Month: April 2005


I want to thank everyone for being there for me! Thanks to my family for checking up on me and helping out when I need it. I’m not one to ask for help, but when I do ask, they’re there. Thanks to LN for calling me every day and making sure I’m ok, and for taking all that time off work to come and see me (I know you’d do anything for me, and I really appreciate that). Thanks to CH for checking up on me when I’m not so active on the list. DH, thanks for calling, and I’m sorry I haven’t felt so great the last few weeks to talk much. You too, PG! SH & GM, you’re always there for me too! And ZM and JW, even though you’re struggling with your own cancers, thanks for staying in touch. Thanks to everyone at work for taking up the slack and never complaining.

Thanks everyone!

Started back on thal tonight

I started back on thalidomide tonight. It’s easier to call it thal. Surprisingly, Dr. Durie calls it thal too. Thalidomide is a mouthful. I took 40 mg of dex this morning and took 50 mg of thal tonight. I’ll take 50 mg of thal some other night this week too. Dr. D. didn’t think that it would cause a progression of my PN, so I’m going to try it again. If it does start anything, I’ll stop right away. I’m not sure what I’d try next, but I think I may see about using pred instead of dex, since dex isn’t doing its job anymore. Dr. Orlowski had told me once that he had patients who responded to pred after dex stopped working. I’ll cross that bridge when I come to it.

Mom’s home from the hospital now. All her tests were normal. She had an elevated WBC and a UTI, so she has Cipro for that. I asked to see all the lab reports, but we didn’t get them. :( In this hospital, they’ll just walk in and say, “I’m going to give you a shot!” If you don’t ask, they don’t tell what it’s for. Strange, huh? They don’t tell you what your BP is or any of that! I’m used to something quite different where I receive treatment (UNC Chapel Hill).

Oops. Not skipping dex.

Well, I got my lab results back, and I’m not going to skip dex this week. My IgA is up from 1087 last month to 1417. Normal range is 40-390. So I don’t want to skip again.

My mom is in the hospital tonight. She had some chest pain and went to the ER this afternoon. They admitted her. I hate that she has to be there, but it’s the best place for her tonight. She’s on a heart monitor and has a nursing staff looking out for her.

Skipping dex again

I’m skipping my dex dose again this week. The doc suggested that I not take steroids while I have shingles. It’s pretty much cleared up now. It’s nice not to have to take the dex, but I think my labs will show that my IgA has gone up. My total proteins are up, and I’ll know what my IgA is later today. I wish I could take a couple of months off.

Verizon Wireless

I signed up for Verizon wireless back in Februaury. There was a 15 day return period, during which the cancellation fee would be waived. It turned out there was no service in my area, so I had to return the phone and cancel the service. I did everything according to the book.

A few weeks later, I got a bill for over $200! I called Verizon, and was told the phone I returned hadn’t been marked as received in the system. I check online with FedEx, and saw that it had been signed for. I assumed it would only be a matter of days before their system was up to date.

I was wrong! Even though the phone was recieved on March 4th, they still had not updated my account in their system. I called again, and was told the same story. Basically, since the phone had not been verified as being received, I owe the money. I got some serious resistance from the customer service agent. I said that I had the signature from FedEx, and she said, “That’s FedEx. not us.” That’s when I lost my temper. I wouldn’t say I was irate, but after I told the person that it’s not my job to make sure Verizon people are doing their jobs, she hung up on me!

I called back and talked to someone with a brain. It’s all straightened out now, but I can’t help but wonder if making the process so difficult is part of Verizon’s plan to get people to just pay bills they don’t owe. I don’t think I’ve ever heard any good cell phone stories. Have you?


Our online community has suffered some losses in recent months. Sadly, we’ve had to say goodbye to Barb Schultz and Barbara Jewell. Helen Volkema has also left us. I would also like to say goodbye to Max Stern and Bob Conn. All of these people have helped me in some way.

Change in treatment

I’ll be having a change in treatment soon, after having received advice from Dr. Durie. As soon as I can, I’ll start back on thalidomide — just 50 mg, twice a week. I’ll cut back on my dex dose, which is currently at 60 mg a week. I’m hoping to be able to go to 20 mg a week. I need to hold off on this for a short while though. I have a case of shingles that needs to clear up before I can take any more steroids.

I’m taking Famvir 3 times a day for the shingles. You can read more about it here.

I’m really hoping the thalidomide doesn’t cause any further progression of my neuropathy. Dr. D. believes the small dose will be safe. I know enough to stop if I feel anything getting worse at all!