MRI and mixed results

Susan’s two-month MRI on Wednesday showed mixed results. The area of tumor growth in the right hemisphere appears unchanged (that’s good), while that in the left has increased since November (not so good). The fact that changes on the left side are noticeable compared to November and not January means it’s growing slowly (good again).

Functionally, her overall improved state of the past few years continues. People regularly remark how well she’s doing. And her independent streak thankfully remains. She’s able to get out of bed and most seats without help. She ambles around the house with good balance even without her cane, and enjoys kicking Daisy's ball down the hall for regular doggy-therapy. She even gets from bed to the bathroom without my help most nights. If I’ve observed a cognitive decline recently, it’s only slight. So we’re grateful.

With five monthly infusions of Carboplatin on board, she’s handled it well except for a recent hit to her platelet counts. February’s injection had to be delayed a week when platelets dipped into the 90s. In August they were 315. She squeaked by this week at 100, the exact minimum needed for chemo.

We discussed continuing Carbo for the time being, and possibly resorting back to Temodar (her initial chemo in 2007) in combination with Accutane, a novel therapy that’s been found effective with some patients like Susan who are missing a certain protein on the molecular level. Her oncologist watches Susan closely. In spite of the cautious outlook, we remain happy and hopeful, and are doing well.

My new line of work as a writer with a mutual fund company has demanded more of my time and energy over the past six weeks, a move made possible since Susan has been doing so well and since we have such helpful friends and family to fill in the gaps. While I no longer have the luxury of taking her to every lab appointment, I’m even delegating chemo visits and some doctor appointments. Susan’s parents, our kids, and our friends are amazing and continue to support us in vital ways. Susan’s strength, gracious spirit and hopeful outlook make it all that much easier. We thank God for each day and always are grateful for his love and faithfulness.

Transformation

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

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

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

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

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

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

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

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

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

Stable MRI, more chemo

We ventured back to UCLA this week for Susan's two-month MRI following our busy and joyous holidays that flew by in hindsight. Well into her fourth round of chemotherapy, Susan's status has been remarkably normal. Rather than having the setback one might expect with tumor growth and chemo, she’s maintaining her level of strength and ability. In fact, it’s common now for people to encounter her and say she’s the Susan they remember. We’re so thankful.

Not surprisingly, her MRI was stable. We’re grateful to see no indications of recent growth, although Dr Nghiemphu is intently watching a couple of areas. Our full schedule on Wednesday featured labs, MRI, oncology update, chemotherapy, and meeting more brain buddies. Susan has done well after three monthly infusions of Carbopatin. She had only slight fatigue after the first two, with a few days of Zofran to prevent nausea. Her good lab results so far show her body has handled the chemo well.

The neurological exam that accompanies Susan's oncology visits is standard practice for brain tumor patients. “Hold your head still and follow my pen with your eyes.” “Squeeze my fingers.” “Lift your knee while I press down against it.” “Other knee.” “Smile.” “Frown.” There are probably a dozen questions and commands in all, including spelling “world” then spelling it backwards. (Even I have to think about that one.) Some of the questions deal with orientation of place and date. Susan can struggle with these, made even harder with word-finding trouble. But her cleverness came through this week when she was asked, “Where are you right now?” Her pause told me the answer wasn’t coming easily. Then she looked into the nurse practitioner’s eyes and said brightly, “I’m with you!” That was a good one.

I frequently use our blog to reflect on our situation and arrive at a helpful perspective. Four and a half years later, it’s still often surreal to me that Susan has a brain tumor. As much as we’ve adjusted to our circumstances, it’s still somehow hard to believe what’s happened. A week ago or so I recognized Dr Javahery coming out of a medical office building as we were about to enter for an appointment. He’s the neurosurgeon who performed Susan's emergency brain surgery in 2007. We’ve had no contact with him since then. Amazingly, he remembered Susan; that he did her resection on July 4^th, that we’d had to move quickly against her worsening condition, and that we sought treatment next at UCLA. He regrets not being able to operate under more controlled conditions, but said he had to de-bulk the tumor or she would have died.

Time did not permit us to relate to him what she’s been through, but it was enough for him to know what patients like Susan experience and to see her there with me. He shared a proverb with us: “Absence diminishes small loves and increases great ones, as the wind blows out the candle and fans the bonfire.” Having nearly lost Susan altogether, its truth resonates. Our brief and lovely encounter allowed us to encourage each other and made Susan and I glad to greet and thank him. The care of doctors like him has been a gift.

As I consider how our brain tumor experience has been transforming us, I’ll share those thoughts next time.

Chemo again

Susan started chemotherapy last week after Wednesday’s MRI showed her brain tumor has grown compared to earlier scans. The good news is it doesn’t appear to be growing quickly – viewing the current scan next to one several months ago shows only a slight difference. But the growth is clear when comparing this MRI to last year's, or this month’s PET scan to the one in 2009. To my untrained eye, the tumor area looks to be 15-20% bigger than before. It’s also clear especially on the PET scan that the “new growth” in her right hemisphere is not new and separate tumor tissue, but an integrated part of the mass.

Dr Nghiemphu recommended Susan start another round of chemotherapy now, not because it’s urgent, but because there’s tumor growth that needs to be treated. She’s also been paying attention to Susan's symptoms, not relying on visual evidence alone. She relates Susan's headaches last summer and cognitive lapse this fall to tumor growth. After discussing Susan's treatment options with us, we agreed with her recommendation to start monthly infusions of Carboplatin. Starting right away gives her time to bounce back before Thanksgiving and get December’s treatment done before the holidays.

We returned Thursday for chemo and got reacquainted with UCLA’s infusion center for the first time in about two years. Nurse Nikki fit us in to the schedule and gave us the run-down on Carboplatin. She calls it good, old-fashioned chemo. I’m thinking “hand crafted by local artisans in small batches for cancer patients with discriminating taste.” Actually, taste has something to do with it – one side effect is a metallic taste in the mouth since it’s a by-product of platinum. The drug has been in use since the 1980s for ovarian, lung, and head & neck cancers. Other effects include nausea & vomiting, slight hair loss, and neuropathy. It’s expressed through the kidneys, so Susan has two 32-ounce water bottles to drink each day to get rid of the toxins.

So far, she’s doing okay. She needs more rest than usual, but has been feeling well otherwise. We’ll be getting labs every two weeks to check for low white cell counts and kidney & liver function. Since chemo effects are cumulative, any problems are more likely to appear in future months.

As normal as life has gotten for us these past couple of years, the realities of brain tumor world still proclaim their presence, and not merely in Susan's latest tumor growth. There were just a few of us in the oncology waiting room at UCLA late Wednesday after we’d returned from Susan's MRI and were waiting to see the doctor and view her scan. I noticed two other couples, brain tumor patients and their caregiver spouses like Susan and me. After a few minutes, a nurse called one patient to the back for his infusion. A man who had looked pretty normal just sitting there struggled to rise after his wife stood up, then hobbled toward the infusion center with horribly spastic movements. That poor man, I thought. Look what brain cancer has done to him.

Moments later, my attention turned to the couple in front of us, a wheelchair-bound woman and the man attending her who appeared to be about 40 years old. She looked much older and had trouble speaking as he asked her if she wanted some water. Several times. He struggled to understand her and stepped away to refill her water bottle. She sipped from its straw when he returned, then labored to get his attention again. “Do you want to go to the bathroom?” he asked. Her reply pained me as she waived her arm up and down – “Gaaah.” He wheeled her toward us before turning down the hall. I saw the eyes of a 40-ish woman, evidently his wife, who appears fifteen or twenty years older. That poor woman. That poor couple. Look what brain cancer has done to them.

This Thanksgiving I’m thankful for Susan and for her remarkable progress over these four years. I’m thankful for her, her playfulness, her positive attitude, and her beautiful faith. We’re thankful to God for his presence, his love and faithfulness, and his gift of life. We’re thankful for our kids, each of whom is discovering their identity in Christ and learning to trust him more. We’re thankful to family and friends who pray and who stand with us to help in immeasurable ways. God has given us grateful hearts and the perspective to see our lives through eyes of grace, which helps us deal with our hardship. We’re thankful.