Transformation

We’ve been having a transforming experience now for over 4½ years.

Life is all about transformation – as you read these words, you no longer appear the way you did when you entered this world and took your first lungful of air. Whether physical, mental, emotional, or spiritual, most of life’s transformations occur gradually as we grow and have new experiences. These changes may not be evident in the short run – but consider yourself after over a decade or two and you’ll see a transformed person. Life does that.

Some of life’s transformations happen quickly, like when Susan's brain tumor made itself known. A headache that wouldn’t quit and a search for the cause – six weeks. A CT scan; a seizure, stroke, and surgery – eight days. Having the reality of death thrust upon you is immediately transforming. So are the sudden effects of disability with brain trauma. Having our game board overturned so suddenly made us wonder what we still had, what we’d lost, and what would happen next.

Loss itself is transforming – we’d lost our familiar way of life, we’d nearly lost Susan, and we had certainly lost control. But in so much upheaval, something stayed intact. It’s our foundation, our faith, our understanding of God; who he is and who we are. God had poured that foundation into us from his heart and his might. And it stayed. Our foundation shook as violently as anything else, but it didn’t groan or break. It stayed. And widened, deepened, and got stronger. It’s amazing.

Life has changed so much for us since 2007. Susan went from a full-time mom of teenagers and practicing dental hygienist to a brain cancer survivor. She’s been through the tumult and continues to fight. The kids and I have been along for the ride, all bolted to our foundation. What once was unbelievable for us became reality: not just cancer, but brain cancer; a stroke, craniotomies, chemo, radiation, meningitis, hydrocephalus; a brain hemorrhage; bone fractures, infections, and so on. Then something more unbelievable happened: we discovered we’re okay.

Somehow, in a short span of time, we have been and are being transformed. Our greater foundation means we regard death differently. I remember a time when thoughts of death for Susan brought great fear. Not anymore. Not since we’ve walked through that valley and realized there’s a wonderful, necessary purpose in it. We’ve moved to acceptance, even anticipation. When we talk about dying now, Susan looks forward to being with God in heaven. She wants to experience the new home he’s prepared for her. She knows living there will be truly living. It will be magnificent. We’re together in our outlook. As much as we value and hold to our life on earth, when it’s my time to go I intend to have a running start.

Why are we okay? One of Jesus’ companions, John, writing with wisdom and perspective toward the end of his life, says: “There is no fear in love. But perfect love drives out fear, because fear has to do with punishment.” (1 John 4:18) There was a time when Susan doubted God’s love for her. She was aware of her sin and knew she deserved punishment. But there was grace. About ten years ago she was led into a season of healing and deep affirmation of God’s love for her.

We both enjoyed that season, its transforming effect on her. We enjoyed the confidence she gained in herself, her God, and her future. When breast cancer came, she was ready to handle it in the right spirit because her foundation already had been improved. When brain cancer came a year later, the love and strength God had poured into her made her ready for that. The nearness of death, while unwelcome, did not send us reeling because God had already removed its sting and wrapped us in his grace. Then we realized we’d already been transformed. That discovery itself was transforming. 

So, this far along, we are: saved and being saved, healed and being healed; transformed and being transformed. We thank God for the foundation he’s given us and look forward to what’s next.  

Four on the Fourth

We especially enjoyed celebrating the Independence Day holiday this year since it was four years to the day since Susan's emergency brain surgery. She was diagnosed with her brain tumor in late June 2007 and had been scheduled for a craniotomy two weeks later, but Susan's worsening pain and sluggishness found us driving to Long Beach Memorial on July 3rd. She had a seizure in the car on the way and had to be wheeled into ER. She was moved to ICU that night when her condition became more critical. She wouldn’t regain consciousness for another 36 hours. More brain scans followed the next day and led the neurosurgeon to recommend surgery right away. Friends and family left their July 4th parties and gathered in the hospital chapel to pray. The mood lightened when Dr. Javahery reported a successful surgery and that Susan was doing well.
 
July 5th brought Susan's new awakening into brain tumor world. She knew me, but initially didn’t remember we had kids and had to be introduced to the idea of them. She didn’t know what had happened and couldn’t understand it when I told her she’d had brain surgery. I’ll always remember death was near that morning. The best way to describe it is not that she almost died; but that death was near. She wondered who was asking her to give up her spirit. Stunned by her question, I wondered if I was going to watch my wife die in front of me. I’d already given her to the Lord for the good of his will, so I told Susan that if she needed to go, it was okay. We don’t know what sort of spiritual exchange took place as several silent minutes passed; but the threshold where she found herself slowly dissolved. Susan would live.
 
It was a memorable episode, another in what was becoming a string of extraordinary events. We pressed on into the fullness of brain tumor world – a second craniotomy; then radiation, chemotherapy, rehab, and complications that would dip us back into crisis mode again and again. There was more rehab, and more improvement. Crisis mode became chronic mode, which has become normal life. Recalling our low points makes the height of Susan's progress that much sweeter. She’s still doing about the best yet since this journey started. It feels good to refer to her as a four-year survivor of glioblastoma multiforme.
 
We enjoyed a long and relaxing Independence Day weekend at the family cabin, just the two of us. We remembered July 4th 2007 repeatedly and in prayer, giving thanks to God for how far he’s brought us. Susan had her first walk in the mountains in four years, if you don’t count ambling between car door and cabin door. We made it more than half way up our road and back, stopping frequently along the way so Susan could catch her breath while we observed our surroundings – this family’s cabin, that type of tree, the northern ridge concealing Big Bear. She was wiped out and needed a good nap when we got back; but our walk was a highlight of the weekend.
 

Lately I’ve heard the word “miracle” come up in chatting with people about Susan. “That’s a miracle” or “She’s a miracle,” they say. I wonder about that. I wonder what it would be like to wake up one morning and see my wife as she was in 2005, slender and blonde, scrambling off to the dental office in the SUV I now drive, before her breast and brain cancers. That would be a great miracle. But then I think about how I once came up with my own definition of a miracle after spending time in prayer. Ironically, I think it was in 2005. “A miracle is nothing more than God’s provision at the point of human need.” In that case, she’s a miracle. A great miracle.

Best ever

Susan is doing about the best ever since her brain tumor was diagnosed. With well over 18 months since her last tumor progression, she’s continually stronger, more energetic and alert. When my brother Jon was in town from Colorado recently, he looked across the dinner table and pronounced he was looking at the normal Susan again. Yesterday at UCLA for labs and a CT scan to check her kidney stones, several oncology nurses who treated Susan during her worst days of 2008 were astounded to see her in clinic talkative and getting around without a wheelchair. Just as when her symptoms have worsened making it hard to pinpoint an exact cause, I can’t say exactly why she’s doing so well, aside from the obvious lack of tumor growth. I suspect Dr Jim’s alternative chiropractic treatments have been effective. Also, her endocrinologist’s recent prescription for L-Thyroxine seems to have revved up her slumping thyroid gland and boosted her metabolism. What matters is that she’s doing so well.

Yesterday after lunch at home, Susan sat in her automatic recliner holding its two-button remote control and asked how to turn the TV to channel 4. I’m used to greeting her requests with some suspicion since she so regularly gets muddled in words, thoughts and actions. She clearly was confusing the recliner and TV remotes and probably wanted to get up to use the restroom. But she looked at the clock that read 12:45 and said she really did want to watch channel 4. I checked the guide and was astounded myself – there were 15 minutes left on “Days of Our Lives.”

People experienced with brain trauma will appreciate what a big deal this was – Susan correctly read the clock, was aware of the time of day, remembered the program that came on during that hour, and knew what channel she needed to find it. It’s easy to take for granted this level of alertness and decision-making until it’s denied. It’s a mighty contrast to the mental malaise that’s dogged her so much of the past four years. So there I was, dumbfounded, welcoming such a normal act and greatly amused that really I don’t know every detail of Susan’s life. When did she start watching “Days” again? (She used to record it on our newlywed VCR and FFWD through the tape after work. She’d discuss its plot lines with another soap opera addict – er, fan in my life, my then 80-something grandmother. Susan even taught Grandma to program her own VCR so she could tape the show and maintain the busy life of an octogenarian.) Susan is back and is not to be trifled with.

This weekend brings to mind those four years ago on Memorial Day weekend when we saw the grip of Susan's brain tumor becoming stronger while we were yet unaware. We’d stopped for steering-wheel sized pancakes at the Guasti Café in Ontario along the way to Angelus Oaks. The joy of indulging our kids in an absurdly big breakfast was disrupted by mom’s intense headache that required her to cradle her forehead in her hands a few minutes after swallowing naproxen. Later at the cabin as I greeted our neighbor Barbara Gebb on the road, I explained Susan couldn’t come out and say hello since she wasn’t feeling well, had a headache and had been vomiting. I would recall that conversation with Barbara a year later, wishing I’d known what was wrong. Her darkening progression through June 2007 led to inconclusive doctor visits, more naproxen, writhing pain, an ER, and an ominous CT scan. The upheaval had begun.

Our perspective is so different now. Susan went from fair health to near death to vast improvement. We’ve seen a deadly disease overtake our lives in crisis and slowly migrate to manageable, chronic treatment. We’ve seen five friends die from brain tumors, three we knew from church and two we met through our brain tumor community. We've seen Hank Zavaleta pass away only last month and leave us inspired by his Godly faith, courage, and selflessness during his remarkable eight-year journey. We’ve seen our doctors give their best professionally while caring personally. We’ve seen friends and family give a sum of hours and dollars to sustain us that’s beyond counting.

More than anything, we have witnessed God’s faithfulness and the unfolding of his good purposes even in the hardest times. But why should we trust God when we don’t understand? How can we have peace when we’ve clearly lost any supposed guarantee that life would be smooth sailing? We trust him and have peace because we’ve learned more of God’s true nature than we knew before. We look back and can see him attending to our every need. We look around and are surrounded by his love and strengthened with his hope. We look ahead and take hold of his promises amid the working of his sovereign will as it plays out during our time on earth. This Memorial Day we remember how this journey started and how we’ve been carried through it. We will continue to see and speak of his mercies.

God's foolish weakness and why we're not scared

The cross is a prominent image for Christians. Like the Star of David for Jews and the crescent moon for Muslims, it’s the symbol that identifies the faith. But during Holy Week, the cross looms larger, as it should. It still lingers in mind for me the week after Easter. The crosses we commonly see are ornamental, works of art or fine jewelry, so it’s hard to imagine what seeing a cross meant to a person in the Roman Empire during the 1st Century. Like the guillotine or the hangman’s noose, the cross was a tool of death by execution. If you were an ancient Roman who emerged from a wormhole into our world, wouldn’t it be a bit odd to see a cross adorning the reverent space of a church? Wouldn’t it be like seeing an altar with an electric chair or a bloody machete? It just seems a little weird.

How Jesus died is incredible – by crucifixion, easily the cruelest form of torture and death ever devised. Being nailed to a cross was a more painful and agonizing death than the tied-on method, but that’s just the physical suffering. Jesus’ spiritual suffering was more heartbreaking than we could know. There’s a glimpse of both in David’s prophetic Psalm 22, written generations earlier. You should read it.

Why Jesus died means everything. God’s holiness means there had to be a penalty paid for our sin, but his love means he would visit the sentence on his son instead of on us. Heaven’s bargain was conceived while we knew nothing about it: Jesus would take God’s wrath and pay with his life, while we would be spared that wrath and receive eternal life. Paul summarizes it perfectly, “God made him who had no sin to be sin for us, so that in him we might become the righteousness of God.” 2 Cor 5:21.

Each time I acknowledge my sin and realize I ought to die for my offense, the cross is there to declare, “No, it’s okay, you’re forgiven. The price has been paid.” Done deal – I can move on again. The cross makes sense. It was God’s tool to restore to his children the righteousness we forfeited in the garden. The cross deserves to be above the altar.

I am struck by Paul’s comments that “the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God.” (1 Cor 1:18)  As in his day, a cross can be a horrifying symbol of execution, an absurd religious object, or worse – an irrelevant logo. Paul continues on the message of the cross:

It's written, “I'll turn conventional wisdom on its head, I'll expose so-called experts as crackpots.”

So where can you find someone truly wise, truly educated, truly intelligent in this day and age? Hasn't God exposed it all as pretentious nonsense? Since the world in all its fancy wisdom never had a clue when it came to knowing God, God in his wisdom took delight in using what the world considered dumb – preaching, of all things! – to bring those who trust him into the way of salvation.

While Jews clamor for miraculous demonstrations and Greeks go in for philosophical wisdom, we go right on proclaiming Christ, the Crucified. Jews treat this like an anti-miracle – and Greeks pass it off as absurd. But to us who are personally called by God himself – both Jews and Greeks – Christ is God's ultimate miracle and wisdom all wrapped up in one. Human wisdom is so tinny, so impotent, next to the seeming absurdity of God. Human strength can't begin to compete with God's "weakness." 1 Cor 1:19-25 The Message

Nearly four years after Susan was found to have terminal brain cancer, we still “pray all the time, hope for the best, and are ready for anything.” Why? It’s the cross. We know that we’re saved, why we’re saved, and who saved us. Not only that, we’re brimming with anticipation about what he saved us for.

Think about the span of time between when Jesus was laid in the tomb and when he walked out of it. Pretend you don’t know about the resurrection. In that moment, Jesus is a failure and God is a joke. The people who believe in him are fools. But we have the gift of knowing that tomb is empty. If God can work his ultimate miracle out of the failure, tragedy, and death brought by the cross, I’d say we’re right where we need to be. Hope is marvelous.

Praying for Hank & Cris Zavaleta and family

Thanks for continuing to pray for Hank Zavaleta and family as he’s on hospice care. Cris posted on CarePages recently to say thanks “for all the kind emails, cards, flowers and food. We are truly blessed to have such wonderful family and friends.” She suggests friends who want to see Hank should do so at this time, and said he’s doing okay and sleeps a lot.

I visited the Zavaletas on Tuesday. It was good to see Hank as he slept quietly, good to visit with Cris, and good to sense the peace in their home. We still have so much in common on our respective brain tumor journeys, best of all our faith in the Lord Jesus – yet they’ve moved to a place we haven’t had to. I’m accepting that there’s a time when the fight is done, this earthly life is over, and it’s just the end. I'm accepting that there's a point when our prayers turn from pleading with God for healing to lifting up blessings of peace and mercy. I thank God for Hank, pray for a peaceful transition, and ask for God’s mercy in all of it, especially for Cris and the girls. It’s just a hard time.

I'm also accepting that just as being born is a process, so is dying. Before our kids were born, I thought a mother going into labor was like turning on a light switch. I thought one moment she was normal and the next she was racing to the maternity ward. But I observed with each of our children that labor started slowly, progressed gradually in small ways, and took weeks to build until baby day. That last part did move pretty fast each time, but it was just mother and child’s final effort before making an introduction.

Sometimes dying happens suddenly, but many times it progresses over days or weeks as one physically and spiritually begins to separate from life on earth. The act of dying is the final leg of the greatest journey a person has ever known, and while it has recognizable stages hospice workers can identify, it is necessarily a singular act made by the one passing away. It’s theirs alone. In this way, I've accepted that dying is as natural as being born. Psalm 116:15 takes it to another level, "Precious in the sight of the Lord is the death of his saints." We are eternal beings made by a loving Creator for a temporary span on the earth, made from its own dust. I've said before that death is not a problem for God. It sure is hard on us though.

There’s a link below to a video interview Hank’s friend did with him last June. If you watch it, you’ll gain some appreciation of who Hank is and catch a glimpse of his faith and courage. It’s beautiful. He talks about the choice to get busy living or get busy dying. Hank chose to live, and has lived with purpose in life. Remarkably, he also found purpose in brain cancer – to help others, to share his story, and to offer hope.

As I prayed with Cris and her friend this week, I remembered from Psalm 23 that in the valley of the shadow of death, the shadow is created by the greater light of God shining behind it. This valley may be an unpleasant place; but we don't stay there – we walk through it. And the reason we do not fear is we’re not alone. God is with us. He offers comfort and strength. In fact, Jesus defeated death and broke its hold on us. Death, our ultimate foe, truly is just a shadow. Hank and Cris have approached this time with the faith, trust, and lack of fear that comes from God. As in Psalm 23, their display of it honors him.

The fact we’re eternal beings is wired in us at the deepest level, though not everyone admits it. Fearing death is natural if you’re not sure whether you’ll spend eternity with God or apart from him. But confidence comes when you’ve placed your hope in the One you know has reserved a home for you in heaven and has the power to put you there. To the redeemed, death and dying become smaller things. It’s important to praise him who’s paid so dearly to secure our lives: 

“But I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me.” Psalm 13:5-6

Mystery solved and the art of dying

We’ve pretty well resolved Susan’s mysterious symptoms of late last month (nausea, confusion, leg swelling). Although I’ve been waiting to know the results of her latest blood work, for now we’ll chalk up the episode to steroid withdrawal. More importantly, she’s feeling better and didn’t need any intensive treatment.
 
Even though her ½ milligram of Decadron daily was already a minimal dose, evidently dropping to just two days a week was too much after 3+ years on the drug. We restored her to ½ mg daily as a precaution when her symptoms arose, but suspected a more troubling problem and had a number of doctor visits and tests.
 
She’d begun to improve by the time we saw her infectious disease doctor, who thought the steroid withdrawal scenario made sense. Her episode began about a week after we’d trimmed her dose; and tests were ruling out serious things like kidney failure and congestive heart failure. The doctor ordered another blood test to check electrolytes and confirm his thoughts. I still haven’t heard back with the results, but when she got better I didn't pursue it. Some health issues go away without a complete explanation, like my New Year’s chest pains. If you can rule out a menacing problem and just move on, that’s a good outcome.
 
I wrestle with a great sadness in the recent death of my friend and former employer, Steve Anderson, who passed away from cancer on February 3rd. We pray God's comfort for Cathy and their children as they grieve. At Steve's memorial service on Saturday, a packed congregation celebrated in a way that faithfully represented his life. As one speaker eloquently put it with friendly ribbing, Steve was a “PIL.” It's a fitting acronym. His life was marked by Passion – for God, for his family, his friends, his basketball teams, and his cars. Steve had Integrity – he was consistently the same Steve in each facet of his life. And he Loved well, as any object of his passion can attest.
 
Steve also died well. He was secure in knowing he belonged to the Living God in life and death, so the thought of dying came with peace for Steve, not fear. He still was fighting to overcome cancer in mid-January when I last visited him. But his fight came from a desire to live, not from a fear of dying. There’s a difference. 

The past few months had not gone well for Steve as his body had been increasingly unable to overcome the advance of disease and the harshness of treatment. The prospect of him passing away was sort of heavy in my mind as we chatted alone in his bedroom and he reclined under blankets to warm his thinning frame. We talked a few minutes about recent treatments, then I asked Steve how his spirit was. He said he was okay. Truly, he was. I witnessed no panic, anger, or frustration, but sensed the recognizable peace that comes from God when you know you’re in his hands. I asked how I could pray for him. He said he wanted to get well and become productive again. Steve was dissatisfied with the thought of living with a long-term illness and not being able to provide for his family. He wanted to live. We prayed he would live. But he knew dying meant he'd be with the Lord. His faith assured him it would be a greater existence.
 
Last autumn I read a remarkable article in The Wall Street Journal called, “Halloween, A Christian Perspective,” written by Rob Moll and taken from his book, The Art of Dying. It's a book I am now more eager to read. Moll used the occasion of Halloween to point out that our present age with its deep fears of death and dying was preceded by ages when Christians practiced the art of dying. One 17th Century author wrote a book on “holy dying” that was a natural extension of living a good life. Methodists in the 1800s called it “the happy death,” where death is unwelcome as it is now, but expected; so we may as well live to prepare for it. Moll shares an example:

In his book "Facing the 'King of Terrors,'" the historian Robert Wells quotes the 1824 obituary of Daniel Vedder, a man in Schenectady, NY: "His last days exhibited a scene peculiarly striking. . . . He expressed the most cheerful resignation to the will of his heavenly father. . . . It was observed that as he approached the hour of his death, his views of divine subjects [angels and spiritual beings] became increasingly clear."

Vedder's death illustrated the basic elements of the beautiful death. In it, family, friends and neighbors surrounded the dying person. He asked forgiveness for wrongs he had committed and forgave those of others. He confessed his love for each person and offered last words of advice or encouragement. Lastly, the dying person expressed his belief in life eternal and sometimes even described visions of that future realm. Loved ones — whether family, neighbors or church friends — were expected to be present as comforters and witnesses.

Jesus' work on the cross defeated death for us. The death we no longer have to fear is worse than annihilation – it’s an eternally regrettable separation from God. Jesus’ resurrection secured eternal life for us and earned us a place with him by grace. Until we cross over to that place and the God we will behold replaces earthly faith, what Jesus did gives us hope. Our hope makes a beautiful death possible. Our hope was strength for Steve Anderson as he was dying, and brings comfort into the void of his absence. Our hope is absolutely life-giving for Susan, our family, and me as we continue to navigate her brain tumor journey, and it makes us always thankful for the gift.  

You can read Rob Moll’s article here: http://robmoll.com

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!

Updates: Hank and Susan

Here’s good news from Cris about Hank:

Hi everyone, Sorry for not writing sooner, just got caught up in the good news and decided to get in the holiday spirit. With the help of a good friend, I got the Christmas lights up while Hank had his vaccine up at UCLA today. So excited my house sparkles!!
Anyways, Hank’s MRI was stable - Yay!! So, he will start his infusion of Avastin next week and he will be getting it every other week for as long as it keeps working. He is also getting the vaccine, so with both treatments we just pray that he will continue to do well.
Again, I want to thank everyone for you prayers, love, kindness and your unconditional support. Oh yeah, and all that great food from LBFD, you're AMAZING. We love you all soooo much.
Take care and enjoy the simple things of the holiday.....each other. Remember...Jesus is the reason for the season.
Love to all, Team Z

We thank God for Hank’s progress. We’re also thankful Susan continues to do well. November was blessedly quiet for us medically. She has regular periods of headache and tiredness, but gets relief from rest or meds. We’re progressing on her steroid taper and will have her Decadron dose down to 0.5mg daily this week. Past efforts to get free of the steroid have been interrupted by other medical events that required higher doses again, so we’re hoping this one goes well. 

Thanksgiving brought us to relaxing hours with family in Lakewood and Angelus Oaks following best-ever Thanksgiving worship at Emmanuel. Every year is the best ever because we see all the new ways God has been faithful. Like Psalm 92 says, “It is good to praise the LORD and make music to your name, O Most High, proclaiming your love in the morning and your faithfulness at night.” It IS good to give thanks to the Lord. Observing that his mercies truly are new every morning – that situation I feared actually turned out okay, or that hard time came attached with unexpected blessings – reminds us who is in control, that he is good, and his goodness is for us.
 

Most days may be ordinary and forgettable, but Thanksgiving Day allows us to take stock and sum them up. Thanksgiving brings perspective. We realize strands of time may flow by unnoticed, but seeing them strung together year by year, colored with reminders of God’s loving presence and faithful acts, a pattern emerges that encourages our faith. We see God weaving our lives into a tapestry of his careful, creative design – always unfinished, but always more beautiful. We’re thankful.

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.

Feeling fine

In spite of occasional spells of tiredness or pain, Susan feels well these days.  She’s been diligent about eating properly, so her blood sugar level has measured well below 150 for most of the past few weeks.  It’s amazing to test her glucose after breakfast when she has a bowl of cereal once a week instead of her usual eggs – cereal sends the level higher and proves the benefit of low-carb eating.
 

In discussing results of the bladder pacemaker during our follow-up urology appointment, Dr Kim decided the test was successful. Even so, Susan probably won’t get the permanent device since its manufacturer has not approved it when having MRIs, a frequent event for her.  When the issue came up just before surgery, I wondered why we were doing the procedure at all and why we didn’t know about the conflict earlier.  The company rep said there’s no known problem with the device, but it had not been specifically approved for use with MRI.  The trial device posed no MRI risk and would provide good information, so we went ahead.  Since then, Susan’s specialists have been chatting about the trade-offs; but I suspect we’ll be safe and pass on the permanent device.  She’s doing okay right now in that department anyway.
 

She’ll have an infectious disease follow-up next week and her scheduled brain tumor check-up after Labor Day. We’re ever in the Lord’s hands.
 

I often say Susan is the sweetest person I know. She handles her illness bravely, repels the urge to complain or have a sour attitude, and is always concerned about the welfare of others, especially our family. Her desire to do things right and obey the rules makes her a gracious patient.  Compliant by nature and having lost a good deal of independence, she sometimes even asks if it’s okay to hold her fork in her other hand.  My Susan is just so sweet. 
 

Last night as I soaked in her adorability, I told her again that I love her. She echoed her feelings to me.  Then she said she’s become more aware of feeling surrounded by the love of others, more than she has before, and that she’s feeling loved by people who never may have expressed it before. I agreed that lots of people love her and are showing it in many of wonderful ways. We noted the paradox of an illness like GBM – that it connects you more deeply to others than when life was normal and busy and overlooked.  We agreed that if cancer creates more meaningful relationships, that’s not a bad thing.

Resting at home

We finished a long day Friday in the hospital time warp, finally having Thursday morning’s MRI on Friday at 4pm, getting discharge instructions at 6:30, and actually leaving UCLA at 9:30.  Susan is resting at home now, receiving IV antibiotics and oral antivirals for the next several days.  She’s still tired and headachy as she recovers.  This episode will be summed up under the immune-compromised department, with dual infections of the nerve roots with shingles, and the urinary tract with e. coli or proteus or whatever the little bugger was.  Friday’s MRI was clear of any new threats for bleeding or aneurism, so we assume the blood in Susan’s spinal fluid was from having to poke her several times and manipulate the needle to get fluid moving.  We remain thankful our meningitis concerns were a false alarm that led us to discover and treat the real issues.
Our next steps will be follow-up visits with various doctors to treat infection, kidney stones, diabetes, and the brain tumor.  I think that about covers it.
 

While in the ER this week, a doctor from the internal medicine team wanted to clarify Susan’s “code status” after reviewing the advanced healthcare directive we have on file.  Thanks to Attorney Mark Doyle, Susan and I completed our will and trust documents in 2003. They include a power of attorney so each of us can act on the other’s behalf, and advanced directives that outline what life-saving measures we’d like performed if we’re seriously ill. Our chat with the doctor brought the idea from the legal to the practical. 
While the document dictates Susan’s desire that no extraordinary measures be taken to prolong her life if there’s no hope of recovery, the doctor needed to know what they should do if she “coded.”  Should they perform CPR? Should they intubate for breathing? Defibrillate her heart? Well, yes, of course, they should try to save her life.  These actions, the doctor pointed out, could leave Susan alive but unresponsive and lead to another decision families don’t like to make – when to “pull the plug.”  Wait – that’s different.  What we really want is to be revived if everything’s going to be okay afterward, but not if it won’t.  That’s the document we want to sign.
So with a brief incursion into the world of bedside decisions and medical ethics, Susan and I clarified it for the doctor – we want try to save her life. Her status is “full code.”  This is just another instance of our lame attempts to control the uncontrollable, leading us to recognize our lives are in God’s hands.  I returned to the document where all this stuff was already worked out and once again found the real peace of mind we seek, “All the days ordained for me were written in your book before one of them came to be…Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139: 16, 23-24.

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.

Kidney stones maybe and Peace definitely

One of Susan’s most persistent complications has been infection, from the fungal infection that caused meningitis to the various bacteria that have affected her urinary system repeatedly.  The return of proteus last month prompted another course of antibiotics that in the past has knocked back the problem pretty well.  This time, however, the infection returned within weeks and got us back to UCLA on Tuesday for an ultrasound to learn more.  The radiologist reported a high likelihood of a stone in her right kidney, most likely what’s called a struvite stone that can form due to a proteus infection.  Her infectious disease physician said such a stone will continue to cause infection, so it sounds like a vicious loop that needs an off-ramp.

Our next step is to meet with a urologist at UCLA and for Susan to have a CT scan of the urinary tract that will confirm or rule out our suspicions.  Judging from her persistent symptoms, the kidney stone idea makes sense.  If confirmed, I’m sure the type, number and size as well as Susan’s overall condition will drive a treatment decision; but we’re not ready for that conversation yet.  I hope we’ll know more soon.  Meanwhile, we’ll be back at UCLA next week for her scheduled MRI and oncology visit to update the brain tumor outlook, hoping at least for continued stability.
 

While chatting with friends at church last week, we spent a few minutes with two ladies who also have been facing some of life’s great challenges and the portent of change that threatens to follow.  One recently recovered from surgery and continues to regain her strength.  The other is caring for her husband who’s been battling complications from cancer treatment.  We have in common the upheaval of illness and treatment, the challenge of rallying to overcome, and the overwhelming peace of God who helps us.  Actually, since each of our health challenges is so different, God’s practical peace is our true bond.  Each of us has tasted it, touched it, seen it, and has experienced the remarkable sensation that somehow we’re surviving (even thriving) because of God and his peace.  Each of us is learning to trust God more, and we all agreed with amazement that the hard things we’re enduring are the very things that are teaching us to trust him. 
 

Our journey that began with the possibility of Susan having breast cancer in 2005 continues to be one of grappling with mystery.  Not the why – we abandoned that dead end a long time ago because the answer is mostly unknowable on earth and is not so important anyway.  We’ve grappled with the what and the how.  What are you doing, Lord?  How shall we respond?  The mystery is worth working out because at the center of it is the living, loving, almighty God who desperately wants us to know him, who has resources to meet our deepest need, and who will use any circumstance to get our attention.

Hard circumstances, then, are not a life-shattering trigger for despair but the stuff of life itself – a gift to unwrap and a glorious treasure to discover.  It's a weird thought, isn't it?  But I’d rather embrace the circumstance, take on the adventure, and find the prize.  Why should I fight it out of anger or worse yet, ignore it out of denial?  The tragic side of tragedy is to leave the gift unwrapped and God’s treasure unknown.

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!

More breathing room?

The past several weeks have provided more breathing room for Susan and me as we enjoyed an unforgettable 25th anniversary stay in Laguna Beach, more time without complications, and even a trip for her to Mammoth this week with family.  Our brief stay in Laguna offered pristine springtime weather, hours spent on the hotel balcony entranced by the seaside panorama, and a chance for Susan to have her feet in the sand again.  Our 9th floor room brought us eye-to-eye with seagulls and was a perfect perch to watch pods of dolphins, surfers, beach walkers, crashing waves, and even a couple of migrating gray whales.  An epic weekend would not be complete without a Jacuzzi bath for Susan (years since the last one) that rejuvenated her. 

The weeks since then found us resuming Susan’s blood draws leading up to next week’s UCLA oncology visit, gathering with some of my friends from high school, celebrating Good Friday and Easter with our church and our family, and getting Susan, Lexie and Adam away to Mammoth with the Rombergs.  Austin spent Easter vacation working on a mission trip to an American Indian community in Arizona.  Although the road trip was a bit taxing, Susan did well in Mammoth and had a pretty smooth week.  Lexie made me proud by taking great care of her mom and working hard to make sure she stayed safe.  I put in some longer hours and was able to focus on my work more than usual, although I missed everyone, Susan especially.  Even so, I can attest to the value of respite for the caregiver.  My time with her following our break finds me more relaxed and patient, armed with a deeper well of compassion and a better perspective than I had a week ago.  

But Susan hasn’t been doing well this weekend.  She’s tired, confused, and generally out of it.  She’s had several spells of nausea or vomiting at mealtime, so I’m on the alert for more signs of trouble.  She’s been headachy but has no fever.  After a couple of long naps yesterday, she seemed a bit better last night – yet the nausea returned this morning as we prepared for church.  I’m keeping her home to rest and will continue to watch her closely in case there’s more going on than just the effect of traveling and altitude.

Our Silver Anniversary naturally leads us to reflect on our lives as a couple and celebrate the gift of spending most of our years on earth with each other.  It’s a unique experience.  Spending a lifetime as husband and wife is different than being with a friend, companion, parent, or sibling.  Why?  Each of these relationships has a certain level of familiarity, compatibility, trust, and common interest that creates a bond deeper than a casual acquaintance.  But marriage goes deeper still, involving a level of physical, emotional, and spiritual intimacy unlike any other relationship.  In the most significant way, it satisfies our human desire to know and be known.  This is what God had in mind for us and is what Jesus spoke of in Mark 10:7-8, “’For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh.'  So they are no longer two, but one.”  This is the gift Susan and I have enjoyed so far for 25 years.

I’ve said before that Susan is probably the most gracious patient on the planet.  She has needs but does not make demands.  She hates the thought of being a burden and apologizes when she feels she imposes on others – which is frequently.  Her attitude compels her to try to do as much as she’s capable of doing and just makes it easy to care for her.  Her positive outlook prevails.  She’s confident today is better than yesterday, tomorrow will be better still, and God will fix what’s wrong either while she’s alive on Earth or when she’s with him in Heaven.  

Yesterday when I told her I love her like crazy, she said she’s not sure why since she’s not able to do anything.  She said she can’t love me very well.  I assured her our love is not about doing, and that she loves me perfectly.  I know and feel her care for me in whatever way she expresses it.  But more than that, just her being with me becomes our unity and is itself the expression of our love.

On comfort

Reflecting on the THING we've been living with for 2 1/2 years:

Oh Lord, what comfort do I have on earth besides you? You have saved my soul.

Apart from you, the stress and sameness of daily life would be pure drudgery. What would be the value of my work if that's all there is – work? Even the things I buy with the money I earn lose their appeal. That once-new car already looks shabby.

I could spend lots of time and money to make myself look marvelous. Maybe that would make me feel good. I could work out, buy expensive clothes, support the cosmetologists, and even go under the knife. But could I stop the decay at work in my body? That once-new car and I are in good company.

Without you, Lord, my heart would be pierced when the doctor tells me I'm at death's door. A good doctor might help me out of a crisis. I might go on living for a while, years maybe, but could he keep me out of the grave altogether? Either he or I will get there first. And I would despair if I thought I would cease to exist. All my life I've been connected to family, friends, my neighborhood, the beauty of this world. What if I were cut off? Disconnected forever? How could I bear the thought?

But you, Lord, offer comfort like no other. You play by different rules. I may work hard and struggle with drudgery; but you assure me a better life awaits me in heaven. I may grow old over time – and look it. But you remind me that true beauty goes beyond appearances, and you reveal time in light of timelessness – my inheritance. And when it comes to sickness and dying, you are the Great Physician. There's nobody like you. Who else could tell me not to be afraid and then give me true peace? Who else could offer me eternal life and back up the promise? Now I have a different viewpoint. My huge troubles have become harmless thanks to you. What comfort do I have in this world besides you? You have saved my soul.

Chemotherapy, Round 3

Yesterday was co-pay mayhem following Susan's blood draw at UCLA at 7am, MRI at 8am, and oncology visit at 9am. Then we winged it down to Torrance for her dermatology exam and back up to Westwood for an infectious disease follow-up. The only actual infectious disease I noticed was LA traffic. So much schlepping in one day – I ought to have my skin examined. Wait, we did that. The schedule worked out perfectly until our first appointment. It took longer than usual and cramped our timing. Thankfully, the other two doctors accommodated our delays. We pulled into our driveway by about 5pm with Susan mostly nap-less and dog-tired.

Her MRI revealed slightly more new tumor growth than in August, confirming her need to begin a third round of chemotherapy, so she begins oral CCNU (Lomustine) tonight. We spoke at length with Dr Nghiemphu about Susan having a biological agent called XL184, but were put off by its similarity to Avastin with the potential to cause another hemorrhage. We might have decided otherwise if the new tumor tissue were faster-growing and had lots of blood vessels in it, but we think CCNU will handle the need at this time. XL184 sounds promising for high-grade tumors since it cuts off blood flow like Avastin, plus it inhibits certain chemical receptors involved with the cancer. I deeply respect Dr Nghiemphu's approach in making recommendations like these. She informs and explains, and outlines potential benefits and risks - but since an outcome is so uncertain, she stops well short of dictating a treatment. Instead, she invites us into the push/pull of a complicated decision until we arrive there together. The quality of her care is so good – and gives us confidence and peace of mind in the process.

Our dermatology and infectious disease excursions came about because Susan developed two suspicious sores about two weeks ago. They emerged quickly and had too many cancer-like symptoms for my comfort, especially since Susan had a pre-melanoma removed about 5 or 6 years ago. Thankfully, they've already begun to heal and evidently were not caused by anything internal, although their origin is unknown. We walked away with a really good antibiotic cream from the dermatologist and the availability of the ID doctor at UCLA in case we need him.

Lord, sometimes I'm tempted to ask why we have to walk this road of suffering, but I hold back. I know "why" is a mystery on this earth. It may not matter in Heaven. This road is crowded - I'm sure if I knew how many were making their way along, I couldn't bear it. Some people have it way worse than we do, so how can I complain? Some people's whining seems louder than the size of their troubles; but if they've reached their limit, how could I tell them to be quiet? It's better not to compare.

I remember the days before disaster struck. Susan and I were a team in marriage, as parents, in ministry, and in life. Our activities were intertwined in the fullness of those pursuits while the years tumbled out too quickly for us to notice – date nights, anniversaries, soccer teams, kids club, slumber parties, homework, bible studies, dramas, choirs, board meetings, work days, ski trips, the occasional doctor visit, and lots of fun along the way. How quickly life got up-ended! Our game board got turned over; and many things I thought were permanent simply fell off. I didn't know life could be so basic. Alive. Today. Each other. You. At times, it seems that's all we've had. Mostly though, we live somewhere in the middle – date nights have become doctor appointments, that sort of thing.

We grieve at losing the life we had and we grieve the absent promise that life will return to what it was. But what's surprising is that life still offers fulfillment and satisfaction. We have hope, joy, and peace, thanks to you. Somehow, we understand everything is ok. And we know you better. Knowing you provided for us while things were going well was nice, but having you provide for us while we suffer is phenomenal. There's something about your comfort now that tells us you love us, but in a way we couldn't notice until so much had been taken way.

Lord, you know we just met some new friends who learned their son had a brain tumor when he was just ten months old. That was their on-ramp to the road of suffering. You know our other friend just found out he has cancer after his surgery last week. That was his on-ramp. You know about my co-worker's friend whose 22-year-old daughter just died in a 405 Freeway car crash, leaving a toddler without a mom. Her family quickly merged onto the road of suffering. There are so many people on this road – in fact, I'm pretty sure every person on earth will take one of the on-ramps at some point. It's hard, Lord. Upheaval. We can't know why it happened or how it will turn out. And there's no off-ramp in sight. But you know all these answers – why the suffering, how it will turn out, where the road leads; and you choose to keep them hidden from us. That's ok, really, because you know what's best for us. Please help me to focus on you and not our circumstances. Help me to trust you with the mystery.

More infection, persistent weakness

This is a rare Sunday morning when Susan and I stayed home from church. She has headache and abdominal pain and needs to rest. Days like this seem to come and go more frequently and interrupt Susan’s otherwise cheerful spirit and initiative. Her funk was more intense a week ago on Saturday when I became convinced infection had returned. I spoke to Dr Leia about Susan’s confusion, weakness, and pain (but no fever), so she prescribed another round of oral antibiotics and suggested we get some labs done in a few days. We still had some Cipromycin on hand from last time and were able to get her started without having a prescription filled. By Tuesday, Susan’s response was mixed – improved memory strength, and mental status, but with periodic slumps in each area. On Wednesday, Dr Leia ordered labs for blood and urine and extended the Cipro course to seven days. The lab results showed slight infection, a reasonable fact since five days of antibiotics knocked it down some. Right now we’re stumped about her persistent symptoms and realize there are several factors at work, as always, like the effects of her hemorrhage, infection, or possible tumor progression. We’ll know more about all of it this week when we go back to UCLA for more labs, an MRI, and a visit with Dr Leia.

Tomorrow will be our 24th wedding anniversary. We got married in 1985 between the winter and spring quarters during my first year after transferring to UCLA. I was sort of an oddball student since I commuted to campus from Bellflower, wasn’t involved in activities there, and was married by my 22nd birthday. After I had proposed to Susan in 1984 (at Tommy’s in LA so she wouldn’t expect it), we didn’t want to wait until summer of 1985 to get married, so UCLA’s calendar determined the date – Saturday, March 23, 1985. I rushed out of my last final exam on Friday to make it to our wedding rehearsal that evening. I think I got a “C” on that one and felt satisfied I had a good excuse in having my thoughts on bigger things.

As I said to Susan the other day, twenty-four years is almost a long time. Next year will be our Silver Wedding Anniversary, which is a year later than almost a long time. In late 2007, someone generously and anonymously gave us a gift certificate to stay at the Surf & Sand Hotel in Laguna Beach, a perfect thing to bank for a special occasion like our 25th. But since one of us has a malignant brain tumor, shouldn’t we use it now? You know, “carpe diem,” and all of that? We decided to wait and have something to look forward to. She’s made it this long.

The Word of God is so much my food for life. I need it for guidance, strength, counsel, and to slap me out of foolish thinking. During this season of Susan’s illness, we’ve had our lives emptied of things we thought were important and even indispensable. With life becoming more basic and undistracted, I realize how temporary we are, how small our efforts can be, how quickly we exhaust our strength, and how little we truly understand. This truth came alive recently as I read and rested in Isaiah 40, a passage that has great importance for me. In huge contrast to our lot, verse 28 says,

“Do you not know? Have you not heard? The Lord is the
everlasting God, creator of the ends of the earth. He will not grow tired or
weary, and his understanding no one can fathom.”

Wow. My life is but a breath on this planet – but he’s the everlasting God. I can produce nothing that will last, really – but He’s the creator of the ends of the earth. I’m often wiped out by 9pm – but he will not grow tired or weary. I don’t know what our cancer journey means, why it’s happening, or how it will turn out. But I am getting to know God better. His goodness is overwhelming, and His understanding no one can work out, think through, or comprehend.

Coming home

Susan continues her improvement and will be discharged from the rehab hospital next week, returning home for the first time in over three months. We’re very grateful and a little apprehensive. Susan will return in much better condition than in July, when weakness intensified by hydrocephalus, infection, and steroid-induced muscle loss made her unable to walk and required 100% help with everything. Since I haven’t been with her recently for more than 5-8 hours at a time, I’ll soon learn just how much she’s improved. I’m arranging for care at home to be provided by several sources, including a part-time paid caregiver. Susan still needs 24-hour supervision and help to stand, transfer, walk, and do other basic activities. She may be able to handle the multi-disciplinary therapies with Rehab Without Walls like she had a year ago, but not until she’s able to handle three hours at a time. Their evaluation on Thursday didn’t go well since she’d been up all day, had a full therapy session, and needed to sleep.

Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.

I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”

This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.

“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.

“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.

The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).

This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?