Monday, April 30, 2007

The highs, the lows, the bloody nose

Oh, where to begin?

First of all, the dexamethasone experience wasn't nearly as bad as I'd feared. Ever since I was diagnosed, I've had a huge, huge fear of the dex. I've heard nothing but horrible things about it. Granted, most of the people saying these horrible things are taking a much higher dose than I am, and they are a good 20 to 30 years older, but I didn't really take that into consideration. Besides, even Dr. GPO told me that 40 mg of dex was going to make me "wired", that I'd be able to set a "world record on the treadmill", and that if I managed to sleep four hours on the night that I took it, I'd be a "world-champion sleeper."

Yeah, that really scared me. I don't want anything to mess around with my sleep. I'm very serious about my sleep -- especially after having a newborn and going about three or four straight months without any. I know what lack of sleep can do to me. I mean, there was the time I started crying over a Celine Dion performance on Oprah. Why was I even watching Celine Dion on Oprah in the first place? Why?? Lack of sleep, people! It makes you do awful, awful things.

Anyway. On Saturday, I was so scared of being up all night with the dex that I cut all caffeine out of my day, and ... the only really bad side effect I had was one really awful caffeine-withdrawal headache. As soon as I had a Diet Coke, everything was fine. I still managed to get in eight hours of sleep. Does this make me the Double World Champion Sleeper? That's a title I don't mind holding.

Then on Sunday, just as I was gloating over my big dex victory, I got a bloody nose. I called and left a message for Revlimid Nurse first thing this morning, worried it was caused by the Coumadin. (That's the blood thinner I'm on.) While I was waiting for her to call back later in the afternoon, I got two more bloody noses, and I started to feel more and more tired. The nurse called back and said I needed to come in right away for an INR test -- that's the test that tells you how the Coumadin is affecting your blood. If your blood's too thin, you could be in big trouble. I was home alone with WCB, who now has my cold, and I had to wake her up from her nap, throw her into the car, and take her poor, sniffly little nose into the Cancer Center with me. Bless her, she was extremely well-behaved and charmed all of the lab techs. I brought along her bunny puppet and made it climb up and down a fake tree in the waiting room about 200 times.

After all of that, my INR came back at 1.3, which is perfectly fine. They also ran a complete blood count on me, and Dr. GPO himself came out to inspect me, talk everything over with me, and make sure I wasn't dying. I'm not. They couldn't find any myeloma/Revlimid/Coumidin-related explanation for the nosebleeds. Most likely, they were just from blowing my nose 100 times a day since getting my cold on Thursday. Nice.

Dr. GPO told me my blood counts were just fine, but my hemoglobin is all the way down to 10, either because of the myeloma, the Revlimid, or both. Whoa. That's why I'm so tired. "You're not what you used to be," said Dr. GPO. Yeah, I know.

I need to go to bed now. I'm the Double World Champion Sleeper, after all.

Saturday, April 28, 2007

Four score and seven years ago

Today is Steroid Day. My dad called to see how I was feeling. I was in the basement walking on the treadmill, so Jay talked to him.

ME: What did you tell him?
JAY: Oh, just that you were outside running around naked claiming to be Abraham Lincoln.

Ha HA!!

Actually, I feel OK. I ended up coming down with a bad cold on Thursday: A "can't breathe, talking like Marge Simpson, running the humidifier all night, waking up every hour" cold. Now I don't know if all of all of my cruddy feelings came from the Revlimid or from the cold coming on. I was wiped out all day Friday but I'm pretty sure it was 100 percent because of the cold. This morning I got up at 6 a.m. and took a big pile of steroid pills. Dexamethasone only comes in 4 mg tablets. I need to take 40 mg, which means I take TEN pills at once.

That's a whole lot of pills. It's like there's a pharmacy in my mouth, and everyone's invited.

I'd heard horror stories about the dex, like that it makes you "wired" and crazy, but I'm actually feeling all right now. Maybe I was so tired that it just made me feel "normal." Maybe it takes a long time to kick in. Who knows? But for right now I'm doing OK.

I finally got to watch Lost on the TiVo. It's Jin's baby? Yeah, right.

Thursday, April 26, 2007

Groggy

OK, I lied. Just a few hours after I posted that last post -- my "Look, Ma! No side effects!" post -- I started feeling really, really groggy. By evening, all I could do was lie under a blanket and watch American Idol. I realize that's not too different from my usual routine, but get this: I went to bed without watching Lost, and I DIDN'T EVEN CARE!

(Gasp from the audience)

Don't tell me what happens. It's still in the TiVo for later.

I'm still pretty tired today, but I'll make it. I hope.

In other news, I got a cool medical ID bracelet that lists all of my medications. I'm just paranoid about being in a horrible wreck and bleeding to death because nobody knows I'm on Coumadin. It's from a company called Lauren's Hope. They make medical ID bracelets that aren't nearly as ugly as the average medical ID bracelet. Here's what mine looks like:




I found the company on the Internet, and then found out that it's only a few miles from our house. Today I went in to get my bracelet re-sized, and everyone was very nice to me. It's not a store; more like an office filled with a bunch of cheerful ladies stringing beads. Anyway, if you are in need of a medical bracelet, that's who I recommend.


Time to go lie around for a while.

Wednesday, April 25, 2007

One down ...

I took the first Revlimid last night. I didn't turn into the Incredible Hulk, and no steam shot out of my ears. In fact, I can't really tell I took anything. I hope this continues.

I got the OK from Dr. GPO to do the steroid on the weekends; if it ends up making me wacky, I don't want to be home alone with WCB.

Anyhoo .... so far, so good!

Tuesday, April 24, 2007

Revlimid happy face

Here it is -- my full 21-day supply:




The pill bottle is supposed to be a jaunty top hat.

Let the butt-kicking begin.

Monday, April 23, 2007

Here it comes to save the day ...

The Revlimid is on its way.

The pharmacy just called me. The Revlimid is shipping out and should be at my door tomorrow by noon. It'll be a Speedy Delivery:



The pharmacy also has a Revlimid Nurse (Revlimid Nurse II), who says she will be calling me every week to make sure I'm OK. That's nice of them. "You sound ... really young," said Revlimid Nurse II. Ha. Yes. Well, hopefully these drugs will help me get old.

Moving! Forward!

Today WCB and I were at the Hobby Lobby picking up some supplies for her upcoming birthday party. I stopped the cart for a minute to browse. WCB got a scowl on her face and told me, "Move! Forward!"

I'd never laughed so hard in a Hobby Lobby in all my life.

When we got home, I found out -- at least according to the information I got today -- that we are indeed moving forward. The Revlimid Nurse called to tell me that the insurance company caved in and is going to let me have the medication after all.

WOOOOO HOOOOO!!!!!

I think I confused everyone (including myself) when I posted that we were going to have great coverage for the medication, and then a week later, I posted that the insurance wasn't going to cover it. A lot of people have been asking me, "How could the insurance company just change their mind?" The nurse explained that the cost was never an issue. They were always going to let me have the $20 co-pay. They just wanted me to have some kind of other chemotherapy before they'd give me the Revlimid. Even though most doctors (including all of the myeloma specialists at Mayo) consider Revlimid the best up-front treatment for myeloma, it's technically only approved by the FDA if you've had at least one previous treatment. Fortunately, Dr. GPO got the insurance people straightened out. I know I've been frustrated over the past few weeks, but I have to say that Revlimid Nurse and Dr. GPO really, really, really went way, way, way out of their way to fight the insurance people and make sure I got this drug. And I appreciate it.

Anyway. I had to call the drug company again and reassure the Speak 'N Spell lady that I'm not pregnant. The Revlimid Nurse said the pharmacy might ship the medicine as early as today. I might get it tomorrow. We'll see.

Sunday, April 22, 2007

A sign that I watch too much PBS

The other night I had a nightmare I was being stalked by Mr. Aber from Mister Rogers' Neighborhood:




True, there are scarier people I could be stalked by, such as an insurance company executive, but it was still unsettling.

Friday, April 20, 2007

Roller coasters make me throw up

Heck, just watching a merry-go-round slowly turn aggravates my motion sickness, so you can imagine what roller coasters do to me.

Remember last Friday, when I was reassured that we had really awesome insurance coverage for everything? Now the roller coaster screams down a hill: Late yesterday afternoon, I got a message on the machine from the Revlimid Nurse saying that the insurance company now refuses to authorize the Revlimid. Dr. GPO immediately wrote them a very stern letter saying that I absolutely need it, and I need it now. It got faxed out late yesterday. I haven't read the letter, but the nurse described it as "flaming", and she said that I'd know how completely serious he was if I read it. I really don't want to read it, because I'm sure it says something really serious about how I have two seconds to live unless I get the drug. I guess that's true (OK, maybe it's more like three seconds to live), but I still don't want to see it in print.

I called early this morning and talked to a different nurse (Revlimid Nurse is out today), who was pretty helpful. She told me that when a doctor intervenes like this, then the insurance company HAS to come back with some kind of response. We're supposed to know on Monday or Tuesday what they say about the letter. I asked if we needed to get Dr. H involved; she said that if the answer is still no next week, then yes. Dr. H has prescribed Revlimid a million times, so I know that she'll be able to help out or have some kind of plan if we still get denied. I guess I'm satisfied with this plan for now, although I wonder why it took the insurance company three weeks to say no. I have no idea.

But now it's going to be a nice weekend, so I'm going to try to crawl off the roller coaster, wobble my way over to a non-moving bench, and have somebody bring me a cup of Sprite so I can recover.

Thursday, April 19, 2007

Get Happy

Have I told you how in love I am with YouTube? I was able to find "Get Happy" from the musical Summer Stock. Not counting anything from The Wizard of Oz, this is my favorite Judy Garland perfomance EVER.

Wednesday, April 18, 2007

YES!! YES!! YES!!

Sanjaya's reign of terror is over. I've never been so happy.

In other news: I still don't have the Revlimid. Last Friday, I was told I'd have it by Tuesday (yesterday), but ... nothing. The nurse called me tonight and said that everything was still processing and she'd call me back in the morning. I'll let you know.

Monday, April 16, 2007

Yes, I'm bugging you about your marrow again

A few days ago, I told you how you could sign up to be a bone marrow donor online for free. (Check out that post here in case you missed it). I've since heard from my friend Lisa D., who was able to use the code successfully to sign up, so it must still be good! Thank you for signing up, Lisa!!

My friend Brooke (the one who found the code in the first place) also told me today that she got her testing kit. All she had to do was swab the inside of her mouth. That's got to be the easiest medical test ever. I mean, you could do it while lying around watching American Idol.

I once again invite everyone to at least go check out http://www.marrow.org and learn more about becoming a donor. If you decide to sign up, enter Promotional Code G022007 and it will be FREE.

Sunday, April 15, 2007

No more karate chops

OK, I admit I've been a little bit stressed out the past couple weeks with all of the doctor stuff. On top of everything else, there was a scary time late last week when the special Revlimid pharmacy called and told me our insurance wasn't going to cover anything. Remember in all of the Muppet movies when Miss Piggy would freak out and start karate-chopping everyone? I really wanted to do that.




Fortunately, it was just a minor miscommunication glitch, and everything is OK now. The Revlimid Nurse and Dr. GPO really went out of their way to get everything all cleared up and to get the process moving again. Now the insurance people say we only have to pay a $20 co-pay every month. We are really, really lucky: According to our insurance company's web site, Revlimid costs around $6,700 ... A MONTH! That's A MONTH, people! And since you take a week off the drug in each monthly cycle of pills, you're only getting 21 pills for your $6,700. Good god.

Anyway. I met with the nurse practitioner last Friday, and she was able to answer most of my questions, plus I got a free Kansas City Cancer Center tote bag just for coming in. Really.

I still don't know all of the details about when I need to go in for my blood tests and stuff, but she said to call when I actually get the medicine and we'll figure everything out from there. I might get it as early as Tuesday. I guess we'll see.

I realized this blog has been about nothing but cancer stuff for a while now, but I still do have a regular life. My whole family was here for Easter. On Good Friday, we took WCB and her cousin (WCB II) to have their pictures taken. The photo studio was having a special event where the kids could pose with real baby animals -- chicks, ducks, bunnies. It seemed like such a good idea on paper; it quickly turned into a terrible idea when WCB began squeezing a baby chick with all her might. Remember how Superman squeezed a lump of coal into a diamond? It was like that. That chick is going to be in therapy (both physical and emotional) for a while.

We'd planned to take WCBs I and II to the Kansas City Easter Parade that Saturday, but it was freezing outside -- like, literally freezing. All of the plants are dead. So my mom watched the babies while Jay, my dad, and our brother-in-law went to a Royals game (cold weather doesn't matter if sports are involved). My sister and I went to -- heh -- Blades of Glory and then wandered around a fabric store. It doesn't get much better than that. On Easter Sunday, Jay and our brother-in-law cooked a ham on the grill. It was really, really good. Let me know if you want the recipe.

This weekend we went to Omaha. Our friends Elizabeth and Spencer have a new baby who was being baptized, and our other good friends DeAnna and Karyn were the godmothers. It was good to see everyone. We now all have six kids between us. Unfortunately, WCB started acting up in church and we had to take her out and spent most of the baptism running around outside. I hear it was good, though.

I'm sure I'll update again soon.

Thursday, April 12, 2007

Tribute to Mister Rogers

I'm experimenting with posting videos from YouTube. Check out this Mr. Rogers tribute and try not to cry.

Tuesday, April 10, 2007

Mayo = Awesomeness

Yet another phone call update:

Because I was getting so frustrated with the cancer center here, I called the Mayo Clinic with my questions. WOW. I was instantly -- like, within a minute -- put on the phone with a nurse. I could tell she knew a lot about Revlimid, and she answered all of the questions I had. She agreed with me that I need to have blood tests at least every two weeks instead of once a month. Unfortunately, she wasn't able to answer a lot of questions about the Coumadin, so that remains the one thing I'm anxious about. I'll be sure to ask a lot about that when I meet with the nurse practitioner here. I'm feeling a little bit better now.

Whew.

Someday soon this blog will go back to being all about silly sock puppets, I swear.

Phone phrustrations

All right. Here is an update on where I stand with the Revlimid:

I got a call from the Revlimid nurse late Friday afternoon so she could tell me about the next step in the process. Apparently it is not enough that I signed 2,451 forms swearing that I wasn't pregnant and provided the drug company with an actual negative pregnancy test. No. Now I had to call a special hot line at the drug company and reassure them once again via touch-tone phone that I'm aware of the risk of birth defects. I have to do this every month in order to renew my prescription.

If someone is dumb enough to not heed all of the warnings up until this point, do you think a call to a computerized hot line is going to help? Really?

But it's required, so I called the hot line and answered questions for a computerized voice. I think the least the drug company could have done was record the hot line messages using a real human. At least a human could possibly add a shade of compassion to her voice, maybe a hint of "Yeah, it really sucks that you have to take this drug and that I have to ask you all of these embarrassing questions." Instead, I got to talk to something that sounded like a female Speak 'N Spell from the '70s. "Do ... you ... have ... a-ny ... rea-son ... to ... be-lieve ... you ... might ... be ... preg-nant? Press ... one ... for ... yes (long pause) two ... for ... no."

It wasn't the least bit soul-crushing at all.

Anyway, back while I was on the phone with the Revlimid nurse, I told her I still had a lot of questions about the drugs and about my blood-test schedule. She said she'd set me up for a meeting with a nurse practitioner to go over everything, and that once I called the hot line, she'd fax out a bunch more stuff, and the Revlimid would get Fed-Exed to me.

Monday I got a call from a different nurse, telling me I need to come in for a blood test on May 1.

I asked if she was sure, because my understanding is that I'd need to come in once a week or so until I'm adjusted to the drugs. She had no idea. She transferred me to the Revlimid nurse. She had no idea. I said, "Didn't I sign a bunch of forms promising to come in once a week?" "Oh," she said. "You did?" Sigh. I'm waiting for a call back on all of that. I think I'm just going to call Dr. H at Mayo and ask her all of these questions. I think they're overworked at the KC Cancer Center. I meet with the nurse practitioner on Friday the 13th.

I think I need to go eat some jellybeans. Lots of jellybeans.

Monday, April 09, 2007

The secret code

I've posted here before about how you can become a bone-marrow donor. Marrow donors can help provide life-saving treatment to people with blood cancers, including myeloma. I know that in a lot of cases, becoming a donor can be a hassle because you either a) have to pay the $52 fee to sign up online or b) have to seek out a place you can sign up in person. However, my friend Brooke just let me know that she discovered a promotional code that will allow you to sign up online FOR FREE. That's right: Easy and free. It doesn't get much better than that.

Here's what you do: Go to http://www.marrow.org and fill out the online registration form. There should be a field for the promotional code. Enter G022007, and your fee should be $0.

We're not sure when this will expire, but Brooke was able to get it to work on Sunday. If you try it and it works out for you, let me know!

I do have some more news -- or rather, long stories about the frustrating lack of news -- about the Revlimid, but I'll have to post that later. Hope you all had a happy Easter.

Friday, April 06, 2007

You say it's your birthday, na nananana na na

It's my birthday, too, yeah.

Today I'm the big 3 - 2. Last year, my goal for age 31 was to have no health drama all year. I missed that by just a few weeks. Thanks a lot, universe! Now I declare this is going to be the Year of The Great Cancer Butt-Kicking. Here's what I'm going to do: Every time I go to the cancer center, they print out a form that goes in a plastic folder that I have to carry around and give to the lab people, nurses, etc. The top of the form lists all of my information: Name, birth date, insurance info, etc. It also says in big, black letters: "MYELOMA w/o remission."

This year, I'm getting rid of that stupid "w/o."

That said, I still haven't heard back about how everything is going with the Revlimid. I was able to have my blood test on Wednesday, and I picked up my other prescriptions from Wal-Mart yesterday, so I'm done with my part. The Wal-Mart pharmacist: "Looks like he has you on a huge dose of this steroid once a week. What's up with THAT?" Nice. Actually, compared with the "old-fashioned" way of treating myeloma, I'm on a low dose of the steroid. I'm on 40 mg one day a week, while a lot of people are on 40 mg a day every day for four days in a row, then four days off, then four days back on, and so on. A new study released just a couple of days ago showed that the low-dose regimen is the best way to treat newly diagnosed patients. I'm glad Dr. H is way ahead of things.

Anyway, back to the waiting game. And hopefully some cake.

Tuesday, April 03, 2007

Holding pattern

Everything is still on hold, because I couldn't get my blood test done today. Yesterday, the nurse told me I could come in any time I wanted. It's a long story, but I didn't get to the cancer center until 4:15 p.m., and then I found out that the lab shuts down at 4 p.m. What? Isn't every other business in the world open until at least 5 p.m.? You can get a McNugget 24 hours a day, but the life-saving cancer lab stops at 4 p.m.

Anyway, the front desk lady was still there, she was very nice to me, and we got everything squared away for me to come in tomorrow morning. Maybe I should have used my new hairdo to my advantage and tried to convince them that I'm Florence Henderson so they'd re-open the lab for me. You can't turn away Mrs. Brady.

Monday, April 02, 2007

This new-fangled Internet

I got another call late this afternoon from the Revlimid nurse. She's an awfully sweet lady, and I get the feeling that she's going to become my best friend down at the cancer center with all of these phone calls. She called over the weekend to let me know that my steroid pills and my Coumadin (that's a blood thinner I'll take to prevent blood clots from the other medications) had already been called in to the pharmacy. Get this: The Revlimid nurse was a Thalidomide baby. She somehow managed to escape the birth defects, and she's totally fine. You'd never know. I was stunned. She did tell us that she had a twin who didn't make it, and they've always suspected the Thalidomide, but they never knew for sure. Interesting.

Anyway, when I was in on Friday, she forgot to get blood drawn for the pregnancy test that's required every month by the drug company. ("I'm not used to dealing with someone so young," said the Revlimid nurse. Ha! Nobody is!) I have to go in tomorrow and get that done. She hasn't finished the insurance stuff yet, but I told her that Jay and I checked it online, and the web site said we should have a small co-pay. ("That would be great!" said the Revlimid nurse. "I'm not used to dealing with people who know how to use the Internet.") Ha. Now I'm picturing her dealing exclusively with people as old as Mr. Burns from The Simpsons. "Smithers, send this over the faxtrola posthaste."

In other news, I'm back on my annual jellybean buzz. I found a bag of all black ones at Wal-Mart on Sunday. Oh, yeah!