Sunday, July 27, 2008


Last week, we asked the trial coordinator to find out if Adrienne can do some of the monitoring and treatment for the clinical trial at City of Hope when she goes back to school on September 1. The answer from the drug company was that she cannot. The trial will be opening at UCLA and she can transfer there, but it could be several months since they are in the early stages of setting up the site.

If the trial is working, obviously Adrienne has to stay on it but that would preclude her from going back to CMC. After some investigating, we think Adrienne might be able spend a semester at UNLV and then finish her last semester at CMC when the trial opens at UCLA but there's still some work to do to figure out how that might work. We've been hopeful that the trial is working since her symptoms had disappeared, but there is some new wheezing the last few days. For now, we're in a holding pattern until she has scans in a few weeks.

Adrienne generally feels better on this trial than when she's on chemo but still not 100%. She sleeps almost every afternoon and looks very tired much of the time with circles under her eyes. We asked that she get regular Aranesp and Neulasta shots but there seems to be an issue getting the insurance to approve it unless her counts are really low. I need to work on that this week because we don't want to wait until she's feeling really lousy to get the shots. It seems like it's always something.

Adrienne still has some pain in her foot and is walking with the boot. She had an MRI last week but no word yet. She also saw a neurologist to figure out the weakness in her leg. The doctor is pretty sure that it's a nerve problem due to radiation but she needs more tests to be sure and there may not be a way to fix this problem. Again, we'll know more about all of this in a few weeks.

A few people have asked about my shoulder. Yes, it's the right one. I also may have a pinched nerve in the elbow but I'm going to wait until the shoulder surgery is done to address that problem.

We've had a lot of visitors the last few weeks. As far as we know, no one else is coming to visit so we'll try to relax for the rest of the summer and take things a day at a time.

Monday, July 21, 2008

Back on Track

Adrienne started cycle 2 of the Vidaza/MGCD today and is feeling fine afterwards. After just three Neupogen shots last week, her white blood count was more than 19,000. I asked if there had been a mistake earlier in the week but, apparently, someone with healthy bone marrow will respond this way to the Neupogen shots. Yeah for Daniel's marrow, which is much healthier than Adrienne's ever was. Adrienne sees the neurologist tomorrow so hopefully we can start to get to the bottom of the weakness in her right thigh. The foot is healing slower than we hoped but she is getting around quite well in the boot.

I've been having trouble with my shoulder for some time and will have rotator cuff surgery in September. I wanted to wait until Adrienne goes back to school so I can get her settled in before I lose the use of my arm. I'll be glad when the rehab is done.

Monday, July 14, 2008

Day 1, Cycle 2 -- No Go

We arrived at the clinic bright and early today happy that the traffic wasn't bad. Adrienne had her labs drawn, saw the doc, looked at Friday's chest xray that shows possible slight improvement and no new disease!!!! (okay so we have low expectations), Adrienne's ready for chemo, and then ... the trial coordinator let us know that Adrienne's ANC was less than 1,000, too low for treatment. And now we don't even get a week off because Adrienne has to go in each day for GCSF shots. I could do it at home but we have to order injectables through a mail order company and couldn't get them for several days.

Overall, Adrienne is feeling very tired and her stomach still bothers her from to time but, as usual, she looks wonderful.

Curt's family is going back to Seattle tomorrow after a great visit. I think we'll be happy to skip the Strip for a little while, at least until Adrienne's aunt is here the weekend after next.

Monday, July 07, 2008

There's no place like home

We've been running here and there so much that it's especially nice to be home for the foreseeable future. We'll have some visitors over the next few weeks, which is fun, but I think we're all happy to be sleeping in our own beds. Curt's brother and sister are coming this weekend and my sister and her family are coming later this month.

Adrienne had labs today and her counts up are a bit so she doesn't need a transfusion. She's still really tired but things are moving in the right direction. She got a shot of Aranesp so hopefully that will help over the next few weeks. She'll get a chest xray on Friday just to make sure the tumor in her lung isn't getting out of control before starting the second cycle of the trial next week. She'll have scans in mid-August.

Joyce's funeral was nice. They put together a slide show from when she was a little girl until her death. She even wrote her own obituary and selected the flowers and music before she died. That's Joyce.