Friday, June 22, 2007

Headin' for the Hills

First off: There's a gal named Maria who I know through the moms' group, and she told me today that she has two coupons available that will allow someone to register as a bone-marrow donor FOR FREE. That's a $52 value for each coupon. She told me that she has a young nephew who has an immune-system disorder and needs a transplant. The entire family has joined the transplant list, but they still can't find a donor for him. They were able to get these coupons when they all signed up. If you are interested, let me know, and I'll get one of them to you. Or if you're in the moms' group and know Maria, you can ask her!

Next, I was back at the Cancer Center today, but just for an INR test, which is a simple finger stick. It's gone up to 1.9, but that's still within the range that it should be, so everything's just fine. I don't need to change my Coumadin dose. I go back in two more weeks for my next round of big tests to check in on my protein. Hopefully, Spike is still dying.

Finally, the blog is going on a brief hiatus, as Jay, WCK, and I are taking a family vacation to the Black Hills of South Dakota:











Wall Drug is one of my favorite places on the face of the earth. I know that's horribly wrong, but I don't wanna be right.


Anyway, if we can get any Internet access, I'll check in. Otherwise, I'll see you all when we get back. Buh-bye!

Thursday, June 21, 2007

My eyeball is safe ... but for how long?

Jay's mom has been here all week playing tirelessly with WCK so that I can do stuff like run child-free errands, sit quietly and pay bills, walk on the treadmill, and read books that do not feature Elmo as the main character.

Today I was able to cash in the massage gift card that Jay and WCK got me for Mother's Day. The massage was great, of course, but I made the mistake of watching Jay's DVD of The Godfather last week. I then developed a secret fear that I'd be lying on the massage table and a gangster would burst into the room and shoot me right in the eyeball. Scoff if you will, but I'm now a very powerful stay-at-home mom, and you never know if the head of a rival stay-at-home moms' group would be out for revenge. Plus, in an absolutely horrible moment the other day, I accidentally ran over a bunny on I-29. The bunny could have powerful friends.

Fortunately, I survived the massage. I guess I can cross Eyeball Shooting on a Massage Table off my long list of fears from The Godfather. The list also includes dead horses, toll booths, and cars that might explode when I start them. Goodness knows, though, that I'm still afraid of clown dolls after watching Poltergeist in 1982, so it could take a while to get over it.

Wednesday, June 20, 2007

Rock on!

This morning, WCK, Grandma Kathy, and I went to the park to see a concert featuring Mr. Stinky Feet:


As I've mentioned before, Mr. Stinky Feet is sort of like Elvis to the under-five crowd in the Kansas City area. The kids go nuts for him. WCK went absolutely wild dancing. She was a maniac, maniac on the floor.


He opened with the powerful anthem, "Put Down the Binky", which not only totally rocked, it also carried a valuable social message as well. (Message: Binkies are totally uncool). I hope WCK was paying attention. She was probably too busy dancing or trying to escape to the playground. Maybe I need to buy the CD.

Monday, June 18, 2007

Insect repellent

I've already gotten a few mosquito bites this summer from playing with WCK out in the yard. We have an area with a bunch of trees clumped together, and this is where all of the mosquitoes hang out. WCK loves going out there, though, because she wants to "climb" the trees. The bugs never seem to get her. There's one smallish tree she can get a toe-hold on and lift herself about six inches off the ground. She feels very triumphant when she does this. "Climb top!" she says proudly. Yes.

Anyway, since my blood is complete poison now (seriously, the Coumadin is literally rat poison, and I have to swear to the Speak 'N' Spell lady at the Revlimid hotline every month that I'm not going to run out and donate blood), I wonder what happens to the mosquitoes when they bite me. Do they just drop dead? Explode? Get really tired and go home and lie down for a while?

Just something I keep wondering about.

Saturday, June 16, 2007

Doesn't this make you want to sign up?

If you're not on the marrow-donor registry yet, read this story ...

Posted on Sat, Jun. 16, 2007

Donation beats rare leukemia's odds

A 9-year-old Overland Park boy gets a life-saving gift from an Alabama man.

By ALAN BAVLEY
The Kansas City Star

Consider these odds: Two years ago, 9-year-old Weston Funk of Overland Park was diagnosed with a deadly form of leukemia affecting fewer than one child in a million.

To save his life, Weston needed a stem-cell transplant. Doctors found him a donor, Keith Bozeman of Winfield, Ala., who was a one-in-a-million perfect match.

On Friday, these two rare individuals met at Children’s Mercy Hospital, where Weston received his transplant. It was a time for handshakes, tears and gratitude.

“Thank you for doing all you did. You saved my life,” the freckle-faced boy said to the man who towered over him.

“You’re very welcome,” Bozeman said. “You’re worth it.”

Bozeman, 35, and his family left their home Thursday for the 10-hour drive to Kansas City. Friends at the 3M plant where he works pitched in $400 for gas. Grace United Methodist Church in Olathe covered the family’s other expenses.

“A small good desire can save someone’s life,” said Jignesh Dalal, Weston’s transplant physician. “This particular gentleman, he just did a little thing out of a good heart, and look what happened. He gives someone a lifespan of 70 years.”
•••
Weston’s illness seemed to come on suddenly.

He was playing baseball early one Saturday and became so tired that he benched himself and fell asleep. His mother, Regina Funk, took Weston to the doctor right away. Maybe he had mononucleosis, she thought. Maybe it was Lyme disease.

The next day, the doctor called with sobering news: Weston’s white blood cell count was abnormally high.

“I asked what did that mean, and he said in all likelihood it meant he had leukemia.”
Within hours, Weston was in intensive care.
•••
Doctors faced a challenge diagnosing and treating Weston’s leukemia.

“One, it is rare, so physicians may not have been exposed to this kind of case before,” Dalal said. He had encountered the illness only once before, while still in training. Doctors generally identify leukemia cells by looking for chemical markers.

“Unfortunately, this leukemia doesn’t have confirmatory markers,” Dalal said. “Even if you suspect it, how do you confirm it?”

But Weston’s blood had an unusually large number of white cells called monocytes. And he was pale. His spleen was enlarged. These were textbook signs of juvenile myelomonocytic leukemia.
For most common forms of leukemia, chemotherapy alone may kill enough leukemia cells to keep the disease at bay.

That wasn’t the case with Weston’s illness.

“We can’t get the leukemia cells down to that low level no matter how much chemotherapy we do,” Dalal said.

Stem-cell transplants let patients take massive chemo doses, many times the amount they usually can tolerate. The doses are so high that they destroy the patient’s bone marrow along with the cancer. Providing the blood-forming stem cells after chemotherapy replenishes the bone marrow and gives patients new blood and immune systems. Dalal calibrated Weston’s drug therapy so his new immune system attacked the leukemia cells lurking in organs that chemo could not reach. Getting the doses right is more art than science.

“I’ll be very honest with you. It just happened right,” Dalal said. “That’s why with every transplant I do my prayers.”
•••
After Weston’s diagnosis was confirmed, the search began for a donor. His best shot was someone in his immediate family. But his parents and brother, Will, were not a match.
Doctors turned to the National Marrow Donor Program. It has more than 6 million volunteers on file, but even so, about 20 percent of patients do not find a potential match in their preliminary search.

Weston was lucky.

Around the time Weston was born, Bozeman had put his name on the donor list. He had forgotten all about it. Then in September 2005, he got a phone call from the donor program. He was a possible match for an 8-year-old boy with leukemia. Tests showed Bozeman matched Weston on all 10 genetic markers that doctors use.

“It’s just amazing to me; his own family didn’t match. But a complete stranger was 10 on 10.”
Bozeman traveled to Barnes-Jewish Hospital in St. Louis to make his donation. For about four hours, he sat in a reclining chair as his blood circulated through a machine that filtered out his stem cells.

Then he waited anxiously for word.

“I was worried,” he said. “ … It would have been a big letdown if anything bad did happen.”

Months later, the donor program forwarded a letter from the Funks with no identifying information that told him the boy was doing well. At the end of last year, the program asked him whether he wanted to exchange information. Bozeman jumped at the chance.

For Weston, treatment was an ordeal. He was in and out of the hospital. He missed school; he missed his friends. Multiple rounds of chemotherapy burned out the lining of his digestive tract. He lost his copper-colored hair.

“It’s scary that something is happening to your body. But they tried to make it not so scary,” he said. “I was always doing something, but it just didn’t feel right. ”
•••
As Weston logs more and more healthy days, the odds that his leukemia will return grow smaller, Dalal said.

“Right now, I think he’s doing whatever he wants to do as a normal child,” he said.

Weston already has plans of his own for this summer: “I love roller coasters.”

Friday, June 15, 2007

Drunk with power

Today I got elected Administrative Vice President of the stay-at-home moms' group I belong to. I worked really hard to run a vicious, underhanded, mud-slinging campaign, which wasn't easy, considering I ran unopposed. Actually, everyone who ran for office ran unopposed, but we still had to hold the election, according to our rules. I guess I never did hear what the official result was, because as the meeting wound down, WCK took off for the exit screaming, "Bye bye!" and we had to go. I need to teach her to have more respect for the democratic process. Maybe after potty training.

Anyway, I'm just going to assume that I won. What does my new position mean? Mainly, if the president of the stay-at-home moms' group falls off a cliff or something, then I'll be the most powerful stay-at-home mom in the local neighborhoods west of Highway 169. Also, I have to plan the group's service projects. Of course, I'm thinking some kind of bone-marrow, blood-drive thing, but if you have any ideas of projects that would be good for moms and kids to do, let me know.

Speaking of bone marrow, my brother-in-law, who joined the National Marrow Donor Registry last fall, got a call that he might be a potential donor for someone. He has to have some more blood tests to find out. They told him he only has a 10 percent chance of matching and that it could be a couple months before they let him know. Still, I think this is really exciting news. It just goes to show that if you sign up, you really could get the call to help someone.

Anyway. Now I'm going to go sit around and feel powerful.

Wednesday, June 13, 2007

Die, Spike! Die!

I finally got the word on my M-spike today. An M-spike is a measurement of all of the bad protein being produced by the myeloma. Normal people don't have an M-spike in their blood, so you want this number to be zero. When mine was last checked in March, it was a hefty 4.9. Now it is a puny little ...

THREE! POINT! ONE!

That's right! Spike is meeeeellllllting! Meeeeeeeeeeeeeeeeeellllllting! When I was first diagnosed, it was 3.2, so this is the lowest I've ever seen it.

Of course, the only good M-spike is a dead M-spike, and we want this sucker gone, or as close to gone as it can possibly get. Even at 3.1, I have a way to go. We'll get there, though.

Monday, June 11, 2007

Almost normal

It's working, everybody. The Revlimid is working. I still don't really believe it.

I don't have the results of the M-spike test (also known as a protein electrophoresis to all of you scientific types), but I did find out my total serum protein, and it is way down. In March, my total protein was 10.6, which is really high. The normal range for total protein is 6.0 - 8.5. Today my total protein is ....

EIGHT! POINT! SIX!

I'm just .1 away from being normal.

When the myeloma was first found, my total protein was 9.2, and it just kept climbing, so my protein is even lower than it was back in October 2005. I'm supposed to find out about my M-spike either tomorrow or Wednesday. Dr. GPO says he expects a big reduction.

Tonight is my last pill of this cycle, and then I'm off again for a week. Once again, it is time for a nice vacation ...

Friday, June 08, 2007

Young and thin

This morning I was back at the Cancer Center, where they took three vials of blood for the usual tests, plus the Big Tests that will tell us if the Revlimid is working. I'm supposed to get those results on Monday, but I've had to wait up to a week in the past, so I'm not holding my breath. Right now, I've convinced myself that it's not working at all and I'm doomed. We'll see.

My CBC was really good, except, of course, for the hemoglobin, which went back down to 10.9. It's better than my all-time low of 10.0, but I don't know what I have to do to get that stupid thing up into the normal range. The nurse told me to take "frequent rest periods throughout the day." Mmm hmm. With a two-year-old. As Homer Simpson once said, "You're living in a world of make-believe! With flowers and bells and leprechauns and magic frogs with funny little hats."

My INR was once again 1.7, which Dr. GPO thinks is perfect. Once they got the results, they went to go check with him to make sure my Coumadin dose should stay the same. He came out to the waiting area just to tell me in person how perfect 1.7 is. "We don't need to get it up any higher than that," he said, "because we're just trying to prevent clots, and you're healthy, you don't smoke, you're young, and you're thin."

Right after he left, I thought, "Wait, did a medical professional just announce to the entire waiting room that I am young and thin?" That almost cancels out my feelings of doom. Almost.

Thursday, June 07, 2007

Blue Fire

First let's establish this: I'm a horrible mother because my two-year-old is still addicted to a pacifier.

OK, let's move on to the rest of the story.

Before WCK was born, I'd see older kids with pacifiers and think, "Why do the parents keep buying the pacifiers for them? Why don't they just take them away?" Ha. Naive me.

In my defense, I'm very strict about WCK only getting the pacifier at bedtime and naptime, and it has to remain in the crib at all other times. Still, she is hooked on this thing. She started taking a pacifier as a newborn when I bought her a bunch of First Years brand pacifiers. After a while, my plan was to let all of the pacifiers get worn out and cracked and gross and lost and then sort of phase them out of her life. We got down to the last pacifier and ... I chickened out.

I went to Wal-Mart to get a fresh supply, only to discover that, apparently, First Years doesn't make pacifiers anymore. I bought her a different brand, thinking she'd never know the difference. Oh, she knew. She knew. She will only suck on her solitary First Years pacifier. It's blue, and she calls it "Blue Fire". She'll inevitably lose it in the middle of the night and call out for it, and it sounds like this: "Buh-leeeeeeew Fiiiiiiiiiiiiiiiiii-rrrrrrrrrrrre! Mommy! Help! Buh-leeeeeew Fiiiiiiiii-rrrrrrre!" Then Mommy has to go search under the crib, under the clown doll, under the blankie for the Blue Fire until the matter is resolved to WCK's satisfaction.

Every day, I say to Jay, "What are we going to do if anything ever happens to Blue Fire? We're all doomed."

Doomed, I say. Until today. I found salvation on Ebay.

That's right. I found a whole mess of brand new, still-in-the-package Blue Fires on Ebay, and they are speeding toward our home as we speak. Want to make a ton of money? Sell discontinued pacifiers on Ebay. Some poor sap parent is going to be willing to pay you hundreds of dollars. (I only paid $9.99 for my big pack o' pacifiers, but I probably would have gone higher.)

Thank you, Ebay. You saved our family.

Wednesday, June 06, 2007

It must be a guy thing

I was searching for potty-training paraphernalia online, because the doctor says it's About That Time. At least that's what I think she said over all the screaming.

Anyway, I found this:





It's a "Peter Potty Flushable Toddler Urinal". You can get it at Target.com for $39.99.

Peter Potty. Heh.

Friday, June 01, 2007

Canyonero!

We just bought a new car. It's a Honda Pilot, which is an obnoxiously large SUV:



Is this day and age, is it completely irresponsible to buy a gigantic car? Yes, probably. I keep waiting for Al Gore to come over and beat us over the heads with a giant club made of all recycled materials.

Jay has a thing for giant cars. When he was growing up, his parents -- like all smart people -- tended to get smaller cars. He ended up psychologically scarred from having to ride in the back seat with his two sisters. I figure WCK will turn out the opposite way, after spending years rattling around in the back of this enormous, cavernous thing, and she'll force her family to buy a Festiva or a Volkswagen Bug. Then her kids will be scarred by the Festiva, and they'll all buy, say, school buses. The next generation won't even want to buy cars at all; they'll just drive around on teeny little scooters or just beam themselves around, like on Star Trek. By then, though, the entire earth will be under water from the melted ice caps, so it won't really matter. We might as well enjoy our giant car while we still can.

Anyway, remember when Marge Simpson bought the Canyonero? I can't get that song out of my head:

Can you name the truck with four-wheel drive
Smells like a steak and seats thirty-five.

Canyonero! Canyonero!

Well, it goes real slow with the hammer down
It's the country-fried truck endorsed by a clown!

Canyonero! (Yah!) Canyonero!

Canyonero! 12 yards long, 2 lanes wide, 65 tons of American Pride!

Canyonero! Canyonero!

Top of the line in utility sports
Unexplained fires are a matter for the courts!

Canyonero! Canyonero! (Yah!)

She blinds everybody with her super high beams
She's a squirrel crushing, deer smacking, driving machine!

Canyonero!-oh woah, Canyonero! (Yah!)
Drive Canyonero! Woah Canyonero! Woah!