Vindication (Go, Margaret!)

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

Happy Hump Day

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

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

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

------------------------------------------------------------

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

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

Afraid So

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

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

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

Go See...

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

Crafters share ideas and sources at Tip Junkie.

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

Helen Back

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

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

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

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

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

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

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

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

Day 28

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

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

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

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

Urp To My Lou

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

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

I rike!

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

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

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

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

Why, In MY Day...

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

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

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

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

Heavy Sweater

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

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

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

Three good things:

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

--------------------------------------------------------------------------------

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

Anti-Social Networking

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

Anti-Social Networking!

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

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

• When was the last time you went outside?
• Do us all a favor: Unplug for 24 hours.
• Hang up. You can do it!
  
• Was that really worth 30 seconds of my life?
• I don't care. No one cares.

You can see where we're going, can't you? Yes, the messages will slow down to a trickle, and eventually they will stop. And that's okay, that's actually a good thing. (If you're not sure, we can connect you with a three-dimensional support group.) Eventually, people will begin actually talking to one another. Imagine going in to a coffee shop and seeing people converse with each other! It's going to take some adjustment, but I think it's in the best interest of the species to foster and encourage personal contact.

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

Some news

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

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

Money for Nuthin'

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

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

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

The Tyranny of Cheerfulness

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

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

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

In her new book, Bright-Sided: How Relentless Promotion of Positive Thinking Has Undermined America, Barbara Ehrenreich calls positive thinking a "mass delusion." She argues that an unrelenting drive to train our brains to overlook problems and blame ourselves for failures has blinded us to inequality, incompetence, and stupidity.

Can I get an Amen, Sister? AMEN! I'm sure a positive attitude is helpful, especially to caregivers, family members, and medical personnel, and for their sakes alone, I try to feel optimistic. I keep hoping for the best. But if we could cure our cancers with positive thoughts, WE WOULD! Do you dim bulbs honestly believe that we want to suffer? Excruciating pain, bankrupting expenses, devastated family members...yeah, baby, bring it!

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

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

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

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

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

Still No News :)

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

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