A new port catheter

Tonight's surgery went well. Susan went down to the OR shortly after 6pm for her procedures to implant a new port catheter and internalize her shunt, and returned to her room about 9:30.

I had a call from one of the vascular surgeons just after 7pm who said an ultrasound showed the veins near Susan’s neck on either side weren’t viable, so they’d need to implant the catheter in her thigh. The surgeon I had spoken with for consent said that might be necessary as a last resort.

I was sad after speaking with the surgeon in OR as I thought how awkward and difficult it will be to lower Susan’s pants every time someone needs to draw blood or infuse meds. I then became angry to think she’d had a perfectly good catheter in place before it was cut accidentally. Susan's been through so much.

I lifted it to the Lord and rested a while, waking up with a phone call from the vascular surgeon again. She said the procedure was done, Susan was doing well, and the neuro team was about to come in and internalize the shunt. She also said they went ahead and placed the new catheter near her neck on the left side – they’d discovered that thigh placement would be upstream of her IVC filter for blood clots. They found the upper vein on the left side of her neck to be just fine. What a relief. My prayer went from petition and waiting to thanks. God is good in attending to these details.

It’s been nearly a month since Susan’s hospital stays began. I wish she were strong enough to come home; but she’ll need time in acute rehab – hopefully now without being disrupted by any setbacks. We’re arranging to transfer her back to Long Beach tomorrow, so that’s one step closer to home. Thanks to everyone for praying tonight and to God for answering.

ICU day 8

Cleared to leave ICU today, Susan moved to the neuro floor this evening when a bed became available. She’s penciled in for surgery tomorrow as an add-on to a full calendar; and unless there’s a reasonably early opening, they’ll defer to Friday.

The neuro team decided to internalize her lower shunt line by sterilizing and tucking it away under her skin. It’s actually still blocked and not functioning, so this offers the least amount of disturbance. If she needs a new shunt in the future, they’ll remove the old one during that surgery. I also consented with the vascular surgery team to implant another power-port catheter. They expect a routine procedure.

Susan has been making great progress in recovery, so we’re hoping the trend continues when she gets to acute rehab. Depending on the timing of surgery and her status afterward, she could be transferred on the weekend, perhaps as soon as Friday.

It’s been wonderful to see how some of the ICU nurses who’ve attended to Susan over the past week like to come in and visit her. They’re enthralled with her joy, her smile, and her sweet nature. Tonight, Paolo told Susan she’s the sweetest lady ever, “no joke.” Earlier, Stella said how amazed and thrilled they are to have a GBM patient who’s nearly a six-year survivor and who’s making headway towards home. Too often, brain cancer patients come to ICU with advanced disease and poor outcomes. It must be satisfying to have patients with good results.

I wrote recently about fearing God for his power and enjoying him for his love. Today I read a devotional comparing the fear of the Lord to our natural fears. There’s a proper fear of the Lord in the sense of respect, like being afraid of offending your parents or another person you admire. We must learn to fear God; but the fear of the Lord is unavoidable the better we know him.

Of our many fears that don’t require much learning, perhaps our greatest is death. It makes sense. We were meant to live. The idea of “game over” is scary. But knowing God – and properly fearing him – means our fears have context. Just as everything we place under his dominion becomes rightly ordered, so does the realm of fear.

If God himself becomes our greatest fear, all others become lesser, even small. Even death. As odd as it sounds, the fear of the Lord becomes our ultimate comfort. Like a frightened child who runs into the arms of a strong and loving father, each of us can take refuge in the shadow of the Almighty, where he welcomes us.

I have small fears about Susan’s surgery tomorrow, about more complications, about her dying. We gave them tonight to the one we fear more. We asked God to guide the surgeons’ eyes and minds and hands, and we asked him for a good outcome. We thanked him for his love and faithfulness, and told him we appreciate his power and his peace. That’s it. It feels good to leave our fears with God because he can handle them better than we can.

ICU day 6

Susan’s recovery in ICU continued today following a restful night. When her heart rate dropped to the low 40s this morning, her nurse was concerned that hydrocephalus had returned and requested a CT scan. The results were actually outstanding – no hydrocephalus and less blood. The doctors were wondering where it all went; but they might understand if they knew how many people have been praying. Now we can say prayers of thanks for such good results. The scan still shows some swelling, so Susan will need to remain on elevated steroids for now.

The neurosurgery and vascular surgery teams are coordinating their plans, which may still happen together in the OR. The neurosurgeons will sterilize and internalize the drain they removed on Friday rather than either pull or replace the entire shunt. With her VP shunt enclosed but not operating, it’s won’t become clogged again with clotting blood in the short term, and won’t need to be completely re-implanted if she needs it in the longer term.

Next, the vascular surgeons will revise Susan’s power port either during the same procedure tomorrow or perhaps Wednesday, if the shunt procedure happens at bedside.

Meanwhile, back to brain cancer treatment, Dr Nghiemphu visited us today and is both pleased with Susan's status and eager for her to resume chemotherapy when she can handle it. We're bumping next week's scheduled MRI and oncology visit to allow more time to heal, so we'll get back to clinic on April 10th. We'll be prepared to begin chemo again if necessary. 

In her occupational therapy session today, Susan showed good strength in her legs and improvement in her arms – encouraging signs as Susan edges back to rehabilitation. The therapists here will recommend acute rehab once again, so we hope insurance approvals will not be delayed following her prior false start.

We thank God for Susan’s progress in recovery, for her hemorrhage and hydrocephalus resolving so well, and for God’s favor on us during this episode.

ICU day 5

Sunday in ICU was another restful one for Susan, who didn’t fall asleep until 4am again. Since her wakefulness might be due to round-the-clock interruptions for neuro exams, meds, and blood tests (ya think?), tonight she’ll be on “sleep hygiene.” That means they’ll keep interruptions to a minimum. I like to make fun; but they really do a great job here of balancing treatment vs patient needs. Hopefully, she’ll get better rest. 

To add to Susan’s progressing recovery, our buddy Chris removed her EEG electrodes today. We’re now well-acquainted with the EEG guy who set up her first EEG in December, her second in February, and removed the third today. Another hospital pal – he’s one of ten EEG guys here, so having him get Susan again is kind of a kick. Also today her CSF drain started working, the previously clogged line they extracted on Friday. I’m not sure why it’s working now, but that’s okay. I’m also not sure how getting her brain drain working will affect timing for surgery – I just know there’s no word yet on when she’ll go to the OR. 

Yesterday was our 28^th anniversary, so we celebrated the way you do in ICU, without flowers. Whatever. We just go with it. It’s ironic to be here at UCLA since my school calendar when I attended here dictated our wedding date. We felt the fall of 1984 would be too soon to pull off the wedding, and were too eager to wait until the summer of 1985. March 23, 1985 followed my final exams and commenced spring break, so that was the day. 

Sometimes I’ll hear a guy refer to his wife as his “ball and chain.” My version of that sad and foolish view is that Susan and I have a ball being together and treasure a long chain of experiences as husband and wife. We thank God often for the gift of life and for the gift of each other. We sensed his hand in bringing us together and in calling us to spend our lives as one. He’s blessed me beyond belief with Susan.

It’s been fun to see how the staff here reacts to us. Since healthy, long-lasting marriages now are sadly rare in our culture, people are encouraged to see a couple who actually are in love, happy, stable, and all of that. To us, it’s neither odd nor complicated make a sincere commitment in marriage and keep it, so we’re glad to share what that’s like. I’m thankful I could wish Susan a happy anniversary yesterday. I remember hoping to reach our 25^th, so it’s wonderful that we’ve banked even several more years.

ICU day 4

Today has been a quiet day for Susan, who got some needed rest after being awake for most of the night – probably because of an increased steroid dose. I, on the other hand, did not increase my steroid dose and got some good chunks of sleep in while splayed out in the recliner next to Susan’s bed.

We enjoyed a late-morning visit from Susan’s dad, brother and wife, and pastor. We prayed and chatted and prayed again. I filled them in on the latest events and plans and identified some of her tubes and medical bits. They were relieved to see her looking good and alert.

Later, Susan’s wonderful nurse arranged for a visit from a therapy dog named Bella, who arrived after I stepped out for lunch. Susan had been deep asleep, but fully awoke and interacted with Bella. It’s been hard for Susan to wake up at times, so this was a good sign. She loved having the dog visit and petting her soft fur. 

The level of care in ICU is amazing. There are just two patients to each highly-skilled nurse, who is stationed to observe both at once. Each of Susan’s nurses has been responsive, sharp, and caring, a fact that put me at ease right away when she was admitted to the unit in such need. To have a quiet weekend under their care after such an active first several days feels like progress.

The other day I thought about the nature of God, grateful that he is both supremely loving and all-powerful. If he were so loving but lacked power, I suppose he’d be the most cuddly wimp we could know. If he were all-powerful but lacked love, his terror would consume us – if we were allowed to live at all. I realized it’s right to fear God for his power and enjoy him for his love, and to thank him that he’s complete in both. He’s been that for us this week.

Stabilizing, waiting

We’re glad the intensity of the past several days has lifted as Susan remains under watch in ICU. The big events today were a plan, a report, and a test. First, the neurosurgery team will observe her status this weekend since she hasn’t had any fluid drained from her brain since Wednesday. They’re watching in case her status declines, which will prompt them to place an external drain and relieve pressure. In any case, they’re talking about doing surgery Monday or Tuesday to remove non-working hardware and implant a new shunt and power port. 

Second, I learned that yesterday’s MRI showed no additional bleeding, but did show quite a bit of blood, swelling, and increased contrast to indicate tumor growth. But according to Susan’s neuro-oncologist, it’s hard to say how much is tumor growth vs contrast solution reacting to blood. No matter what, Dr. Nghiemphu is eager to restart chemotherapy as soon as Susan is able. 

Susan's pal Brobee for hand therapy.

Third, Susan had about a dozen leads placed into her scalp for a continuous EEG that monitors her brain waves for seizure activity. She handled the painful procedure like a champ and now has a lovely crown of electrodes. She’s had some spacey episodes that seem seizure-like, but none where she’s been unresponsive as with last December. The EEG will record all seizure activity observed and unobserved, so we’ll know those results later.

As of now it looks like Susan will be in ICU until the middle of next week or at least a night or two after her shunt+catheter surgery. She’ll probably have a day or two in transition to the neuro ward and then be discharged. Hopefully she can return to acute rehab by Easter weekend.  

We’re thankful for a new appreciation of our resources in the Lord. His peace and strength; his love, faithfulness, and powerful hope have been ours in full measure this week. At a hospital with 510 beds where perhaps 509 other people are enduring their own episodes of medical crisis, it’s amazing that God cares for each of them as much as us, while none of his attention or supply for us is diminished. And we’re just 510 people in a Los Angeles hospital out of 7 billion on the planet whom he loves perfectly as well. God is so huge. We’re thankful for how he cares for us.

Shunt procedure 2

It's been a difficult couple of days for Susan. Having two identical tubes located in the same area near her right clavicle caused the neurosurgery team to make a mistake yesterday. Thinking her recently-implanted VP shunt tube was routed to the right of her port catheter tube, they cut the wrong one when trying to extract the shunt. As a result, IV access through her port was literally cut off, causing the saline drip to infiltrate and swell the surrounding tissue. Meanwhile, the blocked shunt tube remained intact.

The good news is it apparently caused no other problems than disturbing the tissue and forcing a new sequence of procedures. Late last night they put in a temporary central line to supply needed IV access. New imaging shows the shunt tube crosses to the left of the catheter line and extends down along the center of her chest wall. This evening the neurosurgery team is extracting the shunt tube so Susan’s CSF can drain externally as intended. Next, the vascular surgeon who implanted her port catheter will remove it as well, perhaps tonight.

Once her brain hemorrhage and hydrocephalus properly stabilize, she’ll have a two-part surgery where the neurosurgery team will implant a new VP shunt, then the vascular surgery team will follow and implant a new port catheter. Such a deal.

Meanwhile, Susan had an MRI this morning for a detailed view of her brain bleed. I haven’t heard the radiologist’s report yet, but since she’s been mostly stable, I suspect the bleed has stabilized also. She’s definitely several notches below normal with spotty orientation and hit-or-miss responsiveness.

I had a surprising report from the neurosurgeon who tapped her shunt yesterday – she woke up before he even tapped it, which blows my mind. That means she went from deep, unresponsive sleep to being awake and alert regardless of having CSF drained to relieve pressure. That kind of sleep returned this afternoon, causing everyone to be concerned again about her status until she was able to be roused. Perhaps this week’s events have just made her neurologically unstable, hopefully just for now. We’ll know in time.

Being able to post updates on this blog and on Facebook has brought friends and family to respond in prayer and with encouraging comments. I want you all to know how deeply we appreciate your care and prayers. A hemorrhage of any kind sounds scary; but learning Susan had a brain hemorrhage rattled me – even for the second time. Such news is never welcome.

But the hope and peace God provides are real and steel-strong for us. I can’t explain Susan’s brain tumor or her many complications or her nearly six years of survival. I can’t explain how we haven’t crumbled under it but for God and his catalog of mercies for us. You’re part of it, both as a source of blessing to us and as witnesses of God’s grace in spite of heavy circumstances. We love and thank the Living God and we love and thank you. Thank you for keeping Susan in prayer.

Shunt procedure update

The procedure finished, so Susan's shunt is now draining externally. Her CSF from the brain is bright red instead of the usual yellow-gold due to the bleed.

She has quite a bit of swelling near the site. They thought at first it was fluid from her abdomen flowing upward through the part of the lower shunt they couldn't remove and had to cut, but the large amount of swelling didn't make sense.

Now they suspect the needle leading into her port catheter was dislodged during the procedure, causing saline going into the line to seep into the surrounding tissue. They'll shoot a quick x-ray to see if that's true. If so, they'll place a new needle and continue using her port. if not, it's more complicated. Either way, later tonight she'll have an MRI instead of a CT scan for a detailed look at the bleed.

Susan is awake and alert, and is the sweetest person in the whole world, I tell you. She's clever, too. Doctor, who Susan just called "honey": "How many fingers am I holding up?" Susan, who either has no idea how many or just can't get the word out: "That many."

Sent from my iPhone

Shunt procedure

The neurosurgery team is doing a procedure to pull the lower part of her shunt near her clavicle so they can remove its blockage and it can drain blood and CSF externally. We pray for no complications. Her symptoms are still good. 

Our neuro-oncologist Dr Nghiemphu showed me this morning's CT scan and new pockets of blood in three areas: tumor cavity, ventricles, and left occipital brain.  The first two are not too worrisome since they're open spaces; but the brain area could have visual or cognitive effect. Time will tell.  

It's possible the hemorrhage actually caused the hydrocephalus if bleeding began, clotted in the shunt, and blocked the flow of fluid. So two separate complications may be cause and effect. 

Dr Nghiemphu forewarned me that whatever cognitive hit the bleed may have caused may take a long time to resolve or may not resolve at all. She said hemorrhages are troublesome; and we don't know how this latest insult to Susan's brain may have damaged it. So far she seems okay to me since she woke up. Let's pray for healing and restoration. 

"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1

Sent from my iPhone

Quick help in ICU

I'm greatly encouraged that Susan is awake, alert, and even laughing here in ICU. The neuro team tapped her shunt and drained off about 10 cc's of CSF, enough to lift the pressure from hydrocephalus and bleeding. They'll test the fluid for infection also.

She's been swarmed for the past couple of hours here with top-notch nurses setting her up for treatment and observation. They've administered several things to enhance clotting against her brain hemorrhage - blood plasma, blood clotting factor 9, and vitamin K.

Her CT scan this morning was thankfully stable vs last night. She'll have another at about 6 pm. These ICU people are awesome.

Meanwhile, with the return of hydrocephalus, they'll evaluate her VP shunt after suspecting a blockage in the distal or lower portion. That may require another surgery; but it's too soon to know.

A hemorrhage and hydrocephalus are a lot to deal with at once; but we're relieved to have a positive turn at last. We're secure in the peace of God and grateful for so many prayers on our behalf. Thank you.

Sent from my iPhone

Brain hemorrhage

We learned this morning that Susan has had a brain hemorrhage. She had a CT scan around midnight after arriving earlier at UCLA from acute rehab in Long Beach. The neurosurgery resident said they observed discreet areas of bleeding and have ordered a second CT scan to check its progress. She’ll have an MRI soon as well for greater detail and will be moved to ICU.

The priority is to stabilize her bleeding with a drug that counters the effect of Coumadin she had during her stay in rehab that was used to treat blood clots they discovered in both legs. Such a deal. Once she’s stable, they’ll decide next steps.

Yesterday afternoon I got concerned when she became discomforted and verbally unresponsive, though awake and mostly alert. Since about 2am, she’s been sleeping and mostly unresponsive.

Susan had a brain bleed a little over four years ago that brought her to ICU here with preparations for surgery, but the bleed resolved on its own. Please pray for another such outcome.  

Have mercy on me, my God, have mercy on me, for in you I take refuge.
I will take refuge in the shadow of your wings until the disaster has passed.

I cry out to God Most High, to God, who vindicates me.
He sends from heaven and saves me, rebuking those who hotly pursue me — God sends forth his love and his faithfulness. Psalm 57:1-3

Revisiting a slump

Although I was able to coax a few smiles from Susan yesterday, much of the day she didn't feel well and had several vomiting spells. Her cognitive and physical weakness persisted. She could offer only delayed responses and one-word answers.

Her neuro-oncologist confirmed she needs to see the neurosurgery team at UCLA as soon as reasonably possible to evaluate her shunt. With more vomiting today and no other improvement, the UCLA neurosurgery team agrees and wants her admitted to the hospital. Susan will be transferred once doctors finalize the details and a bed is available.

We're probably in for an ER-type experience except her room where we wait in Long Beach is larger and the ride to UCLA's 6th floor neuro unit is longer. Susan may be in for another multi-day stay to diagnose, treat, and observe, hopefully with a mere shunt adjustment.

From there the good therapists in Long Beach are eager for her to return and pick up acute rehab without anything working against her. The journey continues. We have peace.

Sent from my iPhone

A mid-week slump

After a report of Susan vomiting on Tuesday afternoon during therapy got my attention, two more episodes on Wednesday gave me concern. Another neurological hit could mean a shunt failure, brain bleeding, or several other serious but less urgent problems. She was less talkative on Tuesday evening, needed maximum queuing during therapy, and had been staring at her food rather than feeding herself. These are not good signs. 

The attending physician in rehab ordered a brain CT scan Wednesday, which thankfully appeared to rule out our most serious concerns. But as Susan’s advocate, I wasn’t satisfied. While I didn’t doubt the LBMMC radiologist’s opinion of that scan, I knew it would be more meaningful when compared with the others recently done at UCLA. I requested a CD copy, picked it up Thursday morning, and delivered it to Dr. Nghiemphu at UCLA. She emailed me later to say there’s no remarkable difference between it and Susan’s prior scans, but she’d have the neurosurgeon view it as well. 

With good news confirmed, we still didn’t have anything actionable for Susan’s symptoms. Fortunately, she’s had no anti-nausea meds since Wednesday night and no vomiting either. She still seemed affected to me last night, but maybe she was just tired. Nurses reported a good day in therapy. We’re left without knowing anything conclusive about her mid-week slump other than it seems to be resolving, so that’s good. She may be experiencing a residual effect from having a tube implanted in her brain, or perhaps from last month’s chemo. Or both. I’ve had to become uneasily comfortable not having all the answers. 

The plan is for Susan to come home next weekend, perhaps even Friday. We’ll take a half-day jaunt on Wednesday to UCLA for chemotherapy. Hopefully, she’ll be able to make the best of her remaining therapy hours and come home well enough for us to care for her safely here. 

Susan’s absence reminds me of 2008 when she was in rehab for three months. I think I miss her more now after just a week than I did then, perhaps because now I wonder what our home would be like without her when she goes to heaven. This is not a hopeless thought, just a hard one. My consolation comes when I see her again at her bedside, kissing her forehead and saying I love her. Being able to do that is actually a great gift, as though I’ve lost her and have the miraculous opportunity to see her again. I expect this will comfort me on the day I need it. 

Meanwhile, the Living God never slumbers or sleeps and is constantly working out his good purposes for us. Susan drank in these words from Psalm 57 when I read them to her last night: 

“Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills his purpose for me. He sends from heaven and saves me, rebuking those who hotly pursue me; God sends his love and his faithfulness.” 

Susan usually can’t tell you what day it is, but she received God’s word for her, looked me in the eyes, paused a few moments, and said, “That’s perfect.”

Therapy is a good thing

After a few days ramping up and being evaluated, Susan had her first full day of physical, occupational, and speech therapies today. She was in good spirits this evening as she ate dinner during my visit after work. I’m not sure if I ever met anyone with a better disposition, more easy-going, less grumbly, more hopeful, and more patient than Susan. She just goes with it. I’d have tried a jailbreak or two by now if it were me. Not her. She’s calm, sweet, and majorly strong. 

As I speak of her strength of character, I was amazed on Saturday how much physical strength she’d gained just in the couple of days since she arrived. As Michelle the physical therapist did her evaluation, she tested for strength, flexibility, and initiation of movement as she led Susan to lie down and get up from a bed and then take a few steps with a walker. The strength is returning to Susan's right arm, so she's able to lift it more and grip things slightly.

The therapist is recommending she stay in acute rehab for three weeks, so if insurance is on board for that long, she’ll come home greatly improved. Meanwhile, we visit each day and look forward to her coming home. I can’t deny I’m relieved myself during this respite from the routine and responsibility of caring for her at home, so I’ll use the time for some caregiver rehab. I keep thinking about Psalm 54:4, “Surely God is my help; the Lord is the one who sustains me.” He’s got it all worked out.

Rehab begins

After several days to recover from surgery, Susan transferred to the rehab unit at LBMMC yesterday evening. She feels okay and will begin her physical, occupational, and speech therapy evaluations this morning, which will indicate how long she may stay.

She's slated for three to six hours of therapy daily. We're thankful for good progress and answered prayer.

Sent from my iPhone

Waiting for therapy

Today’s activities for Susan included a shower and some time in the recliner as she continues to recover from Monday’s surgery. Unfortunately, the one activity we most wanted was deferred another day – getting transferred to an acute rehab unit. We still have Long Beach Memorial in mind and hope to work out the insurance details; otherwise, we’ll settle for an alternate in San Pedro. 

She’s feeling okay and is in good spirits with the relief her new shunt provides from hydrocephalus. What remains is to regain use of her right arm and be able to walk again with her prior strength. We expect she’ll respond well to therapy. We thank God for his faithfulness and we’re extremely grateful that so many people have lifted us in prayer and expressed their care.

Making progress

The 24 hours since Susan’s surgery have gone well. Her CT scan last night showed the VP shunt is placed properly with no bleeding in her brain. She’s had some pain at the surgery site, but only accepted pain meds once today. While some of her cognitive fog has lifted, she’s still quite weak physically.

Surgically speaking, she’s doing well enough that the neurosurgery resident is ready to release her from the hospital. Physically though, the therapist recommends she move to an acute rehab facility. Unable to stand on her own at all or with assistance for long, and unable to grip a walker with her right hand, we expect she’ll get stronger with 3-5 days of aggressive therapy so she can transition home. This afternoon, we met with the clinical social worker who’s making the arrangements.

Later, I went across the street to the old hospital to look around and buy a t-shirt at the health sciences student store. Near the west elevators I ran into Dr. Bergsneider and Dr. Shafa, both neurosurgeons, as they were leaving for the day. I thanked Dr. Bergsneider for his good work with Susan’s surgery yesterday and then I re-acquainted myself with Dr. Shafa, who happens to help my mother monitor her meningioma. It’s a benign brain tumor diagnosed about 30 years ago, but that's another story. 

With that chance meeting, we’re thankful to be on the neurosurgery friends and family plan at UCLA and grateful for all the caring doctors and nurses who helped us this week. We’re especially glad Susan is making progress and can get on with the next phase of recovery.

More hospital observations 
When you walk up to the cafeteria cashier lady with a hot beverage while she’s coughing but she needs to know what kind of hot beverage you’re buying so she stops and says “Coffee?” and you say, “No, but you are,” then that’s kind of funny because you really do have coffee.

When a social worker lady you don’t know walks into your wife’s room while she’s sleeping and looks at you and asks if you’re your wife’s son and you tell her you’re her husband and the social worker lady says the son asked for a letter and you say you’re not the son and you tell the social worker lady she must have the wrong room and then the social worker lady turns away with a look of disbelief as she mutters something about talking to the nurse and then you ask her if she’s giving out letters and she laughs as she’s leaving – when that happens, you turn to your now-awake wife and say, “I was hoping she’d give me a letter. They’re expensive at UCLA.”

Successful surgery

Susan's surgery concluded a short time ago with no complications. The neurosurgeon quipped it was boring, which is certainly better than the alternative. She's doing well and will return to her room in a while. We thank God for a smooth procedure and everyone for your prayers.

Sent from my iPhone

In surgery

Susan went to the OR a short while ago for surgery to plant the VP shunt and should be back upstairs by 3:30 or 4pm. She had nausea and vomiting earlier but was better after meds. She's really sleepy and didn't need any pre-op narcotics. I didn't either.

Sent from my iPhone

On stand-by

Susan rested well overnight and is on stand-by for surgery. The schedule is fluid; but they're looking at an OR opening around 1pm.

Sent from my iPhone

Prepped for a VP shunt

I just signed the consent forms for Susan’s procedure tomorrow to have Dr. Bergsneider implant a VP shunt. The staff did a few more pre-op tests since yesterday, including a lumbar puncture to draw cerebrospinal fluid (CSF) and check for infection (it’s negative). Since her procedure is being added to a full schedule, the earliest we’ll know the timing will be 8am. When an operating room becomes available due to something like a no-show or medical complication, the team will swoop in and get started. We’re likely to have about an hour’s notice any time during the day.

Meanwhile, Susan is stable today but weaker in her right arm. It’s really a flopsy item now. Her mood is mellow and pleasant. She’s great at just going with the flow. She’s getting a lot of rest and is eating well. I’ll help her get a good run at dinner since she’ll be without food or water after midnight.

The neurosurgery resident gave me the run-down – bear with me since I geek out on Susan’s medical stuff. The big term is a ventriculoperitoneal shunt, but VP works fine for me. It involves one tube or catheter connected to the brain cavity, another connected to the abdomen, and a small pump in between.

They’ll make an incision in the scalp and drill a small hole in the skull over the right side of Susan’s brain to implant the tube in her ventricle, which they’ll run under the scalp behind the ear where they’ll locate the pump. The pump is a small device that can be adjusted magnetically from outside the scalp. Susan’s version will be MRI compatible.

They’ll connect the peritoneal tube to the pump and guide it around the neck and down the chest wall, under the skin between the fat and muscle layers. They’ll make another incision in her abdomen and connect the tube so it drains into the peritoneum, which is a membrane that covers abdominal organs and is a conduit for blood and lymph vessels and nerves. CSF can be drained there and safely absorbed. Thus endeth today’s lesson. Please don’t try this at home.

The VP shunt replaces Susan’s LP (lumbar-peritoneal) shunt she’s had since late 2007, which will now remain in quiet retirement. LP shunts drain CSF more generally from the spinal column that connects to the brain, so having the VP shunt provides more strategic placement and drainage. Like any plumbing, the goal of a shunt is to flow easily for a lifetime; but sometimes proteins can build up and clog the lines. That may be what happened in Susan’s case.

There are some risks to this procedure for Susan, so we appreciate your prayers. Aside from the usual risks for infection with surgery, general anesthesia for someone on long-term steroids can be complicated. Since steroids artificially substitute what the body would produce, there’s a risk that adrenaline normally kicked in to maintain blood pressure during the stress of surgery may not happen for Susan. The surgery team is aware of this complication and will be prepared to handle it.

We’re not really worried about these risks in particular or worried in general. We trust God completely with the outcome of surgery tomorrow and Susan’s brain tumor journey overall. That said, we welcome your prayers. Our desire is to see God’s purposes established in and through our lives in whatever way that pleases him. This was a point of breakthrough in Susan’s spiritual walk during the time before cancer came into our lives. She surrendered to God with the desire that he use her life to bring glory to him.

By the way, that doesn’t mean he zapped her with cancer – the Living God gives good gifts. But it does mean he’s welcome to use any circumstance of our fallen world to demonstrate his grace in our lives. Approaching six years in brain tumor world, that grace with his peace and a host of other gifts have become fused into our experience for good. We own them. We love him for it. 

This is the precious product of going through hard stuff with an expectation that such seasons can in fact be fruitful. It’s his grace that even gave us that expectation in the first place. We still don’t know what it all means exactly, but we’re confident in God working it out. My spirit sings “He can work it out.” Can I get an amen? We have the greatest guide and companion imaginable. He made us and we are his.

Surgery Monday

Information has been hard to come by today, so we’ve done a lot of waiting. The hospital launched a digital charting system at midnight that will streamline patient care in lots of ways, like making a doctor’s order instantly available instead of needing to live in a folder until someone finds and acts on it. 

The future state sounds fantastic; though getting there has been a challenge for everyone – technicians dealing with bugs, staff having their familiar methods disrupted while double-checking details to maintain patient care, and patients and families waiting through extra delays during a process that’s already complicated and time-consuming.

For us, it was a long evening in the ER waiting for a bed upstairs, a long night upstairs waiting for meds, and a long day waiting to speak to doctors about what they’ve learned and what they’re planning. Being loopy from lack of sleep didn’t help me be more patient. Fortunately, now we know Susan will have surgery on Monday to replace her shunt and resolve her hydrocephalus, the fluid build-up in her brain.
 
The scans seem to show a gradual build up of fluid over some time, though her recent tumor growth may have increased it. With her L-P shunt in place for over five years, we don’t know how long it’s been working poorly; but now it needs attention. Dr Bergsneider may choose to implant a ventricular (V-P) shunt this time, depending on how the fluid is collecting in her brain. Susan started some pre-op activities this afternoon: chest x-ray, blood work, and EKG. She also had an EEG to check her brain activity for seizures and follow up on her hospitalization over Christmas.

It’s a relief to come to the action phase of our visit, and a bigger relief to know Susan’s problem itself is actionable. I’m well aware we could have been facing the same symptoms due to a progressive tumor that’s not responding to treatment. We’re glad that’s not our battle today. 

In spite of Susan’s continued physical weakness and brain burden, she’s still sweet as ever in her wakeful times. We both have such peace; we know it’s from God and thank him for it. I found another beautiful nugget in his word this week: “Surely God is my help; the Lord is the one who sustains.” (Psalm 54:4) We’re grateful as always for everyone’s prayers and expressions of care for us.

Another hospital observation:

When you need to renew your 24-hour permit in the parking structure below the 200 Building because you know from experience you will get a ticket when it expires, and you get in the elevator and press the “B1” button and the doors close but nothing happens and you press it again and again and still nothing happens and then the elevator goes to the 6^th floor and stops with the doors closed and none of the buttons you push are working and you become just a bit concerned, and then you press the “Emergency Help” button and the elevator voice lady asks if you’re stuck in an elevator and you say “yes” and then she asks if you need medical help and you say “Probably not for several hours” and she laughs and asks if you tried to go back to the first floor then you push “1” and the elevator starts moving while the elevator voice lady tells you it’s Saturday and the building is closed and elevator access is restricted, and then you thank the nice elevator voice lady as the doors open on back on the 1^st floor where you started in an apparently closed building – when that happens, you walk instead to the stairway to go renew your 24-hour permit and say to yourself, “What a silly elevator.”

Hospital observations

• It’s best not to have an emergency medical need on the evening an entire hospital moves to an all-new, digital charting system. 
• If “Real Stories of the ER” were a true reality TV program, it would be 8-10 hours viewing one 12-foot wall in an exam room. Of course, they’d have to air it in one-hour installments. And you’d beg for a commercial.
• A blanket warmer is one of the best things there is.
• The attending ER physician shared with us that his father also had GBM 20 years ago. Another compassionate brain buddy. We bonded.
• Hospital time is not of this world. I’m nearly 50 in human years and probably about 34 in hospital years. Maybe younger.
• If you discover the hospital unit pharmacy doesn’t stock the oral chemotherapy capsules your wife needs even though you filled the order at the oncology clinic next door and it’s after 11:30pm because you’ve been in ER all day, you need to drive home and get them.
• If it’s after 1:00am and the nurse tells you she needs to deliver the oral chemotherapy capsules you picked up at home to the hospital unit pharmacy so they can dispense them back to you, and then she recommends you give the hospital unit pharmacy only several doses and keep the rest, you should do that.
• If you wake up in the hospital recliner and realize you’ve fallen asleep because it’s the middle of the night and you’ve been in the ER all day and then you realize the hospital unit pharmacy hasn’t dispensed the chemotherapy capsules you drove home to get for them at midnight, and then you learn they’re not authorized to dispense chemotherapy capsules without orders from an oncologist and they don’t have orders from an oncologist because it’s the middle of the night, you should get your secret stash of chemotherapy capsules and give your wife her meds and tell yourself it’s okay to break lots of hospital rules because it’s after 5:00am and it’s the right thing to do, doggone it. That’s about all I have to say about that.
• Waiting in a hospital room for the team of specialists to make rounds so you can find out what they think is going on with your wife and how they plan to treat her is kind of like being on restriction.

To ER for hydrocephalus

Our caregiver Jackie alerted me this morning that Susan was quite weak on her right side and having trouble with speech and responsiveness among other things. After speaking with her neuro-oncologist, I arranged to leave work and bring Susan to the ER at UCLA. Dr Nghiemphu conferred with Dr Bergsneider, the neurosurgeon who planted her L-P shunt in 2007. He's ready to replace it today if necessary. 

It seems we've been leading up to this. While we were here in clinic for chemo on Wednesday, Dr Nghiemphu arranged for a CT scan of the brain to check the status of hydrocephalus we'd observed the prior week along with her tumor growth. It appeared stable (not worse) on the CT, but seemed troublesome enough to be causing Susan's recent symptoms. We then scheduled to see Dr Bergsneider next week so he could evaluate the shunt - but that timetable has definitely advanced. It's possible her tumor growth triggered the hydrocephalus and the shunt isn't draining the excess fluid like it should. It's also possible the tumor or something else is at work, a more complicated idea. 

For now, we're in the familiar ER holding pattern after having an initial evaluation and another CT scan. Susan is very tired and is sort of a rag-doll on her right side. She can barely lift her arm and can't grip anything. Her right leg is similarly weak, while a slightly drooping mouth completes the affect. Words are hard to come by for her right now - but responses like "I love you too, honey bunny" trail off as sweetly as ever. She's in good spirits and peaceful; and right now, sleeping. I'll post more as things proceed.