Therapy and exhaustion

This week has been marked by periods of exhaustion brought on by Susan's daily routine of therapy and exercise. The maneuvers she does to rehab her broken upper arm bone have been improving her range of motion but also result in a good deal of pain afterwards. After hitting it hard for a day or two, she'll have a day when she's unable to do much. These low points can become a bit discouraging for her; but she's usually upbeat and ready to go again after a day of rest.

I brought Susan to the doctor this week to investigate shortness of breath she's been experiencing recently. We're concerned about a blood clot moving past her implanted IVC filter and into her lungs. A pulmonary embolism would not be a good thing. She had a v/q scan of her lungs (v/q means ventilation/perfusion - go figure) on Tuesday at Long Beach Memorial to measure breathing and blood flow. We had tried a CTA scan of her lungs at first; but the techs were unable to find a workable vein for a large-volume IV to inject contrast solution. We're waiting for the results and hoping to rule out a sneaky clot.

The fact that she's been more non-functional when she's tired over the past week has me wary about the return of infection, brain swelling, hydrocephalus, or whatever. We never know, unless the symptoms persist and worsen. On the other hand, we could be seeing the effects of her stepping down from 4mg to 3mg of the steroid Decadron on Tuesday. Even her breathing trouble may be due to fatigue. Whatever the case, Susan's condition involves an ever-changing set of circumstances. Overall, she continues to make gradual progress - for this we are grateful.

Improvement and good news

The past several days have afforded a few more work hours for me, a good sign that accompanies Susan’s gradual improvement. Last Tuesday and Wednesday we made a couple of trips to UCLA for three specialist appointments following her hospitalization a month ago. First, neurosurgeon Linda Liau discussed Susan’s recent MRI, confirming the blood clot in her brain has absorbed a little and the tumor remains stable – double good news. She said if Susan had not been improving or if she worsened, she would need surgery to evacuate the bleed. With Susan making advances from week to week, it’s clear she will not need another operation right now. We are grateful. Dr Liau will evaluate Susan’s future scans to follow up.

Next, neuro-oncologist Leia Nghiemphu said Susan has made remarkable progress and was pleased to see her alert, responsive, and walking. We talked through different next-step treatment options and decided that since she’d had a complete six-month course of Avastin and CPT-11 without tumor progression before her hemorrhage occurred, Susan could have a break from chemo for now. Had the bleed started early on, it would have been urgent to begin a replacement therapy since glioblastoma can grow so aggressively. But with twelve doses of Avastin on board plus tumor stability, Dr Leia feels comfortable doing monthly MRIs and watching for changes. This will allow Susan to recover from her bleed more fully and wean herself off steroids again. We were greatly encouraged by these two good-news visits. Before heading to Junior’s Deli for lunch, we ambled through the treatment center to visit the staff who’d been injecting Susan’s chemo drugs every two weeks since June and who last saw her under the daze of her hemorrhage. Nurse Nikki was thrilled to see Susan and witness her progress.

On Wednesday, we headed back to the 200 Building to see infectious disease physician Daniel Uslan. He and I voiced our relief that Susan’s hospitalization had not been due to infection relapse after we had stopped her anti-fungal med in early January. He’d agreed to my request to stop Fluconazole, so her infection-like symptoms several weeks later had us both second-guessing that decision. Now we know the hemorrhage was the culprit, and her blood and spinal fluid are clear of infection. Even so, he recommended keeping her on low-dose Fluconazole indefinitely since fungal meningitis is so troublesome and she seems to be tolerating the drug without side effects. We did manage to cut out another drug, though – she’ll have her last dose of the antibiotic Bactrim when she tapers off her steroids. Woo-hoo! Less pills! Less pills! (We get excited about these things.)

Meanwhile, Susan has begun her physical, occupational and speech therapy work with a new team from Hygieia Home Health. Their treatment is less intensive with fewer visits than her prior team, so it will require more initiative from her, her caregiver, and me to keep her exercises going. Otherwise, her playfulness is loads of fun and offers perhaps the most powerful sign of her commitment to get well. Susan has taken to repeating a “La-La-La” song we heard from a 90+ year-old patient named Matilda last summer at the rehab hospital. Matilda had a beautiful soprano voice, and would scoot around the hallways (or sometimes into a patient’s room) in her wheelchair singing her high, graceful “La-La-La” tune punctuated by a low-toned, quicker “La-La-La” rhythm. It was something to behold. Our first encounter was bizarre. Matilda, whose language was Czech or Russian laced with dementia, had wheeled herself into Susan's room during a family visit in a fruitless attempt to escape the ward from the sliding door near Susan’s bed. She kept “La-La-La”-ing while bumping into Susan’s bed and had Austin trapped between the bed and the sliding door. We let her carry on as we resumed our visit and tried not to disturb Matilda’s world. Austin thumbed something on his cell phone and held it up to us. The screen read “911” and gave us a good laugh. Over the summer, the kids and I would imitate Matilda frequently. Now Susan enjoys singing my very own arrangement of Matilda’s serenade, and does so to everyone’s great delight – especially her own. She’s even branched off into other songs and is fond of a “La-La-La” rendition of “The Chicken Dance” that’s a real corker. Susan is sassy with style.

MRI looks stable

Susan had her scheduled MRI on Tuesday, about 2½ weeks following her last one as an inpatient at UCLA. We’ll know more details when we meet with the neurosurgeon next week; but her neuro-oncologist saw the scan and said it looks stable with no apparent tumor growth. We are thanking God for this good news.

We’re winding down therapy visits with Rehab Without Walls this week and preparing for physical therapy visits from a home health agency beginning next week. We had Susan’s evaluation/discharge conference call with the rehab team today and confirmed the therapists’ opinions that Susan’s lower function since the onset of the bleed puts their aggressive therapy out of reach for now. She benefitted from their care since December and will hopefully be able to have their help in the future.

I had a profound spiritual dream last night, the first I’ve had in quite a while. In it, Susan and I had a sustained series of conflicts with evil characters in a house of horrors type of setting. We had several encounters as we made entry to their realm at various levels and fought with monsters that were cartoonish, yet formidable. When I was in my 20s, I had my first dream of spiritual battle and woke up exhilarated after pounding a demon into oblivion. I was acutely aware that God’s power won the victory and not my own. While I had some satisfaction in knowing I had overcome my flight-or-fight paralysis when the fiend confronted me, I had an even greater fulfillment in witnessing the power of God smash the enemy. God is awesome; and demons who oppose Him don’t stand a chance – it’s not even close. Like Graham Cooke said, “One believer with God is always in the majority.”

Last night’s fitful dream had the same elements of confrontation and overcoming, except with a stronger sense of confidence in God’s power to prevail in spite of the ugly and unpleasant environment. There were lots of them; but somehow I knew we had faced worse before and had triumphed. We were going to be ok. And not only were Sue and I doing battle together (and she in her normal, pre-cancer self), we were the aggressors, entering their realm at various levels in a hillside to defeat them. We also were aware the demons we encountered were sort of impish, not the higher-command types we knew were located elsewhere. At one point when I woke up, I felt God speaking into my spirit to fight, to fight and to not stop fighting, to take the enemy’s territory and not give up any of our own, and to not give the enemy a foothold by sinning. I got the message.

Needless to say, I had a bit to ponder today. Was my dream a picture of Susan’s cancer battle revealed in other terms? Is Susan’s cancer battle just one aspect of a greater war? Putting such questions aside, the dream brings Susan’s cancer journey to light amidst the backdrop of a great unseen battle that is fought on one level by people who pray and wrestle in their spirits with deep things, and fought on another level by spiritual forces of good and evil who clash invisibly to us. God’s Word is vital in helping us understand the context and what’s at stake:

• Jesus says in John 10:10 “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”
• Paul says in Ephesians 6:12, “For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”
• With ancient smack-talk, David says to the huge Philistine in 1 Samuel 17:47, “All those gathered here will know that it is not by sword or spear that the LORD saves; for the battle is the LORD's, and he will give all of you into our hands."

Truths like these are enlightening for believers. They’re encouraging to me when I consider our situation, the assault against our family, our relationship in the Body of Christ, and the life-and-death battle we’re fighting. For now, I consider last night’s dream another aspect of the mystery of our journey. There is so much we don’t know, and so much we cannot control. I believe hidden things will be revealed as we go along. Ultimately, perhaps we’ll receive a full understanding of our part in God’s great scheme when we get to Heaven – but maybe we’ll be so engrossed with the Lord it won’t even matter.

On the note of mystery, I remember Susan’s impressions as she prayed in late 2005 or early 2006 for our church’s ministry to the City of Compton. She felt a heavy threat in her spirit, that the enemy would not easily give up the stronghold of a city he’d held in brokenness for so long. I remember praying also for Compton about that time among church leaders when I had the sense of looking into a deep darkness, not just the dark; darkness with dimensions of depth and space, void of all light. It was darkness with substance, cold and heavy and threatening. Looking back now, and after last night’s dream, were these impressions for Susan and me, relating somehow to her yet-to-be-discovered breast and brain cancers? Or do they bear a larger context for our church or others who get a push-back from an evil one whose days are numbered?

• Peter writes to us in 1 Peter 4:12-13, “Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.”

For the Christian, there’s often something greater behind an experience, event, or encounter. A scary dream isn’t a nightmare – it’s spiritual warfare, or at least basic training. A life-threatening disease isn’t a death sentence – it’s a life-encounter with the Living God. Death isn’t a horrifying threat – it’s cab fare to our ultimate existence in the presence of God. All of it is a matter of mystery, the concealment of God’s good purposes – and a matter for prayer.

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.