Great comfort at Christmas

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

Hanging tough in brain tumor world

Susan's condition has remained stable over recent weeks with some improvement in strength. Although she needs full-time care and assistance to walk and accomplish daily activities, she can more easily lift herself from an elevated chair and handle small stair steps. We're so grateful to enjoy another period without complications, infections or hospitalization. More importantly, I'm amazed at Susan's attitude and outlook, and her tenacious inner strength. She's gracious when needing help, positive that she's doing better today than yesterday, and usually ready to kid around and be sassy. On Sunday as we were leaving between church services, our friend Randy drove up the crowded aisle and asked if he could have our parking space. I shut her door and I joked it would cost him five dollars. I got in the car and told Susan about it. She said, "That's good. You gotta get 'em when you can."

Every Christmas I look forward to when I once again realize the magnitude of God's gift to us in the birth of Jesus. Sometimes it's in a scripture, or in a song; in prayer or in hearing a sermon, or in a God-breathed human encounter. I'm still soaking up this year's moment. Todd VanEk had a word in his sermon Sunday on Luke 2:12 where the angel says to the shepherds, "This will be a sign to you: you will find a baby wrapped in cloths and lying in a manger." Everything about this announcement shattered people's expectations about the coming of the King of Kings. The news was given to shepherds, who were poor and marginalized. The King was a baby – weak and dependent, clothed in rags, and lying in a feeding trough for livestock. The urine and manure may have been at a safe distance, but the smell wasn't. Then Todd brought the zinger. Jesus was born into a mess. The "sign to you?" There is no human mess Jesus is not willing to enter, bringing healing, strength, grace, and mercy. Wow. That was it. That's the room in my heart I could prepare for Jesus this Christmas, and he came right in.

I was not prepared for the living example of Jesus' love that would follow just minutes later, after church. The woman sitting in front of us with an infant turned out to be our friend Patti. I did not know she and her husband were expecting. We learned they stepped in as parents of their relative's baby boy after he suffered abuse and broken bones in only the first six weeks of his life. He's nine weeks old now. They've had him for three, and are willing to adopt him if the legal arrangements can be made. For now, these 30-something Christian parents are adjusting their lives, their family, and their careers to make room for another baby boy born into a mess. This is selfless love – astonishing and familiar. It's a fitting display of God's Kingdom that arrived on Earth with baby Jesus in Bethlehem. As we prayed with tears, I could see the Spirit of our Savior bringing healing, strength, grace, and mercy to this baby and to this family – just like Jesus has always done. I'm so glad to have met him again.

Thanksgiving

Today we are thankful for family and friends, our country that sets aside a day to be thankful, and our God who loves and cares for us so well. We are thankful for Susan's oncology visit yesterday and another good report. Her MRI once again showed no tumor change and a smaller blood clot than six weeks ago. An area near the tumor lit up more than usual with the contrast agent; but Dr Nghiemphu believes it's due to Susan's lower dose of Decadron, the steroid that counters brains swelling. We will continue her slow Decadron taper, cutting her 2mg dose in half every other day. Susan's blood counts look okay, so she's cleared to have her third cycle of CCNU chemotherapy tonight – quite the Thanksgiving dessert.

Overall, her condition has improved slightly. She has better strength from more consistent therapy with Cynthia, although she still needs lots of rest, needs an occasional recovery day, and struggles with word-finding and vision when she's tired. Also thankfully, she still enjoys being sassy and threatening me with bodily harm if I don't treat her well.
We are thankful for glorious Thanksgiving services this year at church, celebrating the God who has given Emmanuel a rich heritage, an exciting mission in the city, and a promise-filled future. We heard amazing stories of grace, salvation, and transformation from new and long-time Christians alike. We were drawn into rich worship with the worship team and 80-voice choir, once again solidifying Thanksgiving as my favorite church service of the year. Each year as we reflect on the service over Thanksgiving dinner, I wonder how next year could be any better. Somehow, the next one surpasses the others. God is so good.
This morning as we were getting ready for church and Lexie's radio carried Christmas music throughout the house, I recalled hearing recent complaints about Christmas decorations and music invading too early, even closer to Halloween than Thanksgiving. No one can deny the commercial side of Christmas and the hollowness of the holidays when reduced purely to profiteering. But what struck me this morning was the joy of the music, pent up for 11 months, once again arriving to remind the world God sent his Son to bring life and hope to a people trapped in darkness. This Christmas, may he find a place to abide in every heart.

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.

A transitional week

Susan resumed the help of a full-time, paid caregiver last week after months of having weekday care by our amazing network of friends and relatives. As her physical demands have increased recently, we had Cynthia from Sheridan Care come in three mornings a week. Then with concern for everyone's safety, we expanded it to five full days. These are days of living on grace – the grace of volunteers who helped Susan so well again for months, and the grace of Susan's parents who are providing the full-time care. I'm also grateful to our sister-in-law Dorothy, who worked hard organizing the volunteers amid lots of schedule changes. Cynthia emigrated from Belize in the 1980s and brings a terrific balance of expertise with a light-hearted nature and Caribbean accent. True to our experiences with Sheridan Care, her intense focus on Susan's needs gives me great peace of mind. They hit it off during a brief stint a year ago, so Susan enjoys having Cynthia's help again.

People often ask how Susan is doing with the complications she's had along with her brain cancer treatment. Tumor-wise, the one MRI she's had since starting her new round of chemo this fall showed no change, so no growth is a good thing. Her next scan and oncology visit will be Thanksgiving week. Regarding January's brain hemorrhage, the blood clot and its effects have continued to shrink. Also, she's had no infections lately, no build-up of fluid that leads to hydrocephalus, and no brain swelling. Each of these has been a serious issue in the past, so it’s a relief to have them laying low. We have begun tapering her off of steroids again, ramping down from 4 to 3mg of Decadron in October and migrating to 2mg per day this week.

Susan’s vision has been troublesome since her occipital lobe stroke in 2007. Aside from the miraculous event that summer when her ability to see color was restored during prayer, her right-side blindness persists. After she complained that her eyesight seemed to be getting worse, we ordered an MRI of her eyes and optic nerves in September. Thankfully, the scan ruled out any tumors or other physical damage in those areas. Our next step was a visit last week with her optometrist, Dr Eric Ikeda. During the exam, Susan had considerable difficulty with aphasia (word-finding), something that happens frequently. It seemed like every letter on the chart was an X. Unfazed, Dr Ikeda continued the exam using other techniques and gave us good news – her vision itself is not damaged. She's had some visual change since 18 months ago, but only what's normal for her age and not enough to require new glasses.

Susan’s aphasia and Dr Ikeda's neurological specialty provided insight for us. When she has trouble seeing something, it's partly because her brain struggles to attach the right symbol or language to the image her eyes are seeing, so she has trouble recognizing it. She has trouble “seeing” even though her eyes are okay. In other words, fatigue leads to brain overload that makes her not see well. Even so, Dr Ikeda noticed how well she’s learned to compensate for her loss of visual field by scanning frequently from side to side. We’re glad to resolve the question and gain understanding about her vision. In spite of a frustrating condition for her, Susan handles it like a trooper.

After recently reconnecting with Morris Chapman, a long-time friend from my days at Maranatha! Music, I played his ­Gospel Praise CD on Sunday afternoon. I enjoyed once again how well Morris evokes a spirit of worship, especially on that album. Susan was caught up in it also as she reclined in the den. She asked for more “dark brown” music, so I went for it with one of Carlton Pearson’s Azusa albums. When I turned the volume down a bit so the neighbors wouldn’t start looking for a tent meeting, she wanted it louder. Ok, right on. Then she asked if people were going to sing over her and pray. As I prayed in my spirit, I asked Susan about what she was experiencing. She said she’s trying to listen to God and obey what he says. I’ve learned not to deny the Holy Spirit an opportunity to move – but Lexie and I needed to leave for a final Holiday Chorale rehearsal, so I called our neighbor and prayer partner Melanie Gunsolus. She was willing to come over right away and pray.

Was there a great accomplishment? Perhaps there was, although I didn’t notice any visible healing. Maybe the God of mystery just wanted to engage some of his children in a call and response – an act of obedience or just some interaction. While we continue to pray, I’m reminded that to God, the process is more important than the result. We are pilgrims on a journey.

Thoughts of Heaven

I am hoping Susan's episodes of extreme fatigue and confusion are the result of Thursday's chemotherapy and will be temporary. The fact that a few hours of rest usually restores her until the next time is reassuring.

Even though we've had nearly two and a half years to get used to Susan being a brain tumor survivor, sometimes the absurdity of her illness rears up and I feel a strange sense of detachment, like I'm encountering her situation for the first time. It happened tonight in the bathroom when I guided Susan to the sink to wash her hands and she asked, "What do I do?" Since disorientation and word loss have become normal for her, we handle these lapses without commotion, frustration, or scolding and give a gentle word of instruction. "First you wet your hands. The soap is there on the left." As she responded, we breezed over the situation as usual.

If all I knew about Susan was that she's a 48-year-old woman who is unable to wash her hands on her own, I might conclude she's at about the lowest state a person can function. But she jokes around, sings songs she learned when she was 12, knows her friends, and remembers that she takes a Fosamax pill on Tuesday mornings and needs to wait 30 minutes before eating breakfast. She prays earnestly, can rightly solve a moral problem and will comfort someone who's hurting, but may not remember what happened 10 minutes ago. Brain tumors are weird things.

Perhaps my sense of detachment carried over when I looked at Susan before she went to bed and was gripped with intense love and compassion for her. I told her I love her so much, sometimes it drives me crazy. She giggled an "Ohh" like she would have five years ago. I said I'm so sorry she has to go through such an ordeal and I wish I could take it away from her. I assured her at least I want to do everything I can to help her and never want her to feel neglected or alone. She consoled me that none of it is my fault; and she knows I'm doing everything I can to help. As we shared a pillow in the dark room, my thoughts turned dark also – and admittedly selfish. I said I don't want her to die. Without hesitation, Susan said she is not going to die but will go to Heaven someday just like I will, and it will be better than anything we can imagine in this life. Her confidence in God means her faith has become a reflex that leaves no room for despair. I love that.

As we prayed together, I thanked the Lord that he gave us each other and that Jesus has conquered sin, death, and hell for us so we don't have to worry about them. I thanked him for providing a home for us with him, forever, that will far exceed our grandest experiences on earth and will make our hardest difficulties here seem meaningless. I told God Susan's healing is up to him, but asked him to give us Heaven's perspective on earth so we might draw others to him and avoid foolishness and disobedience. We were united in prayer.

Tumor unchanged

We were grateful to learn Susan's tumor was unchanged over the past six weeks as we viewed her latest MRI yesterday with Dr Nghiemphu. As I've said before, "unchanged" is great news with a progressive disease like GBM. We suspected she'd have good results since her symptoms have been stable for the past six weeks – and were glad to have that outlook confirmed. Some of her blood counts dipped on week four; and her liver function declined on week five, but she showed robust improvement on yesterday's labs and is cleared for her second dose of CCNU tonight. Susan's fatigue, weakness, and short-term memory lapses persist, which seems to be her operating level for now.

While we ask God daily for healing, strength, and restoration; and she receives prayer weekly with friends at home and at church, we are content in trusting the Lord to heal Susan in his time as he chooses. Meanwhile, God certainly continues to sustain us with his grace, peace and mercy while providing the basics we need for life. We find wholeness, purpose, and joy in releasing the difficulties of Susan's illness and our circumstances to God who is "our refuge and strength, an ever-present help in trouble." (Psalm 46:1) We are ever thankful the One who made us also loves us. He guides and provides on our behalf out of the goodness of his nature and the abundance of his resources. God deserves our trust.

Holding steady

We had a busy afternoon on Wednesday with Susan getting a blood test, a flu shot, and a chiropractic adjustment. Along with her six-week CCNU chemotherapy schedule, she needs blood tests on weeks four and five to make sure her counts are not declining. Her infectious disease physician at UCLA recommended the traditional flu shot now and the H1N1 vaccine at his office later this month when it's available. With her weakened immune system, we decided to do what we can to avoid the flu and will get the vaccines.

Over the past few weeks Susan has not improved much, but thankfully has not worsened. Her greater need for help compared to several months ago required us to bring back a professional caregiver from Sheridan Care part-time. Cynthia worked with Susan briefly last December and returned to our home last week to help with morning activities Mon/Wed/Fri. Susan's situation is so much about transitions, so when increased lifting raised the threat of back problems for some of our volunteer caregivers, it was clear we were getting to the limits of their capacity. With that decision came the acknowledgement of a decline – but that's how it is. Managing a progressive disease like glioblastoma can trouble your emotions. One decline can so easily lead to another, so just one setback can create a sense of dread. But we've found it's much better to live in the realm of the now and the known and avoid the foggy extremes of the what-may-be. Susan is doing okay and maintains her sweet nature and positive outlook. God gives us grace, strength and peace for today, so we'll leave it at that.

During one recent span when Susan was extremely tired and didn't feel well, she slept over four hours on a Sunday afternoon and needed a two hour nap the next morning when I was home with her. After lunch, I put her to bed again and prayed with her before she went to sleep. She said, "I wish I could take the time to tell you why I love you, but I'm too tired…I just love you because you're you and God made you to be very special." And I love my Susan.

Quiet days

These are quiet days at home as the kids are back in the fall routine of school and church activities. Susan has our awesome team of caregiver friends helping her and has been needing lots of rest. It’s always hard to tell whether her tiredness results from tumor burden or chemo; but fatigue sets in now sooner than before, comes on quickly, and requires a couple hours’ sleep to clear. Aside from weakness and needing rest, her condition is stable. With a progressive disease like GBM, we’re often as grateful for stability as we are for improvement. Her fighting spirit persists – she tells me often she’s going to get better and will keep trying. That’s a medicine as vital as any other and is itself a gift from God.

Our kids are heroes! I reflected lately on the way life has changed for Lexie, Austin & Adam since the summer of 2007 when their mom was suddenly hospitalized and death was near. I’m immensely proud of how they’ve held up, trusted God, trusted me, and supported their mom. Each of them has matured courageously.

I remember when their first reaction in being asked to help with household chores was to complain. The very idea insults the teenage mind. But as crisis erupted, they stepped up. Adam sets the table for dinner, feeds the dog and handles backyard turd patrol. Austin clears the table, empties trashes and moves the barrels for trash day. Lexie takes care of the laundry along with her school and work schedule. Both boys help with dishes and yard work. Managing our home together now is a regular part of life – not fun, but what we need to do. I still need to fire the starting gun or pry the electronics out of their hands – but our kids are terrific helpers. I enjoy watching them walk over to smooch and love on Mom, and play and tease with her. Since this journey began for our family, I’ve been mindful of their need to be kids and not disrupt the activities and relationships that come with this phase of their lives. Perhaps this normalcy has helped us have room for challenges as Mom’s illness ushered in the “new normal” for our family. At any rate, I love Lexie, Austin & Adam and I’m proud to be their dad.

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.

Ready for chemo

The past couple of weeks have been fairly stable for Susan. We saw her infectious disease physician last week and learned she has no infection. This is good news; but we also learned her July lab tests most likely produced false-positive results and led to a couple of unnecessary rounds of antibiotics. It's a minor frustration in the big scheme that showed me how to prevent such results in the future. Since infection ruled out for now, it's likely that Susan's modestly increased burden is due to brain tumor and swelling. She continues to be in good spirits but has been weighed down more often with fatigue, weakness, and slight disorientation. As usual, it gets worse when she's tired, so she's been resting more. Some days are better and find her more energetic and alert – but the down days require lots of rest and limit her to a low activity level.

Susan's limited improvement makes the need for her next round of chemotherapy more clear. She will see her neuro-oncologist and begin treatment with CCNU (Lomustine) within two weeks. The limited research I've done on the drug shows the side effects are relatively mild, so it might be similar to when Susan was on Temodar in 2007. The best thing I've learned about CCNU is that it's easy to spell. Aside from that, it's effective at crossing the blood-brain barrier, and as an alkylating agent, it's most active in the resting phase of a cell (as opposed to the dividing phase). Apparently, it affects the cell's DNA so it can no longer divide – a good thing. Unfortunately, it's also toxic to normal cells like those found in the blood, mouth, bones, hair, and gastro-intestinal tract, so it can lead to low blood counts & infection, mouth sores, bone loss, hair loss, and nausea. Even so, this drug appears to be both effective and well-tolerated by most patients. We hope that's true for Susan.

We're thankful for:

• Each day, a gift from God.
• Each other.
• Our children, who are champions.
• Our family, our friends, and our church, who love and give amazingly and will do anything to help.
• The physicians and staff at UCLA, the best of the best who demonstrate their care with excellence and responsiveness.
• Our loving, compassionate, and powerful God, whose faithfulness protects us in every way. Knowing him infuses us with hope. Heaven is but a breath away – but he gives us its resources right now to handle the hardest earthly challenges. Nothing can separate us from the love of God!

New tumor treatment plan

This week's MRI revealed more about Susan's recent tumor growth and allowed us to sketch out a treatment plan. While brain tumor growth is hardly good news, several positive aspects of our consultation with Dr Nghiemphu brightened our outlook about this phase of the journey. First, the new area of growth spanning the midline near Susan's original tumor site appears to be a less-aggressive type of tumor called Oligodendroglioma. Its appearance on recent scans lacks the intense contrast of a high-grade cancer with lots of blood vessels like Glioblastoma, which is not a surprise since Susan's tissue sample in 2007 contained both types of cells. While it's not benign and usually is classified as Grade II or III, Oligodendroglioma does grow more slowly than GBM and can be treated effectively with chemotherapy. Dr Leia said it's reasonable once GBM has been knocked down by treatment with Avastin that a lower-grade cancer could emerge, since what's effective for one doesn't faze the other. The drug Susan will have next is CCNU, taken orally every six weeks instead of by injection more frequently. So, a less aggressive tumor that's responsive to chemo with no clinic visits for injections? The report could be much worse.

Susan's been dogged recently by a persistent infection, so the doctor wants to allow a month for healing with more antibiotic treatment before starting CCNU since it can lower the blood count and weaken the immune system. Meanwhile, we were encouraged that a return of the fog last week (as I call the recurring load on Susan's brain and body) did not last and was followed by a 6-8 days of alertness and good energy. It's hard when it comes because you never know if an intruding complication means the spell will linger or worsen. She's been burdened again the past few days, making me wonder whether it's from tumor or infection – but we'll find out when she gets some more antibiotics on board. We'll see her infectious disease specialist on Monday and may need to ramp up her treatment.

The Lord continues to provide for us at every turn in meeting our basic needs and reminding us of his care. Psalm 91:1 says, "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty." People give us food, send cards, offer prayer, share their time, and continually express their love and their desire to do more. While we undergo the great storm of Susan's brain tumor journey, God himself has become our shelter and has caused us to rest in his shadow. His peace is a gift to us.

Looks like more tumor

With the results of Susan's Dopa-PET scan on Friday, it appears she's experiencing tumor growth and will need to restart chemotherapy in the near future. Dr Nghiemphu wants to match the PET scan with Susan's last MRI for a better review; but she believes the scan confirms a new area of tumor near the midline and ventricles. She'd like to see the results of next week's scheduled MRI before we decide on a treatment, most likely another type of chemotherapy. In March when we discussed the potential for tumor recurrence, she said there are a number of chemotherapy drugs she believes will be effective for Susan's combination of Grade III/Grade IV tumor cells. Since we've gotten beyond the first and second lines of treatment of Temodar + radiation, then Avastin + CPT-11, it seems we're venturing into an individualized mode where you find something effective and stay on it as long as it works. Thankfully, Susan is a brain tumor survivor who has taken as long as two years to reach this point.

There is relief in understanding what's wrong since Susan has slipped below her fine form of month or two ago and the burden on her system has become more evident. There's hope in anticipating the next level of treatments will do their work to help her and that God may heal her by any means. And there's comfort in knowing that God has us in the palm of his hand, just as he has all along our brain tumor journey. I find these words from 1 Peter 1:6-7 especially encouraging – Peter praises God for our living hope, for our inheritance, and for God's protection, and then writes:

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

Our help is not in gold, or medicine, or even in our faith itself. Our help is in the name of the Lord. I can't say it any more plainly – we trust him.

PET scan

The fact that Susan has been more mentally burdened this week makes me glad we were able to get in for her Dopa-PET scan at UCLA today. It's a type of CT scanner that uses a radioactive chemical called Dopa injected in the bloodstream to highlight images of the brain. They keep the syringe encased in a heavy tungsten enclosure the size of a thermos and connect it to an IV.

Susan was so full of the stuff she could change our car radio stations by waving her hand. It prompted comments from me like, "Honey, I know you're not a Nazi, but I need to hold your arm that way so we can listen to KRLA on the way home." It's hard to explain, but I think our microwave is jealous. With Susan's new glow, I'm pretty sure we'll be able to keep the nightlights off for a while. We'll get the results on Monday and we trust God as ever.

Holding Up

Following a lingering headache, another episode of nausea and vomiting on Saturday and weekend phone calls with a neuro-oncology fellow at UCLA, Susan was put back on Decadron, the anti-brain-swelling steroid. Because of its side effects, it's one of those drugs that as badly as you need it, then you need to get off of it. After finishing a careful, three-month taper in June, resuming it was a reluctant but necessary step – and she's doing better this week. We're already stepping the dose down from 8mg to 6mg and may be at 4 by the end of next week unless she worsens. The fact that she hasn't had a big cognitive slump by now is a good sign and gives us hope of a favorable PET scan result in the coming weeks.

I've written before about our nighttime talks when we have beautiful, lucid conversations before going to sleep. I don't know if it's the dark quiet of our bedroom, the lack of distractions, or the peace of our prayer time, but when we talk sometimes the effects of Susan's illness seem to fade away. We could just as easily be having a conversation five years ago.

Last week's MRI was the first troubling one we've had in over a year, so one night in bed last week I asked Susan how she was doing and whether she was feeling a bit discouraged. She admitted she was, and a bit scared, too. I asked her about that. She said she's not afraid of dying, but she's afraid of losing all the progress she's made. She said she's going to do her best and keep trying. That's the answer of a fighter who's a long way from giving up. I told Susan how thankful I am for how God made her – a person with a positive disposition and an ingrained sense of commitment. Her hard-work ethic means she does what needs to be done in spite of how she feels. Gotta love that woman.

We also talked about Heaven and how amazing it will be to see, hear, and touch a world our souls have longed for, and we imagined what it will be like to be with the Lord in person at last. I told Susan I'd been thinking about how the nature of our faith and hope in God will change when we go to Heaven. What happens when we don't need to believe any more because we're looking right at Him? What happens to such a hope when it's fulfilled? We wondered about that. Even the word "fulfilled" seems lacking – I have a sense that what we'll get in place of our hope will be much, much more. Someday….

Concerns

We went to UCLA on Wednesday for Susan's scheduled MRI and oncology update. The timing was good, because on Sunday morning she vomited at the breakfast table and developed a persistent headache – two signs that tell us something could be wrong. While there's no obvious tumor growth in her left frontal lobe where the tumor was removed, the MRI showed an area of swelling nearby. The blood clot from January's hemorrhage is slightly smaller than six weeks ago, but what's there may be obscuring the view.

Dr Nghiemphu is also concerned about an area to the right of Susan's tumor cavity near the midline and ventricles that may be new tumor growth. The area didn't pick up the contrast solution that would highlight a fast-growing tumor; but she's concerned about a lower-grade cancer since Susan's biopsy had both types of cells. She ordered a dopa-PET scan for the first available slot, but that's not until mid-August. Since Susan's headache eased by mid-week and she's generally doing well otherwise, we're not too alarmed. We hope she continues to do well so she can avoid going back on the steroids that would be required if she declines. As always, we're ever in the Lord's hands and trusting him.

Here's an encouraging passage from Psalm 28:

⁶ Praise be to the LORD,
for he has heard my cry for mercy.

⁷ The LORD is my strength and my shield;
my heart trusts in him, and I am helped.

Waiting

Susan graduated this week from having a full-time, paid caregiver to having the help of family and friends, a step made possible by her growing strength plus the kindness of others. We're grateful to Ana for her seven months of wonderful care for Susan and will need to overcome her spoiling us with daily laundry service and other housekeeping helps. But what's astonishing is that we can turn to more than a dozen dear ladies who each devote 3½ hours to provide Susan with care and companionship each weekday. We are rich in acts of service on our behalf and are in awe of the love expressed through our church.

While a friend and I were talking this week about the two years since Susan's brain tumor diagnosis, I mentioned her ten or more stable MRIs since 2008 and realized a new perspective – we're waiting for something to happen. We're waiting for the tumor to grow again, because that's what high-grade, malignant tumors do. We're waiting for God to heal her miraculously, because that's what a loving, almighty God does. We're waiting for a medical breakthrough that will move glioblastoma from treatment to a cure, because that's what scientists are dedicated to discover. These are our three options, so we're waiting. Sometimes it's hard to wait.

Sometimes it's harder to wait than others, like when the momentum of a devastating disease like brain cancer can't be stopped in spite of all efforts. As the crisis intensifies, the patient worsens – and then it's over. The battle is finished. I'm thinking of brain tumor buddies we loved: Larry Litherland, Joanne DeBoer, Jeff Nord, and Joanne Bono. Sometimes, momentum closes in on the unbelievable, which becomes the inevitable. That kind of waiting brings anguish. It can crush you because you just can't get a break; nothing works. We've had a break, thank God, so we're still waiting.

None of us likes waiting for anything anyway. Who hasn't yelled "Hurry!" at the microwave? Jell-O takes overnight in the refrigerator to set – but we speed it up by adding ice cubes. Then there's minute rice and minute oatmeal, and we haven't even left the kitchen. Don't get me started about the DMV.

Waiting for anything you're focused on can be torturous, like a child waiting for Christmas, or a trip to Disneyland. It can be especially hard to wait for things you can neither control nor avoid, like the 95-year-old who's outlived her husband and friends and restlessly faces her natural end of life. Such an existence can be made worse when it could have been avoided, like the prisoner whose agony over his long sentence is magnified by the frustration of causing it. But it's especially hard to wait when something as important as the life of a loved one hangs in the balance. It's natural to wonder what will happen, and when. Would it be any easier if we knew what the outcome would be? I don't think so. We'd still have to wait. So, we're waiting.

Then there's God, always attending, always caring, always providing his creative power on our behalf, always making despair optional for us even if our circumstances are not. Those who know they belong to the one who does his best work in graveyards have a wellspring of strength that somehow finds its flow in hopeless situations. Waiting need not be misery when it can be infused with faith, discovery, and the expectation of God's goodness to be revealed. We have his promises to guide us, like a favorite of mine from Isaiah 40:

28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

With help like that, I don't mind waiting.

Two years in brain tumor world

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

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

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

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

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

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

What brain tumor?

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

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

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

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

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

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

New blog gadget: Followers

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

Moving right along

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

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

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

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

Another good MRI

Susan’s MRI at UCLA yesterday showed continued improvement with her blood clot getting smaller and tumor remaining unchanged and stable. As the clot from January’s hemorrhage resorbs and clears on its own, it reveals a clearer look at the tumor. Since it blocked much of the detail on April’s scan, Dr Nghiemphu couldn’t be certain about tumor stability even though things looked good in general. Yesterday’s scan allowed Dr Cloughesy a clearer view and left everyone with a sense of gratitude about Susan’s progress. She’s doing well on her Decadron taper and was cleared to stretch her dose another notch to one-half milligram every two days instead of every other day. She’ll be off it completely before long. We'll go back for another scan in six weeks. Meanwhile, Susan continues to strengthen and improve both physically and cognitively. She’s able to stand and climb steps more easily, has better mental clarity, and seems more her normal self all the time. We had a great day together yesterday with her UCLA appointments and enjoyed a lunch date at BJ’s in Westwood afterwards. We found ourselves walking past Diddy Riese after lunch, found ourselves standing in line, found ourselves ordering hand-made ice cream sandwiches, then found ourselves sitting along the sidewalk and eating them. We are mind-numbed robots with no actual control over ourselves. But at $1.50 for two freshly baked cookies squished around rich ice cream, self-control is out of the question.

The boys and I got to be lumberjacks again on Memorial Day weekend as the four of us and Daisy the dog got back to the family cabin in Angelus Oaks. We were rejuvenated by the sunny, mild weather, fragrant forest and tree-felling man work. The County of San Bernardino increased their fire safety requirements, so we had to limb-up and thin areas of the property that have been untouched during my lifetime. It’s a work in progress that we’ll continue over the summer; but we made a good-faith effort and a highly visible difference with the help of our neighbor, Jim Finn. You gotta love the power tools. Susan is yet unable to prepare meals and handle the indoor activities she used to do, but her greater independence made it possible for us to work outside without having to be with her 100% of the time. Some brief visits with friends and beautiful weather made it another memorable weekend. We treasure our family hideaway.

More grace

With no dramatic changes physically, Susan continues to improve mentally these days. She’s now more fully engaged in what’s happening around her, has better alertness and memory, and is more able to track the family’s activities from day to day without help. This kind of progress is hard to measure day to day but is obvious compared to weeks or months ago. Those who don’t see her daily tend to notice her improvements right away. Ever aware of God’s gracious hands upon us, I suspect the clot from January’s hemorrhage has continued to clear. We’ll know more about the clot and tumor when we return to UCLA next week for a scheduled MRI and oncology visit.

One highlight this week was our return together to Mayfair HS for open house on Wednesday evening. It’s been two years since Susan’s been able to be on campus for these kinds of events. We used her wheelchair and were able to zip around campus and see most of the boys’ teachers after catching one of Adam’s final choir concerts during a pizza fundraiser. In spite of a few lapses here and there, we received encouraging reports on Austin and Adam. Having feedback about their smarts, character, and positive influence on their peers makes us deeply joyful and increases our confidence about their transition to adulthood. They’re good kids – we’re thankful. I always remember Dr Dobson’s comment that adolescence for a family is like going through river rapids. You need to hang on and keep everyone in the boat. There are calmer waters ahead.

As I was summarizing our situation with some friends this week, I kept feeling grateful to God for the gift of hope during hard times. I believe it’s the great difference maker for us. It’s just hard for lousy circumstances to crush you when you know you belong to God. As I shared with one friend, I'm so impressed by the goodness of God and how He uses the challenges and tragedies of this broken world to help us grow in faith, character, and appreciation for the basics of life. We learn these lessons best by walking the path of suffering in faith and trusting the one who guides us with a reliable hand. It still sounds strange to say, but there is preciousness in suffering. The process is so much more important than the outcome. I will never regret what we're going through.

Quiet improvement

Susan continues to improve during her respite from chemotherapy. She’s more alert, has better memory and is more her normal self all the time. She sometimes confuses words and the days of the week and she’s still physically weak; but we’re grateful for the positive direction she’s moving. Although Susan doesn’t seem different to me from day to day since I’m with her all the time, people who haven’t seen her in a while often mention how much better she’s doing. Her caregiver, Ana, helps Susan on weekdays with meals, bathing, and therapy exercises and is an invaluable help for us with laundry and daily housework. Today brought us back to UCLA for a follow-up appointment with the infectious disease doctor who’s been treating Susan for her various infections including fungal meningitis. Dr Uslan echoed how well she’s doing and obviously was pleased with her energy and responsiveness. He said seeing her recovering so well made his day. We bumped the next check-up from three months to four.

A generous client of mine who is an Angels Baseball season ticket holder shared her 3 seats with us again this year for last Friday night vs the Kansas City Royals. I’ve taken Austin and Adam for the past several years, but since Austin had plans already, I thought I’d bring Susan along. The seats are in the middle of a row above field level along the 3rd base line not far from the Angel dugout. I thought she might have trouble walking up and down steps and past people in our row, so an usher let us sit above our section in a handicapped seating area. Those seats were unsold that night, so we had good viewing and plenty of room for Adam and I in stadium seats next to Susan in her wheelchair. As the game was under way and we were eating our sandwiches, I wondered how much Susan was able to follow. Just then, she turned to me and said, “It’s a full count.” The count on the scoreboard showed 3-2, a detail I doubt she could see. I knew she was following the action and we were in for a fun evening. A while later, the trumpets blared and the crowd yelled, “Charge!” I shouted “Pay cash!” – Susan cracked up and Adam rolled his eyes. It must be terribly exciting to live with me. When the final inning closed, we walked along the concourse behind center field for the Angels’ “Big Bang Friday” fireworks show. We had up-close viewing of the display along with a Rolling Stones soundtrack to wrap up a memorable evening.

God has been completely and consistently faithful to us during hard times. We are amazed. We count our blessings and give thanks. Although I work as many hours as I can, our family medical expenses have piled up since the first of the year. At times our bills have been overwhelming – but God has met our need with each time with gifts from loved ones. With compassion, my employer accommodates my erratic need for time off, sometimes for days in a row. Susan’s parents provide our caregiver for us and bring a meal each Thursday. For months, someone from church frequently has brought us extra food almost weekly. Another family from church generously provides their housecleaners for us each week. Several ladies come by each week to lay hands on Susan and pray – not to mention the countless people who pray faithfully all the time. Sunday at church someone tucked an envelope into my hand containing a large check. As we approach two years of the hardest season we ever could have imagined, we have encountered some of the best of life and God’s goodness. Thank you, Lord!

A good-news oncology visit

We visited UCLA last week for Susan’s scheduled MRI and oncology visit with Dr Nghiemphu. The results were good, with continued tumor stability and evidence that the blood clot from January’s hemorrhage is breaking up. Susan has rebounded well from her most recent bout with infection, so the doctor is pleased with her overall improvement and has extended Susan’s scheduled MRIs to six-week intervals instead of monthly. Meanwhile, Susan will continue her physical therapy at home with her caregiver. I’ve noticed Susan’s alertness has improved a great deal since her infection cleared, although she still needs full-time assistance for daily living due to weakness and cognitive limits. We’re certainly grateful for the good scans this week and her continued respite from chemo treatments. We don’t know how long this quiet phase will last or how much function she’ll regain; but Susan is as committed as ever to getting well. As I lay her down to rest the other day, she apologized about needing so much help, but then she said she didn’t choose to be this way. I assured her it’s all okay. We’re partners, we’re in it together, and we’ll get through it together.

After Susan’s appointments were done on Wednesday, we walked to a little place for lunch called Café Synapse that serves delicious, fresh food and always is populated with medical students. As we approached the entrance across the street from the hospital, we noticed 3-4 police officers standing near each of several building entrances. I said we were there to eat at the café and asked if we could enter, and noticed some riot gear stashed inside the doors as we were allowed inside. I thought there might be a VIP visiting the building, but learned the police were there because of an animal rights protest happening a block down Westwood Blvd. I’ve read about previous protests against medical research on animals at UCLA and I knew about some violent attacks on researchers’ homes. While we ate, I noticed several small groups of protesters carrying signs as they marched on the street below, each tailed by a motorcycle officer. While searching a hallway for a restroom after lunch, we came into the midst of the protesters’ passion – a group of the university’s research labs, including one headed by one of the very brain surgeons who has treated Susan. Someone taped a picture of a lab rat on a door in what didn’t seem to be an act of protest but a symbol of the work they do there.

When it comes to the sanctity of life for animals, we have a spectrum with the extremes. On one end, there are those who elevate animals to equal or even surpass humans, like the protester with the sign reading “Stop Animal Terror.” On the other end, there are those who diminish animals to be unimportant or even disposable, like the kid with the B-B gun picking off sparrows. Somewhere in between are those who recognize animals’ importance and the sober cost of using them to rid humans of disease, like the other protester with the sign reading “Animal Research Cured My Mom’s Cancer.” Wednesday’s protest at UCLA actually was organized by a research professor who grew tired of being attacked. By the time Sue and I strolled down the block to the protest area, the pro-research protesters had packed it up, leaving the anti-research protesters making noise near the satellite trucks. Susan’s comment was observant – “There sure aren’t very many of them for all the attention they’re getting.”

Update on Janet Buccowich

Here is an update from my sister on our mother, who was discharged from the hospital on Sunday after being treated for pneumonia. We expect Mom will get past her recent complications brought on by drugs that were intended to treat mild symptoms associated with her brain tumor. As for the meningioma, the treatment plan for now is conservative. She is comfortable with having occasional MRI scans to watch its slow-going progress since a surgery could introduce more ill effects than the tumor itself. Mom expressed her gratitude for lots of people near and far who have prayed and expressed their care.

Just wanted you to know that mom is doing fine at home. Rest continues to be her biggest ally. Most things are back to normal, but she is still unable to get herself out of chairs unless they are quite high, and her feet swell if she doesn't keep them elevated enough. These are still effects from the steroid. She is on a lesser steroid until she can see the endocrinologist on Tuesday, and hopefully begin a taper off. Once she is off of that it should be smooth sailing on the way to complete recovery!

The high point of her week this week was the shower on Tuesday. If you've ever been in the hospital or even out hiking/camping you know how good that feels! The other high point was being able to dress in clothes and go out yesterday (even if it was only to the doctor and it pretty much wiped her out for most of the day). She is getting stronger daily, able to walk a little farther and stand a little longer than the day before. Of course, by night time she is pretty tired. Her breathing is also much better. Seems that she only gets out of breath now with exertion and it's not that breathless kind. So she's coming along quite well!

Hope you all are doing well! Thanks again for your love and prayers! God is good! More later! Love, Becky

Improvement, UCLA Brain Tumor Conference

Susan’s infection finally resolved with her 10-day course of antibiotics, leaving her with improved alertness, memory, and strength over the past week. On Palm Sunday, we visited my mom at UCLA toward the end of her earlier hospitalization, so Susan actually had her first trip to the medical center as a visitor. Woo-hoo! That’s progress. Later, we enjoyed a dinner date at Jerry’s Deli in Westwood, where we always seem to get the same table with her wheelchair. As we enjoy her lift and lighter mood, the contrast is striking. It’s amazing how disruptive these ailments can be, putting a clamp on so much of her ability to function. We trust and pray now that the blood clot in her brain will dissolve fully over the coming months. We continue to ask God for healing from cancer and all of its effects and for her strength and restoration. We trust Him for the outcome according to His will.

Last Friday and Saturday, my mom, sister and I attended the 9th annual UCLA Brain Tumor Conference on the campus in Westwood, hosted once again by Neuro-oncologist Timothy Cloughesy. Susan joined us on Saturday. Like last year, I realized again that the UCLA neuroscience team of oncologists, surgeons, radiologists, pathologists, social workers, nurse practitioners, and staff are really smart, really hardworking, really caring, and really committed to helping rid people of brain tumors. Their research-driven program incorporates the global body of knowledge about brain tumors, pursues avenues of the science that show promise, and distills it all into practice for treating patients.

Having navigated brain tumor land for over a year and a half, I was more at ease with the volume and complexity of information and better able to absorb more of its subtle aspects. I heard again that any tumor is really a problem with the immune system being unable to stamp out rogue cells that multiply too quickly. I concluded again that brain tumor patients have one thing in common – a brain tumor. Beyond that, factors like tumor type, grade, and location, plus patient age, health, treatment options will make one person’s outcome different than another’s. I understood for the first time that even brain tumors of the same type are not the same (they’re heterogeneous). For example, one glioblastoma multiforme tumor is not like another because of unique ways one person might express proteins on the microscopic level. With these individual differences, the same treatment will not work in the same way for two people with the same type of tumor.

I also had clinical trials demystified for me a bit. I had thought (and hoped for Susan) that a clinical trial is desirable over other treatments because that’s where all the cutting edge stuff is happening. It does make sense – a breakthrough treatment needs to go through a clinical trial before it can be available to everyone, so clinical trials are a realm to search for better treatments. But I learned that CTs are also a testing ground where ineffective remedies can be ruled out, so you must beware of the risks involved. Then I realized CTs are kind of like minor league baseball. You might go to a game hoping to see the next Manny or A-Rod, but you might waste your time watching deadbeats who don’t belong in the majors. At least with baseball, the risk is limited to a letdown plus the cash you spent. While I would not rule out a CT, the benefits are clear in employing a treatment that’s been accepted as a standard of care – having passed clinical trials, more people have used it by now and the outcomes and risks are more predictable.

While Susan was praying the other night before we went to sleep, she got stuck. She said, “and Lord, please help me to…” (pause) “Please help me to…” She couldn’t get the words out – but I hoped she would because I wanted to know what she wanted God to do for her. Susan can’t communicate like she used to, so our conversation usually is limited to basic stuff and playfulness. That’s just how it is. But I wanted a glimpse of her heart’s desire, and hoped at least I could overhear it while she expressed it to her Father in Heaven. “What do you want God to do for you?” I asked. “I can’t think of how to say it.” After another pause, she said, “What am I thinking of?” She really was stuck, so I said, “God knows what you want.” She continued, “Lord, you know what I want. You know what I want. Please help give me what I want…to your glory.” So, I was content with another element of mystery on our journey. And that was a great prayer.

Janet Buccowich hospitalized again

My mother Janet was hospitalized at UCLA Medical Center on Tuesday and is being treated for pneumonia. She’s been struggling with medications begun in February to treat effects of her benign brain tumor (meningioma). The steroid Decadron has been the biggest culprit in terms of fatigue, muscle loss and weight gain. She had some pulmonary edema or fluid on the lungs several weeks ago when she was hospitalized for testing, but it resolved on its own over several days and required no treatment. Meanwhile, some breathing difficulty persisted recently as Mom began a progressive taper schedule to get off of the steroid. Mom woke up with a fever and increased weakness on Tuesday morning, the day my sister Becky and I were to take her to a follow-up appointment with a UCLA endocrinologist to address her steroid-related side effects. Her fever spiked and she continued to weaken as we met with the doctor, so she was admitted to ER where the pneumonia was discovered. She’s been moved to the UCLA Santa Monica Hospital for continued treatment until she’s well enough to return home. We thank God for the timing of her scheduled doctor visit at UCLA that allowed her to get help when she needed it. She was fading fast, so the event became a bit traumatic for everyone. Since it looks like the pneumonia resulted from her weakened condition on steroids, she’s expected to be free from chronic effects once she recovers and eliminates more meds.

Regarding her brain tumor, UCLA neurosurgeon Dr Bob Shafa has recommended a conservative approach to treatment. Meningioma tumors grow slowly, about 1mm each year. Mom’s tumor was only 2mm when it was discovered 18 years ago, is now under 3cm, and has given her only slight symptoms. Brain swelling and seizures have not been a problem so far. As a result, her treatment plan calls for observation, minimal drugs, and surgical resection only as a last resort. She’ll have an MRI every 6-12 months to monitor the slow tumor progression. We hope she can return home from the hospital soon.

Since Susan has been such a regular patient at UCLA, Mom’s hospitalization is a bit surreal and can lead to some confused encounters. I’m used to focusing my caregiver energy on my wife in that environment, so it’s weird for me to see my mom there instead. I'm a familiar face to some of the staff, so I had some “How’s it going?” and “You again?” greetings this week in the ER. Danny the x-ray tech was faked out when he wheeled his machine into the “Buccowich” room and expected to see Susan for chest pictures but saw Janet instead. Such is life for the Buccowich brain tumor people. We’re still waiting for the multi-family discount.

Lousy infection!

I’m not sure if it’s a new one or the same one returning after lying low, but Susan’s recurrent infection is back. Her lab results from last week were positive for bacteria in her urinary tract and also showed resistance to Bactrim and Cipromycin, two antibiotics she had recently when symptoms surfaced again. She’s been on a different antibiotic called Augmentin for two days and will have more labs this week to see if the drug is being effective. If it’s not working for her, she’ll need a course of stronger, IV antibiotics. This episode has been a drag for Susan – increasing fatigue, weakness, and confusion, and causing some irritability. She hasn’t had the strength or will to participate in therapy very well the past few days. We continue to pray for healing and we hope her current meds will knock down the infection. She’s burdened enough while the blood clot remains on her brain, so relief from complications like this will be most welcome.

Tumor stable, clot still there

I was apprehensive about Susan’s MRI today. She’s been weighed down with confusion, weakness, fatigue, and other aspects of a neurological burden that had me prepared to discover her tumor had grown since last month’s scan. We are relieved and thankful her scan looked good today. Brain swelling is down in spite of lower doses of the steroid Decadron, the brain tumor has not grown, and the blood clot from January’s hemorrhage is still there. It’s the clot that’s chiefly causing her symptoms. It’s big, and it’s putting pressure on the top of her left frontal lobe. While much of the bleed is contained in the cavity where tumor was removed, a portion of it rests on top of brain tissue in an area that affects memory, speech, balance, and the initiation of tasks and movement. On the brighter side, the whole deal can make for some funny conversation. Tonight at dinner I noticed Susan’s empty bowl and said, “You finished all your fruit.” “Yep,” she said. “I ralphed ‘em down.” I’ve just always heard that word used when food moves the other way. Yesterday, Susan was still having a late nap when I got home from work. She actually was awake when I walked into our darkened room. I said, “What’s going on in here?” to brighten up the place. Who knows how long she had been quietly waiting. “I’m just lost in space,” she stated pleasantly. Some of her comments truly come from beyond the sun – and make me laugh.

Even though the bleed is a culprit that will be with her for a while since they normally take 3-6 months to absorb, we feel a weight lifted in knowing her tumor has not advanced. Statistically, it will be a matter of time for a grade IV GBM to grow again. That’s the reality. It’s just not yet – and that’s a relief. We are aware of God’s great and gracious hands leading, guiding and providing at every point of need we have. We have many right now. My prayers lately have moved from “God, give us strength” to “God, be our Strength.” Not just “God, give Susan healing” but “Be her Healer.” It's not so much wanting what He can do for us as it is wanting Him. I sense we’re more aware of Him in ordinary moments and wanting more of His presence. It’s a satisfying type of growth that prepares us for an eternity with Him. Yet knowing sin is “crouching at the door” and inevitably I will break fellowship with Him is also a reality. Perhaps I’ll remember to say not “Lord, give me grace” but “Lord, be my grace.”

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.