There’s a Playstation 2 game that I’ve been hooked on the last week or so. It’s called Grand Theft Auto: Vice City. Maybe you’ve seen ads on TV for it? It’s addictive and quite fun!
I originally had an appointment with Dr. O. yesterday at noon. Unfortunately, at the time I should have left to make it to UNC on time, we were having severe weather here. I called and rescheduled for next week. Wouldn’t you know that the bad weather subsided within the hour? I wouldn’t have had enough time to get there though, so I’ll have to be happy with an appointment next week. I went and had my labs drawn on Tuesday, so everything’ll be ready when I get there. I like to have the results when I see the doctor, so I can ask questions if I need to. Normally, some of the results come back quite quickly (CBCs). I usually have to wait until later that night to get the immunoglobulins.
On one of my first all-encompassing blood tests back in January, one of the reports stated that I had two m-spikes (2.8 g/dL and 0.6) instead of just one. I don’t know how unusual that is. What it means is that there are two errant monoclonal lines. I started dex and thalidomide in April of 2003, and had a blood test in mid-May, which showed just one at 0.4 g/dL. In October, the report came back showing two again (0.3 and 0.2).
Next week I have an appointment at UNC with Dr. Orlowski. I’ll ask him what all this means. UNC doesn’t report an m-spike at all. Perhaps they don’t think it has any significance? The tests where I have m-spike reported are done here at the clinic in Pinehurst, Duke and Dana-Farber.
In addition, my serum IgA seems to have stopped its downward trend. It appears to have gone up a bit. This very well could be a normal immune response, since my IgG and IgM have also gone up.
It seems that after the first month of pulsed dex (4 days on/4 days off), the doses I changed to (weekly dex) more or less maintained the numbers. It’s possible I need another month of pulsed dex to make them move down again.
The owner of Cayo Espanto (http://www.aprivateisland.com) has generously donated time on the island to try to raise some money for research for MM. All we need now is an airline to give us a couple of round trip tickets. If you have connections at any airline that flies to Belize, please let me know.
My Tempur-Pedic bed was delivered today. Boy, is it nice! It’s adjustable and has a massage feature. The massage is very noisy, so it’s not very relaxing. No, it’s not like those Magic Fingers boxes you used to see in motels. It’s great to be able to elevate my legs or upper body. This one has a 10″ mattress. I had a choice between that, and the standard 8″ mattress. I can’t wait to go to sleep tonight so I can experience slumber on a Tempur-Pedic. I got a free Comfort Pillow with my purchase! (I know, I know… nothing’s ever really free.)
This was at a company picnic about 13 years ago! My sister and I were hamming it up for the photo. There’s nothing like an aluminum pan of rolls to brighten one’s day.
Sometimes I get really nostalgic for the past. It happens more now that I have this disease. I wonder what happened to all those years. They flew by so quickly, and I feel like I accomplished so little during that time. I know it’s not productive to lament the passage of time like that, but I can’t help wondering if it’s a common thing to do when you have a disease that’s described as fatal. It’s not an, “I don’t want to die!” feeling. It’s more of a “where did all the time go?” thing.
I bought a copy of Multiple Myeloma (on ebay for less than $10), edited by Gahrton & Durie. Chapter 1 is very interesting. Written by Robert Kyle, it covers a history of multiple myeloma. Some early cases are included. One patient was treated with leeches and the removal of a pound of blood. Later, he had “steel and quinine therapy,” whatever that is. Another patient received a rhubarb pill and an infusion of orange peel as her treatment in a London hospital. Both were patients of Henry Bence Jones. That’s a familiar name to those of us with MM. Bence Jones identified the protein in urine (he called it “animal matter”) that’s often seen with MM patients.
Some of the most respected MM specialists have books on myeloma being published: Anderson & Richardson, Bergsagel (ed.), Gertz & Greipp (ed.) and Berenson (ed.).
Dex gives me a ravenous appetite at times. I’ve heard from people who have gained 50-100 lbs while taking steroids. I’ve gained about 20-25 lbs myself. I don’t want to gain any more. My doctor tells me not to berate myself for not being able to lose weight while on dex, but I want to at least keep from gaining any more.
One thing that helped me was the change in my dex schedule. When I took it weekly, it affected my appetite more. Now that I take it monthly, I may pig out about 4-5 days during the month. Before, it was a few days a week!