Fragile

Adrienne is breathing and resting comfortably, so I decided to come home for a few hours this morning to catch up on work and chores. I thought I knew a lot about this disease but I've learned even more the last 10 days. I'll try to give a more detailed picture of where we're at.

It turns out that as you have more disease, the types of pulmonary complications Adrienne is having are common. The problem is the disease but we can't treat the disease fully until the pulmonary complications are under better control. Since she has had so much treatment, we have few options and what there is often causes more problems than it solves so its a fine balancing act. The hope now is to get the pulmonary issues under control and then try Rituxan to try to shrink the tumors so we can get her onto another trial. Rituxan frequently causes an allergic type reaction and that could be fatal for her, so no one wants to try until her pulmonary status is more stable. She's getting the procarbazine and etoposide daily but these aren't likely to provide significant disease control given the aggressiveness of her disease. Each day, we wait for the chest xray, labs, and her clinical picture to decide what to do. She seems increasingly weak and thin and that is scary for us to watch.

Several people have asked about sending something. You can send to the hospital directly or to the house (please send an e-mail to me at alison95070@yahoo.com for our home address). She can't have fresh flowers or any food. She's eating but on a restrictive diet.

Mentally, things are particularly tough. Things that never bothered her before are creating extreme anxiety, even taking her pills or brushing her teeth. The nurses have been great, giving her as much time as she needs in between things. She doesn't want visitors and won't read the e-mails and comments you all are leaving. Please don't stop writing though. I hope that soon she'll be ready to listen and know how many people love her. Yesterday was the first day she looked at her new iPhone in several days so we're hoping the trend continues. She felt it was okay for me to come home for a few hours this morning.

Again, thank you for your notes and e-mails and phone calls. Sometimes, I feel up to talking and sometimes I just can't. I know you all understand.