Saturday, December 13, 2014

Every Day is Game Day

I haven't written much lately. Not much to say. Yesterday was my monthly Berenson visit.  Two months of maintenance in the books.  Maintenance is dex, velcade, revlimid and medrol. Infusion one day every other week.  Myeloma is funny. Not funny haha, but funny as in weird. It behaves so differently for each individual. I had been on maintenance for a year and a half. Then in March I relapsed, so we went back to Treanda (bendamustine). I did 8 cycles of treanda and we beat the myeloma back down to an acceptable level. So in October it was back to maintenance. The same maintenance I was on when I relapsed. So you'd think, perhaps this routine lost its effectiveness. Right? Wrong. After two months of maintenance my numbers are better than ever. The best they've been since I was diagnosed. Kappa light chains....down.  Paraprotein....down.  Great news, yet so hard to figure out. I'm glad I have a doctor focused solely on myeloma. In theory he understands what is going on.  My visit yesterday was quick.  Berenson said hi, told me I'm doing great and took some research blood. The research blood is nice, because that means they validate my parking. His office is in a high rent district on Sunset Blvd in West Hollywood. Normally we park on a side street. But with the heavy rains, I parked in the building lot.  It would of cost $15. But since I gave research blood. $0.  Woohoo. Small victories.

Last week I visited my mom in Berkeley.  I think it was the first time just me and her spent time together since I was diagnosed.  Sure, we've seen each other plenty. But this was the first chance to just have my mom time, which I needed.  It was nice. I'm going to try and get up to visit her more regularly.

Also going on in Northern California last weekend was the annual ASH conference. ASH being the American Society of Hematology. While I didn't go to the conference, I did got to the conference location and met up with Pat Killingsworth and Gary Peterson.  Both are friends, role models and myeloma advocates.  I'm spoken with them on the phone, on Cure Talk panels and via social media. But this was our first face to face meeting. It was really nice.  They're knowledgeable, funny and supportive . I've borrowed a couple of pictures from Gary.


1 comment:


  1. Well, as mom, it was really nice to have quiet time together. Nothing planned, a movie, breakfast with friends, laid back. I hope we have more time like that also. Very special!

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