Author: Beth

Yesterday I had blood drawn in Pinehurst. This month my doctor is out of the country, so I didn’t make the trip tp UNC. When I was asking the local oncologist’s nurse to run the tests for me, I realized I didn’t know exactly what they’re called. I know I get a CBC and chemistry. Then I also get something that tells me what my immunoglobulins are doing. I thought it was SPEP, but it turns out it’s SIEP. She asked if I wanted a metabolic panel, and I just said I mostly care about my kidneys, so as long as I see what my creatinine is, I’ll be ok.

I’m going to have to ask the doctor to write this stuff down for me!

I’ll get the results on Monday when I see the local oncologist.

I think I might look for another blog application to use. A few days ago, this one was used by some script kiddies to deface my web site. I don’t usually look at my own index page, so I didn’t even know! I was looking at a web stats report and saw a strange referrer there. I decided to check it out, and found that my site was on a list of what they call “owned” sites. Actually, just because a php script vulnerability was exploited, it doesn’t mean the site was “owned.” What’s implied by that term is that root access was gained. That’s not the case in this situation. I have seen what can happen when that occurs, and it’s not pretty!

I got the security hole fixed, according to the author’s recommendation. I really have to say that I hate hackers and script kiddies. They’re nothing more than vandals. If they were as smart as they think they are, they’d be in business making money, not playing around, doing the cyber equivalent of scratching cars with keys in parking lots.

When I was first diagnosed, I went to one MM support group meeting. It was just me (and my brother & sister) and one other MM patient and her husband. The whole cancer thing was very new to me. I asked the other patient what was important to keep in mind. She said that what she cares most about was that everyone treated her the same as they did before she had a diagnosis of cancer.

People say things like this, but do they really mean it? Or is it something that sounds great in a society where stoicism is admired? I’m going to go out on a limb and say that, unless you were previously addressed as “Your Royal Highness,” you want to be treated better than you were before your diagnosis.

Of course I believe that people should be nice to each other all the time, not just when times are tough. When you’ve been told you have a life threatening disease, you need extra niceness. You don’t want to be treated the way people treat you when they assume you’re going to be around another 40 years. Cancer is a nasty ride, emotionally and physically, and I want people to be nice to me. I’ve been thinking about having bumper stickers made like the ones you see that say, “Be nice to me. I donated blood today.” How about, “Be nice to me. I have cancer?”

What’s my point? I’m saying that you don’t have to pretend you want people to ignore your condition. You need extra love and attention. So do they.

I accidentally washed my beeper again. This is the third time in recent months I’ve done this! Can I blame it on thalidomide?

It’s been a while since I posted much, so here are some updates.

It’s my time to do 4 days of dex (40 mg each day). This time I feel extra tired and hope I can sleep tonight. I plan on taking something to help me sleep. 3 more days to go.

I had a flat tire on my new car. Since when does a new tire cost $140?

Acupuncture has helped the tingling and weird feeling in my hands. I’m going for more on Friday. I really hope this is tax deductable, because it costs a fortune to go 1-2 times a week. Even if you have insurance, a serious illness really kills your finances.

There’s a really interesting article about sleep and cancer here:
Stanford Study

I got a new spam & virus filter machine at work, and can’t wait to get it! We filter all our dialup/DSL customer email for junk mail & viruses, so this one is for web hosting customers.

It seems like it must be SCT season. Lots of people on the list are going through them right now. Dan is home from his, after 17 days in the hospital. I wish I wasn’t so afraid of the process. In some ways, it would be good to get it over with. I guess I want to know how my disease responds to treatment and have some idea about relapse times. I know someone who had 2 years of remission from VAD. I would guess there are people who have had lengthy remissions from thalidomide and dex. If that’s possible, then I want to avoid the toxicity and complications that come along with SCT as it’s currently done.

My doctor says there’s no rush to worry about stem cell transplant right now. He thinks my MM is stable, and the IgA is slowly going down as a result of 5 months of the thal/dex combination and Zometa.

Doc says IgA was 781, so it has resumed its downward course somewhat. Lots better than where it started, at 4625 at the end of January!

I’m hoping it’s the dexamethasone that’s largely responsible, because I’m afraid I might have to stop the thalidomide before it causes too much damage. I think I have the start of PN in my hands & feet.