PET scan shows tumor growth

We learned from Susan’s recent PET scan there seems to be a little more tumor on the right frontal lobe compared to a similar scan two years ago. Her neuro-oncologist has been watching this newer tumor area for a while and now is inclined to start treatment, probably chemotherapy. Since she’s scheduled for another MRI in ten days, we’ll look for any changes next to the scan from early October and decide on a game plan. Dr Nghiemphu floated the idea of Susan going back on Temodar, the first chemo she had in 2007. It was initially effective back then; and she tolerated it well.

Knowing tumor progression tends to be a matter of time with GBM, I asked the doctor a couple of years ago when Susan was doing well what treatments remain for her if and when it begins growing again. She said there are several other chemotherapies available, including one or two she has in mind that might work for Susan’s cell types. It’s comforting to know there are more tools in the bag. However, additional surgery and radiation are apparently out of the question on the right side for Susan since she’s already had them on the left. If the right side of her brain has been compensating for trauma on the left by doing more work, we can’t risk her losing function under the strain of such focused treatment. But she may be eligible for experimental, targeted therapy like a clinical trial vaccine if needed. We’ll see how it goes. Meanwhile, Susan feels well and has improved over the past month, perhaps from a slightly higher dose of the steroid Decadron.

We’re not prone to panic or despair; but this is the first such reversal Susan’s had in over two years, so it’s unnerving. Naturally, I want to answers for unanswerable questions, like what will happen next? And how long will Susan live? It helps to know they’re unanswerable so I can move on. Instead, we turn again to God who loves us, who made us, who has good plans for us, and who knows the number of our days. We turn to his ample supply of grace and peace, resources that have become more real and satisfying than we could have imagined. We also turn to his word, again and again, like where our friend Peter tells us:

In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith — of greater worth than gold, which perishes even though refined by fire — may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. 1 Peter 1:6-9

What if there’s purpose to our trials and a future brightness from them that blindingly outshines their present gloom? The thought is liberating and life-giving. It’s even exciting. I believe it’s why Susan is so looking forward to Heaven; but it has great implications for the rest of our lives on earth. As we trust God and pray for Susan’s healing, we also thank him for his gift of hope. I think it must be some of the most powerful stuff there is.

Another PET scan

We went to UCLA today for Susan’s DOPA PET scan so we can know more about the spot we’re watching on her right frontal lobe. She was injected with IV fluid, waited a few minutes for the stuff to get through her bloodstream, and went into the CT scanner for about a half-hour’s worth of pictures. The IV fluid was radioactive, so we won’t need to turn on the nightlight this evening. My wife has a lovely glow about her.

She had a DOPA PET scan about two years ago, and was fortunate to get on the machine this week – the first the first since it’s been operating again following a five-month repair. We’re so glad to have this technology available as a way to get a diagnosis without a surgical biopsy. 

As I filled out her intake form for the folks in the nuclear medicine department, I had to refer back to Susan’s health history page I created when I could no longer reliably recall all of the procedures she’s had in recent years. To abbreviate, she’s had breast cancer, brain cancer, twelve surgeries, four other hospital stays, seven admissions through ER, radiation therapy and three rounds of chemotherapy. It’s kind of a stunning list and would be hard to believe if I hadn’t been with her to experience it. But what’s even more amazing is the peace God has given us along the way and the peace that rests with us in our circumstances. It's a full-time, no-matter-what peace. A life-giving peace. While we haven’t been able to control cancer, cancer hasn’t been able to control us, crush us, or defeat us. The supreme, supernatural victory God gives us means it never will. That’s why we’re grateful.

Tumor stability: two years

We are grateful for another good MRI this week with no change in Susan's brain tumor and no increase in swelling. Tumor growth is the big issue with GBM, so we truly thank God for over 14 stable scans since her last growth in 2009. Her persistent headache for the past six weeks had us and Dr Nghiemphu concerned we’d see a different result on Wednesday, but we were able to dismiss that notion and focus on what may be causing Susan's pain. 

The answer on pain eludes us for now and leaves her hurting, weary, and frustrated. The scan shows a change in the dura layer which can occur with leaking spinal fluid and would definitely cause headache. Her shunt could have a small leak; or one of last year’s procedures might have caused one. But since Susan doesn’t have the pain typical of a spinal fluid leak, it seems unlikely. We decided to treat her pain for now with a medicated patch that hopefully will provide relief. Susan's ability to handle long-term discomfort with an upbeat outlook continues to amaze me, and makes me glad for the strong woman she is.

Pastor Larry asked for our perspective on peace for a recent sermon. Here are my thoughts:

How to describe the peace of God? Like love, joy, and hope, peace is one of our resources in Christ that is an attribute of God himself. It’s amazing that God shares his traits as ongoing gifts to us. Peace is part of his very nature:  “The God of peace be with you all.” (Rom 15:33)  And like God himself, his traits are as real as they are mysterious. You can’t see peace or touch it, but you can feel it and know when you have it. You can’t buy it, but you can receive it just the same. You can’t get more than you need and you won’t need more than you have, but you can give away all you want and still have enough.

Truly, God’s peace has attended us since the very beginning of Susan’s brain tumor journey in 2007. In spite of Susan being near death only days after we discovered her brain mass, the trauma never overwhelmed us. God’s presence gave us confidence that even if the worst should happen, we’ll be okay. In hindsight, we see how he laid the ground work months earlier when we happened to be taking Psalm 23 to heart. Verse 5 is a powerful image: “You prepare a table before me in the presence of my enemies.”

I picture a table set with silver, china, and crystal on a white linen cloth – in the middle of a battlefield. The enemies I fear are there; and there’s every reason I should fear them. But wait – whoever wants to annihilate me has been forced into a cosmic time-out. Whoa. There’s a greater power at work here. And not only does God show up and make it very clear who’s in charge, he wants to have lunch! Obviously God isn’t worried, so why should I be? In all that Susan's been through, God has brought peace to us in this way by helping us recognize our confidence in him.

The truth of another scripture also comes to mind. In Jesus’ farewell speech he said, “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” (John 14:27)  Worldly peace comes on its terms and with conditions. To get it, we must exert ourselves, change our circumstances; improve our lot. Even if that’s possible, there’s always more trouble on the horizon, so such peace never lasts. 

But God tells us the circumstances don’t matter to him. He takes our eyes off of our situation so we see only him. He meets us there to console and encourage us, to give us peace. Looking back at the situation, nothing may have changed but our perspective. Okay, so there’s the crisis we can’t fix. It’s big. But we know the Living God is with us. His resources exceed our needs. How will it work out? We don’t know – but God does. We just know he can handle it, so we’re going to keep following him.

Although Susan's brain tumor has been stable for two years, it contains aggressive cancer cells. Glioblastoma has no medical cure. She’s outlived most of our brain tumor buddies already, so we’re quite aware of our circumstances. When we think about it that way, it’s easy for fear to take hold. But that’s just another enemy, so God comes near again to remind us our lives our in his hands. We know he loves us, has a plan for our lives, and has a home waiting for us in heaven. This is absolutely what has been sustaining us on our journey. What would we do without God and his peace?

Continued tumor stability and more steroid adjustments

We are giving thanks once again for another good MRI on Wednesday showing continued tumor stability. Is this God hearing and answering prayers? Is it effective CCNU chemotherapy twelve months ago? Is it great results from ongoing therapies with chiropractor Jim Augustine? Is it Susan’s dual Grade III & Grade IV cell types responding well to what we’ve thrown at them? The answer is yes in general – and God is keeping us overall. We’re just thankful.
 

As we reviewed Susan’s recent steroid withdrawal with Dr Nghiemphu, she cautioned us that Susan’s natural production of cortisol probably will not resume, so replacement steroids may be a permanent remedy. I didn’t know this was a possibility, but I guess it makes sense after 3-4 years on the drug. While we haven’t ruled out another attempt to taper off, for now we’re shifting from Decadron to Prednisone since it’s milder and has fewer side effects.
 

Susan faithfully mugs for me at Junior's Deli before we nosh.

We also discussed Susan’s painful and swollen lower legs that came on with the last taper and the possibility of a blood clot in her right leg – she’ll have a Doppler ultrasound scan tomorrow. We left Westwood with a lunch stop at Junior’s Deli and were greeted by owner Marvin Saul when he checked in to make sure our meal was okay. It was. He’s a nice man.

Like I said, we’re thankful. Nothing’s changed medically speaking about Susan’s brain cancer being incurable or the expectation it will progress again someday; but with each two-month span that passes with stable MRIs, we have more time for Susan to get physically & mentally stronger and for us to enjoy the gift of life together. If she were cured tomorrow and we resumed our former lives to accumulate anniversaries and silver hair, we’d be living with a greater sense of God’s presence and the awareness that earthly life is temporary and Heaven is our home. We’re doing that anyway.

Our happiness

Susan’s status is thankfully unchanged, if not slightly better as she’s doing well weaning off steroids. We’ll be back at UCLA next week for another MRI and clinic visit.

Given Susan’s brain cancer, a number of friends from church who died this year, and several more dear friends who are fighting for their lives against cancer and other disease, we approach Christmas with a deeper appreciation for what that manger held two thousand years ago.

But first, I’ll not call it a manger – that word brings to mind the safe image found in songs and sketches. It was a feed trough for livestock. Picture a crude wooden bin holding grain or hay, stained with the slobber of cows or donkeys or sheep. Maybe one of the animals had chewed away its edges. Maybe some hairs from a cow's neck were wedged in a splintered front board and drizzled with muddy spittle. You get the idea. As much as we love lighted nativity displays, the Creator of the universe slept in the type of feed trough found next to puddles of urine and piles of manure. In our day, “manger” sounds too clean.

The distance the Son of God traveled to become our Savior is important to grasp for people going through hard times. It shows that God enters impossibly into messy and hopeless places and will deliver us. Paul’s eloquence on the incarnation in Philippians 2:5-8 is astounding:

In your relationships with one another, have the same mindset as Christ Jesus: Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death — even death on a cross!

First Jesus made himself nothing. Then he humbled himself. He came down all the way then came down even more. Who is this God, anyway? How much must he love us that a member of the Trinity would leave the glory of heaven to enter our world? And what does it say about him that he avoided the splendor that should attend the arrival of the King of Kings, chose the most helpless form of human existence, and was  placed a feed trough in an obscure Judean town?

That feed trough contained more than a baby – it contained love. Somehow, it contained the very source of love. The fact that God is all-powerful would be a terrible thing if he did not love us. We should fear his power and treasure his love. His power did for us what we could not do for ourselves in securing our salvation and eternal life, but his love made that power work on our behalf.

Love always has an object, a focus, what the lover can’t get out of his mind. For God, it’s us. Shall I summarize the Bible, the world’s best selling book of all time? The Bible is 1189 chapters contained in 66 books written by 40 men as they were inspired by God over a period of 1600 years. But we can pack over 773,000 words into just five: God is crazy about us. He’ll give us anything for our good because he loves us. His greatest gift to us was Jesus in that feed trough.

Love is costly. God’s love is unrestrained – he has paid dearly. Could we measure the cost of his creation, the cost of his disappointment at the fall of man, the cost of his incarnation, or the cost of his death and resurrection? It’s unimaginable. We can’t understand the extent of what God did for us, or why, but the heart of his plan was laid in that feed trough. Making himself nothing and then humbling himself means the One who spoke the world into existence would actually reduce his language for a time to coos and cries. The depth of God’s love for us means it’s okay with him if we don’t understand or appreciate its cost.

Love brings life. People who are loved become energized, brightened, and confident. Infants deprived of love become poorly developed. With love we live; without love, we die. Life came into the world and was placed in that feed trough, a new life born to Mary and Joseph, and eternal life for us through Jesus’ work on the cross. This life, this love, inspired the hymn writer to pen “Strength for today and bright hope for tomorrow, blessings all mine with ten thousand beside” (Great is Thy Faithfulness). This life and love are why we and others enduring hard times appreciate the meaning of Christmas.

It sounds weird to say, but these hardest days of our lives have also been our happiest. With Susan’s breast and brain cancers, we’ve experienced loss and turmoil – the stuff that comes with major crisis and upheaval. But we’re loved, and we’re learning good things about the God who loves us. Instead of despair, we’ve received joy, hope and peace. We have life with each other now and eternal life with God in heaven later. It’s such a gift. It’s all because of what was in that feed trough. Merry Christmas!

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.

Easy trip from pre-op to post-op

After deciding Susan would not have the Inter-stim bladder pacemaker implanted for good, there was still the matter of the electrodes placed in August in her low back – foreign objects now with no useful purpose. The outpatient procedure on Wednesday at UCLA to have them removed went smoothly and made us grateful to put the issue behind us. After checking in at 7:30am, Susan got to pre-op about 8:00, went into surgery at 8:30, and was in recovery in less than an hour. By the time I saw her a bit before 10:00, she was able to wake up and start shaking off the anesthesia. I was impressed with her chipper mood and the quick progress she made without complications or much pain. We left by 11:00, had a bite to eat, and zipped home. She was a bit tired that afternoon, but only slightly more than normal, and has been feeling well since.

This procedure going smoothly is more evidence of how well Susan is doing these days. She has frequent episodes of headache and fatigue and needs several hours of rest, but she usually revives later or by the next morning. She’s stable. There’s been no great improvement, but no nasty complications either for a number of months. We’re thankful. We sense God’s hand holding and guiding us, and we’re aware of the continual prayers people lift up on our behalf. God is keeping us – and we’re doing well.

When I was filling out Susan’s pre-op forms and came to the section about religious and other preferences, there was a question about preferred communication style. I recall the choices were “verbal,” “written,” “demonstrated,” and “other.” I overcame my brief urge to check “other” and write in “puppet show.” But I love the thought of it.

Later, when we went to the Plaza Deli for our meal, Susan’s turkey sandwich order came up before my chicken Caesar salad. During several minutes of waiting, I gathered up utensils, napkins, and drink refills. Susan wondered where my Caesar salad was. I said, “They’re looking for an emperor, but they’re awfully hard to find these days. They keep getting murdered. It’s the senators – and the hemlock.”

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.

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.

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.