Steroid-induced diabetes

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

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

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

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

A three-year brain tumor survivor

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

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

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

NY Daily News 09/01/09: Glioblastoma

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

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

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

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

Stable tumor and a kidney stone

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

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

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

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

Kidney stones maybe and Peace definitely

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

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

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

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

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