A see-saw week

The aftermath of Susan’s bleed and clot (officially, hemorrhage and hematoma) has been tough for her. I did a little research and realized how serious a bleed can be. Sometimes caused by injury, stroke, or aneurism, or a tumor in her case, the symptoms include what she experienced – weakness on one side of the body, fatigue, confusion, lethargy, nausea and fever. It can also be fatal. I also learned a bleed kills brain cells. We don’t know the extent of any real damage from Susan’s bleed, but it’s made its mark. The best way I can describe it is that she was knocked down a few notches and seems more confined to margins of frailty. She’s not bouncing back as quickly as before and needs lots of rest. A difficult spell may persist for a day or more instead of a morning or afternoon.

Understanding Susan’s “new normal” or baseline condition since the bleed occurred has taken some adjustment and has led to some alarm. Last Monday, she resumed a vigorous occupational therapy session that involved a couple of hours of activity and exercise. Tuesday she was out of it and could barely function. Was the bleed progressing? Dr Nghiemphu said Wednesday the only way to know would be another scan, so I scheduled a CT scan for Thursday. Meanwhile, Susan had improved a little and had another o/t session on Wednesday. Thursday she was pretty tired again. The ebb and flow of her condition and not a continual decline led me to believe the bleed had not progressed, but that therapy was making her extra tired for an extra long time. The scan results on Friday bore that good news, showing no active bleeding and the ventricles beginning to resolve. The doctor commented again on how big the bleed is. Susan’s MRI tomorrow will reveal more; but right now Dr N does not believe she’ll need surgery and will continue to have ups and downs until it resolves completely.

Saturday brought one of the downs with severe left leg pain, concern about another blood clot, and some instructions from Dr N. Susan could hardly walk due to pain and needed to use her walker again for stability. Some meds gave relief and local heat seemed to resolve it overnight. Sunday brought an up day as we were able to employ a couple of well-placed nap times and manage going to church and having a birthday brunch for Susan’s mom at Knott’s Berry Farm. Susan did well all day.

Susan’s condtion has resulted in the rehab team’s recommendation to discontinue treatment at this time. She’s presently not able to handle the several hours of daily activity they require for aggressive therapy, so she’ll step down to a less strenuous level through a home health agency. I accept that it’s a better use of everyone’s time and will preserve the remaining number of hours insurance will cover this year for Rehab Without Walls. Perhaps she can restart with them again in a few months.

I asked Susan to be my Valentine on Saturday – she said yes. I was a little worried there. She said I had asked nicely and she’d consider it. Then she accepted. I was glad since I’m not sure what I would have done with the flowers and nightgown otherwise.

With over a year and a half into this journey, life continues to be surreal when I consider it. Sometimes it doesn’t seem possible that Susan has a malignant brain tumor, besides the surgeries, the treatments, the complications, the hospitalizations, the mini and major crises. And sometimes it doesn’t seem possible that this is normal life now. It helps that her prevailing attitude is gracious, hopeful, upbeat, and playful. The uncertainty of the outcome is greater than ever; but the reality of God’s provision and faithfulness has never been clearer. We could not hold up without Him.

Janet Buccowich update

Since I spent the night in Susan’s room on Monday, I was able to walk across the plaza at 8:30 Tuesday morning to accompany my mother on her consultation appointment with Dr. Liau, who is also Susan’s neurosurgeon. (Maybe I’ll ask about a volume discount or frequent flyer miles.) Mom was diagnosed on a fluke when she was a radiology secretary at Rancho Los Amigos Hospital in Downey. They’d just installed their first MRI machine and were trying it out on the employees. To everyone’s surprise, the radiologist noticed a small, benign tumor in Mom’s occipital lobe – a meningioma. These tumors typically grow slowly, about 1-2 mm per year. Now Mom’s tumor measures about 2.5cm by 3cm and begun troubling her with small visual seizures, balance problems, and perhaps some affected thinking and memory. Treatment options are more limited for brain tumor patient in their 70s, so having surgery is not such a clear-cut decision.

Dr Liau discussed Mom’s recent PET scan and confirmed her tumor is not fast-growing or malignant. (The scan tests for glucose that reveals tumor growth – sugar feeds tumors.) Her treatment choices are these:

1. Focused radiation surgery (like gamma knife). This would stop the tumor from growing, but would not remove the mass or whatever symptoms it’s causing. At 3cm long, Mom’s tumor is at the upper range for effective radio surgery. Radiation has side effects to consider.


2. Craniotomy and tumor resection. This would be traditional brain surgery that would remove the tumor, but is an invasive procedure that is not tolerated as well in older patients. Side effects for Mom could be some visual loss and a long recuperation period, among other things.


3. Medication for brain swelling and seizures. This would be a continuation of what Mom is doing right now, treating symptoms, but would not get rid of the tumor or stop its growth. Most people with meningioma die with it and not from it – but Mom should expect any symptoms to continue and worsen as the tumor continues growing slowly. If she chooses this option but wants surgery later and waits too long, the tumor could become inoperable due to age. Meanwhile, the Keppra and Decadron she’s taking have considerable side effects also.

The good thing is my mom has a period of several months to test-drive the third option while she awaits her next MRI and neurosurgery consultation. We’re praying for her complete healing in the meantime, and for wisdom in making treatment decisions later if her condition persists. We welcome prayer for Janet Buccowich and ask for God’s mercy.

Gaining ground at home

It’s great to have Susan home again after an eventfully long week that somehow passed quickly on recollection. For Susan to arrive at the brink of another brain surgery so quickly and have it postponed just as fast exhausted me with upheaval. The past week was a bit of a crash. Susan was wiped out too, but more because her brain has been burdened with the intrusion of a three-inch hematoma. I’ve been watching her closely at home in case of fever or behavioral decline that would tell us the bleed was worsening. Thankfully, she’s been stable. Stable, and tired. I hadn’t been sure how much of her weariness was due to the bleed or to not resting well for seven days in the hospital. I spent the night there last Monday. A hospital may be a great place for people to help you get well, but they sure don’t help you rest Between nurses checking vitals, testing blood sugar, and giving meds, and doctors doing rounds at 6am, I bet Susan didn’t go two or three hours Monday night without someone waking her up. It wasn’t as bad as waking her up to give her a sleeping pill, but it was close. At any rate, whether from the brain bleed or lack of sleep, she had reason to be wiped out.

Fortunately, she’s improved a good amount at home. While she took a neurological hit with this episode, she didn’t suffer physically – like last summer’s drawn-out rehab. Her legs are strong. She’s already graduated from walker to cane again. Susan still needs a couple of daily 2-3 hour naps; but her waking hours find her energetic and in good spirits. I realize our visit with the surgeon on the 24th that will follow next week’s MRI could have us preparing for surgery again, but I’m asking the Lord to take care of the bleed in the meantime and go ahead and get rid of all cancer while He’s at it. Our constant prayer is for healing, strength, and restoration. We keep asking with faith because we know what He’s capable of doing, and we trust His sovereign will in all things. We ask our family and friends to continue lifting up this need and we thank you for praying.

Coming home

It appears Susan's brain-bleed episode and hospitalization will have the best possible outcome - no surgery, no infection, and home on Tuesday. We are grateful. Today the neurosurgery resident said all of Susan's labs were negative for infection so far, with the remaining fungal culture due this evening and expected to be clear as well. Susan has been stable with some mild neurological symptoms including fatigue and right-side weakness. Overall, this event has caused a bit of a cognitive setback as she's functioning at a notch or two lower than several weeks ago. We're hopeful she will rebound again when therapy resumes at home later this week.

Susan will return in two weeks for a followup MRI and evaluation. Surgery is not yet ruled out as that visit will mark the earliest opportunity to operate safely after her last dose of Avastin. If Dr Liau thinks the bleed is causing problems or has continued to grow, she may move to evacuate it. We'll see. As long as she remains free overnight of fever and other complications, she'll be home by tomorrow afternoon. We are thankful to God for His mercy and to our friends and family for praying us through once again. Your care and support are phenomenal.