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.

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.

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.

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.

What brain tumor?

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

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

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

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

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

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

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?

Another hospitalization

Fri 08/24/07
Susan was in extreme pain and crying once again at midnight, a couple of hours after going to bed. I gave her valium instead of the usual vicodin to try easing her pain. Still hurting at 2am, I gave her more vicodin and noticed she felt feverish as I held her. Her temp was 102F, a sign of trouble combined with inconsolable pain. A nurse I called at UCLA said I should get her to an ER right away. I called for an ambulance when I couldn't get Susan to walk to the car – she was transported to LB Memorial.

Sat 08/25/07
The staff at LB Memorial ER gave Susan morphine for pain and conducted a series of tests, including a blood culture and a lumbar puncture (spinal tap). Even with morphine, she still had moderate pain. Her cerebrospinal fluid had a white blood cell count of 1970 – normal is 0 to 5. She was diagnosed with meningitis, given IV antibiotics, and transported by ambulance to UCLA, arriving around 3pm.
Susan was placed in an isolation room at UCLA Med Center ER as a precaution against infectious bacterial meningitis, followed by more antibiotics, blood tests and pain meds. A neurosurgeon lifted the isolation order around 7pm and admitted Susan to the 7th floor neuro unit about 9pm, then did another lumbar puncture at 11pm to test her fluid.

Sun 08/26/07
Breakfast was Susan's first meal since dinner on Friday, a welcome event. She continued on antibiotics and pain meds, and another blood culture. My sister Becky spent the afternoon visiting and had dinner in Westwood with the boys and me.
We had a unusual moment when Susan's surgeon, Linda Liau, was featured on a channel 2 news segment about the experimental vaccine we're hoping will be available to Susan. The timing was just surreal – Susan was at the hospital under treatment by the doctor who is on TV discussing the treatment she may receive. 
You can watch the video at http://cbs2.com/video/?id=46462@kcbs.dayport.com&cid=71.

Mon 08/27/07
Susan had another night punctuated by pain, getting relief with vicodin and dilotid. Her blood cultures need to continue growing over 72 hours to rule out bacterial meningitis. Meningitis is inflammation of the membrane surrounding the central nervous system, and its bacterial form is serious and can be deadly. The aseptic or non-bacterial form is a mostly harmless, sometimes follows brain surgery, and usually corrects itself in 5-14 days.
She underwent an angiogram in the afternoon under general anesthesia to investigate a dissection or tear in the artery that feeds the base of the brain, a condition that may have contributed to her previous stroke and poses a risk for future strokes. We are awaiting results and the medical team's discussion of possible treatments.
Susan also had a PICC line (peripherally inserted central catheter) placed for prolonged IV access. Her right arm is unavailable for needle sticks due to risk of infection since she had a lymph node removed last year. Her left arm has been punctured so often for two months that scar tissue makes IVs a challenge. The catheter prevents the vein from collapsing, can remain up to 30 days and allows injections and blood draws without new punctures. Everyone is happy about the PICC line.
Dinner was her only meal of the day and preceded a solid night's sleep, such as it is with 2-hour check-ups for vital signs. She was still in considerable pain and received more dilotid and vicodin. Radiation and chemotherapy are on hold for now until next week.

I keep revisiting the text of Psalm 3 (above) in the words of a song our choir has sung: "Many are they increased that trouble me, many are they that rise up against me. Many are they that say of my soul, 'There is no help for him in God' – but thou O Lord are a shield for me, my glory and the lifter of my head..." The many complications of Susan's condition are starting to feel like being caught in a tornado preceding an earthquake followed by a hurricane. What's next? Hot lava? But God continues to lift our heads. Thank you, Lord.

Tue 08/28/07
Susan has been diagnosed with fungal meningitis, an uncommon form that usually occurs in people with compromised immune systems. In her case, the infection is caused by a yeast called candida albicans that is airborne, is prevalent everywhere, and likely was introduced during one of her invasive procedures or surgeries. She experienced most of its symptoms (clouded by her ongoing condition): headache, confusion, tiredness, stiff neck, irritability, and fever. I'm glad we got her hospitalized and diagnosed since its complications can be serious and deadly. She'll be treated with an antifungal IV; treatment can take 2-4 weeks as fungi are harder to get rid of than bacteria. Her hospitalization is open ended at this time.
She had another lumbar puncture this evening to analyze cerebrospinal fluid for one more baseline comparison prior to antifungal treatment.
We had some good news today – yesterday's angiogram came back negative – evidently there is no tear in the artery that feeds the brain stem. I still need to find out why they thought there was one initially; but I'm glad to have the issue resolved. Thanks to God.

Wed 08/29/07
Today was a good day as Susan experienced a dramatic lifting of meningitis symptoms while receiving anti-fungal medication. She was stronger, more alert, more energetic and in good spirits; and was able to have a bath, walk around a bit, and pass some time sitting in a chair. I enjoyed her sassy attitude. When bending her left arm too sharply caused her IV alarm to sound, she straightened her arm and told the machine to be quiet. After it stopped a moment later, she said, "See, I've got this whole thing under control."

Fri 08/31/07
Susan's hospitalization has been a see-saw experience of come-and-go pain amid diagnosis & treatment for fungal meningitis. Apparently, her body was susceptible after being on the drug decadron since late June. She's had three spinal taps in nine days to track the infection. Conflicting results this week had doctors waffling on bacterial vs fungal diagnoses while administering a shotgun of various IVs with antifungal and antibiotic medications. Her condition improved as they've narrowed the treatment to the two antifungals effective for candida albicans. The result, thankfully, has been less pain and confusion with better general orientation and mood.
The angiogram results to investigate the artery leading to her brain was negative for a dissection or tear. The spot they saw on an earlier MRA was more of a fold in the vessel. The angiogram also shows that the left fork of the artery that feeds the brain is congenitally narrow, a factor that could have led to her stroke.
We learned Susan is not eligible for the cancer vaccine clinical trial since she had breast cancer last year. Dr Liau said the trial is in pivotal phase 2, meaning there's a possibility for FDA approval prior to phase 3. Once approved, Susan can have the vaccine – that's our next hope.
During a particularly trying week attended by pain and uncertainty, the Lord has brought us to a place of providing what we need for each day. Tomorrow is out of reach and remains free of presumption. Somehow for today, we're ok.

I have enjoyed my summertime walks around the now-quiet UCLA campus, retracing my steps as a student over 20 years ago. I follow myself as a young adult among crowded lecture halls, busy pathways, and quiet study sanctuaries, tracking the images as they echo around the buildings in front of me. I was 21 when Susan and I married after second quarter finals in March of 1985. I was disconnected from student life as a married student who commuted to campus – but I was satisfied. Susan was my girl; church my fraternity; and UCLA my university. With no money in the bank, we were rich in hope.
Walking south, away from college memories and toward the medical center building, I was jarred back to the reality that my bride is lying in there with the remnants of a malignant brain tumor. Past and present collided violently in my mind as I walked. But my steps led me back to the wife I love – and we're together for another day.

Sat 09/01/07
I brought Susan a smoothie and sat with her as we watched college football on TV in her room. Being fans of the sport, we enjoyed watching the games and the sense of normal life that came with the afternoon.