Hopefully headed home

Yesterday brought good progress with Ativan tapered from 12  to 2 mg/day, the continuous EEG removed, and Susan feeling more alert. Late in the day we learned they’re considering discharge today, a most welcome report.

The attending neurologist feels comfortable her clinical seizures are under control even if she continues to have the small, unobservable ones. He also said not to be alarmed if she has one or two visible events during the day as long as they don’t lapse into a continual cycle. That’s good to know for the transition at home since life with seizures is a new experience for us.

Susan’s strength and will to improve amaze me. She always tries her hardest to get better; and I can see her even now pushing to be independent. Knowing her, I am not surprised by her initiative and would be concerned if she didn’t have it.

Then there’s her sense of humor, still intact. Yesterday, the attending physician gave her the routine brain quiz to check her status – “What is your name? When were you born? What is the date today? How many fingers am I holding up?” and so on. With seizures, drugs, and her usual aphasia, her answers this week ranged from disoriented to disconnected.

So I didn’t expect much when the doctor asked, “Where are you?” She rarely says “At the hospital” on the first try. Susan paused, smiled, and said, “I’m right here across from you!” Good one, honey. She laid that one on em' during a prior hospital stay, so she's still got it.

I won’t believe it until we have the discharge orders; but hopefully we’ll be out of here today.

Adrift in dreamland

Although I did not observe Susan having any seizures yesterday, the EEG recorded eight in a 10-hour period. The visible ones are potentially more dangerous to her body, so it’s good that the activity has been sub-clinical. She’s on Ativan round the clock to break the seizure cycles. It makes her sleep a lot – over four hours so far today.

I couldn’t imagine staying asleep while a nurse attached a cuff and took my blood pressure, but Susan did. She also slept through having her finger pricked for a glucose test, having the room cleaned, and having a neurologist view her EEG screen while conferring with me from three feet away. That’s enough to make a Buccowich proud – we who descend from a long line of semi-professional sleepers. 

All of this long winter napping has made for a quieter day since she hasn’t been roused enough for therapy. The Ativan effect is evidently quite contagious as sleep became my only activity for at least an hour. So vigorous was my sympathetic exercise that I need a little rest afterwards.

Susan has awakened at last and is in good spirits. She hasn't had any seizures that I noticed again today, so we'll see what the EEG reveals. There’s still no word on discharge. Thoughts of a jailbreak consume me. We're thankful for a world class health care facility with flat-screen TVs and for ESPN with college bowl games.

Seizures linger and so do we

This will be Susan’s fifth night in the hospital in what’s become an extended stay. The UCLA neurological team continues to monitor her seizure activity while trying to find the mix of meds that will be effective at home. Meanwhile, her seizures linger.

Following Sunday’s 20-minute study, she began a continuous EEG yesterday afternoon that recorded at least 12 seizures in about 18 hours, mostly during the night. I observed two before leaving at 10pm. The staff witnessed just two or three more, so evidently there’s a lot of seizure activity that’s sub-clinical, noticeable only in brainwaves. As a result, they’ve increased some anti-seizure drug doses and added another 24 hours to the EEG study. Since Susan made the EEG bonus round, the attending neurologist gave me one of his "No Seizures" buttons. Don't be jealous. Our first chance for discharge may be Friday – but I wouldn’t be surprised to be here another weekend.

We enjoyed visits on Christmas from family and friends bearing gifts. The poinsettia that caregiver Jackie brought adorns Susan’s window overlooking Westwood Blvd. Being together with loved ones lifted our spirits. This was the first time in our lives we celebrated our Savior’s birth apart from worship in church and festivities at home. In spite of some sadness at being so disconnected, being sequestered was good in a way. We were removed from the American intensity of Christmas and left with quiet reflection on Jesus birth. Even if we lose the holiday trimmings, God’s marvelous gift in Christ can never be diminished.

Today was Susan’s scheduled two-month MRI and neuro-oncology visit. Since I made sure her MRI on Saturday also followed the oncology protocol, she didn’t need the scan today. I think that nixed about $6k in medical billing. At 10:30 this morning I simply walked next door and chatted with Dr Nghiemphu about all the weekend test results while Susan slept.

She confirmed that Susan’s tumor is mostly stable. While this is good news, she’s concerned that seizure activity could indicate tumor growth that’s not yet visible by MRI. We know that GBM tends to advance with microscopic tendrils, so I share her concern. We went back to a four-week interval for Susan’s next MRI and will take it from there. This is no different than the past 5 ½ years with incurable, progressive brain cancer. She's made it this far. We hope for the best, pray always, trust God, and are ready for anything.

The rest of the day has been busy with visits from the usual staff plus occupational, physical, and speech therapists. At different times. Add the nutritional counselor, BP readings and blood glucose tests, and Susan’s pretty popular. She also graduated from bed and spent the afternoon in the recliner.

I’ve seen no seizures so far in over 8 hours; but she’s been on increased Vimpat and a double dose of Ativan this afternoon, which may be enough to ward off an LA earthquake. It certainly warded off wakefulness and ushered in a deep, quiet nap. I’ll spend my third night here tonight. We’re thankful for God's peace, everyone's prayers, great medical care, and loving family and friends.

Christmas with the Bruins

It’s Christmas Eve, so we’re on track for “Christmas with the Bruins.” Our friend Sheri picked up on that theme too. She's a UCLA fan. I told her this episode is sort of a 70’s style TV special but without the musical numbers, costumes, lavish sets, or celebrities. And it's at a hospital. Our friend Alecia said Jesus wears scrubs tonight.

This is our third hospital holiday, following 2007’s Independence Day brain surgery and Labor Day meningitis. I guess this Christmas seizure swarm means we’re working through the calendar.

We’re sad to be away from our kids this Christmas except for bedside visits after a 25-mile drive to Westwood. We usually have church together and a Romberg family celebration on Christmas Eve, followed by our morning gift exchange and a Buccowich family celebration on Christmas Day. We love our family time and we’re sad to miss it this year. We’re sad to have our traditions interrupted. We’re sad for all that’s happened to Susan and for the burden it is on our lives.

Whatever heartache we may feel in being disconnected from our family and in struggling with brain cancer, we’re thankful to God for the gift of Jesus. I understand them so little; but I’m amazed at the great things God accomplished to bring about the life and mission of Christ.

There’s a lyric in “Carol of the Moon and Stars,” from Bob Bennett’s brilliant “Christmastide” album. He writes, “Look up, see the chaos and precision of the Living God.” Wow. That’s a word for me. We’ve known so much chaos – illness and upheaval, loss and brokenness. But we also sense God’s precision – his purposes at work in our lives that are magnificent in scope and perfectly executed, just on time. We don’t know how it all works. We trust God who does.

We love his peace that helps us as we move under the chaos into the stream of his precision. It’s a big pile of hurt with a place of consolation underneath. It’s a jagged crust of despair hiding hope inside a warm, gooey center. It’s so like God to compel us to find him in his stillness while the world rages all around. It's just like he did when the King of Kings came to Earth in the unexpected perfection of a baby in the filth of a stable. Merry Christmas.

It's beginning to look a lot like an unusual Christmas

It’s Christmas Eve. We’ve been at UCLA Med Center since Saturday when Susan was admitted through ER for moderate seizures that increased in frequency, even with higher doses of her anti-seizure drug at home. Since seizures can be common with brain tumor patients, Keppra is prescribed to prevent them. Susan’s taken it daily since 2007 without event until now. In my prior blog post, I explain how this seizure swarm started.

Susan’s battery of tests over the past 48 hours included blood and urine for infection, MRI for tumor, EKG for heart, and EEG for brain activity. The MRI revealed no great changes such as increased tumor, swelling, or fluid.

Last night’s 20-minute EEG recorded two seizures. The first had the noticeable symptoms of Susan straining her head and eyes to the right while unresponsive. As usual, it lasted about a minute with no convulsions or loss of consciousness. The second was visible only on the spectrograph of brain waves. With that, the neurology team thought she might need a continuous EEG under observation in ICU to track the brain-wave-only events.

But today, the combination of Keppra and another drug called Vimpat seem to be working. Susan’s last noticeable seizure was around 6am. The plan now is to forego another EEG and see whether the meds are indeed effective over time. If so, she’ll go home with a new anti-seizure cocktail – and we’ll add seizures to her long list of brain tumor experiences.

Susan is more tired and confused than usual and has been a bit contrary, sometimes wanting to peel off her EKG wires or wanting to get out of bed and go somewhere. Mild rebellion doesn’t come naturally for a gracious soul like Susan. But such disorientation is the stuff of brain tumor world. Thankfully, that fog looks to be lifting. Most of the time, lucid moments and her upbeat attitude prevail.

It appears the medical team’s decision to test Keppra + Vimpat meds means we’ve turned the corner from the long discovery phase toward treatment and discharge, whenever that is. I hope to see her neuro-oncologist before we leave since we were scheduled for a two-month checkup this Wednesday anyway. We’ve already done the MRI. I expect the neuro-oncology visit will inform us with the big picture. 

For now, we wait. Why not? It’s still Advent today, a time of waiting. We thank God for his love and faithfulness in all things, and for his peace at Christmas time.

Seizure swarm

We're in ER at UCLA trying to get a handle on a seizure episode that started last night. I first noticed an odd non-response from Susan when a neighbor greeted us at Costco. At the time I chalked it up to aphasia since getting words out can be hard for her. But she was obviously seizing later when she had her head wrenched way to the right with eyes pushing right and was unresponsive when Adam was talking to her. It lasted 30-60 secs, then passed.

I thought some rest might help but called the doctor at 2am after a few more occurred. I gave her an extra Keppra tablet for seizure control and we upped her dose for the morning. Dr Kong said we would chat again then. Susan's been on anti-seizure meds for 5 1/2 years without any episodes except after initial brain tumor diagnosis.

Last night she had one every 60-90 mins, so it was not restful. We slept late. After more Keppra and breakfast, the seizure intervals shortened to 15-20 mins. The doctor said we should go to ER for other meds to stop the process.

After 8 hours, an MRI, and other tests in ER, we're waiting for Susan to be admitted to the hospital. She's still had about 8 or 9 seizures while on the stronger Ativan. She's able to see and hear as they occur, but can't speak until they're gone. She's moderately disoriented and very tired.

The initial MRI report shows no swelling or fluid changes compared to October but evidently some tumor growth, which is no surprise right now. She'll be admitted upstairs hopefully soon. She's also scheduled for an EEG to study her brain waves.
The doctors want to get the seizures under control and arrive at a firm idea for the cause. For now, both of these elude us. Actually, so does the hospital room.

Some highlights of the day: Susan joking around with Austin right after a seizure ended; Susan joking around with me whenever she could; Susan and I hugging and saying "I love you" a lot; and me saying "I'm a writer" when the admissions clerk asked for my occupation. We thank God for his gift of life and continue to trust him in all things. We thank you for your prayers.

Drug reaction interrupts chemotherapy

Susan has been dogged by a persistent drug reaction that began with a big eruption in August along with an ER visit and now shows up daily in a more mild form. We initially suspended one of the drugs she took in combination with chemo, and have since dropped two more pain management meds to ease her system. Still, each day she gets welts and red blotchy skin on her trunk and extremities. They’re painful and itchy, but are relieved with Benadryl and Zantac.

When she was due to have chemo again several weeks ago; Dr Nghiemphu said we should wait until the rash clears completely before proceeding, if at all. Unfortunately, the reaction persists, so she may have had her last dose of Temodar.

The fact that her initial reaction so closely followed her chemo dose in August made it clear that’s what caused it. That type of reaction is typical of long-term Temodar use when a person no longer tolerates it. But to have a chronic rash each day for this long suggests another cause that for now remains a mystery.

Most brain tumor patients pass away before long-term drug reactions have a chance to occur, so we’re thankful to have such a problem. God has sustained her life and continues to work out his purposes along the way. We’ll have Susan’s next MRI and oncology visit after Christmas. Of course, we hope for continued tumor stability, and will discuss our options to resolve the mysterious rash.

Meanwhile, Susan continues her journey in remarkable fashion with the help of loving friends and family who care for her. She enjoys daily walks, still needs to rest a lot, and thankfully takes initiative to do things for herself as much as she can.

She’s constantly joyful. Joy is her natural bent, her first response, and no doubt a big reason for her survival. She’s incurably positive. Optimism and hope run deep in Susan, keeping her strong and stable. She’s spiritually enthused. She maintains a readiness to encounter God at any time; so spiritual songs and topics easily move her soul. She likes to close her eyes and drink in what’s happening around her, enjoying music or a sermon. And sometimes she’s just sleeping.

She’s also constantly playful, which probably wouldn’t happen without her joy, optimism, and fine-tuned spirit. But she loves to play at any moment – and her messing around with the kids and I are a sure sign she’s feeling well. Each of us has our lively routines we do with her. Most of them are precious and personal, and they help us stay connected. Here’s one I’ll share: lately she’s been fond of gripping my hand tightly when I help her sit down, then not letting go. She has quite a grip, but not one that can last when I tickle her with my free hand.

One night recently as I helped her into her recliner, Susan doubled over in pain, moaning loudly. She was obviously distressed and couldn’t talk or respond when I asked her what’s wrong. She continued as I asked her what happened, what was hurting. I couldn’t imagine what had happened so suddenly, so my mind was racing to figure it out. Just as my internal emergency alert system was fully engaged, she lifted her face from her hands and said “A-boo!” with a huge smile. She nailed me. She got 500 points for her acting, 500 for her timing, and a 250-point opportunity bonus.

Best scan ever?

We were back at UCLA this week for Susan’s scheduled MRI after a two-month interval. I suspected from her current strength and lack of symptoms that we’d have a good result. (She does have continual headache. Her strength is stunning to me.)

But we were amazed and thankful to see not only tumor stability, but some actual tumor regression. It’s a slight change, but when comparing Susan’s current scan to one nine months ago, there was an area of tumor on the left side that’s no longer there. We looked at the particular spot on the new scan and saw brain instead of contrast-enhanced tumor.  

Reasons not to get excited: 

1. Comparing to a nine-month-old scan is not as significant as a two-month scan.
2. Comparing two MRIs is not perfect because the head isn’t positioned identically each time, so the image layers don’t always match. What appears to be missing may just be a hidden layer on the scan. 
3. There are still other areas of visible tumor in the left frontal lobe and across the mid-line.
4. Medically speaking, the tumor type in Susan’s brain is progressive and incurable. 

Reasons to be thrilled: 

1. I realized with Susan and Dr Nghiemphu that after probably 50 or so MRIs over five years, this is the first time anyone’s ever mentioned the word “regression” while we’re staring at the images.
2. In brain tumor world, stability is great, so regression is awesome. It’s the opposite of growth.
3. We don’t know why Susan got brain cancer, why death was near in July 2007, why she’s had so many complications, or why she’s a five-year survivor when the average is about 18 months. But we know God is keeping us in his care and for his good plans.

We left UCLA in a little lighter air – released to come back in another two months, continue monthly Temodar chemotherapy, and live our lives in the meantime.

In early October, we attended the annual benefit for the UCLA Neuro-Oncology Program called Art of the Brain after receiving Dr Cloughesy’s invitation. The evening mingles supporters, patients, and caregivers in an outdoor reception among sponsored food tables followed by an inspirational program at Schoenberg Hall.

It was wonderful to meet other patients, reconnect with ones we know, and see the staff in fancy clothes instead of lab coats. Susan and I especially enjoyed greeting donors and thanking them for their support since we directly benefit from their gifts.

In Dr Cloughesy’s remarks, he acknowledged that Art of the Brain raised some $5 million for UCLA brain cancer research over 13 years. Meanwhile, brain cancer is more frequently becoming a chronic condition with better outcomes and extended life expectancies. He also said, sadly, these advances can be of little comfort for the person whose disease can’t be stopped in spite of everyone’s best efforts. The evening was a testament to the dedicated medical professionals, generous supporters, and remarkable survivors that make up brain tumor world.

www.artofthebrain.org

Spectacles

Amazingly, it’s been five years since Susan got the new glasses that followed visual loss brought on by her brain tumor and stroke. We visited the low-vision specialists at the Southern California College of Optometry at that time and got her fitted for a pair of single-vision lenses. Later, we discovered that a doctor at our usual optometry office specializes in low-vision and neurological patients, and is in fact an instructor at the college. Dr Ikeda arranged for Susan to have vision therapy in 2007 and 2008; but it had been a while since our last visit. 

We fixed that with eye exams a couple of weeks ago. I stayed with Susan for her exam so I could inform Dr Ikeda about her recent health history and other in details. Her aphasia hasn’t improved much and makes it a challenge to communicate. While I wondered how we’d manage when it was time for her to read the eye chart, my concern was realized. As hard as she tried, she got stuck on J. She saw an A said it was J. So was F and D and so on. “That’s a J,” she called R, frustrated it wasn’t what she meant.

Dr Ikeda’s experience with neuro-impaired patients quickly kicked in with a surprisingly simple remedy. He asked her to draw each letter in the air as she saw it. It was perfect. She saw a G and drew a G, even though she still said it was J. No matter. She moved down the chart, drawing each letter on an invisible tablet as the type became smaller and smaller. More surprising than the language remedy is how well she sees. I knew this already by the crumbs she finds on the table so easily, but her exam defined it. It was exciting to watch her work the eye chart so well.

Her visual field test confirmed the visual loss caused by her stroke – her right visual area is just wiped out. She’s done a great job learning to accommodate and has maintained what she learned in vision therapy four years ago. She adjusts by scanning horizontally, moving her eyes and head more than the rest of us need to.

Her new glasses have an updated single-vision prescription; plus Dr Ikeda added a prism on the right side to pull in more visual info to make up for her peripheral loss. The prism bothers her – but she’s getting used to it. She’s worn her new glasses all weekend after refusing them on Thursday and Friday.

We’re thankful for new glasses to replace what I thought in 2007 might be the last pair she’d ever have. We’re thankful for Dr Ikeda’s great help and my company’s great vision insurance. We’re thankful for our abundant life, for our kids, and for the goodness of God.

We'll repeat a blood test this week and will most likely begin Susan's next 5-day course of Temodar chemotherapy if her labs look okay.

Grieving and grateful

Susan’s mother passed away several weeks ago. Helen died peacefully from an aneurism and brain hemorrhage several days following surgery for a hernia. Her passing was as unwelcome as it was unexpected. It’s interrupted the rhythm of our lives the way it does when anyone close to you is no longer there. As the reality of her death sinks in, we continue to be attended by the peace in knowing she didn’t suffer or linger, knowing she’s in heaven because she trusted Jesus for her salvation, and knowing that seeing her again is but a matter of time. Still, we grieve deeply and miss her.

So many people have asked how Susan is doing with it. Of course, they’re concerned. It’s hard on anyone to lose a parent. Helen was the center of the family in many ways. But in her mother, Susan has lost the support that Helen provided, so much greater since Susan’s brain cancer diagnosis. If you wonder whether another tragedy has pushed Susan beyond her capacity to bear it, it hasn’t.

Susan thinks about Heaven all the time and is ready to be there herself. I think being a brain tumor survivor who knows the briefness of life gives her a better perspective than most of us. Susan is sad and misses her mom, but is beautifully confident she’s with the Lord. She knows she’ll see her again. I love her faith.

We witnessed God’s presence with us during the terrible sadness at Helen’s bedside when she was withdrawn from life support, her brain no longer active or able to sustain her breathing. With over twenty loved ones around her, we blessed her, prayed, sang a hymn, and cried together as she passed from this earth.

I was impressed with a big thought in that ICU – this is not how it’s supposed to be. We belong to each other, mothers and children, family. That’s forever. We shouldn’t have to say goodbye like this. Then a bigger thought came – this is why Jesus died and rose again. God knows this isn’t how it’s supposed to be, a fallen world diseased by sin and death, so he fixed it for us. That’s why we’re hopeful in our sadness. His gift of life has made all the difference against our biggest threats – I’m sad I don’t spend more time being aware of it.

We’re thankful that Susan’s own hospital visit a couple of days before Helen’s surgery was not a more serious event. That Tuesday, the day after her fifth dose of Temodar and Accutane, she developed a severe and welted rash over half of her body, an apparent drug reaction. When the Prednisone and Benadryl I had on hand didn’t relieve it, we went to the ER at UCLA that afternoon. It had been almost exactly two years since our last ER visit. They gave her more powerful meds and released her after several hours. She was better by the next evening. Whether Susan reacted to the chemo or the Accutane we don’t know. Dr Nghiemphu recommended we stop Accutane and resume Temodar in September.

We’re also thankful Susan’s brain tumor appeared stable once again after this week’s MRI. Her scans are regularly scheduled reminders of the tumor that remains in Susan’s brain. It’s an area the doctor watches carefully that spans the left-front toward the center. Given the choice of scheduling her next MRI in either one or two months, we opted for two and will return in November. The fact that Dr Nghiemphu gives us that choice is compassionate and empowering. She feels comfortable with a longer span, so we do. But if we want an MRI sooner, we can get one. I like having the choice and respect Dr Nghiemphu for providing it.

Susan is feeling pretty well. She still mixes up words and gets fatigued, but she’s gained strength and seems more resolved than ever to be as independent as she can. She laughs easily and knows more songs from memory than most karaoke machines. Susan is sweet, tough, and lovely. We’re grateful for all the expressions of love and sympathy we’ve received.

Five years

This month marks five years for Susan as a brain tumor survivor, a remarkable blessing especially as we were reminded yesterday in an article about glioblastoma that its average life expectancy is just 14 months. We’re so grateful she’s surpassed that by 46. Here are several notes as we celebrate this milestone.

 

Stable tumor

Susan’s recent MRI show her tumor is stable at this time, so she’ll continue her monthly chemo combination of Temodar and Accutane and have her next scan in two months. She’s tolerating the chemo well; and it helps that she can take it orally at home. The most notable side effect with Accutane is dry, sun-sensitive skin and dry eyes, so lotion, shade, and eye drops help.

 

Weariness

In spite of her commendable attitude that I believe has helped her survival, it’s been a long five years for Susan. There are days she’s just tired of it all – tired of her limits, tired of needing help, and tired of the grind of long-term disease. Still, she’s always encouraged with thoughts of Heaven and strengthened in the confidence there is a home waiting for her that’s far better than we can imagine. Most days, she says she’s doing better now than she was yesterday. I so admire her strength.

 

Gratefulness

We are grateful for five years more than I thought we’d have together when death was near after her emergency brain surgery. We’ve had a deeper, more meaningful relationship in the meantime. I’ve been able to love my wife in ways that would have been fulfilling for her before but are more so now. Our kids have been able to have their mom with them. She shares their lives. They help her and love her well.

We are grateful for family and friends, including a group of ladies who have given their time to provide companion care faithfully every weekday for five years, special people who have shown us love and met our needs with material gifts, and countless ones who care by continuing to lift us in prayer.

More recently, we’re grateful for a group of choir and orchestra friends from church who painted our house inside and out. It started with Gladys who noticed our peeling trim and put a bug in someone’s ear, Bob who organized a paintbrush-wielding strike team; and Bob, Pat, John, Mark & Joann who scraped, repaired, spackled, and even brought their own hired help for prep work. There were ladies who showed up early on Saturday and fed everyone. There were some thirty people who worked hard, blessed our socks off, and were done painting by 11:30. It was an extreme home makeover that took our house from eyesore to charmer in stunning fashion, and was a crazy gift. These things really do happen.

We’re grateful our lives have been transformed by brain cancer but not overcome by it. We’ve seen God’s faithfulness in covering us with grace while removing unneeded things from our lives and replacing them with greater things. We still sense his purposes at work in us and hear from others that they’re encouraged by us. Susan and I don’t know how these things work; but we know God does, and we know he’s working it out by the peace he gives us.

 

From Fears to Fear

I’ve been meditating on Psalm 34 lately, in which David praises God, invites others to join him, and proclaims “he delivered me from all fears.” This causes me to think about the number of things we typically fear in this world, the worst of which are illness, tragedy and death. Naturally, we tend to fear things that have destructive power over us. It’s understandable.

Shortly after David proclaims God has delivered him from all fears, he makes another remarkable statement: “The angel of the Lord encamps around those who fear him, and he delivers them.” He follows that with an imperative to fear the Lord, “for those who fear him lack nothing.” Then he shares an invitation to come, “I will teach you the fear of the Lord.”

Somehow a divine exchange took place for David that removed all his fears and replaced them with the one, supreme fear of God. The Lord makes quite a bargain, exchanging myriad, destructive, distracting fears for a single, wholesome, peace-giving fear.

I can identify with David, because the hard stuff that’s affected our lives would have ranked as top-drawer fears a number of years ago. Perhaps the great surprise of our situation is that God could lead us through unimaginable events and preserve us, even brightening our lives. And it’s not that the things we feared are gone – many are still with us. We just don’t fear them anymore.

God is showing us that he matters way more than our fears, that he’s way bigger than they are, and that his goodness and peace will preserve us. David says, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.” We’re thankful for the way God graciously moves us from fears to fear.

Thankful for a stable MRI

Our recent trip to UCLA for a scheduled MRI brought welcome news that Susan’s brain tumor has not grown since she started her latest chemotherapy last month. I had been concerned because she’d developed some symptoms that could be caused by tumor growth – increased confusion and chronic pain in both legs. Ruling out the most serious causes is always a relief, even though a problem’s origin remains a mystery. Susan’s cognitive decline could be “chemo brain,” could be recent tumor growth, and could be temporary. She has better days and worse ones, but thankfully has not had a continual or steady decline.

The leg pain came unexpectedly and didn’t accompany any med changes or injuries. We ruled out a blood clot (which would affect just one leg) as well as muscle loss using a blood test. That left us to wait for a lumbar MRI along with her brain scan so we could know whether she has a tumor on her spine – she doesn’t. That was a big relief to rule out because the symptoms fit that idea and because of her cancer history. The weird thing was the day of our UCLA visit happened to be her most painful yet and required us to use the wheelchair there for the first time in over a year. Her leg pain translates to weakness and less mobility, so she’s probably at about 80% of her prior level. A new pain medication seems to help somewhat.

God’s word has been a comforting source of stability for us these past years and a daily refuge for me. I’m spending time soaking in the Psalms lately and love how the writer (usually David) plainly names the problem he’s facing, cries out to God, and declares his resolve to trust, follow, and praise him. In verse 10 of Psalm 30 he says, “O Lord, be my help.”

It’s a remarkable request that is changing how I pray. David doesn’t ask God to send help or give him help, but to be his help. There’s a deep spiritual truth at work here, especially for we who are used to fixing things right now. Susan and I have always known God has the capacity to heal her. Why he hasn’t is up to him as our sovereign. Still, we trust God as we ask for healing. But as much as we want to be rid of her illnesses, we’ve also grown to know and rely on God’s grace these past five years. We could not have experienced God in the ways we have if he gave us the help we pleaded for when we discovered her brain tumor in 2007. We wanted help immediately. Instead of helping us with an exciting miracle that would have returned us to our normal lives, we’ve learned to know God in meaningful ways. God has been our help. His love, faithfulness, grace and mercy are richer in our lives than we could have imagined. We are growing to see our need of him as we see how he meets our needs.

David’s prayer is the wisdom of God’s child pleading not for the gift, but for the giver of the gift. If you have the giver, you have his gifts. That’s why for whatever our need, it’s so appealing to pursue God in it. If I need his peace, “God, be my peace.” If I need strength, “God be my strength.” If I need healing, “God, be my healing.” Be my help.

Susan and I think about Heaven a lot. We’re both going there, whenever that happens. When we pass from this time-bound earth into the eternity of Heaven, it will be Heaven because God is there. We’ll know him in ways that are hidden from us now, ways that require our faith. In Heaven, faith will become sight – who needs faith when you’re looking at what you believe in? We’ll know him. Doesn’t he want us to know him now? Can’t we pursue him now? Can’t what we discover about him help us now? God, be my help. We’re learning.

Persistent tumor growth

The scheduled MRI and oncology visit this week brought disappointing news that Susan’s brain tumor has continued to grow. We could see cysts on the scan that are larger than in November. We could see the how the tumor is encroaching into surrounding tissue, claiming more space in her brain and compressing her left ventricle.

The Carboplatin chemotherapy she’s had since last fall may have slowed the tumor’s progress, but not enough to satisfy Dr. Nghiemphu. Susan will begin her fifth chemo regimen as early as this week if her platelet counts improve. A person’s normal platelet range is 140-415. Susan’s count was 125 two weeks ago and 82 on Wednesday, well below the minimum of 100 needed for chemo. We’ll repeat her lab tests this week and be prepared to start Temodar plus Accutane orally at home.

The good news is the tumor has not been growing more quickly; and Susan is feeling and functioning pretty well.

We were understandably discouraged after our latest door-closed, here-are-the-facts chat with the doctor about brain tumor growth. The old questions started to voice themselves silently to me as we waited in the exam room: What if this treatment doesn’t work? How many other treatments are there? What if her tumor starts growing uncontrollably? How much time does Susan have?

These questions are futile, unanswerable, and useless to entertain. I changed the subject in my mind, asking Susan how she’s feeling with the not-so-good news. Just then our friend Daisy walked by our room and reversed her steps when she saw us. She’s the oncology tech who’s loved us well since 2007, who shares our faith, and who’s always encouraging. She stepped into the room, greeted us warmly and asked Susan how she’s doing. Susan said she’s doing well. I spoke up about our not-so-good news.

Daisy instantly dispelled our gloom with words that spoke into our souls. “God will help you,” she said. “You are not alone. People who know you are keeping you in their prayers.” While I heard a sister in Christ speak, I think I blinked my eyes a few times as I became aware of encouragement from the Holy Spirit. “I pray for you every day. I pray for all our patients every day, for their care and their quality of life.”

“You have today,” she said. “Tomorrow you have tomorrow. Hug and kiss, say ‘I love you’ each day. Take one day at a time.” We finished with hugs and thanks and blessings. As the atmosphere changed in my mind, Susan and I were thankful – for the gift of life, for each day we have, and for our loving God who met us in an exam room at UCLA. He reminded us of his constant support by ordering the steps of his servant Daisy to bring us words of life. Susan is ready for Heaven. We both want Heaven; but I’m not so sure about what happens in between. We’ll take one day at a time.

Chemo continues

Susan is doing well after her 6th Carboplatin infusion this week when lab work showed her blood counts were okay. She continues to be strong, fairly independent, and with the right amount of sassy. We’ll be back to UCLA in May for her next MRI, when I expect she may shift therapies to Temodar + Accutane.

We were invited again to participate on a panel at UCLA’s annual brain tumor conference several weeks ago. My mom joined us for the Saturday session and our son Adam sat with Susan and I during the “Understanding the Family Experience” workshop. Mindful of sharing time with others on the panel, I did my best to summarize Susan’s situation in as few words as possible and help her to interact as well. I asked her to share what it’s been like to go from being a working mom to a brain tumor patient and relate how she’s been able to with her condition for nearly five years. When she had trouble focusing her thoughts and finding words, I was not too surprised or disappointed since that’s an honest example of her experience. Sometimes thoughts and words get stuck.

We shifted attention to Adam as I said how proud we are of him and his siblings for stepping up in courage and responsibility when our world was turned upside down. He spoke well. One thing he shared was how glad he was that I had been honest with the kids from the first about their mom’s illness and its uncertain outcome. That approach had been validated at an earlier workshop for children of parents with cancer – it’s best for parents to be forthright about this stuff because kids are perceptive anyway, and can handle even hard things when the family stays close, loves well, and keeps communications open. Adam publicly complimented me on taking good care of his mom. He publicly received an immediate raise in his allowance.

The brevity of the hour became apparent after the other panelists shared and we had just a few minutes for questions from those in the room. One mom and caregiver whose husband has a brain tumor asked us what we do to stay positive. At the core of her question was, “Is there hope?” I desperately wanted to answer, and waited my turn. We heard about having a hopeful, forward-looking focus from one caregiver who tells her husband things like “When you get better” instead of “if.” We heard from a brain tumor survivor in the audience who shares the joy of guitar and banjo music with other patients at a treatment center. I was about to have my turn when the moderator interrupted, “I’m so sorry that’s all the time we have. People are beginning to arrive for the next workshop.”

I wish I could have said a word about our hope. I wish I could have spoken about God – that our hope is from God and is in God and is God. Our hope is as real as a positive word and as uplifting as music – but more so. Our hope has been infused in us by the same One who inspired the psalmist to say, “In the Lord I take refuge. How then can you say to me: ‘Flee like a bird to the mountain…When the foundations are being destroyed, what can the righteous do?’” His response in Psalm 11? “The Lord is in his holy temple, the lord is on his heavenly throne…” Our circumstances do not matter. Cancer does not matter. Death and dying do not matter. The Lord is on his throne – everything’s still okay.

Of course we hope and pray for healing. Of course we stay positive. Of course we celebrate simple joys with others. But these will not save us – only God can, and has. Susan knows where she’s going, and even in her improved condition, she joyfully and peacefully anticipates heaven. More than hope, we have heaven on deposit. Already its citizens, we’re just passing through. I wish I could have said that, but I guess I just did.