Sunday, June 29, 2008

The Adventures of Poodle Girl

We went to my 15-year high school reunion this weekend. Only a small percentage of our class attended, but it was a nice, laid-back event. We had a good dinner and lots of '80s songs. I think a lot of work went into planning it. Personalized M&Ms were involved. I saw several people I haven't seen or heard from in years and a few people I still see or talk to from time to time but should probably see more often.

The organizers had set up a photo display, and we were all invited to send in photos from our school days. I never got around to sending any, but somebody else sent in a wallet-sized print of my seventh grade school photo, and there it was, hanging on the wall. Perhaps I should be touched that this person still had a photo of me after nearly 20 years, but really, for the good of humanity, all copies of this photo should have been burned -- and the ashes buried in an undisclosed location -- in 1987.

This is not a good photo.

You know how there are photos where you, personally, imagine you look bad, but really you look just fine? And other people try to reassure you? Sometimes, even if you still look semi-bad, other people still try to tell a little white lie to reassure you? Nobody could even lie well enough to reassure me. My friend Diane, who I have known since I was about 13, spotted the photo and screamed, "HOLY SH*T!"

This is not a good photo.

The bad part was not my red-and-black-striped '80s sweater. It was not my chipmunk cheeks. I had a fairly decent facial expression, and I'd just gotten my braces off, so things could have been much, much worse, I suppose. What makes this photo so outstanding in the world of Bad School Photos is my hairdo. My awful, awful hairdo.

But Karen, you're thinking, EVERYONE had an awful hairdo in 1987. This is true. But my hairdo was awful EVEN BY 1987 STANDARDS. In the 1980s, perms raged across the land, and nearly every female looked like she was wearing a poodle on her head; however, most females knew how to style a perm the way it was supposed to be styled. These gals looked like they were at least wearing a nice-looking poodle. A frisky, healthy, glossy, well-cared-for poodle. My poodle? This was clearly a down-on-his-luck, hard-drinking, depressed poodle. This was a poodle who had given up on life, overdosed on cocaine, wandered into a pounding rainstorm, died in the gutter, and somehow managed to end up on my head.

I had no idea how to style a perm. And the sad thing is, I'm sure I worked REALLY HARD to achieve this hairdo on Picture Day and was probably pretty proud of how it turned out. I was 12. I was oblivious. Twelve-year-olds should not be entrusted with perms. There should be a waiting period. You should have to pass a test on hair styling before you are allowed to get a perm on your own head.

In the '80s, nobody knew that a perm is a privilege, not a right.

I worry about how this photo may have affected some of the other attendees. I'm pretty sure a few of them went blind instantly; others will probably suffer from Post Traumatic Stress Syndrome. I feel like I need to right this wrong, but probably the only way it can be done is Quantum Leap style. Here's my to-do list for the week:

1. Pay bills.
2. Take WCK to music class.
3. Invent a method of time travel, visit my 12-year-old self, and convince her to stay away from this perm. Perhaps convince her to stay away from cameras altogether until about 1992.
4. Clean out the car.

Looks like I'm swamped.

Friday, June 27, 2008

Stable

I finally got my test results back from last week. My M-spike is hanging in there at 1.7. At least it didn't go up. My total protein is down to 7.2. I'm pretty sure that's the lowest it's ever been. Woo! Now that I know the 6 mg of dex can keep me stable, I'll take Dr. GPO's advice and try the 4 mg.

That's one teeny little dex pill. Just one. I'm sure it'll still make me nuts, though.

Kathy from NJ left a comment that my Revlimid pills are filled with time-release granules. Oh. I was kind of hoping they'd contain, I don't know, teeny magic leprechauns or diamonds or pink puffs of smoke or something.

Great and Powerful Oz

Diane posted a comment asking what "GPO" stands for, as in Dr. GPO. Shortly after I started this blog, I was trying to get in to see him, and it was difficult to get an appointment. I said it was like trying to get in to see the Great and Powerful Oz. I called him "Dr. Great and Powerful Oz" for a few posts, and the nickname just stuck.

I should really stop calling him that, but it's become a habit.

Anyway, enjoy this collection of Wizard of Oz bloopers. I'm ashamed to say that even I didn't know about some of them. The video doesn't show much of my favorite: Judy Garland using Toto to hide a fit of the giggles. You can see it really well in the actual movie.

Thursday, June 26, 2008

Ooooh, pretty.

Today the delivery guy brought me my first bottle of 15 mg Revlimid pills. The 25 mg pills were plain white capsules. The 15 mg pills, though, are a jazzy combo of teal and white. This is fabulous. I say, if you have to take cancer medication, it might as well be pretty.

Here, a crowd of curious onlookers stops to admire my attractive new pills:



Every month, before the pharmacy can ship me my pills, I have to talk to a pharmacist who goes over the long list of Revlimid Rules with me. I am not to donate to a blood bank, I am not to share my medication with anyone (Who would do this? And why?), and I am not to open or crush the capsules. Of course, after hearing this month after month, I am always incredibly tempted to open the capsules. If the pharmacists hadn't given me this instruction, I wouldn't even think about it, but they have planted the seed in my mind. Some nights I think I can barely stand it if I don't open the capsule and look inside. I swallow it quickly before I can give in to the urge. What is in there? What? Since the pills cost about $400 each, I dare not open one. But I will always wonder.

Wednesday, June 25, 2008

Maniac on the floor

I know I've been acting like the upcoming NKOTB show will be the concert of the year, but that was until this morning. Mr. Stinky Feet played the North Kansas City Community Center. I'm not sure any other musical event can ever top it.

WCK and I are obsessed -- ABSOLUTELY OBSESSED, PEOPLE -- with Mr. Stinky Feet. We were the first people to arrive at the show, and we got a great spot right up front. At first WCK wasn't sure what to think. She couldn't really believe that the famed Mr. Stinky Feet was actually five feet away from her, and she sat quietly in my lap. Somewhere toward the end of the concert, though, she decided to charge the stage.

OK, there wasn't really a stage, because the concert was held on the floor of a gymnasium. If there had been a stage, though, she would have been dancing right on it. Mr. Stinky Feet did a really good job of not tripping over her, bless him.

I wasn't quite sure what to do about it. I'm always trying to encourage her to be more outgoing, and there she was, dancing onstage with Mr. Stinky Feet in front of about a hundred people. Maybe I should have employed more discipline and told her to sit back down, but instead I got out the camera and got some video. She was just like Courteney Cox in the "Dancin' the Dark" video.

By the way, I tried to post a video of Mr. Stinky Feet, and YouTube wouldn't let me, dang it. You'll have to head over to YouTube and watch it on your own if you are interested.

Monday, June 23, 2008

Why WCK is WCK

When I first started my blog, I was a little nervous about putting information about my child on the Internet. At the same time, I didn't want to have to password-protect my blog, because I wanted other myeloma patients to be able to find me. I've been able to connect with a lot of people this way.

My solution was to call my child"World's Cutest Baby" or WCB. When she was two, I upgraded her to "World's Cutest Kid" or WCK. I've never posted her real name or her photo. Sometimes I wonder if I'm being too paranoid. I have lots of friends who post photos of their kids on their blogs, and everything is fine. Plus, I'm sure I've provided enough information about us that someone who was truly psycho could hunt us down if he/she really wanted to.

Am I being paranoid? Should I just use her name and post her photo? After all, she does have a beautiful name and she IS the World's Cutest Kid, after all.

Then, the other day, I was looking at my report from Google Analytics. This is a free service that tells you all kinds of things about visitors to your blog: How many people visited you, how long they stayed, where they live, things like that. You can look at all of the search terms people used to find you on Google. They range from heartbreaking ("dying of multiple myeloma") to hilarious and bizarre ("is it bad if your rabbit has a bloody nose?"). Most of them are completely harmless, but there were also a few creepy ones in there, too. Apparently, my post about WCK's obsession with public restrooms caused my blog to pop up on Google when someone searched for "video of men going pee in the restroom." Icky. Someone else searched for "video of girls having dex." Usually this kind of typo would make me laugh, but this person viewed two pages of my blog.

Eeeeew. Creepy. I don't want this person looking at pictures of my kid.

So WCK she is. WCK she shall stay.

Saturday, June 21, 2008

I'm too dexy

I went to the Cancer Center yesterday. My blood counts were pretty good. Dr. GPO was happy that Dr. H was so happy. He signed the order to get me my new lower dose of Rev (15 mg! Woo!) and told me I could come down to 4 mg of dex. THAT IS ONE PILL. When I started all this, I was taking TEN dex pills at once. I was excited, but then I started obsessing over it when I got home. (Me? Obsess over my treatment? I know. It's shocking.) The plan was to come off the dex gradually, and I've only been on 6 mg for two weeks (well, this weekend makes it three weeks). I haven't even seen any test results that show if the 6 mg is doing its job. I decided to keep myself on 6 mg until I get my results back and see that everything is all right, even though I'll most likely be in total misery tomorrow. I'm glad I have lots of episodes of Dr. Phil in the TiVo.

Yeah, the dex crashes have finally started to catch up with me. Last week during the crash, all I could do by Monday afternoon was lie there and watch Dr. Phil during WCK's nap. I even watched the one where he counseled Danny Bonaduce and his soon-to-be-ex-wife. It was painfully, painfully, painfully annoying, but I was too weak to find a different episode. It made me realize, though, that there are much worse things than dex, such as having to be married to Danny Bonaduce.

Friday, June 20, 2008

Hot dogs, tiny hot dogs

We had a busy week this week. We went to an event with our moms' group every single morning, although, technically, Monday shouldn't really count. We were supposed to go on a tour of the local fire station, but WCK and I had to leave after about five minutes. Apparently, WCK finds firefighters very scary. I found out later that it ended up being the most FUN EVENT EVER. The kids even got to play with the hose and climb all over the truck. Sigh. We can now add firefighters to the list:

WCK'S List of Scary Things:

1) Vacuum cleaners
2) Fudge-making demonstrations
3) Firefighters

What if I'm someday vacuuming while making fudge and the house catches on fire? WCK will not call for help. I'm doomed.

Anyway, today we went to an early Fourth of July party. The kids made tambourines and danced to patriotic songs. I made these hot dog cupcakes:



The hot dog is a caramel square, warmed in the microwave and then shaped into a hot dog shape. The bun is a circus peanut cut in half, and the ketchup is frosting. I wanted to add mustard, but the yellow frosting I bought ended up being a clear yellowish gel and did not look like mustard. I made them last night, and the circus peanuts absorbed moisture from the frosting and got all mushy. If you're going to attempt these yourself, I'd say don't add the hot dogs to the frosting until the last minute.

My friend Brooke ended up making teeny tiny cookie hamburgers for the party. We didn't even consult each other beforehand. It's probably a sign that we're spending too much time together if we can telepathically coordinate teeny tiny food.

I'm off to the Cancer Center pretty soon. Then a weekend of dex. Arrrrrrrrrrrrgh.

Sunday, June 15, 2008

Happy Father's Birthday

A few days ago, I overheard WCK telling her grandma, "Easter is over, but it is almost Father's Birthday, and then it will be July Time." Happy Father's Birthday to all you dads!

We have a really fun water park near our house. They have a cool program on weekday mornings called "Splash 'n Play" where they only admit kids under five (well, and their parents, of course) for just $5 per kid. A water park visit is much more stress-free when you don't have to worry about an enormous eight-year-old accidentally jumping on your three-year-old. Last summer, we didn't find out about this until halfway through the summer, so this year I vowed we would go all the time. It was supposed to start on June 2. On June 4, WCK and I got up bright and early, got into our swimsuits, spread on the sunblock, and headed for the water park. We got there to discover ... the water park was closed. They'd decided to wait one more week before opening and hadn't announced it. I had to explain it to WCK, and it was the saddest thing ever. We managed to salvage the morning by running through the sprinkler in the back yard, but it just wasn't the same.

This morning, we thought all three of us would go to the water park as part of our Father's Day celebration. The newspaper said we'd have a nice morning and storms in the afternoon. Clouds began gathering as we were leaving the house around 11 a.m. Did we let that stop us? No! Our family is brave. We are hardy. We are wildly optimistic. We are, clearly, fools. About 20 minutes after we stepped into the (freezing) water under black, scary clouds, the lifeguards made us all get out and go home because of lightning.

WCK was devastated AGAIN. When she woke up from her nap, she wanted to go back to the water park (which was supposed to re-open after the storm), but it was only 65 degrees outside, so we had to say no. I explained that we'd do something even better: We'd take Daddy out to dinner! We'd give him his presents and the card she made for him! She still cried bitter tears. I imagine her talking to a psychiatrist about this in 30 years: "My parents kept getting me excited about the water park when I was three, but then we always had to leave." It reminds me of that old Deep Thought by Jack Handey:

"One thing kids like is to be tricked. For instance, I was going to take my little nephew to Disneyland, but instead I drove him to an old burned-out warehouse. 'Oh, no,' I said. 'Disneyland burned down.' He cried and cried, but I think that deep down, he thought it was a pretty good joke. I started to drive over to the real Disneyland, but it was getting pretty late."

Saturday, June 14, 2008

Preschool in a Box

This past week, Grandma Kathy came to stay with us. She comes for a week every summer, and we always look forward to Grandma Kathy Week. She is a kindergarten teacher and always has fun ideas for things to do. This year, she brought something she called "Preschool in a Box". It was a big cardboard box filled with an endless supply of crafts, books, bubbles, music, snacks, and more. You never knew what amazing thing was going to come out of Preschool in a Box next.

While WCK and Grandma Kathy played endlessly with the Preschool in a Box, I was able to go shopping by myself, get a massage, see Sex and the City with my friends, eat a sandwich peacefully at Jimmy John's, nearly finish an entire book club book, and go on a real date with my husband (Bo Ling's, Barnes and Noble, and Indiana Jones). Thank you, Preschool in a Box! Come back soon!

Wednesday, June 11, 2008

Let the countdown begin

Today is June 11, which means there are exactly FIVE MONTHS until the NKOTB concert in Kansas City. I shall begin my solemn vigil by posting this video from "Hangin' Tough Live", a VHS tape I watched about 10,000 times in my friend's basement in 1989.

Enjoy Donnie's ripped jeans.

Tuesday, June 10, 2008

Three percent

The American Society of Clinical Oncology recently released some good stats. If you are a newly diagnosed myeloma patient taking Revlimid and low-dose dex, your chances of surviving the next two years are 93 percent. (There aren't any stats beyond two years yet, because Revlimid is so new). If you're a totally healthy person who doesn't have myeloma, your chances of surviving the next two years are 96 percent.

This means you only have to worry about me three percent more than you'd worry about a regular person.

Monday, June 09, 2008

Sunday, funny Sunday

If you count the two years that Jay and I lived in Overland Park when we were first married, we have lived in the Kansas City area for about seven years. I'm ashamed to say that, in all that time, we've never been to the City Market. We finally went yesterday morning, and I have to say that the City Market is the FUNNEST. PLACE. EVER.

Grandpa Mike was in town with his little blue Fiero, which he entered in the "Fiero Fun Fest" at the City Market. Jay, WCK, and I went down there to try to embarrass him in front of his cool new car friends, but I should know by now that Grandpa Mike doesn't get embarrassed. When I was a child, he used to pick me up from Wednesday night church class wearing a plastic shark nose. Sometimes also a wig. Anyway, he took first place in his division, although he pointed out that there were only two cars in his division. Still, that's something.

In addition to standing around looking at cars, WCK and I got to ride on a cool little train. This is kind of an odd photo, but you get the idea:



There was also a very fun man with some puppets:





WCK and I also jumped around inside a bouncy castle. I think those things have an official name (Moonwalks? Aren't they called Moonwalks?), but I spent a large chunk of my time in college playing "Theme Park" on a friend's computer, so I will always call them bouncy castles. It was a really good workout. Jay said we should just get rid of our treadmill and get a bouncy castle.

On our way out, Jay found a copy of Buck O'Neil's autobiography at a flea-market table for 50 cents. I'm pretty sure it is illegal to reside in Kansas City and not own a copy of Buck O'Neil's autobiography, so now we have that one covered, too.

Enjoy the City Market: Check.
Enjoy Buck O'Neil: Check.
Enjoy eating barbecue: Check. Check. Check!

Whew. We can keep on living in Kansas City.

Sunday, June 08, 2008

A Day Out With Thomas

Yesterday we went on a Thomas outing -- a completely different kind of Thomas outing than the one that I described in my last post.

We drove to Baldwin City, Kansas, a town located Somewhere at the End of the Earth, where they had a real train with a life-sized Thomas "engine" attached to the front. Check it out:



We got to take a 25-minute ride on the big train, and a guy dressed like a conductor even walked by and punched our tickets. WCK couldn't get enough of waving out the window. She had a good time, but before we even got to the train ride, we rode on a shuttle bus -- A REAL SCHOOL BUS, PEOPLE -- from the parking lot to the railroad depot. I think this might have been even more exciting than the train ride. WCK could not stop smiling through the whole bus ride. In the future, maybe we need to find more events that use school-bus shuttle buses, and we'll simply ride back and forth to the event area for free, instead of actually paying for a train ride.

After the ride, we wandered through a big tent containing every Thomas-themed product you could ever want. WCK picked out a Mylar balloon that's as big as she is. We made the mistake of purchasing the balloon before lunch, and then trying to eat hot dogs in the wind with a three-foot balloon. While Jay and I were wrestling with Balloon-Zilla, we heard a cry from WCK: She'd plucked a jalapeno off of Jay's nachos and discovered that it was not, in fact, a pickle. I've never seen her drain the sippy cup so fast.

The best part of the day was that WCK received a certificate announcing that she is now a "Junior Engineer". This is a HIGHLY OFFICIAL certificate, signed by Sir Topham Hatt himself. I know Topham Hatt has a very rigorous screening process. I imagine he only takes the best of the best, like in Top Gun. I think we should carry this with us at all times. I mean, what if we're on a train someday and the engineer keels over? A panicked cry will go out: "Does anyone here know how to drive a train?"

"Yes!" I'll exclaim, waving the certificate in the air. "My three-year-old daughter is a Junior Engineer!"

The passengers will heave a collective sigh. WCK will save the day.

Friday, June 06, 2008

I knew she wasn't a Republican

This morning, WCK was playing alone in her room with some Thomas the Tank Engine toys. I could hear her talking to herself.

"THOMAS AND PERCY ARE GETTING MARRIED!" she exclaimed.

Heh. I've been wondering when those two crazy kids would settle down together.

Thursday, June 05, 2008

Political analyst

WCK and I had a political discussion yesterday morning.

"WCK," I said, "can you say 'Obama'?"

WCK was more interested in her trike than in Obama.

"Um," she said, "maybe later."

This is her typical, trying-to-be-polite response when a request annoys or displeases her. I started laughing.

"I don't think Grandma Marty would want to hear you say that," I said. Grandma Marty is a big Obama supporter. Actually, I don't think "supporter" is a strong enough word for what Grandma Marty is.

"I said," WCK repeated patiently, "I say 'Obama' LATER."

I felt a small pang of fear.

"You're not a Republican, are you?" I asked.

"I don't think so," WCK said soberly. "That's silly."

Indeed.

Wednesday, June 04, 2008

Nibbles

While we were driving to the grocery store yesterday, WCK announced, "I want to nibble the sky!" She told me the clouds would taste like vanilla. Mmm ... clouds.

As long as we're on the topic of nibbling, I thought I'd post a photo of the previously mentioned rainbow pancakes that my sister made. See how decadent?



You'll notice that I put a few pieces of fruit on the plate in an attempt to make myself look like a Decent Mother. Then I could say, "Well, yes, I allowed my child to eat a breakfast of pancakes, whipped cream, candy sprinkles, and sausage, but the breakfast also included healthy fruit. See how healthy?" Of course, she did not touch the fruit.

While we were at my sister's, we also made Batman brownies:




I know all of this food is very wrong. I have witnesses who will testify that I only had a teeny, teeny sliver of Batman brownies because I was on dex. At least the sky is low in calories and sugar, as far as I know.

Tuesday, June 03, 2008

Good news, good news

We got back from Rochester really late last night. Everyone is completely exhausted, but there was lots of good news over the past few days.

Good News #1: While Jay, WCK, and I were hitting the road for Iowa/Rochester on Saturday morning, my friend Abigail was back in Kansas City, hard at work on Ticketmaster.com getting the two of us tickets to ... THE NEW KIDS ON THE BLOCK! Woo hoo! She says our seats are up high, but really close to the stage, so I could throw my shirt at them if I wanted to. I'll think it over, but I still have the shirt I bought at a NKOTB concert nearly 20 years ago, and I plan on wearing it. If I tried to throw it anywhere, it would probably disintegrate in mid-air. The thing is an antique. Anyway. The concert is not until Nov. 11. What am I going to do with myself until then? I'll have to find a time-consuming project, like cross-stitching a giant banner that says, "I (heart) Donnie!" That's sure to get his attention.

Good News #2: Pepper was really surprised by her party, which was wisely held outdoors in case she got too surprised. WCK and her cousin (World's Cutest Niece), who will turn three in September, had their first slumber party together. They did sleep. Briefly. WCK is the more talkative one of the pair, so we did have to endure several hours of listening to WCK: "That's my bed, WCN! THAT'S MINE! Stop it! Stop it! STOP IT!!" Before you think WCK is the poor victim here, we finally went upstairs to find WCN lying in her own bed, and WCK vigorously jumping up and down in it. They finally fell asleep, only have WCK wake up at 5:30 a.m. and announce, "IT'S MORNING!!" to everyone in the house. At least we all got to try Aunt Jenny's Famous Rainbow Pancakes (secret ingredients: whipped cream and rainbow sprinkles), which sort of eased the pain of the slumber party.

Good News #3: Dr. H says she is very happy with the way my treatment is going. My M-spike results weren't back when I met with her yesterday, but my IgG protein (another way to track the myeloma) is down to around 1,500. This is nearly NORMAL. At its all-time high, my IgG was well over 5,000; it was around 3,700 when I was first diagnosed. It was around 2,300 at the time of my stem-cell harvest six months ago. The IgG tends to correspond with the M-spike. Dr. H wasn't too concerned about what I will forever call "The 2.1 Incident" and agreed with our theory that it could have been a fluke test. (Once again, I'm SO GLAD I didn't freak out about it.) She agrees that we can keep trying to get me off of the dex, but it might be better to try quitting it gradually this time. She reduced my dose from 8 mg to 6 mg per week. We'll see how that goes for a while. She also said I can reduce my Revlimid dose from 25 mg to 15 mg. The Rev has been making my white cells drop a little bit, so the dose reduction should help. I won't be able to do that until the next cycle, though, because I have a bottle of 25 mg pills all ready to go right now.

The best news of all, though: If this tapering-off-the-drugs thing works out, Dr. H seemed really, really, really optimistic about the possibility of me COMPLETELY QUITTING ALL DRUGS, maybe even within the next six months. If I did that, I'd just go back to having blood tests every two to three months, like I did before when I was smoldering. Drs. H and GPO would keep an eye on me and start me back on the Revlimid if things got out of hand. She told me she had another patient who is doing this and has been drug-free for 18 months. That's so exciting that I'm trying to keep myself from thinking about it too much. First I need to taper off the dex and see how that goes. If that works, then we'll taper off the Revlimid. Woooooooo!

Good News #4: On our way home from Rochester, we stopped at a Subway and were told it was "Free Cookie Night." I think the three best words in the English language are probably "Free Cookie Night."