Tuesday, May 29, 2007

Lots of screaming and blood ...

... but not both at the same time, thank goodness.

WCK had her two-year checkup this morning. We'd been preparing for this for weeks. I got her a toy doctor kit, and we'd been giving checkups to her stuffed animals and talking about how great it was to go see the doctor. We'd been watching "Elmo Visits the Doctor" faithfully and discussing it on a regular basis. WCK seemed enthused. I thought we were ready.

The second the doctor walked through the door, WCK started screaming and didn't stop until the end of the appointment. I missed a lot of what the doctor was saying. The important tidbits: WCK is of average weight, average height, and above-average intelligence. But we already knew that.

As soon as we got home, WCK went back to giving physicals to her stuffed animals, as though she had just loooooved her doctor experience. Mmm hmm.

Then in the afternoon, I went to my own doctor without screaming. (At least I've been paying attention to what Elmo has to say). My hemoglobin is back up to 11.3 (woo hoo!), white cells are back into the normal range, and everything else is good. My INR is up where the doctor wants it to be. No problems. I don't go back until June 8, and that's when I have the Big Tests to find out if the Revlimid is working. I'm back on Doctor Vacation until then. Life is good.

Sunday, May 27, 2007

We'll eat you up, we love you so!

Here's a big Where the Wild Things Are update: At least it's not just me.

Last night, WCK informed me -- while laughing so hard she could barely speak -- that this Wild Thing is Me-Ma (that would be "Grandma" to the layperson):

This tiny little guy, who is seen in one illustration riding on Me-Ma's back, is -- hee hee hee hee -- Be-Pa:

She didn't specify which Me-Ma and Be-Pa they were. I guess all four of them can feel free to fight for the titles.

This is Daddy:

This one, she just calls "Chicken":

And, in an odd twist, she named this one after herself:

This makes everything better. You see, Me-Mas, Be-Pas, Daddy, and chickens everywhere: She is laughing with us, not at us. At least that's what she wants us to believe.

Speaking of WCK laughing, on Saturday we took her to the Kansas City zoo. We all had a great time, and WCK was absolutely enthralled; however, having grown up near Omaha I'm a bit of a zoo snob. I believe Omaha has the greatest zoo in the entire world. People aways say, "Really? Omaha?" Yes, really! If you go there and aren't 100 percent satisfied, I will work to get an official Wild Thing named after you.

Anyway, I spent a lot of the time secretly grumbling in my head about how much better the Omaha zoo is, but WCK spent most of the time laughing out loud. We saw a parrot getting wet in a bird bath thing, and she laughed uproariously for a good 10 minutes. Passersby were more interested in watching WCK laughing than they were in watching the animals. Now, all we have to do is say, "WCK, did you see a parrot taking a bath?" She'll think for a minute and then burst into giggles and exclaim, "Funny!!!"

She was also obsessed with a rhino she saw taking a nap. She'll remind us about 10 times a day: "Rhino! Nap! Eyes closed!" She even went as far as to suggest that the rhino needed a pacifier and a clown and a froggy -- her required nap time stuffed animals. I told her that maybe the rhino would ring our doorbell one day and want to nap in the crib with her. She thought it over and agreed that that would be fine. I guess after all those Wild Things, a rhino at the door can't be too scary.

Friday, May 25, 2007

Let the wild rumpus start!

Here's a disturbing moment in parenting: WCK has started consistently pointing to an illustration in Where the Wild Things Are and gleefully shouting, "Mommy!"

It's always the same monster:

Jay said, "Well, you do kind of have the same hairdo."

Oh, great. It was bad enough when I looked like Florence Henderson.

Thursday, May 24, 2007

Happy harvest

In a comment on my last post, my sister wrote ...

"Mom said something about if your M-spike drops to a certain level, then maybe they can harvest your marrow for a transplant at a later date. Is that true? That would be really cool."

Yes, that's true. In fact, a successful stem-cell harvest is one of the goals of my Revlimid therapy. I'll explain ... or try to ...

There are two general types of transplants doctors can do for people with myeloma. They're technically called stem-cell transplants, although I usually just call them bone-marrow transplants, because whenever you say "stem cells" people get all bent out of shape. These transplants, however, involve adult stem cells -- the completely non-controversial kind.

There's an allogenic stem cell transplant, where you get the cells from a donor. There's also an autologous transplant, where you get a transplant of your own cells that have been harvested from your body earlier. With both transplants, you're given a blast of high-dose chemo to kill off your bone marrow, and then you get the nice, fresh cells infused back into your body.

Either one could be in my future somewhere down the road, but the first one they'd give me would be a transplant of my own cells. A donor transplant can be a lot more effective, but it can also be horribly dangerous and kill you. Dr. H talked with us about all of this transplant and harvesting stuff back in March, and she said she'd only recommend a donor one only if every other option had failed. I agree.

The self transplant, though, is a lot safer. It's not going to cure you, but maybe it can hold the myeloma back for a while. Back in the Olden Times (like, until a year or two ago), an autologous transplant was the main treatment for myeloma. It was really all they could do. Now, there are so many cool drugs coming out (like Revlimid) that it's not always a given that a myeloma patient has to have a transplant -- or at least, not right away.

However, there is the possibility that I'll need one (or two, or three) someday, and they want to harvest the cells pretty early before they're all screwed up by a million different treatments. If the Revlimid can knock my myeloma down to a really low level in the next several months, I will most likely head to Mayo to get my stem cells harvested. Dr. H says they'll try to take enough cells for three transplants, and then store them until I ever need them.

She says the whole harvesting process from start to finish can take a couple weeks, but it's not painful or particularly invasive or anything -- it's just really boring. You have to have a bunch of medical tests, then you have a bunch of days of injections to get your stem cells all ready to go, and then they just sort of suck them out of your blood.

So ... I'm not sure when I'll have the harvest. I guess we need to see how the Revlimid is working and then go from there. I'd guess sometime in the fall, but we just have to see.

Anyway. This is the very non-scientific explanation of transplants and harvesting. If you want to know all of the really technical terms, you're going to have to look for another web site. You know, one that doesn't also feature photos of ladybug cupcakes.

Wednesday, May 23, 2007

Round Two

I started the second cycle of Revlimid last night. After another big hoopla with the pharmacy, Mr. McFeely brought it by yesterday morning at the very last minute. If you happen to be a newly diagnosed myeloma patient who somehow came across this blog, here is one piece of advice for you: If anyone in the whole pharmaceutical bureaucracy promises you that "everything is all taken care of" and/or "you don't have to do anything", don't believe them. Do it anyway, even if it makes you look like a giant pain in the butt. When I started the first cycle, the pharmacy told me that they had a system that would automatically alert my doctor one week before I needed a refill, and everything would be put into motion. When I hadn't heard a word by last Friday, I called the pharmacy only to find that some kind of computer error had knocked me out of their system, and, with just one day to go, they didn't know they had to refill anything.

I'm calling really early next time.

But everything is OK now, and I'll actually find out if the stuff is working by the end of this cycle. That's something to look forward to. Just this morning, I read Teresa's blog, where she reported that her husband's M-spike is now COMPLETELY GONE after about four months on Revlimid. HOORAY!

Sunday, May 20, 2007

Martha Stewart I'm not, but ...

... I was happy with the way the cupcakes turned out. What do you think?

My parents came early to play with WCK so I could make them all. It wasn't too hard. My chief complaint is that I did indeed order the wrong size of eyeballs. I think the eyes need to be bigger and buggier. Don't you think the bugs look sort of beady-eyed and suspicious, as though they're plotting something?

Beady eyes aside, the party was a success. We held it at a local park, and we really lucked out with beautiful weather. It was a casual, good time with family, friends, and frosting. (Two-year-olds aren't known for eating cupcakes neatly ... but it was pretty funny to watch. My mom got it on video.) WCK loved the balloons, but wouldn't wear her ladybug hat. I had a whole lot of fun planning everything. Now I only have 364 days to plan next year's. I don't even have a theme yet! Pressure!

Today is Jay's 31st birthday. If you know the Old Man, drop him an e-mail! I think WCK and I are going to take him out to dinner to celebrate next weekend, since this weekend has already been so wild and cupcake-filled. That's the best kind of weekend, though.

Thursday, May 17, 2007

Big day, big girl!

The big day is here! My WCB is two!!

This morning we went to our toddler music class, and then I took her out for a mother-daughter lunch at Panera Bread. She got to have some birthday chocolate milk, so she was in an exceptionally good mood. I know, that's two chocolate milks in one week. It's been a big week. She kept taking sips and exclaiming, "Mmm! Sish-ous!!!" (Translation: Mmm! Delicious!") We had some excellent conversations, including one about the sounds that various animals make and one about how exciting it was that a car out in the parking lot went, "Beep! Beep!" She also let me know that she thinks I'm silly. I asked her who else she thought was silly. The official list includes Daddy, Aunt Kim, Be-Pa (She didn't specify which Be-Pa, but I think they're both pretty silly), and Elmo.

If any of the rest of you make The Official Silly List, I will let you know.

And as much as it pains me, I know today means it's time for a change. WCB is a big girl now; once you turn two, you're officially no longer a baby. Here's the official name change: Beginning today, I have to start calling her WCK: World's Cutest Kid.

My baby's a kid now. I need to go lie down.

Wednesday, May 16, 2007

The Evil Petting Zoo

If you've seen Austin Powers about 100 times like I have, you'll remember the part where Dr. Evil's son, Scott, announces he'd like to run a petting zoo.

"Is it an evil petting zoo?" asks Dr. Evil.

My sister and I find this hilarious, and every time we hear the phrase "petting zoo", without fail, we turn to each other and say, "Is it an evil petting zoo?"

Well, I found it today. The Evil Petting Zoo.

Today there was a "Traveling Farm" event at our local library. WCB and I went to it last year, and it was an actual petting zoo -- animals out frolicking on the front lawn of the library, kids petting them, the usual. WCB and I were both very excited to go again this year. All morning, I told her we were going to see the animals. She even stood next to the door calling, "Animals? Animals?" about an hour before we were scheduled to leave. This might not seem like a big deal, but -- Sesame Street was on. Usually nothing can tear WCB from Sesame Street. A nuclear bomb could go off, and WCB would remain motionless until the end of Trash Gordon. I had to explain to her that the animals were still asleep, but we'd see them in an hour. She seemed to accept that, but, boy, she couldn't wait for those animals to wake up.

We showed up at the library, and ... the "petting zoo" was a tiny trailer -- yeah, a trailer -- containing one chicken, one lamb, one pig, one baby cow, and a pony. We stood in line and then spent about two minutes walking through the trailer. All of the animals were in teeny tiny cages and -- in some cases -- strapped down so they couldn't move. WCB was pretty interested in the pony, but because we were holding up the endless line of toddlers aching to get into the trailer, we had to move on. I had to carry her out while she was screaming, "Pony! AGAIN!!! Pony! AGAIN!!!"

Oh, it was so sad and so pitiful in so many different ways.

What a disappointment. Have I scarred her for life? "Yeah, Mom, remember the time you made me go into that dark trailer with the strapped-down lamb? Remember when you wouldn't let me see the pony again? That's why I'm a serial killer today."

Tuesday, May 15, 2007

Vacation: All I ever wanted

Cycle One is done! Yes, last night I finished my first 21-day cycle of Revlimid, which means I get to spend the coming week on a nice Revlimid vacation. I feel so free.

Visual aid:

I went into the Cancer Center again today. My hemoglobin went back down a little bit to 10.8 (grrr), and my white cells also went down a little. Everything else is normal, but Dr. GPO wants to see my INR a teeny bit higher, so I have to increase my Coumadin dose a little bit. I was also expecting to have all of the tests that show if the Revlimid is actually working, but Dr. GPO said it's way too soon. He's going to wait to test me at the end of the second cycle on June 8. In the meantime, I get to cut back on the blood tests and go in every other week instead of every week. I suppose this is a good thing, considering two different nurses had to dig all around in my arm with a needle again, and I'm getting a nice set of bruises.

So now I have a two-week Cancer Center vacation, too. Again, a visual aid:

Sunday, May 13, 2007

Happy Mother's Day!

Happy Mother's Day everybody! Hope it was a good one. I also hope part of your celebration included signing up to be a bone-marrow donor FOR FREE though the "Thanks, Mom!" promotion at http://www.marrow.org. It's only free until May 21, and then you have to go back to paying $52 to sign up. Signing up is really easy and painless, too. True, I guess if you actually match somebody, then it's not quite so easy and painless, but you could end up saving someone's life. Isn't that worth it in the end?

Really, if it is a fear of needles or doctors or whatever that's keeping you away ... really, it's not so bad. I used to be a HUGE needle wimp. HUGE. Once, years ago, the office where I worked was giving away free flu shots, and I didn't go get one simply because I was scared of the needle. A short while later, just because the universe likes to make fun of me, I got the worst flu I've ever gotten in my entire life. I still didn't get over my needle fear. Nowadays, because I don't really have a choice, I have all kinds of needles in me, and I don't even care. I've had two bone-marrow biopsies, one without sedation. Last week, the lab tech couldn't find a vein and was just digging and digging and digging the needle around in my arm for several minutes, and I didn't even care. It didn't even hurt. You'd think it would, but it didn't.

My point, and I do have one, is if a total needle wimp like me can now withstand multiple bone-marrow biopsies and needles repeatedly digging in my arm, then strong people like you can do anything. So go sign up.

Where was I? Oh, Mother's Day.

Jay and WCB took me out for dinner, and WCB got chocolate milk, so she was absolutely delirious with happiness. They also gave me a gift certificate for a massage, which I realize is the exact same present I got last Mother's Day, but I think it's the greatest present in the world, so I don't care if that's what I get every year for the rest of my life.

Hope you all had an equally happy day.

Thursday, May 10, 2007

I'll wait.

WCB has started saying a few little sentences -- things like, "I see you!" or "I do it!" She'll also ask, "Mommy ... ARE you?" which means, "Mommy, where are you?" Does that count as a sentence? I think so.

Then today she told me, "Daddy eats Cheerios." HA HA! If you've ever witnessed Jay's two-bowl-a-day habit, you know that Daddy is indeed serious about his Cheerios.

But there's one that makes us want to simultaneously laugh and cry: WCB is now entering the Terrible Two phase, which means she never wants to do anything that was someone else's idea first. You could say, "Hey, WCB, let's go hang out at a pony farm, pet puppies, eat candy, and watch Elmo at the same time," and she'd refuse, because it was your idea. If you try to pick her up and move her, her reaction is to go limp, like a protester being dragged away by the police, and fling herself onto the floor. Now, as she slides to the floor she'll look up with a gleam in her eye and then announce matter-of-factly, "I'll wait."

HA! For what? For us to stop harassing her, I guess.

Tuesday, May 08, 2007

Oh, and about your marrow again ...

A while back, I posted how you could become a bone-marrow donor for free. I know a few of you tried it, only to find the promotional code had been used up. Now you have another chance! Check it out!

"Starting May 7th the National Marrow Donor Program is typing people for free! In an effort to help all patients in need, the National Marrow Donor Program kicks off its national Thanks Mom Marrow Donor Drive on Monday, May 7, with a goal of adding 20,000 new donors to the National Marrow Donor Program Registry in two weeks. Thanks Mom will run May 7-21 and sponsor free marrow donor drives online at marrow.org and in more than 350 cities nationwide. Anyone between the ages of 18 and 60, in good health and willing to help any patient is eligible to join, free of charge, from May 7 - 21, at a donor drive in their city or by registering online."

Woo hoo! Visit http://www.marrow.org to sign up!


It's gotten to the point where everybody knows my name at the Cancer Center. I walked in today, and the front desk lady just automatically knew my first name; she didn't even have to look up my chart or anything. I'm like the Norm Peterson of the Cancer Center.

Anyway, I went in for my weekly blood count, and everything is looking really good. My white blood cells and platelets are all normal -- in fact, they're better than they ever have been -- and my hemoglobin is up to a whopping 11.3! A week ago, it was just 10. Now,11.3 still means I'm anemic, but just barely. It's a much better number than 10. They also ran an INR test to make sure I'm still handling the Coumadin OK. My number was 1.5, which is up just a little bit from last week, when it was 1.3. The higher the number, the thinner your blood, so mine is just a teeny bit thinner than before. Still, 1.5 is an OK number for me, and they're not going to change my dose.

Whew. Only one more week of Revlimid, and then I get a week off! Woo hoo!

Sunday, May 06, 2007

Dex, dex, dex

Yesterday was my second dose of dex, and again I got through it OK. I remembered to drink my Diet Coke, so I didn't get a headache this time, and I still got a good night's sleep. In fact, all day yesterday I still felt pretty tired, and this was on 40 mg of dex and caffeine. I've always been really hard to wake up. Lifelong problem.

Today I feel pretty good, although last week the pattern went like this:

Dex Day: Slightly crappy.
Day After Dex Day: Good.
Second Day After Dex Day: Really crappy.

Although last Monday (the Second Day After Dex Day) I was dealing with chronic nosebleeds, a cold, a sick child, an emergency trip to the Cancer Center, and a broken toilet that was leaking through the living room ceiling. (Yeah, I never blogged about that one. My dad drove down and fixed it, and now everything is fine. Thank you, Dad!) My point is, maybe all of that stuff was making me feel really crappy, and not the dex withdrawal. Who knows? I feel like I am constantly in a science experiment, and there is no control group.

Now, don't get me wrong about the sleep: I am REALLY, REALLY happy that I am still able to sleep on the Dex. On the other hand, back before I started taking it and was hearing all of these stories about how I'd be awake for 36 hours straight, I started planning all of these projects I could get done in the middle of the night. I could get a ton of reading done. I could clean out closets. I could go to Wal-Mart when there were no crowds. I could catch up on all of the Oprah episodes I have stored in the TiVo. Now all of my projects are going undone.

Yes, I just categorized watching Oprah as a "project."

Thursday, May 03, 2007

Manah Manah

Here's something to add a little joy to your day. Heh.

The eyeballs are here! The eyeballs are here!

WCB is going to have a ladybug-themed birthday party. I've been working hard on it. My plan is to make cupcakes that look like ladybugs, which is a little bit scary, since I am very non-artistic, especially with baked goods. I wasn't sure how I was going to make the eyes, until I found out you could go online and order tiny eyeballs made out of sugar. A package of sugar eyeballs just arrived at our front door yesterday. They're still sitting in the box, staring at me pitifully, like, "Please don't make us look stupid on the cupcakes, woman."

I hope I don't let them down.

I keep worrying that I ordered the wrong size of eyeballs. I think they're going to be too small. Then I think that if my biggest worry in life is about the size of my fake ladybug eyeballs, then I'm a lucky girl.

In other news: I'm doing a little better. Every week, I'm going to get a call from the nurse at the special pharmacy that dispenses my Revlimid so she can answer questions about side effects and things. She called yesterday and was really helpful. She said drinking a ton of water can help with the fatigue. I've been trying that, and it does seem to help. She also suggested getting a nasal spray for the nosebleeds, and they went away as soon as I started that. It's so liberating to be nosebleed-free.