Thursday, August 30, 2007

Pretty, pretty princess

Jay's sister is getting married next month. WCK's fancy dress arrived yesterday. Here it is:





Hee hee. So exciting! Now if I could only get her to wear a bow in her hair.

I haven't heard from Mayo yet about my harvest details, but I know they've started the ball rolling. Today there was a message on our machine from a transplant case manager at (cue Psycho music) THE INSURANCE COMPANY.

REE! REE! REE! REE!

Maybe I'm overreacting; I just assume any message from the insurance company is going to be evil. I'll let you know.

Tuesday, August 28, 2007

The Mayo report

We're back! It was an uneventful trip and a good visit with Dr. H, although I got a little freaked out by the fact that my M-spike was 2.2. (It was 2.1 three weeks ago) Dr. H said she wasn't the least bit worried because a) we're looking at results from two different labs, b) 2.1 and 2.2 are essentially the same number, and c) it's totally normal to hit a plateau, but that doesn't mean the M-spike won't continue to go down in the future. I guess I believe her, because she was really, really, really happy to see how I have responded to the Revlimid. In fact, I'm doing so well that she cut my dose of dexamethasone in half from 40 mg a week to 20 mg a week. WOO HOO!!! Now maybe I'll stop being a zombie every Monday. Also, my hemoglobin is up to 11.6. Hurrah!

Most of the visit was a big discussion about my stem-cell harvest. (I posted a longer, more detailed post about this a few months ago. If you missed it, you can read it here. ) To sum up: Because the drugs have knocked my myeloma down to a low level, they're going to collect my stem cells and preserve them in case I ever need to have a transplant of my own cells down the road. During a transplant, they blast you with high-dose chemo to kill off everything in your bone marrow, and then they give you back your preserved cells. It's important to do the harvest pretty soon, because they've found that the longer you're on Revlimid, the harder it can be to harvest cells. Dr. H said I could also have the full-blown transplant right away if I wanted to, but since I'm handling the drugs so well, I have the option of staying on the drugs and delaying an actual transplant -- possibly for years. I opted to delay for (hopefully) years. Dr. H agreed with me.

Anyway, someone is going to be calling me to set everything up, but it looks like the harvest will be in early November. We'll have to spend about three weeks (argh) in Rochester, but the plan is to be done by Thanksgiving. I'll also need to be off drugs for a month before the harvest, so I'll do just one more cycle after this one and then quit in October. Of course, I'll have to get back on them as soon as the harvest is done, but it'll be nice to have a vacation.

Saturday, August 25, 2007

Knock, knock

Jay and the Pee Pod and I are leaving for Mayo tomorrow morning. I have a blood draw and pod drop-off on Monday morning, and then my appointment with Dr. H is at 3 p.m. We'll drive all night to get home. By Tuesday I should have an update for you on what she said. WCK is staying here with Grandma and Grandpa, and I'm sure they're going to have a ball. I always really miss her, though. Plus, I have to miss my book club meeting and a chance to take WCK swimming at her friend Lilly's house. Stupid disease.

Other than that, not much has been going on. Monday, WCK and I went to a toddler exercise class called Stretch and Grow. We'd been once before, and WCK really enjoyed it and talked nonstop all month about "ex-size class". This time, she did great while we were following along with the teacher's exercises, but when it came time for all of the kids to gather together for an obstacle course, another game where we bounced on some giant exercise balls, and then an activity with a parachute, she got really overwhelmed and made a dramatic exit from the gym. You know the part in The Wizard of Oz where the Cowardly Lion runs out of the wizard's throne room and throws himself out of a window? It was EXACTLY like that. Well, except for the window-throwing. She sort of patted on the door and said, "Go home!" Close enough.

The rest of the week was better. We had a music class on Tuesday, a moms-and-kids brunch on Thursday, and on Friday we had arts and crafts AND it was cool enough to play outside at a park, which was a huge deal. It's been so hot around here that we spend most afternoons trapped inside with the Fisher Price Little People. WCK loves the Little People. She has the Little People house, which came with a family identical to our own -- Mommy, Daddy, Baby, Kitty. They have all kinds of adventures. For example, WCK will have each member of the family go to the little refrigerator. Daddy gets coffee, Mommy gets bottled water, and Baby gets chocolate milk. Very realistic. Then Baby takes a nap in the crib, Daddy sits in front of the little computer, and Mommy ... always sits on the potty. What?!?! Must be all of the bottled water I've been drinking.

We also play a game with the house called "Knock Knock", in which all of the other Little People (the ones from the bus, the plane and the Noah's ark), as well as any other little toy in the vicinity (plastic zoo animals, little rubber bugs, even a rock she found outside) will knock on the front door. "Knock, knock," I will say, making the Little Person bang his/her head against the front door. "It's me. Carlos*. Can I come in?" WCK will then answer the door with a tiny Cinderella figure. Cinderella always answers the door. Why? Is she the nanny/maid the Little Family had to hire because Mommy is always on the potty? I do not know.

My point, and I do have one, is that I'm glad it cooled down, even if it was just for one day. After weeks of "Knock, Knock", going to the park was very exciting.

Anyway, wish us luck. I'll update soon.

* He's the guy who drives the Little People Bus. But if you live with anyone under five, you already know this.

Wednesday, August 22, 2007

What my child did yesterday:

1. Went pee in the potty.

2. Allowed me to brush her teeth without also acting like I was, in fact, trying to murder her.

3. Answered the question, "What does Judy Garland say?" with "Ding, ding! Trolley!"

Overall, a good day.

Sunday, August 19, 2007

How cool is this?

The guys from This is Spinal Tap -- Harry Shearer, Christopher Guest, and Michael McKean -- are holding a concert to benefit the International Myeloma Foundation. Woo! Cool Hollywood stars care about me!



They're all cool for a wide variety of reasons, but here are the ones that come immediately to mind. They were guest stars on The Simpsons:



Harry Shearer is the voice of several Simpsons characters, including Mr. Burns and Smithers:




And Flanders:



Christopher Guest played the six-fingered man in The Princess Bride:



And Michael McKean was the evil neighbor in The Brady Bunch Movie. I couldn't find a picture of him from that, but here are the kids in their "Keep on Groovin'" costumes, just because it makes me laugh. Then again, I've been up since 5 a.m. because of the dumb dex, so pretty much anything makes me laugh right now.



Anyway, here is the official press release from the IMF:

Christopher Guest, Michael McKean, and Harry Shearer, (Spinal Tap, The Folksmen), announced today that they will headline Concert for a Cause, August 27, Avalon Hollywood, 8 p.m. to raise funds to battle multiple myeloma, with proceeds benefiting the International Myeloma Foundation (IMF).

Michael McKean first became involved with the IMF when a friend and colleague, Lee Grayson, was battling multiple myeloma. Since then, he has supported the IMF in Lee’s honor, by his celebrity appearance on the televised game show "Celebrity Jeopardy" -- playing, winning and donating the proceeds he won to the IMF."

Susie Novis, President of the IMF, says, "One of the International Myeloma Foundation's main goals is to reach out to myeloma patients everywhere, to let them know that they are not alone, that the IMF is here to help. Michael McKean’s continuing support and the additional support from Christopher Guest and Harry Shearer, will help raise awareness, and will let more people who have been diagnosed know that there is a place to go for help, information and support."

This summer, Spinal Tap, (aka - Christopher Guest, Michael McKean and Harry Shearer) did their part to raise awareness of Global Warming and to encourage people and governments to go green at the Live Earth concert in London. Once they understood that this event was against Global Warming, rather than for it, the band was thrilled to be a part of this worldwide event. They also appeared as The Folksmen in the recent film titled "A Mighty Wind," directed by Christopher Guest for which Guest, McKean and Eugene Levy won a Grammy Award for the title track.

Event sponsors include Celgene Corporation and Millennium Pharmaceuticals, 97.1 Free FM, Hendrix Electric Vodka, Los Angeles Confidential Magazine, Avalon Hollywood, and guest DJ Timbo.

For more information and to purchase tickets go to http://www.wantickets.com/ or call 866-926-8499.

For sponsorship opportunities, contact the IMF at 800-452-2873, ext. 222.

Thursday, August 16, 2007

Elmo has betrayed us

I've long suspected this, but now it is official: Elmo controls my life.

WCK and I are avid Sesame Street viewers. This week, Sesame Street started a new season, which I had been looking forward to for months. There are only 26 new episodes of Sesame created each year -- one for each letter of the alphabet -- which means that after watching every single day, five days a week, we have now seen every episode from last season approximately 10 times each. I'm going to estimate that they make about half as many Elmo's World segments, because I know deep in my soul that if I see the one about the sky one more time, I'm going to throw myself off a bridge. Yes, Mr. Noodle can't fly a kite! WE GET IT, ELMO!! WE GET IT!!

But despite the bridge-flinging, I absolutely adore Sesame Street. I grew up with it myself. When I returned to it after a 25-ish-year absence, I noticed the big difference is that every episode would stick to a very strict, predictable formula. Cookie Monster introduces the Letter of the Day at the same time every day. Bert and Ernie always appear at the same point in the show. Then Grover. Then there's that, "Come on, get up, it's time to play" song. Then The Count. And then, of course, at 9:35, Elmo's World begins. WCK, who is absolutely Rain-Man-esque in her need for routines really appreciated this. Everyone was happy.

Then Season 38 began on Monday.

The opening skit featured Tina Fey as a pirate. Very funny:



And then. THEY CHANGED THE FORMAT. WCK was beside herself when Cookie Monster failed to appear at 9:20. Sesame Street seems to have bumped itself up a level. There's no more Letter of the Day; there's a Word of the Day. The emphasis is now on words and reading books instead of basic letters and numbers. We had a difficult few days, but I could semi-relax knowing that Elmo would always be there for us.

Yeah. Yesterday THERE WAS NO ELMO'S WORLD.

WCK and I stared at the screen in numb shock, our jaws on the floor. She cried out in anguish: "Find Elmo! Fiiiiiiiiiiiiiiiiiiiind Elmo!!!"

"I'm trying!" I cried, fumbling with the remote in panic. I thought maybe if I pushed the buttons enough, the TiVo would magically find Elmo and bring him back to us.

I tried to bargain with God: "I'll even watch the one about the sky! I take back all the things I said about Mr. Noodle! I wished him well! I wished him well!"

It didn't matter. Nothing was bringing Elmo back. Now I'm shaken. We live in an unpredictable world, but there are a few things I know for sure: Everyone has to be born, and everyone has to die. The sun will rise every morning. And every weekday at 9:35, Elmo will appear.

Now we never know if Elmo will be there or not. Will we ever learn to trust again? I don't know.

Saturday, August 11, 2007

The new numbers are here! The new numbers are here!

I got a few of my results over the phone yesterday. Can you guess what my M-spike is?

Ya ta ta ta ...

2.1!! YAY!

Let's review:

All-time high (in March): 4.9
June (after round 2 of Revlimid): 3.1
July (after round 3): 2.7
August (after round 4): 2.1

Woo hoo! It's now more of an M-mound, really. An M-bump. My total protein is down to 7.3, which is well within the normal range. I'll get all of the other results in the mail soon. I'll get all of this checked again in just over two weeks at Mayo on the 27th, except then I'll get the results back the same day. It will be interesting to see how much it goes down in such a short time. I'll wonder if I'll be into the ones! Right now I'm on Revlimid Vacation; round five starts Tuesday.

In other news, my mom's in town for the weekend and she loooooooves babysitting, so Jay and I were able to go out for Chinese food and then we went to see ...



I know die-hard Simpsons fans have been complaining, but I LOVED it! You don't get much more die-hard than I am. I've been in love with The Simpsons since I was 14 years old. It was just exciting to be out on a date and in a movie theater, too.

Thursday, August 09, 2007

Oh, joy! Rapture!

As most of you know, I have been obsessed with The Wizard of Oz my entire life. People will ask me, "When did you start collecting Oz stuff?" or "When did you first see the movie?" and I have to say I honestly don't know, because I don't have a single memory of life before my Oz obsession. In fact, one of my earliest memories involves waiting for the annual airing of The Wizard of Oz on TV. Someday I will explain to WCK that this was back before TiVo, before DVDs, before -- yes -- VCRs. The Wizard of Oz was on TV once a year and if you missed it, if you missed any part of it, that was it until next year. For several years in the late '70s, I harbored an enormous fear that the TV network would try to pull a fast one on me and air the show before it was scheduled to begin. I would sit in front of the TV for hours, guarding it, just in case. You never know when a TV network is going to try to slip one by you. I have this memory of sitting on the living room floor vigilantly watching Family Feud for any hints of an early Oz showing while my family ate dinner without me in the kitchen.

If we didn't have a TiVo or numerous copies of the movie on DVD, I would probably still do this today.

Anyway, you can imagine my dismay when, a few months ago, WCK declared The Wizard of Oz to be "scary" and didn't want anything to do with it. I'd given her a picture book with buttons on the side that play all of the songs from the movie. This book horrified her, and she immediately demanded that I put it away in the closet, and then she'd seek reassurance about 10 times a day every day: "Wiz Oz scary," she'd say. "Away? Closet?"

I'd tell her it was tucked away in the closet, while trying not to cry. How could my child not like The Wizard of Oz? How?

Then, this week, as is WCK's style, she suddenly changed her mind. "Wiz Oz," she said. "Like it!" She asked me to take the book out of the closet, and she now carries it with her everywhere she goes and plays the music nonstop. She knows the names of all the characters. She dances to the soundtrack with gleeful abandon, and the other night I had to wrestle her to the floor at bedtime to get the little Ruby Slippers off her feet. I've been trying to teach her to say, "I'll get you my pretty, and your little dog, too!" It comes out, "Doggie, too!" but she's working on it. She's a little unsure about the Wizard's big green head, but she's completly comfortable with the witch.

Anyway. THIS HAS TO BE THE GREATEST THING TO EVER HAPPEN IN MY WHOLE ENTIRE LIFE. When I told Jay we'd spent part of the afternoon dancing to the Oz soundtrack -- as well as "Clang, Clang, Clang Went the Trolley" for a little variety -- while wearing Ruby Slippers, he said, "Everything is going according to your plan, isn't it?"

Yes, yes it is. I'd better enjoy it, because tomorrow she could change her mind again and throw the Ruby Slippers in the toilet. I wouldn't put it past her.

Monday, August 06, 2007

Darn you, big salad!

I had my four-week checkup at the Cancer Center this morning. My CBC is fine, except for the stupid hemoglobin, of course. I give up! Do what you want, hemoglobin! My INR went way down, to 1.2, which is bad. It's supposed to be at least 1.5, so I have to increase my Coumadin to 5 mg a day. I blame the big salad I had over the weekend, but Dr. GPO says sunlight can affect your INR (Really? Who knew?) and everybody's INR goes way down in the summer. I had no idea. Hmm. I should get the rest of the results back by the end of the week.

Only three weeks until we go to Mayo. Then maybe I can get some answers to all of the burning questions: When is the stem-cell harvest going to be? Do I need an actual transplant? Will I ever get off these drugs? Can I at least stop taking the Evil Steroids? Stay tuned ...

Sunday, August 05, 2007

Maddening myeloma article

This was in the Kansas City Star this morning. It makes me crazy. As much as I want to see Sicko, I don't know if I'd be able to make it through it, knowing what I already had to go through just to get my Revlimid approved by the insurance company. I know what I had to deal with was much, much easier than what other people have to face, and, man, it was still so stressful. It took weeks of fighting and a nasty letter from my doctor before the insurance company said, okay, we'll do you a big favor and"let" you have this lifesaving drug. Everyone should get mad about stuff like this.



Posted on Sat, Aug. 04, 2007
Lokeman: Fighting for health care, fighting for her life

It took two viewings before Julia Slaven could laugh with others in theaters showing Michael Moore’s latest film.

“Sicko” opens with a guy who, for lack of affordable health care, stitches up his own gaping wound. According to Moore, you’re better off getting sick in Cuba, France and Great Britain than in the USA.

Some people in Moore’s film died while their appeals on denied claims were pending. Moore’s film featured a St. Joseph Medical Center employee whose husband had cancer and died while the family appealed an insurance denial.

Julia Slaven of Kansas City watched “Sicko” through a been-there-done-that lens. A nurse at University of Kansas Medical Center, Slaven has multiple myeloma, an aggressive form of cancer. She’s not your typical cancer survivor: She ought to have the letter “S” sewn on her shirts and walk around wearing a cape.

Earlier this year, her health provider, Coventry Health Care of Kansas, denied as not “evidence-based” a second round of autologous stem-cell treatments at KU Medical Center. Coventry claimed the transplant procedure was “not supported by medical literature.” She appealed.
As she waited, Slaven, family and friends held a one-day protest in March on Ward Parkway near Coventry’s Kansas City headquarters.

Supportive letters were faxed to Coventry. Motorists honked in support. TV crews from KMBC and Fox-4 News interviewed her. By the end of the day, Coventry had contacted Slaven to explain that the denial had been overturned. Just like that.

The stories that Moore tells are stories that people like Slaven live.

Slaven couldn’t understand how her insurer had approved the workup to this second round of treatment, denied it as experimental and within hours of a protest changed its mind. Variations of this theme are found in “Sicko.”

“First time I saw the movie, it made me mad. It stirred things up,” Slaven said. “The second time, I thought it was sarcastic and funny. You do have to have some humor about this or else you would go crazy.”

While fighting cancer, Slaven kept her sense of humor but lost her hair. She lost her appetite, but not her life.

“It’s heartbreaking what happened to that woman and her husband at St. Joe,” Slaven said. “But there are a lot of stories like that out there.”

Had Coventry not come through, the Slavens would have had to pay out $250,000 on their own. The family already pays more than $14,000 in premiums annually. And these were Julia’s stem cells, not the controversial embryonic stem cells.

“I have stem cells saved from the year before,” Slaven said. What happened to her was like putting money in the vault and having the bank charge you $250,000 to claim it.

Coventry claims it overturned its denial based on a review of her case by a panel of independent physicians called upon to consider her appeal.

A Coventry representative on Friday identified the physicians who gave the green light as A. Robert Thiessen, Keith Hansen and Matthew Sacks. The original denial was made by Dr. William R. Rooney, medical director of Coventry.

Last March, the second round of stem-cell treatments began.

“I open the newspaper first thing to the obituaries,” Slaven said. “The other day I read one about a woman who died of multiple myeloma. The way I feel right now is I will live for a long time.”

Julia Slaven turns 55 on Tuesday. Michael Moore will miss her blowing out the candles surrounded by her loving family. Despite her happiness, she worries about other cancer patients who also see life through a been-there-done-that lens and may run out of time while waiting for the coverage they have paid for and been denied. You ought to worry, too.

Rhonda Chriss Lokeman is a nationally syndicated columnist for Creators Syndicate.

Saturday, August 04, 2007

Treasure Boxes

I finally finished Harry Potter, so now I can rejoin the real world. It's been a rough re-adjustment. I'm feeling a big letdown. What am I supposed to do with my life now? Re-read all of the books, I guess!

I've heard from a couple of people who are looking for free bone-marrow donation coupons. Unfortunately, I only had two of them. They were snapped up right away (thanks again, Gina and Morgan!), so I'm all out. If I get any more though, I will let you all know immediately.

Speaking of donating stuff: Remember I mentioned a service project my stay-at-home-moms' group was working on? We are holding a "Treasure Box" drive for Children's Mercy Hospital here in Kansas City. We're collecting small, trinket-type toys worth about $1 each (Hot Wheels cars, little stuffed animals, etc., etc) that children will get when they have to be outpatients at the hospital. You know: Each kid gets to pick a toy out of the box at the end of their hospital visit. Hopefully it'll be something that can help cheer them up. The hospital has about 325,000 outpatients every year, so they're in desperate need of toys. So ... if you'd like to help us out and donate some toys or make a small donation so that we can buy more toys, let me know. I'm hoping to get all of the donations collected by Aug. 17. So far, we are doing well and have gotten several donations from people who I know read this blog. Thank you!!