Category: General

I had my monthly appointment at UNC with Dr. Orlowski today. I always like seeing him. He’s a terrific doctor. Starting in September, I’ll change the way I do my dex pulses. I’ll take 40 mg of dex 4 days in a row instead of taking it once a week. This will give me more recovery time and hopefully more days of feeling better. I’m not looking forward to the 4 days of dex and a few days after (which is the crash), but I’m anxiously awaiting 3 weeks of dex free life each month.

I don’t have the results of my blood tests yet, but will post the info when I get it.

This is an entry from Dan’s diary. He’s about to undergo a pbsct.

“Chase Peterson is a medical doctor and a former president of the University of Utah. He’s had multiple myeloma for the past four years, and he says he was days away from having an SCT when he decided he didn’t want to do it. He encouraged me to think about it carefullly based on the potential long-term benefit of a procedure that has significant risks as well as benefits. I’ve decided to go ahead and do it, based on my doctor’s recommendation and my own research, but I understand his position.”

Dan’s diary: http://www.mustard.com/myeloma.html

AFLAC is currently denying my claim for using dexamethasone as chemo. They said that one must use at least 40 mg of dex to qualify. When I provided supporting documentation to show that I’m taking 40 mg of dex each week (and the initial 40 mg for 4 days on with 4 days off for 4 cycles at the beginning), they rejected that. They said that the dex was dispensed in 4 mg tablets, so it doesn’t count. It has to be dispensed in 40 mg tablets or has to be infused. Um. Well, there is no such thing as a 40 mg tablet. I wonder if I could have the pharmacy make one for me? Or, can I just have my Dr. write an order for me to have the dex IV? I don’t think Blue Cross, my primary carrier, would like that. That would drive the cost way up. Anyway, I plan to appeal. Apparently, they don’t have much experience with with this drug as an oral chemo. I’m not sure what cancers it’s used in. Maybe not many others. Dex is a very hard drug to take, and I know of quite a few MM patients who can’t tolerate it and have to stop that part of their treatment because of the side effects. They can be quite severe, and include congestive heart failure. I’ll see Dr. Orlowski on Wednesday and show him their letter to see if he can write to them to explain the reason why dex is dispensed in 4 mg tablets.

It’s a really beautiful morning today. The temp is below 70 for once, which is fantastic. It’s been too hot here lately, and too rainy! I enjoy North Carolina weather most in the fall and early winter. Then it’s nice again in late winter and early spring. The humidity has been pretty severe lately, since we’ve been having all this rain. Our county has experienced some serious flooding. I live at the high point of my neighborhood, so I’ve escaped most of it. However, a lot of the gravel from my driveway can be seen at various intervals down the street from me.

The 2004 Toyota Sienna I bought a few months ago came without cruise control, which is a necessity for me. Without it, making long trips is impossible. One thing cruise control is good for is the prevetion of speeding violations. It also makes it possible for me to flex my right leg a lot more. I do need to stop more frequently than I used to, to keep from experiencing that nerve pain that results from sitting for too long. A few hours is the most I can really sit (if that) without having lower back and leg pain, that takes days to recover from. Gosh, when I was in my 20s, it was nothing for me to drive hours and hours. I remember one time I drove from Denver, CO to Kingman, AZ in 18 hrs, only stopping to buy gas when I needed it. I routinely drove for enjoyment. My favorite thing to do after work late at night was to drive from my home in Sunnyvale, CA (near San Jose) to San Francisco and back, just to kind of unwind. Nothing ever seemed too far for me then. Anyway, back to the cruise control! I learned last week that there is no aftermarket cruise control for the 2004 Siennas. The dealer has told me that the only way to have it, is to get it in a new vehicle. So it looks like I am going to be trading my van in some time soon. They’re going to give me top $ on the trade, since I was told at the time of purchase that I could have cruise installed, and even paid in advance for it.

I had my 42nd birthday over the weekend. My sister and her family came down from VA for a surprise party. It would have been a surpise to me, except that someone let the secret out. It was a fun weekend though. I had cake, and that was a nice departure from my typically sugar free life. I had some thoughts about the possibility that I don’t have many birthdays left. I’m going to confess that I’ve never really found much joy in life. I put on a good show though, and not many people know that I’ve suffered terrible depression throughout my life, even having been hospitalized as a child. For many years, life has been a struggle for me. Sometimes I am relieved that I just may not have to suffer through another 30 or 40 years of life. Maybe what I’ve read about depression contributing to disease is true after all. I intend to talk to my doctor about this tomorrow. I’ve been on medication off and on for years, and sometimes it helped. Sometimes it made things worse. I guess it’s a matter of finding the right one.

Gail Venanzi is creating a photo album of friends from the ACOR MM listserv, which can be found at http://www.photocean.com/myelomafriends.html

Last month I had a 24 hour urine test, so I asked my doctor about the results.

Me: How did my 24-hr urine test look?
Dr. O: This looked good, with no detectable light chains.

Back on 3/24/2003, there was a detectable light chain (lambda), so this is an improvement.

My next appointment will be August 20th. Every month blood is drawn, but the 24 hour urine is done on a less frequent basis. I think maybe every 6 months. It’s an inconvenient, cumbersome procedure. The patient (me, in this case) must collect all urine for a period of 24 hours. The jug is kept refrigerated. In order for the test to be accurate, you must collect it all for the entire 24 hours. Can you imagine how this must be if you’re traveling?

The Bush administration wants to be able to revoke the licenses of doctors who prescribe marijuana to sick and dying patients in states like California, where there’s state law that permits the use of marijuana for medicinal purposes. In fact, they want to be able to revoke the doctor’s license for even TELLING a patient about the purported benefits of the use of marijuana for medicinal purposes.

I don’t use marijuana myself, but if I believed it would help me feel better at some stage of my disease, it would be worth a try. I know there have been clinical trials that have shown it to be helpful in alleviating nausea associated with chemo, and it is effective in stimulating appetite. I think I also read about a study using marijuana to help with peripheral neuropathy.

I wrote to one of my senators, Elizabeth Dole, to ask her to think about this matter.

The bottom line is, if anyone is dying and suffering, why should they have to seek street drugs to help make them feel better?

Click here for Newsday story

I had an MRI and an ultrasound yesterday. The ultrasound was done first to rule out DVT as a cause of leg pain. I’ve been having pain in the right leg since June. We’ll see what the MRI says in the next couple of days, I suppose.

This is the blood I found in the HLA test kit Duke sent to me back in February. I was about to throw it away, but decided to look at it. I’m glad I did, because it contained 2 tubes of someone’s blood. A 46 year-old female with type AB+ blood. This is something that should never have happened! I can’t just throw it out. It has to be properly disposed of, so I’m hanging onto it until I go for my next appointment at UNC, and someone there will properly dispose of it. I found the blood when I lifted the blue foam out of the container. It was underneath there.