Another good MRI

We ventured back to UCLA on a rainy Wednesday for Susan’s scheduled MRI, suspecting we’d have a good scan since she’s had no symptoms of tumor trouble. We were not disappointed. Compared to November’s scan, her tumor is stable. Again. I think this is Susan’s 6th or 7th MRI without tumor progression dating back to 2009. When Dr Lai matched it with prior ones including her hemorrhage event in January 2009, he called her progress “incredible.”
 

We’ve learned to hold a doctor’s comments in check because it’s easy and unwise to project outcomes from such remarks, whether good or bad. But we’re genuinely encouraged that Susan’s tumor trend has been so positive for such a long while. Her brain cancer is not cured – it’s not even in remission – yet as long as this pause lasts, she gathers more resources for the next battle. She did have another urinary tract infection develop last week, and so began another course of antibiotics amid the reminder we still need to deal with the kidney stone that’s throwing off bacteria. Her next urology follow-up will be in February unless we need to step it up.
 

We’re so thankful for her current progress, for a good year overall, for the help we’re getting constantly from every direction, and for our peace and strength that are obviously God-given. As we look to the New Year, we know 2011 is infused with another gift borne of the Lord’s powerful support: hope.

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.

Hank update: upcoming brain surgery. Please keep praying.

Here's a note from Cris on Friday night:

First, let me say thanks to all of you for your kindness, your generosity and love that you continue to surround us with, we cannot do this without your support. Thank you, Thank you...

OK, as you know Hank had a seizure on Monday the 18th. On the 19th at 11pm he was transfer to UCLA, where his Doctors could monitor, test and try to find out what was going on. He stayed in ICU for a couple days including his birthday.

As the days went on, he continued to get better and today he was discharged. Yes, we are home.

We were told that nothing was going to be done at the moment, they were just going to observe the tumor and bleed for a while. This was the residents telling us this info, Dr. Liau was out of town at a conference.

Well, just as we were about to leave, Dr. Liau showed up, she told us that the tumor is growing fast and that the bleed is under the tumor so she's not sure how much the area is bleeding. Then she told us that she would like to do surgery as fast as possible since the tumor is growing so rapid. The last MRI Hank had was on the 12th, 1 day after surgery. It has grown a lot since and now the bleeding. She first said that she would like to do it on Monday, yes, 3 days from now. As you can imagine, we were surprised. When she went to check her O.R. schedule, it was booked. So for now, Hank will be back in surgery on Monday, November 1st. Yes, it is scary, but what choice do we have. They cannot do anymore chemo or radiation, so for now surgery is the only option. She will plan on giving him the dendritic cell vaccine some time after surgery.

Goodnight, Cris

Thanks for continuing to pray for Hank, Cris, and their family.

Note from Hank's wife. We need to pray.

Hi everyone,
We're back at UCLA in the ICU. It all started on Monday afternoon, Hank woke up from a nap and had trouble speaking. With the help of friends I took him to LB Memorial, they think he might have had a seizure so they took him to get a CT scan and found a bleed. They kept him in the ICU for observation and decided it was best for him to go back to UCLA, so we are here now waiting for tests and results. He is unable to speak well and is still having problems comprehending. I will keep you posted as we find out anything new. Thanks for your continued love and support.
Cris

Please pray for Hank

Please pray for our friend, Hank Zavaleta. Hank is a brain buddy of ours who was diagnosed with GBM in 2003 and is exceptional not only as a seven-year GBM survivor (off the charts), but also as a champion of faith, courage, and action. He meaningfully inspires the people around him – fellow firefighters, church family, and brain tumor patients and professionals. He and his wife Cris have invested precious time and energy to help Cranium Crusaders raise I think $150,000 to $200,000 for brain cancer research at UCLA. Click here for their website. We’ve also witnessed Hank in action at UCLA’s brain tumor conferences and the upbeat way he brings hope for other brain tumor patients and their families. Hank is just an incredible guy we feel privileged to know.
 

Hank’s story was featured several years ago on the UCLA Neurosurgery website. Click here. 
 

Sadly, an MRI in September revealed a new area of tumor growth after years of treatment with surgery, radiation, chemotherapy, a clinical trial cancer vaccine, and a clean MRI in July. Another brain surgery at UCLA last Monday went well in spite of some visual side effects. Then Hank & Cris learned a post-op MRI shows even more new tumor growth in an area behind his left ear. Dr Liau and UCLA’s brain tumor board will explore options that include more surgery, Avastin, or vaccine, but Hank will need to heal for a few months before having new treatment. This is obviously heavy news for a battle-tested family who’s been thrown into crisis mode again and is trusting God for the days ahead. Please join Susan and me in praying for healing and peace for Hank, Cris and their daughters.
 

Here’s a CarePages message from Hank on Saturday that includes a powerful word of advice from a brother who’s had his priorities sharply focused:

although i struggle with writing 4 now, please know that i feel all of ur love 4 us.
please keep us in prayer.....live....love.....and forgive,
hank

Thanks for praying.

On faith

With over three years since Susan’s brain tumor came along, we've come to accept the reality of our situation and trust God with the outcome. Every now and then I’m reminded of the grim statistics, and saw another today: fewer than ten percent of people with GBM are still alive five years after diagnosis. Still, Susan has outlived the average survival of 12-18 months and has responded to treatment each time her tumor has grown. So, we keep in mind that statistics are a collection of data about a topic, and they don’t determine the outcome for a person with brain cancer. As I noted recently, Susan has had no great improvement, but hasn’t had any nasty complications for a number of months, while her tumor has been stable for a year. Our stance remains the same – trusting God, praying always, hoping for the best, and ready for anything.
 

Given our outlook, we haven’t needed to ask why. I think lots of people get stuck there. Upheaval is frustrating. It doesn’t make sense. It’s not fair. It’s natural to bog down in it, shake your fist at the sky, and demand, “Why?” But we accept that if the question is unanswerable, we waste a lot of resources asking it. Instead, we’ve found peace in trusting the Lord and his good, mysterious plans for us, and focusing on our response to our situation. That's a work in progress; but we have peace. Even so, the desire for understanding remains, though not in a disruptive way. It just makes me wonder – what is God doing?
 

I was invited to sing on the worship team at church on Sunday at 9:00 and 10:30, an activity that used to be a weekly routine but now is something we can manage once in a while when Bob asks and when Susan is doing well. We used to be at church for hours on Sundays, interacting with lots of different people all over the campus. Lately it’s different – we park in a handicapped space near the side entrance, scoot into the sanctuary sometimes on time, visit the restroom after the 9:00 service, get home so Susan can rest, and interact with whomever we might see within that small space and time. But this Sunday we were there for several hours once again, more mobile, and able to run across a variety of people. The recurring comment amazed me: people are praying for us. We know this, but Susan and I continually heard words like, “I’m praying for you.” “We pray for you every night.” “You’re in our daily prayers.” “Our small group prayed for you this morning.” It was awesome to hear, in random encounters, over and over again. The message was unavoidable. It made me wonder – what is God doing?
 

Last night while dreaming I heard a voice say, “Faith is like a tree. It sends down roots and grows strong and tall, stretching its leaves to the sky.” Then I heard another voice. “No, faith is like a feather, delicate and blown around by the wind, and completely unable to fulfill its purpose on its own. But with others, connected to the body and the wings of the Holy Spirit, it soars to unimaginable heights.” THAT made me wonder.

Easy trip from pre-op to post-op

After deciding Susan would not have the Inter-stim bladder pacemaker implanted for good, there was still the matter of the electrodes placed in August in her low back – foreign objects now with no useful purpose. The outpatient procedure on Wednesday at UCLA to have them removed went smoothly and made us grateful to put the issue behind us. After checking in at 7:30am, Susan got to pre-op about 8:00, went into surgery at 8:30, and was in recovery in less than an hour. By the time I saw her a bit before 10:00, she was able to wake up and start shaking off the anesthesia. I was impressed with her chipper mood and the quick progress she made without complications or much pain. We left by 11:00, had a bite to eat, and zipped home. She was a bit tired that afternoon, but only slightly more than normal, and has been feeling well since.

This procedure going smoothly is more evidence of how well Susan is doing these days. She has frequent episodes of headache and fatigue and needs several hours of rest, but she usually revives later or by the next morning. She’s stable. There’s been no great improvement, but no nasty complications either for a number of months. We’re thankful. We sense God’s hand holding and guiding us, and we’re aware of the continual prayers people lift up on our behalf. God is keeping us – and we’re doing well.

When I was filling out Susan’s pre-op forms and came to the section about religious and other preferences, there was a question about preferred communication style. I recall the choices were “verbal,” “written,” “demonstrated,” and “other.” I overcame my brief urge to check “other” and write in “puppet show.” But I love the thought of it.

Later, when we went to the Plaza Deli for our meal, Susan’s turkey sandwich order came up before my chicken Caesar salad. During several minutes of waiting, I gathered up utensils, napkins, and drink refills. Susan wondered where my Caesar salad was. I said, “They’re looking for an emperor, but they’re awfully hard to find these days. They keep getting murdered. It’s the senators – and the hemlock.”

Tumor stable again

It's been about a year since Susan's last tumor progression and the beginning of her latest chemotherapy.  The good results since then extended her MRI intervals from 6 to 8 weeks and led to last week's scan and oncology visit.  The good news continues – her tumor was stable once again.  We're so thankful. The scan shows more swelling near the tumor site; but that's to be expected since we're tapering her steroid once more and are down to about 1mg daily of Decadron.

There's been little development on Susan's kidney stones or other urology issues, so the holding pattern continues. In fact, much of our life seems to be a holding pattern. Her brain cancer has not advanced, nor has it healed. She's made a phenomenal amount of physical and cognitive improvement especially compared to 2007 and 2008, but remains encumbered and far from normal. We're still at peace with the situation and trust God with the outcome. In a moment of reflection about her progress today, Susan said, "I'm getting better – slowly, but I'm getting better. Who knows what God has planned for me? I'm going to find out."

We had a wonderful Labor Day weekend in the mountains and enjoyed perfect weather in the forest at Angelus Oaks. Susan was able to relax on our new deck, join friends at the annual potluck, and felt well enough to venture up the road to a party at the Gebb's. We're supported on all sides by loving family and friends, and we're grateful.

Feeling fine

In spite of occasional spells of tiredness or pain, Susan feels well these days.  She’s been diligent about eating properly, so her blood sugar level has measured well below 150 for most of the past few weeks.  It’s amazing to test her glucose after breakfast when she has a bowl of cereal once a week instead of her usual eggs – cereal sends the level higher and proves the benefit of low-carb eating.
 

In discussing results of the bladder pacemaker during our follow-up urology appointment, Dr Kim decided the test was successful. Even so, Susan probably won’t get the permanent device since its manufacturer has not approved it when having MRIs, a frequent event for her.  When the issue came up just before surgery, I wondered why we were doing the procedure at all and why we didn’t know about the conflict earlier.  The company rep said there’s no known problem with the device, but it had not been specifically approved for use with MRI.  The trial device posed no MRI risk and would provide good information, so we went ahead.  Since then, Susan’s specialists have been chatting about the trade-offs; but I suspect we’ll be safe and pass on the permanent device.  She’s doing okay right now in that department anyway.
 

She’ll have an infectious disease follow-up next week and her scheduled brain tumor check-up after Labor Day. We’re ever in the Lord’s hands.
 

I often say Susan is the sweetest person I know. She handles her illness bravely, repels the urge to complain or have a sour attitude, and is always concerned about the welfare of others, especially our family. Her desire to do things right and obey the rules makes her a gracious patient.  Compliant by nature and having lost a good deal of independence, she sometimes even asks if it’s okay to hold her fork in her other hand.  My Susan is just so sweet. 
 

Last night as I soaked in her adorability, I told her again that I love her. She echoed her feelings to me.  Then she said she’s become more aware of feeling surrounded by the love of others, more than she has before, and that she’s feeling loved by people who never may have expressed it before. I agreed that lots of people love her and are showing it in many of wonderful ways. We noted the paradox of an illness like GBM – that it connects you more deeply to others than when life was normal and busy and overlooked.  We agreed that if cancer creates more meaningful relationships, that’s not a bad thing.

Another good week

With more distance between her and the conditions that led to July’s hospitalization, Susan continues to improve. Some of her sores from shingles remain and still are painful, but much less so.  We had several more urology activities, including another consultation on July 30 to discuss the treatment plan for Susan’s kidney stones. While the stones may be causing her ongoing infections (with another last week), we decided to table the issue until we know whether the bladder pacemaker may fix her incontinence and another point of infection.
 

Susan had an InterStim device connected Tuesday on a one-week trial basis. She has a controller the size of a large TV remote that clips onto her waistband and connects electrodes passing under her skin to the sacral nerve on the lower spine. The idea is that when urinary urgency or frequency is caused by disrupted brain signals, sending mild electrical pulses to the pelvic floor can help a person regain control. Susan has had some improvement so far.  We’ll evaluate the results on Monday with the urologist. If they look good, we’ll schedule another surgery to implant the device.
 

I continue to be amazed at Susan’s unquenchably positive attitude and enduring faith. To her, today’s headache is not as bad as yesterday’s and will be better tomorrow. Those shingles sores were a lot worse a few weeks ago.  That back pain will only last a few more days. True, her incomplete memory means her awareness of pain that continues even over days at a time is blessedly distorted. But her ability to draw from her reservoir of hope truly is life-sustaining. 

Speaking of her incomplete memory, I enjoy Susan’s remarks lately when it’s time for dessert. Since her diabetes became known to us, she now enjoys a low-carb fudgesicle after dinner instead of something with lots of sugar. She really enjoys it. A lot. She’s thrilled she actually can have such a treat. She’s astonished it’s not forbidden. It’s indulgent. It’s dreamy. It’s so satisfying. Carried away in a silky-cold chocolate stupor, she’ll say something like, “I know I have this treat every night, but what's nice about not remembering things is that I forget how much I enjoy it, so I get all excited when you bring it to me the next night. And now it’s the next night already so I’m really happy.” “Yep,” I reply, “First time every time.”
 

When we broke Susan’s overnight fast after surgery at noon on Tuesday, we gave thanks for our food and for all the support we get from doctors, family, and friends.  Susan recalled being greeted by someone at church on Sunday who’s familiar with our situation and said she’s praying for us. Susan doesn’t know her well. She thought about all the people she doesn’t know who know about us and support us in prayer. Her thoughts turned to Heaven.  She said someday she’ll go to Heaven and she’ll see all these people she doesn’t know now but will know then, and will have an instant connection to them. As she’s said so many times before, she said we have no idea about the things God has in store for us in Heaven. It will be amazing.
 

I think of what John says – that disciple who saw and heard and touched and knew Jesus on earth, and years later writes about what is to come. 

“Dear friends, now we are children of God, and what we will be has not yet been made known. But we know that when he appears, we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure.” 1 John 3:3-4

This is the hope that’s burned into our souls. This hope holds out the possibility that God could heal and restore Susan instantly for the remainder of her years on earth.  But greater than mere possibility, this hope holds out real knowledge for us.  We know we’ll have eternity with God that’s beyond anything we could imagine.

Next steps

The weeks following Susan’s recent hospitalization have brought gradual improvement, healing and strength.  Shingles has been painful for her, more painful and longer lasting than I thought they’d be.  Her sores have remained quite tender and were accompanied by severe headache for 10-14 days.  She seems to have had some benefit from taking Neurontin, a good remedy for the nerve pain that comes with shingles.  She also had relief from an ointment called The Shingles Solution that a friend recommended. 
As Susan has improved, she’s been having tests and consultations with UCLA urologists to resolve her urinary tract infections.  Last week's CT scan of her abdomen revealed at least one kidney stone in addition to the large one diagnosed earlier.  Dr Schulam may want to test the kidney for infection since it may be feeding bacteria to the rest of her plumbing. We’ll know more this week; but I suspect a treatment of some kind may happen soon. 

Meanwhile, an exam of Susan’s bladder by Dr Kim thankfully revealed no tumors or other disease.  A separate urodynamic study indicates the incontinence she’s struggled with is probably the result of her brain tumor. Dr Kim recommended a novel solution – a bladder pacemaker that localizes bladder control with a device wired to her sacrum or lower spine.  Although the surgery to implant it carries the risk of infection, the result should remove another cause of infection and improve quality of life.  She’ll have the outpatient procedure early next month.
As far as her diabetes is concerned, Susan’s way-high glucose levels we discovered a month ago have improved as infection abated and we de-carbed our diet. She’s also begun to taper her steroids again, a months-long process we’ve attempted so many times.  I’m hopeful that given her circumstances, she can be cleared of diabetes eventually and the drug (metformin) that comes with it.  We’ll keep the healthier diet though. 

A challenge to any healthy eating plan, we enjoyed Susan's birthday jubilee last weekend with a just-the-two-of-us dinner at Walt's Wharf in Seal Beach, thanks to Susan's parents.  There was a lobster tail with her name on it. Then on Sunday, we had a wonderful family dinner at Outback Steakhouse thanks to our loving friends Mitch and Joyce.  There was a rib-eye with my name on it and a dessert for all to share. We're so grateful to celebrate Susan's birthday for the third time since our brain tumor journey began and trust God for as many future ones as he gives us.

I recall a few episodes that came about during Susan’s hospital stay. We were in the midst of Susan’s longest ER visit yet at 36 hours.  Susan was quarantined in one of UCLA’s negative air pressure rooms while they ran tests to find out what was wrong with her. Did I mention they ran tests?  It’s a process of elimination, a scientific exercise to rule out this idea or that until they zero in on what’s wrong. Each test takes time and each result takes time. With doctors from the ER, internal medicine, neurosurgery, and infectious disease involved, there were a lot of Dexters in the laboratory. At one point about 18-20 hours into it, one doctor came in, asked some questions, and promised to return with more information after he consulted with the team. After he closed the curtain and the sliding door, Susan deadpanned, “Okay, see you in two weeks.”
 

One night after she’d been moved upstairs and Susan had her carb-controlled dinner, I went down to the cafeteria and succumbed to the frozen yogurt machine.  The vanilla splorted out with force and quickly filled the cup. I pressed on some M&Ms and topped it with a clear dome lid.  I asked the cashier as she pointed to the scale, “So this stuff is sold by the ton?” “Yes, and you got it full!” she replied. “Yep,” I said. “It came out fast. I didn’t fight it.”  When I shared the contraband with my delighted but now-diabetic wife, we giggled and whispered that we were getting away with something. “This is our way of sticking it to the man,” I said. “Because what the man doesn’t know – won’t hurt you.”  Susan said, “Hey, I’m sick anyway, so what’s the difference?”
 

One last item. Either I enjoy messing with cashiers or I’m a repressed drive-by comedian. Actually, it's both.The night Susan was discharged, returned to the cafeteria for a cup of coffee, filled the Starbucks cup, capped it with a sipper and sleeved it. Evidently, the cashier didn’t know if it held coffee, tea, or hot chocolate and needed to ring it up properly. “Coffee?” she asked. Unable to resist, I raised my cup.  “No thanks, I’ve got some already.”  At least she didn’t throw anything at me.

Resting at home

We finished a long day Friday in the hospital time warp, finally having Thursday morning’s MRI on Friday at 4pm, getting discharge instructions at 6:30, and actually leaving UCLA at 9:30.  Susan is resting at home now, receiving IV antibiotics and oral antivirals for the next several days.  She’s still tired and headachy as she recovers.  This episode will be summed up under the immune-compromised department, with dual infections of the nerve roots with shingles, and the urinary tract with e. coli or proteus or whatever the little bugger was.  Friday’s MRI was clear of any new threats for bleeding or aneurism, so we assume the blood in Susan’s spinal fluid was from having to poke her several times and manipulate the needle to get fluid moving.  We remain thankful our meningitis concerns were a false alarm that led us to discover and treat the real issues.
Our next steps will be follow-up visits with various doctors to treat infection, kidney stones, diabetes, and the brain tumor.  I think that about covers it.
 

While in the ER this week, a doctor from the internal medicine team wanted to clarify Susan’s “code status” after reviewing the advanced healthcare directive we have on file.  Thanks to Attorney Mark Doyle, Susan and I completed our will and trust documents in 2003. They include a power of attorney so each of us can act on the other’s behalf, and advanced directives that outline what life-saving measures we’d like performed if we’re seriously ill. Our chat with the doctor brought the idea from the legal to the practical. 
While the document dictates Susan’s desire that no extraordinary measures be taken to prolong her life if there’s no hope of recovery, the doctor needed to know what they should do if she “coded.”  Should they perform CPR? Should they intubate for breathing? Defibrillate her heart? Well, yes, of course, they should try to save her life.  These actions, the doctor pointed out, could leave Susan alive but unresponsive and lead to another decision families don’t like to make – when to “pull the plug.”  Wait – that’s different.  What we really want is to be revived if everything’s going to be okay afterward, but not if it won’t.  That’s the document we want to sign.
So with a brief incursion into the world of bedside decisions and medical ethics, Susan and I clarified it for the doctor – we want try to save her life. Her status is “full code.”  This is just another instance of our lame attempts to control the uncontrollable, leading us to recognize our lives are in God’s hands.  I returned to the document where all this stuff was already worked out and once again found the real peace of mind we seek, “All the days ordained for me were written in your book before one of them came to be…Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139: 16, 23-24.

Shingles

Susan has been diagnosed with shingles, a nerve-root infection caused by Herpes Zoster, the virus that also causes chicken pox. The biggest problem is the painful sores she's got right now, but they should clear in a few days. There's some risk of a neuralgia that could occur later - nerve damage under the skin at the infection site that causes chronic pain in about 20% of patients.

It's a blessing we were able to get her treated with anti-viral meds within 72 hours of the rash appearing since it may have moderated her symptoms. Her symptoms were classic - painful, non-itchy rash on just one side of the body, headache and malaise, with no fever. The rash is contagious for the virus; but those infected would get chicken pox unless they had them already. Shingles can occur later since the virus lies dormant and may spring to life when some has a weakened immune system like Susan. We're thankful to finally name and treat her condition, ending our current mystery.

She'll have an MRI/MRA scan today since her medical team is concerned about blood found in her spinal fluid that could indicate an aneurism. This scan will also be an early view of her tumor instead of the MRI she would have had in two weeks, so I'm sure we'll have a chat and tumor update in the next few days.

We'll meet with her medical team in a few minutes to confirm the outlook, next steps, and find out when she can come home.

Viral infection?

You know you’ve been in ER a long time when you get acquainted with your 3rd shift of doctors and nurses.  After over 30 hours in an ER isolation room, Susan finally was admitted upstairs under the care of the internal medicine team, also in isolation until they understand the nature of her illness.  While we’re thankful she apparently does not have another case of fungal meningitis, they’re treating her for a viral infection until they can rule it out. 
This hospital episode has been more puzzling than others, since usually we’re able to diagnose a problem (hydrocephalus, infection, hemorrhage) pretty quickly and begin treating it.  This one’s a mystery and has some new elements.  While she had some symptoms of meningitis like head and neck pain, she lacked a fever and severe neck stiffness.  We’re still waiting for the fungal cultures of her spinal fluid; but the low white blood cell count indicates no infection there.  She does have a solid urinary tract infection; but that alone should not cause persistent headache. 
Susan complained of a sore scalp on the back of her head and neck beginning on Saturday – painful, not itchy.  I noticed the skin there had become red on Sunday and had developed rashy sores on Monday.  The rash is now the focus of the mystery and is assumed to be an effect of a herpes simplex virus until a culture taken last night can be completed.  Meanwhile, she’s feeling okay and is getting pain meds when she needs them.  People rightfully get concerned when there’s an ER/hospital event; but this one’s not critical or getting wonky. I expect we’ll understand the problem soon and will be able to finish treatment and get her home in a few days. As always, we know Susan’s big issue with GBM and her many complications are in God’s hands as we ask him for healing and pursue medical treatment.  Also, we’re thankful to each of you who support us with prayer and expressions of care.

Still in ER, still testing

We had a long night in ER and are waiting to transfer to a bed upstairs and for test results to confirm a diagnosis. Susan is stable - she has pain and fatigue, but times of alertness and good spirits after resting. She became dehydrated and is receiving fluids.

She's had a CT scan (looks okay), blood and urine tests, and endured a marathon 1 1/2 hour spinal tap at midnight that would earn the respect of a maple syrup farmer. And she thought I was a drip.

Early spinal fluid results seem to rule out bacterial infection; but fungal results take longer. Urine was positive for a significant infection they're treating with IV antibiotics. If meningitis is ruled out, Susan could be dealing with a combination of the UTI and diabetic issues. That's it for now. We're confident in the Lord she'll improve with the right treatment and are grateful for everyone's support and prayer.

Meningitis again?

We're admitting Susan to ER at UCLA with persistent headache, stiff neck, confusion, and some sensitivity to light. No fever. As many as 4 Vicodin in six hours didn't relieve her pain. Her neuro-oncologist suggested we go to ER to check for meningitis, given her history. 

Susan now has a lovely new bracelet. We know the drill and expect to wait a while for tests. We're glad Susan has her port for easy IV access, and we have our Lord who's with us in all things.

Steroid-induced diabetes

After three years on Decadron, the steroid commonly used to prevent brain swelling, Susan has been diagnosed with diabetes.  I think this completes her collection of Decadron side effects, following weight gain, moon face, muscle loss, swelling of extremities, and bone disease.  As much as she’s needed it to prevent too much pressure in her brain, she’s needed to be rid of it for obvious reasons. 
 

We’ve tried to taper her from it completely at least half a dozen times only to have a complication occur that requires a full dose again.  She was completely Decadron-free for only about two weeks a couple of years ago before she had some tumor progression and needed 4mg daily again.  She’s had as much as 16mg daily during major events like a hemorrhage, but has spent most of the time in the touchy sub-2mg zone.  Quitting cold-turkey could be deadly since the body’s own steroid production ceases when the manufactured stuff arrives.  A slow taper allows natural chemicals to reappear, but requires weeks at a time at each level.  Susan was down to 0.5mg every other day when the stress of her kidney stone erased several months of progress and bumped her back to 2mg daily.
 

A routine blood test on 6/23 to check her platelet counts revealed her glucose was soaring at 405 mg/dl, about four to five times the normal level of 70-110.  The next day a nurse practitioner at UCLA suggested Susan see a doctor immediately out of concern for ketoacidosis, which can occur above a glucose level of 240 when the body’s inability to absorb sugars leads to the release of ketones that become poisonous.  We went to urgent care for more blood tests – Susan’s glucose had jumped to 435.  I learned the symptoms I’d begun observing unawares were classic ones:  dehydration, cotton mouth, frequent urination, and fatigue.  She’d had to stop five times to catch her breath as we walked to the lab parking lot the day before.  Thankfully, she responded to an insulin injection at urgent care and did not need to be hospitalized. 
 

Catching this new problem on a previously scheduled blood test was divine intervention, since we were preparing for Susan to travel up north for a week with her parents and our family.  The thought of her getting mysteriously and progressively ill while removed from her doctors and me by an eight-hour drive is not a pretty one.  Thanks to God, we caught it early.  We followed up with her primary care physician on Monday after she began an oral med called Metformin, took home a blood sugar monitor, and met yesterday with a nurse and diabetes educator.  We’re told this steroid-induced Type II diabetes may be reversible with lower doses of Decadron (again!), specialized diet, and weight loss.  We’ll do our best.

A three-year brain tumor survivor

Susan remains strong and stable prior to her next tests to update the status of her brain tumor and kidney stone.
 
June 26th marks three years since we discovered Susan’s brain tumor, an anniversary laden with paradox.  As a glioblastoma multiforme patient, she has surpassed a life expectancy that averages only about a year from diagnosis.  That’s a fact too obvious, since we’ve known four friends and one Massachusetts senator who have succumbed to high-grade brain tumors since our journey began.  Susan has beaten the odds. Yet with just 10% of GBM patients surviving more than five years, we wonder what the future holds.
 
Why is Susan is a three-year survivor?  Is it that at age 46 when diagnosed, she was younger than average and better able to rally her strength?  Is it that she had access to surgeries, medications, and treatments when she needed them along with world-class care at UCLA? Is it that her type of tumor has a mix of cells that responded better to treatment than others?  Is it that she’s got an unquenchable positive attitude?  I'm encouraged by these comments in a NY Daily News article: 

While new findings continue to extend the lives of patients with glioblastoma, for the moment, it remains one of the most dreaded diagnoses. For those who receive it, putting up a fight against the tumor may help.

“If you go to the Internet and do a search on outcomes in glioma, everyone will call it a terminal illness,” Dr. Henry Friedman, co-director of Duke’s brain tumor center, told the Times. “Your outcome is ‘dead on diagnosis.’ If you don’t have the philosophy that you can win, you have lost before you started.”

NY Daily News 09/01/09: Glioblastoma

While there may be a number of reasons Susan is doing well, ultimately we see God's hand at work.  He's keeping us.  It's just a mystery.  We come to the end of three years with no conclusion – except that Susan has survived this long.  Even the term “survivor” can be troubling.  Was Ted Kennedy a brain cancer survivor for 14 months until he died a month later?
 
Paradox enfolds our spiritual perspective as well.  We are burdened, but not broken down.  Fear attends, but God’s perfect love forces it to the margins.  In turmoil, we've received peace.  Our weakness has been overcome by God’s strength; our vulnerability covered by his faithfulness.  Yet while God is able to heal Susan from GBM, he has not.  Suppose he does?  A Susan healed from GBM will eventually die from something else. 
 
Through this paradox, a force drives us.  Susan is driven to be gracious, enduring, and hopeful as she strives to live. I am driven to care for and encourage her, to declare her a survivor, and to try to make some sense of our situation for our sake and for others.  Three years ago, we were driven to acceptance almost immediately and found the load lighter.  We were driven to behold the darkness and void, and realize it has not been given any power over us. 
 
We are compelled to complete this season of testing, whatever the outcome of Susan’s disease; to see it not as an affliction but as an experience with God. As for me, I knew I was in for a time of testing.  This was a test of faith I must pass.  Do or die.
 
Honestly, I have failed wildly.  But even wilder has been learning my failure was for my benefit, not God’s. My weakness is no surprise to him - but I needed to see it myself.  In terms of spiritual currency, I’m broke.  I’m so broke, sometimes I can’t even pay attention.  But now, in my brokenness, comes the greater part of the test – testing God. The paradox deepens.  

Who is this God who flips a season of testing so he's the one on trial?   Who is this God who decides in advance to bear with his fragile children so we can come to terms with our weakness, which itself is the key to knowing his strength?   Who is he, secure enough in the outcome that he's willing to allow a messy process to play out?  When everything's gone wonky, we're laid low.  Now God can get our attention, help us know he's near, and communicate deeply to our souls about his true nature.

• It’s exactly when your courage is sapped and you feel alone that you can know the God of Deuteronomy 31:8, “The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
• Seeing you’re awash in peril yields the real power of John 16:33: “In this world you will have trouble. But take heart! I have overcome the world.”
• It’s natural to tremble in the face of death.  In that darkness, an ancient enemy looms and would overtake me.  But when I notice God is there and he’s relaxed enough to “prepare a table before me in the presence of my enemies” (Psalm 23:5), then I am at ease too.  God himself becomes my confidence.

To be serene while facing death almost makes no sense.  To be joyful in hope with brain cancer is a bit of a contradiction.  To be confident in one unseen who’s waiting at the end of a journey marked by pain, loss, and uncertainty is actually understandable when you know who's really there. At three years, we’re growing more comfortable with the mystery.

Stable tumor and a kidney stone

Last week found us back at UCLA twice, first on Wednesday for Susan’s scheduled MRI and oncology visit.  Thankfully, her brain tumor is stable once again; the scan showing only minor changes and nothing to indicate tumor growth.  Dr Nghiemphu extended her next evaluation from six to eight weeks.  The watch and wait phase continues. 
 

We returned Friday for Susan’s abdominal CT scan and confirmed she has a 1.4cm kidney stone.  We met with two urology associates, Drs Brison and Schulam, who outlined our options for treatment.  Since the stone is fairly large, we focused on the middle-of-the-road treatment called uretoroscopy, where the doctor inserts a scope into the ureter and kidney to break up the stone with a laser and gather the pieces for removal.  We ruled out a lesser treatment of external shockwaves that would pulverize the stone but leave pieces perhaps too big to pass, and will also avoid a more invasive surgical treatment the doctors think would be overkill.
 

Still, the uretoroscopy requires several treatments at two-week intervals and leaves a drainage shunt in place that can be irritating and uncomfortable.  Dr Schulam demonstrated great compassion in asking Susan how she’s holding up with her complicated health situation.  He was open to defer treatment in case she’s weary or overwhelmed.  Susan, ever the gracious fighter expressed her willingness to proceed with, “Well, you have to do what you have to do.”  But given the likelihood of having to endure six weeks of shunt discomfort when the stone may not present any real trouble, Dr Schulam recommended waiting until mid-summer, getting another scan, and tracking any changes.  Meanwhile, if the stone blocks her urinary tract and begins to cause infection we’d know right away by the onset of persistent pain and would do the procedure at that time.  We felt comfortable with this approach; and I like the idea of giving Susan a respite from treatments so she can get stronger.  Meanwhile, we pray for her overall healing and restoration of her body. 
 

When they do the uretoroscopy to zap the stone, they’ll also do a routine check of her bladder for cancer or other disease, a customary practice that kills two birds with one stone while getting another stone out.  I knew I could work that line in there somewhere.

Kidney stones maybe and Peace definitely

One of Susan’s most persistent complications has been infection, from the fungal infection that caused meningitis to the various bacteria that have affected her urinary system repeatedly.  The return of proteus last month prompted another course of antibiotics that in the past has knocked back the problem pretty well.  This time, however, the infection returned within weeks and got us back to UCLA on Tuesday for an ultrasound to learn more.  The radiologist reported a high likelihood of a stone in her right kidney, most likely what’s called a struvite stone that can form due to a proteus infection.  Her infectious disease physician said such a stone will continue to cause infection, so it sounds like a vicious loop that needs an off-ramp.

Our next step is to meet with a urologist at UCLA and for Susan to have a CT scan of the urinary tract that will confirm or rule out our suspicions.  Judging from her persistent symptoms, the kidney stone idea makes sense.  If confirmed, I’m sure the type, number and size as well as Susan’s overall condition will drive a treatment decision; but we’re not ready for that conversation yet.  I hope we’ll know more soon.  Meanwhile, we’ll be back at UCLA next week for her scheduled MRI and oncology visit to update the brain tumor outlook, hoping at least for continued stability.
 

While chatting with friends at church last week, we spent a few minutes with two ladies who also have been facing some of life’s great challenges and the portent of change that threatens to follow.  One recently recovered from surgery and continues to regain her strength.  The other is caring for her husband who’s been battling complications from cancer treatment.  We have in common the upheaval of illness and treatment, the challenge of rallying to overcome, and the overwhelming peace of God who helps us.  Actually, since each of our health challenges is so different, God’s practical peace is our true bond.  Each of us has tasted it, touched it, seen it, and has experienced the remarkable sensation that somehow we’re surviving (even thriving) because of God and his peace.  Each of us is learning to trust God more, and we all agreed with amazement that the hard things we’re enduring are the very things that are teaching us to trust him. 
 

Our journey that began with the possibility of Susan having breast cancer in 2005 continues to be one of grappling with mystery.  Not the why – we abandoned that dead end a long time ago because the answer is mostly unknowable on earth and is not so important anyway.  We’ve grappled with the what and the how.  What are you doing, Lord?  How shall we respond?  The mystery is worth working out because at the center of it is the living, loving, almighty God who desperately wants us to know him, who has resources to meet our deepest need, and who will use any circumstance to get our attention.

Hard circumstances, then, are not a life-shattering trigger for despair but the stuff of life itself – a gift to unwrap and a glorious treasure to discover.  It's a weird thought, isn't it?  But I’d rather embrace the circumstance, take on the adventure, and find the prize.  Why should I fight it out of anger or worse yet, ignore it out of denial?  The tragic side of tragedy is to leave the gift unwrapped and God’s treasure unknown.

Last dose of CCNU, and Susan's godly burden

A blood test early last week determined Susan’s counts had once again improved enough to have chemo, her sixth and final dose of CCNU.  I hoofed it to UCLA Wednesday afternoon to pick up the single $35 capsule since I can’t get it filled at our local pharmacy.  She took it as scheduled Thursday night along Zofran to prevent nausea.  Dr Nghiemphu reduced the CCNU dose to 100mg to balance the drug’s cumulative side effects with the benefit of finishing the full treatment, since Susan’s tumor has been stable since she started taking it last fall.  
By Saturday, Susan was noticeably weaker and more confused, but has improved with rest.  We’ll return to UCLA in about six weeks for another MRI and oncology visit, followed by what we expect will be our next watch-and-wait phase.  Since GBM is progressive, it's likely her tumor will grow again at some point and require some other course of treatment.  Meanwhile though, we marvel at how God has kept us so far and we continue to pray for healing.
 
People who knew Susan before her brain tumor onset but haven’t had much contact with her lately may wonder what she's like now.  How much of the Susan they once knew would they still know?  
 
The fact is Susan's been through a major ordeal with major effects.  Her continual use of Decadron for brain swelling literally put her appetite on steroids and led to weight gain.  The drug also caused muscle loss and the classic “moon face” appearance of many brain tumor patients.  Her occipital stroke blinded her right peripheral vision and changed the way she sees color.  Prone to falling, she needs someone with her all the time.  She needs help to stand, can walk with her cane under guidance, can climb a few steps with support, and needs her wheelchair for longer distances.

Susan’s memory and word-finding have suffered also, turning her expressions into verbal popcorn.  Words have become interchangeable.  While we’ve always enjoyed being a bit tilted (or at least I have), now the absurd is not always governed by the will.  It’s normal for her to call our dog a cat, or to say our son just helped her after Lexie did.  Sometimes a thing she just heard gets mixed in with what she wants to say.  If we’re watching “24” and she can’t remember if she had dessert, she might say, “Did I already transfer the nuclear fuel rods?”  She sighs in frustration when she realizes she’s not saying it right.  When I know what she wants, I can clarify it quickly.  “Do you mean you’d like a frozen juice bar?”  Our routine at home usually makes the detective work pretty easy.  The fact that I can figure her out makes her think I’m a hero, which I don’t mind.  Her mix-ups sometimes may sound funny to the kids and me, but we attend to her need, never demean her, and patiently encourage her when she feels like she’s not smart.

People who experience brain trauma may experience some personality change.   An intellectual type might become more emotional.   Another person might become more cynical or combative.  Susan has become sweeter.  In some ways she's more childlike, sort of like a playful retiree being freed of earlier responsibilities.  And she's a bit less inhibited.  She likes to sing, especially funny songs, loudly.  She doesn't always care who's around.   She ends with a particular flourish that’s become something of a trademark.  I usually grade her performance, “That was a good one.”  She’ll respond smiling, “Thankyouverymuchy.”  She enjoys playful banter, reciting lines from movies or classic Saturday Night Live, and repeating silly clichés we’ve come up with over the years.  

Clearly, Susan is different in many ways than she was three years ago.  But the thing you might not know at first glance is Susan is intact.  Although much of her life has become so basic, her soul, her capacity to love, her sense of the eternal – who she is, really – is not only unaltered, it’s enhanced.
 
I came home one day last year and learned “The Price is Right” is her favorite TV program.  You think you know someone.  Maybe she was just usually available to watch TV on weekdays at 10am and it was the best thing on.  Whatever.  We record it now and zip through the commercials to keep our grip on the action uninterrupted.  Someone normally wins a showcase at the end of each broadcast, screams, jumps around, hugs Drew Carey, and is swarmed by family and friends.  Then they all clamber around the shiny car or boat and wave at everyone while the credits roll.  
But on one recent show, nobody won.  Both ladies overbid.  They had to settle for consolation hugs from Drew while he reminded them they’d still won the TV or Rice-A-Roni.  They weren’t jumping around or being swarmed by family, and with no great celebration on stage, the cameras were trained on the waving and smiling models and the waving and cheering audience while the credits rolled.  I made my best NBA buzzer sound and said, “Double losers!”  Susan didn’t share my amusement.  She sat quietly in her chair and said, “I don’t know why this is making me sad.  I shouldn’t watch things like this.  I don’t like to see them lose. I want everyone to win.”  
Her eyes grew teary.  I paused the screen when I realized something deep was stirring in her that had nothing to do with a TV show.  God can nudge us in the most mundane moments.  Somehow, seeing that loss on a game show moved Susan to feel burdened by people not reconciled to God.  “If they only had what I have, what Jesus has given me – if they only knew what Jesus has for them.”  Wow, holy ground, in our den.  I tried to comfort her, “I know it’s hard to see people who are lost.” 
 
“I just need a minute.  I’m just sad.”
 
The things Susan says can be unpredictable and sometimes awkward.  I certainly wasn’t expecting a profound spiritual moment during a game show.  But it’s a beautiful thing to have your heart touched by the things that move God's heart; and Susan’s capacity for that seems to be deeper now.  Compassion is God’s gift that compels people to act on his behalf to extend the goodness of his kingdom.  I wonder if those who don’t know Jesus yet have any inkling that the Living God and those he inspires are laboring over their salvation.  
 
I doubt we would have had this moment apart from Susan’s present condition.  I’m sure we’d be encountering God in other ways; but this one suits me just fine.  Susan has endured great loss and still faces a deadly disease; but with God’s peace and hope, we’re doing okay.  She is rich in spirit and is as vital as ever.  We’re connected in ways that only her brain tumor circumstances could have allowed.  Having God’s presence and protection in the face of destruction is amazing.  It reminds me of his promise in Psalm 91:7, “A thousand may fall at your side, ten thousand at your right hand, but it will not come near you.”  We stand on these words of life!

Clearing infection, stable scan

Susan’s lab tests early last week were positive for a urinary tract infection, explaining her recent slump.  We coordinated with her infectious disease physician, who meets the highest standards of care we've come to expect at UCLA, but is someone we’ve come to know too well over the years.   He prescribed an antibiotic that seems to be working well, given Susan’s gradually improving symptoms.  We’re relieved to learn there wasn’t something more serious afoot since a UTI is relatively easy to knock down. 

Wednesday found us back at UCLA for Susan’s scheduled MRI scan.  Gratefully, her tumor is unchanged once again, so the CCNU evidently has been working.  We had an unhurried visit with her oncologist, Dr Nghiemphu, discussing plans for her steroid taper, the possibility of having chemo next week, and her treatment schedule once we’re done with CCNU.  Susan’s recent series of blood tests show her platelets are low and trending lower, so she went for more labs on Friday.  If her counts improved, she may have her last dose of CCNU next week; otherwise, she'll be done after five doses. 

Susan spent an extra hour in the MRI scanner on Wednesday for a research study using MRS, or magnetic resonance spectroscopy.  This is a term that can make you feel really smart for a moment while you say it.  The sample of her brain tumor tissue taken in 2007 shows she has a genetic mutation that occurs early in the formation of brain tumors and seems to indicate a positive response to therapy and positive prognosis.  Susan’s neurosurgeon and neuro-oncologist asked if she would participate in their study since they’re searching for a non-surgical way to detect this genetic alteration in others during the early stages of brain cancer treatment.  They know she has it, so they’re experimenting with MRS hoping they can see it.  This extra scan not only was useful in their research it was a useful complement to Susan’s PET scan last year that will help the neuroscience team know more about her tumor.
 

We’re thankful as ever for good MRI results, great care on all sides, and for God’s never ending faithfulness for us.

More breathing room?

The past several weeks have provided more breathing room for Susan and me as we enjoyed an unforgettable 25th anniversary stay in Laguna Beach, more time without complications, and even a trip for her to Mammoth this week with family.  Our brief stay in Laguna offered pristine springtime weather, hours spent on the hotel balcony entranced by the seaside panorama, and a chance for Susan to have her feet in the sand again.  Our 9th floor room brought us eye-to-eye with seagulls and was a perfect perch to watch pods of dolphins, surfers, beach walkers, crashing waves, and even a couple of migrating gray whales.  An epic weekend would not be complete without a Jacuzzi bath for Susan (years since the last one) that rejuvenated her. 

The weeks since then found us resuming Susan’s blood draws leading up to next week’s UCLA oncology visit, gathering with some of my friends from high school, celebrating Good Friday and Easter with our church and our family, and getting Susan, Lexie and Adam away to Mammoth with the Rombergs.  Austin spent Easter vacation working on a mission trip to an American Indian community in Arizona.  Although the road trip was a bit taxing, Susan did well in Mammoth and had a pretty smooth week.  Lexie made me proud by taking great care of her mom and working hard to make sure she stayed safe.  I put in some longer hours and was able to focus on my work more than usual, although I missed everyone, Susan especially.  Even so, I can attest to the value of respite for the caregiver.  My time with her following our break finds me more relaxed and patient, armed with a deeper well of compassion and a better perspective than I had a week ago.  

But Susan hasn’t been doing well this weekend.  She’s tired, confused, and generally out of it.  She’s had several spells of nausea or vomiting at mealtime, so I’m on the alert for more signs of trouble.  She’s been headachy but has no fever.  After a couple of long naps yesterday, she seemed a bit better last night – yet the nausea returned this morning as we prepared for church.  I’m keeping her home to rest and will continue to watch her closely in case there’s more going on than just the effect of traveling and altitude.

Our Silver Anniversary naturally leads us to reflect on our lives as a couple and celebrate the gift of spending most of our years on earth with each other.  It’s a unique experience.  Spending a lifetime as husband and wife is different than being with a friend, companion, parent, or sibling.  Why?  Each of these relationships has a certain level of familiarity, compatibility, trust, and common interest that creates a bond deeper than a casual acquaintance.  But marriage goes deeper still, involving a level of physical, emotional, and spiritual intimacy unlike any other relationship.  In the most significant way, it satisfies our human desire to know and be known.  This is what God had in mind for us and is what Jesus spoke of in Mark 10:7-8, “’For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh.'  So they are no longer two, but one.”  This is the gift Susan and I have enjoyed so far for 25 years.

I’ve said before that Susan is probably the most gracious patient on the planet.  She has needs but does not make demands.  She hates the thought of being a burden and apologizes when she feels she imposes on others – which is frequently.  Her attitude compels her to try to do as much as she’s capable of doing and just makes it easy to care for her.  Her positive outlook prevails.  She’s confident today is better than yesterday, tomorrow will be better still, and God will fix what’s wrong either while she’s alive on Earth or when she’s with him in Heaven.  

Yesterday when I told her I love her like crazy, she said she’s not sure why since she’s not able to do anything.  She said she can’t love me very well.  I assured her our love is not about doing, and that she loves me perfectly.  I know and feel her care for me in whatever way she expresses it.  But more than that, just her being with me becomes our unity and is itself the expression of our love.

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.