Drug reaction interrupts chemotherapy

Susan has been dogged by a persistent drug reaction that began with a big eruption in August along with an ER visit and now shows up daily in a more mild form. We initially suspended one of the drugs she took in combination with chemo, and have since dropped two more pain management meds to ease her system. Still, each day she gets welts and red blotchy skin on her trunk and extremities. They’re painful and itchy, but are relieved with Benadryl and Zantac.

When she was due to have chemo again several weeks ago; Dr Nghiemphu said we should wait until the rash clears completely before proceeding, if at all. Unfortunately, the reaction persists, so she may have had her last dose of Temodar.

The fact that her initial reaction so closely followed her chemo dose in August made it clear that’s what caused it. That type of reaction is typical of long-term Temodar use when a person no longer tolerates it. But to have a chronic rash each day for this long suggests another cause that for now remains a mystery.

Most brain tumor patients pass away before long-term drug reactions have a chance to occur, so we’re thankful to have such a problem. God has sustained her life and continues to work out his purposes along the way. We’ll have Susan’s next MRI and oncology visit after Christmas. Of course, we hope for continued tumor stability, and will discuss our options to resolve the mysterious rash.

Meanwhile, Susan continues her journey in remarkable fashion with the help of loving friends and family who care for her. She enjoys daily walks, still needs to rest a lot, and thankfully takes initiative to do things for herself as much as she can.

She’s constantly joyful. Joy is her natural bent, her first response, and no doubt a big reason for her survival. She’s incurably positive. Optimism and hope run deep in Susan, keeping her strong and stable. She’s spiritually enthused. She maintains a readiness to encounter God at any time; so spiritual songs and topics easily move her soul. She likes to close her eyes and drink in what’s happening around her, enjoying music or a sermon. And sometimes she’s just sleeping.

She’s also constantly playful, which probably wouldn’t happen without her joy, optimism, and fine-tuned spirit. But she loves to play at any moment – and her messing around with the kids and I are a sure sign she’s feeling well. Each of us has our lively routines we do with her. Most of them are precious and personal, and they help us stay connected. Here’s one I’ll share: lately she’s been fond of gripping my hand tightly when I help her sit down, then not letting go. She has quite a grip, but not one that can last when I tickle her with my free hand.

One night recently as I helped her into her recliner, Susan doubled over in pain, moaning loudly. She was obviously distressed and couldn’t talk or respond when I asked her what’s wrong. She continued as I asked her what happened, what was hurting. I couldn’t imagine what had happened so suddenly, so my mind was racing to figure it out. Just as my internal emergency alert system was fully engaged, she lifted her face from her hands and said “A-boo!” with a huge smile. She nailed me. She got 500 points for her acting, 500 for her timing, and a 250-point opportunity bonus.

Feeling fine

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

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

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

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

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

Next steps

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

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

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

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

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

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

Resting at home

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

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

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!

More breathing room?

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

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

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

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

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

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

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.

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.