Hopefully headed home

Yesterday brought good progress with Ativan tapered from 12  to 2 mg/day, the continuous EEG removed, and Susan feeling more alert. Late in the day we learned they’re considering discharge today, a most welcome report.

The attending neurologist feels comfortable her clinical seizures are under control even if she continues to have the small, unobservable ones. He also said not to be alarmed if she has one or two visible events during the day as long as they don’t lapse into a continual cycle. That’s good to know for the transition at home since life with seizures is a new experience for us.

Susan’s strength and will to improve amaze me. She always tries her hardest to get better; and I can see her even now pushing to be independent. Knowing her, I am not surprised by her initiative and would be concerned if she didn’t have it.

Then there’s her sense of humor, still intact. Yesterday, the attending physician gave her the routine brain quiz to check her status – “What is your name? When were you born? What is the date today? How many fingers am I holding up?” and so on. With seizures, drugs, and her usual aphasia, her answers this week ranged from disoriented to disconnected.

So I didn’t expect much when the doctor asked, “Where are you?” She rarely says “At the hospital” on the first try. Susan paused, smiled, and said, “I’m right here across from you!” Good one, honey. She laid that one on em' during a prior hospital stay, so she's still got it.

I won’t believe it until we have the discharge orders; but hopefully we’ll be out of here today.

Adrift in dreamland

Although I did not observe Susan having any seizures yesterday, the EEG recorded eight in a 10-hour period. The visible ones are potentially more dangerous to her body, so it’s good that the activity has been sub-clinical. She’s on Ativan round the clock to break the seizure cycles. It makes her sleep a lot – over four hours so far today.

I couldn’t imagine staying asleep while a nurse attached a cuff and took my blood pressure, but Susan did. She also slept through having her finger pricked for a glucose test, having the room cleaned, and having a neurologist view her EEG screen while conferring with me from three feet away. That’s enough to make a Buccowich proud – we who descend from a long line of semi-professional sleepers. 

All of this long winter napping has made for a quieter day since she hasn’t been roused enough for therapy. The Ativan effect is evidently quite contagious as sleep became my only activity for at least an hour. So vigorous was my sympathetic exercise that I need a little rest afterwards.

Susan has awakened at last and is in good spirits. She hasn't had any seizures that I noticed again today, so we'll see what the EEG reveals. There’s still no word on discharge. Thoughts of a jailbreak consume me. We're thankful for a world class health care facility with flat-screen TVs and for ESPN with college bowl games.

Seizures linger and so do we

This will be Susan’s fifth night in the hospital in what’s become an extended stay. The UCLA neurological team continues to monitor her seizure activity while trying to find the mix of meds that will be effective at home. Meanwhile, her seizures linger.

Following Sunday’s 20-minute study, she began a continuous EEG yesterday afternoon that recorded at least 12 seizures in about 18 hours, mostly during the night. I observed two before leaving at 10pm. The staff witnessed just two or three more, so evidently there’s a lot of seizure activity that’s sub-clinical, noticeable only in brainwaves. As a result, they’ve increased some anti-seizure drug doses and added another 24 hours to the EEG study. Since Susan made the EEG bonus round, the attending neurologist gave me one of his "No Seizures" buttons. Don't be jealous. Our first chance for discharge may be Friday – but I wouldn’t be surprised to be here another weekend.

We enjoyed visits on Christmas from family and friends bearing gifts. The poinsettia that caregiver Jackie brought adorns Susan’s window overlooking Westwood Blvd. Being together with loved ones lifted our spirits. This was the first time in our lives we celebrated our Savior’s birth apart from worship in church and festivities at home. In spite of some sadness at being so disconnected, being sequestered was good in a way. We were removed from the American intensity of Christmas and left with quiet reflection on Jesus birth. Even if we lose the holiday trimmings, God’s marvelous gift in Christ can never be diminished.

Today was Susan’s scheduled two-month MRI and neuro-oncology visit. Since I made sure her MRI on Saturday also followed the oncology protocol, she didn’t need the scan today. I think that nixed about $6k in medical billing. At 10:30 this morning I simply walked next door and chatted with Dr Nghiemphu about all the weekend test results while Susan slept.

She confirmed that Susan’s tumor is mostly stable. While this is good news, she’s concerned that seizure activity could indicate tumor growth that’s not yet visible by MRI. We know that GBM tends to advance with microscopic tendrils, so I share her concern. We went back to a four-week interval for Susan’s next MRI and will take it from there. This is no different than the past 5 ½ years with incurable, progressive brain cancer. She's made it this far. We hope for the best, pray always, trust God, and are ready for anything.

The rest of the day has been busy with visits from the usual staff plus occupational, physical, and speech therapists. At different times. Add the nutritional counselor, BP readings and blood glucose tests, and Susan’s pretty popular. She also graduated from bed and spent the afternoon in the recliner.

I’ve seen no seizures so far in over 8 hours; but she’s been on increased Vimpat and a double dose of Ativan this afternoon, which may be enough to ward off an LA earthquake. It certainly warded off wakefulness and ushered in a deep, quiet nap. I’ll spend my third night here tonight. We’re thankful for God's peace, everyone's prayers, great medical care, and loving family and friends.

Christmas with the Bruins

It’s Christmas Eve, so we’re on track for “Christmas with the Bruins.” Our friend Sheri picked up on that theme too. She's a UCLA fan. I told her this episode is sort of a 70’s style TV special but without the musical numbers, costumes, lavish sets, or celebrities. And it's at a hospital. Our friend Alecia said Jesus wears scrubs tonight.

This is our third hospital holiday, following 2007’s Independence Day brain surgery and Labor Day meningitis. I guess this Christmas seizure swarm means we’re working through the calendar.

We’re sad to be away from our kids this Christmas except for bedside visits after a 25-mile drive to Westwood. We usually have church together and a Romberg family celebration on Christmas Eve, followed by our morning gift exchange and a Buccowich family celebration on Christmas Day. We love our family time and we’re sad to miss it this year. We’re sad to have our traditions interrupted. We’re sad for all that’s happened to Susan and for the burden it is on our lives.

Whatever heartache we may feel in being disconnected from our family and in struggling with brain cancer, we’re thankful to God for the gift of Jesus. I understand them so little; but I’m amazed at the great things God accomplished to bring about the life and mission of Christ.

There’s a lyric in “Carol of the Moon and Stars,” from Bob Bennett’s brilliant “Christmastide” album. He writes, “Look up, see the chaos and precision of the Living God.” Wow. That’s a word for me. We’ve known so much chaos – illness and upheaval, loss and brokenness. But we also sense God’s precision – his purposes at work in our lives that are magnificent in scope and perfectly executed, just on time. We don’t know how it all works. We trust God who does.

We love his peace that helps us as we move under the chaos into the stream of his precision. It’s a big pile of hurt with a place of consolation underneath. It’s a jagged crust of despair hiding hope inside a warm, gooey center. It’s so like God to compel us to find him in his stillness while the world rages all around. It's just like he did when the King of Kings came to Earth in the unexpected perfection of a baby in the filth of a stable. Merry Christmas.

It's beginning to look a lot like an unusual Christmas

It’s Christmas Eve. We’ve been at UCLA Med Center since Saturday when Susan was admitted through ER for moderate seizures that increased in frequency, even with higher doses of her anti-seizure drug at home. Since seizures can be common with brain tumor patients, Keppra is prescribed to prevent them. Susan’s taken it daily since 2007 without event until now. In my prior blog post, I explain how this seizure swarm started.

Susan’s battery of tests over the past 48 hours included blood and urine for infection, MRI for tumor, EKG for heart, and EEG for brain activity. The MRI revealed no great changes such as increased tumor, swelling, or fluid.

Last night’s 20-minute EEG recorded two seizures. The first had the noticeable symptoms of Susan straining her head and eyes to the right while unresponsive. As usual, it lasted about a minute with no convulsions or loss of consciousness. The second was visible only on the spectrograph of brain waves. With that, the neurology team thought she might need a continuous EEG under observation in ICU to track the brain-wave-only events.

But today, the combination of Keppra and another drug called Vimpat seem to be working. Susan’s last noticeable seizure was around 6am. The plan now is to forego another EEG and see whether the meds are indeed effective over time. If so, she’ll go home with a new anti-seizure cocktail – and we’ll add seizures to her long list of brain tumor experiences.

Susan is more tired and confused than usual and has been a bit contrary, sometimes wanting to peel off her EKG wires or wanting to get out of bed and go somewhere. Mild rebellion doesn’t come naturally for a gracious soul like Susan. But such disorientation is the stuff of brain tumor world. Thankfully, that fog looks to be lifting. Most of the time, lucid moments and her upbeat attitude prevail.

It appears the medical team’s decision to test Keppra + Vimpat meds means we’ve turned the corner from the long discovery phase toward treatment and discharge, whenever that is. I hope to see her neuro-oncologist before we leave since we were scheduled for a two-month checkup this Wednesday anyway. We’ve already done the MRI. I expect the neuro-oncology visit will inform us with the big picture. 

For now, we wait. Why not? It’s still Advent today, a time of waiting. We thank God for his love and faithfulness in all things, and for his peace at Christmas time.

Seizure swarm

We're in ER at UCLA trying to get a handle on a seizure episode that started last night. I first noticed an odd non-response from Susan when a neighbor greeted us at Costco. At the time I chalked it up to aphasia since getting words out can be hard for her. But she was obviously seizing later when she had her head wrenched way to the right with eyes pushing right and was unresponsive when Adam was talking to her. It lasted 30-60 secs, then passed.

I thought some rest might help but called the doctor at 2am after a few more occurred. I gave her an extra Keppra tablet for seizure control and we upped her dose for the morning. Dr Kong said we would chat again then. Susan's been on anti-seizure meds for 5 1/2 years without any episodes except after initial brain tumor diagnosis.

Last night she had one every 60-90 mins, so it was not restful. We slept late. After more Keppra and breakfast, the seizure intervals shortened to 15-20 mins. The doctor said we should go to ER for other meds to stop the process.

After 8 hours, an MRI, and other tests in ER, we're waiting for Susan to be admitted to the hospital. She's still had about 8 or 9 seizures while on the stronger Ativan. She's able to see and hear as they occur, but can't speak until they're gone. She's moderately disoriented and very tired.

The initial MRI report shows no swelling or fluid changes compared to October but evidently some tumor growth, which is no surprise right now. She'll be admitted upstairs hopefully soon. She's also scheduled for an EEG to study her brain waves.
The doctors want to get the seizures under control and arrive at a firm idea for the cause. For now, both of these elude us. Actually, so does the hospital room.

Some highlights of the day: Susan joking around with Austin right after a seizure ended; Susan joking around with me whenever she could; Susan and I hugging and saying "I love you" a lot; and me saying "I'm a writer" when the admissions clerk asked for my occupation. We thank God for his gift of life and continue to trust him in all things. We thank you for your prayers.

Drug reaction interrupts chemotherapy

Susan has been dogged by a persistent drug reaction that began with a big eruption in August along with an ER visit and now shows up daily in a more mild form. We initially suspended one of the drugs she took in combination with chemo, and have since dropped two more pain management meds to ease her system. Still, each day she gets welts and red blotchy skin on her trunk and extremities. They’re painful and itchy, but are relieved with Benadryl and Zantac.

When she was due to have chemo again several weeks ago; Dr Nghiemphu said we should wait until the rash clears completely before proceeding, if at all. Unfortunately, the reaction persists, so she may have had her last dose of Temodar.

The fact that her initial reaction so closely followed her chemo dose in August made it clear that’s what caused it. That type of reaction is typical of long-term Temodar use when a person no longer tolerates it. But to have a chronic rash each day for this long suggests another cause that for now remains a mystery.

Most brain tumor patients pass away before long-term drug reactions have a chance to occur, so we’re thankful to have such a problem. God has sustained her life and continues to work out his purposes along the way. We’ll have Susan’s next MRI and oncology visit after Christmas. Of course, we hope for continued tumor stability, and will discuss our options to resolve the mysterious rash.

Meanwhile, Susan continues her journey in remarkable fashion with the help of loving friends and family who care for her. She enjoys daily walks, still needs to rest a lot, and thankfully takes initiative to do things for herself as much as she can.

She’s constantly joyful. Joy is her natural bent, her first response, and no doubt a big reason for her survival. She’s incurably positive. Optimism and hope run deep in Susan, keeping her strong and stable. She’s spiritually enthused. She maintains a readiness to encounter God at any time; so spiritual songs and topics easily move her soul. She likes to close her eyes and drink in what’s happening around her, enjoying music or a sermon. And sometimes she’s just sleeping.

She’s also constantly playful, which probably wouldn’t happen without her joy, optimism, and fine-tuned spirit. But she loves to play at any moment – and her messing around with the kids and I are a sure sign she’s feeling well. Each of us has our lively routines we do with her. Most of them are precious and personal, and they help us stay connected. Here’s one I’ll share: lately she’s been fond of gripping my hand tightly when I help her sit down, then not letting go. She has quite a grip, but not one that can last when I tickle her with my free hand.

One night recently as I helped her into her recliner, Susan doubled over in pain, moaning loudly. She was obviously distressed and couldn’t talk or respond when I asked her what’s wrong. She continued as I asked her what happened, what was hurting. I couldn’t imagine what had happened so suddenly, so my mind was racing to figure it out. Just as my internal emergency alert system was fully engaged, she lifted her face from her hands and said “A-boo!” with a huge smile. She nailed me. She got 500 points for her acting, 500 for her timing, and a 250-point opportunity bonus.

Best scan ever?

We were back at UCLA this week for Susan’s scheduled MRI after a two-month interval. I suspected from her current strength and lack of symptoms that we’d have a good result. (She does have continual headache. Her strength is stunning to me.)

But we were amazed and thankful to see not only tumor stability, but some actual tumor regression. It’s a slight change, but when comparing Susan’s current scan to one nine months ago, there was an area of tumor on the left side that’s no longer there. We looked at the particular spot on the new scan and saw brain instead of contrast-enhanced tumor.  

Reasons not to get excited: 

1. Comparing to a nine-month-old scan is not as significant as a two-month scan.
2. Comparing two MRIs is not perfect because the head isn’t positioned identically each time, so the image layers don’t always match. What appears to be missing may just be a hidden layer on the scan. 
3. There are still other areas of visible tumor in the left frontal lobe and across the mid-line.
4. Medically speaking, the tumor type in Susan’s brain is progressive and incurable. 

Reasons to be thrilled: 

1. I realized with Susan and Dr Nghiemphu that after probably 50 or so MRIs over five years, this is the first time anyone’s ever mentioned the word “regression” while we’re staring at the images.
2. In brain tumor world, stability is great, so regression is awesome. It’s the opposite of growth.
3. We don’t know why Susan got brain cancer, why death was near in July 2007, why she’s had so many complications, or why she’s a five-year survivor when the average is about 18 months. But we know God is keeping us in his care and for his good plans.

We left UCLA in a little lighter air – released to come back in another two months, continue monthly Temodar chemotherapy, and live our lives in the meantime.

In early October, we attended the annual benefit for the UCLA Neuro-Oncology Program called Art of the Brain after receiving Dr Cloughesy’s invitation. The evening mingles supporters, patients, and caregivers in an outdoor reception among sponsored food tables followed by an inspirational program at Schoenberg Hall.

It was wonderful to meet other patients, reconnect with ones we know, and see the staff in fancy clothes instead of lab coats. Susan and I especially enjoyed greeting donors and thanking them for their support since we directly benefit from their gifts.

In Dr Cloughesy’s remarks, he acknowledged that Art of the Brain raised some $5 million for UCLA brain cancer research over 13 years. Meanwhile, brain cancer is more frequently becoming a chronic condition with better outcomes and extended life expectancies. He also said, sadly, these advances can be of little comfort for the person whose disease can’t be stopped in spite of everyone’s best efforts. The evening was a testament to the dedicated medical professionals, generous supporters, and remarkable survivors that make up brain tumor world.

www.artofthebrain.org