Spectacles

Amazingly, it’s been five years since Susan got the new glasses that followed visual loss brought on by her brain tumor and stroke. We visited the low-vision specialists at the Southern California College of Optometry at that time and got her fitted for a pair of single-vision lenses. Later, we discovered that a doctor at our usual optometry office specializes in low-vision and neurological patients, and is in fact an instructor at the college. Dr Ikeda arranged for Susan to have vision therapy in 2007 and 2008; but it had been a while since our last visit. 

We fixed that with eye exams a couple of weeks ago. I stayed with Susan for her exam so I could inform Dr Ikeda about her recent health history and other in details. Her aphasia hasn’t improved much and makes it a challenge to communicate. While I wondered how we’d manage when it was time for her to read the eye chart, my concern was realized. As hard as she tried, she got stuck on J. She saw an A said it was J. So was F and D and so on. “That’s a J,” she called R, frustrated it wasn’t what she meant.

Dr Ikeda’s experience with neuro-impaired patients quickly kicked in with a surprisingly simple remedy. He asked her to draw each letter in the air as she saw it. It was perfect. She saw a G and drew a G, even though she still said it was J. No matter. She moved down the chart, drawing each letter on an invisible tablet as the type became smaller and smaller. More surprising than the language remedy is how well she sees. I knew this already by the crumbs she finds on the table so easily, but her exam defined it. It was exciting to watch her work the eye chart so well.

Her visual field test confirmed the visual loss caused by her stroke – her right visual area is just wiped out. She’s done a great job learning to accommodate and has maintained what she learned in vision therapy four years ago. She adjusts by scanning horizontally, moving her eyes and head more than the rest of us need to.

Her new glasses have an updated single-vision prescription; plus Dr Ikeda added a prism on the right side to pull in more visual info to make up for her peripheral loss. The prism bothers her – but she’s getting used to it. She’s worn her new glasses all weekend after refusing them on Thursday and Friday.

We’re thankful for new glasses to replace what I thought in 2007 might be the last pair she’d ever have. We’re thankful for Dr Ikeda’s great help and my company’s great vision insurance. We’re thankful for our abundant life, for our kids, and for the goodness of God.

We'll repeat a blood test this week and will most likely begin Susan's next 5-day course of Temodar chemotherapy if her labs look okay.

Grieving and grateful

Susan’s mother passed away several weeks ago. Helen died peacefully from an aneurism and brain hemorrhage several days following surgery for a hernia. Her passing was as unwelcome as it was unexpected. It’s interrupted the rhythm of our lives the way it does when anyone close to you is no longer there. As the reality of her death sinks in, we continue to be attended by the peace in knowing she didn’t suffer or linger, knowing she’s in heaven because she trusted Jesus for her salvation, and knowing that seeing her again is but a matter of time. Still, we grieve deeply and miss her.

So many people have asked how Susan is doing with it. Of course, they’re concerned. It’s hard on anyone to lose a parent. Helen was the center of the family in many ways. But in her mother, Susan has lost the support that Helen provided, so much greater since Susan’s brain cancer diagnosis. If you wonder whether another tragedy has pushed Susan beyond her capacity to bear it, it hasn’t.

Susan thinks about Heaven all the time and is ready to be there herself. I think being a brain tumor survivor who knows the briefness of life gives her a better perspective than most of us. Susan is sad and misses her mom, but is beautifully confident she’s with the Lord. She knows she’ll see her again. I love her faith.

We witnessed God’s presence with us during the terrible sadness at Helen’s bedside when she was withdrawn from life support, her brain no longer active or able to sustain her breathing. With over twenty loved ones around her, we blessed her, prayed, sang a hymn, and cried together as she passed from this earth.

I was impressed with a big thought in that ICU – this is not how it’s supposed to be. We belong to each other, mothers and children, family. That’s forever. We shouldn’t have to say goodbye like this. Then a bigger thought came – this is why Jesus died and rose again. God knows this isn’t how it’s supposed to be, a fallen world diseased by sin and death, so he fixed it for us. That’s why we’re hopeful in our sadness. His gift of life has made all the difference against our biggest threats – I’m sad I don’t spend more time being aware of it.

We’re thankful that Susan’s own hospital visit a couple of days before Helen’s surgery was not a more serious event. That Tuesday, the day after her fifth dose of Temodar and Accutane, she developed a severe and welted rash over half of her body, an apparent drug reaction. When the Prednisone and Benadryl I had on hand didn’t relieve it, we went to the ER at UCLA that afternoon. It had been almost exactly two years since our last ER visit. They gave her more powerful meds and released her after several hours. She was better by the next evening. Whether Susan reacted to the chemo or the Accutane we don’t know. Dr Nghiemphu recommended we stop Accutane and resume Temodar in September.

We’re also thankful Susan’s brain tumor appeared stable once again after this week’s MRI. Her scans are regularly scheduled reminders of the tumor that remains in Susan’s brain. It’s an area the doctor watches carefully that spans the left-front toward the center. Given the choice of scheduling her next MRI in either one or two months, we opted for two and will return in November. The fact that Dr Nghiemphu gives us that choice is compassionate and empowering. She feels comfortable with a longer span, so we do. But if we want an MRI sooner, we can get one. I like having the choice and respect Dr Nghiemphu for providing it.

Susan is feeling pretty well. She still mixes up words and gets fatigued, but she’s gained strength and seems more resolved than ever to be as independent as she can. She laughs easily and knows more songs from memory than most karaoke machines. Susan is sweet, tough, and lovely. We’re grateful for all the expressions of love and sympathy we’ve received.