NEDenise Has Died

[NEDenise]

Wow, what an outpouring! Denise's brain related symptoms had been worsening over the last few weeks although she was sure it was the dreaded steroids that were to blame. Her balance had become more suspect, she had a few days when her eyes wouldn't coordinate to focus correctly, had debilitating fatigue but most worrying her speech had become not quite slurred, but certainly not normal. She did have the lumbar puncture and cancer cells were found in the meningeal fluid. With that diagnosis, her medical team discontinued the Tykerb and Avastin in preparation for the Ommaya reservoir and a new course of chemotherapy.

She was discharged on the 14th and we came home. She was OK although not really herself through Saturday evening. Sunday she slept almost all day and wasn't able to get up off the couch even to use the bathroom. Monday I helped her get cleaned up and dressed to leave for the hospital, but she was just so weak that when she tried to stand her legs buckled under her. I tried to get her up and carry her the few feet from the couch to the door but when I lifted her up, she was in a great deal of pain and described the experience as if a thunderstorm was erupting in her head. Denise being Denise, she decided she did have the strength to "scoot" across the floor in the sitting position as long as I could back the car up to the front door so we'd only have to try lifting her one time. When she tried to stand at the front door threshold, she pitched forward and must have had a seizure, because I thought for all the world as if she was having a stroke - face went scarlet, eyes wouldn't focus and she started an incoherent babbling. Called 911 and she was rushed to the local ER where they got her stable and air-lifted her to HUP.

After determining that she wasn't having a stroke, more CT and MRI were done Monday night. Docs were going to meet with us on Tue am to discuss next course of action. When I arrived around 10 on Tues. I had already spoken with the neurosurgeon and oncologist briefly by phone. Neurosurgeon took me aside as soon as I arrived to tell me that the previous evenings scans had revealed a large mass at the base of her brain and that she wouldn't likely survive a surgery that wouldn't be able to do much more than relieve the pain that she was in. We decided to medicate for the pain rather than going through surgery and by mid-afternoon she had slipped into a coma. She was transferred to an in-patient hospice floor in a nearby building around 8. There wasn't anything more that they could do for her in the neurosurgery ICU. Hospice was able to keep her comfortable with a morphine drip and some other medication to reduce buildup of mucus and she passed a few minutes after 5 am on Wednesday.

The speed of her decline and eventual death was both shocking and terrifying. Fortunately, her brother was able to get the boys to the hospital in the afternoon when she was sleeping and relatively comfortable, so their last images are of her sleeping comfortably. I'm absolutely astounded at their resiliency and courage. Both are understandably sad and stunned. I feel so bad for them that at 14 and 16 they've had to mature so quickly, having lived with the damn disease hanging over us all for the last 3 years.

As was posted, we are having a memorial service for her on the Friday following Thanksgiving - she wanted to be cremated rather than buried. For those of you who want to call to talk, the number my mom gave out is the home phone and probably not the best way to get a hold of me. Call me at 215-530-7674, that's my cell.

A wave of tears and grief come over me when I read through the wonderful posts that you've added, so I'm not sure I'll be back here for a little while. Rest assured though, that I will check in from time to time if that's OK with you. Until then.......

Ted