Coming home

Susan continues her improvement and will be discharged from the rehab hospital next week, returning home for the first time in over three months. We’re very grateful and a little apprehensive. Susan will return in much better condition than in July, when weakness intensified by hydrocephalus, infection, and steroid-induced muscle loss made her unable to walk and required 100% help with everything. Since I haven’t been with her recently for more than 5-8 hours at a time, I’ll soon learn just how much she’s improved. I’m arranging for care at home to be provided by several sources, including a part-time paid caregiver. Susan still needs 24-hour supervision and help to stand, transfer, walk, and do other basic activities. She may be able to handle the multi-disciplinary therapies with Rehab Without Walls like she had a year ago, but not until she’s able to handle three hours at a time. Their evaluation on Thursday didn’t go well since she’d been up all day, had a full therapy session, and needed to sleep.

Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.

I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”

This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.

“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.

“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.

The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).

This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?

Continued tumor stability, plus a lunch date

Today Susan had her 3rd MRI since beginning her secondary course of treatment for GBM with CPT-11 and Avastin. As Dr Cloughesy compared the scan layer by layer to the one on Aug 27, he noticed no change in Susan’s tumor and was pleased to say the tumor looks stable. In the world of malignant brain cancer, “stable” is a beautiful word. It’s a great relief to see the Avastin appears to be working. With that good news, we proceeded to oncology treatment center for Susan’s bi-weekly infusions. Her blood test today revealed elevated liver enzymes, a signal that her liver is straining to break down the CPT-11. She skipped it this time to give her body a rest. Having only Avastin today reduced our clinic time by an hour and a half and sent us packing by about 12:30. We’re thankful once again for answered prayer and for Susan’s continued improvement.

What to do when it’s lunchtime and you’re at UCLA Medical Center? Stroll down to Westwood! We shared another enjoyable meal together, this time at BJ’s for fish tacos, a chopped salad, and iced teas. Susan’s clearer state of mind recently has allowed for more normal activities and interaction, something we’re both enjoying. She’s much stronger to stand and walk, so transferring from place to place is easier. When we parked this morning, she showed improved initiative by unbuckling her seatbelt, opening her car door, and swinging her legs out. Later when we left, she buckled her seatbelt by herself. These usually are small things, but are significant for her.

Susan did poorly in her neurological quiz this morning and didn’t remember the month, day, date, place, or even why she was there – she said it was for her throat. Such low orientation is frustrating and discouraging for her, but is not devastating. I remind her that she can’t help it, that she’s doing her best, and that she hasn’t done anything wrong. In spite of her cognitive weakness and short-term memory loss, we still have lucid conversations about meaningful things and sometimes not-so-meaningful things – like when Nurse Denise brought Susan some graham crackers while she was receiving Avastin. I opened the package for her and asked, “Would you like some crackers now?” She replied, “Yes, I would.”

I held them and said, “I have an idea. Why don’t I eat the crackers and you can watch me?” “No, I don’t think that’s a good idea at all. Those are my crackers.” I handed them over. After a minute or two, she said, “Would you like one?” “No,” I said, “my wife won’t let me have any.” “She must be very mean.” “Oh, you have no idea. I ought to call Husband Protective Services. She’s brutal to me.” “You probably deserve it.”

Family time

Yesterday, Susan was able to join the family at Randy & Dorothy’s to celebrate Nathan’s, Austin’s and Lexie’s birthdays. Aside from her frequent medical appointments and an occasional stroll to the beach, she’s otherwise been hospital-bound continually since June. Needless to say, it was a joyful and memorable event. It was gratifying to have her back with us to enjoy lunch, birthday cake and gift giving, and just being with the family. She even walked from the house to the car when it was time to go, using her wheelchair as a walker. She was tired when we got back to her room after five hours; but I believe she had a satisfying nap. We’ll be back in Westwood this week for Susan’s six-week MRI and oncology visit, plus chemotherapy. These tumor updates always come with cautious anticipation. We hope and pray for the best, are ready for anything, and continue to trust God for the outcome.

Several things stood out to me this week. Susan seemed more aware yesterday of her situation and need for care than she’s been in a long time. That awareness is wonderful because it makes for more closeness, conversation, and a sense of normalcy. But as I’ve said before, it’s also hard because she has a greater notion of what she’s lacking. She felt bad when she struggled to sign birthday cards and knew her penmanship looked childlike. I told her it didn’t matter – the main thing is that she signed them, a gift in itself. She understood. Later, she apologized that I had to help her so much with even the most basic and personal tasks – she’s sorry she’s like this and didn’t choose to be this way. We had another of those look-each-other-in-the-eyes moments when I affirmed my love for her, that I’m glad we’re together, and that I’ll do anything to help her. Again, she understood. Susan has a precious heart.

On Saturday I attended the funeral of Mary Jo Walker, wife of Will (The Great Guillermo), mother of my life-long pal Kurt and sister Traci, companion of my own parents when she and Will were young couples, and add-on Mom to me an a handful of other teenage urchins at the Walker Bed & Breakfast on 6th Street in Downey. I’m not used the idea of her not being there. I’ll miss the 45-minute conversations we might have when I’d make a quick phone call. Her funeral was a glorious example of a vibrant, fun, and unique woman of God who belongs to the Lord in life and in death. Since fun and humor were a hallmark of Jo’s life, we had a lot of laughs as people shared their stories. I’m so proud of Will and how he expressed his love for his wife of 53 years.

During the meal that followed, I had a magnificent vision of Heaven as I looked across the gathering of family and friends. Everyone had come to remember a dear woman, comfort the family, and celebrate the God of the resurrection and his gift eternal life – our hope. I had these things in mind as I sat there between conversations when time seemed to stop for a moment. As I looked upon scores of friends sharing a meal and animated conversation, I saw people who were connected by spans of time and a genuine bond in Christ. The scene was awesome. No one seemed hurried. Joy pervaded. Laughter erupted. The scene was intensified for me because I was looking at people I hadn’t seen in one, two and three decades. I realized this is partly what Heaven will be like – a great feast, a joyful celebration, and the surprise of seeing loved ones who presently exist only in memory (“What? It’s you!). My vision evoked a pleasure that went deep on many levels, and I thanked God for it. The only thing missing, I realized, was the visible presence of the throne of Heaven and the Lamb of God. He was there, but laying low. Otherwise, He would cast an element of majesty and glory over the feast that we’re not capable of imagining; and the one we came to mourn would be at the table with us. To see a world where God Himself replaces the sunlight and there’s no sickness, death or sorrow? That will have to wait awhile.

Finally, I was impressed to reconsider my way of thinking about Susan’s illness and how I’m praying. A reading from Streams in the Desert last week spoke to me of God being more interested in us knowing Him and growing in character and faith than almost anything else. He’s certainly not concerned about our troubles in the way that we are. While we’re consumed by our circumstances and intensely focused on the outcome, the Living God is there working through those circumstances so we can focus intensely on Him. The difference is infinite. It’s not that we shouldn’t hope for the best outcome and ask for it, but what happens with our hearts along the way is so much more valuable. I have been challenged to adjust my thinking and to trust God differently, because the road of suffering is actually a precious gift that yields a priceless fruit in an unexpected way. And, oh yeah, He’s got the outcome all worked out.