Susan's Brain Tumor Journey

Transformation

2012-01-29T13:16:00.000-08:00

We’ve been having a transformingexperience now for over 4½ years.

Life is all about transformation– as you read these words, you no longer appear the way you did when youentered this world and took your first lungful of air. Whether physical,mental, emotional, or spiritual, most of life’s transformations occur graduallyas we grow and have new experiences. These changes may not be evident in theshort run – but consider yourself after over a decade or two and you’ll see atransformed person. Life does that.

Some of life’s transformationshappen quickly, like when Susan's brain tumor made itself known. A headachethat wouldn’t quit and a search for the cause – six weeks. A CT scan; aseizure, stroke, and surgery – eight days. Having the reality of death thrustupon you is immediately transforming. So are the sudden effects of disabilitywith brain trauma. Having our game board overturned so suddenly made us wonder whatwe still had, what we’d lost, and what would happen next.

Loss itself is transforming –we’d lost our familiar way of life, we’d nearly lost Susan, and we hadcertainly lost control. But in so much upheaval, something stayed intact. It’sour foundation, our faith, our understanding of God; who he is and who we are.God had poured that foundation into us from his heart and his might. And itstayed. Our foundation shook as violently as anything else, but it didn’t groanor break. It stayed. And widened, deepened, and got stronger. It’s amazing.

Life has changed so much for ussince 2007. Susan went from a full-time mom of teenagers and practicing dentalhygienist to a brain cancer survivor. She’s been through the tumult andcontinues to fight. The kids and I have been along for the ride, all bolted toour foundation. What once was unbelievable for us became reality: not just cancer,but brain cancer; a stroke, craniotomies, chemo, radiation, meningitis,hydrocephalus; a brain hemorrhage; bone fractures, infections, and so on. Thensomething more unbelievable happened: we discovered we’re okay.

Somehow, in a short span of time,we have been and are being transformed. Our greater foundation means we regarddeath differently. I remember a time when thoughts of death for Susan broughtgreat fear. Not anymore. Not since we’ve walked through that valley andrealized there’s a wonderful, necessary purpose in it. We’ve moved toacceptance, even anticipation. When we talk about dying now, Susan looksforward to being with God in heaven. She wants to experience the new home he’sprepared for her. She knows living there will be truly living. It will bemagnificent. We’re together in our outlook. As much as we value and hold to ourlife on earth, when it’s my time to go I intend to have a running start.

Why arewe okay? One of Jesus’ companions, John, writing with wisdom and perspective towardthe end of his life, says: “There is no fear in love. But perfect love drivesout fear, because fear has to do with punishment.” (1 John 4:18) There was atime when Susan doubted God’s love for her. She was aware of her sin and knewshe deserved punishment. But there was grace. About ten years ago she was led intoa season of healing and deep affirmation of God’s love for her.

We both enjoyed that season, itstransforming effect on her. We enjoyed the confidence she gained in herself,her God, and her future. When breast cancer came, she was ready to handle it inthe right spirit because her foundation already had been improved. When braincancer came a year later, the love and strength God had poured into her madeher ready for that. The nearness of death, while unwelcome, did not send usreeling because God had already removed its sting and wrapped us in his grace. Thenwe realized we’d already been transformed. That discovery itself wastransforming.

So, this far along, we are: saved and being saved, healed andbeing healed; transformed and being transformed. We thank God for the foundationhe’s given us and look forward to what’s next.

Stable MRI, more chemo

2012-01-15T12:39:00.000-08:00

Weventured back to UCLA this week for Susan's two-month MRI following our busyand joyous holidays that flew by in hindsight. Well into her fourth round ofchemotherapy, Susan's status has been remarkably normal. Rather than having thesetback one might expect with tumor growth and chemo, she’s maintaining her levelof strength and ability. In fact, it’s common now for people to encounter herand say she’s the Susan they remember. We’re so thankful.

Notsurprisingly, her MRI was stable. We’re grateful to see no indications ofrecent growth, although Dr Nghiemphu is intently watching a couple of areas. Ourfull schedule on Wednesday featured labs, MRI, oncology update, chemotherapy,and meeting more brain buddies. Susan has done well after three monthlyinfusions of Carbopatin. She had only slight fatigue after the first two, witha few days of Zofran to prevent nausea. Her good lab results so far show her bodyhas handled the chemo well.

Theneurological exam that accompanies Susan's oncology visits is standard practicefor brain tumor patients. “Hold your head still and follow my pen with youreyes.” “Squeeze my fingers.” “Lift your knee while I press down against it.”“Other knee.” “Smile.” “Frown.” There are probably a dozen questions andcommands in all, including spelling “world” then spelling it backwards. (Even Ihave to think about that one.) Some of the questions deal with orientation ofplace and date. Susan can struggle with these, made even harder with word-findingtrouble. But her cleverness came through this week when she was asked, “Whereare you right now?” Her pause told me the answer wasn’t coming easily. Then shelooked into the nurse practitioner’s eyes and said brightly, “I’m with you!”That was a good one.

I frequently use our blog to reflect on oursituation and arrive at a helpful perspective. Four and a half years later,it’s still often surreal to me that Susan has a brain tumor. As much as we’veadjusted to our circumstances, it’s still somehow hard to believe what’shappened. A week ago or so I recognized Dr Javahery coming out of a medicaloffice building as we were about to enter for an appointment. He’s theneurosurgeon who performed Susan's emergency brain surgery in 2007. We’ve hadno contact with him since then. Amazingly, he remembered Susan; that he did herresection on July 4^th, that we’d had to move quickly against her worseningcondition, and that we sought treatment next at UCLA. He regrets not being ableto operate under more controlled conditions, but said he had to de-bulk thetumor or she would have died.

Time did not permit us to relate tohim what she’s been through, but it was enough for him to know what patientslike Susan experience and to see her there with me. He shared a proverb with us:“Absence diminishes small loves and increases great ones, as the wind blows outthe candle and fans the bonfire.” Having nearly lost Susan altogether, itstruth resonates. Our brief and lovely encounter allowed us to encourage eachother and made Susan and I glad to greet and thank him. The care of doctorslike him has been a gift.

As Iconsider how our brain tumor experience has been transforming us, I’ll share thosethoughts next time.

Chemo again

2011-11-21T11:26:00.001-08:00

Susanstarted chemotherapy last week after Wednesday’s MRI showed her brain tumor hasgrown compared to earlier scans. The good news is it doesn’t appear to be growingquickly – viewing the current scan next to one several months ago shows only a slightdifference. 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 tumorarea looks to be 15-20% bigger than before. It’s also clear especially on thePET scan that the “new growth” in her right hemisphere is not new and separatetumor tissue, but an integrated part of the mass.

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

Wereturned Thursday for chemo and got reacquainted with UCLA’s infusion centerfor the first time in about two years. Nurse Nikki fit us in to the scheduleand gave us the run-down on Carboplatin. She calls it good, old-fashionedchemo. I’m thinking “hand crafted by local artisans in small batches for cancerpatients with discriminating taste.” Actually, taste has something to do withit – one side effect is a metallic taste in the mouth since it’s a by-productof platinum. The drug has been in use since the 1980s for ovarian, lung, and head& neck cancers. Other effects include nausea & vomiting, slight hairloss, and neuropathy. It’s expressed through the kidneys, so Susan has two32-ounce water bottles to drink each day to get rid of the toxins.

Sofar, she’s doing okay. She needs more rest than usual, but has been feelingwell otherwise. We’ll be getting labs every two weeks to check for low whitecell counts and kidney & liver function. Since chemo effects are cumulative, anyproblems are more likely to appear in future months.

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

Moments later, my attentionturned to the couple in front of us, a wheelchair-bound woman and the manattending her who appeared to be about 40 years old. She looked much older andhad trouble speaking as he asked her if she wanted some water. Several times. Hestruggled to understand her and stepped away to refill her water bottle. She sippedfrom its straw when he returned, then labored to get his attention again. “Doyou want to go to the bathroom?” he asked. Her reply pained me as she waivedher arm up and down – “Gaaah.” He wheeled her toward us before turning down thehall. I saw the eyes of a 40-ish woman, evidently his wife, who appears fifteenor twenty years older. That poor woman. That poor couple. Look what braincancer has done to them.

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

PET scan shows tumor growth

2011-11-06T17:57:00.000-08:00

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

Knowingtumor progression tends to be a matter of time with GBM, I asked the doctor acouple of years ago when Susan was doing well what treatments remain for her ifand when it begins growing again. She said there are several otherchemotherapies available, including one or two she has in mind that might work forSusan’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 theright side for Susan since she’s already had them on the left. If the rightside of her brain has been compensating for trauma on the left by doing morework, we can’t risk her losing function under the strain of such focusedtreatment. But she may be eligible for experimental, targeted therapy like aclinical 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 ordespair; but this is the first such reversal Susan’s had in over two years, soit’s unnerving. Naturally, I want to answers for unanswerable questions, likewhat will happen next? And how long will Susan live? It helps to know they’reunanswerable so I can move on. Instead, we turn again to God who loves us, whomade us, who has good plans for us, and who knows the number of our days. We turnto his ample supply of grace and peace, resources that have become more realand satisfying than we could have imagined. We also turn to his word, again andagain, 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 oftrials. These have come so that the provengenuineness of your faith — of greater worth than gold, which perishes eventhough refined by fire — may result in praise, glory and honor when JesusChrist is revealed. Though you have not seen him,you love him; and even though you do not see him now, you believe in him andare filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of yoursouls. 1 Peter 1:6-9

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

Another PET scan

2011-10-28T19:39:00.000-07:00

Wewent to UCLA today for Susan’s DOPA PET scan so we can know more about the spotwe’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 fluidwas radioactive, so we won’t need to turn on the nightlight this evening. Mywife has a lovely glow about her.

She had a DOPA PETscan 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 soglad to have this technology available as a way to get a diagnosis without asurgical biopsy.

As I filled out her intake form for the folks in the nuclearmedicine department, I had to refer back to Susan’s health history page I createdwhen I could no longer reliably recall all of the procedures she’s had inrecent years. To abbreviate, she’s had breast cancer, brain cancer, twelvesurgeries, four other hospital stays, seven admissions through ER, radiation therapy and three rounds ofchemotherapy. It’s kind of a stunning list and would be hard to believe if I hadn’tbeen with her to experience it. But what’s even more amazing is the peace Godhas given us along the way and the peace that rests with us in ourcircumstances. 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’regrateful.

A spot to watch

2011-10-13T20:09:00.000-07:00

Aftermoving up Susan's scheduled two-month MRI by a week out of concern for what’scausing her increased confusion and fatigue, the scan yesterday revealed a new spot onher brain. It’s small, about 1 cm in size and does not appear to be growingquickly. 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 causingher symptoms. It’s neither great nor terrible news. It’s a spot to watch.

Firstappearing on her scan in August, it was too soon to conclude it was anythingbut a suspicious angle change compared to the scan in June. From scan to scan, the “slices” ofdigital images don’t match up perfectly with each other. Now we know the spot isdefinitely there and appears to have grown a couple of millimeters – not analarming 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 andunnecessarily invasive. Likewise, chemotherapy at this point would be hastygiven its side-effects.

She’llreturn in five weeks for an MRI of her head and neck, as well as an F-DOPA PETscan. Susan had one previously in July 2009 as part of a diagnosticstudy requested by neurosurgeon Linda Liau. I’ll skip the five-syllable word thatDOPA stands for – but a PET scan is another imaging tool that can lead to aquicker and more accurate diagnosis. We’re thankful to be associated with UCLA attimes 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 Nghiemphusaid 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 itsrelated troubles. As a result, we decided it’s probably not possible for Susanto stop taking steroids altogether. We raised her Decadron dose from a taper to 1mg daily so it can be effective against swellingand relieve her from taking pain meds. We’ll see whether her recently increasedconfusion and fatigue may be relieved as well.

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

As we viewed Susan's MRIyesterday, 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. Thestroke occurred sometime between her seizure on July 3, 2007 and when she wokeup after brain surgery on July 5^th. It caused the right-side visualfield loss and right-side weakness that affect her today. Susan has been throughso much. The brain images document her grueling battle with brain cancer – thestroke, 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 thisjourney. The Apostle Peter writes to us in 1 Peter 1:2, “Grace and peace beyours in abundance.” We’re thankful we’vegot loads of grace and peace. And we’ll take more.

A bit of a slip

2011-10-08T13:42:00.000-07:00

Susan’shad a bit of a slip lately that’s caused enough concern for us to move herscheduled MRI up a week so we can know if she’s had any tumor growth. The pastsix weeks offered a time for her to finish her kidney stone treatment withsmooth results and for me to focus on working as much as possible to try and shoreup our finances. When she began feelingmore fatigued and confused a couple of weeks ago, her symptoms seemed to pointto another urinary tract infection. We might expect as much after having herkidney stones laser-blasted. But last week’s labs came back negative forbacterial cultures and her symptoms continue, so we must return to the possibilityof cancer growth. We know God has sustained us all along and we continue totrust him through uncertainty as we ask for healing. We are grateful foreveryone’s prayers also.

Wedid arrive at an answer for her mysterious headaches lastsummer, settling on Vicodin “rebound effect,” a form of dependency fromlong-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 thesame level of pain relief as before. I remember when half a glass of chardonnayon our anniversary would make her feel like having a nap, so when the severepain of brain swelling came upon her in 2007, one Vicodin took care of it ifTylenol didn’t. Four years later, she’s needed two instead. Although her levelis way below that of a serious abuser or addict, it’s still chasing the dragon.Evidently, Michael Jackson did this in the extreme.

Withrebound effect, long term use of a drug like Vicodin results in a headache notbecause 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 bysubstituting a skin patch coated with a drug called Fentanyl to provide a baselevel of pain relief. It’s relieved her of taking Vicodin constantly, while Tylenolor maybe one Vicodin now suffice for occasional breakthrough pain. Clearly,medical treatment is a complicated thing. The drugs that meet a need duringcrisis can become a drawback themselves, as we’ve seen with her steroids aswell. I’m sure we’ll need to wean of Fentanyl next.

My mom asked this week whether Susan’sdoctors have said anything lately about what might happen next with a patientlike her. I said the last time I asked her neuro-oncologist was three years agoor so when Dr Nghiemphu said her prognosis was “guarded.” That’s an appropriateanswer since she is neither in remission nor imminently dying. She’s guarded. WhatMom 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 acancer journey because it’s uncertain by nature. Now to coping with it – God isour ever-present help. Our faith in him and in his good purposes for usactually needs uncertainty to grow and become meaningful. If uncertainty is thestuff of a cancer journey, trusting God through it is the stuff of faith. God’sWord is loaded with examples of people who’ve had to forge ahead when facedwith monumental uncertainties, but Abraham comes to mind in particular.

After God had promised to makehim into a great nation through his offspring years and years earlier, he foundhimself a childless old man with an old wife well past child-bearing age. Whenthey finally brought a son into the world in miraculous timing, God askedAbraham to sacrifice the young Isaac on an altar in the wilderness. Talk aboutuncertainty! To obey would mean taking part in a barbaric act that seemed outof character for a God who esteems human life, and would eliminate the verymeans for Abraham to become a great nation. What about God’s promise? Yet infaith, 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 uncertaintytransformed Abraham’s faith into righteousness. It cemented his place as thefather 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 goodcompany.A fragile circumstance is an opportunity to yield to the One who isgood, has good plans for us, and has a greater perspective than we can see. We don’tknow what will happen with Susan, but we know we can trust God along ourjourney.

Tumor stability: two years

2011-08-19T16:36:00.000-07:00

Weare grateful for another good MRIthis 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 stablescans since her last growth in 2009. Her persistent headache for the past six weeks had usand Dr Nghiemphu concerned we’d see a different result on Wednesday, but wewere 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. Thescan shows a change in the dura layer which can occur with leaking spinal fluidand would definitely cause headache. Her shunt could have a small leak; or oneof last year’s procedures might have caused one. But since Susan doesn’t havethe pain typical of a spinal fluid leak, it seems unlikely. We decidedto treat her pain for now with a medicated patch that hopefully will providerelief. Susan's ability to handle long-term discomfort with an upbeat outlook continuesto amaze me, and makes me glad for the strong woman she is.

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

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

Truly, God’s peacehas attended us since the very beginning of Susan’s brain tumor journey in2007. In spite of Susan being near death only days after we discovered herbrain mass, the trauma never overwhelmed us. God’s presence gave us confidencethat even if the worst should happen, we’ll be okay. In hindsight, we see howhe laid the ground work months earlier when we happened to be taking Psalm 23to heart. Verse 5 is a powerful image: “You prepare a table before me in thepresence of my enemies.”

I picture a table setwith silver, china, and crystal on a white linen cloth – in the middle of abattlefield. The enemies I fear are there; and there’s every reason I shouldfear them. But wait – whoever wants to annihilate me has been forced into acosmic time-out. Whoa. There’s a greater power at work here. And not only doesGod 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 beenthrough, God has brought peace to us in this way by helping us recognize ourconfidence in him.

The truth of anotherscripture also comes to mind. In Jesus’ farewell speech he said, “Peace I leavewith you; my peace I give you. I do not give to you as the world gives. Do notlet 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 suchpeace never lasts.

But God tells us the circumstances don’t matter to him. Hetakes our eyes off of our situation so we see only him. He meets us there toconsole 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 iswith us. His resources exceed our needs. How will it work out? We don’t know – but God does. We just know hecan handle it, so we’re going to keep following him.

Although Susan'sbrain tumor has been stable for two years, it contains aggressive cancer cells.Glioblastoma has no medical cure. She’s outlived most of our brain tumorbuddies already, so we’re quite aware of our circumstances. When we think aboutit that way, it’s easy for fear to take hold. But that’s just another enemy, soGod comes near again to remind us our lives our in his hands. We know he lovesus, has a plan for our lives, and has a home waiting for us in heaven. This isabsolutely what has been sustaining us on our journey. What would we do withoutGod and his peace?

No kidney stone left unturned

2011-08-11T19:08:00.000-07:00

We’rethankful 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 laserthrough the bladder and ureter into the kidney to break up the stones. With onemeasuring about ¾ of an inch, her stones were too big to pass and were at riskof causing a serious blockage. It was time to get after them. She handled thesurgery and general anesthesia well and had no complications. Blasting away atthe stones reduces visibility in there after a while, so she’ll need at leastone more treatment. Meanwhile, Susan has a stent implanted temporarily so thebits can pass through. Who knew we’d get to learn so much about kidneys?

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

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

Meanwhile,Susan has been dealing with mysterious headache for most of the past four weeksand is growing weary of it. We’ve had her blood tested a couple of times indifferent 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 hersteroid taper. While it’s good to rule things out, we still don’t know why she’shaving persistent pain and will need to wait until next week’s MRI and oncologyvisit. We’ll know soon (but not soon enough) whether she’s got brain swellingor more tumor growth, or perhaps another issue in play.

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

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

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

Four on the Fourth

2011-07-07T21:02:00.000-07:00

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

2011-06-17T22:14:00.000-07:00

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

2011-05-26T22:31:00.000-07:00

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

2011-04-29T13:08:00.000-07:00

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

2011-04-27T12:29:00.000-07:00

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

2011-04-26T20:33:00.000-07:00

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

2011-04-25T22:45:00.000-07:00

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

2011-04-22T15:29:00.000-07:00

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

2011-04-13T19:50:00.000-07:00

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

2011-04-08T15:51:00.000-07:00

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

2011-04-06T15:16:00.000-07:00


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

2011-03-29T20:22:00.000-07:00

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

2011-03-26T15:43:00.000-07:00

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

2011-03-17T12:32:00.000-07:00

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

2011-03-07T20:09:00.000-08:00

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

2011-02-27T17:00:00.000-08:00

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

2011-02-14T16:18:00.000-08:00

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

Please pray for Hank Zavaleta

2011-02-07T19:16:00.000-08:00

Our dear friend Hank had tough news this week as he continues his fight with GBM as you’ll read in this update from his wife Cris. Please join us in praying for Hank:

Well, honestly, I don't know where to begin.
Thanks to everyone for your continued love, support and prayers as you are traveling this journey with us. We are so Blessed to have the family and friends that we do.
With that said....Today’s MRI was not good...actually, it was real bad. In the past 6 weeks since the last MRI there are 3 areas of concern... The left temporal lobe, the left basal ganglia and the Left parietal lobe..All have regrowth. The left temporal lobe growth is pushing on the motor skills area, which will take away the ability for Hank to walk.
So, we, with Dr. Cloughesy decided to start a new chemotherapy tonight. This MAY slow the process down and has a 15% cure rate. Yes, 15%! :( It was that or do nothing. We chose to try one more time. This chemo is taken orally for 28 days, then 7 days off. His labs will be checked weekly for low blood counts. If they fall too low, he will be taken off. These tumors seem to be very aggressive, since 6 weeks ago they were not there and have grown substantially.
As you all know, Hanks prognosis has never been good, but he has always fought hard and today’s news was just hard to take. He isn't giving up and will continue to fight as long as he can. I don't want to sound negative because that is just not me, but the new prognosis is hard to handle right now and I know you want and should know what we were told......Dr. Cloughesy with tears in his eyes told us that Hank possibly has another 6 months ... with or without chemo. I am sorry to have to tell you this news. With much love, Cris

Mysterious symptoms

2011-01-31T20:52:00.000-08:00

We’ve been trying to figure out the source of some mysterious symptoms that have dogged Susan for the past ten days or so. Her most persistent troubles are swollen and painful lower legs with pinkish skin that’s warm to the touch, along with the increased confusion that’s been a faithful sign something’s wrong. Her legs and feet were sore enough ten days ago to make walking painful. She also had some nausea and vomiting, rapid heart rate and slightly higher blood pressure, and no fever.

We saw her doctor last Monday, who ordered labs, a chest x-ray, prescribed antibiotics for suspected infection, and scheduled a follow-up for today. The x-ray ruled out pneumonia; blood work revealed a slightly low red count (anemia); and labs came back on Friday to reveal another urinary tract infection.

If she had an infection other than a mild UTI, we’d expect a fever. If she had kidney failure, we’d see it in her blood work. If she had congestive heart failure, we ought to see shortness of breath made worse when lying down (she’ll have an EKG next week to rule it out). Swollen legs and feet can accompany the steroid taper we’ve been trying, but her lower dose was too small a difference to cause such a withdrawal reaction. We haven’t ruled out blood clots; but she’s been too mobile for this to be likely.

Thankfully Susan’s nausea, heart rate and BP have normalized; and she’s feeling better in general – but leg swelling and confusion remain symptoms without a theme. We saw her GP again today, had a scheduled follow-up with one of her urologists at UCLA, and did another set of labs. With the new lab work, we’ll see her infectious disease specialist at UCLA on Wednesday and hope to know more about what’s going on. Meanwhile, we’re glad she’s improved and not worsened, and are always thankful to God for his love, grace, and presence with us.

Caregiver stress?

2011-01-06T17:04:00.000-08:00

They say if you ever want a hospital bed, a bloody car crash or chest pains will get you one. This is true. I did not have a bloody car crash but did have chest pains - though I did not have a heart attack and do not have a heart problem. Read on if you want the story.

I had an episode with chest pains and rapid heart rate Saturday about midnight with a pressure and a tightness I’d not felt before. It was more than indigestion. After tossing in bed for several hours and trying to sleep, I woke up sweating a few times and in the morning tried to reckon with what had happened. I still had a lingering pain in my chest toward the left of center. I Googled “chest pains” and was reminded I felt a bit dizzy the day before, adding another item to my unwanted list of symptoms along with website warnings to call 911 immediately if you think you’re having a heart attack.

I felt sort of okay in spite of everything, but was nagged by the idea of being a dead idiot if I ignored the signs. I don’t want to leave my family, especially now. This is the stuff of cardiac rationalization. I arranged for the boys to look after Susan, drove to Long Beach Memorial and checked in to ER. Like I said, you get a bed right away. The ER doctor said my initial EKG showed an abnormal rhythm – another cause for concern. Also, my grandfather died of a heart attack at age 68, so the case was building.

Then I entered into “hospital time,” an alternate universe. This is the experience of staying in one place and staring around for endless, sluggish moments only to wonder how six hours crept by so quickly. I’d had a blood test right away to check for the enzymes that are released when someone has a heart attack and was told they’d need two more at eight-hour intervals to follow any trend. I never knew enzymes have trends. (All blood tests showed no signs of a heart attack.) After seven hours in an ER bed, I was moved to the cardiac monitoring unit on the third floor. At least I had the wisdom of going in on a Sunday so I could watch football all day and night. If I were in charge, I’d have big-screen TVs and hard-wired NFL programming in the cardiac unit since it’s mostly men there anyway. And I’d add a cigar lounge.

Cardiac Monitoring Unit Cigar Lounge (concept)

They must have a subtle way of getting cardiac patients onto a crash diet or something, because I’d been there since about 8:30am and finally had food that evening. Then at midnight I had to go “NPO” which is abbreviated Latin for “nothing though the mouth” but also could stand for "no pizza order" and "nearly passing out." I would not eat or drink again until after my stress EKG, which turned out to be some 18 hours later. My body went into survival mode and consumed any lingering cholesterol and fat, effectively curing me of heart disease in case I had any.

Also, I think nurses must take a special class called “Waking People Up.” Mine were really good at it. One of them burst into my darkened room, flipped on the lights, and pretty well shouted “Good morning! I’m here to draw your blood!” If the light and noise don’t wake you, the needle will. These are professionals.

There must be another nursing class called “Tact.” One nurse needed to put a new set of EKG electrodes on me, noticed my hairy chest (I can’t help it if I’m manly), and took to scrubbing me with an alcohol wipe like my pecs were a cast iron pan coated with burnt scrambled eggs. Then she said in broken English, “You’re sensitive. Your skin is red.” I said, “Oh,” in perfect English, which means, “Really? You mean my red skin has nothing to do with your Brillo Pad treatment? Was your last patient a rhinoceros?”

Aside from getting some nutrition, my last in-patient event late Monday was a cardiac stress test that involves resting EKG and heart ultrasound, 5-10 minutes on a treadmill from a warm-up to a jog-walk, and then transfer back to a bed for EKG and ultrasound with rapid heat rate. I was able to reach 100% of my maximum heart rate with no trouble and little sweat. The cardiologist said I met and surpassed every aspect of the test, then gave my heart an A+ grade. While I haven’t exercised regularly since Susan’s brain tumor came along, evidently my prior years of lap swimming have paid off.

The cardiologist ruled out a heart problem, which was the point of getting hospitalized, but he could not say which of a list of things may have caused my chest pains. Stress can do it. Since I can’t eliminate stress, I may need to put up with chest pains now as well as the mid-life acne. Along with meeting my health insurance deductible about as early in the year as I could have, this episode reminds me that I need to take care of myself so I can take care of Susan and our family. I so admire Susan for how well she’s endured her many hospitalizations without going nuts or making me crazy. She’s a champ. And I’d rather be a caregiver than a patient.

Another good MRI

2010-12-31T12:28:00.000-08:00

We ventured back to UCLA on a rainy Wednesday for Susan’s scheduled MRI, suspecting we’d have a good scan since she’s had no symptoms of tumor trouble. We were not disappointed. Compared to November’s scan, her tumor is stable. Again. I think this is Susan’s 6th or 7th MRI without tumor progression dating back to 2009. When Dr Lai matched it with prior ones including her hemorrhage event in January 2009, he called her progress “incredible.”

We’ve learned to hold a doctor’s comments in check because it’s easy and unwise to project outcomes from such remarks, whether good or bad. But we’re genuinely encouraged that Susan’s tumor trend has been so positive for such a long while. Her brain cancer is not cured – it’s not even in remission – yet as long as this pause lasts, she gathers more resources for the next battle. She did have another urinary tract infection develop last week, and so began another course of antibiotics amid the reminder we still need to deal with the kidney stone that’s throwing off bacteria. Her next urology follow-up will be in February unless we need to step it up.

We’re so thankful for her current progress, for a good year overall, for the help we’re getting constantly from every direction, and for our peace and strength that are obviously God-given. As we look to the New Year, we know 2011 is infused with another gift borne of the Lord’s powerful support: hope.

Our happiness

2010-12-23T13:54:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

Steroid taper continues

2010-12-10T12:07:00.000-08:00

Aside from often-daily bouts with headache that require rest and pain meds, Susan continues to do remarkably well on her lowest dose of Decadron in at least the last 18 months. Headache is common as her body adjusts to less of the oral steroid and needs to jump-start its own natural production. But the fact that she’s been free from tumor or other problems for months means we can pursue this effort as far as possible. It also gives her a chance to shed the influence of side effects like bone loss and diabetes. We’ve learned to be ready for setbacks, but become more hopeful with the progress as time goes on. She’ll be back at UCLA before the new year for her next MRI and tumor update – but symptom-wise, things look good.

Today’s Brain Tumor News Blast from the Musella Foundation highlights research co-authored by Doctors Leia Nghiemphu and Linda Liau, Susan's UCLA neuro-oncologist and neurosurgeon. Their team’s 2006-2008 clinical trial study of 70 new GBM patients showed improved progression-free survival when treated with a regimen of Avastin (Bevacizumab) and Temodar (Temozolomide) following radiation therapy. Susan was not part of the study, but she's had each of these treatments during her course of treatment at UCLA.

Get the story: Journal of Oncology, Dec 2010

While the clinical trial did not advance overall survival, it nearly doubled progression-free survival from 7-8 months to nearly 14 months. Such gains may seem small – but to me the study reveals the intensity of the battle as specialists try to find better ways to help GBM patients survive this devastating disease. That the study’s overall survival rate was 14 to 21 months makes us all the more grateful for Susan’s survival and good condition at 42 months. We’re also proud of the work her doctors are doing and glad she’s being helped by the best of the best.

Updates: Hank and Susan

2010-12-01T12:00:00.000-08:00

Here’s good news from Cris about Hank:

Hi everyone, Sorry for not writing sooner, just got caught up in the good news and decided to get in the holiday spirit. With the help of a good friend, I got the Christmas lights up while Hank had his vaccine up at UCLA today. So excited my house sparkles!!
Anyways, Hank’s MRI was stable - Yay!! So, he will start his infusion of Avastin next week and he will be getting it every other week for as long as it keeps working. He is also getting the vaccine, so with both treatments we just pray that he will continue to do well.
Again, I want to thank everyone for you prayers, love, kindness and your unconditional support. Oh yeah, and all that great food from LBFD, you're AMAZING. We love you all soooo much.
Take care and enjoy the simple things of the holiday.....each other. Remember...Jesus is the reason for the season.
Love to all, Team Z

We thank God for Hank’s progress. We’re also thankful Susan continues to do well. November was blessedly quiet for us medically. She has regular periods of headache and tiredness, but gets relief from rest or meds. We’re progressing on her steroid taper and will have her Decadron dose down to 0.5mg daily this week. Past efforts to get free of the steroid have been interrupted by other medical events that required higher doses again, so we’re hoping this one goes well.

Thanksgiving brought us to relaxing hours with family in Lakewood and Angelus Oaks following best-ever Thanksgiving worship at Emmanuel. Every year is the best ever because we see all the new ways God has been faithful. Like Psalm 92 says, “It is good to praise the LORD and make music to your name, O Most High, proclaiming your love in the morning and your faithfulness at night.” It IS good to give thanks to the Lord. Observing that his mercies truly are new every morning – that situation I feared actually turned out okay, or that hard time came attached with unexpected blessings – reminds us who is in control, that he is good, and his goodness is for us.

Most days may be ordinary and forgettable, but Thanksgiving Day allows us to take stock and sum them up. Thanksgiving brings perspective. We realize strands of time may flow by unnoticed, but seeing them strung together year by year, colored with reminders of God’s loving presence and faithful acts, a pattern emerges that encourages our faith. We see God weaving our lives into a tapestry of his careful, creative design – always unfinished, but always more beautiful. We’re thankful.

Good news for Hank and for Susan

2010-11-09T19:27:00.000-08:00

Cris Zaveleta posted on CarePages:

Yes, we are home. AGAIN. and I plan on keeping it that way! Hank is doing well and is continuing to rest. He is having a little trouble with his right leg/foot and walking isn't easy, we have no idea what that is about, but we will figure it out and get him moving again.
I know I've said this a million times, but I just want to THANK everyone for your continued support, love, prayers, visits and yummy food. We feel so Blessed.
Hank will start the dendretic cell vaccine (clinical trial) in two weeks, he will get an injection every other week for a total of 3 injections. He will also start an I.V. medication-Avastin, in 4 weeks. I’m not sure how long they will give that one. He will continue to get MRI's every 6 weeks to keep an eye on things. That's the plan for now. I will keep you posted. XOXO - Cris

Susan and I were able to visit and pray with Hank and Cris last week after Susan’s oncology visit, and were greatly encouraged to see how well he’s doing and how beautifully they trust God and reflect his peace. Strangely, it’s almost easier to go through an ordeal like GBM yourself than see others suffer with it. That was true for me concerning Hank and Cris until I realized we share the same confidence and hope in God. Ultimately, I know Susan and I are okay, that’s why we have peace – now I know Hank and Cris are okay, too.

I love Hank’s heart for the Lord and how he so freely voices his desire that people know Jesus. He shows neither pretense nor embarrassment in sharing his faith. He’s just a guy for whom the important things in life have been brought into focus while other things have been stripped away. He knows whose he is and where he’s going. As I pray for his healing, I’m also praying for the desires of his heart and thank you for doing the same.

Meanwhile, we’re encouraged once again with Susan’s latest MRI that shows her tumor is stable. I’d been concerned that more headaches recently were a sign her tumor was growing, but since she wasn’t worsening in other ways, I was cautiously optimistic. I figured we were dealing with her latest effort to get off steroids. The doctor agreed.

But the next day she told me the radiologist who viewed her MRI noticed signs of thickening of the lining outside Susan’s brain (the dura), a condition called intracranial hypotension. It usually occurs if there’s a leakage of fluid from the spinal cord from a spinal tap or an accidental puncture, and could have happened when she recently had some electrodes removed from her lower back. If so, perhaps the leak was a small one since she didn’t have the terrible pain that comes with rising to sit or stand. In any case, the condition usually resolves on its own. Susan has been feeling well lately, so we’re okay with not having a complete understanding of what happened.

We’re glad to have Susan well and free from tumor progression so we can concentrate on weaning off steroids again and hopefully her gaining strength and function. Her gains are small and incremental while memory and vision are still difficulties for her. Still, we’re aware that God is keeping us in his care as we seek him for healing, strength, and restoration. I’m reminded of God’s word that says, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:9) We continue to trust him in the mystery.

Hank update: upcoming brain surgery. Please keep praying.

2010-10-23T11:24:00.000-07:00

Here's a note from Cris on Friday night:

First, let me say thanks to all of you for your kindness, your generosity and love that you continue to surround us with, we cannot do this without your support. Thank you, Thank you...
OK, as you know Hank had a seizure on Monday the 18th. On the 19th at 11pm he was transfer to UCLA, where his Doctors could monitor, test and try to find out what was going on. He stayed in ICU for a couple days including his birthday.
As the days went on, he continued to get better and today he was discharged. Yes, we are home.
We were told that nothing was going to be done at the moment, they were just going to observe the tumor and bleed for a while. This was the residents telling us this info, Dr. Liau was out of town at a conference.
Well, just as we were about to leave, Dr. Liau showed up, she told us that the tumor is growing fast and that the bleed is under the tumor so she's not sure how much the area is bleeding. Then she told us that she would like to do surgery as fast as possible since the tumor is growing so rapid. The last MRI Hank had was on the 12th, 1 day after surgery. It has grown a lot since and now the bleeding. She first said that she would like to do it on Monday, yes, 3 days from now. As you can imagine, we were surprised. When she went to check her O.R. schedule, it was booked. So for now, Hank will be back in surgery on Monday, November 1st. Yes, it is scary, but what choice do we have. They cannot do anymore chemo or radiation, so for now surgery is the only option. She will plan on giving him the dendritic cell vaccine some time after surgery.
Goodnight, Cris

Thanks for continuing to pray for Hank, Cris, and their family.

Note from Hank's wife. We need to pray.

2010-10-20T12:21:00.000-07:00

Hi everyone,
We're back at UCLA in the ICU. It all started on Monday afternoon, Hank woke up from a nap and had trouble speaking. With the help of friends I took him to LB Memorial, they think he might have had a seizure so they took him to get a CT scan and found a bleed. They kept him in the ICU for observation and decided it was best for him to go back to UCLA, so we are here now waiting for tests and results. He is unable to speak well and is still having problems comprehending. I will keep you posted as we find out anything new. Thanks for your continued love and support.
Cris

Please pray for Hank

2010-10-18T14:00:00.000-07:00

Please pray for our friend, Hank Zavaleta. Hank is a brain buddy of ours who was diagnosed with GBM in 2003 and is exceptional not only as a seven-year GBM survivor (off the charts), but also as a champion of faith, courage, and action. He meaningfully inspires the people around him – fellow firefighters, church family, and brain tumor patients and professionals. He and his wife Cris have invested precious time and energy to help Cranium Crusaders raise I think $150,000 to $200,000 for brain cancer research at UCLA. Click here for their website. We’ve also witnessed Hank in action at UCLA’s brain tumor conferences and the upbeat way he brings hope for other brain tumor patients and their families. Hank is just an incredible guy we feel privileged to know.

Hank’s story was featured several years ago on the UCLA Neurosurgery website. Click here.

Sadly, an MRI in September revealed a new area of tumor growth after years of treatment with surgery, radiation, chemotherapy, a clinical trial cancer vaccine, and a clean MRI in July. Another brain surgery at UCLA last Monday went well in spite of some visual side effects. Then Hank & Cris learned a post-op MRI shows even more new tumor growth in an area behind his left ear. Dr Liau and UCLA’s brain tumor board will explore options that include more surgery, Avastin, or vaccine, but Hank will need to heal for a few months before having new treatment. This is obviously heavy news for a battle-tested family who’s been thrown into crisis mode again and is trusting God for the days ahead. Please join Susan and me in praying for healing and peace for Hank, Cris and their daughters.

Here’s a CarePages message from Hank on Saturday that includes a powerful word of advice from a brother who’s had his priorities sharply focused:

although i struggle with writing 4 now, please know that i feel all of ur love 4 us.
please keep us in prayer.....live....love.....and forgive,
hank

Thanks for praying.

On faith

2010-10-12T19:15:00.000-07:00

With over three years since Susan’s brain tumor came along, we've come to accept the reality of our situation and trust God with the outcome. Every now and then I’m reminded of the grim statistics, and saw another today: fewer than ten percent of people with GBM are still alive five years after diagnosis. Still, Susan has outlived the average survival of 12-18 months and has responded to treatment each time her tumor has grown. So, we keep in mind that statistics are a collection of data about a topic, and they don’t determine the outcome for a person with brain cancer. As I noted recently, Susan has had no great improvement, but hasn’t had any nasty complications for a number of months, while her tumor has been stable for a year. Our stance remains the same – trusting God, praying always, hoping for the best, and ready for anything.

Given our outlook, we haven’t needed to ask why. I think lots of people get stuck there. Upheaval is frustrating. It doesn’t make sense. It’s not fair. It’s natural to bog down in it, shake your fist at the sky, and demand, “Why?” But we accept that if the question is unanswerable, we waste a lot of resources asking it. Instead, we’ve found peace in trusting the Lord and his good, mysterious plans for us, and focusing on our response to our situation. That's a work in progress; but we have peace. Even so, the desire for understanding remains, though not in a disruptive way. It just makes me wonder – what is God doing?

I was invited to sing on the worship team at church on Sunday at 9:00 and 10:30, an activity that used to be a weekly routine but now is something we can manage once in a while when Bob asks and when Susan is doing well. We used to be at church for hours on Sundays, interacting with lots of different people all over the campus. Lately it’s different – we park in a handicapped space near the side entrance, scoot into the sanctuary sometimes on time, visit the restroom after the 9:00 service, get home so Susan can rest, and interact with whomever we might see within that small space and time. But this Sunday we were there for several hours once again, more mobile, and able to run across a variety of people. The recurring comment amazed me: people are praying for us. We know this, but Susan and I continually heard words like, “I’m praying for you.” “We pray for you every night.” “You’re in our daily prayers.” “Our small group prayed for you this morning.” It was awesome to hear, in random encounters, over and over again. The message was unavoidable. It made me wonder – what is God doing?

Last night while dreaming I heard a voice say, “Faith is like a tree. It sends down roots and grows strong and tall, stretching its leaves to the sky.” Then I heard another voice. “No, faith is like a feather, delicate and blown around by the wind, and completely unable to fulfill its purpose on its own. But with others, connected to the body and the wings of the Holy Spirit, it soars to unimaginable heights.” THAT made me wonder.

Easy trip from pre-op to post-op

2010-10-09T19:35:00.000-07:00

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

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

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

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

Tumor stable again

2010-09-12T18:06:00.000-07:00

It's been about a year since Susan's last tumor progression and the beginning of her latest chemotherapy. The good results since then extended her MRI intervals from 6 to 8 weeks and led to last week's scan and oncology visit. The good news continues – her tumor was stable once again. We're so thankful. The scan shows more swelling near the tumor site; but that's to be expected since we're tapering her steroid once more and are down to about 1mg daily of Decadron.

There's been little development on Susan's kidney stones or other urology issues, so the holding pattern continues. In fact, much of our life seems to be a holding pattern. Her brain cancer has not advanced, nor has it healed. She's made a phenomenal amount of physical and cognitive improvement especially compared to 2007 and 2008, but remains encumbered and far from normal. We're still at peace with the situation and trust God with the outcome. In a moment of reflection about her progress today, Susan said, "I'm getting better – slowly, but I'm getting better. Who knows what God has planned for me? I'm going to find out."

We had a wonderful Labor Day weekend in the mountains and enjoyed perfect weather in the forest at Angelus Oaks. Susan was able to relax on our new deck, join friends at the annual potluck, and felt well enough to venture up the road to a party at the Gebb's. We're supported on all sides by loving family and friends, and we're grateful.

Feeling fine

2010-08-28T14:07:00.000-07:00

In spite of occasional spells of tiredness or pain, Susan feels well these days. She’s been diligent about eating properly, so her blood sugar level has measured well below 150 for most of the past few weeks. It’s amazing to test her glucose after breakfast when she has a bowl of cereal once a week instead of her usual eggs – cereal sends the level higher and proves the benefit of low-carb eating.

In discussing results of the bladder pacemaker during our follow-up urology appointment, Dr Kim decided the test was successful. Even so, Susan probably won’t get the permanent device since its manufacturer has not approved it when having MRIs, a frequent event for her. When the issue came up just before surgery, I wondered why we were doing the procedure at all and why we didn’t know about the conflict earlier. The company rep said there’s no known problem with the device, but it had not been specifically approved for use with MRI. The trial device posed no MRI risk and would provide good information, so we went ahead. Since then, Susan’s specialists have been chatting about the trade-offs; but I suspect we’ll be safe and pass on the permanent device. She’s doing okay right now in that department anyway.

She’ll have an infectious disease follow-up next week and her scheduled brain tumor check-up after Labor Day. We’re ever in the Lord’s hands.

I often say Susan is the sweetest person I know. She handles her illness bravely, repels the urge to complain or have a sour attitude, and is always concerned about the welfare of others, especially our family. Her desire to do things right and obey the rules makes her a gracious patient. Compliant by nature and having lost a good deal of independence, she sometimes even asks if it’s okay to hold her fork in her other hand. My Susan is just so sweet.

Last night as I soaked in her adorability, I told her again that I love her. She echoed her feelings to me. Then she said she’s become more aware of feeling surrounded by the love of others, more than she has before, and that she’s feeling loved by people who never may have expressed it before. I agreed that lots of people love her and are showing it in many of wonderful ways. We noted the paradox of an illness like GBM – that it connects you more deeply to others than when life was normal and busy and overlooked. We agreed that if cancer creates more meaningful relationships, that’s not a bad thing.

Another good week

2010-08-14T11:56:00.000-07:00

With more distance between her and the conditions that led to July’s hospitalization, Susan continues to improve. Some of her sores from shingles remain and still are painful, but much less so. We had several more urology activities, including another consultation on July 30 to discuss the treatment plan for Susan’s kidney stones. While the stones may be causing her ongoing infections (with another last week), we decided to table the issue until we know whether the bladder pacemaker may fix her incontinence and another point of infection.

Susan had an InterStim device connected Tuesday on a one-week trial basis. She has a controller the size of a large TV remote that clips onto her waistband and connects electrodes passing under her skin to the sacral nerve on the lower spine. The idea is that when urinary urgency or frequency is caused by disrupted brain signals, sending mild electrical pulses to the pelvic floor can help a person regain control. Susan has had some improvement so far. We’ll evaluate the results on Monday with the urologist. If they look good, we’ll schedule another surgery to implant the device.

I continue to be amazed at Susan’s unquenchably positive attitude and enduring faith. To her, today’s headache is not as bad as yesterday’s and will be better tomorrow. Those shingles sores were a lot worse a few weeks ago. That back pain will only last a few more days. True, her incomplete memory means her awareness of pain that continues even over days at a time is blessedly distorted. But her ability to draw from her reservoir of hope truly is life-sustaining.

Speaking of her incomplete memory, I enjoy Susan’s remarks lately when it’s time for dessert. Since her diabetes became known to us, she now enjoys a low-carb fudgesicle after dinner instead of something with lots of sugar. She really enjoys it. A lot. She’s thrilled she actually can have such a treat. She’s astonished it’s not forbidden. It’s indulgent. It’s dreamy. It’s so satisfying. Carried away in a silky-cold chocolate stupor, she’ll say something like, “I know I have this treat every night, but what's nice about not remembering things is that I forget how much I enjoy it, so I get all excited when you bring it to me the next night. And now it’s the next night already so I’m really happy.” “Yep,” I reply, “First time every time.”

When we broke Susan’s overnight fast after surgery at noon on Tuesday, we gave thanks for our food and for all the support we get from doctors, family, and friends. Susan recalled being greeted by someone at church on Sunday who’s familiar with our situation and said she’s praying for us. Susan doesn’t know her well. She thought about all the people she doesn’t know who know about us and support us in prayer. Her thoughts turned to Heaven. She said someday she’ll go to Heaven and she’ll see all these people she doesn’t know now but will know then, and will have an instant connection to them. As she’s said so many times before, she said we have no idea about the things God has in store for us in Heaven. It will be amazing.

I think of what John says – that disciple who saw and heard and touched and knew Jesus on earth, and years later writes about what is to come.

“Dear friends, now we are children of God, and what we will be has not yet been made known. But we know that when he appears, we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure.” 1 John 3:3-4

This is the hope that’s burned into our souls. This hope holds out the possibility that God could heal and restore Susan instantly for the remainder of her years on earth. But greater than mere possibility, this hope holds out real knowledge for us. We know we’ll have eternity with God that’s beyond anything we could imagine.

Next steps

2010-07-27T20:56:00.000-07:00

The weeks following Susan’s recent hospitalization have brought gradual improvement, healing and strength. Shingles has been painful for her, more painful and longer lasting than I thought they’d be. Her sores have remained quite tender and were accompanied by severe headache for 10-14 days. She seems to have had some benefit from taking Neurontin, a good remedy for the nerve pain that comes with shingles. She also had relief from an ointment called The Shingles Solution that a friend recommended.
As Susan has improved, she’s been having tests and consultations with UCLA urologists to resolve her urinary tract infections. Last week's CT scan of her abdomen revealed at least one kidney stone in addition to the large one diagnosed earlier. Dr Schulam may want to test the kidney for infection since it may be feeding bacteria to the rest of her plumbing. We’ll know more this week; but I suspect a treatment of some kind may happen soon.

Meanwhile, an exam of Susan’s bladder by Dr Kim thankfully revealed no tumors or other disease. A separate urodynamic study indicates the incontinence she’s struggled with is probably the result of her brain tumor. Dr Kim recommended a novel solution – a bladder pacemaker that localizes bladder control with a device wired to her sacrum or lower spine. Although the surgery to implant it carries the risk of infection, the result should remove another cause of infection and improve quality of life. She’ll have the outpatient procedure early next month.
As far as her diabetes is concerned, Susan’s way-high glucose levels we discovered a month ago have improved as infection abated and we de-carbed our diet. She’s also begun to taper her steroids again, a months-long process we’ve attempted so many times. I’m hopeful that given her circumstances, she can be cleared of diabetes eventually and the drug (metformin) that comes with it. We’ll keep the healthier diet though.

A challenge to any healthy eating plan, we enjoyed Susan's birthday jubilee last weekend with a just-the-two-of-us dinner at Walt's Wharf in Seal Beach, thanks to Susan's parents. There was a lobster tail with her name on it. Then on Sunday, we had a wonderful family dinner at Outback Steakhouse thanks to our loving friends Mitch and Joyce. There was a rib-eye with my name on it and a dessert for all to share. We're so grateful to celebrate Susan's birthday for the third time since our brain tumor journey began and trust God for as many future ones as he gives us.

I recall a few episodes that came about during Susan’s hospital stay. We were in the midst of Susan’s longest ER visit yet at 36 hours. Susan was quarantined in one of UCLA’s negative air pressure rooms while they ran tests to find out what was wrong with her. Did I mention they ran tests? It’s a process of elimination, a scientific exercise to rule out this idea or that until they zero in on what’s wrong. Each test takes time and each result takes time. With doctors from the ER, internal medicine, neurosurgery, and infectious disease involved, there were a lot of Dexters in the laboratory. At one point about 18-20 hours into it, one doctor came in, asked some questions, and promised to return with more information after he consulted with the team. After he closed the curtain and the sliding door, Susan deadpanned, “Okay, see you in two weeks.”

One night after she’d been moved upstairs and Susan had her carb-controlled dinner, I went down to the cafeteria and succumbed to the frozen yogurt machine. The vanilla splorted out with force and quickly filled the cup. I pressed on some M&Ms and topped it with a clear dome lid. I asked the cashier as she pointed to the scale, “So this stuff is sold by the ton?” “Yes, and you got it full!” she replied. “Yep,” I said. “It came out fast. I didn’t fight it.” When I shared the contraband with my delighted but now-diabetic wife, we giggled and whispered that we were getting away with something. “This is our way of sticking it to the man,” I said. “Because what the man doesn’t know – won’t hurt you.” Susan said, “Hey, I’m sick anyway, so what’s the difference?”

One last item. Either I enjoy messing with cashiers or I’m a repressed drive-by comedian. Actually, it's both.The night Susan was discharged, returned to the cafeteria for a cup of coffee, filled the Starbucks cup, capped it with a sipper and sleeved it. Evidently, the cashier didn’t know if it held coffee, tea, or hot chocolate and needed to ring it up properly. “Coffee?” she asked. Unable to resist, I raised my cup. “No thanks, I’ve got some already.” At least she didn’t throw anything at me.

Resting at home

2010-07-11T13:21:00.000-07:00

We finished a long day Friday in the hospital time warp, finally having Thursday morning’s MRI on Friday at 4pm, getting discharge instructions at 6:30, and actually leaving UCLA at 9:30. Susan is resting at home now, receiving IV antibiotics and oral antivirals for the next several days. She’s still tired and headachy as she recovers. This episode will be summed up under the immune-compromised department, with dual infections of the nerve roots with shingles, and the urinary tract with e. coli or proteus or whatever the little bugger was. Friday’s MRI was clear of any new threats for bleeding or aneurism, so we assume the blood in Susan’s spinal fluid was from having to poke her several times and manipulate the needle to get fluid moving. We remain thankful our meningitis concerns were a false alarm that led us to discover and treat the real issues.
Our next steps will be follow-up visits with various doctors to treat infection, kidney stones, diabetes, and the brain tumor. I think that about covers it.

While in the ER this week, a doctor from the internal medicine team wanted to clarify Susan’s “code status” after reviewing the advanced healthcare directive we have on file. Thanks to Attorney Mark Doyle, Susan and I completed our will and trust documents in 2003. They include a power of attorney so each of us can act on the other’s behalf, and advanced directives that outline what life-saving measures we’d like performed if we’re seriously ill. Our chat with the doctor brought the idea from the legal to the practical.
While the document dictates Susan’s desire that no extraordinary measures be taken to prolong her life if there’s no hope of recovery, the doctor needed to know what they should do if she “coded.” Should they perform CPR? Should they intubate for breathing? Defibrillate her heart? Well, yes, of course, they should try to save her life. These actions, the doctor pointed out, could leave Susan alive but unresponsive and lead to another decision families don’t like to make – when to “pull the plug.” Wait – that’s different. What we really want is to be revived if everything’s going to be okay afterward, but not if it won’t. That’s the document we want to sign.
So with a brief incursion into the world of bedside decisions and medical ethics, Susan and I clarified it for the doctor – we want try to save her life. Her status is “full code.” This is just another instance of our lame attempts to control the uncontrollable, leading us to recognize our lives are in God’s hands. I returned to the document where all this stuff was already worked out and once again found the real peace of mind we seek, “All the days ordained for me were written in your book before one of them came to be…Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139: 16, 23-24.

Shingles

2010-07-08T10:34:00.000-07:00

Susan has been diagnosed with shingles, a nerve-root infection caused by Herpes Zoster, the virus that also causes chicken pox. The biggest problem is the painful sores she's got right now, but they should clear in a few days. There's some risk of a neuralgia that could occur later - nerve damage under the skin at the infection site that causes chronic pain in about 20% of patients.

It's a blessing we were able to get her treated with anti-viral meds within 72 hours of the rash appearing since it may have moderated her symptoms. Her symptoms were classic - painful, non-itchy rash on just one side of the body, headache and malaise, with no fever. The rash is contagious for the virus; but those infected would get chicken pox unless they had them already. Shingles can occur later since the virus lies dormant and may spring to life when some has a weakened immune system like Susan. We're thankful to finally name and treat her condition, ending our current mystery.

She'll have an MRI/MRA scan today since her medical team is concerned about blood found in her spinal fluid that could indicate an aneurism. This scan will also be an early view of her tumor instead of the MRI she would have had in two weeks, so I'm sure we'll have a chat and tumor update in the next few days.

We'll meet with her medical team in a few minutes to confirm the outlook, next steps, and find out when she can come home.

Viral infection?

2010-07-07T13:18:00.000-07:00

You know you’ve been in ER a long time when you get acquainted with your 3rd shift of doctors and nurses. After over 30 hours in an ER isolation room, Susan finally was admitted upstairs under the care of the internal medicine team, also in isolation until they understand the nature of her illness. While we’re thankful she apparently does not have another case of fungal meningitis, they’re treating her for a viral infection until they can rule it out.
This hospital episode has been more puzzling than others, since usually we’re able to diagnose a problem (hydrocephalus, infection, hemorrhage) pretty quickly and begin treating it. This one’s a mystery and has some new elements. While she had some symptoms of meningitis like head and neck pain, she lacked a fever and severe neck stiffness. We’re still waiting for the fungal cultures of her spinal fluid; but the low white blood cell count indicates no infection there. She does have a solid urinary tract infection; but that alone should not cause persistent headache.
Susan complained of a sore scalp on the back of her head and neck beginning on Saturday – painful, not itchy. I noticed the skin there had become red on Sunday and had developed rashy sores on Monday. The rash is now the focus of the mystery and is assumed to be an effect of a herpes simplex virus until a culture taken last night can be completed. Meanwhile, she’s feeling okay and is getting pain meds when she needs them. People rightfully get concerned when there’s an ER/hospital event; but this one’s not critical or getting wonky. I expect we’ll understand the problem soon and will be able to finish treatment and get her home in a few days. As always, we know Susan’s big issue with GBM and her many complications are in God’s hands as we ask him for healing and pursue medical treatment. Also, we’re thankful to each of you who support us with prayer and expressions of care.

Still in ER, still testing

2010-07-06T12:12:00.000-07:00

We had a long night in ER and are waiting to transfer to a bed upstairs and for test results to confirm a diagnosis. Susan is stable - she has pain and fatigue, but times of alertness and good spirits after resting. She became dehydrated and is receiving fluids.

She's had a CT scan (looks okay), blood and urine tests, and endured a marathon 1 1/2 hour spinal tap at midnight that would earn the respect of a maple syrup farmer. And she thought I was a drip.

Early spinal fluid results seem to rule out bacterial infection; but fungal results take longer. Urine was positive for a significant infection they're treating with IV antibiotics. If meningitis is ruled out, Susan could be dealing with a combination of the UTI and diabetic issues. That's it for now. We're confident in the Lord she'll improve with the right treatment and are grateful for everyone's support and prayer.

Meningitis again?

2010-07-05T18:20:00.000-07:00

We're admitting Susan to ER at UCLA with persistent headache, stiff neck, confusion, and some sensitivity to light. No fever. As many as 4 Vicodin in six hours didn't relieve her pain. Her neuro-oncologist suggested we go to ER to check for meningitis, given her history.

Susan now has a lovely new bracelet. We know the drill and expect to wait a while for tests. We're glad Susan has her port for easy IV access, and we have our Lord who's with us in all things.

Steroid-induced diabetes

2010-07-03T15:33:00.000-07:00

After three years on Decadron, the steroid commonly used to prevent brain swelling, Susan has been diagnosed with diabetes. I think this completes her collection of Decadron side effects, following weight gain, moon face, muscle loss, swelling of extremities, and bone disease. As much as she’s needed it to prevent too much pressure in her brain, she’s needed to be rid of it for obvious reasons.

We’ve tried to taper her from it completely at least half a dozen times only to have a complication occur that requires a full dose again. She was completely Decadron-free for only about two weeks a couple of years ago before she had some tumor progression and needed 4mg daily again. She’s had as much as 16mg daily during major events like a hemorrhage, but has spent most of the time in the touchy sub-2mg zone. Quitting cold-turkey could be deadly since the body’s own steroid production ceases when the manufactured stuff arrives. A slow taper allows natural chemicals to reappear, but requires weeks at a time at each level. Susan was down to 0.5mg every other day when the stress of her kidney stone erased several months of progress and bumped her back to 2mg daily.

A routine blood test on 6/23 to check her platelet counts revealed her glucose was soaring at 405 mg/dl, about four to five times the normal level of 70-110. The next day a nurse practitioner at UCLA suggested Susan see a doctor immediately out of concern for ketoacidosis, which can occur above a glucose level of 240 when the body’s inability to absorb sugars leads to the release of ketones that become poisonous. We went to urgent care for more blood tests – Susan’s glucose had jumped to 435. I learned the symptoms I’d begun observing unawares were classic ones: dehydration, cotton mouth, frequent urination, and fatigue. She’d had to stop five times to catch her breath as we walked to the lab parking lot the day before. Thankfully, she responded to an insulin injection at urgent care and did not need to be hospitalized.

Catching this new problem on a previously scheduled blood test was divine intervention, since we were preparing for Susan to travel up north for a week with her parents and our family. The thought of her getting mysteriously and progressively ill while removed from her doctors and me by an eight-hour drive is not a pretty one. Thanks to God, we caught it early. We followed up with her primary care physician on Monday after she began an oral med called Metformin, took home a blood sugar monitor, and met yesterday with a nurse and diabetes educator. We’re told this steroid-induced Type II diabetes may be reversible with lower doses of Decadron (again!), specialized diet, and weight loss. We’ll do our best.

A three-year brain tumor survivor

2010-06-23T20:17:00.000-07:00

Susan remains strong and stable prior to her next tests to update the status of her brain tumor and kidney stone.

June 26th marks three years since we discovered Susan’s brain tumor, an anniversary laden with paradox. As a glioblastoma multiforme patient, she has surpassed a life expectancy that averages only about a year from diagnosis. That’s a fact too obvious, since we’ve known four friends and one Massachusetts senator who have succumbed to high-grade brain tumors since our journey began. Susan has beaten the odds. Yet with just 10% of GBM patients surviving more than five years, we wonder what the future holds.

Why is Susan is a three-year survivor? Is it that at age 46 when diagnosed, she was younger than average and better able to rally her strength? Is it that she had access to surgeries, medications, and treatments when she needed them along with world-class care at UCLA? Is it that her type of tumor has a mix of cells that responded better to treatment than others? Is it that she’s got an unquenchable positive attitude? I'm encouraged by these comments in a NY Daily News article:

While new findings continue to extend the lives of patients with glioblastoma, for the moment, it remains one of the most dreaded diagnoses. For those who receive it, putting up a fight against the tumor may help.
“If you go to the Internet and do a search on outcomes in glioma, everyone will call it a terminal illness,” Dr. Henry Friedman, co-director of Duke’s brain tumor center, told the Times. “Your outcome is ‘dead on diagnosis.’ If you don’t have the philosophy that you can win, you have lost before you started.”
NY Daily News 09/01/09: Glioblastoma

While there may be a number of reasons Susan is doing well, ultimately we see God's hand at work. He's keeping us. It's just a mystery. We come to the end of three years with no conclusion – except that Susan has survived this long. Even the term “survivor” can be troubling. Was Ted Kennedy a brain cancer survivor for 14 months until he died a month later?

Paradox enfolds our spiritual perspective as well. We are burdened, but not broken down. Fear attends, but God’s perfect love forces it to the margins. In turmoil, we've received peace. Our weakness has been overcome by God’s strength; our vulnerability covered by his faithfulness. Yet while God is able to heal Susan from GBM, he has not. Suppose he does? A Susan healed from GBM will eventually die from something else.

Through this paradox, a force drives us. Susan is driven to be gracious, enduring, and hopeful as she strives to live. I am driven to care for and encourage her, to declare her a survivor, and to try to make some sense of our situation for our sake and for others. Three years ago, we were driven to acceptance almost immediately and found the load lighter. We were driven to behold the darkness and void, and realize it has not been given any power over us.

We are compelled to complete this season of testing, whatever the outcome of Susan’s disease; to see it not as an affliction but as an experience with God. As for me, I knew I was in for a time of testing. This was a test of faith I must pass. Do or die.

Honestly, I have failed wildly. But even wilder has been learning my failure was for my benefit, not God’s. My weakness is no surprise to him - but I needed to see it myself. In terms of spiritual currency, I’m broke. I’m so broke, sometimes I can’t even pay attention. But now, in my brokenness, comes the greater part of the test – testing God. The paradox deepens.

Who is this God who flips a season of testing so he's the one on trial? Who is this God who decides in advance to bear with his fragile children so we can come to terms with our weakness, which itself is the key to knowing his strength? Who is he, secure enough in the outcome that he's willing to allow a messy process to play out? When everything's gone wonky, we're laid low. Now God can get our attention, help us know he's near, and communicate deeply to our souls about his true nature.

It’s exactly when your courage is sapped and you feel alone that you can know the God of Deuteronomy 31:8, “The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
Seeing you’re awash in peril yields the real power of John 16:33: “In this world you will have trouble. But take heart! I have overcome the world.”
It’s natural to tremble in the face of death. In that darkness, an ancient enemy looms and would overtake me. But when I notice God is there and he’s relaxed enough to “prepare a table before me in the presence of my enemies” (Psalm 23:5), then I am at ease too. God himself becomes my confidence.

To be serene while facing death almost makes no sense. To be joyful in hope with brain cancer is a bit of a contradiction. To be confident in one unseen who’s waiting at the end of a journey marked by pain, loss, and uncertainty is actually understandable when you know who's really there. At three years, we’re growing more comfortable with the mystery.

Stable tumor and a kidney stone

2010-06-06T15:57:00.000-07:00

Last week found us back at UCLA twice, first on Wednesday for Susan’s scheduled MRI and oncology visit. Thankfully, her brain tumor is stable once again; the scan showing only minor changes and nothing to indicate tumor growth. Dr Nghiemphu extended her next evaluation from six to eight weeks. The watch and wait phase continues.

We returned Friday for Susan’s abdominal CT scan and confirmed she has a 1.4cm kidney stone. We met with two urology associates, Drs Brison and Schulam, who outlined our options for treatment. Since the stone is fairly large, we focused on the middle-of-the-road treatment called uretoroscopy, where the doctor inserts a scope into the ureter and kidney to break up the stone with a laser and gather the pieces for removal. We ruled out a lesser treatment of external shockwaves that would pulverize the stone but leave pieces perhaps too big to pass, and will also avoid a more invasive surgical treatment the doctors think would be overkill.

Still, the uretoroscopy requires several treatments at two-week intervals and leaves a drainage shunt in place that can be irritating and uncomfortable. Dr Schulam demonstrated great compassion in asking Susan how she’s holding up with her complicated health situation. He was open to defer treatment in case she’s weary or overwhelmed. Susan, ever the gracious fighter expressed her willingness to proceed with, “Well, you have to do what you have to do.” But given the likelihood of having to endure six weeks of shunt discomfort when the stone may not present any real trouble, Dr Schulam recommended waiting until mid-summer, getting another scan, and tracking any changes. Meanwhile, if the stone blocks her urinary tract and begins to cause infection we’d know right away by the onset of persistent pain and would do the procedure at that time. We felt comfortable with this approach; and I like the idea of giving Susan a respite from treatments so she can get stronger. Meanwhile, we pray for her overall healing and restoration of her body.

When they do the uretoroscopy to zap the stone, they’ll also do a routine check of her bladder for cancer or other disease, a customary practice that kills two birds with one stone while getting another stone out. I knew I could work that line in there somewhere.

Kidney stones maybe and Peace definitely

2010-05-28T11:03:00.000-07:00

One of Susan’s most persistent complications has been infection, from the fungal infection that caused meningitis to the various bacteria that have affected her urinary system repeatedly. The return of proteus last month prompted another course of antibiotics that in the past has knocked back the problem pretty well. This time, however, the infection returned within weeks and got us back to UCLA on Tuesday for an ultrasound to learn more. The radiologist reported a high likelihood of a stone in her right kidney, most likely what’s called a struvite stone that can form due to a proteus infection. Her infectious disease physician said such a stone will continue to cause infection, so it sounds like a vicious loop that needs an off-ramp.

Our next step is to meet with a urologist at UCLA and for Susan to have a CT scan of the urinary tract that will confirm or rule out our suspicions. Judging from her persistent symptoms, the kidney stone idea makes sense. If confirmed, I’m sure the type, number and size as well as Susan’s overall condition will drive a treatment decision; but we’re not ready for that conversation yet. I hope we’ll know more soon. Meanwhile, we’ll be back at UCLA next week for her scheduled MRI and oncology visit to update the brain tumor outlook, hoping at least for continued stability.

While chatting with friends at church last week, we spent a few minutes with two ladies who also have been facing some of life’s great challenges and the portent of change that threatens to follow. One recently recovered from surgery and continues to regain her strength. The other is caring for her husband who’s been battling complications from cancer treatment. We have in common the upheaval of illness and treatment, the challenge of rallying to overcome, and the overwhelming peace of God who helps us. Actually, since each of our health challenges is so different, God’s practical peace is our true bond. Each of us has tasted it, touched it, seen it, and has experienced the remarkable sensation that somehow we’re surviving (even thriving) because of God and his peace. Each of us is learning to trust God more, and we all agreed with amazement that the hard things we’re enduring are the very things that are teaching us to trust him.

Our journey that began with the possibility of Susan having breast cancer in 2005 continues to be one of grappling with mystery. Not the why – we abandoned that dead end a long time ago because the answer is mostly unknowable on earth and is not so important anyway. We’ve grappled with the what and the how. What are you doing, Lord? How shall we respond? The mystery is worth working out because at the center of it is the living, loving, almighty God who desperately wants us to know him, who has resources to meet our deepest need, and who will use any circumstance to get our attention.

Hard circumstances, then, are not a life-shattering trigger for despair but the stuff of life itself – a gift to unwrap and a glorious treasure to discover. It's a weird thought, isn't it? But I’d rather embrace the circumstance, take on the adventure, and find the prize. Why should I fight it out of anger or worse yet, ignore it out of denial? The tragic side of tragedy is to leave the gift unwrapped and God’s treasure unknown.

Last dose of CCNU, and Susan's godly burden

2010-04-28T13:41:00.000-07:00

A blood test early last week determined Susan’s counts had once again improved enough to have chemo, her sixth and final dose of CCNU. I hoofed it to UCLA Wednesday afternoon to pick up the single $35 capsule since I can’t get it filled at our local pharmacy. She took it as scheduled Thursday night along Zofran to prevent nausea. Dr Nghiemphu reduced the CCNU dose to 100mg to balance the drug’s cumulative side effects with the benefit of finishing the full treatment, since Susan’s tumor has been stable since she started taking it last fall.
By Saturday, Susan was noticeably weaker and more confused, but has improved with rest. We’ll return to UCLA in about six weeks for another MRI and oncology visit, followed by what we expect will be our next watch-and-wait phase. Since GBM is progressive, it's likely her tumor will grow again at some point and require some other course of treatment. Meanwhile though, we marvel at how God has kept us so far and we continue to pray for healing.

People who knew Susan before her brain tumor onset but haven’t had much contact with her lately may wonder what she's like now. How much of the Susan they once knew would they still know?

The fact is Susan's been through a major ordeal with major effects. Her continual use of Decadron for brain swelling literally put her appetite on steroids and led to weight gain. The drug also caused muscle loss and the classic “moon face” appearance of many brain tumor patients. Her occipital stroke blinded her right peripheral vision and changed the way she sees color. Prone to falling, she needs someone with her all the time. She needs help to stand, can walk with her cane under guidance, can climb a few steps with support, and needs her wheelchair for longer distances.

Susan’s memory and word-finding have suffered also, turning her expressions into verbal popcorn. Words have become interchangeable. While we’ve always enjoyed being a bit tilted (or at least I have), now the absurd is not always governed by the will. It’s normal for her to call our dog a cat, or to say our son just helped her after Lexie did. Sometimes a thing she just heard gets mixed in with what she wants to say. If we’re watching “24” and she can’t remember if she had dessert, she might say, “Did I already transfer the nuclear fuel rods?” She sighs in frustration when she realizes she’s not saying it right. When I know what she wants, I can clarify it quickly. “Do you mean you’d like a frozen juice bar?” Our routine at home usually makes the detective work pretty easy. The fact that I can figure her out makes her think I’m a hero, which I don’t mind. Her mix-ups sometimes may sound funny to the kids and me, but we attend to her need, never demean her, and patiently encourage her when she feels like she’s not smart.

People who experience brain trauma may experience some personality change. An intellectual type might become more emotional. Another person might become more cynical or combative. Susan has become sweeter. In some ways she's more childlike, sort of like a playful retiree being freed of earlier responsibilities. And she's a bit less inhibited. She likes to sing, especially funny songs, loudly. She doesn't always care who's around. She ends with a particular flourish that’s become something of a trademark. I usually grade her performance, “That was a good one.” She’ll respond smiling, “Thankyouverymuchy.” She enjoys playful banter, reciting lines from movies or classic Saturday Night Live, and repeating silly clichés we’ve come up with over the years.

Clearly, Susan is different in many ways than she was three years ago. But the thing you might not know at first glance is Susan is intact. Although much of her life has become so basic, her soul, her capacity to love, her sense of the eternal – who she is, really – is not only unaltered, it’s enhanced.

I came home one day last year and learned “The Price is Right” is her favorite TV program. You think you know someone. Maybe she was just usually available to watch TV on weekdays at 10am and it was the best thing on. Whatever. We record it now and zip through the commercials to keep our grip on the action uninterrupted. Someone normally wins a showcase at the end of each broadcast, screams, jumps around, hugs Drew Carey, and is swarmed by family and friends. Then they all clamber around the shiny car or boat and wave at everyone while the credits roll.
But on one recent show, nobody won. Both ladies overbid. They had to settle for consolation hugs from Drew while he reminded them they’d still won the TV or Rice-A-Roni. They weren’t jumping around or being swarmed by family, and with no great celebration on stage, the cameras were trained on the waving and smiling models and the waving and cheering audience while the credits rolled. I made my best NBA buzzer sound and said, “Double losers!” Susan didn’t share my amusement. She sat quietly in her chair and said, “I don’t know why this is making me sad. I shouldn’t watch things like this. I don’t like to see them lose. I want everyone to win.”
Her eyes grew teary. I paused the screen when I realized something deep was stirring in her that had nothing to do with a TV show. God can nudge us in the most mundane moments. Somehow, seeing that loss on a game show moved Susan to feel burdened by people not reconciled to God. “If they only had what I have, what Jesus has given me – if they only knew what Jesus has for them.” Wow, holy ground, in our den. I tried to comfort her, “I know it’s hard to see people who are lost.”

“I just need a minute. I’m just sad.”

The things Susan says can be unpredictable and sometimes awkward. I certainly wasn’t expecting a profound spiritual moment during a game show. But it’s a beautiful thing to have your heart touched by the things that move God's heart; and Susan’s capacity for that seems to be deeper now. Compassion is God’s gift that compels people to act on his behalf to extend the goodness of his kingdom. I wonder if those who don’t know Jesus yet have any inkling that the Living God and those he inspires are laboring over their salvation.

I doubt we would have had this moment apart from Susan’s present condition. I’m sure we’d be encountering God in other ways; but this one suits me just fine. Susan has endured great loss and still faces a deadly disease; but with God’s peace and hope, we’re doing okay. She is rich in spirit and is as vital as ever. We’re connected in ways that only her brain tumor circumstances could have allowed. Having God’s presence and protection in the face of destruction is amazing. It reminds me of his promise in Psalm 91:7, “A thousand may fall at your side, ten thousand at your right hand, but it will not come near you.” We stand on these words of life!

Clearing infection, stable scan

2010-04-18T18:31:00.000-07:00

Susan’s lab tests early last week were positive for a urinary tract infection, explaining her recent slump. We coordinated with her infectious disease physician, who meets the highest standards of care we've come to expect at UCLA, but is someone we’ve come to know too well over the years. He prescribed an antibiotic that seems to be working well, given Susan’s gradually improving symptoms. We’re relieved to learn there wasn’t something more serious afoot since a UTI is relatively easy to knock down.

Wednesday found us back at UCLA for Susan’s scheduled MRI scan. Gratefully, her tumor is unchanged once again, so the CCNU evidently has been working. We had an unhurried visit with her oncologist, Dr Nghiemphu, discussing plans for her steroid taper, the possibility of having chemo next week, and her treatment schedule once we’re done with CCNU. Susan’s recent series of blood tests show her platelets are low and trending lower, so she went for more labs on Friday. If her counts improved, she may have her last dose of CCNU next week; otherwise, she'll be done after five doses.

Susan spent an extra hour in the MRI scanner on Wednesday for a research study using MRS, or magnetic resonance spectroscopy. This is a term that can make you feel really smart for a moment while you say it. The sample of her brain tumor tissue taken in 2007 shows she has a genetic mutation that occurs early in the formation of brain tumors and seems to indicate a positive response to therapy and positive prognosis. Susan’s neurosurgeon and neuro-oncologist asked if she would participate in their study since they’re searching for a non-surgical way to detect this genetic alteration in others during the early stages of brain cancer treatment. They know she has it, so they’re experimenting with MRS hoping they can see it. This extra scan not only was useful in their research it was a useful complement to Susan’s PET scan last year that will help the neuroscience team know more about her tumor.

We’re thankful as ever for good MRI results, great care on all sides, and for God’s never ending faithfulness for us.

More breathing room?

2010-04-11T13:45:00.000-07:00

The past several weeks have provided more breathing room for Susan and me as we enjoyed an unforgettable 25th anniversary stay in Laguna Beach, more time without complications, and even a trip for her to Mammoth this week with family. Our brief stay in Laguna offered pristine springtime weather, hours spent on the hotel balcony entranced by the seaside panorama, and a chance for Susan to have her feet in the sand again. Our 9th floor room brought us eye-to-eye with seagulls and was a perfect perch to watch pods of dolphins, surfers, beach walkers, crashing waves, and even a couple of migrating gray whales. An epic weekend would not be complete without a Jacuzzi bath for Susan (years since the last one) that rejuvenated her.

The weeks since then found us resuming Susan’s blood draws leading up to next week’s UCLA oncology visit, gathering with some of my friends from high school, celebrating Good Friday and Easter with our church and our family, and getting Susan, Lexie and Adam away to Mammoth with the Rombergs. Austin spent Easter vacation working on a mission trip to an American Indian community in Arizona. Although the road trip was a bit taxing, Susan did well in Mammoth and had a pretty smooth week. Lexie made me proud by taking great care of her mom and working hard to make sure she stayed safe. I put in some longer hours and was able to focus on my work more than usual, although I missed everyone, Susan especially. Even so, I can attest to the value of respite for the caregiver. My time with her following our break finds me more relaxed and patient, armed with a deeper well of compassion and a better perspective than I had a week ago.

But Susan hasn’t been doing well this weekend. She’s tired, confused, and generally out of it. She’s had several spells of nausea or vomiting at mealtime, so I’m on the alert for more signs of trouble. She’s been headachy but has no fever. After a couple of long naps yesterday, she seemed a bit better last night – yet the nausea returned this morning as we prepared for church. I’m keeping her home to rest and will continue to watch her closely in case there’s more going on than just the effect of traveling and altitude.

Our Silver Anniversary naturally leads us to reflect on our lives as a couple and celebrate the gift of spending most of our years on earth with each other. It’s a unique experience. Spending a lifetime as husband and wife is different than being with a friend, companion, parent, or sibling. Why? Each of these relationships has a certain level of familiarity, compatibility, trust, and common interest that creates a bond deeper than a casual acquaintance. But marriage goes deeper still, involving a level of physical, emotional, and spiritual intimacy unlike any other relationship. In the most significant way, it satisfies our human desire to know and be known. This is what God had in mind for us and is what Jesus spoke of in Mark 10:7-8, “’For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh.' So they are no longer two, but one.” This is the gift Susan and I have enjoyed so far for 25 years.

I’ve said before that Susan is probably the most gracious patient on the planet. She has needs but does not make demands. She hates the thought of being a burden and apologizes when she feels she imposes on others – which is frequently. Her attitude compels her to try to do as much as she’s capable of doing and just makes it easy to care for her. Her positive outlook prevails. She’s confident today is better than yesterday, tomorrow will be better still, and God will fix what’s wrong either while she’s alive on Earth or when she’s with him in Heaven.

Yesterday when I told her I love her like crazy, she said she’s not sure why since she’s not able to do anything. She said she can’t love me very well. I assured her our love is not about doing, and that she loves me perfectly. I know and feel her care for me in whatever way she expresses it. But more than that, just her being with me becomes our unity and is itself the expression of our love.

A mild lapse, but improved again

2010-03-16T17:37:00.000-07:00

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

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

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

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

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

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

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

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

Good results again at UCLA

2010-02-25T17:33:00.000-08:00

We’re thankful once again for tumor stability following Susan’s MRI and oncology visit yesterday. Dr Nghiemphu showed us several areas on her scans that indicate the tumor is unchanged, although we could still see last year’s blood clot as well as increased scar tissue compared to prior scans. The blood clot may not completely disappear even though it’s much smaller than after the hemorrhage in early 2009. The scar tissue may be the result of surgery or, more likely, Susan’s radiation treatments in 2007. Neither the clot nor the scar tissue seem to be a big issue. We’re glad the tumor has remained stable.

Since her blood counts have not fully recovered from January's chemo, we’ll wait a week and get another blood test before proceeding with her 5th dose of CCNU. Her platelets did double to 85k from the low we saw in week 4, but they need to be much higher. We’re also monitoring white counts and liver function that have become cautionary. All told, this may be her last dose of CCNU since we’ve had to lower it by 20% the past few cycles and going much lower becomes ineffective against tumor growth. Dr Nghiemphu said a full treatment is six doses anyway – and we’ll be getting most of it on board. After that, we'll wait and watch.

We’re making another run at getting Susan off steroids, and will reduce her Decadron from 2mg to 1mg every other day as long as headache doesn’t become a problem. We enjoyed another lunch at Jerry’s Deli in Westwood after Susan’s appointment courtesy of some loving friends. We remain ever grateful for God’s faithfulness and for the support and care we receive on all sides.

Waiting for improved blood counts

2010-02-21T15:13:00.000-08:00

Out of a busy couple of weeks at my office and an uneventful span at home, here's a brief update. Susan has continued to do well in general – but the platelet count in her blood has trended lower again in recent blood tests. Her platelets at week four were at 58k, while last week at week five dipped to 42k. The normal level needed to resume chemo is 150k; and the danger-low level that can lead to spontaneous brain hemorrhage is about 10k or less. She rebounded on her own prior to her January chemo; and will have another blood test tomorrow in advance of her Wednesday oncology visit. If her blood counts look good, we’ll proceed with chemo on Thursday. Otherwise, she may need a transfusion. We’ll see. I’m also eager to see her MRI this week and hope for more tumor stability or, Lord willing, shrinkage.

We’ve had several highlight moments in the past several weeks, including the morning of Valentine’s Day when I gave Susan her card and read it to her. When I choose a greeting card, I usually know at a glance whether it’s the right style. I don’t need to read every word to know that it fits and doesn’t have a lot of syrup. This card was no different and went into the cart along with the week’s groceries. But when I read it to her, I was struck by the meaning of its simple message – that I love how good we are together, partners and friends who are there for each other no matter what. As my mouth formed the words, I was surprised how it so sincerely captured a truth about our relationship – that what I love about us is that I get to be “us” with her.
Susan reacted immediately, saying she had a tingle-feeling when I was reading. We both shared our love for each other as we embraced with tears. I love that after losing so much in Susan’s abilities and in our lives, we continue to gain in affection for each other. I love that after 25 years, our marriage is mature and full; and that one partner’s inability to buy a gift or plan a surprise doesn’t leave the other one feeling needy or resentful. We had a beautiful day together and with family. The best thing? I asked Susan, “Willst thou be my Valentine?” She said “Yes, I willst."

One recent low point came as I finished helping Susan in the bathroom and she slumped over in weary frustration. She cried as she thought of her condition and said she’s tired of it all. Thankfully, Susan doesn’t often feel defeated this way. I tried my best to comfort her. I can’t fix it. I can’t change it or make it go away. But I held her close and assured her I’m with her. We’re together.

In contrast, at one recent bedtime Susan said God is getting everything ready; and everything’s going to be so much better than it was before, whether it’s while she’s here or when she’s in Heaven. Her confidence and peace come from a place deep in her spirit that is unshakable, part of her foundation of faith the Lord established in past generations and strengthened in her lifetime. The quality of the outcome is assured even while the nature of it remains veiled in mystery.

Continued stability

2010-01-26T13:19:00.000-08:00

Susan has been doing well following her fourth dose of CCNU chemotherapy after waiting a week to see if her blood counts improved. They did, so she took her chemo pills at home on January 14. She was moderately more tired last week, but came through without nausea or vomiting. She takes Zofran for a couple of days after chemo to prevent nausea that seems to do its job well. The next side effect to watch will be in mid-February when she resumes weekly blood work prior to her next scheduled exam and chemo toward the end of the month. Drugs like CCNU tend to knock back the body's vital blood cells 4-6 weeks after having them; and each cumulative dose makes it harder to bounce back and raises the possibility of needing a transfusion. The complimentary alternative treatments she has three times each week with our chiropractor may be part of the reason she's holding up well so far. Dr Jim Augustine provides her with bio-cranial adjustments and electromagnetic pulse therapy; plus she takes daily supplements to support liver, brain, and digestive function.

We are grateful this continued period of stability. This week marks one year since Susan's brain hemorrhage and her last hospitalization. This is by far the longest period of time without a hospital stay since she was diagnosed over two and a half years ago. Having twelve months without a major medical event and its atrophy of inactivity has helped her gain vital strength. We also know many people continue to hold us up in prayer. We are ever aware that God is keeping us in his care.

I chatted briefly with a patient I met at the chiropractor's office who apparently is familiar with Susan and asked me how she is doing. I said she's under continuing treatment for a brain tumor, but she's hanging tough and doing pretty well. At times like this I try to reflect the realistic optimism we've adopted. I do not choose to speak from gloom, that she has a malignant brain tumor with a two-year average life expectancy and a 100% eventual mortality rate. Nor do I choose to convey a false cheeriness that God will heal her since we know he can, but don't know if he will. That's a lot to blurt out, but it's contained in my response – yes, brain tumor; and yes, okay. But the kind man wanted to know more. How are WE doing?

I shared that we are doing okay, really. We are Christians and we trust the Lord. Yes, we trust the Lord he conceded, but what are we doing? I asked the kind man what he meant. He wanted to know if we're doing everything we can, pursuing every treatment – did we know about Dr Burzynski in Houston? I said I knew about Burzynski's claims and some of his successes and controversies. Ultimately, Susan was not eligible for his clinical trials since she'd already had surgery and radiation. The kind man wanted to know why surgery didn't fix it. I spoke of tendrils and aggressive brain cancer – it grows back. Then he said his wife had died of cancer eight years ago, and I understood. He couldn't fix it for his wife. He said you think you're ready for it, but you really can't be. The kind man still grieves.

I had to go help Susan from the treatment room, so I assured him we're pursuing every medical option available to us, and we also trust the Lord with our lives. We just do. Every day is a gift. Peter writes about living in "the tent of this body" (2 Peter 1:13) and receiving "a rich welcome into the eternal kingdom of our Lord and Savior Jesus Christ" (2 Peter 1:11). If we did not own that perspective, I'm pretty sure we'd be living in despair. So we continue to hope for the best, and in faith we are ready for anything. For now, God is keeping us and giving us his precious peace.

Some chemo effect and tumor activity

2010-01-08T10:35:00.001-08:00

In spite of her generally stable condition, Susan's latest round of tests revealed a few areas of concern along with some recently increased headaches. The first of three blood tests beginning the fourth week after last chemo showed her platelet count dropped to 15% of normal, nearly low enough to require a transfusion. Since platelets are a clotting component, the risk for Susan would be another hemorrhage or spontaneous bleeding in her brain. With these results arriving when her week 5 test was due, I took her to UCLA on Dec 30 instead of a local lab so we'd be in place in case she needed a transfusion. Fortunately, her platelet count had reversed trend and doubled, although it still was too low to resume chemo at that level.

We returned to UCLA this Wednesday for her week 6 labs, MRI, and oncology visit. While the good news was that her platelets that had rocketed back to 100% of normal, her white cell count took a hit from the prior week. White blood cells are immunity soldiers that combat infection, so chemo remains on hold this week. These blood-count hits are the result of three doses of CCNU chemotherapy since September, although the effects actually occurred a bit later than expected. (My Susan is a strong woman.) She'll have another blood test next week to see if her counts have recovered enough to resume chemo. We have the pills at the ready.

Her MRI showed greater contrast compared to her two most recent scans, a sign that tumor activity has increased a bit – but thankfully not a lot. Dr Lea believes continuing CCNU will be effective for now and has other treatments in reserve when needed. The scan also showed increased brain swelling, explaining Susan's more frequent headaches. The doctor thinks it's caused by our attempt to reduce her steroid dose since last time, so we're bumping her back up to the nominal 2mg Decadron daily and will leave the taper fight for later. We remain thankful for the excellent care at UCLA and for Susan's continued stability overall.

I corresponded this week with a former co-worker who is also a Christian and in her own battle with advanced breast cancer that has spread to other parts of her body. The way she's holding on to hope in God stirs my admiration. I noted the remarkable similarities between Susan and her. Each has had several courses of treatment for life-threatening cancer, each is presently stable but medically incurable, and each is committed to wait on the Lord in faith. I did my best sum up our state of mind and spirit since Susan's GBM diagnosis 2 ½ years ago:

"Also like you, we trust the Lord with our lives and the outcome of this journey. We've learned that in spite of our troubles God still is good; and in fact his faithfulness is what sustains us. We've discovered the preciousness of suffering that allows us to appreciate the gift of life each day. What power do we have anyway but what God gives us? On one hand, we know what he is capable of doing. Healing from cancer is not a problem for God the Almighty. Yet we also live in a fallen world with the mystery of his will and accept the best plans of God the Sovereign. So, we pray and ask for healing, pursue every medical option, and take each step as it comes. We trust God completely, are hoping for the best, and are ready for anything. Ultimately, heaven will be a much better life for all of us!" This world is not our home.

Great comfort at Christmas

2009-12-17T00:50:00.000-08:00

One amazing thing about traveling the road of hardship is how frequently you find hidden treasures on familiar ground. Susan's brain tumor journey is hard. It truly is a matter of life and death with its ultimate outcome waiting in one of two places – healing (and Heaven later) or Heaven directly. Since we are confident in the goodness of God, we're also confident in the goodness of the outcome he has in store for us, which ever it may be. But in the meantime of uncertainty, there's work to be done, discomfort to push through, fear to cast out, and doubt to dispel, all in the context of Susan fighting brain cancer as her loved ones do what we can to help. The journey yields rewards in faith and character that will have lasting effect. But still, it's hard. Our hope for a better day in the future is what sustains us.
Just when we need the inspiration, it's just like God to provide an example for us in the Christmas story I've heard hundreds of times. One major theme is the humble nature of Jesus' birth – poor, quiet, and isolated, so out of place for the King of Kings. But defying expectations was normal for Jesus. He fulfilled Messianic prophecies to the letter but was not the political ruler most people expected. Focusing on doing the will of his Father, he bucked a religious establishment steeped in legalism. Embodying the authority of the Creator, he challenged the government who feared his power and envied his allure. Ultimately, these religious and political leaders converged to bring charges that resulted in Jesus' execution on a cross. So the life of Jesus that confounded most observers came to a perplexing end. But far from a failure, his 33 years on earth were just the first phase of a divine plan implemented at God's great expense. Jesus succeeded in revealing God's heart to us and offering salvation by his death as atonement for our sin. Even the greatest skeptic cannot ignore the impact Jesus has had on human history, affirming it with every check written this month – December, 2009 AD.
The treasure I found on familiar ground this Christmas? I realized God himself has done just what we're doing – enduring the hardships of this broken world and delaying gratification until a better day arrives. Right now we live between the advents, after Jesus' first coming and before his second coming. But his second coming will not be humble like the first. Next time it will fit the King of Kings and will be a game-changer, as overwhelming in power and majesty as his first entry came in mystery and obscurity. If his first episode with us in bodily form was costly, sacrificial groundwork, his next will be triumphant dominion. Isaiah 45:23 and Romans 14:11 say it well: "Every knee will bow." Along with the fullness of his kingdom, Jesus will receive the reward he's been waiting to collect – the people he came to save. I don't know what's more amazing, that he's so crazy about us he would go to such lengths to give us eternal life, or that he's so patient he'll work his plan for thousands of years to get the greatest harvest. Either way, God redefines the term "delayed gratification." His patience provides an astounding contrast at Christmas when time seems compressed, buying and consuming become frenetic, and we reduce ourselves to the instant pleasures of getting, having, tasting and doing.
Back to the brain tumor journey – we're still on it. There's no fast forward. We live each day with the weight of a hard situation. So do other cancer patients, farmers with drought-laden fields, the unemployed, the dream-deferred, and so on. This is the stuff of life. But God knows all about it because he's walked in our shoes. He draws close with true empathy and whispers a promise, laced with comfort: "Everything's going to be okay. You can do it. I will help you. Just a while longer..." He knows what it's like to wait.

Hanging tough in brain tumor world

2009-12-11T12:29:00.001-08:00

Susan's condition has remained stable over recent weeks with some improvement in strength. Although she needs full-time care and assistance to walk and accomplish daily activities, she can more easily lift herself from an elevated chair and handle small stair steps. We're so grateful to enjoy another period without complications, infections or hospitalization. More importantly, I'm amazed at Susan's attitude and outlook, and her tenacious inner strength. She's gracious when needing help, positive that she's doing better today than yesterday, and usually ready to kid around and be sassy. On Sunday as we were leaving between church services, our friend Randy drove up the crowded aisle and asked if he could have our parking space. I shut her door and I joked it would cost him five dollars. I got in the car and told Susan about it. She said, "That's good. You gotta get 'em when you can."

Every Christmas I look forward to when I once again realize the magnitude of God's gift to us in the birth of Jesus. Sometimes it's in a scripture, or in a song; in prayer or in hearing a sermon, or in a God-breathed human encounter. I'm still soaking up this year's moment. Todd VanEk had a word in his sermon Sunday on Luke 2:12 where the angel says to the shepherds, "This will be a sign to you: you will find a baby wrapped in cloths and lying in a manger." Everything about this announcement shattered people's expectations about the coming of the King of Kings. The news was given to shepherds, who were poor and marginalized. The King was a baby – weak and dependent, clothed in rags, and lying in a feeding trough for livestock. The urine and manure may have been at a safe distance, but the smell wasn't. Then Todd brought the zinger. Jesus was born into a mess. The "sign to you?" There is no human mess Jesus is not willing to enter, bringing healing, strength, grace, and mercy. Wow. That was it. That's the room in my heart I could prepare for Jesus this Christmas, and he came right in.

I was not prepared for the living example of Jesus' love that would follow just minutes later, after church. The woman sitting in front of us with an infant turned out to be our friend Patti. I did not know she and her husband were expecting. We learned they stepped in as parents of their relative's baby boy after he suffered abuse and broken bones in only the first six weeks of his life. He's nine weeks old now. They've had him for three, and are willing to adopt him if the legal arrangements can be made. For now, these 30-something Christian parents are adjusting their lives, their family, and their careers to make room for another baby boy born into a mess. This is selfless love – astonishing and familiar. It's a fitting display of God's Kingdom that arrived on Earth with baby Jesus in Bethlehem. As we prayed with tears, I could see the Spirit of our Savior bringing healing, strength, grace, and mercy to this baby and to this family – just like Jesus has always done. I'm so glad to have met him again.

Thanksgiving

2009-11-26T18:48:00.001-08:00

Today we are thankful for family and friends, our country that sets aside a day to be thankful, and our God who loves and cares for us so well. We are thankful for Susan's oncology visit yesterday and another good report. Her MRI once again showed no tumor change and a smaller blood clot than six weeks ago. An area near the tumor lit up more than usual with the contrast agent; but Dr Nghiemphu believes it's due to Susan's lower dose of Decadron, the steroid that counters brains swelling. We will continue her slow Decadron taper, cutting her 2mg dose in half every other day. Susan's blood counts look okay, so she's cleared to have her third cycle of CCNU chemotherapy tonight – quite the Thanksgiving dessert.

Overall, her condition has improved slightly. She has better strength from more consistent therapy with Cynthia, although she still needs lots of rest, needs an occasional recovery day, and struggles with word-finding and vision when she's tired. Also thankfully, she still enjoys being sassy and threatening me with bodily harm if I don't treat her well.
We are thankful for glorious Thanksgiving services this year at church, celebrating the God who has given Emmanuel a rich heritage, an exciting mission in the city, and a promise-filled future. We heard amazing stories of grace, salvation, and transformation from new and long-time Christians alike. We were drawn into rich worship with the worship team and 80-voice choir, once again solidifying Thanksgiving as my favorite church service of the year. Each year as we reflect on the service over Thanksgiving dinner, I wonder how next year could be any better. Somehow, the next one surpasses the others. God is so good.
This morning as we were getting ready for church and Lexie's radio carried Christmas music throughout the house, I recalled hearing recent complaints about Christmas decorations and music invading too early, even closer to Halloween than Thanksgiving. No one can deny the commercial side of Christmas and the hollowness of the holidays when reduced purely to profiteering. But what struck me this morning was the joy of the music, pent up for 11 months, once again arriving to remind the world God sent his Son to bring life and hope to a people trapped in darkness. This Christmas, may he find a place to abide in every heart.

On comfort

2009-11-19T22:19:00.000-08:00

Reflecting on the THING we've been living with for 2 1/2 years:

Oh Lord, what comfort do I have on earth besides you? You have saved my soul.

Apart from you, the stress and sameness of daily life would be pure drudgery. What would be the value of my work if that's all there is – work? Even the things I buy with the money I earn lose their appeal. That once-new car already looks shabby.

I could spend lots of time and money to make myself look marvelous. Maybe that would make me feel good. I could work out, buy expensive clothes, support the cosmetologists, and even go under the knife. But could I stop the decay at work in my body? That once-new car and I are in good company.

Without you, Lord, my heart would be pierced when the doctor tells me I'm at death's door. A good doctor might help me out of a crisis. I might go on living for a while, years maybe, but could he keep me out of the grave altogether? Either he or I will get there first. And I would despair if I thought I would cease to exist. All my life I've been connected to family, friends, my neighborhood, the beauty of this world. What if I were cut off? Disconnected forever? How could I bear the thought?

But you, Lord, offer comfort like no other. You play by different rules. I may work hard and struggle with drudgery; but you assure me a better life awaits me in heaven. I may grow old over time – and look it. But you remind me that true beauty goes beyond appearances, and you reveal time in light of timelessness – my inheritance. And when it comes to sickness and dying, you are the Great Physician. There's nobody like you. Who else could tell me not to be afraid and then give me true peace? Who else could offer me eternal life and back up the promise? Now I have a different viewpoint. My huge troubles have become harmless thanks to you. What comfort do I have in this world besides you? You have saved my soul.

A transitional week

2009-11-09T21:35:00.001-08:00

Susan resumed the help of a full-time, paid caregiver last week after months of having weekday care by our amazing network of friends and relatives. As her physical demands have increased recently, we had Cynthia from Sheridan Care come in three mornings a week. Then with concern for everyone's safety, we expanded it to five full days. These are days of living on grace – the grace of volunteers who helped Susan so well again for months, and the grace of Susan's parents who are providing the full-time care. I'm also grateful to our sister-in-law Dorothy, who worked hard organizing the volunteers amid lots of schedule changes. Cynthia emigrated from Belize in the 1980s and brings a terrific balance of expertise with a light-hearted nature and Caribbean accent. True to our experiences with Sheridan Care, her intense focus on Susan's needs gives me great peace of mind. They hit it off during a brief stint a year ago, so Susan enjoys having Cynthia's help again.

People often ask how Susan is doing with the complications she's had along with her brain cancer treatment. Tumor-wise, the one MRI she's had since starting her new round of chemo this fall showed no change, so no growth is a good thing. Her next scan and oncology visit will be Thanksgiving week. Regarding January's brain hemorrhage, the blood clot and its effects have continued to shrink. Also, she's had no infections lately, no build-up of fluid that leads to hydrocephalus, and no brain swelling. Each of these has been a serious issue in the past, so it’s a relief to have them laying low. We have begun tapering her off of steroids again, ramping down from 4 to 3mg of Decadron in October and migrating to 2mg per day this week.

Susan’s vision has been troublesome since her occipital lobe stroke in 2007. Aside from the miraculous event that summer when her ability to see color was restored during prayer, her right-side blindness persists. After she complained that her eyesight seemed to be getting worse, we ordered an MRI of her eyes and optic nerves in September. Thankfully, the scan ruled out any tumors or other physical damage in those areas. Our next step was a visit last week with her optometrist, Dr Eric Ikeda. During the exam, Susan had considerable difficulty with aphasia (word-finding), something that happens frequently. It seemed like every letter on the chart was an X. Unfazed, Dr Ikeda continued the exam using other techniques and gave us good news – her vision itself is not damaged. She's had some visual change since 18 months ago, but only what's normal for her age and not enough to require new glasses.

Susan’s aphasia and Dr Ikeda's neurological specialty provided insight for us. When she has trouble seeing something, it's partly because her brain struggles to attach the right symbol or language to the image her eyes are seeing, so she has trouble recognizing it. She has trouble “seeing” even though her eyes are okay. In other words, fatigue leads to brain overload that makes her not see well. Even so, Dr Ikeda noticed how well she’s learned to compensate for her loss of visual field by scanning frequently from side to side. We’re glad to resolve the question and gain understanding about her vision. In spite of a frustrating condition for her, Susan handles it like a trooper.

After recently reconnecting with Morris Chapman, a long-time friend from my days at Maranatha! Music, I played his Gospel Praise CD on Sunday afternoon. I enjoyed once again how well Morris evokes a spirit of worship, especially on that album. Susan was caught up in it also as she reclined in the den. She asked for more “dark brown” music, so I went for it with one of Carlton Pearson’s Azusa albums. When I turned the volume down a bit so the neighbors wouldn’t start looking for a tent meeting, she wanted it louder. Ok, right on. Then she asked if people were going to sing over her and pray. As I prayed in my spirit, I asked Susan about what she was experiencing. She said she’s trying to listen to God and obey what he says. I’ve learned not to deny the Holy Spirit an opportunity to move – but Lexie and I needed to leave for a final Holiday Chorale rehearsal, so I called our neighbor and prayer partner Melanie Gunsolus. She was willing to come over right away and pray.

Was there a great accomplishment? Perhaps there was, although I didn’t notice any visible healing. Maybe the God of mystery just wanted to engage some of his children in a call and response – an act of obedience or just some interaction. While we continue to pray, I’m reminded that to God, the process is more important than the result. We are pilgrims on a journey.

Thoughts of Heaven

2009-10-21T23:16:00.000-07:00

I am hoping Susan's episodes of extreme fatigue and confusion are the result of Thursday's chemotherapy and will be temporary. The fact that a few hours of rest usually restores her until the next time is reassuring.

Even though we've had nearly two and a half years to get used to Susan being a brain tumor survivor, sometimes the absurdity of her illness rears up and I feel a strange sense of detachment, like I'm encountering her situation for the first time. It happened tonight in the bathroom when I guided Susan to the sink to wash her hands and she asked, "What do I do?" Since disorientation and word loss have become normal for her, we handle these lapses without commotion, frustration, or scolding and give a gentle word of instruction. "First you wet your hands. The soap is there on the left." As she responded, we breezed over the situation as usual.

If all I knew about Susan was that she's a 48-year-old woman who is unable to wash her hands on her own, I might conclude she's at about the lowest state a person can function. But she jokes around, sings songs she learned when she was 12, knows her friends, and remembers that she takes a Fosamax pill on Tuesday mornings and needs to wait 30 minutes before eating breakfast. She prays earnestly, can rightly solve a moral problem and will comfort someone who's hurting, but may not remember what happened 10 minutes ago. Brain tumors are weird things.
Perhaps my sense of detachment carried over when I looked at Susan before she went to bed and was gripped with intense love and compassion for her. I told her I love her so much, sometimes it drives me crazy. She giggled an "Ohh" like she would have five years ago. I said I'm so sorry she has to go through such an ordeal and I wish I could take it away from her. I assured her at least I want to do everything I can to help her and never want her to feel neglected or alone. She consoled me that none of it is my fault; and she knows I'm doing everything I can to help. As we shared a pillow in the dark room, my thoughts turned dark also – and admittedly selfish. I said I don't want her to die. Without hesitation, Susan said she is not going to die but will go to Heaven someday just like I will, and it will be better than anything we can imagine in this life. Her confidence in God means her faith has become a reflex that leaves no room for despair. I love that.
As we prayed together, I thanked the Lord that he gave us each other and that Jesus has conquered sin, death, and hell for us so we don't have to worry about them. I thanked him for providing a home for us with him, forever, that will far exceed our grandest experiences on earth and will make our hardest difficulties here seem meaningless. I told God Susan's healing is up to him, but asked him to give us Heaven's perspective on earth so we might draw others to him and avoid foolishness and disobedience. We were united in prayer.

Tumor unchanged

2009-10-15T22:07:00.001-07:00

We were grateful to learn Susan's tumor was unchanged over the past six weeks as we viewed her latest MRI yesterday with Dr Nghiemphu. As I've said before, "unchanged" is great news with a progressive disease like GBM. We suspected she'd have good results since her symptoms have been stable for the past six weeks – and were glad to have that outlook confirmed. Some of her blood counts dipped on week four; and her liver function declined on week five, but she showed robust improvement on yesterday's labs and is cleared for her second dose of CCNU tonight. Susan's fatigue, weakness, and short-term memory lapses persist, which seems to be her operating level for now.

While we ask God daily for healing, strength, and restoration; and she receives prayer weekly with friends at home and at church, we are content in trusting the Lord to heal Susan in his time as he chooses. Meanwhile, God certainly continues to sustain us with his grace, peace and mercy while providing the basics we need for life. We find wholeness, purpose, and joy in releasing the difficulties of Susan's illness and our circumstances to God who is "our refuge and strength, an ever-present help in trouble." (Psalm 46:1) We are ever thankful the One who made us also loves us. He guides and provides on our behalf out of the goodness of his nature and the abundance of his resources. God deserves our trust.

Holding steady

2009-10-04T17:56:00.001-07:00

We had a busy afternoon on Wednesday with Susan getting a blood test, a flu shot, and a chiropractic adjustment. Along with her six-week CCNU chemotherapy schedule, she needs blood tests on weeks four and five to make sure her counts are not declining. Her infectious disease physician at UCLA recommended the traditional flu shot now and the H1N1 vaccine at his office later this month when it's available. With her weakened immune system, we decided to do what we can to avoid the flu and will get the vaccines.

Over the past few weeks Susan has not improved much, but thankfully has not worsened. Her greater need for help compared to several months ago required us to bring back a professional caregiver from Sheridan Care part-time. Cynthia worked with Susan briefly last December and returned to our home last week to help with morning activities Mon/Wed/Fri. Susan's situation is so much about transitions, so when increased lifting raised the threat of back problems for some of our volunteer caregivers, it was clear we were getting to the limits of their capacity. With that decision came the acknowledgement of a decline – but that's how it is. Managing a progressive disease like glioblastoma can trouble your emotions. One decline can so easily lead to another, so just one setback can create a sense of dread. But we've found it's much better to live in the realm of the now and the known and avoid the foggy extremes of the what-may-be. Susan is doing okay and maintains her sweet nature and positive outlook. God gives us grace, strength and peace for today, so we'll leave it at that.

During one recent span when Susan was extremely tired and didn't feel well, she slept over four hours on a Sunday afternoon and needed a two hour nap the next morning when I was home with her. After lunch, I put her to bed again and prayed with her before she went to sleep. She said, "I wish I could take the time to tell you why I love you, but I'm too tired…I just love you because you're you and God made you to be very special." And I love my Susan.

Quiet days

2009-09-17T10:20:00.000-07:00

These are quiet days at home as the kids are back in the fall routine of school and church activities. Susan has our awesome team of caregiver friends helping her and has been needing lots of rest. It’s always hard to tell whether her tiredness results from tumor burden or chemo; but fatigue sets in now sooner than before, comes on quickly, and requires a couple hours’ sleep to clear. Aside from weakness and needing rest, her condition is stable. With a progressive disease like GBM, we’re often as grateful for stability as we are for improvement. Her fighting spirit persists – she tells me often she’s going to get better and will keep trying. That’s a medicine as vital as any other and is itself a gift from God.

Our kids are heroes! I reflected lately on the way life has changed for Lexie, Austin & Adam since the summer of 2007 when their mom was suddenly hospitalized and death was near. I’m immensely proud of how they’ve held up, trusted God, trusted me, and supported their mom. Each of them has matured courageously.

I remember when their first reaction in being asked to help with household chores was to complain. The very idea insults the teenage mind. But as crisis erupted, they stepped up. Adam sets the table for dinner, feeds the dog and handles backyard turd patrol. Austin clears the table, empties trashes and moves the barrels for trash day. Lexie takes care of the laundry along with her school and work schedule. Both boys help with dishes and yard work. Managing our home together now is a regular part of life – not fun, but what we need to do. I still need to fire the starting gun or pry the electronics out of their hands – but our kids are terrific helpers. I enjoy watching them walk over to smooch and love on Mom, and play and tease with her. Since this journey began for our family, I’ve been mindful of their need to be kids and not disrupt the activities and relationships that come with this phase of their lives. Perhaps this normalcy has helped us have room for challenges as Mom’s illness ushered in the “new normal” for our family. At any rate, I love Lexie, Austin & Adam and I’m proud to be their dad.

Chemotherapy, Round 3

2009-09-03T22:11:00.001-07:00

Yesterday was co-pay mayhem following Susan's blood draw at UCLA at 7am, MRI at 8am, and oncology visit at 9am. Then we winged it down to Torrance for her dermatology exam and back up to Westwood for an infectious disease follow-up. The only actual infectious disease I noticed was LA traffic. So much schlepping in one day – I ought to have my skin examined. Wait, we did that. The schedule worked out perfectly until our first appointment. It took longer than usual and cramped our timing. Thankfully, the other two doctors accommodated our delays. We pulled into our driveway by about 5pm with Susan mostly nap-less and dog-tired.

Her MRI revealed slightly more new tumor growth than in August, confirming her need to begin a third round of chemotherapy, so she begins oral CCNU (Lomustine) tonight. We spoke at length with Dr Nghiemphu about Susan having a biological agent called XL184, but were put off by its similarity to Avastin with the potential to cause another hemorrhage. We might have decided otherwise if the new tumor tissue were faster-growing and had lots of blood vessels in it, but we think CCNU will handle the need at this time. XL184 sounds promising for high-grade tumors since it cuts off blood flow like Avastin, plus it inhibits certain chemical receptors involved with the cancer. I deeply respect Dr Nghiemphu's approach in making recommendations like these. She informs and explains, and outlines potential benefits and risks - but since an outcome is so uncertain, she stops well short of dictating a treatment. Instead, she invites us into the push/pull of a complicated decision until we arrive there together. The quality of her care is so good – and gives us confidence and peace of mind in the process.

Our dermatology and infectious disease excursions came about because Susan developed two suspicious sores about two weeks ago. They emerged quickly and had too many cancer-like symptoms for my comfort, especially since Susan had a pre-melanoma removed about 5 or 6 years ago. Thankfully, they've already begun to heal and evidently were not caused by anything internal, although their origin is unknown. We walked away with a really good antibiotic cream from the dermatologist and the availability of the ID doctor at UCLA in case we need him.

Lord, sometimes I'm tempted to ask why we have to walk this road of suffering, but I hold back. I know "why" is a mystery on this earth. It may not matter in Heaven. This road is crowded - I'm sure if I knew how many were making their way along, I couldn't bear it. Some people have it way worse than we do, so how can I complain? Some people's whining seems louder than the size of their troubles; but if they've reached their limit, how could I tell them to be quiet? It's better not to compare.

I remember the days before disaster struck. Susan and I were a team in marriage, as parents, in ministry, and in life. Our activities were intertwined in the fullness of those pursuits while the years tumbled out too quickly for us to notice – date nights, anniversaries, soccer teams, kids club, slumber parties, homework, bible studies, dramas, choirs, board meetings, work days, ski trips, the occasional doctor visit, and lots of fun along the way. How quickly life got up-ended! Our game board got turned over; and many things I thought were permanent simply fell off. I didn't know life could be so basic. Alive. Today. Each other. You. At times, it seems that's all we've had. Mostly though, we live somewhere in the middle – date nights have become doctor appointments, that sort of thing.

We grieve at losing the life we had and we grieve the absent promise that life will return to what it was. But what's surprising is that life still offers fulfillment and satisfaction. We have hope, joy, and peace, thanks to you. Somehow, we understand everything is ok. And we know you better. Knowing you provided for us while things were going well was nice, but having you provide for us while we suffer is phenomenal. There's something about your comfort now that tells us you love us, but in a way we couldn't notice until so much had been taken way.

Lord, you know we just met some new friends who learned their son had a brain tumor when he was just ten months old. That was their on-ramp to the road of suffering. You know our other friend just found out he has cancer after his surgery last week. That was his on-ramp. You know about my co-worker's friend whose 22-year-old daughter just died in a 405 Freeway car crash, leaving a toddler without a mom. Her family quickly merged onto the road of suffering. There are so many people on this road – in fact, I'm pretty sure every person on earth will take one of the on-ramps at some point. It's hard, Lord. Upheaval. We can't know why it happened or how it will turn out. And there's no off-ramp in sight. But you know all these answers – why the suffering, how it will turn out, where the road leads; and you choose to keep them hidden from us. That's ok, really, because you know what's best for us. Please help me to focus on you and not our circumstances. Help me to trust you with the mystery.

Ready for chemo

2009-08-21T14:19:00.001-07:00

The past couple of weeks have been fairly stable for Susan. We saw her infectious disease physician last week and learned she has no infection. This is good news; but we also learned her July lab tests most likely produced false-positive results and led to a couple of unnecessary rounds of antibiotics. It's a minor frustration in the big scheme that showed me how to prevent such results in the future. Since infection ruled out for now, it's likely that Susan's modestly increased burden is due to brain tumor and swelling. She continues to be in good spirits but has been weighed down more often with fatigue, weakness, and slight disorientation. As usual, it gets worse when she's tired, so she's been resting more. Some days are better and find her more energetic and alert – but the down days require lots of rest and limit her to a low activity level.

Susan's limited improvement makes the need for her next round of chemotherapy more clear. She will see her neuro-oncologist and begin treatment with CCNU (Lomustine) within two weeks. The limited research I've done on the drug shows the side effects are relatively mild, so it might be similar to when Susan was on Temodar in 2007. The best thing I've learned about CCNU is that it's easy to spell. Aside from that, it's effective at crossing the blood-brain barrier, and as an alkylating agent, it's most active in the resting phase of a cell (as opposed to the dividing phase). Apparently, it affects the cell's DNA so it can no longer divide – a good thing. Unfortunately, it's also toxic to normal cells like those found in the blood, mouth, bones, hair, and gastro-intestinal tract, so it can lead to low blood counts & infection, mouth sores, bone loss, hair loss, and nausea. Even so, this drug appears to be both effective and well-tolerated by most patients. We hope that's true for Susan.

We're thankful for:

Each day, a gift from God.
Each other.
Our children, who are champions.
Our family, our friends, and our church, who love and give amazingly and will do anything to help.
The physicians and staff at UCLA, the best of the best who demonstrate their care with excellence and responsiveness.
Our loving, compassionate, and powerful God, whose faithfulness protects us in every way. Knowing him infuses us with hope. Heaven is but a breath away – but he gives us its resources right now to handle the hardest earthly challenges. Nothing can separate us from the love of God!

New tumor treatment plan

2009-08-07T16:00:00.001-07:00

This week's MRI revealed more about Susan's recent tumor growth and allowed us to sketch out a treatment plan. While brain tumor growth is hardly good news, several positive aspects of our consultation with Dr Nghiemphu brightened our outlook about this phase of the journey. First, the new area of growth spanning the midline near Susan's original tumor site appears to be a less-aggressive type of tumor called Oligodendroglioma. Its appearance on recent scans lacks the intense contrast of a high-grade cancer with lots of blood vessels like Glioblastoma, which is not a surprise since Susan's tissue sample in 2007 contained both types of cells. While it's not benign and usually is classified as Grade II or III, Oligodendroglioma does grow more slowly than GBM and can be treated effectively with chemotherapy. Dr Leia said it's reasonable once GBM has been knocked down by treatment with Avastin that a lower-grade cancer could emerge, since what's effective for one doesn't faze the other. The drug Susan will have next is CCNU, taken orally every six weeks instead of by injection more frequently. So, a less aggressive tumor that's responsive to chemo with no clinic visits for injections? The report could be much worse.

Susan's been dogged recently by a persistent infection, so the doctor wants to allow a month for healing with more antibiotic treatment before starting CCNU since it can lower the blood count and weaken the immune system. Meanwhile, we were encouraged that a return of the fog last week (as I call the recurring load on Susan's brain and body) did not last and was followed by a 6-8 days of alertness and good energy. It's hard when it comes because you never know if an intruding complication means the spell will linger or worsen. She's been burdened again the past few days, making me wonder whether it's from tumor or infection – but we'll find out when she gets some more antibiotics on board. We'll see her infectious disease specialist on Monday and may need to ramp up her treatment.

The Lord continues to provide for us at every turn in meeting our basic needs and reminding us of his care. Psalm 91:1 says, "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty." People give us food, send cards, offer prayer, share their time, and continually express their love and their desire to do more. While we undergo the great storm of Susan's brain tumor journey, God himself has become our shelter and has caused us to rest in his shadow. His peace is a gift to us.

Looks like more tumor

2009-07-28T12:56:00.001-07:00

With the results of Susan's Dopa-PET scan on Friday, it appears she's experiencing tumor growth and will need to restart chemotherapy in the near future. Dr Nghiemphu wants to match the PET scan with Susan's last MRI for a better review; but she believes the scan confirms a new area of tumor near the midline and ventricles. She'd like to see the results of next week's scheduled MRI before we decide on a treatment, most likely another type of chemotherapy. In March when we discussed the potential for tumor recurrence, she said there are a number of chemotherapy drugs she believes will be effective for Susan's combination of Grade III/Grade IV tumor cells. Since we've gotten beyond the first and second lines of treatment of Temodar + radiation, then Avastin + CPT-11, it seems we're venturing into an individualized mode where you find something effective and stay on it as long as it works. Thankfully, Susan is a brain tumor survivor who has taken as long as two years to reach this point.

There is relief in understanding what's wrong since Susan has slipped below her fine form of month or two ago and the burden on her system has become more evident. There's hope in anticipating the next level of treatments will do their work to help her and that God may heal her by any means. And there's comfort in knowing that God has us in the palm of his hand, just as he has all along our brain tumor journey. I find these words from 1 Peter 1:6-7 especially encouraging – Peter praises God for our living hope, for our inheritance, and for God's protection, and then writes:

In 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 your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

Our help is not in gold, or medicine, or even in our faith itself. Our help is in the name of the Lord. I can't say it any more plainly – we trust him.

PET scan

2009-07-24T17:55:00.001-07:00

The fact that Susan has been more mentally burdened this week makes me glad we were able to get in for her Dopa-PET scan at UCLA today. It's a type of CT scanner that uses a radioactive chemical called Dopa injected in the bloodstream to highlight images of the brain. They keep the syringe encased in a heavy tungsten enclosure the size of a thermos and connect it to an IV.

Susan was so full of the stuff she could change our car radio stations by waving her hand. It prompted comments from me like, "Honey, I know you're not a Nazi, but I need to hold your arm that way so we can listen to KRLA on the way home." It's hard to explain, but I think our microwave is jealous. With Susan's new glow, I'm pretty sure we'll be able to keep the nightlights off for a while. We'll get the results on Monday and we trust God as ever.

Holding Up

2009-07-16T21:44:00.001-07:00

Following a lingering headache, another episode of nausea and vomiting on Saturday and weekend phone calls with a neuro-oncology fellow at UCLA, Susan was put back on Decadron, the anti-brain-swelling steroid. Because of its side effects, it's one of those drugs that as badly as you need it, then you need to get off of it. After finishing a careful, three-month taper in June, resuming it was a reluctant but necessary step – and she's doing better this week. We're already stepping the dose down from 8mg to 6mg and may be at 4 by the end of next week unless she worsens. The fact that she hasn't had a big cognitive slump by now is a good sign and gives us hope of a favorable PET scan result in the coming weeks.

I've written before about our nighttime talks when we have beautiful, lucid conversations before going to sleep. I don't know if it's the dark quiet of our bedroom, the lack of distractions, or the peace of our prayer time, but when we talk sometimes the effects of Susan's illness seem to fade away. We could just as easily be having a conversation five years ago.

Last week's MRI was the first troubling one we've had in over a year, so one night in bed last week I asked Susan how she was doing and whether she was feeling a bit discouraged. She admitted she was, and a bit scared, too. I asked her about that. She said she's not afraid of dying, but she's afraid of losing all the progress she's made. She said she's going to do her best and keep trying. That's the answer of a fighter who's a long way from giving up. I told Susan how thankful I am for how God made her – a person with a positive disposition and an ingrained sense of commitment. Her hard-work ethic means she does what needs to be done in spite of how she feels. Gotta love that woman.

We also talked about Heaven and how amazing it will be to see, hear, and touch a world our souls have longed for, and we imagined what it will be like to be with the Lord in person at last. I told Susan I'd been thinking about how the nature of our faith and hope in God will change when we go to Heaven. What happens when we don't need to believe any more because we're looking right at Him? What happens to such a hope when it's fulfilled? We wondered about that. Even the word "fulfilled" seems lacking – I have a sense that what we'll get in place of our hope will be much, much more. Someday….

Concerns

2009-07-10T18:06:00.001-07:00

We went to UCLA on Wednesday for Susan's scheduled MRI and oncology update. The timing was good, because on Sunday morning she vomited at the breakfast table and developed a persistent headache – two signs that tell us something could be wrong. While there's no obvious tumor growth in her left frontal lobe where the tumor was removed, the MRI showed an area of swelling nearby. The blood clot from January's hemorrhage is slightly smaller than six weeks ago, but what's there may be obscuring the view.

Dr Nghiemphu is also concerned about an area to the right of Susan's tumor cavity near the midline and ventricles that may be new tumor growth. The area didn't pick up the contrast solution that would highlight a fast-growing tumor; but she's concerned about a lower-grade cancer since Susan's biopsy had both types of cells. She ordered a dopa-PET scan for the first available slot, but that's not until mid-August. Since Susan's headache eased by mid-week and she's generally doing well otherwise, we're not too alarmed. We hope she continues to do well so she can avoid going back on the steroids that would be required if she declines. As always, we're ever in the Lord's hands and trusting him.

Here's an encouraging passage from Psalm 28:

⁶ Praise be to the LORD,
for he has heard my cry for mercy.
⁷ The LORD is my strength and my shield;
my heart trusts in him, and I am helped.

Waiting

2009-07-03T17:21:00.001-07:00

Susan graduated this week from having a full-time, paid caregiver to having the help of family and friends, a step made possible by her growing strength plus the kindness of others. We're grateful to Ana for her seven months of wonderful care for Susan and will need to overcome her spoiling us with daily laundry service and other housekeeping helps. But what's astonishing is that we can turn to more than a dozen dear ladies who each devote 3½ hours to provide Susan with care and companionship each weekday. We are rich in acts of service on our behalf and are in awe of the love expressed through our church.

While a friend and I were talking this week about the two years since Susan's brain tumor diagnosis, I mentioned her ten or more stable MRIs since 2008 and realized a new perspective – we're waiting for something to happen. We're waiting for the tumor to grow again, because that's what high-grade, malignant tumors do. We're waiting for God to heal her miraculously, because that's what a loving, almighty God does. We're waiting for a medical breakthrough that will move glioblastoma from treatment to a cure, because that's what scientists are dedicated to discover. These are our three options, so we're waiting. Sometimes it's hard to wait.

Sometimes it's harder to wait than others, like when the momentum of a devastating disease like brain cancer can't be stopped in spite of all efforts. As the crisis intensifies, the patient worsens – and then it's over. The battle is finished. I'm thinking of brain tumor buddies we loved: Larry Litherland, Joanne DeBoer, Jeff Nord, and Joanne Bono. Sometimes, momentum closes in on the unbelievable, which becomes the inevitable. That kind of waiting brings anguish. It can crush you because you just can't get a break; nothing works. We've had a break, thank God, so we're still waiting.

None of us likes waiting for anything anyway. Who hasn't yelled "Hurry!" at the microwave? Jell-O takes overnight in the refrigerator to set – but we speed it up by adding ice cubes. Then there's minute rice and minute oatmeal, and we haven't even left the kitchen. Don't get me started about the DMV.

Waiting for anything you're focused on can be torturous, like a child waiting for Christmas, or a trip to Disneyland. It can be especially hard to wait for things you can neither control nor avoid, like the 95-year-old who's outlived her husband and friends and restlessly faces her natural end of life. Such an existence can be made worse when it could have been avoided, like the prisoner whose agony over his long sentence is magnified by the frustration of causing it. But it's especially hard to wait when something as important as the life of a loved one hangs in the balance. It's natural to wonder what will happen, and when. Would it be any easier if we knew what the outcome would be? I don't think so. We'd still have to wait. So, we're waiting.

Then there's God, always attending, always caring, always providing his creative power on our behalf, always making despair optional for us even if our circumstances are not. Those who know they belong to the one who does his best work in graveyards have a wellspring of strength that somehow finds its flow in hopeless situations. Waiting need not be misery when it can be infused with faith, discovery, and the expectation of God's goodness to be revealed. We have his promises to guide us, like a favorite of mine from Isaiah 40:

28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

With help like that, I don't mind waiting.

Two years in brain tumor world

2009-06-28T20:49:00.000-07:00

Friday marked a peculiar anniversary, two years since Susan's CT scan at Clearlake that followed accumulating symptoms, revealed a mass on Susan's brain, and ushered in a series of events that have changed our lives. I'm thankful to say "our lives" since Susan is still with us and doing wonderfully. She has outlived the average 8-12 month life expectancy of glioblastoma multiforme patients by a merciful margin.

Over the past two years, Susan has been through several swings from life-threatening crises to the relative calm of the chronic mode. On June 28, 2007 she had a surgical biopsy that offered the first occasion to type the tumor. July 3 brought Susan to ER with seizure activity and a declining condition. On July 4, she had emergent brain surgery to de-bulk the tumor and awoke the next day in ICU with the effects of a stroke and in a precarious state. Death was near for Susan, yet came no closer.

The ensuing months brought initial rehab, a second brain surgery, and a string of hospitalizations for drug reactions, fungal meningitis, and hydrocephalus, plus her initial course of radiation and oral chemotherapy. The second half of year one allowed for huge improvement with maintenance chemo and a variety of at-home therapies until the tumor advanced again in the spring of 2008.

Year two introduced Susan to chemo infusions every two weeks and the return of hydrocephalus, plus increased physical and cognitive weakness, a broken vertebra due to a fall, and three months in a rehab hospital. In spite of improvement that continued through the autumn, more complications would develop, including her brain hemorrhage in January. Right now I truly can't recall how many times Susan has been hospitalized. Without checking, I think it's probably 10 or 12 inpatient visits. Meanwhile, Susan has improved at every level while remaining free from brain tumor progression. We thank God.

Our children have adjusted remarkably well to their mother's illness that has taken her from her fully functioning role to a brain tumor patient in critical condition with fitful recoveries and many hospitalizations. We admire how Lexie, Austin, and Adam have joined us in trusting God for Susan's future and how quickly they stepped up to maturity in filling the gap left by their mom's inability to manage our home like she did before.

In prayer last night before bed, Susan once again submitted her life to the Lord and accepted his plans for her, whatever they may be. She looks forward to being in Heaven and told God it's the most wonderful thing she can imagine. With her 30-year Paramount High School class reunion approaching on July 18, she has expressed excitement about seeing her friends again, as well as concern about those same friends seeing a lesser version of her. I understand her feelings and certainly see her point. I also expect her friends will encounter a greater version of Susan as a two-year malignant brain tumor survivor, made lovelier by faith and peace under grace during difficult times.

What brain tumor?

2009-06-17T15:15:00.000-07:00

I called home from the office this morning to check with Susan and see if she was feeling better. She’d had a few symptoms return after a weeks-long absence and was feeling tired and discouraged when I left the house. By mid-morning, she’d slept some more and was feeling well. When I called, we had one of those fluid, lucid conversations that are becoming more commonplace and lead me to wonder, “What brain tumor?” Susan is clearly in the best shape she’s been since last year at this time when hydrocephalus set in and set off a season of infections, fractures, illness, and hemorrhage. Her improvement over the past 3-4 months has been remarkable – and most welcome, since it’s ushered in a level of normalcy to our household that we’d missed for a long time. This morning’s episode reminded both of us how little she’s been ill recently and alerted me that complications could interrupt our lives again at any time. We remain, as ever, squarely in the Lord’s hands and thankful for Susan’s healing, strength, and restoration.

We had a conversation at church recently with some friends who have been faithful in support and prayer for Susan. A typical 5-10 minute chat involves the weather, the movie you saw, the team you like or what the kids are doing, so it’s not ordinary for a person to speak of death and dying in the span of a casual conversation. But when Kristen shared that she’s been encouraged by Susan’s faith, Susan responded honestly in what’s become a normal (but not too frequent) acceptance of our situation. She said something like she couldn’t have expected all that’s happened, but she’s ready to go home to the Lord whenever he’s ready for her. She believes God has a purpose and work for what remains of her life on earth, but when it’s time to go to heaven, it will be far better than being here.

Her comments demonstrated Susan’s peace with her circumstances, her trust in whatever the Lord’s plans are for her and the glorious confidence she has in her future. I couldn’t help but note the odd contrast of her words considering how well she’s doing, but I also cannot imagine a greater gift than God’s perfect love that casts out all fear (1 John 4:18). It’s just like our good and sovereign Lord to solve a problem for us that way – if he doesn’t remove the circumstance that’s giving us trouble, he’ll take away its ability to trouble us.

Paul writes, “Where O death, is your victory? Where O death, is your sting?” The passage he quotes in 1 Cor 15:55 is from Hosea 13:14,

“I will ransom them from the power of the grave; I will redeem them from death.
Where, O death, are your plagues? Where, O grave, is your destruction?”

Put another way, the Inez Andrews gospel song says, “Lord, you don’t have to move my mountain, but give me the strength to climb.” I just love that Susan is living it.

New blog gadget: Followers

2009-06-09T12:14:00.000-07:00

Here's a purely administrative note - I've added a new feature for an easy way to follow our blog, a gadget called Followers. You can become a follower using the button on the left of the home page and keep up with the latest entries.

Moving right along

2009-06-08T23:15:00.000-07:00

The trend of improvement continues for Susan in all respects, cognitively and physically. We hope this path leads to greater independence and eventually to her ability to be alone safely. Susan is taking more initiative with more activities and has been less apt to forget the next step in a routine activity unless she’s tired. She still needs stand-by assistance to get around so she doesn’t fall, but her endurance is increasing. We walked to the end of the block on Saturday for the first time in six months or more. Tonight at bedtime she brushed her teeth, walked to the bedside, applied some lip balm, and put on a small brace she wears at night to position her shoulder properly. These are simple, regular tasks that I had to do for her only months ago because she lacked the impulse or the strength. Tonight she did them while I was not even in the room. We thank God for His sustaining care and healing hand for us.

Our chance encounters with friends lately remind us again of God’s phenomenal love in the Body of Christ. From church to the grocery store and points in between, people ask how Susan is doing and say they’re praying for her. When we saw Elvia from church at the chiropractor on Thursday, she knelt next to the chair Susan was sitting in and prayed for her there. When we saw our neighbors Robert and Carrie Nicks at Adam’s choir banquet on Friday, they came across the room to our table to greet Susan. They remarked how good she looks and said they keep her in their daily prayers. Later we commented to each other how amazing it is that people are so committed to praying for us. These glimpses into the world of unseen support assure us God is working graciously and mysteriously. I know the burden of Susan’s brain cancer is lighter for us because the Lord has prompted others to help us carry it with their prayer, words of care, and acts of kindness. The depth of God’s goodness and the goodness of others is astonishing.

I’ve been returning to Psalm 25 lately, a comforting vehicle for me to be laid bare before God and accept my smallness before Him and His kindness toward me. David says in verse 16, “Turn to me and be gracious to me, for I am lonely and afflicted.” This is an amazing request that reveals the very nature of the Living God. Considering some sources of power, it would be a crazy thing to invite them for a personal experience. Would I want a bomb blast, a bolt of lightning, a gun-toting terrorist or a roaring hurricane to turn to me? These powers are greater than I am. I cannot control them. They could destroy me. But isn’t this also true of God? Why would I ask Almighty God to turn to me? God’s power exceeds any other – He is the source of power. He is uncontrollable – He is sovereign in all respects. But God is good. God is kind and He is gracious. He has committed Himself to us in faithfulness and love. If not for these, only a fool would say, “Turn to me.”

If David understood God’s power, and to read the Psalms he wrote I’d say he did, he also understood His gracious nature. The kindness of God made it okay for David to approach Him humbly so the power of God could meet his need. “Be gracious to me, for I am lonely and afflicted.” I am convinced God uses the hard things in our lives to help us realize our need for Him. Since He is for us, His power is for us also. With such a resource available for the asking, perhaps the foolish thing is to not say, “God, turn to me.”

Another good MRI

2009-05-28T13:25:00.000-07:00

Susan’s MRI at UCLA yesterday showed continued improvement with her blood clot getting smaller and tumor remaining unchanged and stable. As the clot from January’s hemorrhage resorbs and clears on its own, it reveals a clearer look at the tumor. Since it blocked much of the detail on April’s scan, Dr Nghiemphu couldn’t be certain about tumor stability even though things looked good in general. Yesterday’s scan allowed Dr Cloughesy a clearer view and left everyone with a sense of gratitude about Susan’s progress. She’s doing well on her Decadron taper and was cleared to stretch her dose another notch to one-half milligram every two days instead of every other day. She’ll be off it completely before long. We'll go back for another scan in six weeks. Meanwhile, Susan continues to strengthen and improve both physically and cognitively. She’s able to stand and climb steps more easily, has better mental clarity, and seems more her normal self all the time. We had a great day together yesterday with her UCLA appointments and enjoyed a lunch date at BJ’s in Westwood afterwards. We found ourselves walking past Diddy Riese after lunch, found ourselves standing in line, found ourselves ordering hand-made ice cream sandwiches, then found ourselves sitting along the sidewalk and eating them. We are mind-numbed robots with no actual control over ourselves. But at $1.50 for two freshly baked cookies squished around rich ice cream, self-control is out of the question.

The boys and I got to be lumberjacks again on Memorial Day weekend as the four of us and Daisy the dog got back to the family cabin in Angelus Oaks. We were rejuvenated by the sunny, mild weather, fragrant forest and tree-felling man work. The County of San Bernardino increased their fire safety requirements, so we had to limb-up and thin areas of the property that have been untouched during my lifetime. It’s a work in progress that we’ll continue over the summer; but we made a good-faith effort and a highly visible difference with the help of our neighbor, Jim Finn. You gotta love the power tools. Susan is yet unable to prepare meals and handle the indoor activities she used to do, but her greater independence made it possible for us to work outside without having to be with her 100% of the time. Some brief visits with friends and beautiful weather made it another memorable weekend. We treasure our family hideaway.

More grace

2009-05-22T11:00:00.000-07:00

With no dramatic changes physically, Susan continues to improve mentally these days. She’s now more fully engaged in what’s happening around her, has better alertness and memory, and is more able to track the family’s activities from day to day without help. This kind of progress is hard to measure day to day but is obvious compared to weeks or months ago. Those who don’t see her daily tend to notice her improvements right away. Ever aware of God’s gracious hands upon us, I suspect the clot from January’s hemorrhage has continued to clear. We’ll know more about the clot and tumor when we return to UCLA next week for a scheduled MRI and oncology visit.

One highlight this week was our return together to Mayfair HS for open house on Wednesday evening. It’s been two years since Susan’s been able to be on campus for these kinds of events. We used her wheelchair and were able to zip around campus and see most of the boys’ teachers after catching one of Adam’s final choir concerts during a pizza fundraiser. In spite of a few lapses here and there, we received encouraging reports on Austin and Adam. Having feedback about their smarts, character, and positive influence on their peers makes us deeply joyful and increases our confidence about their transition to adulthood. They’re good kids – we’re thankful. I always remember Dr Dobson’s comment that adolescence for a family is like going through river rapids. You need to hang on and keep everyone in the boat. There are calmer waters ahead.

As I was summarizing our situation with some friends this week, I kept feeling grateful to God for the gift of hope during hard times. I believe it’s the great difference maker for us. It’s just hard for lousy circumstances to crush you when you know you belong to God. As I shared with one friend, I'm so impressed by the goodness of God and how He uses the challenges and tragedies of this broken world to help us grow in faith, character, and appreciation for the basics of life. We learn these lessons best by walking the path of suffering in faith and trusting the one who guides us with a reliable hand. It still sounds strange to say, but there is preciousness in suffering. The process is so much more important than the outcome. I will never regret what we're going through.

Quiet improvement

2009-05-11T20:10:00.000-07:00

Susan continues to improve during her respite from chemotherapy. She’s more alert, has better memory and is more her normal self all the time. She sometimes confuses words and the days of the week and she’s still physically weak; but we’re grateful for the positive direction she’s moving. Although Susan doesn’t seem different to me from day to day since I’m with her all the time, people who haven’t seen her in a while often mention how much better she’s doing. Her caregiver, Ana, helps Susan on weekdays with meals, bathing, and therapy exercises and is an invaluable help for us with laundry and daily housework. Today brought us back to UCLA for a follow-up appointment with the infectious disease doctor who’s been treating Susan for her various infections including fungal meningitis. Dr Uslan echoed how well she’s doing and obviously was pleased with her energy and responsiveness. He said seeing her recovering so well made his day. We bumped the next check-up from three months to four.

A generous client of mine who is an Angels Baseball season ticket holder shared her 3 seats with us again this year for last Friday night vs the Kansas City Royals. I’ve taken Austin and Adam for the past several years, but since Austin had plans already, I thought I’d bring Susan along. The seats are in the middle of a row above field level along the 3rd base line not far from the Angel dugout. I thought she might have trouble walking up and down steps and past people in our row, so an usher let us sit above our section in a handicapped seating area. Those seats were unsold that night, so we had good viewing and plenty of room for Adam and I in stadium seats next to Susan in her wheelchair. As the game was under way and we were eating our sandwiches, I wondered how much Susan was able to follow. Just then, she turned to me and said, “It’s a full count.” The count on the scoreboard showed 3-2, a detail I doubt she could see. I knew she was following the action and we were in for a fun evening. A while later, the trumpets blared and the crowd yelled, “Charge!” I shouted “Pay cash!” – Susan cracked up and Adam rolled his eyes. It must be terribly exciting to live with me. When the final inning closed, we walked along the concourse behind center field for the Angels’ “Big Bang Friday” fireworks show. We had up-close viewing of the display along with a Rolling Stones soundtrack to wrap up a memorable evening.

God has been completely and consistently faithful to us during hard times. We are amazed. We count our blessings and give thanks. Although I work as many hours as I can, our family medical expenses have piled up since the first of the year. At times our bills have been overwhelming – but God has met our need with each time with gifts from loved ones. With compassion, my employer accommodates my erratic need for time off, sometimes for days in a row. Susan’s parents provide our caregiver for us and bring a meal each Thursday. For months, someone from church frequently has brought us extra food almost weekly. Another family from church generously provides their housecleaners for us each week. Several ladies come by each week to lay hands on Susan and pray – not to mention the countless people who pray faithfully all the time. Sunday at church someone tucked an envelope into my hand containing a large check. As we approach two years of the hardest season we ever could have imagined, we have encountered some of the best of life and God’s goodness. Thank you, Lord!

A good-news oncology visit

2009-04-27T12:48:00.000-07:00

We visited UCLA last week for Susan’s scheduled MRI and oncology visit with Dr Nghiemphu. The results were good, with continued tumor stability and evidence that the blood clot from January’s hemorrhage is breaking up. Susan has rebounded well from her most recent bout with infection, so the doctor is pleased with her overall improvement and has extended Susan’s scheduled MRIs to six-week intervals instead of monthly. Meanwhile, Susan will continue her physical therapy at home with her caregiver. I’ve noticed Susan’s alertness has improved a great deal since her infection cleared, although she still needs full-time assistance for daily living due to weakness and cognitive limits. We’re certainly grateful for the good scans this week and her continued respite from chemo treatments. We don’t know how long this quiet phase will last or how much function she’ll regain; but Susan is as committed as ever to getting well. As I lay her down to rest the other day, she apologized about needing so much help, but then she said she didn’t choose to be this way. I assured her it’s all okay. We’re partners, we’re in it together, and we’ll get through it together.

After Susan’s appointments were done on Wednesday, we walked to a little place for lunch called Café Synapse that serves delicious, fresh food and always is populated with medical students. As we approached the entrance across the street from the hospital, we noticed 3-4 police officers standing near each of several building entrances. I said we were there to eat at the café and asked if we could enter, and noticed some riot gear stashed inside the doors as we were allowed inside. I thought there might be a VIP visiting the building, but learned the police were there because of an animal rights protest happening a block down Westwood Blvd. I’ve read about previous protests against medical research on animals at UCLA and I knew about some violent attacks on researchers’ homes. While we ate, I noticed several small groups of protesters carrying signs as they marched on the street below, each tailed by a motorcycle officer. While searching a hallway for a restroom after lunch, we came into the midst of the protesters’ passion – a group of the university’s research labs, including one headed by one of the very brain surgeons who has treated Susan. Someone taped a picture of a lab rat on a door in what didn’t seem to be an act of protest but a symbol of the work they do there.

When it comes to the sanctity of life for animals, we have a spectrum with the extremes. On one end, there are those who elevate animals to equal or even surpass humans, like the protester with the sign reading “Stop Animal Terror.” On the other end, there are those who diminish animals to be unimportant or even disposable, like the kid with the B-B gun picking off sparrows. Somewhere in between are those who recognize animals’ importance and the sober cost of using them to rid humans of disease, like the other protester with the sign reading “Animal Research Cured My Mom’s Cancer.” Wednesday’s protest at UCLA actually was organized by a research professor who grew tired of being attacked. By the time Sue and I strolled down the block to the protest area, the pro-research protesters had packed it up, leaving the anti-research protesters making noise near the satellite trucks. Susan’s comment was observant – “There sure aren’t very many of them for all the attention they’re getting.”

Update on Janet Buccowich

2009-04-23T11:32:00.000-07:00

Here is an update from my sister on our mother, who was discharged from the hospital on Sunday after being treated for pneumonia. We expect Mom will get past her recent complications brought on by drugs that were intended to treat mild symptoms associated with her brain tumor. As for the meningioma, the treatment plan for now is conservative. She is comfortable with having occasional MRI scans to watch its slow-going progress since a surgery could introduce more ill effects than the tumor itself. Mom expressed her gratitude for lots of people near and far who have prayed and expressed their care.

Just wanted you to know that mom is doing fine at home. Rest continues to be her biggest ally. Most things are back to normal, but she is still unable to get herself out of chairs unless they are quite high, and her feet swell if she doesn't keep them elevated enough. These are still effects from the steroid. She is on a lesser steroid until she can see the endocrinologist on Tuesday, and hopefully begin a taper off. Once she is off of that it should be smooth sailing on the way to complete recovery!
The high point of her week this week was the shower on Tuesday. If you've ever been in the hospital or even out hiking/camping you know how good that feels! The other high point was being able to dress in clothes and go out yesterday (even if it was only to the doctor and it pretty much wiped her out for most of the day). She is getting stronger daily, able to walk a little farther and stand a little longer than the day before. Of course, by night time she is pretty tired. Her breathing is also much better. Seems that she only gets out of breath now with exertion and it's not that breathless kind. So she's coming along quite well!
Hope you all are doing well! Thanks again for your love and prayers! God is good! More later! Love, Becky

Improvement, UCLA Brain Tumor Conference

2009-04-17T11:55:00.000-07:00

Susan’s infection finally resolved with her 10-day course of antibiotics, leaving her with improved alertness, memory, and strength over the past week. On Palm Sunday, we visited my mom at UCLA toward the end of her earlier hospitalization, so Susan actually had her first trip to the medical center as a visitor. Woo-hoo! That’s progress. Later, we enjoyed a dinner date at Jerry’s Deli in Westwood, where we always seem to get the same table with her wheelchair. As we enjoy her lift and lighter mood, the contrast is striking. It’s amazing how disruptive these ailments can be, putting a clamp on so much of her ability to function. We trust and pray now that the blood clot in her brain will dissolve fully over the coming months. We continue to ask God for healing from cancer and all of its effects and for her strength and restoration. We trust Him for the outcome according to His will.

Last Friday and Saturday, my mom, sister and I attended the 9th annual UCLA Brain Tumor Conference on the campus in Westwood, hosted once again by Neuro-oncologist Timothy Cloughesy. Susan joined us on Saturday. Like last year, I realized again that the UCLA neuroscience team of oncologists, surgeons, radiologists, pathologists, social workers, nurse practitioners, and staff are really smart, really hardworking, really caring, and really committed to helping rid people of brain tumors. Their research-driven program incorporates the global body of knowledge about brain tumors, pursues avenues of the science that show promise, and distills it all into practice for treating patients.

Having navigated brain tumor land for over a year and a half, I was more at ease with the volume and complexity of information and better able to absorb more of its subtle aspects. I heard again that any tumor is really a problem with the immune system being unable to stamp out rogue cells that multiply too quickly. I concluded again that brain tumor patients have one thing in common – a brain tumor. Beyond that, factors like tumor type, grade, and location, plus patient age, health, treatment options will make one person’s outcome different than another’s. I understood for the first time that even brain tumors of the same type are not the same (they’re heterogeneous). For example, one glioblastoma multiforme tumor is not like another because of unique ways one person might express proteins on the microscopic level. With these individual differences, the same treatment will not work in the same way for two people with the same type of tumor.

I also had clinical trials demystified for me a bit. I had thought (and hoped for Susan) that a clinical trial is desirable over other treatments because that’s where all the cutting edge stuff is happening. It does make sense – a breakthrough treatment needs to go through a clinical trial before it can be available to everyone, so clinical trials are a realm to search for better treatments. But I learned that CTs are also a testing ground where ineffective remedies can be ruled out, so you must beware of the risks involved. Then I realized CTs are kind of like minor league baseball. You might go to a game hoping to see the next Manny or A-Rod, but you might waste your time watching deadbeats who don’t belong in the majors. At least with baseball, the risk is limited to a letdown plus the cash you spent. While I would not rule out a CT, the benefits are clear in employing a treatment that’s been accepted as a standard of care – having passed clinical trials, more people have used it by now and the outcomes and risks are more predictable.

While Susan was praying the other night before we went to sleep, she got stuck. She said, “and Lord, please help me to…” (pause) “Please help me to…” She couldn’t get the words out – but I hoped she would because I wanted to know what she wanted God to do for her. Susan can’t communicate like she used to, so our conversation usually is limited to basic stuff and playfulness. That’s just how it is. But I wanted a glimpse of her heart’s desire, and hoped at least I could overhear it while she expressed it to her Father in Heaven. “What do you want God to do for you?” I asked. “I can’t think of how to say it.” After another pause, she said, “What am I thinking of?” She really was stuck, so I said, “God knows what you want.” She continued, “Lord, you know what I want. You know what I want. Please help give me what I want…to your glory.” So, I was content with another element of mystery on our journey. And that was a great prayer.

Janet Buccowich hospitalized again

2009-04-16T11:22:00.000-07:00

My mother Janet was hospitalized at UCLA Medical Center on Tuesday and is being treated for pneumonia. She’s been struggling with medications begun in February to treat effects of her benign brain tumor (meningioma). The steroid Decadron has been the biggest culprit in terms of fatigue, muscle loss and weight gain. She had some pulmonary edema or fluid on the lungs several weeks ago when she was hospitalized for testing, but it resolved on its own over several days and required no treatment. Meanwhile, some breathing difficulty persisted recently as Mom began a progressive taper schedule to get off of the steroid. Mom woke up with a fever and increased weakness on Tuesday morning, the day my sister Becky and I were to take her to a follow-up appointment with a UCLA endocrinologist to address her steroid-related side effects. Her fever spiked and she continued to weaken as we met with the doctor, so she was admitted to ER where the pneumonia was discovered. She’s been moved to the UCLA Santa Monica Hospital for continued treatment until she’s well enough to return home. We thank God for the timing of her scheduled doctor visit at UCLA that allowed her to get help when she needed it. She was fading fast, so the event became a bit traumatic for everyone. Since it looks like the pneumonia resulted from her weakened condition on steroids, she’s expected to be free from chronic effects once she recovers and eliminates more meds.

Regarding her brain tumor, UCLA neurosurgeon Dr Bob Shafa has recommended a conservative approach to treatment. Meningioma tumors grow slowly, about 1mm each year. Mom’s tumor was only 2mm when it was discovered 18 years ago, is now under 3cm, and has given her only slight symptoms. Brain swelling and seizures have not been a problem so far. As a result, her treatment plan calls for observation, minimal drugs, and surgical resection only as a last resort. She’ll have an MRI every 6-12 months to monitor the slow tumor progression. We hope she can return home from the hospital soon.

Since Susan has been such a regular patient at UCLA, Mom’s hospitalization is a bit surreal and can lead to some confused encounters. I’m used to focusing my caregiver energy on my wife in that environment, so it’s weird for me to see my mom there instead. I'm a familiar face to some of the staff, so I had some “How’s it going?” and “You again?” greetings this week in the ER. Danny the x-ray tech was faked out when he wheeled his machine into the “Buccowich” room and expected to see Susan for chest pictures but saw Janet instead. Such is life for the Buccowich brain tumor people. We’re still waiting for the multi-family discount.

Lousy infection!

2009-04-01T09:32:00.000-07:00

I’m not sure if it’s a new one or the same one returning after lying low, but Susan’s recurrent infection is back. Her lab results from last week were positive for bacteria in her urinary tract and also showed resistance to Bactrim and Cipromycin, two antibiotics she had recently when symptoms surfaced again. She’s been on a different antibiotic called Augmentin for two days and will have more labs this week to see if the drug is being effective. If it’s not working for her, she’ll need a course of stronger, IV antibiotics. This episode has been a drag for Susan – increasing fatigue, weakness, and confusion, and causing some irritability. She hasn’t had the strength or will to participate in therapy very well the past few days. We continue to pray for healing and we hope her current meds will knock down the infection. She’s burdened enough while the blood clot remains on her brain, so relief from complications like this will be most welcome.

Tumor stable, clot still there

2009-03-25T19:49:00.000-07:00

I was apprehensive about Susan’s MRI today. She’s been weighed down with confusion, weakness, fatigue, and other aspects of a neurological burden that had me prepared to discover her tumor had grown since last month’s scan. We are relieved and thankful her scan looked good today. Brain swelling is down in spite of lower doses of the steroid Decadron, the brain tumor has not grown, and the blood clot from January’s hemorrhage is still there. It’s the clot that’s chiefly causing her symptoms. It’s big, and it’s putting pressure on the top of her left frontal lobe. While much of the bleed is contained in the cavity where tumor was removed, a portion of it rests on top of brain tissue in an area that affects memory, speech, balance, and the initiation of tasks and movement. On the brighter side, the whole deal can make for some funny conversation. Tonight at dinner I noticed Susan’s empty bowl and said, “You finished all your fruit.” “Yep,” she said. “I ralphed ‘em down.” I’ve just always heard that word used when food moves the other way. Yesterday, Susan was still having a late nap when I got home from work. She actually was awake when I walked into our darkened room. I said, “What’s going on in here?” to brighten up the place. Who knows how long she had been quietly waiting. “I’m just lost in space,” she stated pleasantly. Some of her comments truly come from beyond the sun – and make me laugh.

Even though the bleed is a culprit that will be with her for a while since they normally take 3-6 months to absorb, we feel a weight lifted in knowing her tumor has not advanced. Statistically, it will be a matter of time for a grade IV GBM to grow again. That’s the reality. It’s just not yet – and that’s a relief. We are aware of God’s great and gracious hands leading, guiding and providing at every point of need we have. We have many right now. My prayers lately have moved from “God, give us strength” to “God, be our Strength.” Not just “God, give Susan healing” but “Be her Healer.” It's not so much wanting what He can do for us as it is wanting Him. I sense we’re more aware of Him in ordinary moments and wanting more of His presence. It’s a satisfying type of growth that prepares us for an eternity with Him. Yet knowing sin is “crouching at the door” and inevitably I will break fellowship with Him is also a reality. Perhaps I’ll remember to say not “Lord, give me grace” but “Lord, be my grace.”