Monday, May 3, 2010

Update - if you wish

Hi all, Bro #1 here.

Nancy's final entry is exactly as she wrote it. If anyone would like to have an update, please write to If you prefer to let her words speak for themselves, they are more than adequate.

Please note that all the comments to her last post have been read and are deeply appreciated. Many thanks to all for your kind sentiments.

Saturday, April 10, 2010

So Long, Fare Well

Dear Friends,

Having enrolled with hospice this week has changed my perspective. I've been thinking about signing off the blog for quite awhile, and this feels like the right time. I can't believe it finally happened...but I really don't have much more to say! Oh, I'll miss ranting over major and minor annoyances, but you deserve better. My readers -- family, friends, and friends I haven't met -- have kept me going for more than two years. I never expected to be here this long, and I certainly never expected to find such a warm, caring community, especially in MM patients and caregivers.

Technology continues to amaze me: this little white box on my table, this seemingly inert piece of electronics, has connected me to an entire network of smart, kind, thoughtful people. Your good wishes and support have meant more to me than I could have imagined. I will leave the blog up for awhile, on the chance that there's anything helpful here for newly diagnosed MM patients. I will continue to read and occasionally comment on your blogs. But out of concern and respect for other MM patients and their loved ones, I'm going on the next leg of this MM journey on my own.

I have been touched and privileged to share my story and get to know you. I wish all of you great joy, peace, and most of all, good health. Fill your hearts with gratitude and forgiveness until there is no room for anything else. Be good to yourselves and each other.

The Coot

P.S. Now that he's had a taste of Guest Blogging, Bro 1 -- one of the two best brothers on the planet -- may occasionally pop in.

Wednesday, April 7, 2010

Gorgeous Day for Gardening

Hello all... Bro #1 here helping sis La Cootina with the blog. On Sunday, we were "attacked" by a small band of big-hearted gardeners. Though weather had been bad and forced a couple postponements, it was simply a picture-perfect afternoon. Like a colony of ants, everyone seemed to migrate to different areas (front yard, backyard, flower beds, perennial gardens) and they worked - and I mean WORKED! It was a wonderful group whose efforts are appreciated beyond words. And thanks to their efforts, the grounds of Villa Decay look simply marvelous...

Pictured (l to r) Kerry, Mary Ann, Doug, Bill, Pat, Gary, Jill, Randy, (front) Judy and Megan. Not pictured: Kelly.

La Cootina's words now:
"Good sports - every one of these ladies is very attractive, believe me! But after sweating in the garden for a couple of hours, it's not really cricket to point a camera at them, sans make up, sans hair triage. You can, however, still see how beautiful everyone's heart is."

Thursday, April 1, 2010

I've been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy "Honey-Do" list of chores. (The price for having skills and aptitude.) Although she's busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I'm not sure what I did to deserve such an incredible network of helpers, but I'm grateful for every one of them.

We're giddy with Spring Fever -- several consecutive days of 80º+ weather -- and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is "going to the dance." It's been a long time since we've been this excited about the NCAA championship.

I'm not sure the Rake-o-rama is going to happen. I've managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can't bring myself to pester these wonderful people again.

Go See...

Daily photo from Cairo/Giza
and in the lower right corner, links to Daily Photo blogs from other cities.
Original art and short-run prints by new and established artists and photographers, starting at $20!  Many sell out quickly; if you love it, buy it.
Mad cool wall stickers. House plants and goldfish that won't die, the chandelier you covet. My personal favorite? Kitsch, of course.

Monday, March 29, 2010

Easter Bouquet

Gracie's peeps took the girls to a Three Dog Bakery "Easter Begg Hunt" yesterday. Molly (left) and Gracie were dressed as spring flowers, in outfits that were a big hit at a neighborhood gala the week before.

They behaved themselves nicely and were the belles o' the ball. (At a previous TDB event, Molly stole Frosty Paws from any dog foolish enough to lift his head for a nanosecond.) There were bunnies galore, but our girls were the only spring daisies!

Thursday, March 25, 2010

The Best Peeps EVER

My wonderful Hoodies are at it again, providing two vital services that I can no longer do for myself. First, they chipped in for a housecleaner for a day. Yesterday, this woman started at one end of the Villa and slowly, thoroughly, made her way through 80% of the house. (The 80% was at my request. It would have taken a team of cleaners [and spider assassins] to tackle the basement.) I'm pretty sure my house has not been this clean since the day I moved in.

Vital Service #2 is another Rake-o-rama this coming Sunday. Most of the leaves were raked up last fall, but there are still plenty throughout the yard and flowerbeds. Plus twigs, plus millions of @#!! Redbud tree seed pods, plus billions @#!! Sweetgum tree spiny balls. And if they finish with all of that, two resident experts will help them determine what annuals should be pitched and what perennials should be cut down.

At my one other rakefest, (fall of '08, I believe) fifteen of my peeps showed up! They are such kind, generous, good-hearted people. That they would do this for little old me... well, it just fills my heart. "Thank you" isn't enough, but it's all I can offer right now.

Monday, March 22, 2010

Health Care Reform Murders Family, Blows Up Orphanage, Supports Terrorists!

Socialized medicine! Death panels! Government-funded abortions! In case the "Tea Baggers" have you truly frightened, this should comfort you: A Guide for Those Traumatized by Right-Wing Fear-Mongering Lies about Health Care Reform.

Although the so-called HealthCare Reform bill was watered down to the point of toothlessness, and the Seig Heil Uber-Right ended up getting almost everything they wanted, in the true spirit of crybabies everywhere, the TBs have taken public rhetoric to a new low. Honestly, I hadn't thought that was possible, but those ever classy "Tea Baggers" have again demonstrated their debating skills and righteousness by shouting "f*ggot!" and "n*gger!" and even spitting at House members who dared to defy god hisself by voting for that pathetic, tepid health care reform bill. This should erase any doubts about their intelligence.

Since they've provided a real insight into their motives and intentions, I think it only fair that the TBers be correctly addressed on the floor from now on. Instead of "We recognize the kind gentleman from Skankville...," let's switch to "We recognize the lying, hypocritical, scumbag..." No more "Gentlewoman from Stupidland." She will henceforth be "The shrieking, spitting hysteric." Yes, I'm actually looking forward to their next strategy: accusing us of name-calling and ad hominem attacks. In anticipation, I offer this reply, which even they should understand: "Neener, neener, neener!"


by Thomas R. Smith 

It's like so many other things in life
to which you must say no or yes.
So you take your car to the new mechanic.
Sometimes the best thing to do is trust.

The package left with the disreputable-looking
clerk, the check gulped by the night deposit,
the envelope passed by dozens of strangers—
all show up at their intended destinations.

The theft that could have happened doesn't.
Wind finally gets where it was going
through the snowy trees, and the river, even
when frozen, arrives at the right place.

And sometimes you sense how faithfully your life
is delivered, even though you can't read the address.

"Trust" by Thomas R. Smith, from Waking Before Dawn. © Red Dragonfly Press, 2007. 

More about Thomas R. Smith. What does health care reform have to do with poetry? A timely essay by Mr. Smith: A Guide to the Health Care Labrynth.

Friday, March 19, 2010

Brain Games

Keep a monkey (like me)  busy for hours!

Thursday, March 18, 2010


I went for labs yesterday morning. I'm almost equidistant from the downtown hospital and the suburban satellite clinic. I try to do ecerything except transfusions at the suburban clinic, not because of the distance, but the time/traffic/hassle of shlepping downtown, plus having to pay for parking. I can't believe that after paying thousands of dollars for chemo, transfusions, or whatever, they ding the patient for parking!

Anyhoo, it's not a long drive, and it's on a major thoroughfare, so I can usually get to the suburban clinic in 10-12 minutes. On the way there, and on the way back, I passed major, multi-car, ambulance-requiring accidents. Coincidentally, they were both in the opposite direction, so I wasn't caught in the ensuing traffic snarls, but it was frightening, even as a passer-by. And a reminder that we're all a second or two away from tragedy caused by a texting moron, a chattering bimbo, a distracted dingbat.

Although I was "borderline" I decided to get a transfusion today, and another dose of Aranesp. The transfusatorium was mobbed and I couldn't get an appointment until 1pm. If all the planets lined up, the whole thing should take about 3.5 hours, getting me out of there just before rush hour proper. For the first time in all my many visits... there were kiddies in there. Not one, but two. Not as patients, but stuck with accompanying visitors.

Honestly, one of my perpetual rants is against people who seem to think that hiring a sitter is some kind of child abuse. Either they're too cheap, or too lazy, or incapable of separating from their child for a few hours. Whatever; the people who drag their kids everywhere just set my teeth on edge and make me sit on my hands to resist dope-slapping them. And of all the annoying, inappropriate places these copter moms drag their poor kids to, this has GOT to be the most ridiculous. Why would you drag your otherwise healthy kid to a germ- and vermin-ridden hospital, and force them to sit for several hours, to the annoyance of scores of SICK people?

The four year old little girl, bless her heart, was good as gold. Her hair was in the Little Black Girl 'do, with a dozen little braids springing from her head. But some genius put bands with square plastic bobbles at the base of each braid. I couldn't imagine trying to lay back and sleep with a head full of those things. I was also freaked out that her great-gran (who was probably about my age!) had three-inch fingernails. I know I'll have nightmares about those. Anyways, between the television and a hand-held video game, she stayed quiet and amused through her mom's afternoon-long ordeal.

The one that really got me was the little boy, maybe a year old. I didn't see who his mom was accompanying - a husband, sister, friend? Doesn't matter. I can't come up with any reasonable excuse for shlepping that baby to the hospital. He was a new walker, and just wanted OUT of that goddamned stroller. And every time I dropped to sleep, he let out a shriek.

Of course, my fun wasn't over. I should have beaten rush hour by several seconds, but I got in a traffic mega-snarl. (Thank goddess I'd made a pit stop before leaving the hospital.) More than fifteen minutes to go a single block; no way out! The reason, I finally discovered was that some rookie genius pulled a car over on a major thoroughfare. He did not have the sense to direct this car around the corner for ticket-writing, and instead backed up traffic for miles and miles. When I finally finally finally got out of there, it really was rush hour. Not the end of the world, but a 35-minute stressfest instead of a 20-minute cruise.

When I finally got home, I laid down on the sofa and didn't move for three hours. I think it may be time for me to stop driving.

Tuesday, March 16, 2010

Where Are They Now? Disney Princesses

I'm a lifelong Disney fan, and I've often wondered what happens to these girls after their stint in the limelight. How do you follow up a princess gig? Wonder no more:

Snow White
Sleeping Beauty
The Little Mermaid

Friday, March 12, 2010

Things I Found #4: Bring Me Calvin Klein's Head on a Stick

Another essay from the last writing class has bubbled to the surface. This dates me terribly, because Calvin Klein has gone from avant-garde, enfant terrible, to a "mature" designer considered to be a classic stylist. But when he first started making headlines, he gave me headaches.
Am I the only person who feels that Calvin Klein is responsible for the decline and fall of Western civilization? Maybe I just resent him because he officially stamped my passport into Old Farthood.

I was vaguely aware that Calvin Klein's name was appearing on people's asses in the first wave of something called Designer Jeans. (Previously there were only Levi's and, if you didn't know any better, Wranglers.) Designer Jeans were meant to look as though they had been airbrushed onto your body, and the trendoids, male and female, began cramming themselves into pants two sizes too small, trying to look blasé and aloof although they were also bug-eyed and breathless.

I wasn't too alarmed. I was still a renegade, unwilling to give up my buttery soft, faded-to-baby-blue Levi's for the crisp, navy full-length trusses called designer jeans.

But Calvin wasn't happy just being a prestigious tush flag. A cultural visionary, Cal knew we were right there on the cusp of becoming a nation of sheep, eager to jump on the bandwagon of any ludicrous trend that two or three insecure suck-ups now pronounced Officially Cool. Calvin decided the time was right to branch out, and burst into my consciousness with commercials for a perfume called Obsession.

Obsession! Calvin Klein wanted us to smell like a personality disorder, a state of mental unbalance. "He broke my heart so I slashed his tires and burned down his house. Obsession." And I just didn't get it. I was no longer Talking the Talk.

Next was Infinity. Cal thought we should smell like mathematical concepts promoted by glassy-eyed anorexics, like Kate "I only eat tiny bits of" Moss. And I realized I was completely clueless about this campaign, too. I was once the drum majorette for hip, anti-establishment thinking and behavior, the poster girl for non-conformity. Now I sounded and felt like my parents: "What are they talking about?"

I grew up with Evening in Paris, Joy, Chanel, and for naughty girls, Tabu. And the models smiled, or at least offered a smoldering come-hither look. Wouldn't you want to sell perfume -- a luxury item -- with images of style, glamour, allure, success, romance? But no, here was Cal peddling his wares with greasy-haired scowling waifs and apparently that's what we wanted, because we made him a gazillionaire!

The new campaign was for something called CK1, an apparently transgendered scent with the brilliantly succinct catch-phrase, "Just be."
Just be? Come on! What's the alternative? Just don't be? I guess if you just not be, you be dead, and it wouldn't much matter what you smell like.

Maybe Cal has forged a bold path of marketing strategies into the obtuse, the obscure, the downright silly. If that's the case, if I've finally "gotten it," I'd like to offer a few suggestions for his next perfumes:
Yo, I din't do it. Bring me some smokes.
Calvin Klein's ... INCARCERATION.
No, I'm full, really. Be right back.
Calvin Klein's... BULIMIA.
Party like you mean it. Jimi and Janis. Yeah, dude.
Calvin Klein's ... HEROIN.
Fabulous. Gotta take this call, babe. Ciao.
Calvin Klein's...SUPERFICIAL

I think I just launched a new marketing career! Do I look younger? Wait a minute - how about when I scowl?

Things I Found #1
Things I Found #2
Things I Found #3

Thursday, March 11, 2010

More Spring Teasers

Here's a first for the Villa: Snowdrops blooming... on March 11! The snowdrops are "volunteers," meaning I didn't plant any seeds or bulbs, they just suddenly showed up. In Molly's yard, no less. Tiptoe through the poo piles.

My picture is so bad, I went to Google Images to find a better one. (By the way, I make an effort to find pics that are not copyrighted. Apologies if I've erred.)

Along the way, I found this mad cool floor lamp inspired by the snowdrop. My sister and I are both lamp-a-holics, and this one just sends me right over the edge.

Tuesday, March 9, 2010

Indian Spring?

Friday night I had dinner with Gracie's humans, a lovely dinner highlighted by fresh Gulf shrimp from their recent trip. My appetite is still pretty small, but I will always make room for fresh shrimp. It is the one food I think I could eat til I burst, and showing any restraint or courtesy is a huge challenge. (I came home to find the Bims in mid par-tay, and had to park at the end of the block. Thanks, girls. Looking forward to Karma returning the favor.) Saturday night, we gathered at a cable-enhanced Hoodie house to watch the Butler Bulldogs. They had a rough first quarter. As I expected, they rallied almost as soon as I called it a night and headed home. I believe that made Consecutive Win #19!

We are having what I might call Indian Spring...some gloriously warm and sunny weather, but don't expect it to last. I've tried telling my daffodils and tulips that it's a ruse, but they insist on reaching for the sun. Molly and her friends have been enjoying much longer walks. I can hardly believe it, but Molly turned 9 years old last week.

A friend told me that her elderly mother, when asked what was new, would always answer, "Nothing, thank god!" I have a new appreciation for that reply. Other than pain, fatigue and sleeping issues, which have been with me all along, I'm still managing fairly well. I know that may change at any time, and I have a new appreciation for each day that I'm able to manage on my own.

Here's a funny from Bro 1. It always cracks me up to imagine how our pets view us:
P.S. Still no sign of the noctural mammal.

Monday, March 1, 2010

Things That Go Bimp In the Night

Mom & Dad were here for a wonderful visit, but left just a day before some excitement at the Villa! First, I need to back up and tell you about when I first went to look at Miss Molly, almost nine years ago. Her "foster father" came to the door and before he even let me in the house, asked, "You don't want a dog for protection, do you?" No, I assured him, just companionship. He let me in, and I fell in love with this little mutt, who we now know is actually half dog/half chicken.

I was awoken by something last night. I'd taken a sleeping pill, so my brain had to work hard to rouse me. I was vaguely aware that there was Something in the bedroom with us. Molly didn't even bark. She just looked at me as if to say, "Hey, you better check that out." As I forced my fuzzy brain toward consciousness, I realized...there was a bat in my bedroom. (I didn't get hysterical because this was
actually the Villa's third bat, but the other two were 20+ years ago. Please read about them here; it's relevant.)

The bedroom door was open and I saw it fly into the living room. I closed the bedroom door, and went into the kitchen to prop open the back door. Supposedly, bats don't want to be indoors, and if you open a door or window, they will find the fresh air and get out. I sat in the living room for half an hour, watching this stupid bat fly back and forth, back and forth. I knew I was destined to fall back asleep soon, so I closed the door, opened a living room window about 6" (it was about 15º outside!) and went back to bed, closing the door tightly behind me.

I haven't seen the bat since, and I hope he found his way outside. I'll find out soon enough if he didn't.

Tuesday, February 23, 2010

Happiness (Reconsidered)

by Judith Viorst

Is a clean bill of health from the doctor,
And the kids shouldn't move back home for
more than a year,
And not being audited, overdrawn, in Wilkes-Barre,
in a lawsuit or in traction.

Is falling asleep without Valium,
And having two breasts to put in my brassiere,
And not (yet) needing to get my blood pressure lowered,
my eyelids raised or a second opinion.

And on Saturday nights
When my husband and I have rented
Something with Fred Astaire for the VCR,
And we're sitting around in our robes discussing,
The state of the world, back exercises, our Keoghs,
And whether to fix the transmission or buy a new car,
And we're eating a pint of rum-raisin ice cream
on the grounds that
Tomorrow we're starting a diet of fish, fruit and grain,
And my dad's in Miami dating a very nice widow,
And no one we love is in serious trouble or pain,
And our bringing-up-baby days are far behind us,
But our senior-citizen days have not begun,
It's not what I called happiness
When I was twenty-one,
But it's turning out to be
What happiness is.
We didn't need another reason to love Judith Viorst, but here's one anyways. Priorities, perspectives and definitions shift and change as we age and, hopefully, mature. The first sentence resonates like a giant brass gong. Would anyone in their 20s, or even 30s have put a clean bill of health first on the list? Now I can't imagine anything else. I think happiness may be the absence of strife, trauma, etc., and the ability to appreciate that absence. I know it's a lot simpler that most folks realize. What do you think happiness is?

(Good insights at The Happiness Project; see cool sites at right.)

Friday, February 19, 2010

Go See...

  • Lists, lists, lists - Time Magazine's best and worst, top travel gadgets, top toy crazes, top Pat Robertson gaffes (how to narrow it down!), best Super Bowl moments, there's something for everyone.
  • The surprisingly mediocre "Best of the Worst" Blog led me to these Houses of Horror, which led me to a second batch. I have to say.... I like most of them, especially the row houses! (Let me tell you: I know what makes for crappy neighbors, and the paint job isn't even on the list.)
  • Street Installations - Mark Jenkins is no Christo, but I like art that startles and challenges.
  • When the headlines get you down, the Chicago Tribune will lift your spirits with their page of Happy News.

Sunday, February 14, 2010

Oh, Canada!

I only watched a few minutes of the Olympics' Opening Ceremonies. I don't even think they should televise the "Parade of Nations." Come on, other than the athletes' parents... who wants to watch that?? BUT... I happened to catch what may have been the best moment (at least, one of the best moments) of the entire Canadian- style extravaganza: Shane Koyczan reciting his poem about Canada, "We Are More."

If you missed it, here you go.
We Are More - video
We Are More - transcript

More, indeed. Somehow Canadians managed to become more genteel, more sophisticated, and more polite than their neighbors to the south. Their cities, at least the ones I've visited, have that European aura of cooperation and respect. And, of course, their government actually seems to work for its citizens, rather than its lobbyists. I won't be watching much of the Olympics, but there is plenty to love about Canada. (Pretty much everything except the weather. You can't have everything.)

Friday, February 12, 2010

Merci, Gracias, Todah, Thank You

...for your kind words and good wishes. I know they are heartfelt, and I return them to you a hundred-fold. Some readers who are not comfortable adding a comment (or haven't figured it out) have sent notes that also mean so much to me. You lift me up on a cloud of kindness and my aches and pains seem to disappear.

You're all making me out to be much more noble than I am (which is: not at all) but I'm going to simply enjoy the view from the cloud. I will continue blogging, at least for a while, and when I do sign off, I will leave the blog up in hopes that there is something helpful for other cancer patients. Thanks again,
The Coot

Wednesday, February 10, 2010

Buckle Up for The Medicare Labrynth

I've spent the last two days on the phone with the friendly folks at Medicare. Seems I've been on disability long enough that I'm eligible and -- unless you tell them, "no thanks," -- they sign you up automatically.

So I spent a half day wading through Part A, Part B, and the exceptionally confusing Part C, and a day and a half on Part D, which is prescription drug coverage. It has got to be the greatest shame ever foisted on the American public, and I defy any Congresspig to explain it to their grandchildren. Of course, they couldn't. How on earth did this debacle, this tragedy, this bloody abortion of a prescription drug plan ever get passed? It boggles the mind.

There are prescription-drug-only plans and prescription-drugs-plus plans (which may include vision or other coverages.) After providing a list of my daily meds, the Medicare Rep told me about what the computer says is the best plan for me. But one drug was in dispute: I said there was no generic equivalent, the computer insisted there was. Many phone calls later, I prove I am correct, but the computer won't let the agent (a different one, of course) override the generic option. Of course, there has to be a way, I insist ten times. After the eleventh plea, Ms. Helpful finally talks to a supervisor and finds there is, indeed, a way to do so. And the chip on her shoulder grows exponentially.

Now I have a new price for the recommended plan but, she explains, it's only good until I hit the infamous "donut hole." (I won't even try to explain this to you, even though I finally understand it, although I still don't understand whether the criteria for reaching it is based on what I've spent or what Medicare has spent.) But yesterday, I say, I was told this plan has no donut hole. Every plan has a donut hole, Ms. Helpful insists, and not five minutes later, she's trying to explain a different plan which has no donut hole. I just don't have the stomach to point it out.

After getting off the phone and doing lots of calculations based on information that may or may not be correct, it appears that my DieSuckah Health Insurance policy is actually very close to my true cost of Medicare. And at least I've met my deductible for the year, and at this point I know what is and isn't covered -- including that disputed prescription which I take daily, which doesn't have a generic, and which, until I hit the deductible, costs me $500/month.

(This is true now, but I will be getting my annual premium increase in April, which has been running close to 20% per year, in which case, Medicare probably will be the better option. But -- get this -- if you don't sign up as soon as you become eligible, the Part D premium goes up every month. Sooo... it's impossible to know which will be the better value in 60 days.)

I've wasted two days of my life just sorting it out and coming to this conclusion, although as I said, I don't have much faith that I'm basing my calculations on correct data. Oh, boy. Who would have thought -- it seems our friends in the federal government may have provided me a raison d'etre after all.

My new goal is not only to campaign for health care reform, but to strip our Congresspigs of their gluttonous plan, which includes donations to their election campaigns, luxury travel, and complete health, vision, dental, botox, shoe shines, massages and prescription coverage for themselves and their families, staff, neighbors and acquaintances, for their whole lives and at least one afterlife. It doesn't seem fair, does it?

Monday, February 8, 2010

Big C Update

I've put this off for more than a month, folks. It's like a tape I could just play for you over and over. But this time, there's a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it's the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I've already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I'm pretty sure this "cure" would kill me.

Being a good girl, doing as I was told for the last two years -- especially when it was contrary to all my instincts -- has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn't seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn't see the need, I did get a second opinion this fall. I've been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I've decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I'll be switching to what they call "palliative care," which is just treating the symptoms as they arise.

I'm hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I've still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don't improve a whole lot from where I am today, just knowing that I don't have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I'm finally giving in to that inner voice, and it's telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don't really care, so please have the manners and good grace to keep it to yourself.
P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the "best possible outcome" has changed a little. MM patients and their loved ones don't need the details of my particular situation, so this is my last MM post.

Sunday, February 7, 2010

Endless Winter

This is one of the longest cold spells I can ever remember here. I'm not sure of the exact number of days, or the official snowfall totals, but I believe it's been below freezing for about a month. And we've had 4-5 snowfalls of at least 4-6". We still have about 8" of snow on the ground most places. The main roads are clear, but the side roads are icy and treacherous. There's no end in sight right now: we've got at least another week of below-freezing weather predicted, and another snow coming this weekend.

It's not much by Minneapolis standards (or even my hometown), but in these parts, that's a lot. And being mostly housebound means I'm completely without excuses for this mess...

(Cousin #3 & Sis bundled up for sledding.)

No Joy in Snowville

Our Colts pranced all the way to the Superbowl only to get whupped, and whupped hard. I'm not a rabid fan, and I don't mind losing, but boy, it honks me to lose to a team called The Saints. First of all, with a name like that, shouldn't they win every freakin' game? And I know they were named before the Age of Political Correctness, but I'm sort of surprised the name has lasted this long. Sour grapes aside, there's no question that they played the better game and deserved the win. It was nice, though, just to get that far and make it to the SuperBowl.

Another local team is getting some notice. The Butler University Bulldogs have won 12 in a row. In fact (I'm sure someone will correct me if I'm wrong), I believe they've made it to the Sweet 16 the last few years. I've got a soft spot for the team and the school - it's Dad's Alma Mater and the site of Mom & Dad's meeting. So... Go Dogs!

Friday, February 5, 2010

Bats One and Two

I embarked on some painting and remodeling shortly after moving into the Villa. I had a guy helping me, and one evening I noticed he'd left a dirty little rag on one of the cupboards. That wasn't like him -- he cleaned up every day before leaving -- and right before I touched it, I noticed this dark little rag had a face!

I called a friend who lived nearby. "Save me from a little critter!" I said, clearly implying that a Real Man wouldn't leave a damsel in distress. He came over, we made a net out of a pillow case and a hanger, and sure enough, he was able to gently scoop the bat in, and take it outside to release it. The friend moved away shortly thereafter; I'm sure there was no connection. Yah.

Three years go by. I was in the living room watching tv with a guy I was dating; we'll call him Milton. Suddenly a little bat swooped across the room in front of us! My dog and I ran for the bedroom with Milton at our heels. "Wow," he said, "What are you gonna do?" he asked. Is he kidding? As I shoved him through the door, I said, "I'm going to wait here while you get rid of it!" (What is it with guys nowadays? They have to be goaded into chivalry.) Many minutes of grunting, running, panting, and cursing went by. He finally knocked on the door, and I opened it to find him puffed with testosterone.

"It's safe to come out now," he said. "I think it flew out the window." "You think it flew out the window? Or you know it did?" "I'm sure, come and look. He's gone."

It was gone. That should have been the end of The Tale of Bat Two. But it's not. Fast forward about five years. My parents are again visiting, and we're watching Antiques Roadshow. My dad commented that he'd always wanted to learn more about Grandma's Big Vase, which has sat on top of my corner cabinet since I moved to the Villa. He thought it was worth a lot of money.

"No, Dad," I protested, "I'm almost sure that it's post-war Japanese. I don't think it's that old." "Let's see if there's a mark on it," he said, and pulled a chair over to reach the vase. As he tipped it upside-down to check for a manufacturer's mark, out tumbled... a skeletonized little bat.

With gloves, plastic bags, and manly bravery, Daddy made the little skeleton go away. I had to endure just a tiny bit of teasing about my housekeeping skills. But I haven't looked in the Big Vase since then, and I'm sure not going to now.

Thursday, February 4, 2010

My Uncle Bennie passed away yesterday. He had defied the odds, and many predictions, for the last few years. Even before that, he'd had some physical challenges including several hip replacements, losing an eye, and being on dialysis. But for most of his life, he was very fit, an amateur athlete who excelled at handball, softball, and bowling. Just as my Auntie was like a second mother to me, Uncle Bennie was like a second father. Our families lived one block apart. I went through Sunday School and Hebrew School with my cousins and we often vacationed together.

As a kid, I didn't understand why my Dad was absent so often, but I was lucky to have Uncle Bennie in my life. He taught me how to swim, and ride a bike, and ice skate. He coached my brothers in every sport. He sometimes built a home-made ice rink in their backyard to help us get through those long winters. I thought he was movie-star handsome, a fact that was confirmed by my best friend, who always wanted to play at their house instead of mine.

It took me a long time to find these pictures, probably because Uncle Bennie was usually behind the camera. The smaller picture is at Bro 1's endless Bar Mitzvah gala. Auntie and Uncle Bennie on the left, my folks on the right. The photo below of the whole clan is so old that the little boy in front (Uncle B's first grandchild) now has three children! I am third from right, and Uncle B is second from right.

Uncle Bennie was devastated when my Aunt died at age 52, but his three daughters and their children were the light of his life. (He did find love later in life but sadly, his second wife lived only a few more years.) Uncle B took up painting and ballroom dancing in his later years. I marveled at his energy, creativity, and interest in the world around him. In spite of the difficulties he endured, Uncle Bennie was a gentle, kind and pleasant person who always saw the best in others. The world has lost another quiet hero.

Monday, February 1, 2010

Debunking the Positive Thinking Terrorists

Just a quick note: Bright-Sided by Barbara Ehrenreich is fabulous, even better than I expected. I'm tempted to quote the whole book, or at least the chapters on cancer, which are brilliant, insightful, and tremendously comforting, but I'll just share some blurbs from the jacket:

...The people who are sick or jobless – why, they just aren't thinking positively. They have no one to blame but themselves. Barbara Ehrenreich has put the menace of positive thinking under the microscope. Anyone who's ever been told to brighten up needs to read this book.
– Thomas Frank, author of The Wrecking Crew and What's the Matter with Kansas

Oprah Winfrey, Deepak Chopra, Andrew Weil: please read this relentlessly sensible book. It's never too late to begin thinking clearly. 
–  Frederick Crews, author of Follies of the Wise

...America's cultural skeptic Barbara Ehrenreich turns her focus on the muddled American phenomenon of positive thinking. She exposes the pseudoscience and pseudointellectual foundation of the positive thinking movement for what it is: a house of cards. This is a mind-opening read.
– Michael Shermer, author of Why People Believe Weird Things

Get it, read it, love it. Better yet - buy it for a cancer patient.

Friday, January 29, 2010

After Years

by Ted Kooser

Today, from a distance, I saw you
walking away, and without a sound
the glittering face of a glacier
slid into the sea. An ancient oak
fell in the Cumberlands, holding only
a handful of leaves, and an old woman
scattering corn to her chickens looked up
for an instant. At the other side
of the galaxy, a star thirty-five times
the size of our own sun exploded
and vanished, leaving a small green spot
on the astronomer's retina
as he stood on the great open dome
of my heart with no one to tell.
This reminded me of something I posted last year. I wonder, if you've spent a decade or two (or more) with a partner, do you forget what this feels like? Or do you remember, and appreciate the flood of gratitude at having found someone?

Ted Kooser is one of the nation’s most highly regarded poets and served as the United States Poet Laureate Consultant in Poetry to the Library of Congress from 2004 - 2006. During his second term he won the Pulitzer Prize for his book of poems, Delights & Shadows (Copper Canyon Press, 2004).

Why Borange?

From whence cometh the blog name?

When I was a 'tween and Sis was 5-6 years old, I told her -- with the usual pomposity and condescension reserved only for her -- that nothing rhymes with "orange." Without even looking up from our little arts & crafts table, she said, "Borange." Ha! With the usual indignation reserved only for her, I said, "Borange isn't a real word!" And she replied, "You didn't say it had to be a real word," leaving me sputtering in a stew of pomposity and indignation.

I don't know why I remember this 100 years later, but it stuck with me. I wish she'd disagreed with me more often. I wish I'd told her that I loved it when she disagreed with me.

Unfortunately, some schmuck named Bob created a blog called "Borange"... eight freakin' years ago. He's never posted anything to it, but apparently Google will let you leave up a blog forever, even an empty one, and hog the blog name forever. So the "real" name of my blog is LaCootina, a pseudo-Spanish diminutive of The Coot, which Joyce started calling me 10-20 years ago. The subtitle is "Because I said So," because -- of course -- that blog name was already taken, too. The most recent statistics I could find (after 17 seconds of grueling, in-depth research) indicated...
"Blog search engine Technorati says it's now tracking over 70 million blogs, with 120,000 new blogs created every day. Gartner predicts that sometime in the first half of 2007, the number of bloggers will peak at 100 million."
Figuring the web grows exponentially, there are probably 3-500 million blogs by now. I bet 7 million of them are empty blogs, hogged by Bob the Schmuck.

Friday, January 22, 2010

Good Friday

Went for a Zometa fix yesterday, and the labs showed I'm finally making a little hemoglobin and white blood cells; no transfusion required. (Red cells and platelets are still lagging.) One stick for labs, one stick for Zometa. One very quick and painless shot of Aranes (Arasep?). I guess it's all in the wrist. Hallelujah.

A dear friend recovered from a long relationship with a true Bad Boy. She found herself a Real Man a while ago, and last weekend, they eloped in Vegas. Hooray for true love... and common sense.

Another friend has committed to a trip to Europe next year - her first. She also committed to getting healthy and dropping some pounds so she'll be in peak condition to enjoy the trip. Hooray for courage, adventure, and taking care of yourself.

Tuesday, January 19, 2010

Shaun & Chéri

I've had a slew of bad-to-mediocre movies from Netflix lately; the notable exception was 8 episodes of Shaun the Sheep: Back in the Ba-a-ath. It's another claymation masterpiece I've seen occasionally on the Disney channel. The DVD was laugh out loud funny. If you're a fan of Wallace & Grommett or Rex the Runt, don't miss Shaun.

It's not often I recommend a bad movie, but here's a real stinker for you: Chéri, starring Michelle "Duck Lips" Pfeiffer and Kathy Bates. Based on a tale by the infamous Colette, this is the story of an old ho (Bates), her son Chéri, and a not-quite-as-old ho (Quacky). In her early retirement, Quacky* takes in Chéri and they live together for five or six years, but when he agrees to an arranged marriage -- to the daughter of yet another wealthy old ho -- Quacky decides maybe she really did love Chéri after all.

There's lots of tedious posing and brooding, but most troubling to me was Rupert Friend, the actor who portrayed Chéri. He wasn't just "not my type," I found him repulsive. Maybe it's a Continental thing, but I do not get the attraction for these wormy-white, sunken chested, dirty-haired, uber-effeminate types. I guess I am waaay out of touch with what's sexy nowadays. Gimme a beefy Gregory Peck or Cary Grant any day. Anyways, his sulky, androgynous, wooden character made it impossible for me to believe this was a love story or anything close to it. It doesn't seem possible that this film reunited the writer, director and actress who collaborated in Dangerous Liaisons, another rich period piece but one that was filled with passion and drama.

So why on earth am I recommending this stinkbomb? Because despite all of the above, the movie is gorgeous. It is set at the apex of La Belle Époque, the gilded age. I'm actually swooning as I remember the clothes, the jewelry, the hats (such hats!), the furniture, the cars, and more. The gap between the haves and have-nots was becoming a huge chasm during this period, but oh, to be a have! It is a sumptuous visual feast... I recommend watching it with the sound off.

*Quacky's character was named Len, or Leah, or Lee, or Laird, depending on who's speaking.
"Okay, Aunt Crankypants, are there any actresses you do like??"  You betcha! Diane Lane, Sandra Bullock, Susan Sarandon, Tea Leoni, Audrey Tatou, Emily Blunt, Charlize Theron, just to name a few.

Tuesday, January 12, 2010

Big C Update

I knew even before I went for labs yesterday morning that I'd be sent downtown for a transfusion. Not because of increasing fatigue or a half dozen other symptoms, but because the BABONG BABONG BABONG headaches were back. Tylenol doesn't touch it, and if I drop something on the floor, I just leave it there.

Sure enough, I got the word to head downtown. I stopped at the Villa to let Molly out and to inhale some lunch -- remember: avoid hospital food at all costs! -- and was at the Transfusatorium by 1pm. Except they still didn't have my "Type & Cross" (which was drawn at 10am) and once that's done, it takes at least an hour to get blood... I was looking at a 2-3 hour wait before I even started the transfusion. I decided that my aggravation threshhold had been reached for the day and insisted on coming back the next day (today). So the trip wouldn't be a total waste, I let them draw a second sample for a Type & Cross in case the first one vaporized, and I got a double dose of Aracept - one in each arm. I think this stuff is supposed to help me grow red blood cells. But for some reason, the shots feel like they are given through a rusty, barbed harpoon that's been dipped in vinegar. Because of the size of the dose, I had to get one shot in each arm. Lots of gasping and deep breathing.

I knew I was taxed to my limit so I asked one of my wonderful hoodies, Bill, to drop me off and pick me up and he graciously obliged. Today, I went in at 9:30am and was done at 12:30pm, which was much, much better than the 7-8 hour ordeal I would have endured the day before. I expect to be feeling much better in 24 hours or so, but I don't know how much longer I can keep doing this: the horrible chemo, the transfusions, the nausea, the excruciating shots. When I see Dr. A, I hope I have some very impressive numbers to persuade me to keep going.

Sunday, January 10, 2010

Coq au Vin avec Les Hoodies

I finally saw Julie & Julia last week and fell in love, like most people who saw it. Most of my hoodies are already Francophiles and I think it's safe to say that most are now also Juliaphiles. The acting was first rate, the scenes of Paris in the 50s were enchanting, and the food... oh, my goodness, the food really did verge on "food porn." I also thought the bonus features on the DVD were as enjoyable as the movie. There were funny and fascinating interviews with the actors, the author, the director.

Hoodies Kerry & Mary Ann also saw the movie last week, and were inspired to host a French dinner. With Supernurse G's permission, I was able to join them. I've been in near-isolation for at least a couple of months. I've missed my pals, and probably several outstanding meals, too. Before I could graciously extricate myself, I was caught in a round of hugs. I just decided just enjoy the hugs, hoping there won't be consequences. Mary Ann's Coq au Vin got several rounds of applause, and my presence was noted and toasted, which embarrassed me but filled me with warm fuzzies. That has got to be good for my immune system, right?

Thursday, January 7, 2010

Winter 1.02

Well, hush my mouth and call me Frosty! We've gotten about 4" of snow so far, and it sure looks like we could get another 2" or so. As far as the weather hysterics: yeah, even a broken clock is right twice a day.

While trolling for weather news, I see gas is predicted to hit $3/gallon within days and $4/gallon by summer. Anyone else hear this? I thought we were beyond the price gouging...

Wednesday, January 6, 2010

Winter 1.01

Brrr! The winter winds are a'blowin' here, and probably where you are, too. Monday was even more of an adventure than I'd expected. It was my first time driving in almost two months. Sis has been toting me to & from appointments, but she went back to work this week, so I thought I'd give it a try before imposing on my second tier of volunteers.

All was fine but I noticed the "low air pressure" light was on -- again. I've had my brand new tires in twice already for slow leaks. When I got to the clinic, sure enough, one tire was way, way low. After my labs, I decided I'd better get some air before I even tried to drive to Cheapo Tires. It was about 7º and snowing. Short version: I went to one, two, three, four stations before I found a working air hose. By then, I was close to home again so I stopped to grab lunch and make an appointment at Cheapo Tires. Turns out it was the old screw-in-the-tire and it was a pretty quick fix, all still under warranty. I decided to push my limits and make a quick stop at the grocery, also my first in several months.

Well, I got it all done, I'm proud to say, but Tuesday I was practically in a coma and today was only slightly better. But the good news (!) is per the results of Monday's tests, I did not need another transfusion. (Oy, the things I celebrate these days.)

I think I've had four, or maybe five, transfusions already. The last time,* I was already so weak, I couldn't even walk; sis had to tote me around the hospital in a wheelchair. The printer at the blood bank jammed and no one noticed for an hour, so it took even longer to get my blood & platelates. I was there from 10am until 5:30pm. While I concede that I feel better -- lots better -- 24-48 hours after a transfusion, I still dread them. Up to seven hours trapped in a giant lounger that makes me feel like Edith Ann. (Anyone remember?)

Winter marches on. The weather hysterics are predicting 4-6" of snow here. Since I even put Hondo Banal in his spiffy remodeled garage tonight, odds are we'll probably just get a dusting. Stay warm!
*The poor guy next to me was having his first-ever chemo experience. His wife & Horrible Daughter were there, ostensibly for support, but only my IV prevented me from vaulting out of the chair and dope-slapping HD several times. After about two hours, she actually harrumphed loudly and said, "Gimme some cash. I'm so bored, I'm going to lose my mind if I have to stay here one more minute!" Yes, her father's chemo was a terrible imposition on her. Did I mention she was about 25-30 years old?

Friday, January 1, 2010

Happy New Year!

2009 wins for Suckiest Year Ever and there are no close contenders. I began the year still recovering from the Stem Cell Transplant, but back pain from a severe compression fracture and other deterioration issues led me to seek relief through surgery. In the weeks after the surgery, I was elated at my pain relief... and then learned that it was mostly due to the anesthesia still wearing off. When it was all over, there was still significant improvement, but nothing near what I'd hoped for. A month or so later, I received the news that I did not achieve remission; more chemo would be needed. After five or six months of Velcade, plus steroids (plus diabetes/insulin/insanity), Doc A awarded me a "treatment holiday" that turned out to be all too brief. Less than two months later, I was told the cancer has not slowed much and yet more chemo was needed.

Doc A put me on a Clinical Trial for a relatively new drug. At the time, I was eager to comply because this drug did not require steroids to be taken with it. However, I was handed off to Nurse R and it's a gross understatement to say we had no rapport. The clinical trial involved two grueling 12-hour days in the hospital as well as weekly labs and lengthy, tedious, idiotic questionnaires. After two months of this, plus feeling nauseous pretty much every single minute of every single day, my lab results were mixed, at best. The opportunity was presented to quit the clinical trial and I gleefully accepted.

If I'd known what was next, I wouldn't have been quite so gleeful. Cytoxan, so far, is worse than all the others rolled together and then some. Thus far, I've needed four transfusions of blood and platelets, plus uber-ouchy shots, just to keep me alive for more torture. Each transfusion is a marathon: When results from weekly labs are returned, I am sentenced to 4-6 hours in a barcalounger designed for someone twice my size.

My family and a few friends are still on the front lines with me, but this sure has been a tedious, atypical experience. Initially, I think we all expected that I'd get my chemo, grow my hair out and ride the remissionmobile for a decade or more, like all those breast cancer superstars. So the pals who are still in touch are just that much more dear to me. And I hate to second-guess my medical team by I wonder why we've been jacking around with slingshots for 2+ years if I needed the cannon all along. What if we'd started with this Cytoxan monster? You can "what if?" yourself right into a straightjacket in no time, so I try to stay away from that little detour.

Speaking of detours, my train of thought jumped the track there. My point was that I know without any doubt at all that 2010 cannot possibly be the Suckiest Year Ever, and that is cause for celebration. I hope we all have lots and lots of other reasons to celebrate, too.
P.S. Just for giggles, here's Dave Barry's 2009 Year in Review.