A transitional week

Susan resumed the help of a full-time, paid caregiver last week after months of having weekday care by our amazing network of friends and relatives. As her physical demands have increased recently, we had Cynthia from Sheridan Care come in three mornings a week. Then with concern for everyone's safety, we expanded it to five full days. These are days of living on grace – the grace of volunteers who helped Susan so well again for months, and the grace of Susan's parents who are providing the full-time care. I'm also grateful to our sister-in-law Dorothy, who worked hard organizing the volunteers amid lots of schedule changes. Cynthia emigrated from Belize in the 1980s and brings a terrific balance of expertise with a light-hearted nature and Caribbean accent. True to our experiences with Sheridan Care, her intense focus on Susan's needs gives me great peace of mind. They hit it off during a brief stint a year ago, so Susan enjoys having Cynthia's help again.

People often ask how Susan is doing with the complications she's had along with her brain cancer treatment. Tumor-wise, the one MRI she's had since starting her new round of chemo this fall showed no change, so no growth is a good thing. Her next scan and oncology visit will be Thanksgiving week. Regarding January's brain hemorrhage, the blood clot and its effects have continued to shrink. Also, she's had no infections lately, no build-up of fluid that leads to hydrocephalus, and no brain swelling. Each of these has been a serious issue in the past, so it’s a relief to have them laying low. We have begun tapering her off of steroids again, ramping down from 4 to 3mg of Decadron in October and migrating to 2mg per day this week.

Susan’s vision has been troublesome since her occipital lobe stroke in 2007. Aside from the miraculous event that summer when her ability to see color was restored during prayer, her right-side blindness persists. After she complained that her eyesight seemed to be getting worse, we ordered an MRI of her eyes and optic nerves in September. Thankfully, the scan ruled out any tumors or other physical damage in those areas. Our next step was a visit last week with her optometrist, Dr Eric Ikeda. During the exam, Susan had considerable difficulty with aphasia (word-finding), something that happens frequently. It seemed like every letter on the chart was an X. Unfazed, Dr Ikeda continued the exam using other techniques and gave us good news – her vision itself is not damaged. She's had some visual change since 18 months ago, but only what's normal for her age and not enough to require new glasses.

Susan’s aphasia and Dr Ikeda's neurological specialty provided insight for us. When she has trouble seeing something, it's partly because her brain struggles to attach the right symbol or language to the image her eyes are seeing, so she has trouble recognizing it. She has trouble “seeing” even though her eyes are okay. In other words, fatigue leads to brain overload that makes her not see well. Even so, Dr Ikeda noticed how well she’s learned to compensate for her loss of visual field by scanning frequently from side to side. We’re glad to resolve the question and gain understanding about her vision. In spite of a frustrating condition for her, Susan handles it like a trooper.

After recently reconnecting with Morris Chapman, a long-time friend from my days at Maranatha! Music, I played his ­Gospel Praise CD on Sunday afternoon. I enjoyed once again how well Morris evokes a spirit of worship, especially on that album. Susan was caught up in it also as she reclined in the den. She asked for more “dark brown” music, so I went for it with one of Carlton Pearson’s Azusa albums. When I turned the volume down a bit so the neighbors wouldn’t start looking for a tent meeting, she wanted it louder. Ok, right on. Then she asked if people were going to sing over her and pray. As I prayed in my spirit, I asked Susan about what she was experiencing. She said she’s trying to listen to God and obey what he says. I’ve learned not to deny the Holy Spirit an opportunity to move – but Lexie and I needed to leave for a final Holiday Chorale rehearsal, so I called our neighbor and prayer partner Melanie Gunsolus. She was willing to come over right away and pray.

Was there a great accomplishment? Perhaps there was, although I didn’t notice any visible healing. Maybe the God of mystery just wanted to engage some of his children in a call and response – an act of obedience or just some interaction. While we continue to pray, I’m reminded that to God, the process is more important than the result. We are pilgrims on a journey.