New old chemotherapy

The news this week of more tumor growth brought us to start treatment immediately. With the tumor growing, there’s no reason to wait. Last year’s chemo bought us only several months of stability, so Dr. Nghiemphu ruled out going back on Temodar. She recommended an older drug combination called PCV that’s coming back to use based on research published last summer. PCV chemotherapy is a series of Procarbazine, CCNU (Lomustine), and Vincristine doses that were the standard of treatment following surgery and radiation 20 years ago before Temodar was available.

A long-term study revealed that brain cancer patients with recurrent Oligodendroglioma who also have a 1p/19q chromosome deletion have fared well with PCV treatment. Since Susan’s tumor has oligo cells and her DNA is missing those chromosomes, she may respond well also. Our one reservation is whether her body can handle it after nearly 6 years of ingesting heavy-duty chemicals. We’ll need to watch for worsening blood counts and other side effects.

Meanwhile, she had one dose of oral CCNU this week, will go to UCLA next week for Vincristine IV, and then will start two weeks of oral Procarbazine. She’ll go back for Vincristine three weeks later, get labs done, and start the whole cycle again if her counts are okay. With PCV, CCNU, and UCLA for GBM, all I need to do is keep the acronyms straight.

Wednesday’s MRI also alerted us not only to tumor growth and brain swelling, but to enlarged ventricles. This indicates fluid build-up or hydrocephalus. We don’t know whether it was triggered by tumor growth or a failure of her shunt, but it we may need to have the shunt checked out. That could mean another surgery to replace the L-P shunt; but we’ll see. At any rate, between brain swelling and hydrocephalus, we need no other explanation for her present physical and cognitive weakness.

We’re so encouraged by people’s expressions of care and the many prayers lifted on our behalf. We remain secure in God’s peace and confident in his plans for us. I spent a good deal of the past month or so meditating on Psalm 50. As a writer, I’m intrigued by its verbal theme – God speaks. His word is powerful, commanding, and carefully used. But buried in there I found his valuable command. “Sacrifice thank offerings to God, fulfill your vows to the Most High, and call on me in the day of trouble; I will deliver you, and you will honor me” (Psalm 50:14-15).  

Again, it’s all about words: thankfulness, keeping vows, and crying out, which is a fascinating idea from the One who created the universe by speaking and whose Son is the Word of Life. But that’s to explore another time. God’s word to us here is simple: be thankful, obey, and cry out. His promise follows: he will deliver us. He also promises that we’ll honor him, a result that defines the right relationship with God.

We’re learning what it means to be thankful, to obey, and cry out, and we’re so glad for God’s faithfulness to deliver us. In that light, our circumstances don’t really matter.

Chemo continues

Susan is doing well after her 6th Carboplatin infusion this week when lab work showed her blood counts were okay. She continues to be strong, fairly independent, and with the right amount of sassy. We’ll be back to UCLA in May for her next MRI, when I expect she may shift therapies to Temodar + Accutane.

We were invited again to participate on a panel at UCLA’s annual brain tumor conference several weeks ago. My mom joined us for the Saturday session and our son Adam sat with Susan and I during the “Understanding the Family Experience” workshop. Mindful of sharing time with others on the panel, I did my best to summarize Susan’s situation in as few words as possible and help her to interact as well. I asked her to share what it’s been like to go from being a working mom to a brain tumor patient and relate how she’s been able to with her condition for nearly five years. When she had trouble focusing her thoughts and finding words, I was not too surprised or disappointed since that’s an honest example of her experience. Sometimes thoughts and words get stuck.

We shifted attention to Adam as I said how proud we are of him and his siblings for stepping up in courage and responsibility when our world was turned upside down. He spoke well. One thing he shared was how glad he was that I had been honest with the kids from the first about their mom’s illness and its uncertain outcome. That approach had been validated at an earlier workshop for children of parents with cancer – it’s best for parents to be forthright about this stuff because kids are perceptive anyway, and can handle even hard things when the family stays close, loves well, and keeps communications open. Adam publicly complimented me on taking good care of his mom. He publicly received an immediate raise in his allowance.

The brevity of the hour became apparent after the other panelists shared and we had just a few minutes for questions from those in the room. One mom and caregiver whose husband has a brain tumor asked us what we do to stay positive. At the core of her question was, “Is there hope?” I desperately wanted to answer, and waited my turn. We heard about having a hopeful, forward-looking focus from one caregiver who tells her husband things like “When you get better” instead of “if.” We heard from a brain tumor survivor in the audience who shares the joy of guitar and banjo music with other patients at a treatment center. I was about to have my turn when the moderator interrupted, “I’m so sorry that’s all the time we have. People are beginning to arrive for the next workshop.”

I wish I could have said a word about our hope. I wish I could have spoken about God – that our hope is from God and is in God and is God. Our hope is as real as a positive word and as uplifting as music – but more so. Our hope has been infused in us by the same One who inspired the psalmist to say, “In the Lord I take refuge. How then can you say to me: ‘Flee like a bird to the mountain…When the foundations are being destroyed, what can the righteous do?’” His response in Psalm 11? “The Lord is in his holy temple, the lord is on his heavenly throne…” Our circumstances do not matter. Cancer does not matter. Death and dying do not matter. The Lord is on his throne – everything’s still okay.

Of course we hope and pray for healing. Of course we stay positive. Of course we celebrate simple joys with others. But these will not save us – only God can, and has. Susan knows where she’s going, and even in her improved condition, she joyfully and peacefully anticipates heaven. More than hope, we have heaven on deposit. Already its citizens, we’re just passing through. I wish I could have said that, but I guess I just did.

MRI and mixed results

Susan’s two-month MRI on Wednesday showed mixed results. The area of tumor growth in the right hemisphere appears unchanged (that’s good), while that in the left has increased since November (not so good). The fact that changes on the left side are noticeable compared to November and not January means it’s growing slowly (good again).

Functionally, her overall improved state of the past few years continues. People regularly remark how well she’s doing. And her independent streak thankfully remains. She’s able to get out of bed and most seats without help. She ambles around the house with good balance even without her cane, and enjoys kicking Daisy's ball down the hall for regular doggy-therapy. She even gets from bed to the bathroom without my help most nights. If I’ve observed a cognitive decline recently, it’s only slight. So we’re grateful.

With five monthly infusions of Carboplatin on board, she’s handled it well except for a recent hit to her platelet counts. February’s injection had to be delayed a week when platelets dipped into the 90s. In August they were 315. She squeaked by this week at 100, the exact minimum needed for chemo.

We discussed continuing Carbo for the time being, and possibly resorting back to Temodar (her initial chemo in 2007) in combination with Accutane, a novel therapy that’s been found effective with some patients like Susan who are missing a certain protein on the molecular level. Her oncologist watches Susan closely. In spite of the cautious outlook, we remain happy and hopeful, and are doing well.

My new line of work as a writer with a mutual fund company has demanded more of my time and energy over the past six weeks, a move made possible since Susan has been doing so well and since we have such helpful friends and family to fill in the gaps. While I no longer have the luxury of taking her to every lab appointment, I’m even delegating chemo visits and some doctor appointments. Susan’s parents, our kids, and our friends are amazing and continue to support us in vital ways. Susan’s strength, gracious spirit and hopeful outlook make it all that much easier. We thank God for each day and always are grateful for his love and faithfulness.

Stable MRI, more chemo

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

Not surprisingly, her MRI was stable. We’re grateful to see no indications of recent growth, although Dr Nghiemphu is intently watching a couple of areas. Our full schedule on Wednesday featured labs, MRI, oncology update, chemotherapy, and meeting more brain buddies. Susan has done well after three monthly infusions of Carbopatin. She had only slight fatigue after the first two, with a few days of Zofran to prevent nausea. Her good lab results so far show her body has handled the chemo well.

The neurological exam that accompanies Susan's oncology visits is standard practice for brain tumor patients. “Hold your head still and follow my pen with your eyes.” “Squeeze my fingers.” “Lift your knee while I press down against it.” “Other knee.” “Smile.” “Frown.” There are probably a dozen questions and commands in all, including spelling “world” then spelling it backwards. (Even I have to think about that one.) Some of the questions deal with orientation of place and date. Susan can struggle with these, made even harder with word-finding trouble. But her cleverness came through this week when she was asked, “Where are you right now?” Her pause told me the answer wasn’t coming easily. Then she looked 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 our situation 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’ve adjusted to our circumstances, it’s still somehow hard to believe what’s happened. A week ago or so I recognized Dr Javahery coming out of a medical office building as we were about to enter for an appointment. He’s the neurosurgeon who performed Susan's emergency brain surgery in 2007. We’ve had no contact with him since then. Amazingly, he remembered Susan; that he did her resection on July 4^th, that we’d had to move quickly against her worsening condition, and that we sought treatment next at UCLA. He regrets not being able to operate under more controlled conditions, but said he had to de-bulk the tumor or she would have died.

Time did not permit us to relate to him what she’s been through, but it was enough for him to know what patients like 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 out the candle and fans the bonfire.” Having nearly lost Susan altogether, its truth resonates. Our brief and lovely encounter allowed us to encourage each other and made Susan and I glad to greet and thank him. The care of doctors like him has been a gift.

As I consider how our brain tumor experience has been transforming us, I’ll share those thoughts next time.

Chemo again

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

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

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

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

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

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

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

Steroid taper continues

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.

Last dose of CCNU, and Susan's godly burden

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

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.

Waiting for improved blood counts

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

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

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.

Thanksgiving

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.

Chemotherapy, Round 3

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.

Looks like more tumor

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.

A fall and a fracture

Following Wednesday’s chemotherapy treatment at UCLA, Susan took a hard fall in the bathroom at the oncology clinic. I had lifted her from her wheelchair and had her standing steadily while holding the grab bar when I turned a few steps away to throw something in the trash. I saw movement out of the corner of my eye and turned to see her falling backwards, landing hard on her bottom and knocking the back of her head on the wall just behind her. It was a moment of surreal, slow-motion helplessness for me and one of intense pain for her. She slumped to her right side and cried. The staff heard the impact from outside and came to help right away. While the nurses examined her, we thought it best to call paramedics out of concern for back or brain injury. The medics arrived within several minutes and did their best to move her onto a backboard and fit a neck brace without hurting her, but it was excruciating. Everything hurt.

She was transported around the block to the ER at Ronald Reagan UCLA Medical Center and admitted about 3pm for a CT scan and spinal x-rays. They gave her something really strong for pain that took away the “everything hurts” sensation and allowed Susan to rest a bit. Doctors said the CT scan showed no head trauma or bleeding and said the spinal x-rays were negative also, a great relief. When it became clear she couldn’t tolerate transferring or sitting for a car ride and that I might run into trouble attending her at home, she was admitted to the hospital around 2:30am for observation and pain management.

We learned over the next two days that Susan does have a compression fracture on L-1, her first lumbar vertebra. The orthopedic surgeon said it’s not severe (could have been worse); and ordered a spinal CT scan to check for bone fragments (there are none). She’ll need to wear a brace to restrict her movements when she’s not lying down. She also had a second spinal tap on Friday to drain fluid for hydrocephalus since she was going to need another one soon anyway, and began antibiotic treatment for a raging bladder infection we discovered prior to Wednesday’s chemotherapy. Too much fun for one girl.

After evaluating her condition with the medical team and physical therapists, we decided Susan needs to have rehabilitation in a skilled nursing facility before coming home. That’s a new area for me in decision-making, so our nurse-friend Brenda Carruth came through with some excellent referrals from the discharge planner at Long Beach Memorial. I checked them out on Saturday chose Alamitos Belmont Rehabilitation Hospital in Long Beach. Susan will be transferred there Monday for what may be a stay of several weeks to a month or more depending on her progress. They seem very focused on rehab, so I think it will be a good environment for her to heal and get stronger. Susan may lower average patient age by about 20 years when she arrives. They play bingo there.

When the medics were attending Susan in the bathroom on Wednesday, our oncology nurse Nikki told me pointedly her fall was not my fault. Her words lifted a burden from me. I thanked her. I had not caused her to fall, but I had not prevented it either. It happened so fast – and she fell hard, almost like someone pushed her. It was one of those “if only” moments you wish you could take back and do differently. Since Nikki is both observant and caring, she saw whatever expression I had on my face and took the burden from me. I decided to agree with her since beating myself up with guilt isn’t going to help anything. Susan has had a complicated illness, so we just have to deal with it. Once again, we have felt the vast support of our family, friends and church over these past days. We know God hears every prayer and will continue to meet every need. We always thank Him for his goodness and mercy.

A trip to Colorado, new chemo begins

Tue 05/27/08
We returned from a terrific visit to Colorado where we attended the wedding of our niece Heather Romberg and her new husband Nathan Tebedo. They had a beautiful courtyard ceremony overlooking a picturesque valley near Palmer Lake in Monument CO. Lexie and I had the privilege of singing our first duet together at their reception. Susan had a bit of a trip-buster brewing on Thursday afternoon due to swollen ankles that raised the concern of blood clots. After a hastily-arranged ultrasound revealed no clots, she was cleared to travel. The swelling is caused by her high-dose steroids.

The whole weekend was another great family event that reunited Rombergs, Shipleys, Underwoods, and others, including lots of young and young-adult kids. We also had some precious time with Susan’s cousin Kelly (O’Toole) and James Dykema and my cousin Stephanie (Joeckel) and Gabe Arcuri. Colorado’s stunning views are everywhere and an obvious reason why so many want to live there, although my uncle Ray Joeckel said he moved from CO to CA after forty years because you don’t have to shovel rain.

I took part in a couple of “how’s it going?” conversations concerning Susan’s condition, one with Dwayne Underwood at Brian & Nancy’s and another with Stephie and Gabe on Sunday at their home in Brighton. Dwayne happened to be in LA the week after her first surgery at LB Memorial and spent many hours over several days in attending his lifelong friend. My cousin Stephie and Susan are both breast cancer survivors and share a special kinship in their experiences. It was good to be connected with them again. We’re so grateful for their love and support.

While we were in Colorado on Saturday, I received a call from Floyd DeBoer letting me know his wife Joanne’s brain cancer has continued to advance. She is on hospice care and may pass away any day. Floyd thanked me for our calls and visits and wanted to let me know how much they helped Joanne and him. He said she’s sleeping most of the time and not able to communicate much. He said even in this state she’s still here, and he’ll miss her terribly when she’s gone. We prayed together on the phone and I hoped we could see her at least on more time. Susan and I were able to visit them tonight, meet some of their family and pray together. We were so impressed to see how Floyd is trusting God with the outcome and how the peace of Christ is present with them for strength.

Wed 05/28/08
This was a big day scheduled for Susan at UCLA with a 7:30am MRI, a 9:00am blood draw, a 9:30am neuro-oncology visit, and an 11:00am chemo infusion. The day went well overall with good MRI results and a smooth chemo infusion. The nurse couldn’t get any blood return from Susan’s new port catheter, so we had to revert to a stick in the arm from the phlebotomist – a point of confusion for Susan since the reason it was implanted was for blood draws and infusions. We were told that once in a while a new catheter doesn’t work properly the first time. Later, a nurse got it flowing both ways, so we should be in good shape for next time. The good news from our visit with Dr. Nghiemphu is that the tumor has not grown since over the past month. The high-dose decadron has done its job to counter swelling, but it’s only a stop-gap measure until the CPT-11/Avastin therapy begins to work.

The chemo infusion is quite the process – saline to flush the line, heparin to prevent clotting, Zofran for nausea, and then a bag of Avastin followed by a bag of CPT-11. The whole deal takes about 3 hours. We were told to watch for possible side effects like bleeding and high blood pressure with Avastin and nausea and severe diarrhea with CPT-11. Both drugs can lower blood counts because the production of blood in the bone marrow gets suppressed. Fewer white cells (neutropenia) compromise the immune system and can lead to infection; fewer red cells (anemia) can increase fatigue; and fewer platelets (thrombocytopenia) prevent clotting and can lead to bleeding. Now we appreciate how mild the side effects of the oral Temodar were. Aside from the fact that it cuts off blood flow to tumors, one thing I like about Avastin is that its generic name (bevacizumab) reads about as easily backwards as it does forwards (bamuzicaveb).

In a surreal moment on the 405 freeway near Culver City, John McCain and I waved at each other today. Traffic was crawling on both sides of the freeway as we moved southbound in the left lane at about 4pm. I saw a CHP motorcycle escort creating space in front of some vehicles across the low wall in the opposite northbound lane. Knowing McCain is in LA today, wondered aloud to Susan if it could be his motorcade. I lowered my window and we slowly passed several CHP and dark sedans filled with serious-looking men in suits. In a moment, as we paused next to a Chevy Suburban without darkened windows, I found myself exchanging glances with the candidate behind our respective sunglasses. I waved at him. He waved at me. Then we moved along. A charter bus brought up the rear of the procession. Only in LA, I guess.

We were so saddened to get an email from Jayne Nord today saying Jeff’s brain tumor has continued to grow in spite of the latest chemo treatments and there is nothing more the doctors can do. They are recommending hospice care for Jeff and have estimated his survival at a couple of months. This news just took our breath away. It’s just crushing. We love our friend Jeff and his wife Jayne and their children. We commend them to God while continuing to ask for a God-glorifying, miraculous healing if that’s His will. Even though heaven is far greater, it’s hard to accept the end of the fight for this life. We pray for mercy and peace.

A disappointing setback

The MRI today did not bring good news. The scan showed significant brain swelling in the left frontal cavity where Susan’s tumor was removed that has pushed the left hemisphere across the midline. That explains why she’s been struggling so much. Dr. Nghiemphu showed us the views done with IV contrast where there’s a lot of contrasted area in the cavity on the left and the “remaining” tumor site on the right, explaining it’s probably tumor resurgence. She said the amount of change over the past six weeks is cause for concern.
While we could push to get Susan on a clinical trial like the brain cancer vaccine/immunotherapy at this time, the doctor would like to see her begin treatment with a chemotherapy called CPT-11 plus a biological agent called Avastin. Avastin was developed for colorectal cancer and has been found to cut off the blood supply to brain tumors. It’s been approved in the USA and is still in late clinical trials elsewhere. The CPT-11/Avastin combination is now the most common 2nd line of treatment for brain tumor recurrence and is the same one our friend Jeff Nord is having now. Since it’s an intravenous program, she'll have infusions every two weeks at UCLA beginning in a couple of weeks once it’s approved by our insurance company. We're hopeful the Avastin will do its thing to cut off the blood flow to her tumor and we’re hoping to see relief of symptoms in the next few days as she goes back on the anti-swelling steroids for now.

We've had the blessing of stable improvement for five months, so this turn is discouraging. This change is hard because it seemed like Susan’s stability might continue indefinitely. Today we were reminded how aggressive this type of cancer is. But God's presence is life-giving, His faithfulness protects us, and His gift of hope sustains us always. Just today, our bad news was tempered with two generous and anonymous gifts (one by mail, one by the church offering plate), some gift cards for dinner, and an offer from the drug company to pay for Susan’s Avastin if our insurance company won’t. We're so grateful for our church family and for the kindness of caring people. We are holding to God's unchanging hand.

Yet another hospitalization

Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.

Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.

Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.

We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.

Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.

Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.