Finally a lift

This was a significant week for Susan in several ways as she met with an orthopedist regarding her back injury, had another brain MRI and oncology visit at UCLA, and got a lift in her cognitive level. We met on Monday with Dr Sarbpaul Bhalla in Long Beach, a veteran orthopedist who evaluated Susan’s July spinal images from UCLA and ordered a new thoracic-lumbar MRI for next week. He’ll determine whether she’s a candidate for kyphoplasty, a non-invasive surgery for compression fractures where the cavity of the vertebra is filled with a small balloon followed by bone cement to restore its normal height and shape. The procedure is useful for its immediate restoration that relieves pain, has few side effects, and is fairly simple to do.
We had a full day at UCLA on Wednesday with good news about Susan’s brain tumor – the MRI showed no change compared to July. This week's scan was important since the June/July comparison still involved the transition to Susan’s new CPT-11/Avastin treatment and lacked a good starting point or baseline. We are very grateful for tumor stability and lack of growth. We enjoyed our meeting with Dr Timothy Cloughesy, who directs the neuro-oncology program at UCLA and is covering Dr Nghiemphu’s patients while she’s on maternity leave. With the good report on tumor, we focused on Susan’s complications and the additional good news of improvement with red and white blood cells (anemia and infection). Also her spinal fluid was clear following last week’s lumbar puncture (no meningitis); and her proteinuria improved so she could receive Avastin again. Since Susan tested positive this week for blood clots (DVT) in both legs, Dr Cloughesy prescribed a blood thinner called lovenox. And with evidence of osteoporosis brought on by chemotherapy, he prescribed a bone strengthener called fosomax.
Starting Wednesday, I also noticed some of the fog clouding Susan’s mind start to lift. It’s hard to say whether it’s due to relief from infection, last week’s spinal tap, or recovery from her last chemo, but she was thankfully more alert, more talkative, and more aware of her situation and surroundings. I completely enjoyed having more fluid conversations with her than we’ve had for a while, especially since last week she asked me whether her parents and her fiancé knew what was going on with her. That comment brought one of those moments of gentle correction and acknowledgment that there’s a reason she’s confused – and it’s ok.

Susan’s funnies keep coming. When I opened her car door after arriving at UCLA, she said to me with feigned surprise, “Oh, who are you?” I said, “I’m fine.” (This is a game we’ve played for years.) Then I told her I resolve to respond with “I’m fine” every time she asks me who I am, and to respond with “I’m your husband” every time she asks me how I am. She looked at me straight-faced and said, “And I resolve to hit you every time you do that.” Later in the hallway, we encountered our pal Carla who helps schedule Susan’s appointments. We must have been on her list or something, because she saw us as she busily walked by and said, “Hey, you’re my next people.” I said excitedly to Sue, “Hey, honey, we’re her next people!” Susan replied out of the blue, “That’s good, as long as she saves us some of her candy.” For Susan, thoughts of candy produce excitement, and excitement produces thoughts of candy.

Complications persist

This has been a tough couple of weeks for Susan. A nurse at Broadway by the Sea called late Friday to inform me the blood cultures taken earlier in the week had come back positive for e coli – the infection had spread from her urinary tract to her bloodstream. They were starting her with an antibiotic called recophin to be given IV for ten days. A quick call to Dr Nghiemphu clarified that a blood infection can be serious; but it’s encouraging that they caught it early. She feels the recophin will do the job.
I took Susan for follow-up to UCLA yesterday to visit Dr Uslan with the infectious disease team, who said urinary tract infections involving e coli can be an issue for patients dealing with incontinence and they can sometimes travel to the kidneys and infect the blood. He examined her port catheter also since infections can also result from IVs; but the catheter site looks ok and is contained under the skin. He confirmed recophin as the treatment of choice, took another blood sample, and ordered a follow-up blood test for several weeks from now to check her status.

We finally got Susan scheduled for her lumbar puncture (spinal tap), so we were back at UCLA this morning for the procedure. We checked in to the radiology unit at the Ronald Reagan Medical Center so the neurosurgeon could use their fluoroscopy (video x-ray) equipment. The procedure went smoothly – the surgeon collected about 25ccs of fluid. That alone should help the hydrocephalus for now, while the fluid will be checked for infection. Susan was in a lot of pain since all the bed-wheelchair-car transfers aggravated her back injury. She said everything hurt, so I couldn’t tell what was back pain or spinal tap pain or what. I stopped by the oncology clinic to get Susan some vicodin before we headed back to Long Beach. Nurse Nikki was alarmed that Susan wasn’t kept lying down – standard protocol is to lie flat on your back after a spinal tap to prevent any leakage. (What do I know?) Dear Nikki found Susan a bed in the clinic so she could rest a few hours and gave her some pain meds. Such great staff have made the Jonsson Cancer Center clinic a refuge at UCLA when Susan needs help. We’ll be back next week for MRI, doctor visit, and chemo, and we continue to pray for her healing in all respects.

Susan keeps the physical therapy staff at Broadway by the Sea laughing. One day last week as she was ready to walk while holding parallel bars, John prompted Susan to step towards him. She didn’t respond right away, which is not unusual since she sometimes has trouble initiating an action. He prompted her again, but she still didn’t react. When he encouraged her a third time and she just stood there, he became concerned she might be having pain or something. He asked, “Susan, is something wrong?” She gave a droll reply, “Well, I do have this illness...”

Dogged by complications

Susan’s progress at rehab has been hampered by a return of all-too familiar symptoms – headache, fever, confusion and fatigue. She complained of a headache on Saturday for the first time in weeks, followed by a low-grade fever Saturday night and a more substantial 101°F on Sunday morning. These are signals that something’s wrong; but we don’t know exactly what. The problem all along has been these symptoms can have a variety of causes. Following two visits to UCLA this week for testing and chemo, we know of several issues. Her urinary tract infection has emerged again and will require more antibiotics. She has anemia, a low red blood cell count caused by chemo that causes great exhaustion and was treated yesterday with a blood-building medication. Also, she’s developed proteinuria, excessive protein in her system that affects kidney function and prevented her from receiving Avastin yesterday. And hydrocephalus still lurks and may be clouding the picture also – the staff at UCLA are trying to arrange an outpatient spinal tap instead of admitting her to the hospital for the procedure.
Meanwhile, Susan’s spirits continue to be good. Her positive outlook, gracious nature, and cooperative approach make an impression on her caregivers. I’m constantly amazed at her mental and spiritual strength in spite of her physical and cognitive weakness. Her champion attitude has been a tremendous help for her and those who help her. I’m grateful for and proud of my wife.

Being aware of God’s presence in our situation this past year with Susan’s brain cancer and just last week with Sharon Mott’s passing, I have pondered a powerful idea about God’s purposes in our seasons of suffering. How can He be the Comforter if we have no need of comfort? How can he show Himself to be our Healer if we have no need of healing? How can He become our Savior unless we know we need saving? These questions come with tears. There is a great mystery wrapped up in the nature of God (who is good) and the plight of man (who is proud and doesn’t always know he needs God). A miracle is nothing more than the intersection of God’s glorious provision at the point of our need.

Remembering Sharon Mott

Our sister Sharon Mott passed away unexpectedly on July 27 from an apparent heart attack. She was my sister. (You can tell from the picture that we’re related.) We celebrated her home-going on Friday in a packed Emmanuel sanctuary with an extraordinary outpouring of grief and tears, laughing and thankfulness. We continue to uphold Patricia, Deborah, Clinton Jr, Clinton Sr, and the Mott family in prayer for peace and strength. Sharon’s passing at age 45 is another stunning reminder of the brevity of life and of the need to be mindful that God could call each of us away at any moment.
About a dozen of Sharon’s family and friends shared thoughtful and honest comments about who she was and how she affected us. People spoke from diverse perspectives like the churches she attended over the years, the Vons store where she worked, and the apartment where she lived. What emerged was a portrait of an ordinary, “just like us” person who was uniquely special, who was extraordinarily talented, and who loved the Lord. Her fellow Inspirational Choir members from Emmanuel will miss her deeply – her joy, her confident presence, her wit, her silly accents, her encouragement, and her amazing voice.
As I was privileged to share some comments as a fellow choir member, I reflected on the nature of suffering, and how in the face of untimely tragedies it’s natural to ask, “Why?” I believe we’re universally hard-wired to desire and expect a satisfying life. When tragedy interrupts, something inside of us knows it’s not right. We want to know why. Even Jesus, at the height of his human suffering on the cross, cried out, “My God, my God, why have you forsaken me?” Of course, we know the despair of the question will not be comforted with an answer, at least not in this life.
The root of our desire for a satisfying life comes out of the perfect way God created us, eternal beings in perfect fellowship with our Father and Creator. When Satan tempted Adam and Eve, they used our gift of free will to choose sin, ushering in our age-old war with sin, death and hell. The amazing thing about God is His remedy for us – it’s not religion or good deeds or human potential. His remedy is Him. We’ll probably never realize the distance Jesus traveled from the throne of heaven to the soil of earth; but God sent His own Son to forever fix our problem of sin, death and hell. Since asking “Why?” leaves us empty, I suggest a better question to ask is “How?”
Lord, how could you love us so much? A lesser god would have hit “reset” and cancelled the human experiment. You could have done that. For some reason You love us so much you paid an immeasurable price with the life of your Son, knowing we could never fully understand or appreciate it. Rather than "why?”, I think "how could you love us so much?” will be a much more satisfying pursuit.

Walking again

During therapy yesterday Susan walked for the first time in about two months, using a walker to amble out of the therapy room, across the lobby and back. Her parents were there to share the joy. We're thankful she’s been making great progress physically and has continued to become more aware and alert. One of her therapists noted how much she’s been talking and described her speech as “word salad,” which is fitting since she easily combines images from her sensory menu into an idea she’s trying to express. She’ll probably benefit from some more speech therapy to help her thoughts become more grounded; but at least she’s talking and interacting.

The other afternoon Austin asked his mom if she was having a good day. Ever the sarcastic quipster, she said, “Oh yes, this morning I looked at the calendar and jumped for joy.”