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.