Saturday, March 31, 2007

The butt-kicking will resume ... after I complete this paperwork

Yesterday's appointment was incredibly frustrating. It's like I waited all of this time to get in to see the Wizard, expecting him to send me back to Kansas immediately. Instead, I find out I have to go mess around fetching the broomstick of the Wicked Witch of the West.

Jay and I expected to walk in there and find everything all set up with a plan and a schedule in place. I'm usually not that anal about schedules, but I worry about finding care for WCB while I have to be off being a cancer patient. Instead, we found out that Dr. GPO has been out of town, so he didn't get a chance to talk with Dr. H or read her latest report on me. Fortunately, I'd brought along my own copy of the report, which went into a lot of detail about all the drugs I'm supposed to take. Dr. GPO said he agreed with the plan and got everything rolling, and sent in a nurse who does all of the dealings with the drug company and the insurance company, and I had to fill out a bunch of paperwork. We were at the Cancer Center for almost three hours.

You see, no doctor can just whip out a prescription for Revlimid on the spot. For about 10 years, a common treatment for myeloma has been Thalidomide -- the same drug that caused horrendous birth defects when it was given to pregnant women back in the '60s. Revlimid is like a new version of Thalidomide -- it's even more effective against myeloma without a lot of the side effects, but it is still just as dangerous to unborn babies. Dr. GPO called it "Son of Thalidomide." If you go to the Revlimid web site, you'll mostly see a lot of warnings, like this:

1. Do not take REVLIMID if you are pregnant or plan to become pregnant.
2. If you become pregnant while taking REVLIMID, stop taking it right away and call your healthcare provider.
3. If you even think the word "pregnant" while taking REVLIMID, stop thinking it right away, and try to think of a completely non-pregnancy-related word, such as "kumquat."
4. If you make eye contact with a pregnant woman while taking REVLIMID, flush woman's eyes with holy water and call your priest.

Because of all of this, all patients taking Revlimid have to be enrolled in a special program through the drug company before they can get a prescription. I had to fill out a big stack of paperwork, promising about 50 different times that I'm not about to get pregnant, that I won't share my medication with anyone, and that I won't donate blood.

I also may have signed something promising that I won't become a sperm donor, but I'm not sure.

Then I had to fill out another stack of forms for the insurance company. The nurse explained that the drug is so expensive that often insurance companies won't cover all of it, and we could get stuck with a bill for around $900 a month and would need to apply for financial assistance. I had to fill out all those financial forms, just in case.

I really don't think a $900 bill going to happen. Really. According to our insurance company's web site, we should be totally covered. But it's another thing to worry about until we know for sure.

We're supposed to hear back from the nurse early in the week to find out about all the insurance stuff, and then we proceed from there. I really have no idea when I have to go back in or exactly when I'll start on the drugs. I guess we will wait and see.

After the appointment, Jay bought me a strawberry margarita. I think I earned it.

Thursday, March 29, 2007

Dr. GPO

Tomorrow I go to see Dr. GPO to discuss this whole Revlimid thing. If you haven't read all the way back to the beginning of this blog -- or in case you forgot -- GPO stands for "Great and Powerful Oz." A little over a year ago, I had a difficult time getting an appointment at the Cancer Center, and the scheduling woman seemed to have the attitude of "Why, nobody gets in to see the wizard! Even I've never seen him!"

I said back then that getting an appointment was like getting in to see the Great and Powerful Oz, and the nickname sort of stuck on the blog. I don't want anyone to think I'm mocking the actual doctor or hinting that he's a fraud or anything. Just this morning, I heard through the grapevine that he went to bat for another cancer patient -- a father of a little girl who isn't that much older than WCB -- who was having trouble getting his treatment approved by the insurance company. I was impressed.

Anyway, who better to help me fight my cancer than someone with a big scary head and firepower? Am I right?



Wednesday, March 28, 2007

American Idol commentary

All right, all right. We all knew that the chubby kid was going to leave sooner or later, but come on, people ...

THIS

NEEDS

TO

STOP:



The horror. The horror.

Don't make me get Mr. Dusty!

WCB is enrolled in our local Parents as Teachers program. This is a free program offered by our school district for kids from birth to age three. Four times a year, a PAT educator visits our home to talk about WCB's learning and development, suggest age-appropriate toys, conduct screenings, those kinds of things. We had our final visit of the school year this morning. Our educator, a very sweet and patient woman I'll call "PAT Lady", was talking about how kids WCB's age can start helping a a little bit around the house. She suggested drawing a face on an old sock that WCB could put over one hand and use to help with the dusting.

I made a visual aid:



PAT Lady put the sock over her own hand and addressed WCB: "Hello!" she said in a cheerful voice. "I'm Mr. Dusty!"


WCB immediately turned away, grabbed on to me for dear life, and screamed in terror. I'm not sure what she found scarier: The appearance of Mr. Dusty, or the actual concept of dusting, an action that WCB has never actually seen performed in her own home. You know now there's going to be a note in her permanent record until she graduates from high school: "Fears Mr. Dusty."


Maybe I could use Mr. Dusty as a discipline tool. "Eat your vegetables, WCB, or Mr. Dusty will have a talk with you."


In other PAT news, WCB passed all of her "tests" this morning with flying colors: She could stack eight blocks, she could pick a kitty out of a lineup of animals, she could point to a dolly's nose. The only test she didn't pass was kicking a ball. Although we play with balls all day every day, she stared at PAT Lady's ball as though she'd never seen one before, again earning another note in her permanent record: "Won't kick ball."


The instant PAT Lady's minivan pulled out of our driveway, WCB exclaimed, "Ball! Kick!" and kicked a ball dramatically across the living room. Sigh.


Mr. Dusty is going to talk to her about this.

Monday, March 26, 2007

Where's Alice when you need her?

Never eavesdrop on other people's conversations. Here's why:

I went to get my hair cut yesterday. This is always a big deal, since it's hard for me to get out of the house on my own. I always go to the same place, but I'm usually just a walk-in, so I take whichever stylist I can get. I ended up with a guy I've never had before. As I sat there getting trimmed, I overheard a high school girl in the next chair over talking to her stylist: "Oh, I hate my school. The principal is a Nazi who sticks his nose in where it doesn't belong. I mean, OK, yeah, I did pose for those photos on that web site, but ..."

Right then my guy said something like, "Do you want me to blah blah blah, technical hairstyle term?"

"Yeah, sure," I said, trying to focus on the story of the illicit web site.

I never did get to hear the end of the story, and apparently "blah blah blah, technical hairstyle term" was "cut your hair like Florence Henderson".

Here's me:




All right, all right. It's honestly not that bad. This morning my friend Brooke said it didn't look any different from my old hair, but I think she was just being nice, because I told her first that her hair didn't look like Diana Ross' in the humidity (It really didn't, though). There is a really short layer on the top, so whenever I look down -- and remember that I'm the mother of a toddler, so I look down about 5,439 times per day -- it all falls in my eyes. Clearly, this is why Carol Brady needed a housekeeper to assist her with her daily life.

Sunday, March 25, 2007

Do you want a tutu, too?

Jay's sisters were here over the weekend, and WCB has decided they are the FUNNEST. PEOPLE. EVER. Jay and I also think they are the funnest, because they babysat while we went out to dinner. We were able to sit down without the waiter handing us a cartoon place mat and crayons. Exciting!

The Aunties also brought WCB a fabulous tutu to play dress up in. Since I never post photos of WCB, I took a picture of her Pooh Bear modeling the tutu, as well as a festive hat I picked up from the $1 bin at Target:



I wish I could look as good as Pooh. That tutu just makes me want to go dance on the lawn and pick flowers.

Thursday, March 22, 2007

What a world! What a world!

Just wanted to let you all know that I haven't forgotten about the upcoming cancer butt-kicking. My appointment at the cancer center is a week from tomorrow. It still doesn't seem real, though, because, as I have been saying for almost a year and a half, I FEEL FINE!! Seriously. I probably feel better than a lot of people who are 100-percent cancer-free. Stupid disease.

Anyway, here is a visual aid to show you how the butt-kicking is going to play out.

This is myeloma:



This is myeloma after I throw a big bucket of Revlimid on it:


Be gone, myeloma! Before somebody drops a house on you, too!

Monday, March 19, 2007

Fairies vs. Squirrels

Years before I had WCB, I looked forward to having kids so I could tell them fanciful stories: Santa is coming. The Easter Bunny is coming. The Land of Oz is a real place that we all hope to visit one day, and that's why we never go to the basement during tornado warnings.

Actually, the last one is a cold, hard fact, and if you try to tell me otherwise, I will kick you in the knee.

Anyway. Today WCB and I were playing in the back yard, and we found a little top part of an acorn. I told her it was a hat for fairies to wear. She smiled, put it on her head, and said, "Hat!" I suddenly found that I didn't get the satisfaction that I thought lying to my child would bring me. I got a little panicky. I tried to cover myself by adding, "... and ... it is also something for squirrels to eat." Suddenly I had this image of WCB taking the ACT test in 16 years, and I saw her coming across the following question:

What is this?






A. A hat for fairies to wear
B. Food for squirrels


I mean, what if the answer to that one question makes the difference between a full ride to Harvard and a lifelong career as a Wal-Mart greeter?

I tried to make up for the whole affair by explaining that the rocks in the back yard are sedimentary, but I think the damage has been done.

Saturday, March 17, 2007

Get it? He's not born yet!

My sister and her family just visited Riverside, Iowa, the Future Birthplace of Captain Kirk. Check it out:




Heh. Nerrrrrrrrrrrrrds!!

If anyone else has visited anywhere wacky, send me the photos. I promise not to make fun of them. Much.

Speaking of my sister and her family, I found out that they're coming to visit us for Easter. My niece (WCB II) is just four months younger than WCB. We're going to have one wild egg hunt in the yard! We went to an egg hunt with our moms' group last Easter, but WCB could only sit on a blanket and look at the eggs, which she seemed to find satisfying. She "found" two, but only because I handed them to her. This year will be very different. I suspect we'll have babies swinging from the trees.

Thursday, March 15, 2007

Broken eyes

WCB has enjoyed wearing sunglasses for some time now, and she recently got attached to a pair of pink ones with Dora the Explorer on the sides. She calls glasses "eyes", and the Dora ones would go everywhere with her. She would sleep with them on, eat with them on. She's addicted to the glasses, sort of like Jack Nicholson at the Oscars. I've gotten so used to seeing her in them that it takes me a while to figure out why people in Wal-Mart are always laughing at her.

Of course, I live in constant fear that the "eyes" are going to break. I wish she'd get attached to something a little more durable than child-sized sunglasses, like, say, a Faberge egg.

Sure enough, yesterday I was pushing her through the park in the stroller when I heard the sounds I'd been dreading coming from the stroller seat: "OH!! NO!! Broken! Eyes! Broken!" Yes. The Dora glasses had snapped apart. It was a dark day for our family. The ride home was a non-stop chorus of "Broken! Broken! Broken!"

We took an emergency trip to Target this morning, and she now has a pair of Disney's Beauty and the Beast glasses, which she's wearing during her nap right now. Whew. I'm realizing the glasses are a little bit like pet goldfish: You only get a few weeks of enjoyment out of them before they die and you have to run back to the store and replace them.

Wednesday, March 14, 2007

Those Oompa Loompas are so wise

I'm feeling much better now. I got eight hours of sleep and have stopped feeling like I'm going to throw up every two seconds. THANK YOU to everybody who has left encouraging comments. They are really helping. I feel like I'm now in strong, butt-kicking mode. I also feel somewhat relieved, because for the past year and a half I've been waiting for everything to go bad. Everything finally did go bad, and ... it really wasn't that bad. Now I no longer have to dread everything going bad, at least for the time being.

I called the KC Cancer Center and got an appointment for March 30. In a weird way, I'm almost looking forward to getting the drugs, so I can start watching them torture the heck out of the cancer. Plus, nobody wants this to happen to me:



What would the Oompa Loompas have to say? I think it would go a little something like this:

Oompa Loompa doompadee doo
I've got a perfect puzzle for you
Oompa Looma doompadah dee
If you are wise you'll listen to me

What do you get when your albumin's bad?
Your red cells are tired and your white cells are ... sad?
You could break a bone if you fall down the stairs
It's not like you're going to ... lose ... your ... hair ...
Just take the stupid Revlimid

Oompa Loompa doompadee dah
Kick cancer's butt and you will go far
You will live in happiness too
Like the Oompa Loompa doompadee doo

Tuesday, March 13, 2007

I'm going to kick this cancer's butt

The good news from my appointment: I've managed to lose one pound since January, and I got weighed with a big sweater on and everything. I feel I have to focus on the one highlight of the appointment since the rest of it wasn't so good.

My hemoglobin has continued to drop, despite the extra iron I've been taking every day. It's now 11.2 (normal is 12). My white blood cells have now dropped below normal, and my M-spike is up to 4.9. My albumin has also dropped below normal. I asked Dr. H to explain the albumin. She said it's a good protein that your body needs. It does a lot of different things for you, and if it gets really, really low, your blood vessels get dehydrated and you puff up like the Willy Wonka Blueberry Girl. OK, she didn't actually use the medical term "Willy Wonka Blueberry Girl", but that's what I gathered from her description of albumin-deficient people. And we don't need that to happen to me, so ....

I have to start taking medication. A Big Bad cancer drug called Revlimid and a steroid.

Crappity crap crap crap.

The dumbest part is that I don't feel ANY of this going on in my body. Maybe if I felt yucky all the time, I'd be more into getting the medication, like, "Yeah, give me something to make me feel better." It's actually not an emergency for me to get started on the drugs right this second, but Dr. H said we need to start the ball rolling in the next month or so before I break a bone or something. I guess I'd rather be on drugs than break a bone.

So. I need to make an appointment to see Dr. GPO here in Kansas City sometime in the next few weeks. Dr. H is still going to oversee everything -- she's going to give him a call to discuss my case -- but I have to see a doctor every month in order to get my prescription refilled, and we can't drive up to Mayo every single month. We will still go up there every few months, though. It'll probably be about a month or so before I'm actually taking the medicine.

Dr. H made it sound like it wasn't going to be all that bad. Each cycle is one dose of Revlimid a day for three weeks followed by one week off. One day a week, I will also take a steroid pill. For the first month, I'll probably need blood tests once every week or two to see how I'm tolerating it, and if I'm doing OK, I'll only need to go to the doctor once a month to get my refill. It's not really chemo, so I'm not going to go bald or have to spend time at the hospital or anything. Really, things could be a lot worse.

Revlimid is a brand new drug that was approved by the FDA last summer. It's been shown to have really good results -- especially on people who haven't had any treatment before, like me. Some people who started taking it in the clinical trials have been able to keep their myeloma under control for several years. Dr. H said it is also really well-tolerated, as far as side effects go. The bad side effects (moodiness, overall yuckiness) will come from the steroid. Moodiness! I can't wait!

Anyway. I reacted to the news by not being able to eat anything for dinner except a couple sips of a McDonald's milkshake, which I cried into and then later threw up at a rest stop in Iowa. I'm not sure which was more mortifying: the public puking or the public crying. I don't cry in public as a general rule. Not at funerals, not in oncologists' offices, not when I saw Steel Magnolias in the theater. It's not that I don't feel like it; I just don't do it. So. That's enough with the public crying. There's no crying in baseball.

Now I'm feeling better, and I'm trying to think of this as a chance to FINALLY kick this stupid cancer's butt. You messed with the wrong girl, you stupid cancer cells. Put 'em up! Put 'em up! Which one of you first? I can fight you all together if you want. I can fight you with one paw tied behind my back. I can fight you standing on one foot. I can fight you with my eyes closed.

I'm not afraid of anything. Not nobody. Not nohow.

Monday, March 12, 2007

Back in St. Olaf

Here I am in Minnesota. I'm on one of the computers on the tenth floor of the Gonda Building, waiting for my appointment with Dr. H at 3 p.m. I dropped off the Pee Pod and had blood drawn this morning. I always get nervous when I finally see my blood in the little test tubes, because I know they're going to whisk it away and the blood is going to be totally out of my control. I watch the lady slap the labels on the tubes, and I start to think maybe there's something more I could do, like, I don't know, invent a time machine and go back and eat more iron-rich foods to raise my hemoglobin. I wonder all day how the blood is getting along without me. I sort of wish I could come along to the lab and stand there to keep the blood from betraying me.

Behave yourself, blood!

Anyway, I got a comment on my last post from Amanda, who said that she thinks she's like Rose from The Golden Girls. ME, TOO!! All of them crack me up, but Rose is by far my favorite. I want to be Rose when I'm old. Anyone else have a favorite Golden Girl?

It's almost 2 p.m. now. I guess I should think about getting myself checked in. I'm sure there will be paperwork. Wish me luck -- again.

Saturday, March 10, 2007

My Pee Pod's packed; I'm ready to go ...

We take off tomorrow. I'll try to update from Minnesota. The drive shouldn't be too bad; I have a portable DVD player and the final season of The Golden Girls. Oooooh yeah!

Anyway. Wish me luck.

Thursday, March 08, 2007

The Big 200!

This is my TWO HUNDREDTH post. I know! I was a little shocked myself. I can't believe I've come up with 200 things to write about.

I started searching for a happy photo that could help me celebrate my big milestone. Believe me, I had the most innocent intentions. I was looking for a cute picture of all of the Muppets from Sesame Street having a party. Instead I found this. I know. It is terrrrrrrrrrrible. Don't let your kids see it. If WCB saw it, I'd have a heart attack:






The funniest part is Grover's cigarette. Heh.


More interesting news out of the Mayo Clinic: In my last post, I told you about a Mayo clinical trial that uses the measles virus to fight myeloma. Now researchers there have discovered that a form of mold may be able to fight myeloma, too. Here's a link to an article about it.
Mold. Interesting. Now I have an excuse to never clean out the refrigerator. "But I'm fighting cancer!"

Tuesday, March 06, 2007

It's that time again

I keep forgetting to mention our upcoming trip to the Mayo Clinic. I don't like it when The Adventures of Cancer Girl has to go back to being all about cancer. I just watched an episode of House where Hugh Laurie was faking a deadly brain tumor so he could get his hands on some good drugs. Instead of thinking Dr. House was evil, I thought, "Wow, that would be the greatest thing EVER! I'd love to be able to say, 'Ha! You all thought I had a horrible disease, but I was only FAKING! I TOTALLY don't have cancer! HA! HA! HA!'"

Wouldn't that be cool? All those trips to "the Mayo Clinic"? They were really to Vegas. That jug of "pee" I hauled everywhere I went? It was liquor.

Anyway.

We leave on Sunday (WCB will be with my parents, or as she calls them, Me-Ma and Be-Pa). I get blood drawn and turn in the Pee Pod first thing Monday morning, and then we meet with Dr. H in the afternoon. Hopefully we'll be able to leave right after that and be back Monday night. I don't expect any horrible news, because I feel really good, but you never know.

Speaking of the Mayo Clinic, here's a link to some really cool news. Mayo just opened a clinical trial for myeloma patients using ... the measles virus. Cooooooool.

Thursday, March 01, 2007

Mysterious spaghetti and parades

We had spaghetti for dinner last night. I give WCB a really big pile of noodles -- sans sauce -- because the majority of the noodles end up on the floor or in the pocket of her bib instead of in her mouth. After we finished dinner, I cleaned up, we played for about an hour, she had a bath, put on fresh pajamas and went to bed. When I went in to check on her a few hours later ... there was a dried spaghetti noodle stuck to her face. Where did it come from? How did it survive the bath? I've been fixated on it all day.

WCB has invented a new game called "Parade". First, we find anything that can be a musical instrument: It's usually a pie pan and a spoon, although we also have a kazoo and an old plastic water bottle filled with beads that works as a maraca. Then we march around the dining room table. Again and again. And again. And again. When Jay gets home, we have to start a brand new parade with the three of us. WCB is always Grand Marshall. Last night, I gave her the still-inflated helium mylar balloon left over from Valentine's Day so we could pretend it was Mighty Mouse and we were in the Macy's Thanksgiving Day Parade. I think next time, we'll stop in the middle of the dining room and lip sync to a brand new Broadway show. Al Roker can host.