Difficult adjustments on the journey

Mon 08/20/07
Confusion & fear during the night – as Susan visited the bathroom around 4am. I was alarmed not that she took a while, but that she came out weeping and scared, saying she forgot what to do. As I comforted her, I learned she did not forget how to do some basis tasks, but somehow thought she needed to pay for supplies before she used them. What a sweetheart – she didn't want to break any rules. I assured her that she can trust her own judgment and that her conscience will help her do the right thing.

We read in our devotional about Jacob wresting with God in Genesis 32:24. His experience transformed him as he became an overcomer during crisis, a time when God "pressed down on Jacob to press his old life from him...If God has called us to His highest and best, each of us will have a time of crisis, when all our resources will fail and when we face either ruin or something better than we have ever dreamed." We rely on God for His help.

Thu 08/23/07
Susan needs a lot of rest these days. Her periods of sleep typically are followed by waves of intense pain, evidently caused as increased blood flow to her head while lying down floods the nerve endings that are re-attaching near her incision. We're counting on this state passing soon. She's usually good for several periods of good energy during the day.
Wednesday was a landmark day for suture removal and a neuro-oncology meeting at UCLA followed by CT simulation in Long Beach. Getting staples & stitches removed means she can have an honest hair-washing on Friday, her first in 20 days. Today's appointments precede Susan's chemotherapy and radiation treatments that will begin next week, occurring simultaneously since her tumor is grade IV glioblastoma. The day's too-full schedule prevented usual rest and made Susan extremely weak by the end of the day – she could barely lift her feet to get out of the car.
Susan's six-week, Mon-Fri radiation treatments will happen at LB Memorial's radiation oncology unit under Dr Puthawala, who will coordinating treatments under UCLA's Dr Nghiemphu. Advanced radiation technology targets tumor tissue while avoiding vital areas, while side effects range from mild to severe skin burning and peeling, swelling (edema) and nerve damage.
Her 42-day chemotherapy is a commonly-prescribed drug called temodar (temozolomide) taken orally each day. It's effective at penetrating the blood-brain barrier, while common side effects include nausea, weakness and fatigue, dehydration, and low white blood cell counts, which increases the risk of infection.

We continue to wait on the Lord for healing and strength during our difficult journey. It feels like we're settling in for the long-haul, slogging it out in the "new normal" life with its uncertain outcome. Pain and fatigue are daily struggles for Susan along with the annoyance of memory deficits and mild to moderate confusion. Even so, we know we are being carried along in God's gracious hands with the support of he Holy Spirit and upon the prayers of countless caring people. I thank God for grace as my strength and devotion waver and I realize once again that I am really just a fragile sinner. Hope sustains us in that we know everything will be ok. Life is hard – but God is good.