Sunday, August 31, 2008

Go See...

BOOK SCULPTURES - On one hand, I hate to see any book desecrated, ever. On the other hand, if these books were destined for the trash heap, they've found new lives as works of art.

Noriko Ambe - Cutting Book Series
Nicholas Jones - Book Sculptor
Dark Roasted Blend - Unusual Books & Book Sculptures
Flickr - books and book sculpture
Brian Dettmer - Book Sculptor

Spring in the Blue Ridge

Bro 2 lived in North Carolina for awhile, and it was always a treat for this midwesterner to go visit him. The North Carolina that I saw, primarily western and central, was incredibly beautiful: smoky blue mountains softening to gently rolling hills, mile after mile of jewel-toned rhododendrons or "rhodies."

I fell in love with Asheville, as does just about everyone who visits, but I fell in hate with Biltmore; it struck me as pretty creepy. The idea of massing that level of wealth during the early industrial revolution, when thousands of families struggled just to put food on the table. I don’t deny its beauty... but what a monument to excess, to conspicuous consumption, to an almost-successful attempt to establish a class system in the USA. On a spiritual level, I found it horrifying: let them eat cake, indeed. But Asheville? If it’s not the most beautiful city in the U.S., it’s in the top five.

On another visit, we enjoyed a several-day timeshare on Lake Lure, which has to be one of the best-kept secrets in the country. Again, spectacular scenery, painful paradox between new wealth and old poverty.

Bro’s home base was Winston-Salem, or WinSay, as the locals call it. There’s a lot of construction going on as it becomes more and more “discovered,” but the city itself retains its original character and charm.

Even more than the scenery, which usually ranged from lovely to spectacular, I really fell for the people of NC. I know, there are good people and bad people every-
where, but in NC, most people were friendly and caring, interested and interesting.

We had a few laughs, Bro and I, over the language barrier. It’s more than a lilt, more than a twang, at least to our midwestern ears. I always think of the following exchange with his company’s receptionist, one of Bro’s first conversations after moving to WinSay.

Her: Didja see them flares on the highway today?
Bro: Flares? No, I didn’t see them. Was there an accident?
Her: No, it was flares, all along the highway!
Bro (confused): Flares.. all along the highway... was it a construction zone?
Her (exasperated): No, no, it was flares, silly. FLARES! You know, lahk daisies.
Lillies. FLARES.

So there you have it: yet another reason to love North Carolina. All the spring flares.

Saturday, August 30, 2008

For Nick...

Crinolins: The Great Divide

In the late 50s, crinolins had waned from their apex as a fashion accessory. For those unfamiliar, a crinolin was a stiff, scratchy petticoat that made your skirt or dress stand out like a ballerina's tutu.

Thankfully, crinolins and I passed, almost like ships in the night. They were on their way out just as I was on my way in. As you can see from the photo at left, I was probably all of a year old. But I could still stand, by gum, so I wore a dress and crunchy crinolins.

Here I am, still pre-kindergarten, in a dress that was probably hand-smocked by either my mother or grandmother. And I'm sure I'm wearing at least two crinolins. I often wore 3 or 4 or as many as I could find. I loved the way they looked - like a ballerina, but I hated the way they felt (scratchy!) and sounded (noisy!) so I was happy to give them up and switch to plain ol' petticoats.

It was my first experience with Ladies' Undergarments as torture devices... but it sure wasn't my last.

What Do Alaskans Think of Ms. Palin?

She's a woman, she's a mother of 5, she's young, she's smart. There's a lot to recommend Ms. Palin, or at least warrant further interest. Rather than listening to the pundits and talking heads endlessly analyze McCain's choice, how about hearing from the people of Alaska, or even one person from Alaska?

There is no doubt in my mind that many Alaskans are feeling pretty excited about this. But we live in our own little bubble up here, and most of the attention we get is because of The Bridge to Nowhere, polar bears, the indictment of Ted Stevens, and the ongoing investigation and conviction of the string of legislators and oil executives who literally called themselves “The Corrupt Bastards Club”.
I also saw Ms. Palin described thusly:

beauty contest winner
creationist who wants to force teaching it in the schools
fights for Big Oil over polar bears
anti choice
uses elected position for personal vendetta against male relative
filthy rich
five young children being raised by whom? nannies?

I consider myself a feminist. I cannot relate to this woman.

Well, I'll go along with the other six concerns, but I don't think the first issue, "beauty contest winner," is relevant. Doesn't make her any more or less qualified. And frankly, The Beautiful will be the first to tell you that they suffer terrible discrimination and even harassment, and the rest of us just don't understand, or we would be more compassionate. In fact, my pal Joyce often points out -- as we are circling to find a parking place -- "There are those who consider great beauty a handicap..."

Oh, and don't forget that pesky ethics issue that is still dogging Ms Palin. Isn't that just the burr under the saddle of so many republican candidates? By all means, be informed: read about "TrooperGate." Might be nothing, might be something: looks like it's up to the voters to decide.

I don't know if Ms. Palin is a big bag o' BS or not. I'll give her points for at least shaking things up. I do think the choices for VP from both parties has probably never been as important as it is now, and I think we should all look very closely at her record and at Joe Biden's. I wish us all peace, and prudent decision-making.

Epilogue: see "Glued to the Set."
As usual, my friend at PeskyApostrophe has an interesting, reasoned, researched opinion to offer.

Friday, August 29, 2008

Laughing in Cancer's Face

Got Cancer? - the BEST t-shirts!

"Instant Survivor - Just Add Chemo"
or "i-Chemo"
Damn the Tumors - Full Speed Ahead!
or my personal favorite, "I'm making Cancer my Bitch!"

Grapes of Rap?

The 'hood was called to help with the Harvest of the Grapes last night. Videographer and Vintner Gary put out the word, and about ten of us showed up to take turns plucking the Fruits of the Vine. While Nick and Silly Cat plan their strategy, we confirm that the bar is well-stocked -- picking grapes is thirsty work. We had trouble coming up with a harvest song. I suggested "Day-O," but we decided that only applied to banana harvests. Then someone came up with that Quaker song or psalm that goes (something like), "Tis a gift to be simple, Tis a gift to be free..." Gary thought it should be updated to a rap rhythm, so Chris and I provided the "Tchk-ah Tchk-ahs!" and the "Ngh Ngh Nnnnghs!"

We wrapped up just as the sun was setting. Is there enough for two bottles? Three? I don't know, but when it's ready, I'm sure Gary will share it with us all, even if it's by shotglass.

Big C Update

Pre-authorization from DieSuckah Health Insurance has finally come through, and the countdown for the Stem Cell Transplant (SCT) begins! Actually, it begins September 5 with shots, then September 9 with "harvest." I won't actually check in to the hospital until mid-September.

But my little daily window of activity is getting smaller and smaller, just as there is more to do. I'll still be making every effort to blog daily. I've decided not to blog about the SCT itself, for many reasons, so I'm stockpiling what I hope will be funny pictures and stories instead.

Now, I've got to go make the most of that little window. But I'll be back!

Thursday, August 28, 2008

Peppermint Patsy

I’ve never been a binge-eater. Never had crazy cravings for just one food. Until now. I don’t know if it’s the cancer or the chemo (a phrase that I probably repeat often), but I’m definitely in the grip of cravings these days. I’m trying to eat a balanced diet, but it’s tough when your three food groups are Candy, Ice Cream, and Fruit.

For months, it was Gummy Bears. I’m embarrassed to admit that because I am -- or was -- a bona fide Foodie with a profound appreciation for real food, fresh ingredients, exciting combinations. Gummy Bears aren’t even food, they’re corn syrup and petroleum byproducts; more like anti-food. But that’s what I wanted, day in and day out.

It was actually kind of a relief to jump the rails and switch to (or rather, add) Peppermint Ice Cream as the new object of my affection. Aside from some artifical food coloring, it’s mostly real food. Real ice cream, peppermint flavoring, crunchy little bits of peppermint candy...mmm! And because I’m only serving myself from my itty bitty pyrex bowls, I can’t be doing too much damage. But I am a bit concerned about the depth of my passion... we are not “just friends,” Peppermint Ice Cream and I. If Peppy tries to tell you otherwise, let me know.

Strangely, my other love is fresh fruit. Ever since the diagnosis, this is one food that has never lost its appeal (ouch), even through the worst of treatment side effects. Oh, I can eat it in a pie or a tart, but mostly I am content to down bowls of it, naked. (The fruit, not me. Usually.) Or maybe with a tiny drizzle of chocolate sauce (strawberries, pineapple, banana). Or just a little shpritz of whipped cream. (Reddi-whip, not Cool-whip.)

What’s your food obsession? Is there something you could eat three times a day -- at least for a while?

Meet Bro 2

I'm sure Bro 2 is happier "behind the scenes," he's a very modest guy. But I'm sorry I've gotten this far without a post about him, he is my closest sibling; in fact, we probably have the most in common among my siblings. We are both goal-oriented, and very sincere, passionate people. Most people might not expect it when they meet him, but Bro 2 is very good with kids of all ages. (I'm very good with kids up until adolescence; then, I think we should lock them in cages until they're 21.)

He is a talented keyboardist and photographer and just a little bit of a computer wiz. Bro 2 has always preferred to build his own computers (?) instead of buying something off the shelf. In fact, he has most of the family's mechanical aptitude. He is very much a make-anything, fix-anything kinda guy, and a good sport about tackling lengthy to-do lists whenever he visits me or the 'rents.

Bro 2 is an animal lover, but works such long hours, he's been afraid to get a dog. He did break down at one point and got a bird, a parakeet he thought was stupid -- even for a bird -- and named him "Einstein." (Look at the size of his head; what did you expect?) Bro 2 claimed he hated that bird. But... he had many opportunities to find a new home for Einstein, and instead, he kept him for years, shlepping him through several moves. Bro 2 has become a bit crusty and curmudgeonly in his old age... but that's just on the outside. He is the most soft-hearted, generous guy in the world. Just don't tell him I said so, okay?

Moderation in All Things

Wednesday, August 27, 2008

Question Authority... Every Chance You Get

That was a battle cry in the 60s and it's the core of my Medical Manifesto. Especially since I have learned I will often be told to get/do/take something, when the sole objective is to make life easier for medical personnel. I'm not trying to be difficult, but it's also not my job to make their jobs easier. Let me rephrase: I have cancer, ergo it IS all about me! If they can't tell me why something has to be done a certain way... maybe it doesn't have to be done that way.

If you've read "The Road to Diagnosis," you know that I probably should have done a whole lot more squeaking, a lot earlier. What a lesson. Who knows? An earlier diagnosis may not have made a difference in the treatment of my cancer, but if I had been aware of my vulnerabilities, I might have at least avoided the compression fracture, and that would have made a HUGE difference in my quality of life.

The first time I had an infusion (IV) of Zometa, a bone-strengthening drug, the nurse STABBED the IV in the top of my hand; the drug wasn't even ready for more than an HOUR. So I spent close to two hours feeling like I had a harpoon sticking out of my hand. (And as a souvenir, a purply-black bruise for two weeks after.) It hurt so much, I asked why it had to be inserted there. "Well, it's just easier for us...blah, blah, blah." Hmmm. I have had every subsequent IV in the crook of my elbow, and they don't even do that until the drug is ready... and it doesn't hurt AT ALL. Which is good, since I get this every month for two years.

Most recently, I had to sign a consent form for the Stem Cell Transplant (SCT). And I've learned to READ these suckers. Let them sit and wait, I refuse to let them make me feel uncomfortable just because I want to know what I'm signing. And guess what? The fourth item on the consent form was "I understand and agree that Industry Representatives may be in the room to consult during my procedure." Huh? I questioned the RN about this and she immediately said, "Oh, you can just cross that out if you want. You don't have to agree to that." So, I CROSSED IT OUT. And the #$!! "Industry Representatives" can just wait in the #$!! hallway, thank you.

She also said "they" suggest I shave my head before I even check in. Double Huh?? She couldn't even look me in the eye when she dropped that turd in my lap. I know I'm going to lose my hair, sorry if that's going to inconvenience you in any way! Here's my compromise: I will get a very short haircut a few days before I'm admitted. But I'm not shaving my head. Nope. Worst case scenario is I end up with a few stray tufts here and there, like a Dr. Seuss character, or a Muppet who ingested something naughty. Well...I think that would provide some comic relief every time I looked in the mirror.

Let them know: I'm not a sheep, I'm a PERSON. I don't care if it's easier for YOU. I don't care if I make you WAIT. I have a right to be treated as an INDIVIDUAL. BE the squeaky wheel. DEMAND answers - satisfactory answers. QUESTION AUTHORITY.

If nothing else, applying the *PITA Principle will put the health care professionals on notice that you are paying attention to everything they say and do. It's not going to fix the horrible, broken health care system we have in this country, but it should change the way YOU are treated.

*PITA = Pain In The Ass. If you're going to slow everyone down with your perfectly valid, reasonable matter how patient and friendly you are, by default you will be a PITA. Wear it with pride.


¿dónde está el cerebro

Talk about "politically incorrect!"

Tuesday, August 26, 2008

A Rare Sighting

Look, it's a giant, bow-legged Baby Coot with a killer faux-hawk!

As Good A Religion As Any

The Church of the Flying Spaghetti Monster was created in response to a Kansas school board's decision to teach "Intelligent Design" alongside evolution, as if the two were comparable theories. Adherents, called (I kid you not) Pastafarians, are popping up all over the world, demanding equal time whenever a school, municipality, legislature or any public body allows public displays of any one religion, or gives preference to any one religion. (Also see A Scientific Religion, a nice overview with links to related articles in NY Times, Scientific American, Washington Post, and BoingBoing's million dollar reward to anyone who can prove Jesus is not the son of the Flying Spaghetti Monster.)

Rather than a set of strict commandments, the Gospel of His Noodliness offers eight "I'd Really Rather You Didn'ts" to follow. I have to say, if I were going to join a religion, this one suits my philosophy and temperament more than any other. But honestly, with the single, notable exception of my cooking club, Stir Crazy, I'm just not much of a joiner.

I mention this because I respect CFSM, and because there are still people who have not heard of this fast-growing religion. Also, I have been asked if Flying Heart Person (see description at right "About the Masthead") has any affiliation with this Church. I am proud to report that Flying Heart Person is absolutely, completely non-denominational. But s/he has admitted to finding the Flying Spaghetti Monster, "kinda hot." Plus, they have that whole flying thing in common...

The Joys of Cancer

#4 Accepting Help

I'm sort of a volunteer junkie.
For the last 6 or 7 years, I've been a public library volunteer, selecting and delivering books, tapes, and movies for homebound people. I was often at the library once or twice a week, so this was a minimal effort on my part. I love the library, and I loved being able to share it with people who couldn't travel. Doing good to feel good is very addictive. And...maybe just a little selfish. I was often surprised, and a bit embarrassed, at the depth of my patron's gratitude; it seemed out of proportion to the very small favor I was providing.

It's been eye-opening to be on the receiving end.

People want to help.
People want to help. They want to help so much, sometimes they don't even wait to be asked. And occasionally, the help offered is not exactly what I need, or when I need it. Doesn't matter - it's my responsibility to accept as graciously as possible, especially in those situations.

Ever since my diagnosis, I have been overwhelmed with generosity, with acts of kindness. It just about turns me into a blubbering idjut when I think about it. I never would have imagined that accepting help is more difficult than asking for it...and more rewarding.

J. D. Salinger -- a notorious recluse and clearly a fellow crank -- said, "I am a kind of paranoiac in reverse. I suspect people of plotting to make me happy." I know just what he meant. I suspect people of plotting to make me happy, too, and comfortable, and content, and ultimately healthy.

They are trying to sabotage my crankiness. And my job is to let them.

More Joys of Cancer
#3 Asking for Help
#2 New Priorities
#1 We Share

Monday, August 25, 2008

In Search of Cinderella

by Shel Silverstein

From dusk to dawn,
From town to town,
Without a single clue,
I seek the tender, slender foot
To fit this crystal shoe.
From dusk to dawn,
I try it on
Each damsel that I meet.
And I still love her so, but oh,
I've started hating feet.

Ah, this poem is an apt metaphor for why I hung up my dating spurs
in my early 40s.
After 20 years on the front lines, I felt I'd earned
my retirement. I had not (and still haven't) completely given up
on the idea of finding a soulmate, I just wasn't willing to devote
any more time to looking for him. So I hope he's out there
looking for me.

Meet the Out-of-Towners

I met JOYCE in Corpus Christi, more than three decades ago. And I'm a pretty high maintenance pal, so this says a lot about her patience and forgiveness. Through my travelin' years we were sometimes out of touch for a year or more, but when we reconnected, it always felt like we could pick up right where we left off. Joyce is a practicing Buddhist (as opposed to people who just like the way it sounds), and although it required some bypass work a few years ago, she has the biggest heart of anyone I know. She also "gets" me, the way very few people ever have, and when I call her, even if I start in tears, I always, always end up laughing.

A few years ago, Joyce found a man smart enough to realize what a treasure she is. I was delighted to attend their wedding, and to be reminded that "it's never too late" to find love and let it in to your life. Joyce has been surrogate mom, big sister and BFF, and I think I'm so fortunate to have hung on to her all these years - more than half my life!

SUSAN was one of the first people I met when I moved here. I was drawn to her, the way everyone is when they meet her. She is smart, caring, so very funny, and doesn't take herself seriously. I think I was struck by her disposition more than anything else: it seemed to me that she got up every day expecting to have fun, to have a great day, and most of the time, she did just that. I don't think I had ever met anyone before who seemed to make a choice to enjoy life. Could I do that? What a revelation! It was even more remarkable to me when I got to know her better and learned that she had some major physical challenges in her childhood.

She married a professional Foodie, and he shlepped her, and then their two sons, all over the country: St. Louis, Houston, Chicago, Alabama, New York, Florida. They ended up divorcing. Susan was done moving, so she stayed in Florida and her sons got to experience putting down roots. We should have lost touch; we were definitely on diverging paths. I don't think we've seen each other in... 12-14 years? more? But I just can't let go; I'm not willing to let her drift away. So we talk occasionally, email frequently, and she is still sunny and funny and remarkable.

I'm sorry my family and my locals, the Hoodies and Foodies, have never had the opportunity to meet them. I know you would love them, too.

Nuclear Dahlias

Or as President Gump would say, "Nuke-yu-ler" Dahlias. Bro 1, Mom and meself are the gardeners in the clan. Mom's roses and dahlias are spectacular... and Bro 1 really puts me to shame. Not just these exquisite dahlias (by his knees, and again, head-high) but also his roses, his lilies, and a very impressive vegetable garden. All from a fairly small suburban lawn outside Chicago - where he has a very short growing season!

Funny thing, though, I was recently reminded that the first time I planted dahlias, I had what can only be explained as "beginner's luck." Either that, or maybe there really was some nuclear waste on this little patch of soil. I just stuck the tubers in the ground and watered them... and they grew and grew and grew. Eventually they were taller than the gutters on my house; easily 14-16 feet!

Sunday, August 24, 2008

Stir Crazy Cookbook Now on Sale

Everybody's favorite Shrimp Ceviche. Three, count 'em, three outstanding chili recipes. Lemon Parmesan Risotto Balls. Cosmic Crab Dip. French Toast Waffles. Vermont Quesadillas. Smokey Tomato Soup - the BEST tomato soup in the universe. Mexican Stuffed Shells. Lemon-Shrimp Pasta. One of the our all-time favorites, Karin's famous picnic sandwich, requested again and again. How can we get so excited about a sandwich? Well... you just have to taste it!

I haven't even mentioned desserts: Lemon Tiramisu, Strawberry Pie, Coconut Sour Cream Cake, Faux Toffee. And -- hang on to your hats -- Grandma O's Bourbon Balls! I'm telling you, that deceptively simple recipe is worth the price alone.

My Foodies' cookbook, a compilation of our favorite recipes from 7 years of cooking together, is now available for just $10! They won't last long, so plan ahead for birthdays, stocking stuffers, etc. Get your copy from me, my Hoodies, my Foodies, or my Clan. Karin gathered and compiled, and a friend donated the printing, so there was no overhead. Proceeds go to my shrinking cash reserves as I await SS Disability. So help keep Miss Molly in kibble while treating yourself to some truly outstanding recipes.

Saturday, August 23, 2008

Welcome, CG Readers

If you've wandered here from The Adventures of Cancer Girl, welcome. It's a lousy thing we have in common, but we are both using humor and blogging to cope and I have to say, it seems to be working. Things are getting a little grim for me right now; I hope you'll take a few minutes and thumb back to earlier posts that were, I believe, a little more light-hearted and entertaining.

And if you're from somewhere else, please check out Cancer Girl's blog. She's a wonderful writer and lets' face it, life with a 3-year old is bound to be hilarious. (I'm just bummed she nabbed such a good blog name first. I can just hear the trumpet fanfare...)

Stem Cell Transplant 101

What is a Stem Cell?
An Adult Stem Cell has two specific skills: it can divide and create cells like itself (other stem cells), and cells unlike itself (red blood cells, white blood cells, and platelets). Adult stem cells live in the bone marrow and the bloodstream.

What is a Stem Cell Transplant (SCT)?
Here is a brief outline; more info is available at the links below. SCT is similar to a Bone Marrow Transplant. The biggest difference is that doctors have learned to harvest stem cells from the bloodstream, rather than the bone marrow. Mine will be autologous (my own stem cells) rather than allogenic (siblings' donated stem cells), which will eliminate the whole issue of rejection and graft vs. host disease.

First, I will have a port (similar to an I.V.) surgically implanted, then get injections to coax the stem cells out of the bone marrow and into the bloodstream. The stem cells will be harvested from the blood through apheresis; similar to red cell plasma donation, if you've ever done that at a blood bank. The harvesting is done on an outpatient basis; it takes 1-4 days. (Enough stem cells are harvested for 2-3 transplants, just in case you ever need another one.) The little buggers are frozen, and then you get some time off, anywhere from a few days to a few months.

The transplant itself is an inpatient procedure and begins with high-dose chemotherapy to destroy any remaining cancer cells. It also destroys the blood-producing cells in the bone marrow. And here's where I send you off to read more about that, if you're interested. You can Google, (or Wiki, or Dogpile, etc.) "Stem Cell Transplant" and find lots more information and resources.

Stem Cell Transplant (Mayo Clinic)
What Are Stem Cells? and SCT overview (MMRF)

Ironically, I have been on a bone marrow donor registry for years. Good thing no one ever called!

P.S. Please remember when the Save The Fetus folks start shrieking, that thousands of people -- maybe hundreds of thousands -- are alive today because of Stem Cell Transplants, and the Stem Cells DID NOT COME FROM A FETUS. Stem Cell research is still in its infancy (so to speak) and could save thousands more lives, if we don't let ourselves get sidetracked on this silly red herring. Embryonic stem cells are not the same thing as adult stem cells.

Go See...

The Man Next Door Is Teaching His Dog to Drive
50 Things I've Learned in 50 Years - I'm too lazy and/or don't have time to write my own list just now. This is a good start.
Bicycle Lift in Norway - Bet Christie could have used this in the Rockies...

Friday, August 22, 2008

Too Soon Gone

25 years ago this week, my mother lost her best friend. She also lost her only sibling, and her only sister. They were all the same person: my Aunt Carol, or as we called her all our lives, "Auntie."

My Mom and Dad had fixed up Mom's sister, Carol, with Dad's softball teammate, Bennie, and a great romance was sparked. Bennie and Carol married and bought a house one block away from my parents. And that is how I happened to have a somewhat unusual childhood: although we lived in two households, I really had four parents and six siblings. There is a cousin between each child in my family; every year or two the ladies would trade the maternity wardrobe for the crib, and then trade back.

All the children went to the same school and Sunday School, Mom and Auntie volunteered for the same organizations, Dad and Bennie played softball and bowled in the same league. Of course, we celebrated every single birthday, anniversary, and holiday together.

Auntie attended every piano, accordion and ballet recital, every choir program, school play, confirmation and graduation. (Yes, even the infamous Larkspur recital, I'm sure.) Whatever the event, if even one of us was involved, Auntie was in the front row, cheering us on. She loved us completely, unconditionally. I knew that I could always find help if I needed it, just one block away.

Auntie's life was much, much too short, but what an impact she made in the time she had. I know now what a treasure it is to feel this kind of love from someone, someone who's not a parent, and I want so much for all my nieces to feel it, too.

Auntie used to hold my face with both hands, tilt her head slightly, and just beam at me, radiating warmth and affection. I have started doing this with Supergirls 3 and 4, because now, "I get it." Or as SG3 summarized, "I guess it's an Auntie Thing."

Unforgettable Spectacular Movie Night!!!

The Hoodies are having another "Unforgettable Spectacular Movie Night!!!" tonight. Hoodie Gary has hosted a few of these; he's our professional Audio-Visual guy who also happens to be a tv writer/producer. The first one I attended was projected on their porch; the feature movie was Ma & Pa Kettle Go to Paris. (Did I mention the Hoodies are a bunch of Francophiles? or at least Europhiles?) The second one, I didn't even manage to stay for the movie. I think I was some sci-fi thing that got a general thumbs-down. The actual movie being shown tonight? It's a secret.

Doesn't really matter; I probably won't be able to stay long enough for the movie tonight, either. But I'll don my rhinestones for the occasion, and enjoy great food and beverages, and charming, witty repartee. Molly has spent the afternoon at the home of Gracie and her humans, who are hosting the movie, probably getting in the caterers' way, and asking for autographs. She gets away with it because she's sooo cute.

And, for the third time since my diagnosis, I am giving cancer the night off. This is the last time I'll be able to do so, and I'm looking forward to it. I'll strap it back on as soon as I get home, but I'll enjoy being cancer-free for the evening.


Lucky me: three hospital visits in one week. Today it was just for my regular monthly infusion of Zometa, a bone-strengthening drug. After an hour in the waiting room, I finally get called back for my infusion (I.V.). It is a couple of big rooms ringed with large recliners, a variety of I.V. stands, and little swing-over-your-head televisions that hang down.

Ahh, cable! I usually enjoy 1/2 hour to 45 minutes of the food network, or the history channel, or one of the other stations I don't get anymore.
But I'm next to a chatty lady today so a bit reluctantly, I turn off the tv. She is an older lady, very chic with extravagant fake eyelashes. She's wearing a complicated headscarf and a hat. She has heard the nurses asking about my transplant and she wants to know more. (Two of the nurses have recently transferred from the BMT department and kindly stop by to see how I'm doing and if I have any questions.)

I really don't want to talk about it, but that seems a violation of the cancerhood guidelines, so we chat for awhile. "Wow," she says, "When I come here, I'm reminded of that saying, 'I felt sorry for myself because I had no shoes, until I met a man who had no feet.' I always find people who are so much worse off." I don't know whether to be flattered or... well, I decide to be flattered, because I know what she means. We chat some more and part with a friendly hand-squeeze, instant chemo-buddies.

(*That Goddess It's Just Zometa)

Thursday, August 21, 2008

What to Say, What Not to Say

I came across a great article in the waiting room, which I've found online, The Diagnosis Dilemma: To Tell or Not To Tell. It was the sidebars that I appreciated, but they don't have direct links.

Click on "My Uncle Died of That," on the left hand side of the page. You'll get a pop-up window with a very brief article about one woman's experiences. And just below it, "How to React to the News" gives some good guidelines on what (and what NOT) to say when you learn someone has cancer. It is hard to know what to say when you hear this shocking news; here's a chance to think about it and prepare yourself.

I can tell you that my most troubling conversations were when I was told that I have said or done something to cause my cancer (heard that twice, thank you), or that it is some kind of current or past life karmic payback. I don't believe that, and if you do, keep it to yourself. (And honestly, even if you do believe that, why would you think it's helpful to say that to me?)

The second most troubling reaction is being told that I can cure my cancer by willpower; and in fact, that it can only be cured that way. Again, if you believe this, keep it to yourself.

I'm sure that a positive attitude is helpful in every stage of treatment, if only to spare your medical team and caregivers. And please believe me, I'm trying! But it's just not always possible, so please don't imply that my life depends on a sunny demeanor. I have two friends who are addicted to this philosophy, and flog me with it at every opportunity. I've found it extremely hurtful; I know you mean well, but seriously, put a lid on it.

My Life As Pie

I saw a version of this (wish I'd noted it to give credit)
and thought I would modify it to illustrate my own life:

I Get The Gory Details (You Don't)

After the delightful class yesterday (see below), I went back to the hospital today for another marathon. First, there was another piss-and-a-poke. It was a 7-tuber.

Then I had a meeting with a nurse, the purpose of which was to sign the consent form for the transplant. But first, working through a seven page outline, we went through the most thorough, day-by-day overview, complete with most likely scenarios and worst possible scenarios. (More on that -- or why I won't be sharing more on that -- later. Let me just say that everything I have been through so far has been a cakewalk, a joyride, a tropical vacation, compared to what's ahead. ) I didn't check the time before I went in, but I think this meeting was about 1.5 hours.

Then I met with my Transplant Coordinator, who is frustrated that we still can't commit to dates for a couple of reasons. He is very professional, but also kind and patient and understanding. Really -- I manage NOT to cry, because I want him to be proud of me. That's how much I like this guy. We talk about hypothetical schedules, but I know my window is closing fast.

Then I head downstairs for an EKG. It only takes 5 minutes, but is administered by one of the most unpleasant people I've ever encountered at this facility. I am a very good, cheery, patient patient but it is wasted on this sourpuss. Then I go for a chest x-ray, and the wheels grind to a halt as this outpatient clinic is way busy. It's 2:30 pm (I started at 11:30a) and I'm salivating for the granola bar I stuck in my bag. But it's peanut butter flavored, and there are signs everywhere not to eat peanut or peanut-flavored products in this area. I decide not to kill the radiologist with peanut allergies, and have four tic-tacs for lunch. Finally get the chest x-ray, and cross the finish line. Out the door, hike to the garage, and pay for five hours parking although I was there four hours and three minutes.

I eat the granola bar on the way home, giving myself an extra THREE imaginary gold stars. And don't forget - it's Wacky Wednesday. So I completely understand the sentiment below.

Wednesday, August 20, 2008

Transplant Class

Oh, my, what a special experience this was. There were about 10 transplantees with caregivers. Sis went with me and I'm so glad she did; it would have been completely unbearable alone. First, a transplant liaison/nurse talked about insurance (in America, every discussion of health CARE begins with a discussion of health INSURANCE). He reassured us that all the nurses on the unit are trained in high-dose chemo and transplants. We will all have private rooms. No cell phones allowed in the transplant unit. Bottled water only. Visitors cannot eat or drink in the room. A lot of logistical details, but a reassuring, professional presentation.

Then a pharmacist talked to us. I have NO IDEA what she said because the whole time she was SMACKITTY! SMACK! SMACK!ing a wad of gum. What kind of professional can't remove a wad of chewing gum for a ten minute presentation, especially when she is addressing a group of people with a life-threatening condition? She sounded like a fucking cow. SMACK! SNAP! SMACK! I hope sis took notes.

Now the fun part. Two nurses brought in little plastic tubs with IV ports taped into them. Here is the source of my anxiety (okay, barely-controlled hysteria): the PORT. First, we were supposed to practice changing the cap and flushing it. EXCEPT THE CAP ON MINE WAS STUCK. I repeat, THE CAP WAS STUCK! And no one could get it off, not the nurse, not the guy sitting next to me. So in addition to my garden variety hysteria, I have added the fear that I will get a defective CAP ON MY PORT. Thanks heaps. Then I practiced "flushing" it and somehow I did that wrong, and probably sent a row of bubbles to my heart to end my misery.

Then we were supposed to practice changing the "dressing" on the plastic tub, which represented our chests. And I did every single thing wrong, I kept contaminating everything. "Oops, you're not sterile. You touched the outside of the glove. If you do that at home, throw everything away and start over. " I finally got the dressing on, but it was so sticky and my gloves kept getting caught on it. "Yeah, just give it a hard yank," the nurse said... except in real life, that's my CHEST at the other end of the hard yank, thank you very much.

But wait, it gets even better: at one point the nurse was across the room talking to someone, but was loud enough for me to hear her say very clearly, "Yeah, this is going to HURT and be very SORE the first few days. They're just NOT very CAREFUL when they put them in."

Yes, in plain English, that's what she said and I have a witness. "They're just not very careful when they put them in."

I pretty much went deaf after that, the roar of my own anxiety drowned out everything else. Sis was such a trooper and I don't know what I would have done if she hadn't been there, probably started screaming? or maybe just walked out.

Even though some of them seem to have forgotten it, our cancer is life-threatening, and so is EVERY SINGLE STEP of the transplant process. It may warrant a little discussion with my liaison. (On the other hand, gosh, maybe I don't want to piss them off right before I PUT MY LIFE IN THEIR HANDS.)

But I am NOT AT ALL reassured that I can come home alone and take care of this port for the 3-5 days between harvest and transplant.

I urge everyone, ESPECIALLY SINGLE PEOPLE: do not get cancer.

P.S. I do know that my fears are not rational and that I have blown out of proportion the problems I had in the class. Still...

Tuesday, August 19, 2008

The New Addition

I was 7-1/2 when my sister was born, and every bit as thrilled as I look (far right) in this picture. Bros 1 and 2, and Cousins 2 and 3 look a bit more pleased, or at least interested. As you might guess, I was perfectly content being the only girl, and having a bedroom to myself. I saw no need to change the status quo.

In an effort to distract three very young children while their mother was in the hospital, my Dad, or maybe one of my grandparents, had given us a new fishbowl and a large goldfish.

When my teacher (I think I was in Second Grade) got the word that we had a baby girl, she asked me if I would like to tell the class about the new addition to our family. "Sure." I replied. I walked to the front of the class, delighted to be the center of attention and share the big news.

"We got a goldfish!"

Birdylicious II

Remember the groovy posters I bought from Well, I found sort-of-matching pillowcases at Target the other day. So now I have to get the posters into frames, and up on the wall.

And Hoodie Josh came by with a new birdfeeder and birdseed (Advanced Formula Nut 'n Berry) for us to try. Molly and I call the picture window "Dog TV," and we're delighted to have a new channel.

And I've been collecting goofy bird pins pretty much all my life. So I have a whole birdy-theme happening, on my walls and lapels and lawn. We really are birdylicious!

Monday, August 18, 2008

Hey, Hey, We're The Dorkies!

Here are 75% of the Dorkies - I don't know why Bro 2 isn't in the pic. Bro 1 & Sis are definitely at their dorkiest; it was all uphill from here. I'm not sure this was my low point; my dorky phase lasted a long time. But this was my only other attempt at a very short haircut -- and this was before the nosebob -- so I felt as though my nose always arrived a week before the rest of me.

We are posed in front of The Largest Station Wagon Ever Made. I had to use this behemoth to pass my driver's test and yes, parallel parked it. It is a skill I think I inherited from Mom: the ability to defy the physical laws of the universe and parallel park it in a space half its size.

The 70s were a very hairy time. Bro 2 had a thick, curly Jewfro that was the envy of many. For both Bro's, their luxuriant locks are a nostalgic memory.

The Trouble With Poetry

That's the title of one of Billy Collins's (see below) poetry collections. He was the Poet Laureate of the U.S. in 2005. He also began Poetry 180, a website created to encourage high school students to read a poem a day. Not a bad idea for the rest of us, too. Go there, type in #133 or #70 or anything else. Have a nice juicy poem for breakfast.

Here is my favorite poem by Billy Collins, handy for whenever you feel you might be taking yourself, or poetry, or anything, too seriously:

Introduction to Poetry

I ask them to take a poem
and hold it up to the light
like a color slide

or press an ear against its hive.

I say drop a mouse into a poem
and watch him probe his way out,

or walk inside the poem's room
and feel the walls for a light switch.

I want them to waterski
across the surface of a poem
waving at the author's name on the shore.

But all they want to do
is tie the poem to a chair with rope
and torture a confession out of it.

They begin beating it with a hose
to find out what it really means.

-- Billy Collins

Sunday, August 17, 2008

The Joys of Cancer

#3 Asking for Help

I’ve been on my own for a long time. And I guess I’ve arranged my life and my home in such a way that I very rarely had to ask for help. Oh, there will always be the occasional situation that requires assistance -- especially when you’re a scant 5’ tall -- but asking for help was never something that came easily to me. I found it easier to clean my own gutters than to ask someone to do it for me, although with my tiny wingspan, it was a whole lot more upping and downing than cleaning. I was the kind of person who would exhaust all options first, including exhausting myself.

Now, having endured the excruciating, literally bone-crunching pain, of a compression fracture, it is something I am most eager to avoid repeating. I need a lot of help now, and that’s only going to increase, at least through my transplant and recovery. Previously simple tasks like moving my sewing machine or mixer are all out of the question. Even changing the bedsheets is at the outer limit of my strength and mobility range.

Asking for help is humbling; that’s always a good lesson for me. And it’s a stark reminder that I’m a member of a very interconnected species. My peeps have evolved into couples, families, neighborhoods, communities. We have created networks for education, religion, business, for every kind of interaction.

I am not a lone wolf. I can ask for help. I am a thread in the social fabric, a patch in the communal crazy quilt.

Saturday, August 16, 2008

Worst. Movies. Ever.

I've seen quite a few stinkers and snorers since joining Netflix last December, but none come close to my all time worst:

1. Love Story (1970)
Okay, if you've only known Ryan O'Neal as the giant, lumpy Ted Kennedy lookalike he's become, you may be surprised to learn that he was once a bona fide hottie. But he started his career by stepping in this steaming pile of sentimental crap. He plays Harvard undergrad Oliver, a spoiled rich kid, who is smitten with Jenny (Ali McGraw) because she talks fast and has crooked front teeth. Seriously, she's the most unlovable character ever; a wide masochistic streak is the only explanation.

Oliver defies his rich daddy in order to marry Jenny, because they love having snowball fights. OF COURSE, SHE'S GOING TO DIE! (Mercifully, most of us have fallen asleep by then.) She admonishes her beloved, whom she calls "Preppie," (awwww) to be a merry widower, and croaks with all the delicacy and finesse of Carol Burnett. This cheesy, soap-opera-esque tearjerker finally ends, and Ollie quotes dear Jennifer's weird and decidedly untrue philosophy that "love means never having to say you're sorry." He walks away across Havahd Yahd, wishing he could bonk her with just one more snowball.

CUE THE ENDOCRINOLOGISTS! We need insulin, stat!

And yet, it is almost fine art compared to...

2. Flashdance (1983)

A welder-by-day, exotic-dancer-by-night, Alex (Jennifer Beals) wants to join a prestigious ballet company. (Ironically, we would later learn that Ms. Beals did virtually none of the dancing; in fact, the dance sequences are badly edited and hideously choppy because there were actually four professional dancers used.) Luckily, doe-eyed Alex is unencumbered by parents, siblings, children, or much of a plot. She is supposedly a devout Catholic, but this is never reconciled either with her part-time stripping gig or her pre-/extra-marital hijinx. Her best friend-slash-mentor is a little old lady whose relationship to Alex is never explained.

In this seemingly endless music video interrupted with occasional dramatic scenes, Alex seduces her welding boss, Nick (Michael Nouri), who may or may not still be married, but who never had a chance. Why? Because Alex's clothes cannot stay on. First she doffs her coat at dinner to show Nick that she is barely wearing a bib over her little ta-tas. And later, back at her home-slash-studio that is big enough for hobby welding and dancing, she takes her little bra off while wearing a fetching off-the-shoulder sweatshirt and sets it delicately aside, the way a teenage girl might do with her retainer. And that's the real audience for Flashdance: it is female adolescent wish-fulfillment at is squirmiest.

What Flashdance had going for it was a monster score: "What a Feeling" by Irene Cara, and the now-iconic "Maniac" by Michael Sembello pushed this teen girl-fantasy pap over the outfield fence to become a date classic and despite all odds, a hit. It was just a painfully bad movie, yet again, a barrell of monkeys compared to my choice for All Time Worst Movie:

3. The Hours (2002)

Slow doesn't even begin to describe the pacing. Glaciers have crossed continents faster. I vaguely remember that three stories were told concurrently. Three women of different ages, and from different time periods, all affected by the novel "Mrs. Dalloway," and all struggling with depression, suicidal thoughts, repressed sexuality. Yes, it's a rollicking 10-12 hours of cinematic joy.

In one vignette, Laura (Julianne Moore) is a miserable 50s housewife; I think she's a lesbian, but it's the 50s, and that's not allowed (I could be wrong: maybe she wants to be a circus acrobat, or a stripper-slash-welder), so she just bakes one cake after another. Clarissa (Meryl Streep) seems unable to get past her crush on her best friend and former lover, a troubled poet who is also gay and in the end stages of AIDS. Whee! But the center, the star of this cinematic carbuncle, is Nicole Kidman as Virginia Woolf. We are supposed to understand that she is coming to some revelations about her life and her relationship with her husband. But... it's just a whole lot of brooding, quiet scenes with Nicole looking pensive, probably unhappy about her gigantic prosthetic nose. What Nicole and Julianne share is the ability to cry -- on cue, and seemingly endlessley -- without blinking. There is a WHOLE lot of crying-without-blinking in this movie.

One reviewer claimed, "Nicole Kidman gives a beautifully controlled, heartbreaking performance as the troubled Ms. Woolf, conveying a veritable cauldron of seething inner emotions through a strangely unchanging, passive and emotionless exterior." Really? I missed that completely. No cauldron. My friend Angie described it as, "The Hours of My Life I'll Never Get Back."

I admit that I like movies that make me feel good. I like happy endings. I like it when characters triumph over adversity. I like linear plots, developed characters, well-paced action. What a throwback, eh?

Well, that's my top 3 Worst Movies Ever. I'm assuming a) mainstream and b) national distribution. Did I miss your favorite Worst?

Go See.....

USA Map - place the states!
Lego Artist - Yes, they really are Legos.
More Cool Posters - Travel posters for Rocketship Tours.
Spills are not a problem on this dining table.

Friday, August 15, 2008

Drowning in Paper

Boy, cancer requires a lot of paperwork! And so does poverty. I have a big box right here in the living room that is full of file folders. It's the Cancer Box, and it includes...

Medical bills.
Medical test results. Every month I have an elaborate version of "a poke and a piss," and get 3-5 pages of results.
Insurance statements. I gave up trying to pair these with the medical bills, and just created a separate file.
Insurance correspondence. Everything but statements.
Food Stamps. Boatloads of paper for twice-annual "re-certification." It requires any combination of utility bills, bank statements, mortgage statements, medical bills, vehicle registration, tax returns, birth certificate, etc.
SS Disability. Everything Food Stamps requires, and much more. I've received my "automatic" denial; 8 months later, I'm in the process of my first appeal.
Financial Aid. With a very high deductible (yeah, hindsight, eh?) and no income, whatever assistance I get makes a big difference. I owe thousands of dollars to three hospitals, and they all require tankerloads, aircraft carrier loads of documentation.
Leukemia Society. Big hugs to Foodie Lynn for telling me Multiple Myeloma is one of their cancers. I have also applied for financial assistance from two different funds they administer.
Drug Company Brochures from the company that makes my chemo drug.
Attorney. The first thing I did after getting my diagnosis -- and I mean the next day -- was get my Ducks in a Row.
Misc. General info about MM, treatment overviews, caregivers guides, etc.
Extra copies. I try and save myself time by having extra copies on hand of tax returns, utility bills, drivers' license, birth certificate. Doesn't matter; whatever someone requires is always the one thing I don't have in the file.

A couple of months ago, a friend came over for a visit, bringing her little dog along. With barely a glance at Molly, he marched right over and peed on the Cancer Box. My thoughts, exactly.

Thursday, August 14, 2008

The Great Mystery of 1963

I took piano lessons when I was a child. In a creepy old building, up a very tall, dark staircase, in a dank, tiny studio, with the scariest little piano teacher this side of Stephen King.

I think "Miss Feelbad" was just over 4' tall (and yet, and she was still taller than I was). She was older than dirt and wore garish clown make-up: pink dots on her cheeks, great big red lips, and giant Joan Crawford eyebrows that arched UP to her hairline and back, giving her a perpetually shocked! expression. Her scariest feature, though, were the giant raised blue veins on the backs of her hands. I thought she had worms under her skin.

Have I set the stage for my unhappy musical experience?

Miss Feelbad, who really should never have been allowed near children, had a policy that you couldn't move on to a new piece of music until she felt you had mastered your current piece to her satisfaction. And that is why I played a piece of music called "Larkspur," for over a year.
Week in, week out, month after month. The whole family could sing the lyrics: "Little, little Larkspur! Little, little Larkspur!" It got to the point where my mother stopped badgering me to practice.

Looking back, it is a testament to the civility of my parents' generation, that they didn't tear Miss Feelbad's gnome-like little body limb from limb and throw her out the window of that musty little studio.

When I finally, finally moved on to another piece of music, my mother baked a cake to celebrate the occasion. It said "Hooray, Nancy. No More Larkspur!"

Not too long after the Larkspur Incident, Miss Feelbad and I had a set-to. She was always harping on me to arch your hands! arch your hands! but my hands were so
tiny that I couldn't reach the chords unless I flattened them. She told me that next time, she would line up razor blades along the edges of the keys, so if I didn't arch my hands! I would just cut them off.

And that was my last piano lesson. Mom finally agreed to let me off the hook.

I knew that somewhere, in the massive but somewhat disorganized (!) family archives, there was a picture of me, with that cake. So I went digging one day last year, and finally, finally came up with this.

"Good Girl Nancy - No More Largo!"

Largo? Largo???

And so, here is the mystery:
Either the whole family "misremembers" the name of the song I tormented us with for all those months...
is it possible that there were two songs I played so badly for so long that each warranted a celebration when I finally moved on?

Epilogue: Bro #1 also started lessons with Miss Feelbad, but almost immediately changed to a more qualified piano teacher, as his skill and talent warranted. He studied piano for years and is a wonderful pianist, composer, conductor, and music director. He, his wife, and both daughters are all accomplished musicians and performers. Bro #2 chose a different instrument (the accordion) and so had a different teacher, but also studied for years. His talents translated onto other keyboard instruments as well. My sister, I believe, escaped music lessons completely (you're welcome!). But Miss Feelbad was the beginning, middle and END of my affair with music.

And I have no explanation for that strange expression on my face here, except that even then, I hated having my picture taken.

PET Scan - Check!

The PET scan is done. Not bad at all: it took less than an hour, and it wasn't bang-bang-bang loud like the MRI. Other than that glow only special radioactive girls get, I'm fine. Now it's just a waiting game.

Since last night was completely sleepless, and today is cah-razzzy Thursday, it's back to bed for this glowing girl. I'll keep you posted.

Fleurs du Jour

Black-eyed Susans dressed up in a ginger jar vase.

Zinnias look just as pretty in a juice glass.

The little bit of everything bouquet.

Wednesday, August 13, 2008

A Poem

Nichita Stãnescu

Tell me, if I caught you one day
and kissed the sole of your foot,
wouldn't you limp a little then,
afraid to crush my kiss?...

stumbled upon at Romanian Voice

(Tell me this won't haunt you like a lacey cobweb in the back of your mind.
Tell me you don't love poetry.)

Quiet Heroes

I usually watch one of the news shows with my morning coffee. When I’m not in the mood for news, I switch over to one of the god stations, which airs reruns of “Little House on the Prairie” at that hour. I loved reading the books when I was growing up, and I liked the series when it ran. It's schmaltzy, but whatever the crisis, Pa, or sometimes Ma, or both of them, will figure it out and everyone will be okay by the end of the show.

I didn’t have a father who was around as much as Pa Ingalls. My Dad and his father were both pharmacists, and owned a small drugstore together. Grandpa Harry was a bit of a rascal; with some regularity he’d leave the store to Dad and Grandma Flo, and take off to watch a ball game or whatever else he wanted. (There are even some rumors that, in the early years, Grandma filled a prescription or two, not knowing when Harry would return.)

The upshot was that Dad worked a lot of hours, often 10-12 hours a day or more, and weekends whenever the “relief” pharmacist wasn’t available. I was lucky that my Uncle Bennie had the time, and the willingness, to teach me to swim, ride a bike, ice skate, etc. But at the time, I was a little resentful. I didn’t understand why my Dad couldn’t be around more.

I had no idea how hard my father worked, how thinly his hours were stretched. He was working all those hours at the drug store, not just as the pharmacist on duty, but also as the store manager. He was taking care of a household and a house and a yard. He squeezed in, when he could, being on a bowling team and a softball team. Every vacation was spent either at his in-laws, or with them. Until I was a teenager, I don’t think my parents ever took a vacation without their four children. And for the last couple decades of their lives, he was also taking care of his aging parents. Dad was an only child, so there were no siblings to step in and share the responsibilities.

Still, I don’t ever remember my father complaining about any of it. Ever. Whatever needed doing, he just did, and went on to the next thing. I know there were financial struggles through some lean years. I’m sure there were great emotional hurdles in caring for his parents as their physical and mental health declined. But you would never know it from my father.

So, my Dad wasn’t around as much as I would have liked. He wasn’t a physical presence often, but he was a towering emotional presence. I knew that he would literally work himself to death, if needed, providing for us, for his parents, for anyone who needed him.

Sometimes heroes don’t run into burning buildings and rescue people. Sometimes heroes just set aside their own needs and wants, and do whatever needs to be done, day after day. They don't often get noticed and almost never get thanked, but the world would grind to a halt without them.

And that makes for a whole lotta emotional security. Just as much as those Ingalls girls had, I’m sure.