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.

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.

A mild lapse, but improved again

Susan improved again after being burdened for a couple of weeks with greater fatigue and confusion most likely brought on by some combination of chemotherapy, a lower steroid dose, and a cold and cough.  Her blood counts returned to normal ranges the week following last month’s oncology visit, so she was cleared to have her 5th dose of CCNU on March 4.  She’s been understandably more tired, but again had no nausea or vomiting, thankfully.  Her next series of blood tests will determine whether she’ll have her 6th and final dose of this chemo. 
 

We visited UCLA again yesterday for an infectious disease follow-up with Dr Uslan, who tracks Susan’s progress from past complications like fungal meningitis and urinary tract infections and provides another set of eyes on her blood counts and liver function.  We were glad to have an uneventful exam and extend her next visit to six months from now. 

We celebrate Susan’s continued stability along with the gifts of life and our marriage as we approach our 25th anniversary on March 23rd.  In the months following Susan’s diagnosis in 2007, a generous and anonymous friend gave us a gift certificate for the Surf & Sand Hotel in Laguna Beach.  We were too consumed with crises to use it initially, but I thought of using it last March for an anniversary getaway since she was in pretty good shape.  I faced the brain tumor quandary – do we seize the day and get to Laguna while we can, or do I gamble on Susan living another year so we can celebrate our 25th in style?  With less than three months out from a life-threatening brain hemorrhage, would she have another?  Would tumor growth or infection or something else interrupt?  Would Susan yet become a GBM statistic for the 24-month average life span after diagnosis? 
 

I had our silver anniversary in mind, but I was trying to answer just another form of the original question – how long will Susan survive?  Since the answer is unknowable for us, I circled back to what we do know:  our lives are in God’s hands.  That resolved, I could go on faith that we’d get to our 25th together if it’s God’s will since he knows what’s best for us.  It felt good to have such a goal.  And it was strangely enjoyable to defy the beast of uncertainty made up of all the things that could go wrong over the next year.  It’s kind of like I was flipping GBM the bird even though I’m not the bird-flipping type.  Take that.
 

This whole brain tumor journey is stinking hard.  It’s hard emotionally, spiritually, physically, and financially.  It’s hard on Susan; it’s hard on me, on our kids, on our parents, on our family and friends.  I wish I could say I’m unwavering in my strength, but one day recently I became upset under the stress of getting errands and things done at home when I had to take time to help Susan.  Since I was obviously irritable, she apologized and said she’ll do anything she could to help.  My thought came immediately and shocked me:  “How about not getting a brain tumor?”  I held my tongue.  

A few months ago I concluded that with all of Susan’s deficits from vision to mobility to memory, I’m just glad to have her around.  I told myself if this is as good as it gets, it's okay.  We’re still together.  After 25 years of marriage and nearly three years in brain tumor world, her weaknesses have exposed my own.  Confronting my brokenness has been as hard as anything else we’ve been through.  I believe it’s one of the great human challenges under any circumstances.  I’m learning my strength will fail and even my resolve will waver.  But I’m learning to trust the one who loves us incredibly and whose promises are enduring:  

But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  2 Corinthians 12:9

Our 25th anniversary will be a special day for us.  We're grateful to belong to each other for so long and thankful for someone's caring gift so we can celebrate so nicely.  I’m so glad I met my Susan.

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.