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.

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.

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.

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!

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.