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.

Preparing for radiation, compassion at the DMV

Fri 08/17/07
We had an appointment with Susan's radiation oncologist, Dr Puthawala and his team at LB Memorial. She'll return next week to re-do the CT simulation that is needed for radiation therapy. The simulation is used to plan her treatments with Susan's brain scan, the oncologist's prescription, and the physicist's programming to fine-tune the equipment before radiation begins. Her plans from July need to be redone following her 2nd surgery.
Compassion at the DMV! We decided to get a temporary handicap placard since Susan qualifies due to loss of sight and needs to walk with assistance. At the DMV (you know, staffed by robotic agents weighed down with red tape), I left Susan in the car to enter the labyrinth, and discovered at length that she'd need to cancel her driver's license in order to receive a placard for visual impairment. That makes sense – but also involves a weighty decision. I went out to discuss it with her and allow her to decide for herself. She knows she can't drive right now and can re-apply when her sight returns, so she agreed to cancel it. When I brought her inside to sign forms, a clerk showed true compassion in expressing sorrow for our situation – he apologized repeatedly. Then, as we waited in a long line for Susan's state ID card photo, he left his station (and his customers), and led us to the front of the line. The people we bumped were gracious and understanding also. Thanks to Russell at the Long Beach DMV – a caring human being who softened a bureaucracy.

Sun 08/19/07
Susan has had recurring pain in her scalp as nerve endings re-attach near her incision. Vicodin helps.
We attended some family events involving both sides of our family, a Romberg wedding reception on Saturday and a Joeckel wedding on Sunday. We enjoyed the social atmosphere, love & support.

Hospitalization & discharge at UCLA

Tue 08/14/07

A recent entry in Susan's journal: I'm encouraged as I look forward to what God has to show me about his love and faithfulness!

Wed 08/15/07

Susan said, "With all the prayers by all these people I should become someone like Mrs. Billy Graham by now. But we know God does things differently than we think. Look at what He did with Jesus, and how He had to die. He was not just humiliated, He was rejected."

Susan's journal: God continues to teach me about my commitment and responsibility, first to Him, then to others. I pray for grace to follow His commands and divinely love His people.

Thu 08/16/07
Susan has had several other tests during this hospitalization focusing on a possible 2nd stroke and the source of pain: an MRA (magnetic resonance angiography) of brain and neck, an ECG (electrocardiogram) with cardiac ultrasound, and a CT (computed tomography) angioplasty. These were used to analyze her circulatory system around the heart and brain without being invasive – the results showed normal arteries and blood flow with no plaque or blockage. Thanks to God.
Regarding stroke, there is a small area of restricted blood flow near the mid-brain that was not evident on a previous brain MRI, "downstream" from the stroke area in her occipital lobe from 07/03/07. It could be the result of a new event, or may have been there since July. It's small enough to have been missed on previous MRIs and small enough not to pose a problem. It was not likely the cause of Susan's pain this week and obviously was an important issue to understand and rule out. She's on low-dose aspirin for stroke prevention.
Regarding pain, doctors believe Susan was tapered too quickly from decadron, a powerful steroid that counters brain swelling. Most patients are on it several weeks prior to surgery and benefit from a 3-day taper. Susan had been on it for about 6 weeks prior to her 2nd surgery; so the normal taper schedule resulted in a swelling rebound with intense pain. She's back on decadron with a 4-week taper and doing better.
Regarding tumor, here's the really good news: Dr Liau took out about 95% of it. I've learned to be cautious with these estimates; but she got almost all of it on the left side, leaving only the small inoperable portion that had crossed the midline to the right. The goal is accomplished – less tumor means better outcome of radiation & chemotherapy.
Susan was discharged on Thursday and is home again resting comfortably with medications for anti-inflammation, anti-seizure and pain. She's in good spirits, and is getting pretty good again at deadpan sarcasm. Before we left the hospital, she remarked about "The Price Is Right" on TV: "Now there's a real low point in a person's life when they don't spin the wheel around completely. Humiliated on national TV. And I think I've got problems."

Here are some of Dr Liau's note from surgery on 08/06.

• Pre-Op Diagnosis: Left frontal brain tumor; Post-Op Diagnosis: Left frontal glioblastoma multiforme
• Operation: Left frontal craniotomy with resection of primary brain
• Complexity: This was the case of high complexity given that the patient had already had previous surgery for her left frontal brain tumor. There was significant amount of scar tissue from the patient's previous surgeries as well as subfalcine herniation of the tumor across the midline. The tumor itself was noted to be very vascular; and this combined with its location just millimeters away from eloquent language cortex made this a very challenging case of high complexity. This case took an extra 2 hours.
• The BrainLAB intra-operative navigational instrument was registered using anatomical and surface landmarks...The brain was noted to be quite swollen due to compression from underlying brain tumor...gross tumor was encountered which was noted to be necrotic, grayish purple, and very vascular...tumor tissue within the left frontal lobe was clearly abnormal by virtue of its color, consistency, and texture were carefully resected...The intra-operative MRI scan showed a large left frontal resection cavity, with gross total removal of the enhancing tumor in the left frontal lobe. There was a small amount of residual tumor crossing the midline to the right, but it was felt that this area of tumor was too deep to be resected safely. There was no evidence of any bleeding, infarct, or any other intra-operative complications.

We celebrate God and give thanks that so much tumor was removed without complications or deficit to Susan, a direct answer to prayer. The fact that tumor was so easy to identify from its abnormal appearance is a marvel. We truly are grateful to Dr Liau for her excellence and care, and we thank God that he made the advantages of UCLA's technology available to Susan.

Complications

Mon 08/13/07
Susan's pain increased somewhat each day on Sat & Sun along with greater fatigue. Her pain eased with Vicodin; and she had more frequent, longer naps than before.
She awoke at 2:30a with severe pain, crying, asking why it was happening. I gave her Vicodin and called UCLA Med Center. I thought the fact that we had weaned her off an anti-inflammatory called Decadron might have resulted in more brain edema (swelling). While that's not clear, the resident neurosurgeon on duty suggested she come in for another MRI.
When a 2nd Vicodin didn't relieve Susan's pain, we left for UCLA at 4:00a. They gave her morphine in the ER which took care of pain and allowed her to rest. She had a CT scan and an MRI during the morning and was admitted to the 7th floor neuroscience unit about 5:00p.
Thankfully, the scans showed no bleeding or severe swelling. However, they did reveal Susan had a sub-acute or mild stroke in the middle of her brain. Although not a full stroke with the classic symptoms, blood supply was cut off to some degree. She had several neurology exams as the team wants to rule out a cause other than cancer or swelling. She is slightly more confused about her general environment and what's going on.
Susan remains under evaluation for the causes of pain and stroke with treatment to follow.

While we continue to navigate the difficulties of Susan's situation, I am reminded that lamentation is the most powerful form of worship. Here is what the prophet Habbukuk has to say:

Though the fig tree does not bud and there are no grapes on
the vines, though the olive crop fails and the fields produce no food, though
there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in
the LORD, I will be joyful in God my Savior. The Sovereign LORD is my strength;
he makes my feet like the feet of a deer, he enables me to go on the heights.
(Hab 3:17-19)

Lord, have mercy on us.