Continued tumor stability and more steroid adjustments

We are giving thanks once again for another good MRI on Wednesday showing continued tumor stability. Is this God hearing and answering prayers? Is it effective CCNU chemotherapy twelve months ago? Is it great results from ongoing therapies with chiropractor Jim Augustine? Is it Susan’s dual Grade III & Grade IV cell types responding well to what we’ve thrown at them? The answer is yes in general – and God is keeping us overall. We’re just thankful.
 

As we reviewed Susan’s recent steroid withdrawal with Dr Nghiemphu, she cautioned us that Susan’s natural production of cortisol probably will not resume, so replacement steroids may be a permanent remedy. I didn’t know this was a possibility, but I guess it makes sense after 3-4 years on the drug. While we haven’t ruled out another attempt to taper off, for now we’re shifting from Decadron to Prednisone since it’s milder and has fewer side effects.
 

Susan faithfully mugs for me at Junior's Deli before we nosh.

We also discussed Susan’s painful and swollen lower legs that came on with the last taper and the possibility of a blood clot in her right leg – she’ll have a Doppler ultrasound scan tomorrow. We left Westwood with a lunch stop at Junior’s Deli and were greeted by owner Marvin Saul when he checked in to make sure our meal was okay. It was. He’s a nice man.

Like I said, we’re thankful. Nothing’s changed medically speaking about Susan’s brain cancer being incurable or the expectation it will progress again someday; but with each two-month span that passes with stable MRIs, we have more time for Susan to get physically & mentally stronger and for us to enjoy the gift of life together. If she were cured tomorrow and we resumed our former lives to accumulate anniversaries and silver hair, we’d be living with a greater sense of God’s presence and the awareness that earthly life is temporary and Heaven is our home. We’re doing that anyway.

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!

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.

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.

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.

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.

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.

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!

Waiting for improved blood counts

Out of a busy couple of weeks at my office and an uneventful span at home, here's a brief update.  Susan has continued to do well in general – but the platelet count in her blood has trended lower again in recent blood tests.  Her platelets at week four were at 58k, while last week at week five dipped to 42k.  The normal level needed to resume chemo is 150k; and the danger-low level that can lead to spontaneous brain hemorrhage is about 10k or less.  She rebounded on her own prior to her January chemo; and will have another blood test tomorrow in advance of her Wednesday oncology visit.  If her blood counts look good, we’ll proceed with chemo on Thursday.  Otherwise, she may need a transfusion.  We’ll see.  I’m also eager to see her MRI this week and hope for more tumor stability or, Lord willing, shrinkage.  

We’ve had several highlight moments in the past several weeks, including the morning of Valentine’s Day when I gave Susan her card and read it to her.  When I choose a greeting card, I usually know at a glance whether it’s the right style. I don’t need to read every word to know that it fits and doesn’t have a lot of syrup.  This card was no different and went into the cart along with the week’s groceries.  But when I read it to her, I was struck by the meaning of its simple message – that I love how good we are together, partners and friends who are there for each other no matter what. As my mouth formed the words, I was surprised how it so sincerely captured a truth about our relationship – that what I love about us is that I get to be “us” with her. 
Susan reacted immediately, saying she had a tingle-feeling when I was reading.  We both shared our love for each other as we embraced with tears.  I love that after losing so much in Susan’s abilities and in our lives, we continue to gain in affection for each other.  I love that after 25 years, our marriage is mature and full; and that one partner’s inability to buy a gift or plan a surprise doesn’t leave the other one feeling needy or resentful.  We had a beautiful day together and with family.  The best thing? I asked Susan, “Willst thou be my Valentine?”  She said “Yes, I willst."
 
One recent low point came as I finished helping Susan in the bathroom and she slumped over in weary frustration.  She cried as she thought of her condition and said she’s tired of it all. Thankfully, Susan doesn’t often feel defeated this way.  I tried my best to comfort her.  I can’t fix it.  I can’t change it or make it go away.  But I held her close and assured her I’m with her.  We’re together.
 
In contrast, at one recent bedtime Susan said God is getting everything ready; and everything’s going to be so much better than it was before, whether it’s while she’s here or when she’s in Heaven.  Her confidence and peace come from a place deep in her spirit that is unshakable, part of her foundation of faith the Lord established in past generations and strengthened in her lifetime.  The quality of the outcome is assured even while the nature of it remains veiled in mystery.

Continued stability

Susan has been doing well following her fourth dose of CCNU chemotherapy after waiting a week to see if her blood counts improved. They did, so she took her chemo pills at home on January 14. She was moderately more tired last week, but came through without nausea or vomiting. She takes Zofran for a couple of days after chemo to prevent nausea that seems to do its job well. The next side effect to watch will be in mid-February when she resumes weekly blood work prior to her next scheduled exam and chemo toward the end of the month. Drugs like CCNU tend to knock back the body's vital blood cells 4-6 weeks after having them; and each cumulative dose makes it harder to bounce back and raises the possibility of needing a transfusion. The complimentary alternative treatments she has three times each week with our chiropractor may be part of the reason she's holding up well so far. Dr Jim Augustine provides her with bio-cranial adjustments and electromagnetic pulse therapy; plus she takes daily supplements to support liver, brain, and digestive function.

We are grateful this continued period of stability. This week marks one year since Susan's brain hemorrhage and her last hospitalization.  This is by far the longest period of time without a hospital stay since she was diagnosed over two and a half years ago.  Having twelve months without a major medical event and its atrophy of inactivity has helped her gain vital strength. We also know many people continue to hold us up in prayer.  We are ever aware that God is keeping us in his care.
 
I chatted briefly with a patient I met at the chiropractor's office who apparently is familiar with Susan and asked me how she is doing. I said she's under continuing treatment for a brain tumor, but she's hanging tough and doing pretty well. At times like this I try to reflect the realistic optimism we've adopted. I do not choose to speak from gloom, that she has a malignant brain tumor with a two-year average life expectancy and a 100% eventual mortality rate. Nor do I choose to convey a false cheeriness that God will heal her since we know he can, but don't know if he will. That's a lot to blurt out, but it's contained in my response – yes, brain tumor; and yes, okay. But the kind man wanted to know more. How are WE doing?
 
I shared that we are doing okay, really. We are Christians and we trust the Lord. Yes, we trust the Lord he conceded, but what are we doing? I asked the kind man what he meant. He wanted to know if we're doing everything we can, pursuing every treatment – did we know about Dr Burzynski in Houston? I said I knew about Burzynski's claims and some of his successes and controversies. Ultimately, Susan was not eligible for his clinical trials since she'd already had surgery and radiation. The kind man wanted to know why surgery didn't fix it. I spoke of tendrils and aggressive brain cancer – it grows back. Then he said his wife had died of cancer eight years ago, and I understood. He couldn't fix it for his wife. He said you think you're ready for it, but you really can't be. The kind man still grieves.
 
I had to go help Susan from the treatment room, so I assured him we're pursuing every medical option available to us, and we also trust the Lord with our lives. We just do. Every day is a gift. Peter writes about living in "the tent of this body" (2 Peter 1:13) and receiving "a rich welcome into the eternal kingdom of our Lord and Savior Jesus Christ" (2 Peter 1:11). If we did not own that perspective, I'm pretty sure we'd be living in despair. So we continue to hope for the best, and in faith we are ready for anything. For now, God is keeping us and giving us his precious peace.

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.

Hanging tough in brain tumor world

Susan's condition has remained stable over recent weeks with some improvement in strength. Although she needs full-time care and assistance to walk and accomplish daily activities, she can more easily lift herself from an elevated chair and handle small stair steps. We're so grateful to enjoy another period without complications, infections or hospitalization. More importantly, I'm amazed at Susan's attitude and outlook, and her tenacious inner strength. She's gracious when needing help, positive that she's doing better today than yesterday, and usually ready to kid around and be sassy. On Sunday as we were leaving between church services, our friend Randy drove up the crowded aisle and asked if he could have our parking space. I shut her door and I joked it would cost him five dollars. I got in the car and told Susan about it. She said, "That's good. You gotta get 'em when you can."

Every Christmas I look forward to when I once again realize the magnitude of God's gift to us in the birth of Jesus. Sometimes it's in a scripture, or in a song; in prayer or in hearing a sermon, or in a God-breathed human encounter. I'm still soaking up this year's moment. Todd VanEk had a word in his sermon Sunday on Luke 2:12 where the angel says to the shepherds, "This will be a sign to you: you will find a baby wrapped in cloths and lying in a manger." Everything about this announcement shattered people's expectations about the coming of the King of Kings. The news was given to shepherds, who were poor and marginalized. The King was a baby – weak and dependent, clothed in rags, and lying in a feeding trough for livestock. The urine and manure may have been at a safe distance, but the smell wasn't. Then Todd brought the zinger. Jesus was born into a mess. The "sign to you?" There is no human mess Jesus is not willing to enter, bringing healing, strength, grace, and mercy. Wow. That was it. That's the room in my heart I could prepare for Jesus this Christmas, and he came right in.

I was not prepared for the living example of Jesus' love that would follow just minutes later, after church. The woman sitting in front of us with an infant turned out to be our friend Patti. I did not know she and her husband were expecting. We learned they stepped in as parents of their relative's baby boy after he suffered abuse and broken bones in only the first six weeks of his life. He's nine weeks old now. They've had him for three, and are willing to adopt him if the legal arrangements can be made. For now, these 30-something Christian parents are adjusting their lives, their family, and their careers to make room for another baby boy born into a mess. This is selfless love – astonishing and familiar. It's a fitting display of God's Kingdom that arrived on Earth with baby Jesus in Bethlehem. As we prayed with tears, I could see the Spirit of our Savior bringing healing, strength, grace, and mercy to this baby and to this family – just like Jesus has always done. I'm so glad to have met him again.

Chemotherapy, Round 3

Yesterday was co-pay mayhem following Susan's blood draw at UCLA at 7am, MRI at 8am, and oncology visit at 9am. Then we winged it down to Torrance for her dermatology exam and back up to Westwood for an infectious disease follow-up. The only actual infectious disease I noticed was LA traffic. So much schlepping in one day – I ought to have my skin examined. Wait, we did that. The schedule worked out perfectly until our first appointment. It took longer than usual and cramped our timing. Thankfully, the other two doctors accommodated our delays. We pulled into our driveway by about 5pm with Susan mostly nap-less and dog-tired.

Her MRI revealed slightly more new tumor growth than in August, confirming her need to begin a third round of chemotherapy, so she begins oral CCNU (Lomustine) tonight. We spoke at length with Dr Nghiemphu about Susan having a biological agent called XL184, but were put off by its similarity to Avastin with the potential to cause another hemorrhage. We might have decided otherwise if the new tumor tissue were faster-growing and had lots of blood vessels in it, but we think CCNU will handle the need at this time. XL184 sounds promising for high-grade tumors since it cuts off blood flow like Avastin, plus it inhibits certain chemical receptors involved with the cancer. I deeply respect Dr Nghiemphu's approach in making recommendations like these. She informs and explains, and outlines potential benefits and risks - but since an outcome is so uncertain, she stops well short of dictating a treatment. Instead, she invites us into the push/pull of a complicated decision until we arrive there together. The quality of her care is so good – and gives us confidence and peace of mind in the process.

Our dermatology and infectious disease excursions came about because Susan developed two suspicious sores about two weeks ago. They emerged quickly and had too many cancer-like symptoms for my comfort, especially since Susan had a pre-melanoma removed about 5 or 6 years ago. Thankfully, they've already begun to heal and evidently were not caused by anything internal, although their origin is unknown. We walked away with a really good antibiotic cream from the dermatologist and the availability of the ID doctor at UCLA in case we need him.

Lord, sometimes I'm tempted to ask why we have to walk this road of suffering, but I hold back. I know "why" is a mystery on this earth. It may not matter in Heaven. This road is crowded - I'm sure if I knew how many were making their way along, I couldn't bear it. Some people have it way worse than we do, so how can I complain? Some people's whining seems louder than the size of their troubles; but if they've reached their limit, how could I tell them to be quiet? It's better not to compare.

I remember the days before disaster struck. Susan and I were a team in marriage, as parents, in ministry, and in life. Our activities were intertwined in the fullness of those pursuits while the years tumbled out too quickly for us to notice – date nights, anniversaries, soccer teams, kids club, slumber parties, homework, bible studies, dramas, choirs, board meetings, work days, ski trips, the occasional doctor visit, and lots of fun along the way. How quickly life got up-ended! Our game board got turned over; and many things I thought were permanent simply fell off. I didn't know life could be so basic. Alive. Today. Each other. You. At times, it seems that's all we've had. Mostly though, we live somewhere in the middle – date nights have become doctor appointments, that sort of thing.

We grieve at losing the life we had and we grieve the absent promise that life will return to what it was. But what's surprising is that life still offers fulfillment and satisfaction. We have hope, joy, and peace, thanks to you. Somehow, we understand everything is ok. And we know you better. Knowing you provided for us while things were going well was nice, but having you provide for us while we suffer is phenomenal. There's something about your comfort now that tells us you love us, but in a way we couldn't notice until so much had been taken way.

Lord, you know we just met some new friends who learned their son had a brain tumor when he was just ten months old. That was their on-ramp to the road of suffering. You know our other friend just found out he has cancer after his surgery last week. That was his on-ramp. You know about my co-worker's friend whose 22-year-old daughter just died in a 405 Freeway car crash, leaving a toddler without a mom. Her family quickly merged onto the road of suffering. There are so many people on this road – in fact, I'm pretty sure every person on earth will take one of the on-ramps at some point. It's hard, Lord. Upheaval. We can't know why it happened or how it will turn out. And there's no off-ramp in sight. But you know all these answers – why the suffering, how it will turn out, where the road leads; and you choose to keep them hidden from us. That's ok, really, because you know what's best for us. Please help me to focus on you and not our circumstances. Help me to trust you with the mystery.

Looks like more tumor

With the results of Susan's Dopa-PET scan on Friday, it appears she's experiencing tumor growth and will need to restart chemotherapy in the near future. Dr Nghiemphu wants to match the PET scan with Susan's last MRI for a better review; but she believes the scan confirms a new area of tumor near the midline and ventricles. She'd like to see the results of next week's scheduled MRI before we decide on a treatment, most likely another type of chemotherapy. In March when we discussed the potential for tumor recurrence, she said there are a number of chemotherapy drugs she believes will be effective for Susan's combination of Grade III/Grade IV tumor cells. Since we've gotten beyond the first and second lines of treatment of Temodar + radiation, then Avastin + CPT-11, it seems we're venturing into an individualized mode where you find something effective and stay on it as long as it works. Thankfully, Susan is a brain tumor survivor who has taken as long as two years to reach this point.

There is relief in understanding what's wrong since Susan has slipped below her fine form of month or two ago and the burden on her system has become more evident. There's hope in anticipating the next level of treatments will do their work to help her and that God may heal her by any means. And there's comfort in knowing that God has us in the palm of his hand, just as he has all along our brain tumor journey. I find these words from 1 Peter 1:6-7 especially encouraging – Peter praises God for our living hope, for our inheritance, and for God's protection, and then writes:

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

Our help is not in gold, or medicine, or even in our faith itself. Our help is in the name of the Lord. I can't say it any more plainly – we trust him.

What brain tumor?

I called home from the office this morning to check with Susan and see if she was feeling better. She’d had a few symptoms return after a weeks-long absence and was feeling tired and discouraged when I left the house. By mid-morning, she’d slept some more and was feeling well. When I called, we had one of those fluid, lucid conversations that are becoming more commonplace and lead me to wonder, “What brain tumor?” Susan is clearly in the best shape she’s been since last year at this time when hydrocephalus set in and set off a season of infections, fractures, illness, and hemorrhage. Her improvement over the past 3-4 months has been remarkable – and most welcome, since it’s ushered in a level of normalcy to our household that we’d missed for a long time. This morning’s episode reminded both of us how little she’s been ill recently and alerted me that complications could interrupt our lives again at any time. We remain, as ever, squarely in the Lord’s hands and thankful for Susan’s healing, strength, and restoration.

We had a conversation at church recently with some friends who have been faithful in support and prayer for Susan. A typical 5-10 minute chat involves the weather, the movie you saw, the team you like or what the kids are doing, so it’s not ordinary for a person to speak of death and dying in the span of a casual conversation. But when Kristen shared that she’s been encouraged by Susan’s faith, Susan responded honestly in what’s become a normal (but not too frequent) acceptance of our situation. She said something like she couldn’t have expected all that’s happened, but she’s ready to go home to the Lord whenever he’s ready for her. She believes God has a purpose and work for what remains of her life on earth, but when it’s time to go to heaven, it will be far better than being here.

Her comments demonstrated Susan’s peace with her circumstances, her trust in whatever the Lord’s plans are for her and the glorious confidence she has in her future. I couldn’t help but note the odd contrast of her words considering how well she’s doing, but I also cannot imagine a greater gift than God’s perfect love that casts out all fear (1 John 4:18). It’s just like our good and sovereign Lord to solve a problem for us that way – if he doesn’t remove the circumstance that’s giving us trouble, he’ll take away its ability to trouble us.

Paul writes, “Where O death, is your victory? Where O death, is your sting?” The passage he quotes in 1 Cor 15:55 is from Hosea 13:14,

“I will ransom them from the power of the grave; I will redeem them from death.
Where, O death, are your plagues? Where, O grave, is your destruction?”

Put another way, the Inez Andrews gospel song says, “Lord, you don’t have to move my mountain, but give me the strength to climb.” I just love that Susan is living it.

More infection, persistent weakness

This is a rare Sunday morning when Susan and I stayed home from church. She has headache and abdominal pain and needs to rest. Days like this seem to come and go more frequently and interrupt Susan’s otherwise cheerful spirit and initiative. Her funk was more intense a week ago on Saturday when I became convinced infection had returned. I spoke to Dr Leia about Susan’s confusion, weakness, and pain (but no fever), so she prescribed another round of oral antibiotics and suggested we get some labs done in a few days. We still had some Cipromycin on hand from last time and were able to get her started without having a prescription filled. By Tuesday, Susan’s response was mixed – improved memory strength, and mental status, but with periodic slumps in each area. On Wednesday, Dr Leia ordered labs for blood and urine and extended the Cipro course to seven days. The lab results showed slight infection, a reasonable fact since five days of antibiotics knocked it down some. Right now we’re stumped about her persistent symptoms and realize there are several factors at work, as always, like the effects of her hemorrhage, infection, or possible tumor progression. We’ll know more about all of it this week when we go back to UCLA for more labs, an MRI, and a visit with Dr Leia.

Tomorrow will be our 24th wedding anniversary. We got married in 1985 between the winter and spring quarters during my first year after transferring to UCLA. I was sort of an oddball student since I commuted to campus from Bellflower, wasn’t involved in activities there, and was married by my 22nd birthday. After I had proposed to Susan in 1984 (at Tommy’s in LA so she wouldn’t expect it), we didn’t want to wait until summer of 1985 to get married, so UCLA’s calendar determined the date – Saturday, March 23, 1985. I rushed out of my last final exam on Friday to make it to our wedding rehearsal that evening. I think I got a “C” on that one and felt satisfied I had a good excuse in having my thoughts on bigger things.

As I said to Susan the other day, twenty-four years is almost a long time. Next year will be our Silver Wedding Anniversary, which is a year later than almost a long time. In late 2007, someone generously and anonymously gave us a gift certificate to stay at the Surf & Sand Hotel in Laguna Beach, a perfect thing to bank for a special occasion like our 25th. But since one of us has a malignant brain tumor, shouldn’t we use it now? You know, “carpe diem,” and all of that? We decided to wait and have something to look forward to. She’s made it this long.

The Word of God is so much my food for life. I need it for guidance, strength, counsel, and to slap me out of foolish thinking. During this season of Susan’s illness, we’ve had our lives emptied of things we thought were important and even indispensable. With life becoming more basic and undistracted, I realize how temporary we are, how small our efforts can be, how quickly we exhaust our strength, and how little we truly understand. This truth came alive recently as I read and rested in Isaiah 40, a passage that has great importance for me. In huge contrast to our lot, verse 28 says,

“Do you not know? Have you not heard? The Lord is the
everlasting God, creator of the ends of the earth. He will not grow tired or
weary, and his understanding no one can fathom.”

Wow. My life is but a breath on this planet – but he’s the everlasting God. I can produce nothing that will last, really – but He’s the creator of the ends of the earth. I’m often wiped out by 9pm – but he will not grow tired or weary. I don’t know what our cancer journey means, why it’s happening, or how it will turn out. But I am getting to know God better. His goodness is overwhelming, and His understanding no one can work out, think through, or comprehend.

A rapid path to another brain surgery

It's been a wild few days. What began as flu-like symptoms for Susan last weekend progressed to persistent fever and cognitive decline on Monday and Tuesday. After getting blood drawn at the UCLA treatment center yesterday, concern about the return of meningitis brought Susan to the ER for tests instead of getting chemo. A routine CT scan revealed bleeding in her brain and moved her to observation and testing in the neurosurgical ICU. Infection may also be present. Susan's neurosurgeon Dr Liau evaluated the series of scans Susan had over the past 24 hours. The mass appears to be a bleed, but could be an abscess or even tumor growth - in any case, it needs to be evacuated. This will be Susan's third major craniotomy and will reopen the same incision and skull area as before. Surgery begins tomorrow at 7:30am and is expected to last four to five hours. Dr Liau will also remove her lumbar-peritoneal shunt, place a temporary drain, and add a permanent ventricular shunt later. Talk about a brain drain. Susan remains the world's most gracious patient and is ever the fighter. We trust God implicitly, continue hoping for the best, and are ready for anything. We are grateful for everyone's prayers.

Coming home

Susan continues her improvement and will be discharged from the rehab hospital next week, returning home for the first time in over three months. We’re very grateful and a little apprehensive. Susan will return in much better condition than in July, when weakness intensified by hydrocephalus, infection, and steroid-induced muscle loss made her unable to walk and required 100% help with everything. Since I haven’t been with her recently for more than 5-8 hours at a time, I’ll soon learn just how much she’s improved. I’m arranging for care at home to be provided by several sources, including a part-time paid caregiver. Susan still needs 24-hour supervision and help to stand, transfer, walk, and do other basic activities. She may be able to handle the multi-disciplinary therapies with Rehab Without Walls like she had a year ago, but not until she’s able to handle three hours at a time. Their evaluation on Thursday didn’t go well since she’d been up all day, had a full therapy session, and needed to sleep.

Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.

I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”

This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.

“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.

“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.

The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).

This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?

A fall and a fracture

Following Wednesday’s chemotherapy treatment at UCLA, Susan took a hard fall in the bathroom at the oncology clinic. I had lifted her from her wheelchair and had her standing steadily while holding the grab bar when I turned a few steps away to throw something in the trash. I saw movement out of the corner of my eye and turned to see her falling backwards, landing hard on her bottom and knocking the back of her head on the wall just behind her. It was a moment of surreal, slow-motion helplessness for me and one of intense pain for her. She slumped to her right side and cried. The staff heard the impact from outside and came to help right away. While the nurses examined her, we thought it best to call paramedics out of concern for back or brain injury. The medics arrived within several minutes and did their best to move her onto a backboard and fit a neck brace without hurting her, but it was excruciating. Everything hurt.

She was transported around the block to the ER at Ronald Reagan UCLA Medical Center and admitted about 3pm for a CT scan and spinal x-rays. They gave her something really strong for pain that took away the “everything hurts” sensation and allowed Susan to rest a bit. Doctors said the CT scan showed no head trauma or bleeding and said the spinal x-rays were negative also, a great relief. When it became clear she couldn’t tolerate transferring or sitting for a car ride and that I might run into trouble attending her at home, she was admitted to the hospital around 2:30am for observation and pain management.

We learned over the next two days that Susan does have a compression fracture on L-1, her first lumbar vertebra. The orthopedic surgeon said it’s not severe (could have been worse); and ordered a spinal CT scan to check for bone fragments (there are none). She’ll need to wear a brace to restrict her movements when she’s not lying down. She also had a second spinal tap on Friday to drain fluid for hydrocephalus since she was going to need another one soon anyway, and began antibiotic treatment for a raging bladder infection we discovered prior to Wednesday’s chemotherapy. Too much fun for one girl.

After evaluating her condition with the medical team and physical therapists, we decided Susan needs to have rehabilitation in a skilled nursing facility before coming home. That’s a new area for me in decision-making, so our nurse-friend Brenda Carruth came through with some excellent referrals from the discharge planner at Long Beach Memorial. I checked them out on Saturday chose Alamitos Belmont Rehabilitation Hospital in Long Beach. Susan will be transferred there Monday for what may be a stay of several weeks to a month or more depending on her progress. They seem very focused on rehab, so I think it will be a good environment for her to heal and get stronger. Susan may lower average patient age by about 20 years when she arrives. They play bingo there.

When the medics were attending Susan in the bathroom on Wednesday, our oncology nurse Nikki told me pointedly her fall was not my fault. Her words lifted a burden from me. I thanked her. I had not caused her to fall, but I had not prevented it either. It happened so fast – and she fell hard, almost like someone pushed her. It was one of those “if only” moments you wish you could take back and do differently. Since Nikki is both observant and caring, she saw whatever expression I had on my face and took the burden from me. I decided to agree with her since beating myself up with guilt isn’t going to help anything. Susan has had a complicated illness, so we just have to deal with it. Once again, we have felt the vast support of our family, friends and church over these past days. We know God hears every prayer and will continue to meet every need. We always thank Him for his goodness and mercy.