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.