWalMart.Com.

(This was a little wake-up call for me, and a reminder that cameras are everywhere. Lately, I've been leaving the house without a quick face-and-hair-check. No more.)

WalMart: Just like Calcutta but with better parking!
Other clever slogan suggestions (and in the comments, too) here.

WalMart don't get no respect... and that's as it should be.

Dueling Dahlias

Bro 1 is one of those people who happens to be very talented at almost everything he does, even his hobbies. (Thankfully, he has many other good qualities to balance this out.) Just in case we thought that the dahlia he brought to me last week was a fluke, a one-shot wonder, Bro 1 sent us all this picture of the next flower, produced by the same plant. And it is just as gorgeous, isn't it? We don't have a ruler in the shot to verify, but it sure looks as big as the previous flower, which was eight inches across.

Mom is normally a very easygoing sort of person, but apparently this sparked her competitive streak. She believed her flowers were every bit as impressive, and that she should be recognized for her efforts. Who knows how many hot summer hours she spent in the back yard, how many gallons of Miracle Gro were used, all to tenderly nurture her dahlias...? But Mom finally sent us a picture of her finest flower:
Good on you, Mom!

Thursday, September 17, 2009

R.I.P. Patrick Swayze

Patrick Swayze died a few days ago of pancreatic cancer. I don't think he was a brilliant actor (something he'd probably have conceded, too) but he was appealing and endearing. Men liked him for his macho, manly roles in movies like Road House and Point Break. Women loved him in uber-chick flicks like Ghost and Dirty Dancing.

Swayze should have won an Academy Award for the latter, not for his performance per se -- it was actually a pretty bad movie, a saccharine Catskills schmaltz-fest -- but for uttering with any believability whatsoever one of the stupidest lines in cinematic history: "Nobody puts Baby in a corner." I liked the movie in spite of that, more because of my lifelong crush on Jerry Orbach. (Let me just add that I reserve the right to hurl on any human being I ever encounter named Baby, Precious, Honey or Darling.) My favorite Swayze movie was To Wong Fu, Thanks for Everything, Julie Newmar. If by some chance you missed this brilliant film, put it in your Netflix queue right away.

But more than any acting role, I admired Swayze for that excruciating, invasive and slightly idiotic interview with Baba Wawa. He and his wife were humble and sincere in spite of Baba's inanity, and I hope he is recognized, and gets some kind of lifetime award for enduring that interview. He was gracious, tolerant, and unbelievably patient, all while millions of viewers were probably yelling at the screen, "Smack her! Come on, just one good punch!"

Quality of Life IS a Valid Issue

...We live our lives with whatever mix of things that give us pleasure and steps we take to be responsible, and sometimes we enjoy health and sometimes we get sick. But if we live only within the bounds of responsibility, if we forgo completely the pleasures, we will miss the point of all this striving for longevity, the whole reason for living. And we might get sick anyway.
From a link (thanks, Anon) that I recommend everyone take a look at:
For a Cancer Survior, Living (Well or Not) Is The Best Revenge

Wednesday, September 16, 2009

Patients never fail

I dragged myself to a support group meeting on Monday night. They're all nice people, but most of them are having a very different MM experience from mine, and all of them are married, so I usually leave feeling even more lonely and alone than I was before. I was put on the spot, not thinking fast enough to just say "I really don't want to talk about my situation." So I briefly mentioned the clinical trial, but that I'm still reserving the right to cancel that at any time, and to refuse further chemo if I so choose.

If any people on the planet might understand why I'd consider stopping treatment, I would expect these people to. I didn't expect a stamp of approval, just a little understanding. But they were all alarmed and horrified, and they just couldn't stop beating me up over it. "Well, I just don't think you should ever give you. You just never know, there could be a new drug tomorrow!" Thank you, Harry Sunshine. But you haven't been in treatment FOR 18 F***ING MONTHS! It was a huge disappointment to me. A not-very-supportive support group.

Supernurse G did offer this little pearl that I'm clinging to like a lifeline: "Treatments can fail to work for patients, but patients don't ever fail treatment."

As it happens, this was her last support group meeting. She's been overloaded for some time, and she's earned a break. She has done this for three years, on her own time. I keep saying I'm going to quit, but end up going back. This time, I left feeling that I really can walk away, and I probably will.

Tuesday, September 15, 2009

Talk to The Face: Emmargudtars

I was already peeved. The pet store had stopped giving out samples because some folks took advantage, and were using the samples in place of dog food. I (she said self-righteously) only took one or two at a time, supposedly for Molly to try, but also to keep on hand when I run out of food and it wasn't errand day. So I was extra surprised when I left the store loaded for bear, and someone tried to start a conversation with me in the parking lot.

"Hadja lockum tars?"

"I beg your pardon?"

"Hadja lockum tars?"

"I'm sorry... I don't understand."

"Em tars, tars." He pointed downward. "Dja lockum?"

I was trying to read his lips. Was this really English?

"Themmur'a same tars ahayed on m'lass core. Emmur gud tars."

Tars...Tires? ...TIRES! Goober was talking about my tires! How d'you like them tires? Them are the same tires I had on my last car. Them are good tires.

I had been to the doctor, so I was dressed like a human. And it was bath day. So I guess I looked presentable, but nowhere near fetching: not the same planet, not even a nearby universe. Was this just another instance of a stranger being drawn to The Face? Was this the worst pick up attempt in history, or was this guy really excited about the tars, I mean tires?

{And why, oh why, can't My Staties learn to conjugate the verb To Be? Match the pronoun and the verb. I am, you are, he is, they are. Not "them are." And certainly not "Emmur.")

Saturday, September 12, 2009

The Giant Pitcher Box

For most of my life, I had a 13" television. That was fine; in fact, I sort of liked the fact that television vs. reality was so easy to differentiate. And nothing is that scary on a 13" screen! When my last 13" died, my parents decided it was time for me to lurch forward a few decades, and they bought me a 19" television. It looked huge to me ... but eventually I got used to it. I even came to appreciate the bigger screen; I could actually read words and messages when they were displayed. And now I have pole-vaulted ahead once again with the purchase of The Monolith: the 42" Samsung behemoth. Again, I have to admit that viewing is much more pleasurable, especially for movies. The most important thing to me, though, was that it fit into my entertainment armoire, so that I can close the doors on it when I'm not watching. I've always hated big televisions that just sit there like a silent bystander, eavesdropping on every conversation.

The worst example -- it still stands out in my memory some 30+ years later -- belonged to someone I knew when I was in high school. Mike M. had a day job with the street department. His side line was .... recreational substance procurement. I liked him okay, but I was really in love with his dog. Spanky was a little black and white Australian shepherd mix., a 20 lb. mutt. He went almost everywhere with Mike, and he was like one of those old-time circus act dogs. Spanky would leap, twirl, flip himself into Mike's arms, or sit like a parrot on Mike's massive shoulder.

Mike was a guy with a lot of disposable income and not very much taste. He was a dim bulb, but at least smart enough to avoid drawing attention to himself. He drove an old truck, and lived in a small bungalow in a rather dicey neighborhood. His only indulgence was a great big television and a very good stereo. But Mike lived in fear of someone breaking in and stealing these treasures, so he built what I called The Coffin. It was probably six feet long, four feet high, and maybe three feet deep. The corners were solid 4x4s. He cut holes into the plywood front for the television, receiver, tape player, etc., and bolted everything in. No one was ever going to walk out with those items. And it was backlit! Mike's version of an aesthetic feature, I suppose, but it made it look like an altar -- an altar to bad taste. It really was one of the stupidest, ugliest things I've ever seen, and I've known ever since that I would either have a very small television, or one that could be hidden behind doors, or both.

Thursday, September 10, 2009

The Voice of Experience

Actor, author, comedian, screenwriter and cancer survivor Evan Handler shares a few thoughts on health care, the propsoed bill, and Mr. Wilson's uh-oh moment: Have You No Decency, Sir?

(Years ago, I read his memoir, Time on Fire. Brilliant.)

Soup to Nuts to Generosity

I went to the Cancer Pavilion today to clear the first hurdles for the clinical trial. First an EKG -- less than 15 seconds' worth! -- somehow confirmed that I was within their parameters, heart murmurs notwithstanding. Then a blood draw, and then a skeletal exam, a long series of x-rays. I should know in a day or two whether, as Heidi Klum would say, I'm in or I'm out.

On the way home, I made a rare stop at Aldi Foods. It's one of those bring-your-own-bags, pay-for-the-shopping-cart super cheap groceries. Except that most of the groceries aren't super cheap; you've got to do your homework. But they do have good prices on produce (look carefully) and nuts and a few other things. It's not really close, and it's in a dicey area so I don't shop there often.

It happened that I was dressed like a grown up; I don't go to medical appointments in shorts and t-shirts, although many people do. I was three steps up the ladder, in clean dress slacks and a pressed shirt. That also made me a bit of a standout at Aldi. I usually see both extremes there: On The Way To Church, complete with jewels and hats, and at the other end, Just Rolled Out Of Bed (Wearing This). I figured I was close to the middle. The woman in line ahead of me was much better dressed: casual but elegant designer wear, coordinated but decidedly hip accessories. She had a big ol' cartful of food, buying several items by the case. People often shop there for church dinners, group homes, etc. I watched her unload two cases of canned soups, two cases of cereal, a case of sugar, a case of vegetable oil, a case of canned tuna, etc.

I said, "Gosh, you must be cooking for a big crowd." "Not really," she replied, and turned away. Contrary to popular opinion, I am capable of keeping my yap shut on occasion, so I just let it go. As she put the last item on the belt, she turned away from me and said quietly, "It's for a food drive." I respected her privacy, her modesty, whatever the heck it was, but inside I was doing backflips and cartwheels. Her bill came to over $90. (That's three weeks of groceries for me.) Like most people, I would just scrounge a can or two from the pantry -- some weird vegetable, something I bought accidentally -- but this gal was shopping for a food drive. It made me happy all day.

Maybe we shouldn't eat all the rich.

Shut Yer Pie Hole

Gum'mint 101: The reason we (society, civilization) evolved into systems of government is so that we could find civilized, adult, mature ways to solve problems and address differences. Those methods do not include telling a Senator, from the Senate floor, to go f____ himself. They do not include shouting "You lie!" at the President of the United States when he is addressing the country, as Rep. Joe Wilson (R-SC) did last night. In fact, those are perfect examples of what civilized, mature adults are not supposed to do.

If you can't wear big boy pants and behave yourself, you simply should not be in government. Period. End of Discussion. Apparently voters in his home district feel the same way; I heard on NPR today that his opponent has raised over $100,000 since Wilson's Big Boo-Boo.

Wilson is the Poster "Child" of the New Republican Party

Oh, and P.S. turns out Wilson is the liar. (Who's surprised?) According to MSNBC's Dylan Ratigan and Politifacts' fact-checker, Bill Adair:

Obama is right. When you look at the bill, it does go to some lengths to make sure that illegal immigrants do not get the credits for the health care exchange that would allow them to get free care. They'd have to pay for it, like everybody else. False for Wilson.