Tuesday, January 31, 2006

Hello my baby! Hello my honey!

Today I took World's Cutest Baby to get her picture taken. Before we left the house, she was smiling and laughing at anything remotely hilarious, such as the fact that the cat was walking by. Once inside the photo studio, however, she became Dark, Brooding, Pensive Baby who clearly felt that life was one big pit of despair and nothing would ever seem funny again.

The highlight came when the photographer put her in a backdrop filled with fake rose petals, and she proceeded to eat the rose petals -- in a dark, brooding, pensive manner, of course.

Five minutes after we left the studio, she was laughing with glee at a display in a Hallmark store.

Remember that old Warner Brothers cartoon where the singing frog performs fabulously for one man but croaks pitifully when anyone else is around? It was exactly like that. If I remember correctly, the frog's owner ends up in a mental institution at the end of the cartoon.

Of course, I still purchased the photos. Dark and brooding or not, she is still the World's Cutest Baby.

Happily ever after

If you have not been following along with the comments, I should let you know that we have two new excellent (or should I say ex-CELL-ent?) entries in our cell-naming contest. Jenny, my sister, writes:

Why give all of these cells a bad rap? Why not help along their self-esteem and encourage them to behave? Therefore, I vote for Cindercella, with the hope that one day your cells transform into beautiful princess cells that dance divinely, blush modestly, and live happily ever after (with hottie prince charming cells, nonetheless).

Plus, the cells could drive around in giant pumpkins! Think how cool that would look on the biopsy!

This next one comes from my mom:

OK, Mike. I can't top you (sigh!), but as long as we're on movie themes, I suggest Badcell Wrathbone - a rather evil-sounding name, but optimistic in that it gives hope for detecting a cure, especially if you find a hematologist named Dr. Watson.

Keep them coming, folks! Keep them coming!

Sunday, January 29, 2006

... and my bone marrow is a scale model of Tokyo

We have received the first entry in our Name That Cell contest from dear family friend and notorious punster Mike P:

"I like 'Godcella.' Ruthless, devastating, kicks butt on miniature things. When doctors diagnose it, they can say, 'Rook! Godcerra!'"

Oh, the rest of you want to try to top this. You know you do.

I doubt, however, you can top this awful thing (and in the world of puns, "awful" means "excellent"), also sent to me by Mike P:

"Glad the trip to the Mayo went so well. Doctors must be more than the J.D. Salinger type of person in Catcher in the Rye -- stopping people before they plummet off the edge. They need to give each patient some direction and hope. The U.S. Women's Soccer team captain, Mia Hamm, knows all about teetering on the edge and flirting with disaster. Her comments, although appropriate, are at best cheesy. I guess my message to you is to heed Mia's comments through the lens of Salinger's book, but cling to what the clinic says. Briefly, put the Hamm and cheese on Rye, but hold the Mayo."

Sigh.

Saturday, January 28, 2006

Play "Name That Cell"

I've been thinking about what I wrote yesterday, about how my doctor said the plasma cell is a "badly named cell." I think this calls for Cancer Girl's Official Plasma Cell Re-naming Contest.

I'm now accepting entries. It can be something derogatory (The Cell from Hell), or perhaps just the opposite. If a doctor said to you, "I'm sorry, but you have increased numbers of Super Terrific Happy Cells in your bone marrow", it might take some of the sting out of the bad news.

Ideas?

Friday, January 27, 2006

My report card

I got my report from the Mayo Clinic yesterday. This is a copy of all of my test results from my last visit, as well as a complete summary of the doctor’s impressions and recommendations. I hate and love getting these documents. I hate them, because I get to see in black-and-white numbers exactly what is wrong with me. I love them, because I get to see in black-and-white numbers exactly what is right with me.

I try to dwell on the positive. Sure, my protein is terrible, but look how great my erythrocytes are doing! I have no idea what an erythrocyte is*, but apparently mine are doing well. Hurrah!

The Erythrocytes would be an excellent name for a band.

Every time I come across a multiple myeloma patient’s blog, posting on a message board, or anything else, my first thought is, “But what are your NUMBERS, man? Tell me your numbers!” I can’t tell you how many blogs I have slogged through,** reading posts about how much ruder Simon is on this season of AI***, trying to find these numbers. Because I know how this number obsession can be, I will post mine.

If medical mumbo-jumbo makes your eyes glaze over, I won’t be offended if you skip the rest of this post; however, I’ll try to explain everything as well as I can.

When you have multiple myeloma, you have a high number of abnormal plasma cells in your bone marrow. Plasma cells are part of your immune system, and everyone has them. (They have nothing to do with the white, liquid part of your blood, which is also called plasma, as my Mayo doc explained. “It’s a badly named cell,” she said.)

In my case, one plasma cell somewhere, sometime, went bad and turned to the Dark Side and started multiplying itself. In most normal, healthy people, these plasma cells make up about 1 to 2 percent of the bone marrow. My bone marrow contains 25 to 30 percent plasma cells. Mine aren’t nice, normal, friendly plasma cells, either. They are the dark, brooding, I-just-got-thrown-into-a-volcano Darth Vader plasma cells.

Plasma cells produce immunoglobulins, or proteins, to help fight infections. This is what they are supposed to do. Because I have the Darth Vader plasma cells, however, mine are sending out way, way too much protein, giving me an abnormal level in my blood. A normal total protein level is 6.3 – 7.9. Mine is 9.7.

Your total protein is made up of specific types of proteins, each identified with a different letter. My IgA and IgM proteins are normal, but my IgG protein is way up there at 3640 (the normal range is 600 – 1500). My M-spike (another way to measure my IgG protein) is 3.7. To put my M-spike in perspective: If you’re using the staging system for myeloma (Stage I is the earliest stage of the disease, Stage III is the most advanced stage), your M-spike needs to be below 5 for you to qualify for Stage I.

By the way, fewer and fewer doctors are using this staging system anymore. My Mayo doc doesn’t. I’m just using it to give you an idea of how high my levels are: They’re not great, but they’re not as high as they could be, either.

If your spike is 3.0 or below, you could fall into the category of something called “Monoclonal Gammopathy of Unknown Significance”, or MGUS for short. This is one step down from smoldering myeloma (what I have) and has a much, much lower risk of progressing to full-blown myeloma. A lot of people with MGUS never do progress. I have seen a few Internet articles that say anything below 3.5 qualifies as MGUS, which would put me baaaaaaaaarely in the danger zone. The Mayo Clinic, however, uses 3.0 as the cutoff. Dang.

Have I lost any of you yet?

Now that I’ve covered everything that’s wrong with me, let’s cover some stuff that is right:

Hemoglobin, or iron level, is important, because myeloma can cause severe anemia. Mine is great at 13. (Normal levels are 12 – 15.5)

Myeloma patients often have abnormally high calcium levels, because bone is breaking down and releasing calcium into the blood. My calcium is just fine at 9.4. (Normal levels are 8.9 – 10.1)

Creatinine, or kidney function, is very important to check in myeloma patients because all of that calcium and protein floating around can do a number on your kidneys. Mine is fine at 0.9. (Normal levels are 0.7 – 1.2)

Doctors also look for several “prognosis indicators” in myeloma. Fortunately, all of mine are good right now. Here are some of them:

Beta-2 Microglobulin shows how advanced the disease is. You want this to be less than 3; mine is 1.37.

Albumin levels reflect your overall health, and you want this to be greater than 3.5. Mine is 4.1.

The Plasma Cell Labeling Index shows how many plasma cells are actively growing. You want this to be less than 1 percent. Mine is a low, low 0.2 percent.

Chromosome analysis: Myeloma patients with an abnormal Chromosome 13 usually have a more aggressive form of the disease that doesn’t respond as well to treatment. My Chromosome 13 is just fine.

Of course, if you are looking for medical advice, you should probably seek out a more knowledgeable web site, such as http://www.multiplemyeloma.org/ , which is where I got a lot of this information. I’m not a doctor; heck, I’m using my test results to name rock bands.

The M-Spikes would be an excellent name for a band.****


* It’s a type of red blood cell. Thank you, Google.com!
** Slogging Through Blogs would be an excellent name for The Erythrocytes’ first number-one hit.
*** OK, it’s true. He’s awful. But when he told that guy he looked like The Incredible Hulk’s wife? Come on, people; that was good. And, yes, I’m ashamed that I saw this.
**** Yes, I know I’m ripping off Dave Barry.

Got cancer?

Here's a cancer t-shirt web site that's even better. I came across it after David E. was kind enough to leave his comment about his CCKMA t-shirt -- that's "Cancer Can Kiss My ..." well, you know. This is a family-friendly blog. (But thanks, Dave! I know you will wear the shirt proudly!)

Here's the site:

http://www.gotcancer.org/

My favorites are "Cures rule, cancers drool" and "My oncologist is better than your oncologist".

Thursday, January 26, 2006

Moody but loving

A friend of mine sent me this link. It's about Cancer the astrological sign, but oddly enough, it seems to apply to my situation as well ...

http://www.cafepress.com/tomorrowsedge/838484

Wednesday, January 25, 2006

The Great Oz has spoken ... to me on the phone

I'm feeling much better about Dr. Great and Powerful Oz. He called me this morning to say he agrees with the Mayo Clinic plan, and he wants to see me in mid-April for my next blood test. I don't have to go in in February after all, and I can go to the nearby office instead of dragging myself all the way downtown. Woo hoo!

No doctor visits for almost three months. I'm not sure what to do with myself. I'm sure World's Cutest Baby will come up with something to keep me occupied. She usually does.

Monday, January 23, 2006

Pay no attention to that man behind the curtain

I last saw my Mayo Clinic doctor on Jan. 13. Her final recommendation was no treatment for now (hurrah!) and blood tests every two to three months. I tried contacting my local oncologist last week to see if he'd go along with this plan; I go in to the office on Feb. 6 so that we can have this discussion.

How I love the Mayo Clinic. The Mayo system is so much better, and, surprisingly, it was much easier to get an appointment. Getting in to see my local guy was like getting in to see the Great and Powerful Oz. I fear the office co-pay is going to be $30 and the broomstick of the Wicked Witch of the West.

I'm hoping the visit will be pretty simple and straightforward:

ME: Do you agree with the Mayo Clinic?
GREAT AND POWERFUL OZ: Yep.

ME: See you in March?
GPO: Sure.

ME: I love the flames shooting out of your giant green head. Are those new?
GPO: Oh, these old things?

But if I've learned anything in the past few months, nothing is ever simple and straightforward. We shall see.

Meet my new roomie

I've wanted to start a humorous blog for a long time. What finally motivated me to do it was being diagnosed with cancer in November 2005.

This, I realize, is not the best way to start a humor blog. What’s funny about cancer? Well, nothing. One day last December, however, while I was anxiously hanging around a computer lounge at the Mayo Clinic, wondering if anything would ever seem funny again, I got an e-mail from a college friend of mine who has had two heart transplants in the past few years. He told me to find humor wherever I possibly could; it would save me.

This man has had two heart transplants and still seems relatively chipper, so I believe him.

I’m lucky: I’m still mostly healthy and don’t need treatment yet. I have a rare form of blood cancer called multiple myeloma. This disease mostly strikes older people. Thirty-year-olds do not get this. Apparently, my body doesn’t know I’m not a senior citizen. Attention, body: Just because I like to listen to Frank Sinatra and laugh out loud at reruns of The Golden Girls does not make me old.

Lame, yes. Old, no.

The myeloma was discovered by accident during a routine blood test at my annual physical. Since the diagnosis, I’ve made two trips to the Mayo Clinic, which is the Mall of America of doctor’s offices. On our last visit, my husband and I were thrilled to discover a corridor containing a Quizno’s Subs and a Caribou Coffee. Want an iced chai to go with your bone-marrow biopsy? That’s convenience.

My doctor at Mayo determined that I have a form of the disease called “smoldering” myeloma, which means that, for now at least, the cancer is hanging around doing nothing. It’s caused the protein level in my blood to rise and certain cells in my bone marrow to multiply, but otherwise it’s lurking quietly; it’s not affecting my organs; it’s not affecting my bones. I’d never know it was there. Doctors want to check on me every few months to make sure the cancer doesn’t suddenly decide to get off the couch and do something productive with its life.

Let’s all pray the cancer was a philosophy major at college.

How long will I smolder? It could be a year; it could be 10 years. There’s really no way to know. A friend of mine pointed out that a diagnosis of smoldering myeloma does sound awfully, well, sexy.

“’Don’t mind me,’ Karen said, leaning against the veranda as steam drifted from her bodice. ‘My myeloma is smoldering.’”

So, yes, I have cancer, but I’m not exactly “fighting” cancer, as are so many other people who are much, much braver than I am. At most, I’m trying to peacefully co-exist with cancer, to come to an understanding with cancer, to not tick cancer off. The cancer and I are like a pair of mismatched roommates who are trying to work out our wacky differences and live in harmony. The cancer and I are singing The Odd Couple theme song.

Da dada da da da, da dada dada daaaaaaaaaa da.

Some day, however, when the cancer starts holding late-night parties, leaving its underwear hanging on the doorknob, and drinking directly from the milk carton, I will evict it. I’ll hurl its boxes of books and Pink Floyd CDs onto the lawn and promptly change the locks. I’ll never speak to the cancer again, no matter how many apologetic messages it leaves on my machine.

For now, though, I am continuing on: living, hoping, and even laughing, just a little bit.