Our happiness

Susan’s status is thankfully unchanged, if not slightly better as she’s doing well weaning off steroids. We’ll be back at UCLA next week for another MRI and clinic visit.

Given Susan’s brain cancer, a number of friends from church who died this year, and several more dear friends who are fighting for their lives against cancer and other disease, we approach Christmas with a deeper appreciation for what that manger held two thousand years ago.

But first, I’ll not call it a manger – that word brings to mind the safe image found in songs and sketches. It was a feed trough for livestock. Picture a crude wooden bin holding grain or hay, stained with the slobber of cows or donkeys or sheep. Maybe one of the animals had chewed away its edges. Maybe some hairs from a cow's neck were wedged in a splintered front board and drizzled with muddy spittle. You get the idea. As much as we love lighted nativity displays, the Creator of the universe slept in the type of feed trough found next to puddles of urine and piles of manure. In our day, “manger” sounds too clean.

The distance the Son of God traveled to become our Savior is important to grasp for people going through hard times. It shows that God enters impossibly into messy and hopeless places and will deliver us. Paul’s eloquence on the incarnation in Philippians 2:5-8 is astounding:

In your relationships with one another, have the same mindset as Christ Jesus: Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death — even death on a cross!

First Jesus made himself nothing. Then he humbled himself. He came down all the way then came down even more. Who is this God, anyway? How much must he love us that a member of the Trinity would leave the glory of heaven to enter our world? And what does it say about him that he avoided the splendor that should attend the arrival of the King of Kings, chose the most helpless form of human existence, and was  placed a feed trough in an obscure Judean town?

That feed trough contained more than a baby – it contained love. Somehow, it contained the very source of love. The fact that God is all-powerful would be a terrible thing if he did not love us. We should fear his power and treasure his love. His power did for us what we could not do for ourselves in securing our salvation and eternal life, but his love made that power work on our behalf.

Love always has an object, a focus, what the lover can’t get out of his mind. For God, it’s us. Shall I summarize the Bible, the world’s best selling book of all time? The Bible is 1189 chapters contained in 66 books written by 40 men as they were inspired by God over a period of 1600 years. But we can pack over 773,000 words into just five: God is crazy about us. He’ll give us anything for our good because he loves us. His greatest gift to us was Jesus in that feed trough.

Love is costly. God’s love is unrestrained – he has paid dearly. Could we measure the cost of his creation, the cost of his disappointment at the fall of man, the cost of his incarnation, or the cost of his death and resurrection? It’s unimaginable. We can’t understand the extent of what God did for us, or why, but the heart of his plan was laid in that feed trough. Making himself nothing and then humbling himself means the One who spoke the world into existence would actually reduce his language for a time to coos and cries. The depth of God’s love for us means it’s okay with him if we don’t understand or appreciate its cost.

Love brings life. People who are loved become energized, brightened, and confident. Infants deprived of love become poorly developed. With love we live; without love, we die. Life came into the world and was placed in that feed trough, a new life born to Mary and Joseph, and eternal life for us through Jesus’ work on the cross. This life, this love, inspired the hymn writer to pen “Strength for today and bright hope for tomorrow, blessings all mine with ten thousand beside” (Great is Thy Faithfulness). This life and love are why we and others enduring hard times appreciate the meaning of Christmas.

It sounds weird to say, but these hardest days of our lives have also been our happiest. With Susan’s breast and brain cancers, we’ve experienced loss and turmoil – the stuff that comes with major crisis and upheaval. But we’re loved, and we’re learning good things about the God who loves us. Instead of despair, we’ve received joy, hope and peace. We have life with each other now and eternal life with God in heaven later. It’s such a gift. It’s all because of what was in that feed trough. Merry Christmas!

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.

Updates: Hank and Susan

Here’s good news from Cris about Hank:

Hi everyone, Sorry for not writing sooner, just got caught up in the good news and decided to get in the holiday spirit. With the help of a good friend, I got the Christmas lights up while Hank had his vaccine up at UCLA today. So excited my house sparkles!!
Anyways, Hank’s MRI was stable - Yay!! So, he will start his infusion of Avastin next week and he will be getting it every other week for as long as it keeps working. He is also getting the vaccine, so with both treatments we just pray that he will continue to do well.
Again, I want to thank everyone for you prayers, love, kindness and your unconditional support. Oh yeah, and all that great food from LBFD, you're AMAZING. We love you all soooo much.
Take care and enjoy the simple things of the holiday.....each other. Remember...Jesus is the reason for the season.
Love to all, Team Z

We thank God for Hank’s progress. We’re also thankful Susan continues to do well. November was blessedly quiet for us medically. She has regular periods of headache and tiredness, but gets relief from rest or meds. We’re progressing on her steroid taper and will have her Decadron dose down to 0.5mg daily this week. Past efforts to get free of the steroid have been interrupted by other medical events that required higher doses again, so we’re hoping this one goes well. 

Thanksgiving brought us to relaxing hours with family in Lakewood and Angelus Oaks following best-ever Thanksgiving worship at Emmanuel. Every year is the best ever because we see all the new ways God has been faithful. Like Psalm 92 says, “It is good to praise the LORD and make music to your name, O Most High, proclaiming your love in the morning and your faithfulness at night.” It IS good to give thanks to the Lord. Observing that his mercies truly are new every morning – that situation I feared actually turned out okay, or that hard time came attached with unexpected blessings – reminds us who is in control, that he is good, and his goodness is for us.
 

Most days may be ordinary and forgettable, but Thanksgiving Day allows us to take stock and sum them up. Thanksgiving brings perspective. We realize strands of time may flow by unnoticed, but seeing them strung together year by year, colored with reminders of God’s loving presence and faithful acts, a pattern emerges that encourages our faith. We see God weaving our lives into a tapestry of his careful, creative design – always unfinished, but always more beautiful. We’re thankful.

Good news for Hank and for Susan

Cris Zaveleta posted on CarePages:

Yes, we are home. AGAIN. and I plan on keeping it that way! Hank is doing well and is continuing to rest. He is having a little trouble with his right leg/foot and walking isn't easy, we have no idea what that is about, but we will figure it out and get him moving again.
I know I've said this a million times, but I just want to THANK everyone for your continued support, love, prayers, visits and yummy food. We feel so Blessed.
Hank will start the dendretic cell vaccine (clinical trial) in two weeks, he will get an injection every other week for a total of 3 injections. He will also start an I.V. medication-Avastin, in 4 weeks. I’m not sure how long they will give that one. He will continue to get MRI's every 6 weeks to keep an eye on things. That's the plan for now. I will keep you posted.  XOXO - Cris

Susan and I were able to visit and pray with Hank and Cris last week after Susan’s oncology visit, and were greatly encouraged to see how well he’s doing and how beautifully they trust God and reflect his peace. Strangely, it’s almost easier to go through an ordeal like GBM yourself than see others suffer with it. That was true for me concerning Hank and Cris until I realized we share the same confidence and hope in God. Ultimately, I know Susan and I are okay, that’s why we have peace – now I know Hank and Cris are okay, too.
 
I love Hank’s heart for the Lord and how he so freely voices his desire that people know Jesus. He shows neither pretense nor embarrassment in sharing his faith. He’s just a guy for whom the important things in life have been brought into focus while other things have been stripped away. He knows whose he is and where he’s going. As I pray for his healing, I’m also praying for the desires of his heart and thank you for doing the same.
 

Meanwhile, we’re encouraged once again with Susan’s latest MRI that shows her tumor is stable. I’d been concerned that more headaches recently were a sign her tumor was growing, but since she wasn’t worsening in other ways, I was cautiously optimistic. I figured we were dealing with her latest effort to get off steroids. The doctor agreed.
 
But the next day she told me the radiologist who viewed her MRI noticed signs of thickening of the lining outside Susan’s brain (the dura), a condition called intracranial hypotension. It usually occurs if there’s a leakage of fluid from the spinal cord from a spinal tap or an accidental puncture, and could have happened when she recently had some electrodes removed from her lower back. If so, perhaps the leak was a small one since she didn’t have the terrible pain that comes with rising to sit or stand. In any case, the condition usually resolves on its own. Susan has been feeling well lately, so we’re okay with not having a complete understanding of what happened.
 
We’re glad to have Susan well and free from tumor progression so we can concentrate on weaning off steroids again and hopefully her gaining strength and function. Her gains are small and incremental while memory and vision are still difficulties for her. Still, we’re aware that God is keeping us in his care as we seek him for healing, strength, and restoration. I’m reminded of God’s word that says, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:9) We continue to trust him in the mystery.