Saturday, May 31, 2008
On the way to Rochester, we'll stop at my sister's house for a visit. I've been informed that we'll be attending a surprise birthday party for Pepper. Who is Pepper?
Is it wise to throw a surprise party for someone who usually reacts to surprises by peeing on the rug? I'm not sure, but it's not my rug. My sister loves to plan dangerous surprise parties. A couple of years ago, she planned a huge surprise party for our mom, who has a history of heart problems. Some people questioned the wisdom of jumping out and screaming "Surprise!" at a cardiac patient, but the party was a huge success and it did not kill Mom.
In other news, WCK still talks nonstop about Neighbor Boy, but he seems to have lost interest in her. Apparently, her playhouse (now home to a thriving daddy-long-leg colony) is no longer a big attraction for him, so he doesn't pay a whole lot of attention to WCK. We sit in the playhouse every afternoon, fighting off daddy long legs and watching him bounce on his backyard trampoline, oblivious. I imagine this situation is going to reverse itself when she is 18 and stunningly beautiful and can't spare a minute for him. Of course, at the rate we are going, she will still not be potty trained at age 18, but that will only add to her mystique.
I imagine Neighbor Boy throwing rocks at our windows, screaming like Marlon Brando in Streetcar on our lawn. In this fantasy, he is still wearing his Spider-Man outfit and bike helmet.
"Listen, Neighbor Boy," I'll say, as the rocks whiz past, "you should have come over to play Duck, Duck, Goose more often when she was three. Right now she is busy packing her things for Harvard."
Neighbor Boy will curl up in the fetal position on the lawn. Jay will need to mow around him, or at least instruct the housekeeping robots to mow around him. This is the future, after all.
And she doesn't have to go to Harvard, but WCK repeatedly tells me that she wants to be a dinosaur when she grows up. I imagine Harvard must have an excellent pre-dinosaur program.
Thursday, May 29, 2008
I'm glad I didn't spend an entire month freaking out about last month's results. That would have been wrong. Now I can focus on more important matters, such as trying to get tickets to the New Kids on the Block concert. Order has been restored to the universe.
Wednesday, May 28, 2008
I think these books are intended for, like, 12-year-old boys, but they're hilarious. They're especially good reading when you are sitting around a doctor's waiting room. The third one doesn't come out until January. I can't wait.
A sample page:
Tuesday, May 27, 2008
It was really weird, but I barely felt the dex crash this weekend. I still felt a little yucky, but nothing like before. I'm hoping this is a new trend, but I don't want to get too optimistic.
Today a nurse from the Cancer Center called to tell me ... that my results are not back yet. Oh. Thanks.
Monday, May 26, 2008
The other night, Jay and I watched I Am Legend. In this movie, doctors cure cancer using ... the measles virus. Then everything goes horribly wrong. The virus kills nearly everyone on earth and turns everyone else into rabid, flesh-eating zombies who only come out at night. Will Smith is the only human in the entire world who is unaffected, and he must fight off said zombies. It was one of the scariest movies I've seen in a long time, and I highly recommend it, as long as you are not home alone. I'm rethinking how cool that measles virus clinical trial sounds, though.
Then I got to thinking: Cranky, hungry zombies who are up all night? Maybe they took dex with the measles vaccine.
Saturday, May 24, 2008
Yesterday was my monthly appointment at the Cancer Center. My CBC results were all great. White cells were slightly low, but my hemoglobin is still awesome at 12.9. Dr. GPO walked in and said, "You didn't get too worked up over last month's results, did you?" Um. I'm obsessed with last month's results. I have this giant "2.1" in my head at all times. I spent several weeks going shaky with fear whenever I thought about last month's results, which is pretty much all the time. I'm over the shaky-with-fear phase, but I still think about it nonstop. I'm trying to be practical. The stem-cell transplant that I'm sure I'm going to need is all planned out in my head. At least I'll get to wear cool hats and won't have to worry about blow-drying.
Dr. GPO launched into his speech about how THIS IS NO BIG DEAL and he is NOT AT ALL WORRIED. He says my myeloma is still under complete control because none of my other numbers (hemoglobin, kidney function, albumin, etc) are doing anything bad. He thinks that with the re-addition of the dex, my M-spike should go shooting back down. It was a very happy speech, which I guess I appreciate, but I've heard happy speeches from him before, only to have bad test results come back and cancel out the happy speech. Like the first time I ever saw him: "Oh, this is NOTHING. You probably just have some extra protein floating around in your body." Hmmm. I totally fell for that one.
Anyway. I should get the results next week, and then I'll have another test June 2 at Mayo.
As for the dex, I'm now in the middle of my third dose since starting back on it. Things are slightly better than before. Still yucky, but better. The nurse at Mayo suggested taking it right before I go to bed instead of first thing in the morning. I was really skeptical, but this has actually helped so far. I sleep through a lot of the yuckiness on the first night, it starts to kick in and make me feel perky by the time I wake up, and it starts to wear off by the second night. I still have the infamous Dex Crash after that, but I'm not sure there's a way to avoid that one. It's like a tired, groggy, my-brain-doesn't work withdrawal feeling from the dex. My last crash, though, didn't seem as bad as others I've had. I was actually able to take WCK to Penguin Park, which is one of the wildest, most fun parks in our area. I've had dex crashes in the past that would have rendered me completely unable to deal with the concept of a 20-foot kangaroo:
Friday, May 23, 2008
Today I got my official invitation to the Annual Judy Garland Festival in Grand Rapids, Minnesota. I've only been to this one time, in 2000. I met six of the surviving Munchkins, and I managed to make them all mad. The autograph line was very disorganized. I didn't know that you were supposed to buy a photo from EACH Munchkin and have them autograph it; I only bought one photo and took it around to all of them. Apparently, Munchkins rely on the income from photo sales, and they were pretty annoyed with me. The guy from the Lollipop Guild gave me the Evil Eye.
Anyway. I got my invite for this year. We can't go, but one of the events is "Judy Jeopardy" and the web site promises "cash prizes!". Dude! I would not be confident in my abilities at any other kind of trivia contest, but I could TOTALLY win Judy Jeopardy. I could be the all-time champion. Maybe I will be able to go next year. I'd better start training.
Thursday, May 22, 2008
The well waiting room has, like, two ripped up paperback books and one of those "wooden beads on a bendy wire" toys. I don't know the official name of this toy, but all parents must know what I am talking about. This is always the toy you see in waiting rooms at doctor's offices, banks, etc. I've never actually seen this toy in anyone's home or in a toy store. It must come from a waiting-room-supply catalog. It's probably the least exciting toy ever.
Of course, WCK never wants to wait in the well room. She was drawn to the sick waiting room like a moth to a flame. While I was at the check-in desk trying to dig out the insurance card and co-pay, she was already at the sick table, playing with a Disney Mr. Potato Head. (It had mouse ears). I thought, "Ah, I don't want to be one of those paranoid parents. What's the worst that could happen?" I let her keep on playing with the sick toys. In my defense, I knew that within five minutes she would announce that she had to go "pee." Going pee in public never involves actual pee. It involves finding a restroom, checking out the inside of the restroom, and then washing hands. I was right. Five minutes later, the restroom was inspected, and her hands were washed.
Apparently, the hand-washing was not enough. Today, she has some kind of Martian Death Flu. She's been running a fever and either sleeping or watching "The Land Before Time" all day. I called the doctor's office, and the nurse said not to worry unless the fever goes over 105 or she gets dehydrated. So far, she's fine on those counts.
Now I know why the sick room has the good toys: Repeat business for the doctor's office. Very clever.
Most of the photos are multi-colored blurs, and a lot of them are of adults' legs and feet. I guess that is how she sees the world, after all. Some of them are quite artistic, though. Here are some arty shots of her new trike:
In this one, you can see her little pink Disney Princess shoes:
Wednesday, May 21, 2008
"Do you get yourself dressed in the morning?" the doctor asked WCK.
"YES!" exclaimed WCK enthusiastically.
The doctor believed her and checked off the "Dresses Self" box. I guess if "getting yourself dressed" means "running naked through all of the rooms upstairs and laughing like a maniac while Mommy chases you with your clothes", then this is technically true.
The doctor asked her her name and age (which she knew right away), and then asked if she was a boy or a girl. WCK acted like she didn't know this one. As soon as we left the office, I asked her again.
"WCK, are you a boy or a girl?" I asked.
"I'm WCK!" she said indignantly. I think this is an excellent answer.
Later, she did tell me that she is a girl, and then correctly identified several friends (including the infamous Neighbor Boy) as either a boy or a girl.
"Is Mommy a boy or a girl?" I asked.
"Mommy's nothing," she said.
Tuesday, May 20, 2008
"Did you know the New Kids on the Block are going to be on the Today Show this morning?" he asked.
"Mmmmfpfh!!" I said. (This is Barely Awake Talk for "WHAT? NO! NOBODY TOLD ME THIS! WHAT?")
"I will go set the TiVo for you," said Jay. And he did.
Not many husbands would offer this level of support, particularly when a First Imaginary Husband was involved (My FIH would be Donnie Walhberg). By the way, do you think Donnie was wearing that hat because he's probably bald now?
Sunday, May 18, 2008
We had a party for her yesterday at a local park. The weather was amazing, and we had a really good time with lots of family and friends and a very cool dinosaur cake from Hy-Vee. It featured volcanoes that were nothing more than giant mounds of green frosting (oozing frosting lava, of course), and decorative plastic dinosaurs that really made roaring sounds. I made dino hats for all the kids (actually, I think they were really monster hats ... but they kind of looked like dinos), and we tried a game where they could pick prizes out of a bucket using one of those opening-and-closing dinosaur heads on a stick. I don't think this 33-year-old had the fine motor skills to pull this off, so it was a bit of a challenge, but fun.
I hope everybody who came had a good time. We sure did. Now I have to start planning next year's party. I keep thinking that some year I need to do a Wizard of Oz party, of course, but that would have to be my Ultimate Party Masterpiece. After that, I'd have to retire undefeated from the world of parties.
Thursday, May 15, 2008
Just as in the movie, my innocent daughter is in love with a rebellious, devil-may-care older man. He lives next door. He is eight. I don't know if he can dance, but he can ride a bike without training wheels.
The affair started over the weekend, when Neighbor Boy was lured into our yard by WCK's new playhouse. He and WCK ended up playing together for about an hour or so. He was so unlike any of the men her own age, and he broadened her horizons: He taught her how to play "Duck, Duck, Goose."
The next day, Neighbor Boy and his family went out of town for a week, and WCK has been pining away ever since. She calls him on the toy phone several times a day and keeps asking me when he is coming back. She always wants to play "Duck, Duck, Goose", which isn't quite the same when you only play with two people.
Just before bedtime last night, she announced, "Mommy, I love (name of Neighbor Boy)."
I just hope we aren't having this same conversation when she is 15 and he is sitting in my driveway on the back of a Harley.
Wednesday, May 14, 2008
WCK is officially corrupted. Here is the full story: My child recently started "helping" put the dishes away. She stands on the counter and we hand her plates and bowls from the dishwasher, and she puts them in the cupboard. This means that putting the dishes away takes approximately 10 hours, but it is one of her favorite activities. When she is done with the dishes, she leaps off of the counter into my arms, flings her legs up high, stretches out her arms, and tells me she is a "fancy dancer". We then dance around the kitchen while I sing "Time of My Life." Last night, she sang the whole song on her own, grinning uncontrollably. It was the FUNNIEST. THING. EVER.
I know this must make me a terrible mother. Dirty Dancing was released when I was 12 years old. It was rated PG-13. My parents had a Horribly Strict Rule that I was not allowed to see PG-13 movies until I was actually 13. This was The Most Unfair Thing In The World back then, although WCK won't be allowed to see PG-13 movies until she is at least 35. Because Dirty Dancing was all the rage, though, and because I would clearly die if I couldn't go see it, my parents said they'd watch it first. If it was OK, I'd be allowed to see it.
My parents went to see the movie, and somehow (barely) managed to escape from the theater alive, although they might have temporarily lost their eyesight from the horrible things leaping off the screen. The verdict: This was a movie SO EVIL that I could not see it now; I could not see it when I turned 13; I. COULD. NOT. SEE. IT. EVER.
Some years later, my parents went out for the evening and I secretly watched it on cable. I was not struck by lightning. And now my mom thinks it is a "cute" movie. Where was this attitude in 1987?
Anyway. Now WCK has been officially corrupted by Dirty Dancing, although I couldn't get her to watch the above clip on YouTube for longer than a few seconds. "Where are the dinosaurs, Mommy?" she said. "Where are the dinosaurs? Where are the dinosaurs? Where are the dinosaurs?"
"I have good manners, Mommy," she said.
Ah, I thought. This would be an excellent time for an "educational" conversation.
"What are you supposed to say after you burp?" I asked her.
WCK thought for a minute.
"Thank you for the food."
Thursday, May 08, 2008
After all I went through to get the MRI, though, a tiny little postcard with a scribbled note on it seems a little anti-climatic. I think the hospital should provide a service where someone comes and stands on your lawn holding a banner that says, "NORMAL BRAIN SCAN!!!" He/she could set up a CD player blasting "We Will Rock You" and encourage passing motorists to honk. There could be a variety of banners for every kind of test: I imagine "YOU ARE NOW CANCER-FREE!!" or "YOU'RE NOT GONNA DIE!!" would be very popular. They could even put a good spin on bad news. There could be a banner saying, "OK, SO YOUR M-SPIKE WENT UP A LITTLE. YOU'RE STILL ALIVE, AREN'T YOU? LET'S NOT FREAK OUT! WOO HOO!"
I know this would be a very popular service. I'd sign up for it.
Wednesday, May 07, 2008
Did I mention it was free?
I know a lot of people who have signed up, and it's incredibly easy. The Donor Program people will mail you a bunch of Q-Tips and you'll rub them on the inside of your cheek and mail them back. Very painless. You'll then be added to the registry list until you're 60 years old, and you'll be contacted if you match a patient in need.
Who knows? Maybe I'll need your marrow someday. I bet if there's some huge cosmic coincidence and I match someone who reads this blog, we could end up on Oprah.
Tuesday, May 06, 2008
I just heard back from the Amazing Mayo Nurse. I called yesterday, and when I told her about the rise in my M-spike, I heard a shocked gasp on the other end of the phone. It was not a sound you want to hear coming out of a medical professional after she learns your test results. She was very nice and said she'd check with Dr. H and call me back.
Just as I expected, Dr. H wants me back on the dex, dang it. She did say, however, that I can try starting at 8 mg per week. When I was last on it, I was on 12 mg per week. I should be able to handle 8 mg okay for a little while; hopefully we can talk over the dex situation in more detail when we go see Dr. H in person next month.
The nurse was really sympathetic. "I know you didn't want to go back on it," she said, "but it sure sounds like you need it."
Dang it, dang it, dang it.
Anyway, I'm cheering myself up the best way I know how: By posting a video of Gene Kelly and Frank Sinatra dancing in sailor suits. Is there anything better?
Saturday, May 03, 2008
Because I didn't have enough to put up with this week, after all of the doctor appointments, rising cancer levels, and MRIs ...
This morning, someone posted an Evil comment on my blog in response to our moms' group disbanding. (Yes. Because of a stay-at-home moms' group, people. I'm not making this up.) It was posted anonymously, of course, but I subscribe to a service that tracks all traffic to my blog. Nothing is ever 100 percent anonymous on my end. I left the comment up most of the day today; I couldn't decide if I should delete it or not. On the one hand, I wanted everyone to see all of the negativity that stemmed from being a part of -- and attempting to disband from -- our international group.
On the other hand, this is my cancer blog, for crying out loud! There is no room for negative vibes here.
I ended up deleting it, and I also had to delete the post from the person who jumped to my defense, because I worried a war was starting. Thanks, though, Allyson!
Seriously. I'm going to spend the rest of my life fighting with an incurable, fatal disease. I don't have the energy to fight with a person over something so insignificant.
Well, unless it's a West Side Story-style gang fight with lots of jazzy music, high kicks, and snapping. Then it would probably be really fun.
I hope it's not a tumah.
Anyway, back to my story. Yesterday while I was waiting endlessly for the MRI, I got a message on my cell phone from my nurse at the cancer center, letting me know that my M-spike is now 2.1. Just four weeks ago, it was 1.7. My M-spike has NEVER gone up that fast, even when I was off treatment -- and it's never gone up at all while I've been on treatment. It wasn't a grim message or anything; it was more like, "Your M-spike is 2.1! Have a good weekend! Buh-bye!"
After I rushed home from the MRI, I spent the next couple hours playing phone tag with the cancer center. The nurse finally relayed that Dr. GPO is not at all worried, but the rise could be the result of stopping the dex. He said he'd leave it up to me: I can wait and see what my next test result says and make a decision then, or I could start back on the dex now.
I don't know if I've ever mentioned this, but I hate dex.
I was pretty freaked out yesterday, convinced the Revlimid has quit working, picturing cancer cells running wild, sure of a looming stem-cell transplant, imagining myself back in the apartment in Rochester again, sick, bald, line hanging out of my neck, banned from seeing WCK because of my weakened immune system.
But I'm trying to calm down. I'm sure it'll all be fine. FINE.
I think I'll give Dr. H a call this week to see if I can get her opinion. I have another blood test at the cancer center in three weeks, and I go to Rochester to see Dr. H in person in four weeks. Argh. I'm tired of having cancer. Can I give it up and pick a new hobby? Cross stitch? Badminton? Stamp collecting? Anything boring would be preferred.
Yesterday, I was supposed to have an MRI. This test actually has nothing to do with the myeloma. I've had bad headaches off and on for pretty much my whole life. I've always thought, "They're just headaches. What can I do?" My dad has always had headaches. My grandma always had headaches. It was just my genetic curse, sort of like my infamous motion-sickness problem. I've tried a few things: chiropractors, massage therapy; I even saw a couple of occupational therapists who were convinced my neck and back muscles were all screwed up. Nothing has helped. Since I've had WCK, the headaches haven't gotten any worse, really, but it has been much harder to cope with them while taking care of an infant and then chasing after a toddler. About a month ago, I hit an all-time low as a mother when my head hurt so bad I couldn't fix dinner for WCK. I turned on her favorite cartoon, moved her little table and chair in front of the TV, gave her the most effortless foods I could find (a Lunchable, a fruit cup, and a box of raisins), and then crawled back to the couch.
WCK studied me with concern.
"You have a headache AGAIN?" she said.
I told her I did.
"Then is Daddy going to come home and play with me?" she asked.
Oh, it was so sad. I called my doctor the next day.
Now, this is my regular, lonely, non-oncologist doctor. The one I hardly ever see. She said that everything I'm describing sounds like migraines, and she gave me an AMAZING migraine medication called Imitrex. This is a miracle drug. I take it at the very first sign of a migraine, and I haven't had a headache in a month. My only complaint about it is that it should be spelled "Imatrex", so it would also spell "I'm a T-Rex." I guess I can't have everything.
Anyway, even though my doctor is 99.999999 percent sure these are migraines, she wants me to have an MRI to rule out anything else. (I assume "anything else" = "horrible brain tumor") I had an appointment yesterday at the hospital right by our house at 1:30 p.m. Jay came home to look after WCK, but he had to leave again for an important meeting at 3:30. He was confident I'd be done by then; I was pretty skeptical. If I've learned anything from the medical community in the past few years, it's that most procedures end up having an epic wait time. Still, I decided to go anyway.
I showed up at 1:30. I checked in with the woman at the admitting desk and gave her my name, my appointment time and told her why I was there. She looked at some official-looking computer print-outs and sort of shuffled them around and told me to have a seat. The only seat open was directly in front of her desk. I sat there and waited for someone to call my name.
And waited. And waited. And ...
Around 2 p.m., Front Desk lady gave me a funny look.
"Are you a patient here?" she asked.
"Um," I said, wondering if I was on a hidden-camera show. "Yeah."
"Why didn't you check in?"
"I .... did." Seriously. Where are the cameras?
"With who?" she asked, seeming sincerely confused.
"Um," I said. "With YOU?"
She stared at me. "I don't remember you," she said.
Despite the fact that I had spoken with her and then sat directly in front of her desk for 30 minutes ... SHE DID NOT REMEMBER ME.
I'm not making this up.
I gave her all of my information again, and apparently was checked in for real. I learned later, however, that I was now considered "late", and they'd let other people go in front of me. I had to wait some more, and then fill out a mountain of paperwork, followed by more waiting. By now it was nearly 3 p.m., and I was told I wouldn't be called back for at least another 15 minutes. I called Jay, and we talked over the options, like bringing WCK to his work meeting. Um. Yeah. That wasn't going to work. I had to leave before having the MRI.
I got a call about an hour later from a cranky scheduling woman, who tried to lay the blame on me. I tried to explain the Twilight Zone Receptionist, but really, I couldn't. I got another appointment for today, which I have to leave for in about two minutes. I'll let you know how it goes. If I even get in.
That's not the end of my medical, woes, though. Stay tuned for Part II: M-spike drama.