Sunday, May 30, 2010

In a jam

Yesterday, my crazy husband was off running 21 miles, training for a marathon he's running in a few weeks. This meant that WCK and I had the morning all to ourselves, so I decided to take her on a mother-daughter date to Jiggle Jam. Jiggle Jam is a huge children's music festival held every Memorial Day weekend at Crown Center in Kansas City. It was founded by local celebrity Mr. Stinky Feet. We'd never been to Jiggle Jam before, and I'm not sure why, because It. Was. Awesome. Mr. Stinky Feet, is there anything you can't do?

There were a bunch of those inflatable bouncy things, and a rock-star tent where the kids could play little instruments, dress up in rock-star clothes, and get photos taken inside a photo booth. We took off our shoes and dangled our toes in one of the Crown Center fountains, sat under a tree and ate Minsky's pizza and a dish of chocolate Italian Ice. We stopped by one of the vendor booths and bought a pair of green fairy wings. We made crafts and played with bubbles. We saw several different shows, including a Funky Mama concert (she's the female equivalent of Mr. Stinky Feet), a really cool puppet show, and a really great show put on by Martin City Melodrama. The theme of the show was fairy tales from all around the world where the princess/female character is the hero of the story and saves the day herself instead of waiting for Prince Charming. We both really enjoyed it.

There was only one dark moment on our otherwise great day: The kiddie train.

Jiggle Jam featured a tiny train for the kids to ride that made a very slow, very tiny, approximately 30-second loop right in front of Crown Center. WCK saw a photo of the train on the Jiggle Jam web site and proclaimed that she had to ride the train. We saw the train in person, and she proclaimed that she had to ride the train. I purchased a $2 ticket for said train, we waited in line for the train, we got ready to board the train, and then ....

WCK proclaimed the train was "scary."

Never mind that WCK has ridden trains like this a million times in the past. Never mind that just last weekend at a birthday party, WCK rode a fully grown, real-live horse all by herself. Never mind that WCK is now a preschool graduate and everyone else who had calmly boarded the train without assistance was approximately 2 years old. This tiny little train was suddenly the Most Terrifying Thing in the World.

After two different attempts to board the train, I was becoming irritable, mostly because I'd paid $2 for a 30-second train ride, which, if you think about it, is like charging $240 an hour to ride this dang train. I said that if WCK was going to be too tired and cranky to board the train, then we were leaving and going home right that second, even though that meant that WCK would not be allowed to change into her swimsuit and play on the Crown Center spraygrounds. The chance to play on the spraygrounds had been WCK's lifelong dream, ever since she first heard about it, approximately two hours earlier that day. (Mother-of-the-Year-Award Committee, please contact me to get my home address for the mailing of my plaque.)

Finally, the train conductor suggested that I walk/jog alongside the train and hold WCK's hand. WCK agreed to these terms. So, there I was, doing the Jiggle Jam Walk of Shame alongside the miniature train, wondering how I'd explain to paramedics about a little train running over my feet, enduring the quiet stares of judgement from the two-year-olds who rode without hand-holding assistance. Fortunately, my walk/jog only lasted 30 seconds. Then WCK announced she wanted to go again. Um. No.

But we were able to put the train ugliness behind us, and WCK changed into her swimsuit and played in the fountain, which, I have to say, looked like the most fun thing in the whole entire world. By the end, we were both too worn out to stay for the big Stinky Feet concert at the end of the day. As we headed toward the car, I asked WCK about her favorite part of Jiggle Jam.

"The train!" she said.


Friday, May 28, 2010


I just read a post on one of my favorite blogs, Confessions of a Mother, Lawyer, and Crazy Woman. She wrote about being in an exercise class and the instructor asking if anyone had any health problems (ML&CW has a brain tumor). I was going to leave a comment for her about my own experience, but it got really long, so I decided to turn it into a blog post instead.

I joined a gym about a year and a half ago. (By the way, I am still really good about going to my strength-training classes two or three times a week. See a previous post about lifting weights with some very strong older ladies.) When the front desk lady was filling out all of my gym-joining paperwork, she said, "You're healthy, right? You're not on any meds?" I paused, wondering how I was going to phrase everything. I feel like one can't just blurt out, "I have cancer," without following up with a lengthy explanation of how one is not going to collapse and die at the gym right that second. It needed to sound very breezy and casual, something like, "Um, yeah, well, OK, see, I have this rare form of blood cancer? Like, a kind that only 70-year-old men get? But I've never had any symptoms, and my form of it is really slow-moving, so I'm only on medication some of the time, and they're just pills, not, you know, 'make-you-go-bald' chemo or anything, and right now I'm on a super low dose, with the idea that I'll probably be completely off the drugs in six months. And, no, I'm not in remission, but that is TOTALLY OK." I knew I'd have to add that last part in, because some people get really freaked out when you say you're not in remission.

Just as I was getting ready to launch into my casual, breezy, I'm-not-going-to-die explanation, I noticed that the front-desk lady had already written "H E A L T H Y" in giant letters across the bottom of the form. Well, gee. How sad would it be to watch her scribble out "H E A L T H Y" and replace it with, "Rare form of 70-year-old-man cancer, but claims she is not going to die, despite the fact that she's not even in remission."

"Yeah," I said, "I'm healthy."

Tuesday, May 25, 2010

Cancer Girl on location

An exciting development here at Cancer Girl Headquarters: The International Myeloma Foundation contacted me about a week or so ago. They are going to be flying Jay and me to Chicago in a couple weeks and putting us up in the Hard Rock Hotel so that I can attend the American Society of Clinical Oncology annual meeting and blog about it.

I say, it's about dang time this fatal disease started paying off for me. A free hotel room! Aren't you all so jeaaaalous? Don't yoooooou want a fatal disease? Well, tough. It's my fatal disease, and you can't have it!

Seriously, though, I am a little bit nervous about reporting on this meeting. I'm hoping that the good people at the IMF have thoroughly reviewed my blog and understand that it consists of 99 percent NKOTB tributes and photos of Bon Jovi with his shirt off, and approximately 1 percent actual scientific fact. The titles of the presentations contain words like "carfilzomib" and "panobinostat" and "intravenous bortezomib", just to name a few. I'm assuming these are actual words, although they could easily be words that oncologists invented to make their meetings sound important. "If we say it's a meeting about, oh, say, 'carfilzomib', no one will ever guess that we're really sitting in the conference room drinking margaritas! Ha ha!"

Don't worry, clinical oncologists. I promise I will never reveal your secrets. I will write things like, "The talk about carfilzomib was very scientific and serious, and I learned tons of facts, and I swear there were no margaritas involved." You will want me at your meeting every year.

Sunday, May 23, 2010


Early this morning -- very, very, very, very early this morning -- WCK was in the bathroom down the hall, and I heard her yelling for me in all-capital letters. "MOMMY! MOMMY! I NEEEEEEEED YOU!!!! MOMMMM-MAAAAY!!" (Repeat about 11 times) I thought maybe she'd fallen in or something, so I managed to crawl out of bed and stagger down the hall with my eyes closed. Until I've consumed a Diet Coke, nearly every task is performed in a staggering, closed-eye manner.

I arrived at the bathroom to discover she was perfectly fine, but she faced a moral dilemma and needed some advice.

"I need to flush, but I don't want the noise to wake up Daddy!"


Friday, May 21, 2010

Lick the Ewok

Jay's birthday is just a few days after WCK's birthday, so we've had two celebrations around here. Jay did not get to have his party at a bounce-up-and-down place, unfortunately, but his little party was still pretty fun. About a month or so ago, WCK was looking through an Oriental Trading Company catalog and found the perfect gift for Daddy. It was a grilling apron that you color yourself. I agreed to order it, along with some fabric markers. WCK faithfully worked on the apron nearly every day. Most days, she insisted on shutting herself away inside a top-secret location (the laundry room), just in case Jay happened to come home from work in the middle of the day. Yesterday, we finally revealed the apron. Jay was very happy with it. I think Jay is going to wear it all the time, like even to important business meetings and church:

Then WCK decided that Jay needed a party with a Star Wars theme. We bought Star Wars plates and napkins, and then we baked a cake and decorated it with Star Wars figures. It was originally going to be just an Ewok cake, but then, as we tend to do with cakes around here, we ended up getting a little nuts. Don't worry: All of the figures took nice, long baths in hot, soapy water before they were placed on the cake:

If you'll look closely, you'll notice that three of the Ewoks are about waist-deep in cake, the poor fellas. As I pulled off all of the figures, I turned to Jay and said a sentence I've never said before: "Would you like to lick the Ewok?"
For the record, he did not want to lick the Ewok. Party pooper.

Being five rocks!

Wow, so much has happened in my fast-paced, whirlwind life since I last blogged. Laughter, tears, human drama. For starters, the super handsome guy got voted off American Idol. WHAT? Is this one of the signs of the apocalypse? I have not been following AI as closely as I have in the past -- we have one of those old-fashioned TiVos from, like, the 1880s or something that can only tape one show at once, and Lost is on at the same time as AI this season -- but I figured the super handsome guy would at least make the top two. Dreadlock Girl has been destined to win since day one.

Also, I got to the point in my Little House DVD collection where Mary goes blind. This feels like a huge milestone in my life. "PA!!! I CAN'T SEE!!!" So brilliant.

Let's see. I think that's about it. Oh, and when I looked away from the TV for a few seconds, I noticed that my only child had turned five.

FIVE!! That's right! FIVE!! When I started this blog, she was about nine months old. Five seems very old to me, maybe because I can clearly remember being five myself. We had another birthday-party extravaganza with 15 kids at one of those bounce-up-and-down places. I love the bounce-up-and-down place, and they always do such an excellent job with birthday parties. I think WCK should have her birthday party there until she turns 18. Can you have a high-school graduation open house at a bounce-up-and-down place? That would be sweet. The theme this year was, of course, Hannah Montana. WCK had a giant purple Hannah Montana cake and balloons, and she wore a t-shirt that said, "Being Five Rocks!" All of the kids got sunglasses.

The downside of turning five, though, is that you need to get shots. Lots and lots of shots. We did that yesterday. I think WCK handled the shots better than I did. She brought along her myeloma buddy, Hug-Hug, for moral support, and afterwards, I took her to McDonald's for a chocolate milkshake. WCK agreed to share the shake with me, and we drank it with two straws, like teenagers on a date in an old movie. It almost made the shot trauma worthwhile.

On the day after her birthday, I asked her if she liked being five. "Oh, it doesn't really feel any different," she said. "You know, like the day after I turned one? I still felt like I didn't have an age."

Friday, May 07, 2010

My old nemesis!

As I just told you in my last post, my M-spike is now 3.2. This is exactly what it was back when I was very first diagnosed in 2005. Now I feel like I'm back in familiar territory. I've dealt with good old 3.2 before. I suddenly got this old Far Side cartoon stuck in my head: "So, 3.2! My old nemesis! We meet again! But this time, the advantage is mine! Ha! Ha! Ha!"

Keep your shirt on!

M-spike = 3.2

OK, so this isn't GREAT, but last month it was 3.1, and all of my other numbers are fine, so I would consider that stable from last month. (Plateau? Maybe?) My next blood test will be in about six weeks at Mayo.

But this month was not a big increase, so I guess Bon Jovi can stay at his current level of shirtlessness:

Brought to you by

Monday, May 03, 2010

My buddies, my buddies, Part II


In case you missed the last post about the Myeloma Buddies, I will calm down long enough to recap: Fellow myeloma patient Feresaknit makes these adorable little dolls and sells them at her Etsy shop. All of the profits go toward myeloma research. When I saw them on another blog, I just had to order four of them: One for WCK, and one each for my two nieces and Future Nephew. (Pretend to be surprised, parents of two nieces and Future Nephew). You can order any color(s) you like, but I asked to be surprised. Today they arrived, all the way from the U.K., and they turned out to be just perfect. In fact, one of them has pink and yellow stripes -- my two favorite colors. That's the one WCK picked out as her own, and she named him/her "Hug-Hug". Here is Hug-Hug and his/her posse:

But that's not all. Also included in the package was a note that there was a special gift Buddy, just for me. I couldn't believe it. It was so sweet, I nearly cried. Yes ...

It's a Dorothy Buddy:

Is that the greatest thing in the world, or what?

Here's the entire gang. I just love 'em. I've said it before: Only Super Cool people get myeloma: