Steroid taper continues

Aside from often-daily bouts with headache that require rest and pain meds, Susan continues to do remarkably well on her lowest dose of Decadron in at least the last 18 months. Headache is common as her body adjusts to less of the oral steroid and needs to jump-start its own natural production. But the fact that she’s been free from tumor or other problems for months means we can pursue this effort as far as possible. It also gives her a chance to shed the influence of side effects like bone loss and diabetes. We’ve learned to be ready for setbacks, but become more hopeful with the progress as time goes on. She’ll be back at UCLA before the new year for her next MRI and tumor update – but symptom-wise, things look good.
 

Today’s Brain Tumor News Blast from the Musella Foundation highlights research co-authored by Doctors Leia Nghiemphu and Linda Liau, Susan's UCLA neuro-oncologist and neurosurgeon. Their team’s 2006-2008 clinical trial study of 70 new GBM patients showed improved progression-free survival when treated with a regimen of Avastin (Bevacizumab) and Temodar (Temozolomide) following radiation therapy. Susan was not part of the study, but she's had each of these treatments during her course of treatment at UCLA.
 

Get the story: Journal of Oncology, Dec 2010 

While the clinical trial did not advance overall survival, it nearly doubled progression-free survival from 7-8 months to nearly 14 months. Such gains may seem small – but to me the study reveals the intensity of the battle as specialists try to find better ways to help GBM patients survive this devastating disease. That the study’s overall survival rate was 14 to 21 months makes us all the more grateful for Susan’s survival and good condition at 42 months. We’re also proud of the work her doctors are doing and glad she’s being helped by the best of the best.

A mild lapse, but improved again

Susan improved again after being burdened for a couple of weeks with greater fatigue and confusion most likely brought on by some combination of chemotherapy, a lower steroid dose, and a cold and cough.  Her blood counts returned to normal ranges the week following last month’s oncology visit, so she was cleared to have her 5th dose of CCNU on March 4.  She’s been understandably more tired, but again had no nausea or vomiting, thankfully.  Her next series of blood tests will determine whether she’ll have her 6th and final dose of this chemo. 
 

We visited UCLA again yesterday for an infectious disease follow-up with Dr Uslan, who tracks Susan’s progress from past complications like fungal meningitis and urinary tract infections and provides another set of eyes on her blood counts and liver function.  We were glad to have an uneventful exam and extend her next visit to six months from now. 

We celebrate Susan’s continued stability along with the gifts of life and our marriage as we approach our 25th anniversary on March 23rd.  In the months following Susan’s diagnosis in 2007, a generous and anonymous friend gave us a gift certificate for the Surf & Sand Hotel in Laguna Beach.  We were too consumed with crises to use it initially, but I thought of using it last March for an anniversary getaway since she was in pretty good shape.  I faced the brain tumor quandary – do we seize the day and get to Laguna while we can, or do I gamble on Susan living another year so we can celebrate our 25th in style?  With less than three months out from a life-threatening brain hemorrhage, would she have another?  Would tumor growth or infection or something else interrupt?  Would Susan yet become a GBM statistic for the 24-month average life span after diagnosis? 
 

I had our silver anniversary in mind, but I was trying to answer just another form of the original question – how long will Susan survive?  Since the answer is unknowable for us, I circled back to what we do know:  our lives are in God’s hands.  That resolved, I could go on faith that we’d get to our 25th together if it’s God’s will since he knows what’s best for us.  It felt good to have such a goal.  And it was strangely enjoyable to defy the beast of uncertainty made up of all the things that could go wrong over the next year.  It’s kind of like I was flipping GBM the bird even though I’m not the bird-flipping type.  Take that.
 

This whole brain tumor journey is stinking hard.  It’s hard emotionally, spiritually, physically, and financially.  It’s hard on Susan; it’s hard on me, on our kids, on our parents, on our family and friends.  I wish I could say I’m unwavering in my strength, but one day recently I became upset under the stress of getting errands and things done at home when I had to take time to help Susan.  Since I was obviously irritable, she apologized and said she’ll do anything she could to help.  My thought came immediately and shocked me:  “How about not getting a brain tumor?”  I held my tongue.  

A few months ago I concluded that with all of Susan’s deficits from vision to mobility to memory, I’m just glad to have her around.  I told myself if this is as good as it gets, it's okay.  We’re still together.  After 25 years of marriage and nearly three years in brain tumor world, her weaknesses have exposed my own.  Confronting my brokenness has been as hard as anything else we’ve been through.  I believe it’s one of the great human challenges under any circumstances.  I’m learning my strength will fail and even my resolve will waver.  But I’m learning to trust the one who loves us incredibly and whose promises are enduring:  

But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  2 Corinthians 12:9

Our 25th anniversary will be a special day for us.  We're grateful to belong to each other for so long and thankful for someone's caring gift so we can celebrate so nicely.  I’m so glad I met my Susan.

Some chemo effect and tumor activity

In spite of her generally stable condition, Susan's latest round of tests revealed a few areas of concern along with some recently increased headaches. The first of three blood tests beginning the fourth week after last chemo showed her platelet count dropped to 15% of normal, nearly low enough to require a transfusion. Since platelets are a clotting component, the risk for Susan would be another hemorrhage or spontaneous bleeding in her brain. With these results arriving when her week 5 test was due, I took her to UCLA on Dec 30 instead of a local lab so we'd be in place in case she needed a transfusion. Fortunately, her platelet count had reversed trend and doubled, although it still was too low to resume chemo at that level.

We returned to UCLA this Wednesday for her week 6 labs, MRI, and oncology visit. While the good news was that her platelets that had rocketed back to 100% of normal, her white cell count took a hit from the prior week. White blood cells are immunity soldiers that combat infection, so chemo remains on hold this week. These blood-count hits are the result of three doses of CCNU chemotherapy since September, although the effects actually occurred a bit later than expected. (My Susan is a strong woman.) She'll have another blood test next week to see if her counts have recovered enough to resume chemo. We have the pills at the ready.

Her MRI showed greater contrast compared to her two most recent scans, a sign that tumor activity has increased a bit – but thankfully not a lot. Dr Lea believes continuing CCNU will be effective for now and has other treatments in reserve when needed. The scan also showed increased brain swelling, explaining Susan's more frequent headaches. The doctor thinks it's caused by our attempt to reduce her steroid dose since last time, so we're bumping her back up to the nominal 2mg Decadron daily and will leave the taper fight for later. We remain thankful for the excellent care at UCLA and for Susan's continued stability overall.

I corresponded this week with a former co-worker who is also a Christian and in her own battle with advanced breast cancer that has spread to other parts of her body. The way she's holding on to hope in God stirs my admiration. I noted the remarkable similarities between Susan and her. Each has had several courses of treatment for life-threatening cancer, each is presently stable but medically incurable, and each is committed to wait on the Lord in faith. I did my best sum up our state of mind and spirit since Susan's GBM diagnosis 2 ½ years ago:

"Also like you, we trust the Lord with our lives and the outcome of this journey. We've learned that in spite of our troubles God still is good; and in fact his faithfulness is what sustains us. We've discovered the preciousness of suffering that allows us to appreciate the gift of life each day. What power do we have anyway but what God gives us? On one hand, we know what he is capable of doing. Healing from cancer is not a problem for God the Almighty. Yet we also live in a fallen world with the mystery of his will and accept the best plans of God the Sovereign. So, we pray and ask for healing, pursue every medical option, and take each step as it comes. We trust God completely, are hoping for the best, and are ready for anything. Ultimately, heaven will be a much better life for all of us!" This world is not our home.