Pushing through a bumpy week

Sun 05/18/08
We returned from a weekend in the mountains at our family cabin, the boys and I doing our annual raking and leaf removal for fire safety while my mom took care of spring cleaning and making meals for us. We had good family time with work, relaxation, and lots of jokes. Susan did well at the 5800’ altitude in a good test run of our trip next week to Denver for our niece Heather’s wedding. Her surgery site is healing well. Sitting outside on Saturday at dusk, I had an up-close visit from a lone coyote who was ranging among the cabins probably looking for a meal (perhaps a tasty family pet) and walked past me in the trees about 40 feet away. It was a good-sized, healthy-looking animal and made me glad we take precautions in keeping our dogs secure. It reminds me of when we went to the zoo and I spotted a leopard. No I didn't – they come that way.

Susan and I sat on the screen porch for a while this morning watching the blue jays and hummingbirds at their feeders when I asked how she’s doing with her recent tumor re-growth. She said she realizes the outcome is uncertain and she doesn’t know how long she has to live. She said she wants to live, but has been troubled by not knowing what will happen. It’s been a tough adjustment for both of us as we’re facing the hard facts of brain tumor progression after having months of stability. She’s going to keep doing her best to function in every way she can and trust God for the future. We’re glad He’s in control, especially since it’s clear we can control so little ourselves.

Mon 05/19/08
I walked into the kitchen this morning after Susan had been up at 5:30 helping Austin get ready for school and could tell she was having a tough start. She was staring into the open refrigerator and couldn't remember how to find the milk. She said she feels disconnected from real life, like she’s not herself anymore and she’s slipping away. Even the activity on talk radio seemed to her like it was happening in another world. These were startling words for me to hear and made me think we need to move more quickly to start her chemo or at least have another MRI right way. I spoke to Dr. Nghiemphu who suggested we go after brain swelling by increasing her decadron to an additional 4mg in the morning for a total of 12mg daily. If she doesn’t improve, we’ll take further actions. Thankfully, she was feeling better by the afternoon.

Tue 05/20/08
We had another follow-up visit today with Susan’s radiation oncologists at Long Beach Memorial who administered her radiation therapy in October. Dr. Syed was concerned about her recent tumor progression. While he deferred to UCLA’s protocol of CPT-11/Avastin chemotherapy, he offered some alternatives like gamma knife radiosurgery or pursuing another actual brain surgery with Gliasite implants for internal radiation therapy. Once again, the brain tumor patient and caregiver find themselves in a tenuous spot – we’re medical novices trying to negotiate decisions offered by well-meaning experts in a complex, life-and-death situation. In talking to Susan, we realized a radiation oncologist will turn to his toolbox (radiation therapy) for his preferred treatment. Is that enough? We feel the neuro-oncologists at UCLA have a deeper toolbox (including radiation therapy), not to mention the fact that they treat brain tumors exclusively. We’d rather keep Dr. Nghiemphu and her team in the driver’s seat.

Today we learned Ted Kennedy was diagnosed with a malignant brain tumor following his recent seizures, bringing the brain cancer world into the international spotlight. We certainly identify with what he and his family must be experiencing this week – the weight of the news and the beginning of the journey. What’s weird – when I heard the news I thought how tragic, how devastating, almost not remembering what we’ve been going through for 11 months. The whole thing is a head trip.
Tonight I talked to my brother Jon in Colorado after a bit of a lapse since our last phone call. I found myself summarizing Susan’s latest developments with a bit more perspective than I’ve had recently – the tumor growth, the failed chemo attempt, the port catheter, our hope the new treatment will work – and if or when this second line of treatment doesn’t work, the next steps involve more creativity and uncertainty. Ultimately, if she’s going to survive, it’s up to the Lord. We keep praying.