Chemo again

Susan started chemotherapy last week after Wednesday’s MRI showed her brain tumor has grown compared to earlier scans. The good news is it doesn’t appear to be growing quickly – viewing the current scan next to one several months ago shows only a slight difference. But the growth is clear when comparing this MRI to last year's, or this month’s PET scan to the one in 2009. To my untrained eye, the tumor area looks to be 15-20% bigger than before. It’s also clear especially on the PET scan that the “new growth” in her right hemisphere is not new and separate tumor tissue, but an integrated part of the mass.

Dr Nghiemphu recommended Susan start another round of chemotherapy now, not because it’s urgent, but because there’s tumor growth that needs to be treated. She’s also been paying attention to Susan's symptoms, not relying on visual evidence alone. She relates Susan's headaches last summer and cognitive lapse this fall to tumor growth. After discussing Susan's treatment options with us, we agreed with her recommendation to start monthly infusions of Carboplatin. Starting right away gives her time to bounce back before Thanksgiving and get December’s treatment done before the holidays.

We returned Thursday for chemo and got reacquainted with UCLA’s infusion center for the first time in about two years. Nurse Nikki fit us in to the schedule and gave us the run-down on Carboplatin. She calls it good, old-fashioned chemo. I’m thinking “hand crafted by local artisans in small batches for cancer patients with discriminating taste.” Actually, taste has something to do with it – one side effect is a metallic taste in the mouth since it’s a by-product of platinum. The drug has been in use since the 1980s for ovarian, lung, and head & neck cancers. Other effects include nausea & vomiting, slight hair loss, and neuropathy. It’s expressed through the kidneys, so Susan has two 32-ounce water bottles to drink each day to get rid of the toxins.

So far, she’s doing okay. She needs more rest than usual, but has been feeling well otherwise. We’ll be getting labs every two weeks to check for low white cell counts and kidney & liver function. Since chemo effects are cumulative, any problems are more likely to appear in future months.

As normal as life has gotten for us these past couple of years, the realities of brain tumor world still proclaim their presence, and not merely in Susan's latest tumor growth. There were just a few of us in the oncology waiting room at UCLA late Wednesday after we’d returned from Susan's MRI and were waiting to see the doctor and view her scan. I noticed two other couples, brain tumor patients and their caregiver spouses like Susan and me. After a few minutes, a nurse called one patient to the back for his infusion. A man who had looked pretty normal just sitting there struggled to rise after his wife stood up, then hobbled toward the infusion center with horribly spastic movements. That poor man, I thought. Look what brain cancer has done to him.

Moments later, my attention turned to the couple in front of us, a wheelchair-bound woman and the man attending her who appeared to be about 40 years old. She looked much older and had trouble speaking as he asked her if she wanted some water. Several times. He struggled to understand her and stepped away to refill her water bottle. She sipped from its straw when he returned, then labored to get his attention again. “Do you want to go to the bathroom?” he asked. Her reply pained me as she waived her arm up and down – “Gaaah.” He wheeled her toward us before turning down the hall. I saw the eyes of a 40-ish woman, evidently his wife, who appears fifteen or twenty years older. That poor woman. That poor couple. Look what brain cancer has done to them.

This Thanksgiving I’m thankful for Susan and for her remarkable progress over these four years. I’m thankful for her, her playfulness, her positive attitude, and her beautiful faith. We’re thankful to God for his presence, his love and faithfulness, and his gift of life. We’re thankful for our kids, each of whom is discovering their identity in Christ and learning to trust him more. We’re thankful to family and friends who pray and who stand with us to help in immeasurable ways. God has given us grateful hearts and the perspective to see our lives through eyes of grace, which helps us deal with our hardship. We’re thankful.

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.

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?

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.

Best ever

Susan is doing about the best ever since her brain tumor was diagnosed. With well over 18 months since her last tumor progression, she’s continually stronger, more energetic and alert. When my brother Jon was in town from Colorado recently, he looked across the dinner table and pronounced he was looking at the normal Susan again. Yesterday at UCLA for labs and a CT scan to check her kidney stones, several oncology nurses who treated Susan during her worst days of 2008 were astounded to see her in clinic talkative and getting around without a wheelchair. Just as when her symptoms have worsened making it hard to pinpoint an exact cause, I can’t say exactly why she’s doing so well, aside from the obvious lack of tumor growth. I suspect Dr Jim’s alternative chiropractic treatments have been effective. Also, her endocrinologist’s recent prescription for L-Thyroxine seems to have revved up her slumping thyroid gland and boosted her metabolism. What matters is that she’s doing so well.

Yesterday after lunch at home, Susan sat in her automatic recliner holding its two-button remote control and asked how to turn the TV to channel 4. I’m used to greeting her requests with some suspicion since she so regularly gets muddled in words, thoughts and actions. She clearly was confusing the recliner and TV remotes and probably wanted to get up to use the restroom. But she looked at the clock that read 12:45 and said she really did want to watch channel 4. I checked the guide and was astounded myself – there were 15 minutes left on “Days of Our Lives.”

People experienced with brain trauma will appreciate what a big deal this was – Susan correctly read the clock, was aware of the time of day, remembered the program that came on during that hour, and knew what channel she needed to find it. It’s easy to take for granted this level of alertness and decision-making until it’s denied. It’s a mighty contrast to the mental malaise that’s dogged her so much of the past four years. So there I was, dumbfounded, welcoming such a normal act and greatly amused that really I don’t know every detail of Susan’s life. When did she start watching “Days” again? (She used to record it on our newlywed VCR and FFWD through the tape after work. She’d discuss its plot lines with another soap opera addict – er, fan in my life, my then 80-something grandmother. Susan even taught Grandma to program her own VCR so she could tape the show and maintain the busy life of an octogenarian.) Susan is back and is not to be trifled with.

This weekend brings to mind those four years ago on Memorial Day weekend when we saw the grip of Susan's brain tumor becoming stronger while we were yet unaware. We’d stopped for steering-wheel sized pancakes at the Guasti Café in Ontario along the way to Angelus Oaks. The joy of indulging our kids in an absurdly big breakfast was disrupted by mom’s intense headache that required her to cradle her forehead in her hands a few minutes after swallowing naproxen. Later at the cabin as I greeted our neighbor Barbara Gebb on the road, I explained Susan couldn’t come out and say hello since she wasn’t feeling well, had a headache and had been vomiting. I would recall that conversation with Barbara a year later, wishing I’d known what was wrong. Her darkening progression through June 2007 led to inconclusive doctor visits, more naproxen, writhing pain, an ER, and an ominous CT scan. The upheaval had begun.

Our perspective is so different now. Susan went from fair health to near death to vast improvement. We’ve seen a deadly disease overtake our lives in crisis and slowly migrate to manageable, chronic treatment. We’ve seen five friends die from brain tumors, three we knew from church and two we met through our brain tumor community. We've seen Hank Zavaleta pass away only last month and leave us inspired by his Godly faith, courage, and selflessness during his remarkable eight-year journey. We’ve seen our doctors give their best professionally while caring personally. We’ve seen friends and family give a sum of hours and dollars to sustain us that’s beyond counting.

More than anything, we have witnessed God’s faithfulness and the unfolding of his good purposes even in the hardest times. But why should we trust God when we don’t understand? How can we have peace when we’ve clearly lost any supposed guarantee that life would be smooth sailing? We trust him and have peace because we’ve learned more of God’s true nature than we knew before. We look back and can see him attending to our every need. We look around and are surrounded by his love and strengthened with his hope. We look ahead and take hold of his promises amid the working of his sovereign will as it plays out during our time on earth. This Memorial Day we remember how this journey started and how we’ve been carried through it. We will continue to see and speak of his mercies.

God's foolish weakness and why we're not scared

The cross is a prominent image for Christians. Like the Star of David for Jews and the crescent moon for Muslims, it’s the symbol that identifies the faith. But during Holy Week, the cross looms larger, as it should. It still lingers in mind for me the week after Easter. The crosses we commonly see are ornamental, works of art or fine jewelry, so it’s hard to imagine what seeing a cross meant to a person in the Roman Empire during the 1st Century. Like the guillotine or the hangman’s noose, the cross was a tool of death by execution. If you were an ancient Roman who emerged from a wormhole into our world, wouldn’t it be a bit odd to see a cross adorning the reverent space of a church? Wouldn’t it be like seeing an altar with an electric chair or a bloody machete? It just seems a little weird.

How Jesus died is incredible – by crucifixion, easily the cruelest form of torture and death ever devised. Being nailed to a cross was a more painful and agonizing death than the tied-on method, but that’s just the physical suffering. Jesus’ spiritual suffering was more heartbreaking than we could know. There’s a glimpse of both in David’s prophetic Psalm 22, written generations earlier. You should read it.

Why Jesus died means everything. God’s holiness means there had to be a penalty paid for our sin, but his love means he would visit the sentence on his son instead of on us. Heaven’s bargain was conceived while we knew nothing about it: Jesus would take God’s wrath and pay with his life, while we would be spared that wrath and receive eternal life. Paul summarizes it perfectly, “God made him who had no sin to be sin for us, so that in him we might become the righteousness of God.” 2 Cor 5:21.

Each time I acknowledge my sin and realize I ought to die for my offense, the cross is there to declare, “No, it’s okay, you’re forgiven. The price has been paid.” Done deal – I can move on again. The cross makes sense. It was God’s tool to restore to his children the righteousness we forfeited in the garden. The cross deserves to be above the altar.

I am struck by Paul’s comments that “the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God.” (1 Cor 1:18)  As in his day, a cross can be a horrifying symbol of execution, an absurd religious object, or worse – an irrelevant logo. Paul continues on the message of the cross:

It's written, “I'll turn conventional wisdom on its head, I'll expose so-called experts as crackpots.”

So where can you find someone truly wise, truly educated, truly intelligent in this day and age? Hasn't God exposed it all as pretentious nonsense? Since the world in all its fancy wisdom never had a clue when it came to knowing God, God in his wisdom took delight in using what the world considered dumb – preaching, of all things! – to bring those who trust him into the way of salvation.

While Jews clamor for miraculous demonstrations and Greeks go in for philosophical wisdom, we go right on proclaiming Christ, the Crucified. Jews treat this like an anti-miracle – and Greeks pass it off as absurd. But to us who are personally called by God himself – both Jews and Greeks – Christ is God's ultimate miracle and wisdom all wrapped up in one. Human wisdom is so tinny, so impotent, next to the seeming absurdity of God. Human strength can't begin to compete with God's "weakness." 1 Cor 1:19-25 The Message

Nearly four years after Susan was found to have terminal brain cancer, we still “pray all the time, hope for the best, and are ready for anything.” Why? It’s the cross. We know that we’re saved, why we’re saved, and who saved us. Not only that, we’re brimming with anticipation about what he saved us for.

Think about the span of time between when Jesus was laid in the tomb and when he walked out of it. Pretend you don’t know about the resurrection. In that moment, Jesus is a failure and God is a joke. The people who believe in him are fools. But we have the gift of knowing that tomb is empty. If God can work his ultimate miracle out of the failure, tragedy, and death brought by the cross, I’d say we’re right where we need to be. Hope is marvelous.

Power Port

Yesterday’s surgery went really well for Susan. Three years after becoming the proud owner of a BardPort® Plastic Single Lumen Percutaneous Introducer System, she is now the proud owner of an Xcela® Power Injectable Port. Woo-hoo! The only thing she wanted more than the BardPort was the Xcela. And all this time I thought she liked diamonds.

Actually, the port catheter has been a godsend because it provides a ready vein for drawing blood samples and administering IV meds or fluids. Located under her collar bone and tapping a vein close to the heart, there’s more immediate access to the bloodstream than with a peripheral vein in the arm. Unlike a similar catheter called a PICC line, the port catheter is enclosed under the skin so there’s no site maintenance and less infection risk. But with the power port instead of the regular port, she won’t need a separate IV to inject contrast solution for MRI and CT scans. After 45 minutes trying to find a vein in her arm to start an IV, the pre-op nurses easily agreed the power port is a good idea for her.

A lovely post-op smile.

Being with Susan for another procedure yesterday, I’m more proud of my wife than ever for how well she handles pain and inconvenience. She woke up early, couldn’t eat or drink anything, waited in traffic to Westwood, got admitted to the hospital, waited some more, got stuck with needles, waited again, and was wheeled into surgery. Afterward, she had to lay flat for two hours while enjoying an afternoon breakfast of water and graham crackers. Susan gets stuck and injected more times in a year than most people will in a lifetime. She has blood drawn twice daily to check blood sugar. She swallows foul-tasting pills several times each day. Hospital gowns have become her stand-by wardrobe. Sometimes she gets weary of it all, but she doesn’t break down. Sometimes she cries out when she’s tired or in pain, but she’s not a complainer. To her, today is better than yesterday and tomorrow will be better yet. Susan is beautiful. Her strength inspires me.

Here are a couple of one-liners from yesterday. 

• A compassionate nurse was feeling bad for Susan during her ordeal to find a vein for the IV. She wished she could take the pain for her, and assured her that I would too if I could. I said, “I’d be glad to take some of it. I made through childbirth three times without anesthesia.” 
• We heard an obviously distressed child screaming loudly from a room nearby while the nurses worked on Susan. It went on for several minutes until she wondered with concern what was wrong with him. I said, “They just handed him his hospital bill.”

We thank God for the new power port and for answering prayer in bringing Susan through surgery without complications. We’re glad she’s doing well.

A Message from Cris Zavaleta

Dear Family and Friends,
Thank you so much for your emails, cards, flowers and hugs. We are truly a blessed family to have all of you here for us. Our journey together has been long and Hank fought hard to stay as long as he could with us all. I truly miss him so very much. The girls and I are doing OK. We are keeping busy with all the fundraiser stuff.
I hope that you can all come and support this great cause of Brain Cancer Research just like you always have. Legends night is Thursday the 28th 5-9pm, the 5K is May 7th at 9am. Hope to see you all there. Check our web site for info: www.craniumcrusaders.org
Also, Hank's memorial service is scheduled for May 14th at 11am at Seacoast Grace Church - 5100 Cerritos Ave - Cypress, Ca. There will be a reception following the service at the church.
 
Again, Thanks for all your love,
Cris, Noelle and Jessica

Stable MRI, a Brain Tumor Conference, and a Power Port

We’re thankful Susan’s scheduled MRI last week once again showed no evidence of tumor growth. With about 18 months since her last tumor progression, she’s had a long respite that’s allowed us to tackle the lesser issues as they come along, like another recent urinary tract infection. I would have been surprised to have bad news on this MRI since Susan has been feeling better lately and doesn’t have the symptoms that would signal something’s wrong. She’ll return for her next MRI and oncology visit in June.

The weekend before Easter, we enjoyed spending time with the UCLA neuro-oncology team once again at their annual brain tumor conference. On Friday I went on my own to the lectures that have more of an academic flavor and offer tons of great info from every specialty area relating to brain tumors – oncology, pathology, radiology, surgery, radiation oncology, chemotherapy, and so on. Since a new patient or caregiver has so much to learn when entering brain tumor world, an event like this can really fill in the knowledge gaps and provide a better foundation for fighting the disease. With my third time attending, I found my knowledge base pretty well intact and didn’t need to hang on every word like before. My big take-away once again is that there are unique differences among patients with brain tumors even of the same type, researchers are learning more about them, and this knowledge will surely translate into better treatment options. Researchers like those at UCLA are gifted and relentless, so I'm confident the “cure” for cancer will be found in these individualized treatments.

On day two, Susan, Lexie and I attended some of the interactive workshops and had an opportunity to participate in a panel called “Understanding the Family Experience.” When it was our turn to share, I summarized Susan’s story and treatment history and shared that it was important for us to accept the situation early on and trust the Lord with the outcome, while praying and pursuing every avenue of healing – in fact, our hope in God is the very strength that has gotten us through. I also thanked fellow panelists Steve and Shawna (she’s also a 3-4 year survivor) for their suggestion at the 2008 conference that prompted me to start our kids with some trauma counseling. In our case it was more prevention than remedy, but it put me at ease that our kids were doing well.

Susan and I were proud of Lexie, who shared bravely on the panel about her experience and showed her maturity in handling what still is a hard situation. She spoke about the difficulty and loneliness she felt when Susan was first diagnosed and told of some of the adjustments she had to make as a college freshman immersed in a life-threatening family crisis. It was a privilege for us to share our story and comfort other brain buddies with the comfort we’ve received. Also it was good to see Lexie become reassured from being with other brain tumor patients and their families and meet some of the UCLA team who cares so well for her mom. The conference displays the best of the human spirit as patients courageously navigate their brain tumor journeys, caregivers offer aid and support alongside them, and doctors offer care and wisdom as they do their best to get everyone through it.

Tomorrow, Susan will have outpatient surgery to have her port-catheter replaced. It’s served her well for three years and otherwise could stay put for blood draws and most IVs, but it can’t handle the thick contrast solution she needs with every MRI without risk of getting clogged. She’s endured countless (because I haven’t counted them) needle sticks on her left arm that’s now loaded with scar tissue. As great as the radiology nurses are at finding veins, Susan is running out of targets. She’ll be getting a power port that can handle not just the thick contrast solution for MRIs, but also the thicker stuff for CT scans if need be. There’s some risk with any surgery, but we’ve decided since she’s feeling stronger now and will need more MRIs, this is the time to do it. As always, we thank God for keeping us and thank all who pray for and support us.

Hank Zavaleta

We learned with great sadness that Hank passed away this afternoon. We thank God for the special man he was and how he made a difference in this life as a follower of Christ, a family man, a firefighter, and a courageous brain cancer survivor for eight years. As we celebrate that he’s at home with the Lord now, we offer our sympathy and prayers for Cris and their daughters Noelle and Jessica.

Hank Zavaleta update

Here's an update from Hank's wife, Cris. Thanks for continuing to keep them in prayer.

Hi,
So sorry I haven't written sooner, the days just seem to go by and then its a new day. Hank is doing OK, he is mostly sleeping but he can hear you and sometimes he opens his eyes. He seems to remember people and sometimes you'll get a little crooked smile out of him. He's not eating much any more and we try to keep him comfortable with medication. Visiting is still OK between the hours of 11am-6pm, no need to call. Thanks again for all your continued support,
Love
Team Zavaleta

Praying for Hank & Cris Zavaleta and family

Thanks for continuing to pray for Hank Zavaleta and family as he’s on hospice care. Cris posted on CarePages recently to say thanks “for all the kind emails, cards, flowers and food. We are truly blessed to have such wonderful family and friends.” She suggests friends who want to see Hank should do so at this time, and said he’s doing okay and sleeps a lot.

I visited the Zavaletas on Tuesday. It was good to see Hank as he slept quietly, good to visit with Cris, and good to sense the peace in their home. We still have so much in common on our respective brain tumor journeys, best of all our faith in the Lord Jesus – yet they’ve moved to a place we haven’t had to. I’m accepting that there’s a time when the fight is done, this earthly life is over, and it’s just the end. I'm accepting that there's a point when our prayers turn from pleading with God for healing to lifting up blessings of peace and mercy. I thank God for Hank, pray for a peaceful transition, and ask for God’s mercy in all of it, especially for Cris and the girls. It’s just a hard time.

I'm also accepting that just as being born is a process, so is dying. Before our kids were born, I thought a mother going into labor was like turning on a light switch. I thought one moment she was normal and the next she was racing to the maternity ward. But I observed with each of our children that labor started slowly, progressed gradually in small ways, and took weeks to build until baby day. That last part did move pretty fast each time, but it was just mother and child’s final effort before making an introduction.

Sometimes dying happens suddenly, but many times it progresses over days or weeks as one physically and spiritually begins to separate from life on earth. The act of dying is the final leg of the greatest journey a person has ever known, and while it has recognizable stages hospice workers can identify, it is necessarily a singular act made by the one passing away. It’s theirs alone. In this way, I've accepted that dying is as natural as being born. Psalm 116:15 takes it to another level, "Precious in the sight of the Lord is the death of his saints." We are eternal beings made by a loving Creator for a temporary span on the earth, made from its own dust. I've said before that death is not a problem for God. It sure is hard on us though.

There’s a link below to a video interview Hank’s friend did with him last June. If you watch it, you’ll gain some appreciation of who Hank is and catch a glimpse of his faith and courage. It’s beautiful. He talks about the choice to get busy living or get busy dying. Hank chose to live, and has lived with purpose in life. Remarkably, he also found purpose in brain cancer – to help others, to share his story, and to offer hope.

As I prayed with Cris and her friend this week, I remembered from Psalm 23 that in the valley of the shadow of death, the shadow is created by the greater light of God shining behind it. This valley may be an unpleasant place; but we don't stay there – we walk through it. And the reason we do not fear is we’re not alone. God is with us. He offers comfort and strength. In fact, Jesus defeated death and broke its hold on us. Death, our ultimate foe, truly is just a shadow. Hank and Cris have approached this time with the faith, trust, and lack of fear that comes from God. As in Psalm 23, their display of it honors him.

The fact we’re eternal beings is wired in us at the deepest level, though not everyone admits it. Fearing death is natural if you’re not sure whether you’ll spend eternity with God or apart from him. But confidence comes when you’ve placed your hope in the One you know has reserved a home for you in heaven and has the power to put you there. To the redeemed, death and dying become smaller things. It’s important to praise him who’s paid so dearly to secure our lives: 

“But I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me.” Psalm 13:5-6

Feeling better again

And she told me she was blue-blooded.

We’re midstream toward getting some answers about whether Susan is steroid dependent and if so, which drug and how much is best for her. We met on Friday with another top-drawer specialist at UCLA, endocrinologist Sheila Ahmadi. Her first step with Susan was to get up to speed on her history and order some specific tests to complete the picture. With that, we added the endocrinology stuff to an already scheduled set of fasting blood work this week. I think it was the most complex lab order Susan's had yet – at least ten vials for over 25 separate tests. We’re so thankful for her port catheter so she doesn’t need to be stuck in search of a vein – usually in vain. (That was appalling. I’m nearly sorry.) We’ll go back to UCLA next week for a bone density scan, follow up with her GP, attend the UCLA brain tumor conference next weekend, and then do another round of neuro-oncology and endocrinology visits. Remind me not to lose my Daytimer.

Meanwhile, Susan's gotten stronger again over the past couple of weeks and has been free from vomiting. It seems returning to her original steroid, Decadron, has normalized her system. In spite of chronic complications we thank God Susan's had no tumor progression for nearly 18 months, especially since two of our brain tumor friends are now on hospice, Robert Wearn and Hank Zavaleta. We pray for them and their families daily. Truly, the Lord is wrapping us in his care – and we continually praise him for the gift of life, his peace that keeps us, and the hope that sustains us.

Hard news of Hank Zavaleta

This is hard news to hear and share. Please pray for Hank, Cris, and family.

Hi everyone,
A few days ago hank starting getting worse, so yesterday we took him to LB Memorial ER and they found a large bleed in the brain. He is not in pain, but he cannot walk and he cannot speak well. He had a stroke and the bleed is so big that it has pushed his brain to one side. With all that said, the dr's and I have decided that he will go home tomorrow and will be put on hospice. No more treatment, he will just be made comfortable. He is alert, and understands most things. He actually looks better than I make it sound. Thanks again for all your love and support
Love to all, Cris

A memorable annivesary

Of the 26 wedding anniversaries Susan and I have had since March 23, 1985, I think this week’s was the first one we celebrated with an MRI. Why not? If silver is good for 25 years, then radiology works for 26. It was a double celebration because her scan was stable again. Even one of UCLA’s top neuro-radiologists chimed in after viewing the results to confirm her tumor hasn’t grown since last time. We are thankful. We got in for this MRI a month early since Susan has been struggling more lately with increased fatigue, confusion, and occasional vomiting. By ruling out tumor growth, I can put my mind at rest as we consider other causes like steroid adjustments. We’ll meet with a UCLA endocrinologist next week to sort it out rather than wait a month to see the one in Long Beach. We enjoyed a quiet, delicious Italian dinner at Marino’s in Bellflower to top off our day.

Every year at this time I consider how God has blessed me with Susan as the coming of spring brings reminders of when we met nearly 30 years ago. We met at church, on the 2nd floor balcony of the education building when I first attended the college group. Along with Susan, I met some of my soon-to-be-new friends and family. There was brother Randy Romberg, cousin Buddy Feenstra, friend Don Murashima, and cousin Gary Romberg who led worship while seminary student Kevin Korver led the group. I’d been invited by a friend from high school I thought I was dating. You know how guys are always the last to know what’s going on in a relationship? Yup. Barbie had already breezed past me for other prospects (we were actually good friends anyway), so I must have had a neon “available” sign floating above my head. There were so many really nice, good-looking young ladies there, I found I liked Emmanuel Reformed Church quite a lot. I kept coming back. I also began discovering God’s love for me like never before – but I’m just saying. I don’t think I’m the only kid who ever followed a girl to church.
 

Soon I found myself on a college group retreat in Solvang sitting at dinner across from Susan Romberg over a bowl of Anderson’s pea soup. I must have had a really low-frequency antenna because I had no idea she was winning a feminine scrum to see who had dibs on the new guy. All I knew is I liked the soup. But the girl in front of me was pretty nice too, and had beautiful blue eyes. We started dating and soon became inseparable.
 

We pretty much knew within our first year together that it would be the first of many. I proposed marriage at Tommy’s in LA less than two years later, and that’s another story. Our wedding would wait until March of 1985 as UCLA's spring break began. Planning the ceremony before that school year seemed too soon – but we couldn’t stand to wait until after, so the university dictated our wedding date. I finished my last final and winged it to church for our wedding rehearsal and dinner. Our wedding itself was a surreal blur of a day with family, friends, flowers, photos, and me gripping the end of the front pew with white knuckles as Susan walked down the aisle. A short while later we held hands tightly near our wedding party, standing side by side as we were launched into married life. Like getting fastened into a roller coaster car, we both were thinking, "Here we go..."
 

Valentine's dinner, mid-1990s

God gave me so much during that season that began in early 1982 – a church home, a wife, a new family, lots of friends, and deep growth in a lifelong faith that by grace will continue until I get to heaven. But in Susan, he’s blessed me richly. She helped lead me to know God and modeled out for me what it means to serve him. Though not removed at all from normal human failings, the purity in her heart for God has continually caused me to take hold of the grace he has for me as well. She has a super strong sense of commitment and responsibility that she’s countless times allowed to trump her feelings. Her faithfulness has been an anchor of stability in our marriage and our home, a refuge that created a sense of freedom. Her unmovable sense of humor means we can be serious when we need to and mess around when we want to, which is most of the time.
 

In Susan, I married up – into being a person I never thought I could be, into a life I never knew I could have, and into knowing a God I never knew was so real. I thank God for giving the type of woman described in Proverbs 31: “A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value.”
 

Not only that, but we’re crazy about each other and still are inseparable. There’s just nothing else we prefer than being together, even if that means spending the day at a cancer clinic. I think that’s a gift. As we celebrate our 26th anniversary, we don’t know if we’ll have a 27th. But a few years ago, we didn’t know if we’d have a 25th. God has been good to us. We’ll enjoy as many more anniversaries as he gives us.

Troubles with neuropathy and steroids

Susan’s had a hard time the past several weeks. Her lower legs and feet are still swollen, red, and painful. It’s been hard for her to walk. She tires easily and is prone to more confusion. Rest helps, but the leg pain is always there. All this has been dogging her since January, though now we now know more about it. Her leg and foot pain have been diagnosed as peripheral neuropathy, which is kind of a catch-all name for damage to the peripheral nervous system. Neuropathy can take various forms, affecting a single nerve, a group of nerves, or the entire autonomic nerve system. Among other things, it can be caused by nerve trauma, infection, diabetes, and liver disease – Susan's had all of these at some level since her brain tumor was discovered. Unfortunately, with such a grab bag of causes, treatment is difficult and usually is symptom-based with pain management.
 

Since Susan's biometric body scans done by our chiropractor Dr Jim Augustine show a distressed liver, we’re trying several remedies to improve liver health. We prefer this approach since pain meds don’t fix the cause and will only add more toxins to her liver. To further relieve that burden, we’ve also consulted with her infectious disease MD and discontinued her long-term maintenance dose of anti-fungal Fluconazole. There’s risk that meningitis may return, so we’ll watch for it. We’re making further meds adjustments with Dr Jim to replace Prevacid with natural supplements for digestive support and hope her steroids won’t notice since there’s also risk of ulcers.
 

Speaking of steroids, we doubled Susan's dose of Prednisone last week after a spell of nausea, vomiting and weakness. This assumes 2.5mg daily was too low for her system and was causing the nausea. To remove any guess work, her neuro-oncologist Dr Nghiemphu recommended she see an endocrinologist to confirm she’s actually steroid dependent and find out how much the right dose is for her. We were eager to have a new specialist since it’s been a while since we met one. We’ll see Dr Choi next month or sooner if there’s an opening.
 

Susan getting IV fluids in Long Beach.

Meanwhile, Susan had a new set of labs done last Friday to follow up on her steroid-induced diabetes. We determined she’d gotten dehydrated, so she received almost two liters of IV fluids that perked her up by the weekend. Unfortunately, her lab tests show higher triglycerides, so we’ll need to be stricter on the low-carb diet. Friday’s labs also showed lower red blood count and hemoglobin, known as anemia. Her primary care doctor prescribed OTC iron supplements and suggested she may have a source of bleeding somewhere like an ulcer – but if her dysfunctional liver is causing the anemia, the chiropractor’s remedy will help. Maybe we’ll put the MD and chiropractor in a room together and let them sort it out. I’m thinking Nerf guns.
 

The good thing about the phase we’re in is that Susan's tumor has been stable. The hard thing is dealing with persistent symptoms that have been dragging her down with no clear-cut causes or treatments. It’s not that something worse would be preferable, but as traumatic as they’ve been, at least her past ER visits brought us more quickly to identify an issue and treat it. So right now we’re stepping through a tangle of chronic disease – and Susan can’t walk very well.
 

Even so, we’re constantly affirmed of God’s love and presence, and are always encouraged by his promises like “I will never leave you or forsake you” (Joshua 1:5) and “I am the Lord, who heals you” (Exodus 15:26). We know God’s nature. He is loving, good, powerful, and purposeful. David says of God in Psalm 145:13 “Your kingdom is an everlasting kingdom, and your dominion endures through all generations. The Lord is faithful to all his promises and loving toward all he has made.” Our lives are attended by this mystery – circumstances we neither want nor can be rid of, along with the presence of a loving God who wraps us in his care and assures us of his good plans. We’re always thankful to him. 

Hank Zavaleta update

Here's an update on our friend and fellow brain tumor patient Hank Zavaleta from his wife Cris. Thank you for continuing to pray for him.

Hi everyone, Today Hank had his 4 week MRI and it showed that the tumors were still growing. They didn't grow a lot, but they did grow. So, Dr. is keeping him on the same chemo and infusion of Avastin for another 4 weeks. Then we will see what that MRI shows and we go from there. So, I think that the news was OK, it could have been much worse. Always a little hope. Thanks for all your well wishes, prayers, cards and your generosity with everything. We love you.

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.

Mystery solved and the art of dying

We’ve pretty well resolved Susan’s mysterious symptoms of late last month (nausea, confusion, leg swelling). Although I’ve been waiting to know the results of her latest blood work, for now we’ll chalk up the episode to steroid withdrawal. More importantly, she’s feeling better and didn’t need any intensive treatment.
 
Even though her ½ milligram of Decadron daily was already a minimal dose, evidently dropping to just two days a week was too much after 3+ years on the drug. We restored her to ½ mg daily as a precaution when her symptoms arose, but suspected a more troubling problem and had a number of doctor visits and tests.
 
She’d begun to improve by the time we saw her infectious disease doctor, who thought the steroid withdrawal scenario made sense. Her episode began about a week after we’d trimmed her dose; and tests were ruling out serious things like kidney failure and congestive heart failure. The doctor ordered another blood test to check electrolytes and confirm his thoughts. I still haven’t heard back with the results, but when she got better I didn't pursue it. Some health issues go away without a complete explanation, like my New Year’s chest pains. If you can rule out a menacing problem and just move on, that’s a good outcome.
 
I wrestle with a great sadness in the recent death of my friend and former employer, Steve Anderson, who passed away from cancer on February 3rd. We pray God's comfort for Cathy and their children as they grieve. At Steve's memorial service on Saturday, a packed congregation celebrated in a way that faithfully represented his life. As one speaker eloquently put it with friendly ribbing, Steve was a “PIL.” It's a fitting acronym. His life was marked by Passion – for God, for his family, his friends, his basketball teams, and his cars. Steve had Integrity – he was consistently the same Steve in each facet of his life. And he Loved well, as any object of his passion can attest.
 
Steve also died well. He was secure in knowing he belonged to the Living God in life and death, so the thought of dying came with peace for Steve, not fear. He still was fighting to overcome cancer in mid-January when I last visited him. But his fight came from a desire to live, not from a fear of dying. There’s a difference. 

The past few months had not gone well for Steve as his body had been increasingly unable to overcome the advance of disease and the harshness of treatment. The prospect of him passing away was sort of heavy in my mind as we chatted alone in his bedroom and he reclined under blankets to warm his thinning frame. We talked a few minutes about recent treatments, then I asked Steve how his spirit was. He said he was okay. Truly, he was. I witnessed no panic, anger, or frustration, but sensed the recognizable peace that comes from God when you know you’re in his hands. I asked how I could pray for him. He said he wanted to get well and become productive again. Steve was dissatisfied with the thought of living with a long-term illness and not being able to provide for his family. He wanted to live. We prayed he would live. But he knew dying meant he'd be with the Lord. His faith assured him it would be a greater existence.
 
Last autumn I read a remarkable article in The Wall Street Journal called, “Halloween, A Christian Perspective,” written by Rob Moll and taken from his book, The Art of Dying. It's a book I am now more eager to read. Moll used the occasion of Halloween to point out that our present age with its deep fears of death and dying was preceded by ages when Christians practiced the art of dying. One 17th Century author wrote a book on “holy dying” that was a natural extension of living a good life. Methodists in the 1800s called it “the happy death,” where death is unwelcome as it is now, but expected; so we may as well live to prepare for it. Moll shares an example:

In his book "Facing the 'King of Terrors,'" the historian Robert Wells quotes the 1824 obituary of Daniel Vedder, a man in Schenectady, NY: "His last days exhibited a scene peculiarly striking. . . . He expressed the most cheerful resignation to the will of his heavenly father. . . . It was observed that as he approached the hour of his death, his views of divine subjects [angels and spiritual beings] became increasingly clear."

Vedder's death illustrated the basic elements of the beautiful death. In it, family, friends and neighbors surrounded the dying person. He asked forgiveness for wrongs he had committed and forgave those of others. He confessed his love for each person and offered last words of advice or encouragement. Lastly, the dying person expressed his belief in life eternal and sometimes even described visions of that future realm. Loved ones — whether family, neighbors or church friends — were expected to be present as comforters and witnesses.

Jesus' work on the cross defeated death for us. The death we no longer have to fear is worse than annihilation – it’s an eternally regrettable separation from God. Jesus’ resurrection secured eternal life for us and earned us a place with him by grace. Until we cross over to that place and the God we will behold replaces earthly faith, what Jesus did gives us hope. Our hope makes a beautiful death possible. Our hope was strength for Steve Anderson as he was dying, and brings comfort into the void of his absence. Our hope is absolutely life-giving for Susan, our family, and me as we continue to navigate her brain tumor journey, and it makes us always thankful for the gift.  

You can read Rob Moll’s article here: http://robmoll.com