A good-news oncology visit

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

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

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

Update on Janet Buccowich

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

Just wanted you to know that mom is doing fine at home. Rest continues to be her biggest ally. Most things are back to normal, but she is still unable to get herself out of chairs unless they are quite high, and her feet swell if she doesn't keep them elevated enough. These are still effects from the steroid. She is on a lesser steroid until she can see the endocrinologist on Tuesday, and hopefully begin a taper off. Once she is off of that it should be smooth sailing on the way to complete recovery!

The high point of her week this week was the shower on Tuesday. If you've ever been in the hospital or even out hiking/camping you know how good that feels! The other high point was being able to dress in clothes and go out yesterday (even if it was only to the doctor and it pretty much wiped her out for most of the day). She is getting stronger daily, able to walk a little farther and stand a little longer than the day before. Of course, by night time she is pretty tired. Her breathing is also much better. Seems that she only gets out of breath now with exertion and it's not that breathless kind. So she's coming along quite well!

Hope you all are doing well! Thanks again for your love and prayers! God is good! More later! Love, Becky

Improvement, UCLA Brain Tumor Conference

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

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

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

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

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

Janet Buccowich hospitalized again

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

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

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

Lousy infection!

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