More progress

Fri 10/26/07
We met for an evaluation with a new therapist whose company's in-home treatments integrate physical, occupational, and speech components within one organization and focuses on each patient's goals for rehabilitation. This method makes sense to me and sounds promising.

Sun 10/28/07
Susan has been stronger, more alert, and less fatigued since she finished radiation and chemotherapy. Today we went to church at 9am, and had a family birthday party for Lexie's 18th and Austin's 16th at noon. At 4pm, Susan joined me at practice for our Holiday Chorale at church as I joined with the choir after missing their earlier rehearsals. She watched and listened as we sang, and got absolutely smothered with love afterwards. It was a great day.

Mon 10/29/07
Tomorrow we visit UCLA for a follow-up visit with Susan's neurosurgeon and Wednesday with her neuro-oncologist along with an MRI. Meanwhile, we rest in peace.

I made a sincere apology to Susan tonight after dinner. Adam was invited for dinner at the Johnson's, but came home later and joined us at the table during our meal. When we finished, Susan reminded Adam that he needed to empty the dishwasher like I had asked him to do earlier. As he was leaving for the kitchen, I realized we might miss an opportunity and said to him, "Actually, why don't you sit down for a few more minutes so we can read our devotional?" Susan was insulted that I had spoken to Adam directly and not to her, and told me that everyone speaks as though she's not there – but she can hear everything and, basically said she's tired of being ignored when she's right in the room. While the boys looked on with big eyes, I apologized right away and said I understand, that it would have been better to have responded to her, and I didn't mean to insult her. Then we got on with our devotional.
I apologized again later before Susan went to sleep, saying there was a time when she wasn't able to understand what was going on very well, and so the family adjusted for it by talking among ourselves even when she was in the room. She just wasn't able to participate. so we had adapted around her. For months as we've visited medical personnel, I've had to tell her story for her since either she had no original memory of what happened or she'd forget what she'd learned about it. I've been careful to acknowledge her as much as possible, often recounting events to her for the doctor to hear instead of vice versa. Anyway, just as I realized recently that now it's better for Susan to make her own sandwich with my help than to have me make it for her, tonight she let me know it's time to unwind our adaptation of speaking over and around her. Later as we talked, she said she hoped she didn't challenge me to strongly in front of the kids – I said I was the one apologizing right now, and she was right in what she said. Then we affirmed our care for each other and prayed together before bed. All told, Susan has gotten just a little more sassy again lately, and I'm glad about it. There's a reason Tinkerbell is her favorite Disney character.
Tonight's reading in Streams in the Desert from Ephesians 2:6 relates how we are seated with Christ in the heavenly realms, and it struck deeply with me. If God's people are seated with Christ (and we are), God intends for us to stay there – always – not just on Sundays, and not just when we migrate back around for greater intimacy with Him. Too often, we give in to worry, anxiety, and fear over our circumstances. If the eye of a hurricane is so peaceful as to allow a child to sleep in it, there's a place of peace and rest in the Lord right next to life's swirling winds. I thought of the phrase "rest in peace," and it took on new meaning tonight. Those words, most closely associated with death, are actually words of life for us. While Susan and I don't want to be without each other, we're not afraid of death, so we will rest in peace before we die. Right now.

Tue 10/30/07
We met with Susan's neurosurgeon Linda Liau today for a post-op exam at UCLA. Dr Liau said Susan's incision site has healed well after two resections and is pleased with her progress in the two months since surgery, commenting on her obvious improvements and greater alertness since our last visit. She said the worst of Susan's treatments is over – the dual radiation & chemo is usually the most draining part of treatment. Actually, it wasn't any worse than any of her other complications, for which we're thankful. Dr Liau also told us to plan on monthly 5-day chemo treatments with periodic MRIs for the next year or so in hopes of keeping her tumor at bay.
Regarding the brain cancer vaccine Dr Liau is working on, she's confident Susan will be eligible for the vaccine in one form or another in the coming years. Perhaps the current version would be FDA-approved, or once she is breast-cancer free for three years in 2009, she would be eligible for one of the improved versions in a clinical trial.
We will be lifting Dr Liau in prayer, who had recent surgery herself for breast cancer. It was her mother's own breast cancer and metastatic brain cancer that led to her death and inspired Dr Liau to her work as a malignant tumor brain surgeon. She said they discovered it early, and like Susan, she won't need radiation or chemotherapy, so we were encouraged for her. We pray for her complete healing for a long and joyful life.

Wed 10/31/07
We had a truly encouraging MRI result at today's visit to UCLA and Susan's neuro-oncologist. One bit of tumor across the midline that was inaccessible to surgery is gone, and another area nearby appears not to have grown at all! We thank God who is almighty and good, and we're grateful to everyone who has been praying.
Susan is back on temodar chemotherapy, a new routine that will be five days each month for at least the next year or two. Her dose this time is a little more than twice as before, and will be increased again if she tolerates the higher dosage. She'll also have monthly blood work and bi-monthly MRIs as Dr Nghiemphu will monitor her progress.