Thoughts of Heaven

I am hoping Susan's episodes of extreme fatigue and confusion are the result of Thursday's chemotherapy and will be temporary. The fact that a few hours of rest usually restores her until the next time is reassuring.

Even though we've had nearly two and a half years to get used to Susan being a brain tumor survivor, sometimes the absurdity of her illness rears up and I feel a strange sense of detachment, like I'm encountering her situation for the first time. It happened tonight in the bathroom when I guided Susan to the sink to wash her hands and she asked, "What do I do?" Since disorientation and word loss have become normal for her, we handle these lapses without commotion, frustration, or scolding and give a gentle word of instruction. "First you wet your hands. The soap is there on the left." As she responded, we breezed over the situation as usual.

If all I knew about Susan was that she's a 48-year-old woman who is unable to wash her hands on her own, I might conclude she's at about the lowest state a person can function. But she jokes around, sings songs she learned when she was 12, knows her friends, and remembers that she takes a Fosamax pill on Tuesday mornings and needs to wait 30 minutes before eating breakfast. She prays earnestly, can rightly solve a moral problem and will comfort someone who's hurting, but may not remember what happened 10 minutes ago. Brain tumors are weird things.

Perhaps my sense of detachment carried over when I looked at Susan before she went to bed and was gripped with intense love and compassion for her. I told her I love her so much, sometimes it drives me crazy. She giggled an "Ohh" like she would have five years ago. I said I'm so sorry she has to go through such an ordeal and I wish I could take it away from her. I assured her at least I want to do everything I can to help her and never want her to feel neglected or alone. She consoled me that none of it is my fault; and she knows I'm doing everything I can to help. As we shared a pillow in the dark room, my thoughts turned dark also – and admittedly selfish. I said I don't want her to die. Without hesitation, Susan said she is not going to die but will go to Heaven someday just like I will, and it will be better than anything we can imagine in this life. Her confidence in God means her faith has become a reflex that leaves no room for despair. I love that.

As we prayed together, I thanked the Lord that he gave us each other and that Jesus has conquered sin, death, and hell for us so we don't have to worry about them. I thanked him for providing a home for us with him, forever, that will far exceed our grandest experiences on earth and will make our hardest difficulties here seem meaningless. I told God Susan's healing is up to him, but asked him to give us Heaven's perspective on earth so we might draw others to him and avoid foolishness and disobedience. We were united in prayer.

Tumor unchanged

We were grateful to learn Susan's tumor was unchanged over the past six weeks as we viewed her latest MRI yesterday with Dr Nghiemphu. As I've said before, "unchanged" is great news with a progressive disease like GBM. We suspected she'd have good results since her symptoms have been stable for the past six weeks – and were glad to have that outlook confirmed. Some of her blood counts dipped on week four; and her liver function declined on week five, but she showed robust improvement on yesterday's labs and is cleared for her second dose of CCNU tonight. Susan's fatigue, weakness, and short-term memory lapses persist, which seems to be her operating level for now.

While we ask God daily for healing, strength, and restoration; and she receives prayer weekly with friends at home and at church, we are content in trusting the Lord to heal Susan in his time as he chooses. Meanwhile, God certainly continues to sustain us with his grace, peace and mercy while providing the basics we need for life. We find wholeness, purpose, and joy in releasing the difficulties of Susan's illness and our circumstances to God who is "our refuge and strength, an ever-present help in trouble." (Psalm 46:1) We are ever thankful the One who made us also loves us. He guides and provides on our behalf out of the goodness of his nature and the abundance of his resources. God deserves our trust.

Holding steady

We had a busy afternoon on Wednesday with Susan getting a blood test, a flu shot, and a chiropractic adjustment. Along with her six-week CCNU chemotherapy schedule, she needs blood tests on weeks four and five to make sure her counts are not declining. Her infectious disease physician at UCLA recommended the traditional flu shot now and the H1N1 vaccine at his office later this month when it's available. With her weakened immune system, we decided to do what we can to avoid the flu and will get the vaccines.

Over the past few weeks Susan has not improved much, but thankfully has not worsened. Her greater need for help compared to several months ago required us to bring back a professional caregiver from Sheridan Care part-time. Cynthia worked with Susan briefly last December and returned to our home last week to help with morning activities Mon/Wed/Fri. Susan's situation is so much about transitions, so when increased lifting raised the threat of back problems for some of our volunteer caregivers, it was clear we were getting to the limits of their capacity. With that decision came the acknowledgement of a decline – but that's how it is. Managing a progressive disease like glioblastoma can trouble your emotions. One decline can so easily lead to another, so just one setback can create a sense of dread. But we've found it's much better to live in the realm of the now and the known and avoid the foggy extremes of the what-may-be. Susan is doing okay and maintains her sweet nature and positive outlook. God gives us grace, strength and peace for today, so we'll leave it at that.

During one recent span when Susan was extremely tired and didn't feel well, she slept over four hours on a Sunday afternoon and needed a two hour nap the next morning when I was home with her. After lunch, I put her to bed again and prayed with her before she went to sleep. She said, "I wish I could take the time to tell you why I love you, but I'm too tired…I just love you because you're you and God made you to be very special." And I love my Susan.