A God thing

I was feeling pretty sheepish on Wednesday. Earlier this month, I had urged Susan’s infectious disease doctor we should try to discontinue the anti-fungal Fluconazole since she’d been on the drug for a year and a half, and meningitis didn’t appear to be a problem anymore. The doctor agreed and told me to watch her closely for fever, stiff neck and other symptoms, and get to the ER without delay if these develop. Her last dose was January 13. Then Sunday’s flu became Tuesday’s meningitis. We found ourselves in UCLA’s ER with meningitis symptoms, a spinal tap, a chest x-ray, a CT scan, and the whole infectious disease dog & pony show. Nice going, Mike. I sort of wondered whether someone would scold me and make us pay cash. Or put me in UCLA hospital jail. I wondered if a hospital jail looked like a mall jail – not that I would know.

Then sometime in the wee hours of Thursday morning as I waited with Susan in ICU with her newly discovered brain bleed, I discovered a God thing. She probably doesn't have meningitis, but something more menacing. What if God prompted me to get her off Fluconazole so we’d be extra vigilant and not miss finding the hematoma and getting it treated? To me this is so typical of Him. He loves to leave his fingerprints on the circumstances of our lives so we can recognize His presence once we have a little perspective. I’m thrilled and thankful He’d work it out this way.

Meanwhile, Susan and I have been feeding off of generous portions of peace. I recall answering the oncology nurse who had sent us off to the ER the day before when she commented on how shocking it was to learn of Susan’s bleed. I said we’re all in the Lord’s hands and said something like everything will be ok. She remarked about our faith and said she’s observed that people of faith tend to do well with cancer crises and complications. I said it’s peace, and it’s a gift. She said, “yeah that’s it isn’t it? It’s peace.”

Relief and perspective

It's hard to know where to start explaining what happened today. We went from anticipating Susan’s brain surgery with all of its concerns to learning it would be postponed and waiting all day for a regular bed to become available so she could be transferred out of ICU. It’s all really good news and brings great relief – and makes my head swim. We’re thankful to God for answered prayer. It appears Susan will ride out this episode with no need for an operation, and it appears her bleed (or hematoma) will become absorbed in her brain over the next month or so, kind of like a bruise. Who could ask for a better outcome? There’s nothing like a reprieve from brain surgery to get your day going.

So what happened? Susan has two things at work – an obviously large hematoma discovered late Wednesday, and a history of infections that includes meningitis. Blood in the brain and meningitis have similar symptoms – fever, confusion, and elevated white count in the cerebral-spinal fluid. The infectious disease (ID) team rightly pursued the likelihood of infection given Susan’s history and symptoms. They suspected her L-P shunt was the source and should be removed. The neurosurgeon Dr Liau knew that if she removed the shunt, Susan would need a temporary replacement and an intracranial catheter (drain tube) would need to be placed surgically inside her skull. Dr Liau reasoned that if she’s doing a surgery to place the drain, she might as well do a full craniotomy and clean out the bleed. But yesterday when the ID team learned about the bleed, they reconsidered the need to pull the shunt because Susan’s symptoms could be caused by the hematoma alone. Late yesterday, when Dr Liau learned the ID team was comfortable with the shunt after all, and also that Susan’s last dose of Avastin was so recent and may complicate the surgery with bleeding, she dialed back the need to operate. Susan’s stable and improving symptoms overnight helped confirm the judgment. Still, my head swims.

The whole deal is a study in the decision-making process of medical specialists who need to share ever-changing, vital information and arrive at the best option for treatment. Dr Liau carefully explained the circumstances to me today when Susan was being taken out for her MRI and wanted to allay any confusion. She called me this afternoon with more good news – she did not see any tumor growth in today’s MRI, although the bleed itself could mask it. She’ll order a follow-up MRI in 2-3 weeks to check it again after the blood begins to dissipate. The lab tests for bacterial & fungal cultures will be available over the next several days, so clear results will allow Susan to begin discontinuing antibiotics as soon as tomorrow. She may have another CT scan on Monday to check for bleeding again. If the bleed has stopped, if there’s no infection, and if she continues to improve, Susan may be able to come home by Tuesday or Wednesday. She still was waiting for a regular bed when I left this evening; but all in all, this was a great day. God is good all the time.

Surgery postponed

Susan's craniotomy is being postponed this morning since her neurosurgeon was informed her last dose of Avastin was only 16 days ago. The drug prevents wounds from healing and needs to be out of her system for a longer period. Susan had a restful night, remaining stable with no neuro decrease. Slight facial weakness has not worsened. She'll be moved from ICU today and have an MRI that will disclose more about the bleed (vs abscess, vs tumor). The infectious disease team also re-evaluated the L-P shunt and lifted the urgency of removing it - they've suspected it as a source of infection. It's obviously a dynamic situation here, and a bit of a whiplash to go on-off for Susan's brain surgery. But I appreciate the need for a more measured approach for such a vital procedure. As always, we remain under God's care and timing. This day is another in the gift of life.

A rapid path to another brain surgery

It's been a wild few days. What began as flu-like symptoms for Susan last weekend progressed to persistent fever and cognitive decline on Monday and Tuesday. After getting blood drawn at the UCLA treatment center yesterday, concern about the return of meningitis brought Susan to the ER for tests instead of getting chemo. A routine CT scan revealed bleeding in her brain and moved her to observation and testing in the neurosurgical ICU. Infection may also be present. Susan's neurosurgeon Dr Liau evaluated the series of scans Susan had over the past 24 hours. The mass appears to be a bleed, but could be an abscess or even tumor growth - in any case, it needs to be evacuated. This will be Susan's third major craniotomy and will reopen the same incision and skull area as before. Surgery begins tomorrow at 7:30am and is expected to last four to five hours. Dr Liau will also remove her lumbar-peritoneal shunt, place a temporary drain, and add a permanent ventricular shunt later. Talk about a brain drain. Susan remains the world's most gracious patient and is ever the fighter. We trust God implicitly, continue hoping for the best, and are ready for anything. We are grateful for everyone's prayers.

Does the whole world have brain tumors?

My mom has a brain tumor – here are the facts: it’s a meningioma, and was diagnosed initially in the 1980s or early 90s. The majority of meningiomas are benign, or relatively harmless, since they grow slowly. That’s been true of hers. She probably told me when she learned of it; but strangely, I don’t remember it, possibly because she downplayed its significance. Most people who have a meningioma die with it and not from it. But it’s grown over the past 20+ years to about 2.5cm in size and evidently needs attention now. Just because a tumor is not cancerous or rapidly growing doesn’t mean won’t be troublesome. Mom has developed symptoms with vision and balance that probably are tumor-related.

The meninges are the membranes that surround your brain and spinal cord; and a meningioma can occur anywhere in the membrane. Mom’s is located near her occipital lobe, the region in the back of the brain where vision is processed, among other things. Following a consultation with a neurosurgeon near her home in Downey, she visited yesterday with Linda Liau, the UCLA neurosurgeon and brain tumor specialist who did Susan’s second craniotomy in August 2007. Dr. Liau agreed that the tumor has grown large enough to require some kind of surgical treatment. Mom will see another specialist soon to find out whether a gamma knife (radiosurgery) or an invasive surgery would be better. We’re praying for wisdom in treatment and for complete healing, and are asking others to pray for Janet Buccowich as well.

So, does the whole world have brain tumors? My mom is the seventh person with a brain tumor we know among our natural relationships. We’ve met several more brain buddies through the course of Susan’s treatment and learned of others of the celebrity variety like Ted Kennedy and Seve Ballesteros – but knowing seven people including Susan with tumors seems like a lot. It makes you wonder.

Susan is doing ok again this week in spite of persistent nausea and occasional vomiting. She’s nauseous much of the time and needs to summon some composure when it’s time to eat. She does better by having small portions of food throughout the day instead of fewer, larger meals. My latest chats with her oncologist will have us suspending CPT-11 for her next couple of chemo infusions since it’s the nausea culprit. Hopefully, her body will repair during the respite. Today we went up to UCLA/Santa Monica Hospital for a bone density scan, a special x-ray that measures how much calcium and other bone minerals are present and will reveal Susan’s risk for fractures due to osteoporosis. She’s already had fractures in her spine and upper arm, so something’s up. We’ll find out about the scan results in a few days.

My wife is in good spirits today – sassy, teasing, playful. She was dog-tired after we got back home this afternoon, but has been revived by a long rest. Right now she’s barking and growling at Daisy, our Jack Russell Terrier. She sounds pretty convincing, better than I do. I don’t know what she said in dog language, but she got Daisy pretty excited and barking back. They’re having a moment together.

Things are ok this week

I spent the day with Susan yesterday for her bi-weekly chemo treatment at UCLA. They’ve adjusted her anti-nausea medications the past two times to prevent the severe vomiting she had in December. It’s helped, although she got sick this morning. At least it hasn’t been persistent so far. She had a podiatry procedure on Tuesday to permanently trim the sides of her big toenails that were chronically curving into the sides of her toes, causing pain and swelling. I know her feet have been aching the past few days; but she hasn’t complained. I admire her toughness. She had a delicious speech therapy exercise today with Linda – making brownies. The speech part comes into it with reading and following a recipe. Brownies are a delightful language and are quite therapeutic.

After stopping the steroid Decadron (brain swelling) a week and a half ago, Susan also stopped taking the antifungal Fluconazole (fungal meningitis) this week. We consulted with her infectious disease doctor and decided to give it a try while watching her closely for the return of meningitis symptoms. We tried previously in the fall of 2007, but the infection came back and required a hospital stay. I pray her body is strong enough to fight it now so she can have a break from the meds. I have some concern about a report from her therapy team in this morning’s conference call. Over the past couple of weeks, they’ve observed a decrease in Susan’s endurance, task initiation, and appetite, and also noticed a slight left-side tremor. I haven’t seen the tremor, although I have noticed the lesser appetite, and expected it since she’s off Decadron. She seems to have returned to her more modest pre-brain-tumor eating. Her reduced endurance and initiation can vary with levels of fatigue, but could signal an emerging problem. So far this evening it’s taken her about 40 minutes to write two sentences in her journal as she struggles to see what she’s written and remember what she was going to say next. She’s tired – but I need to watch out for other trouble.

We met a new brain buddy two weeks ago in the 200 Building MRI waiting room at UCLA. She’s about 50 years old and is a five-year survivor of GBM, the same high-grade tumor as Susan’s. Following a seizure, emergency brain surgery, and a coma of some length, she came under Dr Cloughesy’s care and received temodar/radiation treatment. She has been stable for four years. As we connected immediately in GBM comraderie, she encouraged Susan to think as though the tumor is gone, get rid of negativity, and laugh a lot. She watches “I Love Lucy” reruns. Otherwise, she continues to work in her career and has no noticeable appearance of having had brain surgery or being on steroids. The scar on her right frontal lobe is only visible when she lifts her hair that’s combed over it in a stylish way. We were struck by her positive outlook and thankful for her encouraging words.

Later, after reviewing Susan’s favorable scan and while she was getting her chemo infusion, I began to consider life with her in the longer term, allowing my mind to imagine what our future might be like in five or ten years. I’ve been neither fatalistic (even though she has an incurable disease), nor blindly optimistic (even though God may heal her tomorrow). Instead, I’ve opted for balanced realism – hoping for the best, and ready for anything. But our new friend’s experience and advice had me casting my mind out further, hooking on to a fragile idea and letting the big fish run a bit as the line spun off the whirring spool. Maybe the new-normal of Susan’s life with GBM can be more or less permanent. Maybe the fullness of life to be that I’d written off as unlikely could actually happen.

Then I stepped out for coffee and passed our new friend at the appointment window with her husband. I heard her say with tears, “I didn’t think it would come back,” as she stomped her foot in frustration. They’d just reviewed her scan with Dr Cloughesy and discovered her tumor grew. After four years and some two dozen bi-monthly MRIs, it’s back. I offered them comfort as I watched the crushing notion come over her that brain tumor world is enveloping her again – chemotherapy, medical leave, more drugs, who knows. I was gripped by the contrast between her earlier confidence and her present frailty. It’s not that her lively counsel now rang hollow or was somehow dishonest. It was as real and true as her as 24 stable MRIs. It’s just that the thing – the issue, the cancer, the incurable disease – is always there. You can’t control it. You can’t wish it away.

Doing well in the New Year

Following a busy holiday season and no lack of demands on my time, I’m finally getting in an update. Susan has continued to make good progress over the past several weeks with therapy at home, more chemotherapy, and another good MRI last week at UCLA. Her scan on 12/30 once again showed brain tumor stability, a continuing trend since beginning Avastin/CPT-11 chemotherapy in June. Her chemo went better this time also with a different anti-nausea medication during the infusion - a relief from the drawn-out vomiting over the past several treatments.

Last month we had more news in the area of complications, a too-familiar theme for the past year and a half. Following a shoulder MRI the week of December 15, we met with orthopedist Dr. Bhalla to learn the cause of Susan’s chronic pain since October - a fracture in her upper arm bone or humerus head where it attaches to the shoulder joint. He officially diagnosed osteonecrosis (or avascular necrosis), which is the deadening of the bone due to lack of blood supply. In Susan's case, it's the result of being on the steroid Decadron for 18 months. Once again, as much as she needed to be on the drug to combat brain swelling, now she needs to be done with it. Following a long and slow taper schedule, she had her final dose last week. The good news is that as the blood supply improves in that area, her body should replace dead bone material with healthy stuff. Her recommended treatment is full-range physical therapy, a painful prospect for Susan. Ever the positive thinker, she said, "At least I don't have to wear a cast."

As we had hoped, Susan is making strides toward independence at home with the help of her caregiver Ana and her therapy team. She’s been doing several activities on her own again and has greater strength and initiation for tasks. It’s a busy and tiresome schedule, with her days often crowded with 1-2 therapy visits of a couple hours each plus bathing, mealtimes and exercise or a walk down the block. She made quite an impression on the oncology treatment center staff at UCLA when she walked in for a recent chemo treatment with her cane under her own power. It wasn’t long ago that I was wheeling her in and transferring her to a bed for her two-hour infusion, so the difference is striking. Susan doesn’t seem to have any quit in her – and I’m proud of her.

We enjoyed a wonderful holiday of Christmas with family and church, and New Year’s in the mountains and several feet of snow. This season of life brings changes to seasons of the year, and Christmas was no different. For the first time in probably 20 years, I did not sing with the choir for our multiple Christmas Eve services. I did manage to participate with our Holiday Chorale for Dinner Theater events and another concert, but that was the extent of my music output. It felt strange, but that’s ok. My time and energy have been focused at home. This year on Christmas Eve we had the opportunity to join my family at St John’s Lutheran Church in Old Towne Orange for an all-German service, their first in 50 years (except for the sermon – danke schön). My mom and cousin sang in the choir. The place was packed with people who knew the language, so the singing was rich. The German music and scripture along with the historic, hand-crafted altar and stained glass from Germany made it feel like we were far away from SoCal. We all missed Grandma Ellen who went to Heaven this year at age 100 and was herself an historic German artifact who surely would have loved to be there. After dinner at my aunt & uncle’s home complete with a Christmas goose, we made it to one of our services at Emmanuel and enjoyed Pastor Ken’s heartfelt sermon and the closing “Silent Night” by candlelight.

We had more family highlights this year, like our traditional Christmas Eve celebration with Susan’s family on the 23rd with creamed chicken dinner, cream puffs for dessert, a joyful gift exchange, and an overall relaxing evening. Our New Year’s holiday in Angelus Oaks provided a winter wonderland from four feet of snow that dumped the week before Christmas, most of it still remaining in the cold weather that followed. When a couple of interior cabin doors were binding at the top of the door jambs, I realized the 2-3 feet of snow on the roof was weighing things down a bit and realized I had a shoveling project to do. It was fun work. I’m glad that each time the shovel sailed off the roof I wasn’t holding on to it. USC won their bowl game, as did the other four PAC-10 teams. I didn’t see the Bruins in there anywhere.

One of the standouts of our holiday time was our Christmas morning together. Our exchange of wrapped presents with each other was a little leaner than in past years under the circumstances, but we continued a family activity that’s much more meaningful – sharing gifts of blessing and appreciation for one another. It’s a tradition we started after learning about it some time ago from our pastors, the Korvers. Each person took a turn having the family say how they’re thankful and why they appreciate them, one at a time. A rainstorm made it misty outside and it got misty inside as well. Susan’s parents joined us for the last part of our sharing. We all felt richer and more loved. I was grateful we could give and receive such gifts that will last.