Two years in brain tumor world

Friday marked a peculiar anniversary, two years since Susan's CT scan at Clearlake that followed accumulating symptoms, revealed a mass on Susan's brain, and ushered in a series of events that have changed our lives. I'm thankful to say "our lives" since Susan is still with us and doing wonderfully. She has outlived the average 8-12 month life expectancy of glioblastoma multiforme patients by a merciful margin.

Over the past two years, Susan has been through several swings from life-threatening crises to the relative calm of the chronic mode. On June 28, 2007 she had a surgical biopsy that offered the first occasion to type the tumor. July 3 brought Susan to ER with seizure activity and a declining condition. On July 4, she had emergent brain surgery to de-bulk the tumor and awoke the next day in ICU with the effects of a stroke and in a precarious state. Death was near for Susan, yet came no closer.

The ensuing months brought initial rehab, a second brain surgery, and a string of hospitalizations for drug reactions, fungal meningitis, and hydrocephalus, plus her initial course of radiation and oral chemotherapy. The second half of year one allowed for huge improvement with maintenance chemo and a variety of at-home therapies until the tumor advanced again in the spring of 2008.

Year two introduced Susan to chemo infusions every two weeks and the return of hydrocephalus, plus increased physical and cognitive weakness, a broken vertebra due to a fall, and three months in a rehab hospital. In spite of improvement that continued through the autumn, more complications would develop, including her brain hemorrhage in January. Right now I truly can't recall how many times Susan has been hospitalized. Without checking, I think it's probably 10 or 12 inpatient visits. Meanwhile, Susan has improved at every level while remaining free from brain tumor progression. We thank God.

Our children have adjusted remarkably well to their mother's illness that has taken her from her fully functioning role to a brain tumor patient in critical condition with fitful recoveries and many hospitalizations. We admire how Lexie, Austin, and Adam have joined us in trusting God for Susan's future and how quickly they stepped up to maturity in filling the gap left by their mom's inability to manage our home like she did before.

In prayer last night before bed, Susan once again submitted her life to the Lord and accepted his plans for her, whatever they may be. She looks forward to being in Heaven and told God it's the most wonderful thing she can imagine. With her 30-year Paramount High School class reunion approaching on July 18, she has expressed excitement about seeing her friends again, as well as concern about those same friends seeing a lesser version of her. I understand her feelings and certainly see her point. I also expect her friends will encounter a greater version of Susan as a two-year malignant brain tumor survivor, made lovelier by faith and peace under grace during difficult times.

What brain tumor?

I called home from the office this morning to check with Susan and see if she was feeling better. She’d had a few symptoms return after a weeks-long absence and was feeling tired and discouraged when I left the house. By mid-morning, she’d slept some more and was feeling well. When I called, we had one of those fluid, lucid conversations that are becoming more commonplace and lead me to wonder, “What brain tumor?” Susan is clearly in the best shape she’s been since last year at this time when hydrocephalus set in and set off a season of infections, fractures, illness, and hemorrhage. Her improvement over the past 3-4 months has been remarkable – and most welcome, since it’s ushered in a level of normalcy to our household that we’d missed for a long time. This morning’s episode reminded both of us how little she’s been ill recently and alerted me that complications could interrupt our lives again at any time. We remain, as ever, squarely in the Lord’s hands and thankful for Susan’s healing, strength, and restoration.

We had a conversation at church recently with some friends who have been faithful in support and prayer for Susan. A typical 5-10 minute chat involves the weather, the movie you saw, the team you like or what the kids are doing, so it’s not ordinary for a person to speak of death and dying in the span of a casual conversation. But when Kristen shared that she’s been encouraged by Susan’s faith, Susan responded honestly in what’s become a normal (but not too frequent) acceptance of our situation. She said something like she couldn’t have expected all that’s happened, but she’s ready to go home to the Lord whenever he’s ready for her. She believes God has a purpose and work for what remains of her life on earth, but when it’s time to go to heaven, it will be far better than being here.

Her comments demonstrated Susan’s peace with her circumstances, her trust in whatever the Lord’s plans are for her and the glorious confidence she has in her future. I couldn’t help but note the odd contrast of her words considering how well she’s doing, but I also cannot imagine a greater gift than God’s perfect love that casts out all fear (1 John 4:18). It’s just like our good and sovereign Lord to solve a problem for us that way – if he doesn’t remove the circumstance that’s giving us trouble, he’ll take away its ability to trouble us.

Paul writes, “Where O death, is your victory? Where O death, is your sting?” The passage he quotes in 1 Cor 15:55 is from Hosea 13:14,

“I will ransom them from the power of the grave; I will redeem them from death.
Where, O death, are your plagues? Where, O grave, is your destruction?”

Put another way, the Inez Andrews gospel song says, “Lord, you don’t have to move my mountain, but give me the strength to climb.” I just love that Susan is living it.

New blog gadget: Followers

Here's a purely administrative note - I've added a new feature for an easy way to follow our blog, a gadget called Followers. You can become a follower using the button on the left of the home page and keep up with the latest entries.

Moving right along

The trend of improvement continues for Susan in all respects, cognitively and physically. We hope this path leads to greater independence and eventually to her ability to be alone safely. Susan is taking more initiative with more activities and has been less apt to forget the next step in a routine activity unless she’s tired. She still needs stand-by assistance to get around so she doesn’t fall, but her endurance is increasing. We walked to the end of the block on Saturday for the first time in six months or more. Tonight at bedtime she brushed her teeth, walked to the bedside, applied some lip balm, and put on a small brace she wears at night to position her shoulder properly. These are simple, regular tasks that I had to do for her only months ago because she lacked the impulse or the strength. Tonight she did them while I was not even in the room. We thank God for His sustaining care and healing hand for us.

Our chance encounters with friends lately remind us again of God’s phenomenal love in the Body of Christ. From church to the grocery store and points in between, people ask how Susan is doing and say they’re praying for her. When we saw Elvia from church at the chiropractor on Thursday, she knelt next to the chair Susan was sitting in and prayed for her there. When we saw our neighbors Robert and Carrie Nicks at Adam’s choir banquet on Friday, they came across the room to our table to greet Susan. They remarked how good she looks and said they keep her in their daily prayers. Later we commented to each other how amazing it is that people are so committed to praying for us. These glimpses into the world of unseen support assure us God is working graciously and mysteriously. I know the burden of Susan’s brain cancer is lighter for us because the Lord has prompted others to help us carry it with their prayer, words of care, and acts of kindness. The depth of God’s goodness and the goodness of others is astonishing.

I’ve been returning to Psalm 25 lately, a comforting vehicle for me to be laid bare before God and accept my smallness before Him and His kindness toward me. David says in verse 16, “Turn to me and be gracious to me, for I am lonely and afflicted.” This is an amazing request that reveals the very nature of the Living God. Considering some sources of power, it would be a crazy thing to invite them for a personal experience. Would I want a bomb blast, a bolt of lightning, a gun-toting terrorist or a roaring hurricane to turn to me? These powers are greater than I am. I cannot control them. They could destroy me. But isn’t this also true of God? Why would I ask Almighty God to turn to me? God’s power exceeds any other – He is the source of power. He is uncontrollable – He is sovereign in all respects. But God is good. God is kind and He is gracious. He has committed Himself to us in faithfulness and love. If not for these, only a fool would say, “Turn to me.”

If David understood God’s power, and to read the Psalms he wrote I’d say he did, he also understood His gracious nature. The kindness of God made it okay for David to approach Him humbly so the power of God could meet his need. “Be gracious to me, for I am lonely and afflicted.” I am convinced God uses the hard things in our lives to help us realize our need for Him. Since He is for us, His power is for us also. With such a resource available for the asking, perhaps the foolish thing is to not say, “God, turn to me.”