On faith

With over three years since Susan’s brain tumor came along, we've come to accept the reality of our situation and trust God with the outcome. Every now and then I’m reminded of the grim statistics, and saw another today: fewer than ten percent of people with GBM are still alive five years after diagnosis. Still, Susan has outlived the average survival of 12-18 months and has responded to treatment each time her tumor has grown. So, we keep in mind that statistics are a collection of data about a topic, and they don’t determine the outcome for a person with brain cancer. As I noted recently, Susan has had no great improvement, but hasn’t had any nasty complications for a number of months, while her tumor has been stable for a year. Our stance remains the same – trusting God, praying always, hoping for the best, and ready for anything.
 

Given our outlook, we haven’t needed to ask why. I think lots of people get stuck there. Upheaval is frustrating. It doesn’t make sense. It’s not fair. It’s natural to bog down in it, shake your fist at the sky, and demand, “Why?” But we accept that if the question is unanswerable, we waste a lot of resources asking it. Instead, we’ve found peace in trusting the Lord and his good, mysterious plans for us, and focusing on our response to our situation. That's a work in progress; but we have peace. Even so, the desire for understanding remains, though not in a disruptive way. It just makes me wonder – what is God doing?
 

I was invited to sing on the worship team at church on Sunday at 9:00 and 10:30, an activity that used to be a weekly routine but now is something we can manage once in a while when Bob asks and when Susan is doing well. We used to be at church for hours on Sundays, interacting with lots of different people all over the campus. Lately it’s different – we park in a handicapped space near the side entrance, scoot into the sanctuary sometimes on time, visit the restroom after the 9:00 service, get home so Susan can rest, and interact with whomever we might see within that small space and time. But this Sunday we were there for several hours once again, more mobile, and able to run across a variety of people. The recurring comment amazed me: people are praying for us. We know this, but Susan and I continually heard words like, “I’m praying for you.” “We pray for you every night.” “You’re in our daily prayers.” “Our small group prayed for you this morning.” It was awesome to hear, in random encounters, over and over again. The message was unavoidable. It made me wonder – what is God doing?
 

Last night while dreaming I heard a voice say, “Faith is like a tree. It sends down roots and grows strong and tall, stretching its leaves to the sky.” Then I heard another voice. “No, faith is like a feather, delicate and blown around by the wind, and completely unable to fulfill its purpose on its own. But with others, connected to the body and the wings of the Holy Spirit, it soars to unimaginable heights.” THAT made me wonder.

A three-year brain tumor survivor

Susan remains strong and stable prior to her next tests to update the status of her brain tumor and kidney stone.
 
June 26th marks three years since we discovered Susan’s brain tumor, an anniversary laden with paradox.  As a glioblastoma multiforme patient, she has surpassed a life expectancy that averages only about a year from diagnosis.  That’s a fact too obvious, since we’ve known four friends and one Massachusetts senator who have succumbed to high-grade brain tumors since our journey began.  Susan has beaten the odds. Yet with just 10% of GBM patients surviving more than five years, we wonder what the future holds.
 
Why is Susan is a three-year survivor?  Is it that at age 46 when diagnosed, she was younger than average and better able to rally her strength?  Is it that she had access to surgeries, medications, and treatments when she needed them along with world-class care at UCLA? Is it that her type of tumor has a mix of cells that responded better to treatment than others?  Is it that she’s got an unquenchable positive attitude?  I'm encouraged by these comments in a NY Daily News article: 

While new findings continue to extend the lives of patients with glioblastoma, for the moment, it remains one of the most dreaded diagnoses. For those who receive it, putting up a fight against the tumor may help.

“If you go to the Internet and do a search on outcomes in glioma, everyone will call it a terminal illness,” Dr. Henry Friedman, co-director of Duke’s brain tumor center, told the Times. “Your outcome is ‘dead on diagnosis.’ If you don’t have the philosophy that you can win, you have lost before you started.”

NY Daily News 09/01/09: Glioblastoma

While there may be a number of reasons Susan is doing well, ultimately we see God's hand at work.  He's keeping us.  It's just a mystery.  We come to the end of three years with no conclusion – except that Susan has survived this long.  Even the term “survivor” can be troubling.  Was Ted Kennedy a brain cancer survivor for 14 months until he died a month later?
 
Paradox enfolds our spiritual perspective as well.  We are burdened, but not broken down.  Fear attends, but God’s perfect love forces it to the margins.  In turmoil, we've received peace.  Our weakness has been overcome by God’s strength; our vulnerability covered by his faithfulness.  Yet while God is able to heal Susan from GBM, he has not.  Suppose he does?  A Susan healed from GBM will eventually die from something else. 
 
Through this paradox, a force drives us.  Susan is driven to be gracious, enduring, and hopeful as she strives to live. I am driven to care for and encourage her, to declare her a survivor, and to try to make some sense of our situation for our sake and for others.  Three years ago, we were driven to acceptance almost immediately and found the load lighter.  We were driven to behold the darkness and void, and realize it has not been given any power over us. 
 
We are compelled to complete this season of testing, whatever the outcome of Susan’s disease; to see it not as an affliction but as an experience with God. As for me, I knew I was in for a time of testing.  This was a test of faith I must pass.  Do or die.
 
Honestly, I have failed wildly.  But even wilder has been learning my failure was for my benefit, not God’s. My weakness is no surprise to him - but I needed to see it myself.  In terms of spiritual currency, I’m broke.  I’m so broke, sometimes I can’t even pay attention.  But now, in my brokenness, comes the greater part of the test – testing God. The paradox deepens.  

Who is this God who flips a season of testing so he's the one on trial?   Who is this God who decides in advance to bear with his fragile children so we can come to terms with our weakness, which itself is the key to knowing his strength?   Who is he, secure enough in the outcome that he's willing to allow a messy process to play out?  When everything's gone wonky, we're laid low.  Now God can get our attention, help us know he's near, and communicate deeply to our souls about his true nature.

• It’s exactly when your courage is sapped and you feel alone that you can know the God of Deuteronomy 31:8, “The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
• Seeing you’re awash in peril yields the real power of John 16:33: “In this world you will have trouble. But take heart! I have overcome the world.”
• It’s natural to tremble in the face of death.  In that darkness, an ancient enemy looms and would overtake me.  But when I notice God is there and he’s relaxed enough to “prepare a table before me in the presence of my enemies” (Psalm 23:5), then I am at ease too.  God himself becomes my confidence.

To be serene while facing death almost makes no sense.  To be joyful in hope with brain cancer is a bit of a contradiction.  To be confident in one unseen who’s waiting at the end of a journey marked by pain, loss, and uncertainty is actually understandable when you know who's really there. At three years, we’re growing more comfortable with the mystery.

Clearing infection, stable scan

Susan’s lab tests early last week were positive for a urinary tract infection, explaining her recent slump.  We coordinated with her infectious disease physician, who meets the highest standards of care we've come to expect at UCLA, but is someone we’ve come to know too well over the years.   He prescribed an antibiotic that seems to be working well, given Susan’s gradually improving symptoms.  We’re relieved to learn there wasn’t something more serious afoot since a UTI is relatively easy to knock down. 

Wednesday found us back at UCLA for Susan’s scheduled MRI scan.  Gratefully, her tumor is unchanged once again, so the CCNU evidently has been working.  We had an unhurried visit with her oncologist, Dr Nghiemphu, discussing plans for her steroid taper, the possibility of having chemo next week, and her treatment schedule once we’re done with CCNU.  Susan’s recent series of blood tests show her platelets are low and trending lower, so she went for more labs on Friday.  If her counts improved, she may have her last dose of CCNU next week; otherwise, she'll be done after five doses. 

Susan spent an extra hour in the MRI scanner on Wednesday for a research study using MRS, or magnetic resonance spectroscopy.  This is a term that can make you feel really smart for a moment while you say it.  The sample of her brain tumor tissue taken in 2007 shows she has a genetic mutation that occurs early in the formation of brain tumors and seems to indicate a positive response to therapy and positive prognosis.  Susan’s neurosurgeon and neuro-oncologist asked if she would participate in their study since they’re searching for a non-surgical way to detect this genetic alteration in others during the early stages of brain cancer treatment.  They know she has it, so they’re experimenting with MRS hoping they can see it.  This extra scan not only was useful in their research it was a useful complement to Susan’s PET scan last year that will help the neuroscience team know more about her tumor.
 

We’re thankful as ever for good MRI results, great care on all sides, and for God’s never ending faithfulness for us.

Great comfort at Christmas

One amazing thing about traveling the road of hardship is how frequently you find hidden treasures on familiar ground. Susan's brain tumor journey is hard. It truly is a matter of life and death with its ultimate outcome waiting in one of two places – healing (and Heaven later) or Heaven directly. Since we are confident in the goodness of God, we're also confident in the goodness of the outcome he has in store for us, which ever it may be. But in the meantime of uncertainty, there's work to be done, discomfort to push through, fear to cast out, and doubt to dispel, all in the context of Susan fighting brain cancer as her loved ones do what we can to help. The journey yields rewards in faith and character that will have lasting effect. But still, it's hard. Our hope for a better day in the future is what sustains us.
Just when we need the inspiration, it's just like God to provide an example for us in the Christmas story I've heard hundreds of times. One major theme is the humble nature of Jesus' birth – poor, quiet, and isolated, so out of place for the King of Kings. But defying expectations was normal for Jesus. He fulfilled Messianic prophecies to the letter but was not the political ruler most people expected. Focusing on doing the will of his Father, he bucked a religious establishment steeped in legalism. Embodying the authority of the Creator, he challenged the government who feared his power and envied his allure. Ultimately, these religious and political leaders converged to bring charges that resulted in Jesus' execution on a cross. So the life of Jesus that confounded most observers came to a perplexing end. But far from a failure, his 33 years on earth were just the first phase of a divine plan implemented at God's great expense. Jesus succeeded in revealing God's heart to us and offering salvation by his death as atonement for our sin. Even the greatest skeptic cannot ignore the impact Jesus has had on human history, affirming it with every check written this month – December, 2009 AD.
The treasure I found on familiar ground this Christmas? I realized God himself has done just what we're doing – enduring the hardships of this broken world and delaying gratification until a better day arrives. Right now we live between the advents, after Jesus' first coming and before his second coming. But his second coming will not be humble like the first. Next time it will fit the King of Kings and will be a game-changer, as overwhelming in power and majesty as his first entry came in mystery and obscurity. If his first episode with us in bodily form was costly, sacrificial groundwork, his next will be triumphant dominion. Isaiah 45:23 and Romans 14:11 say it well: "Every knee will bow." Along with the fullness of his kingdom, Jesus will receive the reward he's been waiting to collect – the people he came to save. I don't know what's more amazing, that he's so crazy about us he would go to such lengths to give us eternal life, or that he's so patient he'll work his plan for thousands of years to get the greatest harvest. Either way, God redefines the term "delayed gratification." His patience provides an astounding contrast at Christmas when time seems compressed, buying and consuming become frenetic, and we reduce ourselves to the instant pleasures of getting, having, tasting and doing.
Back to the brain tumor journey – we're still on it. There's no fast forward. We live each day with the weight of a hard situation. So do other cancer patients, farmers with drought-laden fields, the unemployed, the dream-deferred, and so on. This is the stuff of life. But God knows all about it because he's walked in our shoes. He draws close with true empathy and whispers a promise, laced with comfort: "Everything's going to be okay. You can do it. I will help you. Just a while longer..." He knows what it's like to wait.