Last dose of CCNU, and Susan's godly burden

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

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

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

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

Clearing infection, stable scan

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

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

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

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

More breathing room?

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

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

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

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

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

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