Diary of a Brain Tumor Patient's Wife

Dec. 30, 1998

Renette Davis

Paul had an MRI at the U of C today. After the MRI we went to see Dr. Nicholas, who looked at the films with us and compared them with those from the last MRI. The tumor does appear to be growing, particularly in an upward direction. I really wasn't too surprised because it has seemed to me that Paul's symptoms have gotten quite a bit worse this past month.

Dr. Nicholas said the tamoxifen doesn't seem to be working, so he suggested that Paul stop taking it. Paul's platelets are still low (73,000 today) so he still doesn't qualify for a clinical trial at U of C, but Dr. Nicholas said he would call some of his colleagues at places like MD Anderson and UCSF to see if they have anything that Paul would qualify for. He said sometimes patients can go to another part of the country for an initial treatment and then their local doctor can do all of the follow-up treatment.

He's also looking into getting thalidomide on a compassionate use basis. That has to be approved by several committees at the hospital because even though thalidomide is an approved drug for some things (like leprosy) it has not been approved for cancer. However, there has been a lot of discussion lately about the possibility of using anti-angiogenic drugs, like thalidomide, for cancer. Those are drugs that prevent the formation of blood vessels.

The theory is that if the tumor can't form blood vessels it won't get nourishment and will shrivel up and go away. There is a clinical trial someplace using thalidomide, but it's for newly diagnosed glioblastomas, so Paul wouldn't qualify for it. There's no guarantee that the hospital would approve thalidomide for Paul, but Dr. Nicholas said he would be willing to try. He also said he thought low platelets might be a problem with thalidomide, so he's going to check into that.

Dr. Nicholas said he should get back to us in about a week, but for the time being Paul will not be getting any treatment, other than Decadron for the swelling and Phenobarbitol to prevent seizures. I suspect that means even more tumor growth. Paul has been easily confused lately, and often gets upset when he has difficulty doing things on the computer, turning on the stereo, making phone calls, etc., so I don't feel comfortable leaving him by himself like I did a month ago.

I've decided I'm going to take some of my family medical leave and see how things go. I can keep my health insurance by paying my portion, and that was one of my main reasons for wanting to continue working. We've been managing ok financially on our reduced income without using any of the home equity line of credit that I arranged in September, so we have that to fall back on now.

The personnel officer at the library said I can take the family medical leave on an intermittent basis, so if Paul is doing better, or if someone comes to visit for a few days, then I can go into work. That way I can keep my feet wet and bring in a little extra cash now and then. I assume it will also allow me to stretch the leave over a longer period of time if I need to.

They have been so supportive through this whole thing, and I am really grateful for that. My boss has basically said I can come in and work whenever I want to and take off whenever I want to. The main thing I'm doing now is working on "problems" that have been sitting on the shelves for 6 months to a year, so it's the kind of work that can be done going in now and then. I couldn't ask for a better situation as far as work goes.

Continue to: Jan. 2, 1999

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Created: June 7, 1999
Last updated: July 20, 2010