Easy trip from pre-op to post-op

After deciding Susan would not have the Inter-stim bladder pacemaker implanted for good, there was still the matter of the electrodes placed in August in her low back – foreign objects now with no useful purpose. The outpatient procedure on Wednesday at UCLA to have them removed went smoothly and made us grateful to put the issue behind us. After checking in at 7:30am, Susan got to pre-op about 8:00, went into surgery at 8:30, and was in recovery in less than an hour. By the time I saw her a bit before 10:00, she was able to wake up and start shaking off the anesthesia. I was impressed with her chipper mood and the quick progress she made without complications or much pain. We left by 11:00, had a bite to eat, and zipped home. She was a bit tired that afternoon, but only slightly more than normal, and has been feeling well since.

This procedure going smoothly is more evidence of how well Susan is doing these days. She has frequent episodes of headache and fatigue and needs several hours of rest, but she usually revives later or by the next morning. She’s stable. There’s been no great improvement, but no nasty complications either for a number of months. We’re thankful. We sense God’s hand holding and guiding us, and we’re aware of the continual prayers people lift up on our behalf. God is keeping us – and we’re doing well.

When I was filling out Susan’s pre-op forms and came to the section about religious and other preferences, there was a question about preferred communication style. I recall the choices were “verbal,” “written,” “demonstrated,” and “other.” I overcame my brief urge to check “other” and write in “puppet show.” But I love the thought of it.

Later, when we went to the Plaza Deli for our meal, Susan’s turkey sandwich order came up before my chicken Caesar salad. During several minutes of waiting, I gathered up utensils, napkins, and drink refills. Susan wondered where my Caesar salad was. I said, “They’re looking for an emperor, but they’re awfully hard to find these days. They keep getting murdered. It’s the senators – and the hemlock.”

What brain tumor?

I called home from the office this morning to check with Susan and see if she was feeling better. She’d had a few symptoms return after a weeks-long absence and was feeling tired and discouraged when I left the house. By mid-morning, she’d slept some more and was feeling well. When I called, we had one of those fluid, lucid conversations that are becoming more commonplace and lead me to wonder, “What brain tumor?” Susan is clearly in the best shape she’s been since last year at this time when hydrocephalus set in and set off a season of infections, fractures, illness, and hemorrhage. Her improvement over the past 3-4 months has been remarkable – and most welcome, since it’s ushered in a level of normalcy to our household that we’d missed for a long time. This morning’s episode reminded both of us how little she’s been ill recently and alerted me that complications could interrupt our lives again at any time. We remain, as ever, squarely in the Lord’s hands and thankful for Susan’s healing, strength, and restoration.

We had a conversation at church recently with some friends who have been faithful in support and prayer for Susan. A typical 5-10 minute chat involves the weather, the movie you saw, the team you like or what the kids are doing, so it’s not ordinary for a person to speak of death and dying in the span of a casual conversation. But when Kristen shared that she’s been encouraged by Susan’s faith, Susan responded honestly in what’s become a normal (but not too frequent) acceptance of our situation. She said something like she couldn’t have expected all that’s happened, but she’s ready to go home to the Lord whenever he’s ready for her. She believes God has a purpose and work for what remains of her life on earth, but when it’s time to go to heaven, it will be far better than being here.

Her comments demonstrated Susan’s peace with her circumstances, her trust in whatever the Lord’s plans are for her and the glorious confidence she has in her future. I couldn’t help but note the odd contrast of her words considering how well she’s doing, but I also cannot imagine a greater gift than God’s perfect love that casts out all fear (1 John 4:18). It’s just like our good and sovereign Lord to solve a problem for us that way – if he doesn’t remove the circumstance that’s giving us trouble, he’ll take away its ability to trouble us.

Paul writes, “Where O death, is your victory? Where O death, is your sting?” The passage he quotes in 1 Cor 15:55 is from Hosea 13:14,

“I will ransom them from the power of the grave; I will redeem them from death.
Where, O death, are your plagues? Where, O grave, is your destruction?”

Put another way, the Inez Andrews gospel song says, “Lord, you don’t have to move my mountain, but give me the strength to climb.” I just love that Susan is living it.

Coming home

Susan continues her improvement and will be discharged from the rehab hospital next week, returning home for the first time in over three months. We’re very grateful and a little apprehensive. Susan will return in much better condition than in July, when weakness intensified by hydrocephalus, infection, and steroid-induced muscle loss made her unable to walk and required 100% help with everything. Since I haven’t been with her recently for more than 5-8 hours at a time, I’ll soon learn just how much she’s improved. I’m arranging for care at home to be provided by several sources, including a part-time paid caregiver. Susan still needs 24-hour supervision and help to stand, transfer, walk, and do other basic activities. She may be able to handle the multi-disciplinary therapies with Rehab Without Walls like she had a year ago, but not until she’s able to handle three hours at a time. Their evaluation on Thursday didn’t go well since she’d been up all day, had a full therapy session, and needed to sleep.

Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.

I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”

This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.

“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.

“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.

The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).

This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?

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...”

A fall and a fracture

Following Wednesday’s chemotherapy treatment at UCLA, Susan took a hard fall in the bathroom at the oncology clinic. I had lifted her from her wheelchair and had her standing steadily while holding the grab bar when I turned a few steps away to throw something in the trash. I saw movement out of the corner of my eye and turned to see her falling backwards, landing hard on her bottom and knocking the back of her head on the wall just behind her. It was a moment of surreal, slow-motion helplessness for me and one of intense pain for her. She slumped to her right side and cried. The staff heard the impact from outside and came to help right away. While the nurses examined her, we thought it best to call paramedics out of concern for back or brain injury. The medics arrived within several minutes and did their best to move her onto a backboard and fit a neck brace without hurting her, but it was excruciating. Everything hurt.

She was transported around the block to the ER at Ronald Reagan UCLA Medical Center and admitted about 3pm for a CT scan and spinal x-rays. They gave her something really strong for pain that took away the “everything hurts” sensation and allowed Susan to rest a bit. Doctors said the CT scan showed no head trauma or bleeding and said the spinal x-rays were negative also, a great relief. When it became clear she couldn’t tolerate transferring or sitting for a car ride and that I might run into trouble attending her at home, she was admitted to the hospital around 2:30am for observation and pain management.

We learned over the next two days that Susan does have a compression fracture on L-1, her first lumbar vertebra. The orthopedic surgeon said it’s not severe (could have been worse); and ordered a spinal CT scan to check for bone fragments (there are none). She’ll need to wear a brace to restrict her movements when she’s not lying down. She also had a second spinal tap on Friday to drain fluid for hydrocephalus since she was going to need another one soon anyway, and began antibiotic treatment for a raging bladder infection we discovered prior to Wednesday’s chemotherapy. Too much fun for one girl.

After evaluating her condition with the medical team and physical therapists, we decided Susan needs to have rehabilitation in a skilled nursing facility before coming home. That’s a new area for me in decision-making, so our nurse-friend Brenda Carruth came through with some excellent referrals from the discharge planner at Long Beach Memorial. I checked them out on Saturday chose Alamitos Belmont Rehabilitation Hospital in Long Beach. Susan will be transferred there Monday for what may be a stay of several weeks to a month or more depending on her progress. They seem very focused on rehab, so I think it will be a good environment for her to heal and get stronger. Susan may lower average patient age by about 20 years when she arrives. They play bingo there.

When the medics were attending Susan in the bathroom on Wednesday, our oncology nurse Nikki told me pointedly her fall was not my fault. Her words lifted a burden from me. I thanked her. I had not caused her to fall, but I had not prevented it either. It happened so fast – and she fell hard, almost like someone pushed her. It was one of those “if only” moments you wish you could take back and do differently. Since Nikki is both observant and caring, she saw whatever expression I had on my face and took the burden from me. I decided to agree with her since beating myself up with guilt isn’t going to help anything. Susan has had a complicated illness, so we just have to deal with it. Once again, we have felt the vast support of our family, friends and church over these past days. We know God hears every prayer and will continue to meet every need. We always thank Him for his goodness and mercy.

MRI, hydrocephalus, Avastin

Yesterday’s UCLA visit brought some much-needed good news. Susan’s MRI revealed enlarged ventricles that indicate the build-up of fluid in her brain – hydrocephalus. While that’s not good news alone, it might mean adjusting the shunt that was implanted last fall for the same condition could bring relief from Susan’s terribly weakened state. The last adjustment brought quick and dramatic improvement and months of relief. But tumor progression apparently can change conditions in the brain and cause a return of hydrocephalus in some cases. I am waiting eagerly for the consensus at tomorrow’s brain tumor board meeting when Dr. Nghiemphu will present Susan’s scans and her opinion to the other neuro-oncologists and neurosurgeons. Perhaps Dr. Bergsneider who implanted the shunt can make the adjustment soon.

Yesterday’s MRI also showed a big decrease in brain swelling, more good news. It looks like two treatments of Avastin have been effective. But there’s no definite reading on tumor growth right now since they’ll need to see a series of scans without swelling for a meaningful comparison. At least we know there are no new tumor sites. Susan had another Avastin infusion yesterday, but skipped the CPT-11 chemotherapy this time since its side-effects may be complicating her symptoms. She’s still extremely weak, tired, and mentally slow, needing full-time custodial care. We’ll have a wheelchair delivered tomorrow to help with mobility and hope we won’t need it for long. With so much muscle loss from steroids, she’ll need to work a while to get her strength back. Meanwhile, we’re doing a fast decadron taper to 6mg from 8mg this week and to 4mg next week. Susan’s whole ordeal recently has been puzzling since there can be several possible causes for her weakness – tumor growth, decadron, chemo, or now hydrocephalus. We hope for some action and relief, and soon.

I’m coming to know the challenges of dealing with acute long-term care needs. They’re emotional – there’s the pain of seeing your loved one in a compromised state. The challenges are physical – lifting, transferring, bathing, dressing, and doing them over and over again. It’s a grind. The challenges are psychological – the routine pressures of daily life do not stop just because your helpless loved one needs what they need when they need it. The pace of both worlds is hard to reconcile and the contrast is enormous. The challenges are spiritual – waiting on the Lord can seem to be endless when your circumstances intensify. I identify with the Psalmist who cries out, “How long, O Lord? Will you forget me forever? How long will you hide your face from me?” But somehow, God meets our needs everyday with peace for emotional pain, rest for a weary body, strength for a troubled mind, and His presence when hope has yet to be realized. This is so hard – and God is so good.

A disappointing setback

The MRI today did not bring good news. The scan showed significant brain swelling in the left frontal cavity where Susan’s tumor was removed that has pushed the left hemisphere across the midline. That explains why she’s been struggling so much. Dr. Nghiemphu showed us the views done with IV contrast where there’s a lot of contrasted area in the cavity on the left and the “remaining” tumor site on the right, explaining it’s probably tumor resurgence. She said the amount of change over the past six weeks is cause for concern.
While we could push to get Susan on a clinical trial like the brain cancer vaccine/immunotherapy at this time, the doctor would like to see her begin treatment with a chemotherapy called CPT-11 plus a biological agent called Avastin. Avastin was developed for colorectal cancer and has been found to cut off the blood supply to brain tumors. It’s been approved in the USA and is still in late clinical trials elsewhere. The CPT-11/Avastin combination is now the most common 2nd line of treatment for brain tumor recurrence and is the same one our friend Jeff Nord is having now. Since it’s an intravenous program, she'll have infusions every two weeks at UCLA beginning in a couple of weeks once it’s approved by our insurance company. We're hopeful the Avastin will do its thing to cut off the blood flow to her tumor and we’re hoping to see relief of symptoms in the next few days as she goes back on the anti-swelling steroids for now.

We've had the blessing of stable improvement for five months, so this turn is discouraging. This change is hard because it seemed like Susan’s stability might continue indefinitely. Today we were reminded how aggressive this type of cancer is. But God's presence is life-giving, His faithfulness protects us, and His gift of hope sustains us always. Just today, our bad news was tempered with two generous and anonymous gifts (one by mail, one by the church offering plate), some gift cards for dinner, and an offer from the drug company to pay for Susan’s Avastin if our insurance company won’t. We're so grateful for our church family and for the kindness of caring people. We are holding to God's unchanging hand.

Yet another hospitalization

Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.

Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.

Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.

We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.

Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.

Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.

Radiation therapy, lots of help at home

Fri 09/06/07
A dear friend from church arranged for Susan to have an alternative medicine treatment with a "quantum biofeedback" system. A type of electromagnetic therapy, the device uses electrodes and 32-gigabyte computer program to analyze a person's physical and emotional condition, identify blockages and imbalances, correct them, and allow the body to heal itself. It's hard for me to summarize the what and the how of energy medicine, but it's another resource we're exploring to help Susan's body fend off cancer and the effects other therapies.

Thu 09/07/07
Susan's condition continues to improve with a high-dose, oral anti-fungal drug called fluconasole (diflucan) that she'll be on until Oct 1. Her temodar chemotherapy will be delayed until about that time to allow the infection to heal. We'll watch her symptoms for any relapse and have blood tests to guard against adverse side effects with her liver.
Susan was attended by friends of ours from church who came by in 3 to 4 hour morning and afternoon shifts to provide care for her while Lexie worked and the boys had their first day of school. I actually went to work for several hours; and Sue's parents took her to radiation. This was the first day of our new fall routine.

Sun 09/09/07
Susan continues to improve with rest and medications. We had some family time with my brother Jon on Saturday and mom, grandmother, and sister Becky on Sunday. We also attended church together for the first time in about a month, enjoying the worship, the Word, and the fellowship.

Mon 09/10/07
We revisited our new fall schedule with Lexie at CSULB, the boys in school, and me at work. Our sister-in-law Dorothy has arranged for morning and afternoon care Mon-Fri with 10-15 ladies from our church. I'm thankful! I set up instructions for her care with physical therapy exercises and other activities during the day, including a pain med log for continuity. We're blessed to have such caring friends who are available to help.
I took Susan to her radiation therapy and our first weekly consultation with her radiation oncologists. We each answered each other's questions – I'm grateful to have these caring specialists on our team.
We dropped by our Pavilions grocery pharmacy to have a prescription refilled and were overwhelmed by the love expressed to us by our pharmacist and his assistant. Ray, the pharmacist, offered us his prayers along with his "whatever I can do" attitude. Sylvia, the tech who also has been a dental hygiene patient of Susan's, gave her a beautiful Enesco angel figurine. People everywhere are amazing.

As we make the transition from summer to fall, I'm grateful for the timing of Susan's illness having begun in early summer when schedules were lighter and more unstructured. I guess if there were ever a good time to get used to having your life turned on end, summer would be it. In contrast, the fall season brings the weight of increased family activities, and the realization that we've quickly gone from Sue and me running our household while supporting three people to me running our household while supporting four. Time whizzes by (I left this website untouched for a week), priorities are numerous, and sleep is precious. It's all pretty heavy. I'm glad we have a lot of help.

Susan and I are continually and increasingly thankful to have each other. She relies on me more than ever, she understands the pressure I must be feeling, and is forever gracious and grateful. I find myself wanting nothing more than to be next to her since the days are uncertain. I am thankful to have her by my side in spite of her limitations – we still confide in and console each other – I still have my wife. We recognize the blessing of being able to communicate as we always have.

We recently read another amazing installment in Streams in the Desert that affected us deeply:

"There is a divine mystery in suffering, one that has a strange and supernatural power and has never been completely understood by human reason. No
one has ever developed a deep level of spirituality or holiness without
experiencing a great deal of suffering. When a person who suffers reaches a
point where he can be calm and carefree, inwardly smiling at his own suffering
and no longer asking God to be delivered from it, then he has accomplished its
blessed ministry, perseverance has 'finish[ed] its work' (James 1:4), and the
pain of the Crucifixion has begun to weave itself into a crown."

Lord, have mercy. I believe – help me also to obey.

Hard news, and a healing

Thu 07/26/07
I received the Mayo Clinic pathology report faxed to my office – not good news. Susan's tumor is a malignant, grade IV glioblastoma, not the milder grade III oligodendroglioma. The tissue has unusual characteristics more commonly seen with the milder tumor, so it looks like oligodendroglioma. Dr Scheithauer at Mayo is the global expert in brain tumor pathology, so kudos to the LB Memorial staff for getting his opinion. I confirmed the report was sent to UCLA and I forwarded it to LBMMC Neurosurgeon Barry Ceverha also.
I spoke with Dr Nghiemphu, who recommends surgery within two weeks followed by simultaneous radiation and chemotherapy for this more rare and deadly tumor. Experimental clinical trials are usually available for Glioblastoma patients; but not for Susan since she had breast cancer last year – she would need to be cancer free for 3 years. We'll consult with Drs Liau (UCLA) and Ceverha (LBMMC) to decide who will operate.
To me, this is the perfect setup for God to do something miraculous. I believe in Him and His power. Lord, have mercy.
We had a 1pm appointment in Long Beach for Susan's abdominal CT scan. The nurse had difficulty getting a good vein for the contrast solution; but the scan finished quickly.

I truly was rattled by the Mayo Clinic pathology report that revealed Susan's tumor is a grade IV glioblastoma instead of the lesser oligodendroglioma. Several weeks ago, a doctor told me glioblastoma is a death sentence. Mind you, he's one of many gifted and experienced physicians who work in clinical practice focused on known conditions, standard treatments, and probable outcomes. They know more about specific areas of God's creation than I ever will, yet God seems so far removed from their clinical realm. I've had several times where fear or despair have come over me, and I've pushed them away. A time of worship on the 405 freeway brought my focus back to the Living God, God the Healer.
On our way to church for Oasis, I spoke with Susan about the Mayo report, she with her 10-12 inch incision on her scalp, her impaired vision, her vertigo, her muddled memory, and her numb right foot. We talked about the ominous report and uncertain outcome. She believes she will not die yet – that God has work and witnessing for her to do on this earth. And she is not afraid to die. We resolved again that we will not fear, we will not despair, and we will trust God for healing. We will wait on the Lord while we pursue every medical option available.
Oasis was amazing. The Holy Spirit was in charge. Bob & Chris Olson sang over the congregation, then Mitch VanderWal read scripture and we entered into prayers of praise together. I shared our perspective with those gathered, feeling awkward that as a leader of Oasis, so much attention was drawn to my wife while there were other cancer patients in the room who were more unnoticed. Oh well, this is where God has put us, on display. I shared Philippians 2:16-18 and Daniel 3:18. We had a time of deep, emotional worship, turning the focus from ourselves to God. Vicki shared how the Spirit led her to organize the prayer vigil. Ken spoke from the heart and prayed, followed by silent prayer, and more deep worship and prayer. As the night, concluded, Vicki was impressed to pray for healing of Susan's vision. A group of people rallied around with Melanie Gunsolus obediently ministering. When Sue opened her eyes, she was looking directly at Melanie, seeing beautiful eyes instead of just "shiny glass!" And she was seeing colors, not just shades of grey! Thank you, Lord!
Melanie was confident Sue would receive healing when the Holy Spirit came upon her and she felt a "transfer" go from her to Susan, similar to what she's experienced in the past with other healing. Pastor Ken watched our niece Alyssa's face as Susan was healed and described the happiest expression he's ever seen – a mixture of joy, wonder, and amazement. It was holy ground as faith became sight. Thank you, Lord!

Regaining awareness

Wed 07/11/07
Susan still unable to remember she had surgery or why, but now remembers she's at LBMMC.
We had a family meeting with Dr. Ceverha, who said lab results of tissue from surgery are likely a high-grade oligodendroglioma, a stage 3 tumor that is responsive to radiation and chemotherapy. The sample is being sent to the Mayo Clinic to confirm. We will meet with a neurosurgeon at Cedars-Sinai this week for his opinion.
Susan's memory is improving. She knows she's missing something, that there's activity going on that she's unaware of, and she knows it – but she can't connect things together. I encouraged her that these are normal feelings, that she's been through a lot; she's making progress and will continue to improve.
Visual impairment – unable to decipher items on bulletin board 12 feet away, unable to recognize large letters/numbers on a greeting card or identify colors of pink robe or blue bed pad.

Thu 07/12/07
We've been reading a devotional each night in Streams in the Desert, a gift from our dear friend Lisa Korver. Each one seems to be written just for us. The 7/12 theme is faith – the strongest trees are not found in the forested valleys under the protection of surrounding mountains. They're formed on the hilltops under the full force of wind and storms. In my one shot at life, I would rather be made strong in faith than stay comfortable and soft. Otherwise, why bother? God shows us His favor by giving us seasons of testing. Suffering is another precious gift that allows us to know Him as in no other way. I will never regret what has happened.

Fri 07/13/07
I was awakened at 3am for prayer and worship. Deep stuff. The term "purchase-living" came to me with Colossians 1:22-23, that we have been reconciled "by Christ's physical body through death to present you holy in his sight, without blemish and free from accusation — if you continue in your faith, established and firm, not moved from the hope held out in the gospel." The word "confidence" came with the image of the Lamb that was slain in Revelation 5, along with the image of the Passover lamb in Exodus 12:3 that required an act of faith for deliverance. A mystery: the work is done for us – with our involvement. I also compared "oligodendroglioma" vs "Jesus, name above all names." Like I said, 3am, deep stuff.
After a sobering meeting with a neurosurgeon at Cedars-Sinai, Randy Romberg, Vicki Gelberg and I wrestled with Susan's limited prognosis. Here is what I know:

• God is in all of this. It's on display; and many people are experiencing it with us. Something really good is coming.
• We are to speak words of life. I push back fear and despair when they approach.
• I resolve to stand with the three Hebrew men in Daniel 3 (above), trusting and believing God for Susan's healing amid the mystery of His sovereign will.

Sat 07/14/07
Susan continues neurological improvement, feeling more with it and acting more like Susan. Some facts are just not there, while other things come back amazingly. She was eating peas with dinner and finished my rhyme from long ago, "I eat my peas with honey, I've done it all my life; they do taste kind of funny, but it keeps them on my knife." Pretty cool.

A new awakening in ICU

Thu 07/05/07
Susan began a five-day stay in ICU. We celebrated some initial breakthroughs – she's speaking! She opened her eyes, she was alert, and she was able to have her breathing tube removed in the morning. I asked, "Do you have any pain?" (No). "They took that tumor out" (I have no idea what you're talking about).
We also discovered some initial setbacks – limited vision and impaired memory. Susan evidently had a stroke near the corneal artery (possibly with her seizure on the evening of July 3rd) that affects her right field of vision.

Fri 07/06/07
Even though on Day 2 after surgery Susan was making great physical progress, somehow death was near. With her memory deficit she did not know where she was, or why, and did not know the year or month. She could not remember our children or even that we had any. She expressed concern for me and what I must be suffering for her, which was encouraging.
Later, she said, "It's stubborn sometimes." (What is?) "Whatever needs to give up." (What needs to give up?) "The spirit or soul or whatever." Then she asked, "Who is asking me to give up my spirit?" (Who does it sound like?) "I don't know." (Ask Jesus to show you...Do you want to give up your spirit?) "I don't know..." (If you do, it's ok...) If it's her time to go to Heaven, I need to release her.
I had no idea what to expect next. A while later, when I described our kids to her, she prayed for them. She asked God would allow her to know them and who they are, to give them peace and to help them, to let them see her attributes, to give them wisdom and strength in all they do; to "bless and keep Mike and his family, to guard and protect them in the peace of Christ. Thank you for who they are and for what you will do in them." I wondered again if she was going to die soon.
In spite of her severely limited memory, not only is Susan "all there" spiritually, she's in a deeper place than before. Later she said, "Where's my scripture?" and was feeling around her bed. "Where did I put it?" (Just relax. I think it's hidden in your heart. What scripture are you looking for?) "The Lord is my Shepherd." We started saying Psalm 23 together. Then the woman who couldn't tell me the correct year recited the entire passage by herself. Wow.

Sat 07/07/07
Susan is still poorly oriented (doesn't know year, place, what happened; I reminded her about our children.) We read Mark 10:46-52 about Jesus healing a blind man named Bartamaeus. I prayed for removal of cancer, and restoration of memory and sight. Susan prayed, "Dear Jesus, thank you for your love and grace and thank you for your mercy. Thank you for your mercy. I ask you for your healing and mercy so I can be your witness of your love and grace, so I can be a witness for my children. Thank you for helping me and being with me. Amen."

Mon 07/09/07
Susan's attitude has been remarkable – thankful, upbeat, appreciative for everything.

Our sister-in-law Dorothy sat with Susan for several hours and visited. Susan talked about not having awareness of past or future, leaving her with what's most important – being here, now, with Dorothy. Pastor Harold Korver rejoiced to hear about it, because while most of us are weighed down by the past or worried about the future, Susan has the precious gift of "living in the now."