Our happiness

Susan’s status is thankfully unchanged, if not slightly better as she’s doing well weaning off steroids. We’ll be back at UCLA next week for another MRI and clinic visit.

Given Susan’s brain cancer, a number of friends from church who died this year, and several more dear friends who are fighting for their lives against cancer and other disease, we approach Christmas with a deeper appreciation for what that manger held two thousand years ago.

But first, I’ll not call it a manger – that word brings to mind the safe image found in songs and sketches. It was a feed trough for livestock. Picture a crude wooden bin holding grain or hay, stained with the slobber of cows or donkeys or sheep. Maybe one of the animals had chewed away its edges. Maybe some hairs from a cow's neck were wedged in a splintered front board and drizzled with muddy spittle. You get the idea. As much as we love lighted nativity displays, the Creator of the universe slept in the type of feed trough found next to puddles of urine and piles of manure. In our day, “manger” sounds too clean.

The distance the Son of God traveled to become our Savior is important to grasp for people going through hard times. It shows that God enters impossibly into messy and hopeless places and will deliver us. Paul’s eloquence on the incarnation in Philippians 2:5-8 is astounding:

In your relationships with one another, have the same mindset as Christ Jesus: Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death — even death on a cross!

First Jesus made himself nothing. Then he humbled himself. He came down all the way then came down even more. Who is this God, anyway? How much must he love us that a member of the Trinity would leave the glory of heaven to enter our world? And what does it say about him that he avoided the splendor that should attend the arrival of the King of Kings, chose the most helpless form of human existence, and was  placed a feed trough in an obscure Judean town?

That feed trough contained more than a baby – it contained love. Somehow, it contained the very source of love. The fact that God is all-powerful would be a terrible thing if he did not love us. We should fear his power and treasure his love. His power did for us what we could not do for ourselves in securing our salvation and eternal life, but his love made that power work on our behalf.

Love always has an object, a focus, what the lover can’t get out of his mind. For God, it’s us. Shall I summarize the Bible, the world’s best selling book of all time? The Bible is 1189 chapters contained in 66 books written by 40 men as they were inspired by God over a period of 1600 years. But we can pack over 773,000 words into just five: God is crazy about us. He’ll give us anything for our good because he loves us. His greatest gift to us was Jesus in that feed trough.

Love is costly. God’s love is unrestrained – he has paid dearly. Could we measure the cost of his creation, the cost of his disappointment at the fall of man, the cost of his incarnation, or the cost of his death and resurrection? It’s unimaginable. We can’t understand the extent of what God did for us, or why, but the heart of his plan was laid in that feed trough. Making himself nothing and then humbling himself means the One who spoke the world into existence would actually reduce his language for a time to coos and cries. The depth of God’s love for us means it’s okay with him if we don’t understand or appreciate its cost.

Love brings life. People who are loved become energized, brightened, and confident. Infants deprived of love become poorly developed. With love we live; without love, we die. Life came into the world and was placed in that feed trough, a new life born to Mary and Joseph, and eternal life for us through Jesus’ work on the cross. This life, this love, inspired the hymn writer to pen “Strength for today and bright hope for tomorrow, blessings all mine with ten thousand beside” (Great is Thy Faithfulness). This life and love are why we and others enduring hard times appreciate the meaning of Christmas.

It sounds weird to say, but these hardest days of our lives have also been our happiest. With Susan’s breast and brain cancers, we’ve experienced loss and turmoil – the stuff that comes with major crisis and upheaval. But we’re loved, and we’re learning good things about the God who loves us. Instead of despair, we’ve received joy, hope and peace. We have life with each other now and eternal life with God in heaven later. It’s such a gift. It’s all because of what was in that feed trough. Merry Christmas!

Steroid taper continues

Aside from often-daily bouts with headache that require rest and pain meds, Susan continues to do remarkably well on her lowest dose of Decadron in at least the last 18 months. Headache is common as her body adjusts to less of the oral steroid and needs to jump-start its own natural production. But the fact that she’s been free from tumor or other problems for months means we can pursue this effort as far as possible. It also gives her a chance to shed the influence of side effects like bone loss and diabetes. We’ve learned to be ready for setbacks, but become more hopeful with the progress as time goes on. She’ll be back at UCLA before the new year for her next MRI and tumor update – but symptom-wise, things look good.
 

Today’s Brain Tumor News Blast from the Musella Foundation highlights research co-authored by Doctors Leia Nghiemphu and Linda Liau, Susan's UCLA neuro-oncologist and neurosurgeon. Their team’s 2006-2008 clinical trial study of 70 new GBM patients showed improved progression-free survival when treated with a regimen of Avastin (Bevacizumab) and Temodar (Temozolomide) following radiation therapy. Susan was not part of the study, but she's had each of these treatments during her course of treatment at UCLA.
 

Get the story: Journal of Oncology, Dec 2010 

While the clinical trial did not advance overall survival, it nearly doubled progression-free survival from 7-8 months to nearly 14 months. Such gains may seem small – but to me the study reveals the intensity of the battle as specialists try to find better ways to help GBM patients survive this devastating disease. That the study’s overall survival rate was 14 to 21 months makes us all the more grateful for Susan’s survival and good condition at 42 months. We’re also proud of the work her doctors are doing and glad she’s being helped by the best of the best.

Another good week

With more distance between her and the conditions that led to July’s hospitalization, Susan continues to improve. Some of her sores from shingles remain and still are painful, but much less so.  We had several more urology activities, including another consultation on July 30 to discuss the treatment plan for Susan’s kidney stones. While the stones may be causing her ongoing infections (with another last week), we decided to table the issue until we know whether the bladder pacemaker may fix her incontinence and another point of infection.
 

Susan had an InterStim device connected Tuesday on a one-week trial basis. She has a controller the size of a large TV remote that clips onto her waistband and connects electrodes passing under her skin to the sacral nerve on the lower spine. The idea is that when urinary urgency or frequency is caused by disrupted brain signals, sending mild electrical pulses to the pelvic floor can help a person regain control. Susan has had some improvement so far.  We’ll evaluate the results on Monday with the urologist. If they look good, we’ll schedule another surgery to implant the device.
 

I continue to be amazed at Susan’s unquenchably positive attitude and enduring faith. To her, today’s headache is not as bad as yesterday’s and will be better tomorrow. Those shingles sores were a lot worse a few weeks ago.  That back pain will only last a few more days. True, her incomplete memory means her awareness of pain that continues even over days at a time is blessedly distorted. But her ability to draw from her reservoir of hope truly is life-sustaining. 

Speaking of her incomplete memory, I enjoy Susan’s remarks lately when it’s time for dessert. Since her diabetes became known to us, she now enjoys a low-carb fudgesicle after dinner instead of something with lots of sugar. She really enjoys it. A lot. She’s thrilled she actually can have such a treat. She’s astonished it’s not forbidden. It’s indulgent. It’s dreamy. It’s so satisfying. Carried away in a silky-cold chocolate stupor, she’ll say something like, “I know I have this treat every night, but what's nice about not remembering things is that I forget how much I enjoy it, so I get all excited when you bring it to me the next night. And now it’s the next night already so I’m really happy.” “Yep,” I reply, “First time every time.”
 

When we broke Susan’s overnight fast after surgery at noon on Tuesday, we gave thanks for our food and for all the support we get from doctors, family, and friends.  Susan recalled being greeted by someone at church on Sunday who’s familiar with our situation and said she’s praying for us. Susan doesn’t know her well. She thought about all the people she doesn’t know who know about us and support us in prayer. Her thoughts turned to Heaven.  She said someday she’ll go to Heaven and she’ll see all these people she doesn’t know now but will know then, and will have an instant connection to them. As she’s said so many times before, she said we have no idea about the things God has in store for us in Heaven. It will be amazing.
 

I think of what John says – that disciple who saw and heard and touched and knew Jesus on earth, and years later writes about what is to come. 

“Dear friends, now we are children of God, and what we will be has not yet been made known. But we know that when he appears, we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure.” 1 John 3:3-4

This is the hope that’s burned into our souls. This hope holds out the possibility that God could heal and restore Susan instantly for the remainder of her years on earth.  But greater than mere possibility, this hope holds out real knowledge for us.  We know we’ll have eternity with God that’s beyond anything we could imagine.

Last dose of CCNU, and Susan's godly burden

A blood test early last week determined Susan’s counts had once again improved enough to have chemo, her sixth and final dose of CCNU.  I hoofed it to UCLA Wednesday afternoon to pick up the single $35 capsule since I can’t get it filled at our local pharmacy.  She took it as scheduled Thursday night along Zofran to prevent nausea.  Dr Nghiemphu reduced the CCNU dose to 100mg to balance the drug’s cumulative side effects with the benefit of finishing the full treatment, since Susan’s tumor has been stable since she started taking it last fall.  
By Saturday, Susan was noticeably weaker and more confused, but has improved with rest.  We’ll return to UCLA in about six weeks for another MRI and oncology visit, followed by what we expect will be our next watch-and-wait phase.  Since GBM is progressive, it's likely her tumor will grow again at some point and require some other course of treatment.  Meanwhile though, we marvel at how God has kept us so far and we continue to pray for healing.
 
People who knew Susan before her brain tumor onset but haven’t had much contact with her lately may wonder what she's like now.  How much of the Susan they once knew would they still know?  
 
The fact is Susan's been through a major ordeal with major effects.  Her continual use of Decadron for brain swelling literally put her appetite on steroids and led to weight gain.  The drug also caused muscle loss and the classic “moon face” appearance of many brain tumor patients.  Her occipital stroke blinded her right peripheral vision and changed the way she sees color.  Prone to falling, she needs someone with her all the time.  She needs help to stand, can walk with her cane under guidance, can climb a few steps with support, and needs her wheelchair for longer distances.

Susan’s memory and word-finding have suffered also, turning her expressions into verbal popcorn.  Words have become interchangeable.  While we’ve always enjoyed being a bit tilted (or at least I have), now the absurd is not always governed by the will.  It’s normal for her to call our dog a cat, or to say our son just helped her after Lexie did.  Sometimes a thing she just heard gets mixed in with what she wants to say.  If we’re watching “24” and she can’t remember if she had dessert, she might say, “Did I already transfer the nuclear fuel rods?”  She sighs in frustration when she realizes she’s not saying it right.  When I know what she wants, I can clarify it quickly.  “Do you mean you’d like a frozen juice bar?”  Our routine at home usually makes the detective work pretty easy.  The fact that I can figure her out makes her think I’m a hero, which I don’t mind.  Her mix-ups sometimes may sound funny to the kids and me, but we attend to her need, never demean her, and patiently encourage her when she feels like she’s not smart.

People who experience brain trauma may experience some personality change.   An intellectual type might become more emotional.   Another person might become more cynical or combative.  Susan has become sweeter.  In some ways she's more childlike, sort of like a playful retiree being freed of earlier responsibilities.  And she's a bit less inhibited.  She likes to sing, especially funny songs, loudly.  She doesn't always care who's around.   She ends with a particular flourish that’s become something of a trademark.  I usually grade her performance, “That was a good one.”  She’ll respond smiling, “Thankyouverymuchy.”  She enjoys playful banter, reciting lines from movies or classic Saturday Night Live, and repeating silly clichés we’ve come up with over the years.  

Clearly, Susan is different in many ways than she was three years ago.  But the thing you might not know at first glance is Susan is intact.  Although much of her life has become so basic, her soul, her capacity to love, her sense of the eternal – who she is, really – is not only unaltered, it’s enhanced.
 
I came home one day last year and learned “The Price is Right” is her favorite TV program.  You think you know someone.  Maybe she was just usually available to watch TV on weekdays at 10am and it was the best thing on.  Whatever.  We record it now and zip through the commercials to keep our grip on the action uninterrupted.  Someone normally wins a showcase at the end of each broadcast, screams, jumps around, hugs Drew Carey, and is swarmed by family and friends.  Then they all clamber around the shiny car or boat and wave at everyone while the credits roll.  
But on one recent show, nobody won.  Both ladies overbid.  They had to settle for consolation hugs from Drew while he reminded them they’d still won the TV or Rice-A-Roni.  They weren’t jumping around or being swarmed by family, and with no great celebration on stage, the cameras were trained on the waving and smiling models and the waving and cheering audience while the credits rolled.  I made my best NBA buzzer sound and said, “Double losers!”  Susan didn’t share my amusement.  She sat quietly in her chair and said, “I don’t know why this is making me sad.  I shouldn’t watch things like this.  I don’t like to see them lose. I want everyone to win.”  
Her eyes grew teary.  I paused the screen when I realized something deep was stirring in her that had nothing to do with a TV show.  God can nudge us in the most mundane moments.  Somehow, seeing that loss on a game show moved Susan to feel burdened by people not reconciled to God.  “If they only had what I have, what Jesus has given me – if they only knew what Jesus has for them.”  Wow, holy ground, in our den.  I tried to comfort her, “I know it’s hard to see people who are lost.” 
 
“I just need a minute.  I’m just sad.”
 
The things Susan says can be unpredictable and sometimes awkward.  I certainly wasn’t expecting a profound spiritual moment during a game show.  But it’s a beautiful thing to have your heart touched by the things that move God's heart; and Susan’s capacity for that seems to be deeper now.  Compassion is God’s gift that compels people to act on his behalf to extend the goodness of his kingdom.  I wonder if those who don’t know Jesus yet have any inkling that the Living God and those he inspires are laboring over their salvation.  
 
I doubt we would have had this moment apart from Susan’s present condition.  I’m sure we’d be encountering God in other ways; but this one suits me just fine.  Susan has endured great loss and still faces a deadly disease; but with God’s peace and hope, we’re doing okay.  She is rich in spirit and is as vital as ever.  We’re connected in ways that only her brain tumor circumstances could have allowed.  Having God’s presence and protection in the face of destruction is amazing.  It reminds me of his promise in Psalm 91:7, “A thousand may fall at your side, ten thousand at your right hand, but it will not come near you.”  We stand on these words of life!

A mild lapse, but improved again

Susan improved again after being burdened for a couple of weeks with greater fatigue and confusion most likely brought on by some combination of chemotherapy, a lower steroid dose, and a cold and cough.  Her blood counts returned to normal ranges the week following last month’s oncology visit, so she was cleared to have her 5th dose of CCNU on March 4.  She’s been understandably more tired, but again had no nausea or vomiting, thankfully.  Her next series of blood tests will determine whether she’ll have her 6th and final dose of this chemo. 
 

We visited UCLA again yesterday for an infectious disease follow-up with Dr Uslan, who tracks Susan’s progress from past complications like fungal meningitis and urinary tract infections and provides another set of eyes on her blood counts and liver function.  We were glad to have an uneventful exam and extend her next visit to six months from now. 

We celebrate Susan’s continued stability along with the gifts of life and our marriage as we approach our 25th anniversary on March 23rd.  In the months following Susan’s diagnosis in 2007, a generous and anonymous friend gave us a gift certificate for the Surf & Sand Hotel in Laguna Beach.  We were too consumed with crises to use it initially, but I thought of using it last March for an anniversary getaway since she was in pretty good shape.  I faced the brain tumor quandary – do we seize the day and get to Laguna while we can, or do I gamble on Susan living another year so we can celebrate our 25th in style?  With less than three months out from a life-threatening brain hemorrhage, would she have another?  Would tumor growth or infection or something else interrupt?  Would Susan yet become a GBM statistic for the 24-month average life span after diagnosis? 
 

I had our silver anniversary in mind, but I was trying to answer just another form of the original question – how long will Susan survive?  Since the answer is unknowable for us, I circled back to what we do know:  our lives are in God’s hands.  That resolved, I could go on faith that we’d get to our 25th together if it’s God’s will since he knows what’s best for us.  It felt good to have such a goal.  And it was strangely enjoyable to defy the beast of uncertainty made up of all the things that could go wrong over the next year.  It’s kind of like I was flipping GBM the bird even though I’m not the bird-flipping type.  Take that.
 

This whole brain tumor journey is stinking hard.  It’s hard emotionally, spiritually, physically, and financially.  It’s hard on Susan; it’s hard on me, on our kids, on our parents, on our family and friends.  I wish I could say I’m unwavering in my strength, but one day recently I became upset under the stress of getting errands and things done at home when I had to take time to help Susan.  Since I was obviously irritable, she apologized and said she’ll do anything she could to help.  My thought came immediately and shocked me:  “How about not getting a brain tumor?”  I held my tongue.  

A few months ago I concluded that with all of Susan’s deficits from vision to mobility to memory, I’m just glad to have her around.  I told myself if this is as good as it gets, it's okay.  We’re still together.  After 25 years of marriage and nearly three years in brain tumor world, her weaknesses have exposed my own.  Confronting my brokenness has been as hard as anything else we’ve been through.  I believe it’s one of the great human challenges under any circumstances.  I’m learning my strength will fail and even my resolve will waver.  But I’m learning to trust the one who loves us incredibly and whose promises are enduring:  

But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  2 Corinthians 12:9

Our 25th anniversary will be a special day for us.  We're grateful to belong to each other for so long and thankful for someone's caring gift so we can celebrate so nicely.  I’m so glad I met my Susan.

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.