Wednesday, September 26, 2007

A dirty kid and a change in plans

Even though WCK has all of the typical issues that come with being two years old, she is typically pretty tidy and well-behaved. Today, however, we went to a park for an ice-cream social with the MOMS Club. The park featured an enormous sand box, and in the center of the box was a deep pit filled with damp, muddy sand. Of course, all of the kids were drawn immediately to the pit. I spent about an hour and a half successfully keeping WCK away from The Pit of Temptation, even though that meant I had to physically drag her away and let her sit and pout for a while. I stopped paying attention for a few minutes while Abigail showed me how to fix my Earthworm Blanket (yes, I now carry knitting around with me), and when I looked up, WCK was cheerfully sitting in the center of the pit with her friend Aidan. They were happily exchanging globs of sand, pouring it all over each other's clothing and hair, and chattering away in two-year-old language. I figured I could drag her out again, or I could run and get the camera. I ran to get the camera. WCK has never been so dirty in her life, although they were playing quietly and sharing.

In other news: I got a call from Mayo today. It seems that whoever scheduled my harvest didn't get the memo that Dr. H would be out of town the week of November 5, so the harvest had to be pushed back one week. I now start my tests on November 12. We might not make it home in time for Thanksgiving now, but I'm sure we can cook a little turkey in the apartment. It'll be fine.

Tuesday, September 25, 2007

Take cover!

It's been brought to my attention that Tropical Storm Karen is a brewin' in the Atlantic.


Monday, September 24, 2007

Martian Death Flu

WCK has finally recovered from an ugly bout of Martian Death Flu. Dave Barry coined this term; I use to to describe any cruddy illness that doesn't really have a specific diagnosis. WCK's symptoms were cough, fever, runny nose, and a serious vow to Never Eat or Sleep Again. She was well enough to go to the park this morning, and today she finally agreed to eat a good lunch and nap all afternoon. Hallelujah! She still has the runny nose from time to time. How do you teach someone to blow her nose? WCK won't wipe her own nose, and yet she can't tolerate the runniness. All day long I hear, "Nose running, please!" and I have to be at the ready with a Kleenex. At least she says please.

We didn't do much all weekend besides grapple with the Martian Death Flu, and of course I was under the curse of the Evil Dex Pills. Only one more week of drugs for me! Woo hoo!

In other news, I discovered a great brownie recipe and made it for a picnic Jay went to for a church group. Get a box of Betty Crocker Chocolate Chunk Brownie mix and mix it up as directed. Pour half of it into the pan, and then top it with a half a cup of cut-up chocolate mint patties. Pour the rest of the brownie mix on top and bake. The mints all melt away, but leave a minty flavor. Mmmm, good.

I know, I know: Baking? Knitting? Church picnics? Feverish children? What is this? Little House on the Prairie?

Friday, September 21, 2007

Knit wit

I'm learning how to knit, and it turns out that knitting is REALLY HARD. My friend Abigail is an extreeeeeeeemely patient knitting teacher, which is good, because I am the Forrest Gump of the knitting world. It took me two hours to make this:

Jay was extremely supportive and said that it could be a blanket for an earthworm. If any of you come across a chilly earthworm, let me know, and I'll send the blanket right out.

Wednesday, September 19, 2007

Baby Einstein

As you know, I've been waging a war with WCK's wild hair. Actually, it's not so much waging a war as watching helplessly as the hair mocks me. I am not allowed to touch the hair. WCK's bangs had gotten so long that they'd sprouted wings. She was sporting a look that was sort of Einstein meets Farrah:

Yesterday, she actually agreed to a haircut. She sat patiently in the chair (which was shaped like a little Jeep with a picture of Cinderella on it), allowed the stylist to put a cape on her, wet down her hair, brush it, cut it, put styling product in it, and DRY IT WITH A BLOW DRIER. Obviously, this woman has magical powers, and I need to hire her to come live at our house full-time. If I even glance sideways at a hairbrush across the room, WCK screams like I'm trying to murder her. Forget trying to put a bow in her hair. Just forget it.

Although her hair was back to the Einstein phase this morning, at least it was a little bit shorter and neater. Still, I've always been so envious of all of these little girls with their neat and tidy hair in pony tails and barrettes. Then the October issue of Parents magazine arrived right on time.

I'm not sure why I subscribe to Parents, since it is pretty much a 300-page manual of all of the calamities that can befall your child: Lyme Disease, rabies, choking on an improperly sliced hot dog, scary allergies. In the Parents world, everything -- EVERYTHING -- will hurt your child. The villain this month? Barrettes!

Yes. It turns out that barrettes are a choking hazard, headbands are a strangulation hazard, and ponytail holders will give your child headaches. Woo hoo! I'm a good mother after all! Let your hair run wild, WCK. Let your hair run wild.

Tuesday, September 18, 2007

Milkshake drama

I've gotten really behind on my blogging. Where to begin? Here's a quick review of the past few days.

On Thursday, WCK and I went to the Weston Red Barn Farm with the MOMS Club. Here's a photo. WCK is the tiny blue dot. The tiny orange dot is her friend Aidan:

We had a great time looking at animals, touching a baby chick, having a picnic under a tree (after thoroughly washing the baby chick off of our hands, of course), and even going on a hayride. WCK completely freaked out on a hayride when she was five months old, so I still get really nervous about them. She seems to love hayrides now, though.

Saturday morning we went to another Mr. Stinky Feet concert. You have to love Mr. Stinky Feet. He's going to be performing with the Kansas City Symphony (no, I'm not making that up) in November, but we'll be in Rochester. Stupid disease!

On Saturday night, Jay and I found some quality entertainment: An educational DVD that we received in the mail from the Mayo Clinic called "Autologous Blood and Marrow Transplant at Mayo Clinic." It was actually really informative, and even a little scary, because they were very upfront about telling you how crappy you're going to feel after a transplant. They were also quick to offer a lot of disclaimers: "Yes, a transplant could cure you ... but it could also fail, and then you die." Nice.

The video featured interviews with people who have had transplants as well as an actor (who was, of course, about 80 years old) portraying a transplant patient. The actor demonstrated all of the different steps in the process, including the period where transplant patients feel so awful they can't eat anything. The actor dramatically shook his head while his wife silently pleaded with him to drink a milkshake. Jay and I thought it would have added a little realism -- and maybe some extra dramatic flair -- if he would have just tossed the milkshake back in her face. Maybe I should get a job as a Mayo Clinic video director.

Anyway. Now we're all informed, and I spent the rest of the weekend strung out on dex. Imagine me saying this in a Jerry Seinfeld voice: "I hate the dex!" For some reason, I feel no difference between the 20 mg and the 40 mg. THANK GOD I only have two more weeks of this stuff, at least for a while. Evil, evil dex.

Wednesday, September 12, 2007

Comedy team

WCK and I have been working on a comedy act. Here's the script:

ME: Knock, knock
WCK: Who's there?
ME: Boo!
WCK: Boo who?
ME: Don't cry!

We've been having a lot of trouble in rehearsal, however. This morning, here's how the act was going:

ME: Knock, knock
WCK: Who dare?
ME: Boo!

I tried giving her a little creative advice, telling her that she's supposed to say "Boo who?" after I say "Boo." Now the act goes like this:

ME: Knock, knock

Obviously, the act is going to need some fine-tuning before we take it on the road.

And in hair news: Those of you who have seen WCK lately know that she has some serious hair issues. Part of it is that she is in desperate need of a trim. She's also genetically doomed with out-of-control curls. However, the fact that she won't let me come near her with a hair brush -- or anything resembling a barrette -- is just making matters worse. Today she saw me coming with the brush, ran away screaming, "Nononononono!" and proceeded to put on her bike helmet so I couldn't get to her head. She's an evil genius.

Tuesday, September 11, 2007

Cheese sauce, inflatable slides, November

I've been feeling a whole lot better since that last post. Things are looking up.

We had a really fun weekend. We traveled to Ames, Iowa to see my sister, Jenny, my brother-in-law, T.J., and World's Cutest Niece. WCN is only four months younger than WCK, and those two little girls just love each other. They play very nicely together and would even walk around holding hands. Jay, T.J., and three of Jay's friends from Minnesota spent Saturday tailgating, attending an Iowa State football game, and participating in all-night, post-game revelry. I'm not sure what went on; I'm not sure I want to know. The most I heard is that one of the group entered a convenience store in the wee hours of the morning and tried to order doughnut holes with cheese sauce.

Again, I don't want to know.

Anyway, this meant that Jenny and I got to spend a lot of "girl time" with our little ladies. We visited a real farm, took a long walk, and went out to eat at a pizza place. Maybe that doesn't sound like a lot of activity, but with two two-year-olds in tow, it was a very full day. We all enjoyed it. After the girls went to bed, Jenny and I watched Rudy. Heh.

Today, WCK and I went to a crazy place called AirZone. I've never seen anything like it. It's two enormous rooms filled with giant inflatable slides, obstacle courses, and what can best be described as "bouncy thingies." It looked like a place WCK would run screaming away from, but she loved it. There was one giant slide that we had to climb at least half a dozen times, and she eagerly completed all of the obstacle courses -- with Mommy right behind her providing a boost up all of the climbing walls. After about an hour or so, we were both completely exhausted and sweaty. I think EVERYONE needs to go to AirZone for their daily workout. If there were an AirZone on every street corner, there would be no childhood obesity -- or mommyhood obesity, for that matter. At the very least, you can use AirZone to justify junk food. "I can have a brownie: I went to AirZone today." I love you, AirZone!

Today I also got everything (pretty much) squared away for the Mayo trip. I report for my first day of testing on the morning of Monday, November 5. The tentative schedule is to have a bunch of medical tests on Nov. 5, 6, and 7 and to also meet with Dr. H on Nov. 7. If everything goes OK, I'd start injections to mobilize the cells on Nov. 8 and hopefully begin stem-cell collection on the 12th. The woman I spoke with said I could be done as soon as Nov. 16 or maybe just a few days later. It's sounding like we'd be up there for two weeks at the most, instead of three weeks, and it also sounds like we'd be back before Thanksgiving. I also got good news from my insurance caseworker: We have full coverage for everything, including all of our travel and lodging expenses (WOO HOO!!). I know that we're really lucky. I booked us a furnished apartment really close to the clinic. It's also really close to a Barnes and Noble. Do you think insurance will reimburse us for Barnes and Noble expenses? I could argue that B&N is therapeutic.

Thursday, September 06, 2007

Tomorrow is another day

Results are in, and my official M-spike at the end of cycle five is ... 2.0. It went down a lousy .1 during the whole cycle. I keep reminding myself that Dr. H said plateaus are okay, but I still wish it had been lower. It's disappointing to suffer through four weeks of steroids and then not see the spike move. My INR, on the other hand, jumped to 2.5 (It's supposed to be between 1.5 and 2.0). I guess the 5 mg of Coumadin was a bit much. I have been eating a ton of salads, I swear. I even got a salad when we went to Donald's over the weekend. Anyway, I'm back on my old Coumadin dose again.

There was a big drama with the Revlimid this afternoon, when the nurse called to tell me that somebody at the Cancer Center had accidentally faxed the pharmacy a month-old pregnancy test instead of my current one (what?), and now the pharmacy and the drug company were all riled up, and the time to fill the prescription was about to expire. Once the prescription-filling process has been started, everyone involved (me, the doctor's office, the pharmacy, and the drug company) only gets seven days to complete it. If you're not done when the time runs out, you have to start the process ALL OVER AGAIN with a brand new blood test and everything. It all got straightened out, and the new Revlimid (my last cycle for about two months!!!) will be here on Monday, but it was a stressful afternoon. While the drug drama was going on, WCK refused to take a nap and then threw up in her crib ... on her one-and-only "If anything happens to this blankie I shall die" blankie ... after eating blueberries. She's completely fine now, but have you ever dealt with blueberry throwup on a beloved blankie? Oh dear.

Bad afternoon. Tomorrow will be better. Deep breath.

Tuesday, September 04, 2007

Dinosaurs and Donald's

I hope everybody had a good Labor Day weekend. We mostly hung around the house, except on Sunday when we drove down to Powell Gardens to see an exhibit called "Jurassic Garden". This was a bunch of life-sized, realistic-looking (well, as far as we know) dinosaurs on display throughout the botanical gardens. It was a really nice way to spend the morning. WCK is really into dinosaurs right now, which is so funny to me. She's been known to run screaming in terror from her Winnie-the-Pooh DVD, but a life-sized T-Rex doesn't shake her up at all. Here's a photo of one of the dinosaurs on display:

She didn't find this the least bit scary. Afterwards, we went to McDonald's (which I find a little bit scary), and I think she enjoyed that more than the dinosaurs. WCK almost never gets to go to McDonald's. She's still talking about it. "Donald's exciting," she says.

Today I was back at the Cancer Center. I know I just had a bunch of tests last week at Mayo, but I still have to go see Dr. GPO every four weeks to get my prescription renewed. Because of all of the rules and regulations with Revlimid, you can't just get refills; you have to go see the doctor every single month. Here's what I have to do every four weeks to get my 21-day supply of pills:

1) Go to the Cancer Center; have a million blood tests, including a pregnancy test, which is required by the drug company every single month. Meet with the doctor so he knows the side-effects aren't killing me.
2) Call the special oncology pharmacy in Texas to remind them that this is the week I need to renew. They then call back to let me know that they are "faxing something to the doctor."
3) Wait around for them to fax whatever to the doctor.
4) Call the drug company to take a patient survey over the phone. This is when I reassure the electronic Speak 'N Spell lady that I'm not pregnant.
5) Wait some more for the pharmacy to call back to let me know that everyone has approved everything; give them my credit card number for the co-pay; listen to the pharmacist warn me about side effects.
6) Wait around for the delivery guy to show up with the Revlimid.

As I was typing this, I realized that I DON'T HAVE TO DO THIS NEXT MONTH!! Woo hoo! I'm so excited about my drug vacation, I can't even tell you.

Saturday, September 01, 2007

Let's hear it for the toys!

A while back, I mentioned I was heading up a service project for my stay-at-home-moms group. It was a "Treasure Box" drive for Children's Mercy Hospital here in Kansas City. We collected little trinket-type toys -- things like Hot Wheels or little stuffed animals -- to be given to kids who are outpatients at the hospital. I'm really happy to say that yesterday we dropped off approximately 630 toys at the hospital!! Woo hoo! I was able to purchase many of these toys using donations given by people who read this blog, so thank you, thank you! You will all be getting "real" thank-you cards in the mail soon. Our group really appreciated all of the support.

In other news: I didn't hear back from the insurance company yesterday, but I did get a nice letter from the Mayo Clinic letting me know that I'll have help from the Medical Social Services department. They help you with everything from finding lodging to dealing with financial issues to finding a bone-marrow-transplant support group, etc., etc. I'm not sure how much help we need, since I'm only having a harvest right now, but it's nice to know there's a department to help out with all of this and they won't just leave us hanging.

Also, Geraldine Ferraro, who has had myeloma for nine years, was on the Today Show the other day. Here's a link to an article and the video of the segment: