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 , 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,!
** 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.


John Wagner said...

Hi Karen,
I found you from DaveE's blog. Just finished reading it all and I love it! Congratulations on the "report card!" Really does sound good. Isn't it amazing the new language we have to learn? Some of it has become common to me now, but when I talk to other people, their eyes just kind of glaze over. Numbers are the concrete things we can see that tells us how we are doing. I can't wait until next week's numbers to see what the first week of chemo has done for me. BUT, I need to train myself to also rely on how I feel and not let the numbers get me down! I should have had lots of infections these last few months, but all my co-workers have had the crud, my family has had it, but I haven't. Go figure. Maybe I am too ugly, or my bone marrow and blood doesn't have any more room for nasty criters to take up residence. Being a "lymphomaniac" those are the numbers I want to go down next week. OK, sorry, this is your blog. I am still wired. One more day of heavy steroids, yea! Darn, no bulking of biceps either!

Anonymous said...

You always have gotten good report cards. Keep up the good vibes in this very P.C. (plasma cell) world. You should be able to sing "D'em Bones" without a thought of PCness.