Holding Up

Following a lingering headache, another episode of nausea and vomiting on Saturday and weekend phone calls with a neuro-oncology fellow at UCLA, Susan was put back on Decadron, the anti-brain-swelling steroid. Because of its side effects, it's one of those drugs that as badly as you need it, then you need to get off of it. After finishing a careful, three-month taper in June, resuming it was a reluctant but necessary step – and she's doing better this week. We're already stepping the dose down from 8mg to 6mg and may be at 4 by the end of next week unless she worsens. The fact that she hasn't had a big cognitive slump by now is a good sign and gives us hope of a favorable PET scan result in the coming weeks.

I've written before about our nighttime talks when we have beautiful, lucid conversations before going to sleep. I don't know if it's the dark quiet of our bedroom, the lack of distractions, or the peace of our prayer time, but when we talk sometimes the effects of Susan's illness seem to fade away. We could just as easily be having a conversation five years ago.

Last week's MRI was the first troubling one we've had in over a year, so one night in bed last week I asked Susan how she was doing and whether she was feeling a bit discouraged. She admitted she was, and a bit scared, too. I asked her about that. She said she's not afraid of dying, but she's afraid of losing all the progress she's made. She said she's going to do her best and keep trying. That's the answer of a fighter who's a long way from giving up. I told Susan how thankful I am for how God made her – a person with a positive disposition and an ingrained sense of commitment. Her hard-work ethic means she does what needs to be done in spite of how she feels. Gotta love that woman.

We also talked about Heaven and how amazing it will be to see, hear, and touch a world our souls have longed for, and we imagined what it will be like to be with the Lord in person at last. I told Susan I'd been thinking about how the nature of our faith and hope in God will change when we go to Heaven. What happens when we don't need to believe any more because we're looking right at Him? What happens to such a hope when it's fulfilled? We wondered about that. Even the word "fulfilled" seems lacking – I have a sense that what we'll get in place of our hope will be much, much more. Someday….