Category: General

Is anyone going to be at the Atlanta IMF Patient & Family Seminar in March? I’ll be there. I hope to see some of the people I’ve written to on the lists, and to see some of the people I met at the January, 2004 event. Unfortunately, I got sick in January, so I missed the last day! I so hate when that happens. I’m sure I picked up something from the flight to Ft Lauderdale. I ended up being sick for weeks. A bad cold, a GI bug and then another cold. Antibiotics finally got me back on my feet. This time, I’m driving. ATL is only a 6 hour drive, thank goodness. My brother lives in Atlanta, so it will be nice to see him. He’ll have dinner with us one night.

WordPress is the application I use for this blog, and there’s a new version out. I’m going to upgrade. I only hope it doesn’t hose anything. I’ll do a backup beforehand, so I can revert to the previous version if I need to. I’m hoping it’ll go off without a hitch.

I’m back on 2 days of dex a week now. The first day is 40 mg and the second is 20 mg. This seems to be the only way to keep the IgA down. At 40 a week, it was rising at the rate of about 200 mg/dL a month. Now, it’s on the decline after just a few weeks. See my labs for the latest results.

I don’t like to take 60 mg of dex. The side effects are worse than when I just take 40, of course. The last time I did this though, in August, 2004, my IgA was down in the 800s. When it got back up to over 1500, I decided it was time to take action. Now It’s down to 1183 mg/dL. We’ll see how it is next month, when I have my labs drawn on the 15th of March.

I called a friend who has cancer today. Sometimes months will pass between conversations. I’m afraid when I call, because I might hear bad news. She didn’t sound very good. I want to visit as soon as I can.

I’ve been very fortunate so far. My cancer hasn’t been very aggressive, and I’ve been able to skate by on what one doctor called minimal treatment. When I first found out I had MM and went for my very first visit to an oncologist, I was afraid. I asked him if I was going to get old, and he said, “I think so, but it isn’t going to be easy.” I felt a weird combination of hope and fear. I forgot to ask him what his definition of old is. Later, when I went to see Dr. Richardson at Dana-Farber, he said, “We hope to get you to your 50th birthday and beyond.” Another doctor said he thought I could be a long term survivor. Maybe a dozen years. Twelve years seems like a long time now that I’ve known more people who didn’t get that much. So, I feel lucky.

It’s my night to take dex. I dread Fridays.

I made a chart of my IGs from January, 2003 to January, 2005. When I look at it like this, it doesn’t look so bad to me. Looks pretty stable, doesn’t it?

My IgA is up again. The 40 mg of dex I take weekly must not be enough to keep it back. Prior to October, I had been taking 40 mg on Saturday and 20 mg on Sunday, and that was keeping me stable pretty well. I couldn’t stand the side effects though, so I decided to cut back to 40. My IgA is now at 1520 mg/dL. Unfortunately, Dr. O is out of town, and we haven’t talked about what to do about it. I’m not thrilled about the idea, but I would go back to the 60 mg/week schedule. I could also condsider pulses of 4 days on/4 days off, like I did (x4) in April, 2003. That, along with 50 mg of thalidomide a day, got my IgA from 4628 mg/dL to 995 in about a month. At least if I did that again, I’d be able to tell for sure if I’m refractory to dex or not. Even though I hate dex, I would be panicked to have to think about what to do next. The thought of SCT, as you know, terrifies me. I’ve been to a hypnotist to try to overcome that fear. If anyone has any ideas about what else I can try, please let me know.

I was at the post office today, to send some things. One box was for some soldiers in Afghanistan. While I was waiting in line, I saw flat rate priority mail boxes! I’m going to repack the box and add some other stuff and send it tomorrow or Thursday. The flat rate (just so you know) applies even to APO addresses. It’s under 8 bucks to send a package — any weight. All that matters is that it fits in that box.

After going to the post office, I stopped to pick up Bud, and we went to our favorite park for a walk. When we got there, we discovered it was closed for controlled burning. We went to another park where the trails aren’t as good.

Tomorrow is my monthly appointment at UNC. I’m getting really tired of this. Month after month, year after year. How do people do this for years and years? I suppose you’re thinking it’s better than the alternative. I just needed to complain.