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?

Complications persist

This has been a tough couple of weeks for Susan. A nurse at Broadway by the Sea called late Friday to inform me the blood cultures taken earlier in the week had come back positive for e coli – the infection had spread from her urinary tract to her bloodstream. They were starting her with an antibiotic called recophin to be given IV for ten days. A quick call to Dr Nghiemphu clarified that a blood infection can be serious; but it’s encouraging that they caught it early. She feels the recophin will do the job.
I took Susan for follow-up to UCLA yesterday to visit Dr Uslan with the infectious disease team, who said urinary tract infections involving e coli can be an issue for patients dealing with incontinence and they can sometimes travel to the kidneys and infect the blood. He examined her port catheter also since infections can also result from IVs; but the catheter site looks ok and is contained under the skin. He confirmed recophin as the treatment of choice, took another blood sample, and ordered a follow-up blood test for several weeks from now to check her status.

We finally got Susan scheduled for her lumbar puncture (spinal tap), so we were back at UCLA this morning for the procedure. We checked in to the radiology unit at the Ronald Reagan Medical Center so the neurosurgeon could use their fluoroscopy (video x-ray) equipment. The procedure went smoothly – the surgeon collected about 25ccs of fluid. That alone should help the hydrocephalus for now, while the fluid will be checked for infection. Susan was in a lot of pain since all the bed-wheelchair-car transfers aggravated her back injury. She said everything hurt, so I couldn’t tell what was back pain or spinal tap pain or what. I stopped by the oncology clinic to get Susan some vicodin before we headed back to Long Beach. Nurse Nikki was alarmed that Susan wasn’t kept lying down – standard protocol is to lie flat on your back after a spinal tap to prevent any leakage. (What do I know?) Dear Nikki found Susan a bed in the clinic so she could rest a few hours and gave her some pain meds. Such great staff have made the Jonsson Cancer Center clinic a refuge at UCLA when Susan needs help. We’ll be back next week for MRI, doctor visit, and chemo, and we continue to pray for her healing in all respects.

Susan keeps the physical therapy staff at Broadway by the Sea laughing. One day last week as she was ready to walk while holding parallel bars, John prompted Susan to step towards him. She didn’t respond right away, which is not unusual since she sometimes has trouble initiating an action. He prompted her again, but she still didn’t react. When he encouraged her a third time and she just stood there, he became concerned she might be having pain or something. He asked, “Susan, is something wrong?” She gave a droll reply, “Well, I do have this illness...”