Hello everyone.
I haven't published anything lately, because life was humming along very nicely and I was sure I would bore everyone with reporting on our trips, family time, etc. but lurking under the surface for the last several months has been the realization that eventually I was going to get unsettling news from my every six weeks evaluations at Boston Medical Center. So, last time I went to BMC (July 23 & 24), we were told that my kidney function had worsened and that my Amyloid "numbers" had gone up about 14 points. Over the last year they had hung out in a plateau going up a couple of points each time I had the tests, but nothing alarming. Now that the doctors feel the Amyloid is "trending upward" fairly significantly, it's time to try to slow it down and maybe get it into the normal range.
So, after about two weeks of soul-searching, asking questions,talking to Steve, the kids and some friends, I have decided to go on a new clinical trial that is just opening up in Boston. It is for a drug called Pomolidimide which is similar to the Revlimid I had last year. It has been throughly researched for treatment of Multiple Myloma, but not vetted for Amyloid yet. However, from what I can tell, all the Amyloid treatments and clinical trials are all based on what has worked for Myloma. I will be the third person to be on this trial with Pomolidimide. The possible side effects are similar to Revlimid and include low white cell count, low platelets, fatigue, blah,blah. I'll need to break out my mask again and keep out of crowds, malls, the usual. No more grocery shopping for me (one of the few benefits! :) ) This trial will last for just a few months to up to a year, depending on how I tolerate it. I will start on August 20.
In the meantime, I also have my kidney function to worry about. I've had to REALLY reduce my salt intake (I was careful about it, but now I have to be fanatical). And reduce how much I can drink and take more diuretics. I have lost about 8 pounds in the last two weeks, which was all fluid. Yikes. If I can reduce the amount of Amyloid forming in the kidneys then I can keep the function where it is or maybe improve somewhat. That is the hope!
Steve is having knee surgery on September 10th to replace his bum knee. He is looking forward to no more pain (me, too), but we may both be on the "PUP" list for a good part of the fall.
We do have some wonderful things coming up in the next couple of months: Alan and Brooke are expecing a baby girl in December so we will have another grandchild! The new baby will join Casey who is starting kindergarden. Jackson continues to do very well....he is really cute!...and Sarah and Matt are coping with a new baby, new MBA and job, new schedules and hanging in very well. Carrie and Paul have moved and the girls are really enjoying their new yard. Elizabeth will be in first grade and Charlotte missed the kindergarden cut off and will be spending another year in Nursery school. They do all kinds of fun stuff.....dance, swimming, soccer and coming up next, karate.
So, it's time for me to ask for more prayers and good thoughts to come our way. We will need them!!! And I so appreciate your comments and cheering me on. I really do try to be a Buffalo!
