Tuesday, December 18, 2007

Lightening the Chemical Load

First, if you haven't read the previous blog about Goldmine's Marathon, please scroll back to it after you finish this. The listing of blogs should appear on the right side of your screen when you log onto the blog. And if you can help him in his fundraising effort for blood cancer, please do, even if its only $25 or $50. I promise this is the last of my fundraising for awhile.

Now for the Rifkin visit yesterday: Rifkin has moved me to a maintenance dose, despite telling me that the standard protocol for the drugs I was on is now 8 cycles. (I went through 4 cycles in 3 months, which means another 3 months to meet the 8 cycle protocol). He seems comfortable with his decision and I'm elated because the maintenance regime is once a week with the velcade (down from twice), steroids once a week (the same), heavy duty antibiotics 3 times a week (the same) and NO REVLIMID (down from every day). The revlimid is what was knocking me down, so I'm expecting this maintenance dose will let some of my energy return. When I was on the velcade and steriods twice a week in 2006 for about 4 months, as I recall my energy was pretty good, and I was even able to drink some wine, something I couldn't do with the revlimid. If this maintenace holds my numbers (won't know those until next week) I'll be on it for the indeterminate future, up to 2 years is the current recommendation. Then who knows, maybe they'll have this disease figured out. It does seem that it is moving toward treating a chronic disease as opposed to just prolonging my life for a short period of time. I tried to get some info from Rifkin on some of the new drugs currently in trials, but my questions were rather summarily dismissed with, "those are in the very early stages of research". In other words, "shut up and quit trying to be the doctor." Oh well, I'll just keep asking and eventually he'll answer. (that's the same kind of perseverance that keeps me going, so no one is going to squelch it, even my doctor!)

Importantly, I got my first Monday night's sleep last night since September. Every Monday I got juiced with velcade, steroids, and revlimid and couldn't sleep more than 2 hours, on a good night. A heavy duty sleeping pill helped, but they didn't previously override the drugs. So, I am excited about actually sleeping on Mondays!

Julia returned late Friday night, after a 40 hour trip from Cape Town, through Johannesburg, Senegal, New York City, Atlanta, and Denver. She is still exhausted. We are gradually drawing out her stories. She has had a terrific experience. I will share one thought. The director of her program told the group as they were preparing to leave not to think that Africa needed their help and not to commit to coming back to bring a better life to all those in Africa who have much more difficult lives (which they do). "Enjoy your comfortable lives and the blessings that come with living in America at this time. Do not feel guilty. If you are motivated to help people, there are many people in your own country who need your help. Go help them because you have an understanding of the cultural context giving rise to their poverty and thus, will have a better chance of bringing actual change to their lives." (or maybe this is just her way of subtly telling us she's not going back to work in Africa!)

Catherine has been promoted to senior financial analyst at her consulting firm. While we are very proud of her, I couldn't help asking, "how can a 24 year old be a senior anything?"

Merry Christmas to all,


Granma Joan said...

That is the best news I have heard in a long time. What a great Christmas present.I am so happy for you. your perserverance has prevailed. Love,Dan's Mom

scoopondan said...

This is a test for Jim Weiler, since he claims he doesn't know how to post a comment