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?

No kidney stone left unturned

We’re thankful Susan's procedure to treat her kidney stones this week went smoothly. She had a ureteroscopy at UCLA that inserts a tube with a camera and a laser through the bladder and ureter into the kidney to break up the stones. With one measuring about ¾ of an inch, her stones were too big to pass and were at risk of causing a serious blockage. It was time to get after them. She handled the surgery and general anesthesia well and had no complications. Blasting away at the stones reduces visibility in there after a while, so she’ll need at least one more treatment. Meanwhile, Susan has a stent implanted temporarily so the bits can pass through. Who knew we’d get to learn so much about kidneys?

Pondering in pre-op. Plus a lovely fashion statement.

This was Susan's fourth procedure at the outpatient surgery center in Westwood, including a port catheter placement and a couple of bladder pacemaker surgeries. I think that makes us frequent flyers. At any rate, we know the pre-op and post-op routine, recognize the nurses now, and are glad to have such a great facility and staff to help us. We trust getting rid of the bacteria-laden stones will remove the source of her frequent infections and improve her health overall.

Meanwhile, Susan has been dealing with mysterious headache for most of the past four weeks and is growing weary of it. We’ve had her blood tested a couple of times in different ways and have ruled out infections like UTI or the signs of meningitis. We’ve had her endocrinologist chime in, who doesn't think it's a problem with her steroid taper. While it’s good to rule things out, we still don’t know why she’s having persistent pain and will need to wait until next week’s MRI and oncology visit. We’ll know soon (but not soon enough) whether she’s got brain swelling or more tumor growth, or perhaps another issue in play. 

As we navigate our brain tumor journey, we still pray all the time, hope for the best, and are ready for anything. We continue to find ourselves in the mystery of God's will. We’ve been working through the hardest thing we could imagine, yet we see God in it and trust his plans for us.

We always hope and are open to God’s healing however he may bring it, through his gift of medical science or by his hand alone. He’s done both for us already. Yet what of prayer? On one hand, we pray with authority and faith and expect his power to meet our need. On the other hand, we know we are sinful beings in a fallen world who practice our faith imperfectly. We know that suffering sometimes attends our lives for reasons we don't understand. We pray always, but sometimes I wonder how we should pray. I wonder why God sometimes heals and why he doesn't. Maybe we’ll understand more in the future. It doesn’t matter. We pray.

Susan and I are keen to know what God may be doing in and through us during this season. What purpose will he accomplish? We’re confident he has one and that it’s marvelous. How might he want us to grow? How might we know him and ourselves better? We’re still a work in progress. We thank God Susan's tumor has not shown any growth in two years, even though she has not been completely healed or restored. She was near death, but is still with us. God has brought her a long way and clearly has shown himself faithful to us in all things. As we learn to trust him more, I keep thinking perhaps he wants us to experience something with him on our journey that may even be more important than its outcome.

Four on the Fourth

We especially enjoyed celebrating the Independence Day holiday this year since it was four years to the day since Susan's emergency brain surgery. She was diagnosed with her brain tumor in late June 2007 and had been scheduled for a craniotomy two weeks later, but Susan's worsening pain and sluggishness found us driving to Long Beach Memorial on July 3rd. She had a seizure in the car on the way and had to be wheeled into ER. She was moved to ICU that night when her condition became more critical. She wouldn’t regain consciousness for another 36 hours. More brain scans followed the next day and led the neurosurgeon to recommend surgery right away. Friends and family left their July 4th parties and gathered in the hospital chapel to pray. The mood lightened when Dr. Javahery reported a successful surgery and that Susan was doing well.
 
July 5th brought Susan's new awakening into brain tumor world. She knew me, but initially didn’t remember we had kids and had to be introduced to the idea of them. She didn’t know what had happened and couldn’t understand it when I told her she’d had brain surgery. I’ll always remember death was near that morning. The best way to describe it is not that she almost died; but that death was near. She wondered who was asking her to give up her spirit. Stunned by her question, I wondered if I was going to watch my wife die in front of me. I’d already given her to the Lord for the good of his will, so I told Susan that if she needed to go, it was okay. We don’t know what sort of spiritual exchange took place as several silent minutes passed; but the threshold where she found herself slowly dissolved. Susan would live.
 
It was a memorable episode, another in what was becoming a string of extraordinary events. We pressed on into the fullness of brain tumor world – a second craniotomy; then radiation, chemotherapy, rehab, and complications that would dip us back into crisis mode again and again. There was more rehab, and more improvement. Crisis mode became chronic mode, which has become normal life. Recalling our low points makes the height of Susan's progress that much sweeter. She’s still doing about the best yet since this journey started. It feels good to refer to her as a four-year survivor of glioblastoma multiforme.
 
We enjoyed a long and relaxing Independence Day weekend at the family cabin, just the two of us. We remembered July 4th 2007 repeatedly and in prayer, giving thanks to God for how far he’s brought us. Susan had her first walk in the mountains in four years, if you don’t count ambling between car door and cabin door. We made it more than half way up our road and back, stopping frequently along the way so Susan could catch her breath while we observed our surroundings – this family’s cabin, that type of tree, the northern ridge concealing Big Bear. She was wiped out and needed a good nap when we got back; but our walk was a highlight of the weekend.
 

Lately I’ve heard the word “miracle” come up in chatting with people about Susan. “That’s a miracle” or “She’s a miracle,” they say. I wonder about that. I wonder what it would be like to wake up one morning and see my wife as she was in 2005, slender and blonde, scrambling off to the dental office in the SUV I now drive, before her breast and brain cancers. That would be a great miracle. But then I think about how I once came up with my own definition of a miracle after spending time in prayer. Ironically, I think it was in 2005. “A miracle is nothing more than God’s provision at the point of human need.” In that case, she’s a miracle. A great miracle.

1450 days and another stable MRI

We celebrated another stable MRI on Wednesday as Susan approaches her four-year anniversary since brain tumor diagnosis. Her scan is mostly unchanged from two months ago, except for a little contrast-enhanced area to the right of her original tumor site that Dr Nghiemphu is watching. This could be a cause for concern since MRI contrast lights up with tumor growth, but the difference between now and April is evidently due to a slightly different scan alignment that makes the new image appear to have changed. With this fact and Susan's continually improved condition, it feels right and welcome that the doctor pronounced Susan’s tumor stable once again.
 

It’s hard to believe it’s been four years – this week marks 1450 days since the CT scan that revealed a mass on Susan's brain and worse news than we could imagine. We’ve been living these days and not counting them; yet something about this brain tumor anniversary seems different. With more time comes more perspective. Our son Adam’s high school graduation last night (way to go, bud!) brought to mind that night in 2007 when our daughter Lexie wore her cap and gown. Susan had a killer headache amid all the festivities and grew nearly immobilized in pain at our big family dinner afterward at Polly’s Pies. Last night, about 1450 days later, Susan used her wheelchair so we could navigate foot traffic at the stadium, sat in a row with wheelchair access, and needed me to show her where to look for Adam. But she was there.  Last night she had no headache.
 

On Wednesday in the oncology clinic at UCLA, I realized it’s no longer a foreign place full of dying people and unfamiliar faces. It’s a healing place full of survivors and caring people. We greet the staff now with first names, smiles, and hugs. We joke around with Queen Elizabeth when we check in, tell Alex the urine sample is a gift for him because we care, and head downstairs to brag to the nurses in radiology about Susan's new power port. After the MRI, Marvelous Marva takes Susan’s vitals. Daisy greets us with warmly and with a blessing. Nanette does Susan's neurological exam before we rejoice with her and a doctor we now call Leia about another great MRI. Then we seek out Nikki to see how her baby boy is doing. Everyone’s happy that Susan looks so good and is getting around without her wheelchair. Nikki shakes her head in wonder that three years ago we needed to get Susan into a bed as soon as we showed up for her chemo infusion. Having a conversation with her was unthinkable. 1450 days brings great perspective.
 

Still our hearts are heavy to think of those we know who lost their battles with brain cancer these past four years. Larry, Jeff, two special women named Joanne; Hank in April, and Robert last week. We knew three of these from our church alone. Susan is still here. To ask why is to ask why she got brain cancer in the first place. We don’t know. It just happened. But she’s still here. She just is. We thank God each day for the gift of life. There’s no doubt life is easier now that she’s doing so much better, just like it’s harder when we’re in the thick of crisis. But Susan’s trust in God continues, as well as her desire to be with him in Heaven when the time comes. We are at rest in our faith and our hope of Heaven. Meanwhile, God is keeping us. We pray more together than we did 1450 days ago, we lean on God more, and we have less regard for the temporal things of this world. We believe God wants us both to be more ready for Heaven. We believe he wants that for lots of other people too.