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We witnessed God’s presence with us during the terrible sadness at Helen’s bedside when she was withdrawn from life support, her brain no longer active or able to sustain her breathing.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.