Author: Beth

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.

My feet are pretty much numb up to my ankles from thalidomide. I feel (or don’t feel it?) it most in my toes and the soles of my feet. I was on the supplements suggested to me by Dr. Richardson at Dana-Farber for the entire time I was on thal, and continued it beyond stopping thal. It didn’t do much for me. I had acupuncture the entire time I was on thal, and that didn’t help either. Does anyone know of anything that does help? Is the damage permanent? I’m very glad I stopped thal when I did. I wish I had stopped sooner! I do want to add that the PN did progress after I stopped. It did get worse.

I have a problem with my blood sugar when I take dex, and only for a period of 24-32 hours. Overall, my blood glucose is fine. I suppose I should be grateful! Today, I haven’t even eaten anything yet, and my BG is 150 mg/dL. I’ve had no food for well over 14 hours. I’m hungry though! So I’m going to have to have something.

I saw my endo, and my HGB A1C for the last 6 months was 5.4%, which is better than it was last time, even though I’ve gained weight and he expected it to be higher. 6 months ago it was 6.1%. My average BG over a period of 3 months, based on a test he did is 100 mg/dL. 6 months ago it was 120. When I have the random BG test done each month, it’s almost always under 100. Usually in the 80s. So I don’t have diabetes. It’s just the dex. I worry that it could cause me to become diabetic though. Has that ever happened to anyone?

At this point in my life, the very most valuable thing I have is my medical coverage. One of of my business associates allowed a relative to be covered under our group plan, which caused an extra expense for our company. Eventually, after much foot dragging, the individual finally agreed to actually pay for her own insurance. This is after a tremendous amount of other charity was also given to the person. Tens of thousands of dollars, actually. Well, I found out a few months ago that having someone on your group plan when they don’t actually work for you is not allowed, and that, if our insurance company did an audit, we could lose our group plan. I IMMEDIATELY told my business associate, who supposedly told the parasite relative to find her own insurance.

It’s been 3 months now, and the stress has been killing me. I notified the person myself that the ride was over. In return, I received threats. I am still in jeopardy, and apparently, if I do go ahead and cancel her insurance, she’ll make sure we ALL lose our coverage. Nice, huh? I have contacted my attorney and am hoping he can get something done about this. This leach relative happens to be an attorney also, so I am looking to have the state bar notified about her fraudulent use of our group plan and her threats. Yes, this person is related to me too. Apparently she doesn’t give a crap that I am afflicted with cancer and can’t get covered by anyone else if I ever lose my insurance.

This is a bad, bad person.