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.

A spot to watch

After moving up Susan's scheduled two-month MRI by a week out of concern for what’s causing her increased confusion and fatigue, the scan yesterday revealed a new spot on her brain. It’s small, about 1 cm in size and does not appear to be growing quickly. It's located on the right frontal lobe near the ventricle (the original tumor site is on the left). It’s not necessarily new tumor growth and may not be what’s causing her symptoms. It’s neither great nor terrible news. It’s a spot to watch.

First appearing on her scan in August, it was too soon to conclude it was anything but a suspicious angle change compared to the scan in June. From scan to scan, the “slices” of digital images don’t match up perfectly with each other. Now we know the spot is definitely there and appears to have grown a couple of millimeters – not an alarming change. If it’s tumor tissue, there may be unseen tendrils growing; but there’s no way to know that right now. A biopsy would be premature and unnecessarily invasive. Likewise, chemotherapy at this point would be hasty given its side-effects.

She’ll return in five weeks for an MRI of her head and neck, as well as an F-DOPA PET scan. Susan had one previously in July 2009 as part of a diagnostic study requested by neurosurgeon Linda Liau. I’ll skip the five-syllable word that DOPA stands for – but a PET scan is another imaging tool that can lead to a quicker and more accurate diagnosis. We’re thankful to be associated with UCLA at times like this since they have one of only three such machines in the country.

Meanwhile, yesterday’s scans also showed the persistence of brain swelling that Dr Nghiemphu said is most likely radiation effect from 2007. The swelling hasn’t increased, but it’s still there and is most likely the root cause of headache and its related troubles. As a result, we decided it’s probably not possible for Susan to stop taking steroids altogether. We raised her Decadron dose from a taper to 1mg daily so it can be effective against swelling and relieve her from taking pain meds. We’ll see whether her recently increased confusion and fatigue may be relieved as well.

As I said, discovering a spot to watch is not good or bad news, but I admit to a heaviness that comes with interrupting the improvement Susan has enjoyed for most of the past two years. It’s a reminder that aggressive brain cancer is not presently curable with modern medicine and tends to grow over time. We cannot will it away; although God may, so we pray for healing.

As we viewed Susan's MRI yesterday, I noticed how visibly large her stroke area is in the left occipital (rear) lobe of her brain. It’s probably 2-3 inches both wide and long. The stroke occurred sometime between her seizure on July 3, 2007 and when she woke up after brain surgery on July 5^th. It caused the right-side visual field loss and right-side weakness that affect her today. Susan has been through so much. The brain images document her grueling battle with brain cancer – the stroke, the aneurism, the tumor cavity itself; and now the new spot to watch. Still, we trust God in all of it and desperately want to be obedient to him on this journey. The Apostle Peter writes to us in 1 Peter 1:2, “Grace and peace be yours in abundance.”  We’re thankful we’ve got loads of grace and peace. And we’ll take more.

A bit of a slip

Susan’s had a bit of a slip lately that’s caused enough concern for us to move her scheduled MRI up a week so we can know if she’s had any tumor growth. The past six weeks offered a time for her to finish her kidney stone treatment with smooth results and for me to focus on working as much as possible to try and shore up our finances.  When she began feeling more fatigued and confused a couple of weeks ago, her symptoms seemed to point to another urinary tract infection. We might expect as much after having her kidney stones laser-blasted. But last week’s labs came back negative for bacterial cultures and her symptoms continue, so we must return to the possibility of cancer growth. We know God has sustained us all along and we continue to trust him through uncertainty as we ask for healing. We are grateful for everyone’s prayers also.

We did arrive at an answer for her mysterious headaches last summer, settling on Vicodin “rebound effect,” a form of dependency from long-term use. We’d already dealt with “chasing the dragon,” as our drug dealer – er, pharmacist put it. That's when you need a greater dose of an opiate to get the same level of pain relief as before. I remember when half a glass of chardonnay on our anniversary would make her feel like having a nap, so when the severe pain of brain swelling came upon her in 2007, one Vicodin took care of it if Tylenol didn’t. Four years later, she’s needed two instead. Although her level is way below that of a serious abuser or addict, it’s still chasing the dragon. Evidently, Michael Jackson did this in the extreme.

With rebound effect, long term use of a drug like Vicodin results in a headache not because of a problem like brain swelling, but because she’s not taking Vicodin. For the past month or so, we’ve been in the process of unwinding it by substituting a skin patch coated with a drug called Fentanyl to provide a base level of pain relief. It’s relieved her of taking Vicodin constantly, while Tylenol or maybe one Vicodin now suffice for occasional breakthrough pain. Clearly, medical treatment is a complicated thing. The drugs that meet a need during crisis can become a drawback themselves, as we’ve seen with her steroids as well. I’m sure we’ll need to wean of Fentanyl next.

My mom asked this week whether Susan’s doctors have said anything lately about what might happen next with a patient like her. I said the last time I asked her neuro-oncologist was three years ago or so when Dr Nghiemphu said her prognosis was “guarded.” That’s an appropriate answer since she is neither in remission nor imminently dying. She’s guarded. What Mom really wanted was to ask the questions I had the day Susan was diagnosed: What will happen next? How long will she live? The answers are not answers, they’re just acknowledgements. We don’t know. We don’t know.

“We don’t know” is the stuff of a cancer journey because it’s uncertain by nature. Now to coping with it – God is our ever-present help. Our faith in him and in his good purposes for us actually needs uncertainty to grow and become meaningful. If uncertainty is the stuff of a cancer journey, trusting God through it is the stuff of faith. God’s Word is loaded with examples of people who’ve had to forge ahead when faced with monumental uncertainties, but Abraham comes to mind in particular.

After God had promised to make him into a great nation through his offspring years and years earlier, he found himself a childless old man with an old wife well past child-bearing age. When they finally brought a son into the world in miraculous timing, God asked Abraham to sacrifice the young Isaac on an altar in the wilderness. Talk about uncertainty! To obey would mean taking part in a barbaric act that seemed out of character for a God who esteems human life, and would eliminate the very means for Abraham to become a great nation. What about God’s promise? Yet in faith, Abraham raised a knife in obedience to slay his son. At the last moment, God called off the test. That very act of faithfulness in uncertainty transformed Abraham’s faith into righteousness. It cemented his place as the father not only of a nation but of the faithful.

The point is what we're experiencing is not new in human life; and we’re in good company.A fragile circumstance is an opportunity to yield to the One who is good, has good plans for us, and has a greater perspective than we can see. We don’t know what will happen with Susan, but we know we can trust God along our journey.

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?