Tumor stable, clot still there

I was apprehensive about Susan’s MRI today. She’s been weighed down with confusion, weakness, fatigue, and other aspects of a neurological burden that had me prepared to discover her tumor had grown since last month’s scan. We are relieved and thankful her scan looked good today. Brain swelling is down in spite of lower doses of the steroid Decadron, the brain tumor has not grown, and the blood clot from January’s hemorrhage is still there. It’s the clot that’s chiefly causing her symptoms. It’s big, and it’s putting pressure on the top of her left frontal lobe. While much of the bleed is contained in the cavity where tumor was removed, a portion of it rests on top of brain tissue in an area that affects memory, speech, balance, and the initiation of tasks and movement. On the brighter side, the whole deal can make for some funny conversation. Tonight at dinner I noticed Susan’s empty bowl and said, “You finished all your fruit.” “Yep,” she said. “I ralphed ‘em down.” I’ve just always heard that word used when food moves the other way. Yesterday, Susan was still having a late nap when I got home from work. She actually was awake when I walked into our darkened room. I said, “What’s going on in here?” to brighten up the place. Who knows how long she had been quietly waiting. “I’m just lost in space,” she stated pleasantly. Some of her comments truly come from beyond the sun – and make me laugh.

Even though the bleed is a culprit that will be with her for a while since they normally take 3-6 months to absorb, we feel a weight lifted in knowing her tumor has not advanced. Statistically, it will be a matter of time for a grade IV GBM to grow again. That’s the reality. It’s just not yet – and that’s a relief. We are aware of God’s great and gracious hands leading, guiding and providing at every point of need we have. We have many right now. My prayers lately have moved from “God, give us strength” to “God, be our Strength.” Not just “God, give Susan healing” but “Be her Healer.” It's not so much wanting what He can do for us as it is wanting Him. I sense we’re more aware of Him in ordinary moments and wanting more of His presence. It’s a satisfying type of growth that prepares us for an eternity with Him. Yet knowing sin is “crouching at the door” and inevitably I will break fellowship with Him is also a reality. Perhaps I’ll remember to say not “Lord, give me grace” but “Lord, be my grace.”

More infection, persistent weakness

This is a rare Sunday morning when Susan and I stayed home from church. She has headache and abdominal pain and needs to rest. Days like this seem to come and go more frequently and interrupt Susan’s otherwise cheerful spirit and initiative. Her funk was more intense a week ago on Saturday when I became convinced infection had returned. I spoke to Dr Leia about Susan’s confusion, weakness, and pain (but no fever), so she prescribed another round of oral antibiotics and suggested we get some labs done in a few days. We still had some Cipromycin on hand from last time and were able to get her started without having a prescription filled. By Tuesday, Susan’s response was mixed – improved memory strength, and mental status, but with periodic slumps in each area. On Wednesday, Dr Leia ordered labs for blood and urine and extended the Cipro course to seven days. The lab results showed slight infection, a reasonable fact since five days of antibiotics knocked it down some. Right now we’re stumped about her persistent symptoms and realize there are several factors at work, as always, like the effects of her hemorrhage, infection, or possible tumor progression. We’ll know more about all of it this week when we go back to UCLA for more labs, an MRI, and a visit with Dr Leia.

Tomorrow will be our 24th wedding anniversary. We got married in 1985 between the winter and spring quarters during my first year after transferring to UCLA. I was sort of an oddball student since I commuted to campus from Bellflower, wasn’t involved in activities there, and was married by my 22nd birthday. After I had proposed to Susan in 1984 (at Tommy’s in LA so she wouldn’t expect it), we didn’t want to wait until summer of 1985 to get married, so UCLA’s calendar determined the date – Saturday, March 23, 1985. I rushed out of my last final exam on Friday to make it to our wedding rehearsal that evening. I think I got a “C” on that one and felt satisfied I had a good excuse in having my thoughts on bigger things.

As I said to Susan the other day, twenty-four years is almost a long time. Next year will be our Silver Wedding Anniversary, which is a year later than almost a long time. In late 2007, someone generously and anonymously gave us a gift certificate to stay at the Surf & Sand Hotel in Laguna Beach, a perfect thing to bank for a special occasion like our 25th. But since one of us has a malignant brain tumor, shouldn’t we use it now? You know, “carpe diem,” and all of that? We decided to wait and have something to look forward to. She’s made it this long.

The Word of God is so much my food for life. I need it for guidance, strength, counsel, and to slap me out of foolish thinking. During this season of Susan’s illness, we’ve had our lives emptied of things we thought were important and even indispensable. With life becoming more basic and undistracted, I realize how temporary we are, how small our efforts can be, how quickly we exhaust our strength, and how little we truly understand. This truth came alive recently as I read and rested in Isaiah 40, a passage that has great importance for me. In huge contrast to our lot, verse 28 says,

“Do you not know? Have you not heard? The Lord is the
everlasting God, creator of the ends of the earth. He will not grow tired or
weary, and his understanding no one can fathom.”

Wow. My life is but a breath on this planet – but he’s the everlasting God. I can produce nothing that will last, really – but He’s the creator of the ends of the earth. I’m often wiped out by 9pm – but he will not grow tired or weary. I don’t know what our cancer journey means, why it’s happening, or how it will turn out. But I am getting to know God better. His goodness is overwhelming, and His understanding no one can work out, think through, or comprehend.

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.